Tag Archives: Fluoroquinolone toxicity

Floxie Hope Podcast Episode 16 – Amber

me

I had the pleasure of interviewing Amber for Episode 16 of The Floxie Hope Podcast. You can listen to the podcast through either of these links:

http://www.floxiehopepodcast.com/episode-016-amber/

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

Note that all episodes of The Floxie Hope Podcast can be downloaded through any podcatcher. Just go to your app store, type in “podcatcher,” download whichever podcatcher you prefer, and search for “Floxie” – the podcast should pop up and you should be able to download it from there.

You can also read Amber’s story here – https://floxiehope.com/ambers-recovery-story-cipro-toxicity/

Amber’s fluoroquinolone toxicity symptoms included:

  • Brain fog – Even though I had a hard time concentrating I still had work and school and was not about to stop either.
  • Eye issues – including pain, light sensitivity, and dry eye.
  • Bee stings throughout my body
  • Vibration sensations
  • Muscle twitching
  • Pain in my legs- I had a hard time walking up the stairs to my apartment.  I would feel like I just ran a mile when I only took a few steps.
  • Anxiety
  • Sensitivity to alcohol and caffeine.
  • Sunburnt sensation all of my body
  • Hot spots on my legs
  • Migraines
  • Back ache

One thing to note is that Amber’s symptoms were significantly delayed. It’s difficult to connect cause to effect when a drug causes symptoms months after administration of the drug has stopped.

Amber’s message of hope to all of you is her encouragement to NEVER GIVE UP. When the “flox bomb” was going off in her, she had neurological problems and anxiety that were difficult to get through. She made it though. I hope that you find her story, and her podcast, to be encouraging!

 

 

flu tox get help you need banner click lisa

Fluoroquinolone Toxicity is a SYNDROME

may-cause-death

First, a caveat–I realize that allergic reactions can be serious, severe, and deadly. There is nothing minimal about anaphylaxis, and not all allergic reactions to pharmaceuticals are as simple as hives that go away as soon as one stops taking the drug. If someone has an acute allergic reaction to a pharmaceutical they deserve care and recognition of their reaction as serious.

With that said, I’m sick of pharmaceutical-induced SYNDROMES being ignored because they don’t fit into the standard allergy model. Drug toxicity SYNDROMES are just as serious, devastating, and severe as allergic reactions. In my case, fluoroquinolone toxicity SYNDROME was significantly more serious, devastating, and severe than my sulfa antibiotic allergy.

Fluoroquinolone toxicity SYNDROME looks and feels a lot like various autoimmune diseases (rheumatoid arthritis, lupus, M.S., etc.), mysterious diseases (fibromyalgia, ME/CFS, POTS), psychiatric illnesses (depression, bipolar disorder, anxiety, etc.), and recognized drug toxicity syndromes (like benzodiazepine withdrawal syndrome). These symptoms, and the connections between these serious diseases and fluoroquinolones, should be recognized.

Here’s a post I wrote for Hormones Matter about the various drugs that are causing SYNDROMES of multi-symptom, chronic illness. Please read and share it:

Allergic Reactions or Iatrogenic Illness?

Thanks!

 

flu tox get help you need banner click lisa

 

fluoroquinolone-lawsuit-trulaw

Fluoroquinolone Toxicity and Acetylcholine (ACh) Damage

I suspect that fluoroquinolone antibiotics deplete, inhibit, or otherwise adversely affect acetylcholine (ACh). ACh is a neurotransmitter that has the following functions:

  1. It is a neuromodulator of the central nervous system, the autonomic nervous system, and the peripheral nervous system.
    1. In the autonomic nervous system, ACh has key roles in both the sympathetic and parasympathetic nervous systems, and affects motility through the digestive tract, sweating, tear production, balance, heart-rate, breathing, etc.
    2. In the central nervous system, ACh plays a role in regulating arousal, attention, sleep, and motivation.
    3.  In the peripheral nervous system, ACh controls muscle activation (both skeletal muscles and smooth muscles–the muscles that involuntarily contract and release).
  2. It affects vascular tone.
  3. A lack of ACh is linked to Alzheimer’s Disease, Parkinson’s Disease, autism, schizophrenia, bipolar disorder, and other chronic CNS illnesses.
  4. It suppresses inflammation.
  5. It affects the release of hormones.

Fluoroquinolones damage connective tissues (tendons, ligaments, cartilage, fascia, etc.) throughout the body, as well as the nervous systems (central, peripheral, and autonomic). After getting “floxed” people often suffer from autonomic nervous system dysfunction (including dysautonomia, loss of digestive motility, problems sweating, balancing, etc.), central nervous system dysfunction (including psychosis, insomnia, changes in personality, etc.), and peripheral nervous system dysfunction (including peripheral neuropathy). Fluoroquinolone toxicity often resembles autoimmune diseases in its symptoms, and, like many people with autoimmune diseases, inflammation is often rampant in those who are floxed. Many “floxies” have reported hormonal problems, including thyroid hormone abnormalities, as well as undesirable levels of estrogen, progesterone, and testosterone.

There is significant match-up between the list of documented effects of ACh depletion/damage (summaries of ACH effects can be found HERE and HERE) and the documented effects of fluoroquinolones (the warning labels go over most of the symptoms of fluoroquinolone toxicity, but the personal stories on this site, as well as the stories on www.fqwallofpain.com, facebook, and other places on the internet better exemplify the actual effects of these drugs).

fluoroquinolone-lawsuit-banner-trulaw

In addition to the obvious links and overlaps noted above, the links between fluoroquinolones/fluoroquinolone toxicity and ACh damage are more thoroughly explored in the post, “Acetylcholine (ACh) – Related Damage” on www.fluoroquinolonethyroid.com. In it, JMR describes the connections between fluoroquinolones (and fluoroquinolone toxicity) and acetylcholine:

“Still, there were many reasons I felt that many of my problems could be ACh related, and here are some of them.  As I’ve already stated, I felt that many of my symptoms and acute flox reaction could be described as “cholinergic/anti-cholinergic” in nature, and/or MG (myasthenia gravis) related.   Drug label warnings specifically state the Fluoroquinolones have neuromuscular blocking activity, so pharma is giving us a big clue here.  ACh modulates a host of physiological processes in the central and peripheral nervous systems.  Centrally, ACh regulates motor function, sensory perception, cognitive processing, arousal, sleep/wake cycles, and nociception, while in the periphery it controls heart rate, gastrointestinal tract motility, and smooth muscle activity.   Non-neuronal ACh and AChE are distributed throughout the body, making ACh transmission and metabolism important for all cells in the body, not simply neurogenic cells.  Additionally, Non-neuronal ACh and AChE are found in tendons, and increased expression of both occurs in pathological tendinosis, and is thought to contribute to tendon pathology. (Forsgren/Danielson lab studying role of non-neuronal ACh in chronic tendinosis and tendon pathology  – search “non-neuronal ACh Tendons”).  In relationship to the thyroid, cholinergic interaction with the thyoid gland is extensive, and common epitopes may exist relating thyroid autoimmunity and ACh/muscarinic receptor autoimmunity.  ACh appears to be necessary for iodine organification (so this might be one underlying mechanism of action to explore for Hashi’s).  MuSK form of MG (myasthenia gravis) may be a separate condition from MG and there is a known association between “MuSK MG” and Graves disease.  Magnesium prevents or controls convulsions by blocking neuromuscular transmission and decreasing the release of acetylcholine at the nicotinic ACh motor nerve terminals (the analgesic properties of Mg are due to NMDA receptor blocking action). In (my) Year 5 post, as my symptoms progressed, it became apparent that Magnesium was actually exacerbating my muscle weakness, presumably by blocking neuromuscular transmission, and magnesium is something that is known to exacerbate MG symptoms (so for any flox victims for whom magnesium makes your symptoms worse, especially muscle weakness, this is something to consider).   ACh is an underlying common denominator anytime we eat; distention in the stomach or innervation by the vagus nerve activates the Enteric Nervous System, in turn leading to the release of ACh.  Once present, ACh activates G cells (produces gastrin) and parietal cells necessary for digestion.   From an FQ-Induced collagen/connective tissue damage point of view, appropriate collagen formation is also very necessary for AChE function and ACh transmission, and lack of it can result in Myasthenia Gravis like symptoms, as these COL Q studies confirm: 1, 2, 3, 4,  (and suppression of collagen prolylhydroxylation as in this FQ study here can affect COL Q; also scroll to “collagenous domains as substrates”, AChE, in this “Prolyl 4-hydroxylase” paper here).    Because of the necessary symbiotic relationship of mitochondria with their host cells (as I described here), anything that affects the host cell will often affect mitochondria as well, and this most certainly will include ACh-related problems.   However, never to be left out of an opportunity for direct damage, it turns out mitochondria also express a number of nicotinic acetylcholine receptors too (1,2).  I won’t be surprised if muscarinic receptors will also be found in mitochondria some day as well.”

I highly recommend reading the entire post to understand the arguments as to why and how fluoroquinolones may be connected to ACh disorders.

Can fluoroquinolones trigger anti-ACh antibodies? Can fluoroquinolones trigger a form of myasthenia gravis? How are autoimmune diseases connected to ACh depletion? We know that inflammation is a feature of autoimmune diseases, and that ACh modulates inflammation. We also know that lack of vagal nerve tone is related to both inflammation and autoimmune diseases, and that ACh is produced by a healthy and toned vagal nerve. We know that many of the symptoms of fluoroquinolone toxicity resemble symptoms of various autoimmune diseases, including rheumatoid arthritis, Sjogren’s Syndrome, Lupus, M.S., etc. How are autoimmune diseases, vagal nerve tone, ACh production and/or depletion, and fluoroquinolones related?

I’m not sure of the answers to those questions (I’m not sure that anyone knows the correct answers to them), but I do think that both vagal nerve tone and ACh production and/or depletion is related to fluoroquinolone toxicity (more on that assertion can be found in this post – https://floxiehope.com/2015/06/13/hacking-fluoroquinolone-toxicity-via-the-nervous-system/).

How can floxies increase their ACh? One way to increase ACh is to eat foods that are rich in choline, a precursor to acetylcholine. Choline-rich foods include:

  • Eggs
  • Chicken
  • Fish
  • Liver
  • Nuts

Some herbs and supplements that can increase ACh are listed HERE and HERE. Interestingly, caffeine, which many floxies respond negatively to, is on the list of things that increase ACh, and the supplements noted that decrease ACh have reportedly helped some floxies. As with everything, caution is warranted, and it’s best to consult with a trusted medical professional before starting any supplement protocol.

Exercises and practices that stimulate the vagus nerve can also stimulate the production and movement of ACh. Some things that stimulate the vagus nerve include:

  • Meditation
  • Breathing deeply and slowly
  • Singing
  • Playing a wind instrument
  • Submerging your face in cold water
  • Gargling
  • Chanting “OM”
  • Laughter
  • Exercise
  • Massage
  • Acupuncture
  • Chiropractic adjustments
  • Positive social interactions

More information about the benefits of stimulating the vagus nerve can be found HERE and HERE.

Many of the vagal nerve stimulating exercises and practices listed above helped me in my recovery from fluoroquinolone toxicity. Meditation and mindfulness were key elements to my recovery. Acupuncture, massage, breathing exercises, and support from loved ones (positive social interaction), were key as well. Even though none of these exercises are “quick fixes” or “big guns,” they are healing practices, and the ACh and vagus nerve connection may be how they help to repair the body and mind.

I hope that some research is done into the connections between fluoroquinolones/fluoroquinolone toxicity and ACh. It’s reasonable to think that there are connections–they just need to be proven.

Until then…. meditate, breathe, laugh, and eat liver. They really do help.

 

flu tox get help you need banner click lisa

Hope Heals and Unites

Over the past 3.5 years, this site has morphed and changed, and it has accumulated a lot of valuable information. It started out as a place to tell stories of recovery from fluoroquinolone toxicity. Over time, it became a repository for hundreds of articles about fluoroquinolones, and I started to write posts that focused on research. Fluoroquinolone toxicity became a puzzle that I wanted to solve, and many of the posts on this site are about that detective-work. I went to Washington D.C. in order to advocate for change in how fluoroquinolones are prescribed, and I wrote about those experiences. With that, this site became an advocacy site, and changes to medical and pharmaceutical policies were put forth. This site has become a supportive community, and I am grateful beyond words for the hundreds of people who have contributed more than 15,000 comments to Floxie Hope. It has grown, it has morphed, it has become more substantial and more effective with each post, article, and comment. I’m proud of this little site.

Though all its forms and purposes add to its value, I think that the most important and useful thing about Floxie Hope is it’s core and original purpose–to be a place where people can share stories of healing, resilience, recovery, and, most importantly, HOPE.

Fluoroquinolone toxicity is different for each individual who experiences it. Some people have absolutely devastating reactions, while others get off more lightly. Everyone’s symptoms are different, everyone’s timeline is different, and what helps and hurts each person is different. Also, we all have different backgrounds, personalities, characters, and approaches to life and illness. No matter the severity of an individual’s illness, or personality, or approach to life (both optimists and pessimists, religious people and non-religious people, rich and poor, etc.), we all need, and benefit from, HOPE.

Hope is healing, and it is necessary for healing. It’s not the only factor in healing, and I don’t think that we should try to hope fluoroquinolone toxicity away without doing anything else, but it is a valuable component none the less.

I hope for recovery for all those who suffer from fluoroquinolone toxicity. I hope for change in how fluoroquinolones are prescribed. I hope for acknowledgement of the devastation that fluoroquinolones inflict on the lives of their victims. I hope for less suffering and more healing.

Can we all agree on that? Can we all agree that healing and recovery are valuable, and that they should be hoped for? Can we agree that too many people are getting hurt by fluoroquinolones, and that we should hope for change? I think that we can agree on those things. Hope unites.

There are differences in what changes people think should be made. Some people think that all fluoroquinolones should be taken off the market, others think that they should remain available but that their use should be restricted. Some people think that the pharmaceutical companies can and will discover a cure for fluoroquinolone toxicity (and all the other “rare” diseases and adverse drug reactions out there), while others see the pharmaceutical companies as the problem, not the solution. Some people think that the FDA should be abolished for not adequately protecting people from the harm that prescription drugs do, while others think that working with the FDA is the best way to enact meaningful change. Some people fight, some people forgive, some people do a combination of the two–they’re not mutually exclusive. Some people question all aspects of the pharmaceutical industry (including vaccines), others think that fluoroquinolones are a particular bad apple, but other drugs and vaccines are good and helpful. Some people warn against throwing the baby out with the bath-water, others want to burn the whole system down.

I have been many places on the continuum of opinions above. I can see the perspective of anyone who argues for any of those things. Though I try to err on the side of hope (and continuity–I’m not really a “burn the mother****** down” person, no matter how much I want change), I can even see the perspective of those who are angry, and who want to destroy the entire system that hurt them. Anger can even be seen as hopeful–hoping for change on a visceral, emotional level. The experience of getting floxed, and taking the time to really process my thoughts and emotions about all steps in the journey, has led me to be a more compassionate, open, understanding, and empathetic person. I see perspectives that I didn’t see before, and I understand and value them even when I don’t agree with them.

The floxie community is diverse, and we could focus on our differences. I don’t think we should though. I think we should focus on the things that unite us. Hope unites us. Healing and recovery unite us–no matter what form they take. We’re all trying to do our best to recover, and to make it through this crazy world we live in. We want our health and safety, and the health and safety of our loved ones, first and foremost. Acknowledgement and paradigm shifts are nice too. If we focus on our common goals and strengths, we can get further than we can if we focus on our differences. Hope unites and it heals. We all need hope.

May this site give you hope. May it bring people together. May it be a resource and a community. May you heal. May we all heal.

 

 

flu tox get help you need banner click lisa

Letter from Bayer to Doctors Regarding Cipro and Avelox

bayer-letter1

bayer-letter2

The above letter, from Bayer to health care professionals reads:

August 22, 2016

IMPORTANT DRUG WARNING

Subject: Important Changes in the Avelox (moxifloxacin hydrochloride) and Cipro (ciprofloxacin) Complete Prescribing Information – New Limitations of Use and Safety Information for Fluoroquinolones

Dear Health Care Professional:

Bayer HealthCare Inc. and Merck & Co., Inc. would like to inform you of imprtant changes to the prescribing information for fluoroquinolone antibiotics for systemic use in the United States, including Avelox (moxifloxacin hydrochloride) and Cipro (ciprofloxacin).

Limitation of Use and Safety Information for Fluoroquinolone Drugs

To communicate important safety information for fluoroquinolone antibiotics, the U.S. Food and Drug Administration (FDA) has requested that all license holders of these products, including Bayer for Avelox and Cipro, implement a class label change.

These labeling changes provide for revisions to the Indications and Usage section of the package insert to include a new limitation of use statement for acute bacterial sinusitis, uncomplicated urinary tract infections, acute uncomplicated cystitis, and acute bacterial exacerbation of chronic bronchitis, to reserve systemic fluoroquinolones for treatment in patients who have no alternative treatment options. In addition to the Boxed Warning, Warnings and Precautions, and Information for Patients sections of the package insert and the Medication Guide have been revised to include information regarding the risk of disabling and potentially irreversible serious adverse reactions of tendinitis and tendon rupture, peripheral neuropathy, and central nervous system effects that can occur together in the same patient.

The labels of fluoroquinolones already had a Boxed Warning for tendinitis, tendon rupture, and worsening myasthenia gravis. The labels also included warnings about the risks of peripheral neuropathy and central nervous system effects. Other serious risks associated with fluoroquinolones are described in the labels, such as cardiac, dermatologic, and hypersensitivity adverse reactions. This information about the risk of disabling and potentially irreversible serious adverse reactions is based on the FDA’s review of postmarketing adverse event reports from the FDA Adverse Event Reporting System (FAERS). This safety information was discussed at a November 5, 2015 joint meeting of the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee.

Prescriber Action:

Health care professionals should not prescribe systemic fluoroquinolones to patients who have other treatment options for acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis, acute uncomplicated cystitis, and uncomplicated urinary tract infections. Health care professionals should encourage patients to read the Medication Guide that describes the safety issues associated with fluoroquinolones. The Medication Guide is required to be given to the patient with each fluoroquinolone prescription. Stop fluoroquinolone treatment immediately if a patient reports serious side effects, and switch to a non-fluoroquinolone antibacterial drug to complete the patient’s treatment course.

Reporting Adverse Events:

Health care professionals are encouraged to report adverse events to FDA’s MedWatch reporting system by visiting www.fda.gov/medwatch or calling 1-800-FDA-1088.

If you wish to request further information for AVELOX, please contact Merck National Service Center at 1-800-526-4099. If you wish to request further information for CIPRO, please contact Bayer Service Center at 1-888-842-2937.

Please refer to the accompanying Important Information about AVELOX and CIPRO for complete indication and other important risks. Please also see the enclosed Prescribing Information, including BOXED WARNINGS and Medication guide for AVELOX and CIPRO.

Bayer HealthCare is the license holder for AVELOX and CIPRO. Under terms of a marketing agreement, Merck markets AVELOX in the United States.

Sincerely,

Dario F. Mirski, M.D.

Senior Vice President and Head Medical Affairs Americas

Bayer HealthCare Pharmaceuticals, Inc.

Enclosures: AVELOX and CIPRO Full Prescribing Information

 

The Avelox and Cipro prescribing information can be found HERE and HERE.

 

I’m honestly feeling speechless right now–I have no idea how to respond to this. The letter speaks for itself. I never thought I would see the words, “Health care professionals should not prescribe systemic fluoroquinolones to patients who have other treatment options for acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis, acute uncomplicated cystitis, and uncomplicated urinary tract infections,” or that doctors and patients alike should be warned of “disabling and potentially irreversible serious adverse reactions” of fluoroquinolones, or that, “the risk of disabling and potentially irreversible serious adverse reactions of tendinitis and tendon rupture, peripheral neuropathy, and central nervous system effects that can occur together in the same patient,” from Bayer. But, there it is, on Bayer letterhead–a letter to health care professionals regarding the real, serious, often permanent risks of fluoroquinolones.

I hope that this letter is being distributed far and wide, and that it reaches every doctor, P.A., nurse, and other medical provider in the country.

I hope that Johnson & Johnson sends out a similar letter regarding Levaquin (levofloxacin).

I hope that doctors heed these warnings, and stop prescribing fluoroquinolones outside of life-threatening situations.

I hope that these letters do something other than mitigate the risks and losses that Bayer anticipates from lawsuits having to do with the updated Cipro and Avelox warning labels.

I hope that some of the motivation for this letter is Bayer wanting to do the right thing and warn patients and health care providers alike about the dangerous side-effects of their drugs.

I hope that we in the “floxie” community can celebrate this. I see this letter as a very big deal. When I started this site in 2013, I didn’t think that I would ever see a letter like this. It, along with the warning label changes that prompted it, should be celebrated.

 

flu tox get help you need banner click lisa

 

Children are Being Hurt By Fluoroquinolone Antibiotics

It breaks my heart when I hear about children getting “floxed.” It’s bad enough that fluoroquinolones inflict pain, tendon tears and ruptures, dysglycemia, insomnia, psychiatric problems, autonomic nervous system disturbances, hormonal issues, and more, on adults–it’s horrifying when those things happen to children. Our children, our babies, our innocent and precious kids, are getting hurt by fluoroquinolones too. We try to protect our children–it’s our job to protect them. We trust that when we go to the pediatrician, he or she won’t poison our babies, but, tragically, sometimes pediatricians do, indeed, poison children with fluoroquinolones. Sometimes they prescribe Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Floxin/ofloxacin to children, and sometimes those children suffer devastating consequences from taking those drugs.

It is so incredibly wrong to give children drugs that can cause permanent pain and disability that I’m furious that it happens at all. I’m also furious that there aren’t any consequences for the various parties that allow fluoroquinolones to be prescribed to children. In case it needs to be said, hurting children, and chemically causing pain and disability for young boys and girls, is wrong.

It is well-documented that fluoroquinolones cause permanent lameness in juvenile animals and that they are contraindicated for the pediatric population. A review in U.S. Pharmacist notes that:

“Fluoroquinolones have demonstrated adverse effects on cartilage development in juvenile animals through the inflammation and destruction of weight-bearing joints.  These arthropathies were often irreversible, and their potential occurrence in children limited the use of fluoroquinolones in this population.  In one pediatric study, ciprofloxacin had a 3.3% (9.3% vs. 6.0%) absolute risk increase in musculoskeletal events within 6 weeks of treatment compared with control agents used to treat complicated UTIs or pyelonephritis. Adefurin and colleagues found a 57% increased relative risk of arthropathy in children given ciprofloxacin (21% overall) versus those in a non-fluoroquinolone comparator arm. In contrast to animal models, neither dose nor duration had an effect on the rate or severity of arthropathy.  A 2007 study by Noel and colleagues determined the incidence of musculoskeletal events (primarily arthralgias) to be greater in children treated with levofloxacin compared with nonfluoroquinolone-treated children at 2 months (2.1% vs. 0.9%; P = .04) and 12 months (3.4% vs. 1.8%; P = .03).  These results and the severity of the effects should be weighed heavily when initiation of fluoroquinolones is being contemplated in pediatric patients.”

To summarize, fluoroquinolones can cause irreversible musculoskeletal harm and in doing so, they can put an end to a child’s days of running, jumping, playing soccer, skiing, dancing, etc. Think about that for a second–a drug, an antibiotic no less, can cause permanent damage to the musculoskeletal system of a child. Fluoroquinolones also have serious CNS effects, and can cause psychiatric disturbances as well as loss of memory and concentration. Children, with their developing bodies and minds, should not be subjected to dangerous, disabling drugs that can set back their development and their lives.

Given the documented adverse effects of fluoroquinolones on children, and the black box warning that notes that they can cause disability, the following examples of children being hurt by fluoroquinolones are both infuriating and heartbreaking. Still, I think they should be shared, so as to warn other parents of the dangers of these drugs, and hopefully fewer children will get floxed in the future.

I have paraphrased the stories that I’ve heard, but all of these are true:

  1. A 16 year old boy has Cipro 17 times over the last 7 years. He has various health issues, including a problem with the bones in his feet. The pain in his feet is so bad that he has had to stop school and homeschool on the computer.
  2. A 9 year old took fluoroquinolone ear drops twice as a toddler and suffers with chronic foot and knee pain.
  3. A young woman was floxed 4 1/2 years ago at 16 years old. After about 2 years, she got better, eventually reaching about 90-95% better, only to have a relapse for no apparent reason about a year later (which is where we are now)! She has had MANY devastating side effects, and still cannot work. When she got her first job is when the relapse took place.
  4. A 15 year old girl passed away 6 days after her 10 day Levaquin script.
  5. An 8 year old girl had to quit all sports swimming and gymnastics. She is now going to school but no P.E., and no Dr. Wants to take responsibility for how to help with her pain. It’s been only 2 weeks since taking 3 days worth and then being hospitalized because of the effects.
  6. A 10 year old girl who cannot stand or walk, and no doctors believe her. 
  7. A 16 year old girl took 2 pills of 500 mg of cipro and now has nerve twitching, leg pain, anxiety, and a whole bunch of other symptoms. 

These are kids! They are children and adolescents who are being hurt by fluoroquinolones. They are suffering and there is nothing that doctors can do to relieve their pain. It’s beyond heartbreaking–it’s infuriating–and it needs to stop. The FDA needs to put enforceable restrictions on pediatric fluoroquinolone use. The doctors who prescribe fluoroquinolones to children need to be held accountable when they hurt children with fluoroquinolones (either through Medical Board punishment, or lawsuits). The pharmaceutical companies that make these dangerous drugs need to be punished and they need to compensate their victims. Researchers need to be looking into a cure for fluoroquinolone toxicity. All parties involved need to help these kids to recover, because there really isn’t anything okay about hurting a child.

fluoroquinolone-lawsuit-banner-trulaw

 

flu tox get help you need banner click lisa

Filing a Complaint with your State Medical Board

Iatrogenic Damage

Everyone who is suffering from fluoroquinolone toxicity has been hurt by the medical system–obviously. A prescription drug, an antibiotic no less, caused a multi-symptom illness that includes damage to connective tissue (tendons, ligaments, cartilage, muscle, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more, for those who are “floxed.” There are thousands of people who suffer from a myriad of adverse-effects as a result of taking Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, or other fluoroquinolone antibiotics. Despite the devastation that fluoroquinolones bring to their victims, and the fact that most symptoms are documented in various studies and on the FDA-published warning label, most victims of fluoroquinolones are unable to gain any sort of justice, retribution, or compensation for the damage done to them.

Justice System Failure

“Why don’t you just sue?” is a question that is commonly asked. While a complete answer to this question is more than I can give in this post, the short 2-part answer is that: A) People who are hurt by generic drugs cannot sue the maker of the drugs that hurt them, and B) If a symptom is listed on a drug warning label, you cannot sue for the drug causing that symptom. Most symptoms of fluoroquinolone toxicity are listed on the 43-page drug warning label, so if, for example, you suffer from toxic psychosis after taking a fluoroquinolone, you cannot sue for that severe and life-altering effect because “you were warned.” Never mind that few victims, and almost equally few medical professionals ever read the drug warning labels, much less the studies behind them.

Because suing is near-impossible for most victims of fluoroquinolones, thousands of people are left without any sense of justice or compensation for their losses.

What are fluoroquinolone-victims supposed to do? How are they supposed to get any sense of justice, retribution, or even acknowledgment or change?

Justice through State Medical Boards?

A recent note from a floxie friend gave me hope that some acknowledgement, and maybe some change, could come through filing complaints against the doctors (and other medical professionals) who are prescribing fluoroquinolones. Here’s her story:

My friend was an active senior citizen who enjoyed dancing before she was floxed. She is a petite vegan and was entirely healthy before she took ciprofloxacin. My friend recently filed a complaint with her State Medical Board against the Physician Assistant who prescribed her ciprofloxacin to treat an unconfirmed urinary tract infection. Her complaint asserted that the P.A. misdiagnosed her with a urinary tract infection and improperly prescribed fluoroquinolone antibiotics “which resulted in long term complications” (i.e. she got floxed).

My friend was pleasantly surprised when she received a letter back from the State Medical Board stating that they found that the P.A. was guilty of a “simple departure” from the standard of care. The letter explained that a simple departure from the standard of care is a “departure from the standard of practice,” and that “there must be two or more negligent acts or omissions before there is a violation of the Medical Practice Act.”

fluoroquinolone-lawsuit-banner-trulaw

Basically, this P.A. now has one strike against him, and if there is another Medical Board complaint against him, he can be found to be in violation of the Medical Practices Act, and disciplinary action can be taken.

Though I don’t know how the P.A. reacted to the findings, it is reasonable to assume that he isn’t happy about having one strike (of two) against his record. I would also guess that he’s not going to prescribe fluoroquinolones for unconfirmed UTIs (it turned out that my friend didn’t even have bacteria in her urine), and maybe he will refrain from prescribing fluoroquinolones again unless they are completely medically necessary. This, in itself, is progress. Having fewer doctors, P.A.s, and other medical professionals prescribing fluoroquinolones is a step in the right direction.

With the letter from her State Medical Board, my friend is approaching lawyers to see if any will take her case against the P.A. who prescribed her ciprofloxacin.

Perhaps filing complaints with State Medical Boards, and suing, doctors who hurt people through prescribing fluoroquinolones is one way to get change to happen.

Changing the System

If there are consequences for prescribing fluoroquinolones, perhaps more doctors will be cautious and prudent with them. If doctors hear of their associates having Medical Board disciplinary action taken against them, perhaps they will take the well-documented side-effects of fluoroquinolones seriously.

Fluoroquinolones are serious drugs with severe consequences. They should be prescribed with care and prudence, and, when they’re not, those who prescribe them inappropriately should face consequences.

If you were prescribed a fluoroquinolone inappropriately (the FDA recently changed the warning labels to note that fluoroquinolones should not be prescribed to treat bronchitis, uncomplicated cystitis, or sinus infections, and there are also documented reasons that athletes, children, people taking steroids or NSAIDs, immunocompromised individuals, and those with a history of psychiatric illness, should not be prescribed fluoroquinolones), your doctor should be reprimanded for inappropriately prescribing dangerous drugs to you–especially if those drugs hurt you.

I encourage everyone who was inappropriately prescribed fluoroquinolones to look into filing a complaint with your State Medical Board against the person who prescribed fluoroquinolones to you. Each State Medical Board has different forms and procedures, but you should be able to access them through Googling, “____(your State) Medical Board.”

I also encourage those whose fluoroquinolone side-effects were disregarded or ignored by doctors to file complaints with their State Medical Boards. The wide-ranging side-effects of fluoroquinolones are well-documented (HERE are hundreds of articles about the dangers of fluoroquinolones), and denial of documented drug side-effects is not appropriate. Perhaps with some Medical Board complaints, more acknowledgement of fluoroquinolone effects will come as well. That would certainly be nice, as acknowledgment is healing.

My friend has been empowered by the Medical Board findings, and I hope that she eventually gets justice. Disabling people with strong and consequential drugs, especially when they don’t even have an infection to begin with, is wrong. All “floxies” have to pay the consequences of taking fluoroquinolones with every loss that they sustain. Perhaps some of that burden should be shared by the doctors who inappropriately prescribe fluoroquinolones.

 

flu tox get help you need banner click lisa

FQ Toxicity Featured in The Healing Pain Summit

 

lbp-healing-pain-summit

 

I had the honor of being interviewed by Dr. Joe Tatta, DPT, CNS, for the Healing Pain Summit. In our interview, we discussed how fluoroquinolones can cause chronic pain and disability. Even before we spoke, Dr. Tatta was aware of fluoroquinolone toxicity and the pain and disability caused by fluoroquinolone antibiotics. He has treated several patients who have experienced the pain and trauma of fluoroquinolone toxicity. It was an honor to speak with a doctor as knowledgable, compassionate, and understanding as Dr. Tatta.

Please join me and Dr. Tatta, as well as an incredible panel of other guests (including Dr. Terry Wahls, Dr. Robyn Benson, Jessica Drummond, MSPT, CCN, Dr. Beth Darnall, Dr. Tyna Moore, DC, ND, Mira Dessey, Niki Gratrix, Dr. Jay Davidson, DC, Damian Dube, Dr. Reef Karim, Dr. Keesha Ewers, David Butler, PT, EdD, Marcelle Pick, OB/GYN NP, Karen Litzy, PT, DPT, Dr. Kim D’Eramo, Dr. Ann Shippy, MD, Dr. Mitchell Yass, By Debora Wayne, Dr. Ritamarie Loscalzo, MS, DC, CCN, DACBN, and Connie Zack – what a lineup!), for the Healing Pain Summit.

The Healing Pain Summit starts on Monday September 12th and goes through September 17th, 2016. You can register for the Summit for FREE through THIS LINK. After September 17th you can still access the interviews, but there is a charge for them.

I hope that The Healing Pain Summit helps those of you who are dealing with fluoroquinolone-induced pain!

I also hope that my participation in this wonderful event helps people to recognize that fluoroquinolones can cause chronic, and often debilitating, pain. I hope that my speaking out on the Healing Pain Summit helps people to “connect the dots.” There are a lot of people out there with fibromyalgia, chronic fatigue, joint pain, arthritis, rheumatoid arthritis, peripheral neuropathy, POTS, anxiety, and more, who have taken Cipro/ciprofloxacin, Levaquin/levofloxacin, or Avelox/moxifloxacin in the past, and those fluoroquinolones may have contributed to their painful conditions.

Please help me to spread the word about the pain caused by fluoroquinolones by sharing this post, with your doctors, friends, and loved ones. Thank you!!

Each guest on the Healing Pain Summit is offering a free gift to those who sign up. You can see the list of the free gifts HERE. The free gifts are incredibly useful and valuable, and I also hope that they help each of you!

A bit more about the Healing Pain Summit:

Through this expert event, Dr. Joe is completely rewriting the dialogue around pain, injury, healing and the growing epidemic of addiction to pain medications.

At no cost to you, Dr. Joe has gathered the top leaders in science and medicine to pull back the curtain and bring their top-notch, cutting-edge information on injury, illness, chronic pain, and pain management to you.  These are life-changing protocols and ideas that are just coming to light.

When you discover exactly how your body works and how to heal yourself naturally, you get your body working FOR you and not AGAINST you.

Thank you so much for joining me for the Healing Pain Summit! Also, a huge THANK YOU to Dr. Joe Tatta for including me and for the help in getting the word out about fluoroquinolone toxicity.

 

joe-tatta

Fluoroquinolone Mechanisms Chart

Bronwen made this AMAZING chart of fluoroquinolone damage mechanisms that lead to fluoroquinolone toxicity and disability:

Fluoroquinoline reaction chart updated Aug 2016

I know that people are sometimes reluctant to click on links, but I wasn’t able to make the chart into a jpg that I could fit on this page, so, links to the pdf are what I can give you. Please check it out–thanks!

Fluoroquinoline reaction chart updated Aug 2016

You can read about Bronwen’s journey through fluoroquinolone toxicity HERE. Bronwen has been incredibly generous in offering advice and guidance to those who comment on her story too. She is thoughtful, intelligent, insightful, and greatly appreciated!

Putting together the fluoroquinolone toxicity puzzle, and determining what is going on in our “floxed” bodies, is really difficult. Brownen’s chart is helpful, and it’s a wonderful thing to give to doctors and anyone else who is interested in learning about fluoroquinolone toxicity.

Bronwen used the “Dear Colleague” letter by Dr. Miriam J. de Jong as a resource for the chart, and I highly recommend that you check it out too. It can be read HERE.

I have compiled some additional resources for sorting out the fluoroquinolone toxicity puzzle that include:

Through working together, doing research, sharing information, and speaking out, maybe we can all get to the root of what, exactly, fluoroquinolone toxicity is. Once that is known, solutions will be easier to come by.

 

 

flu tox get help you need banner click lisa

Publicizing Fluoroquinolone Warnings

I have such mixed feelings about the FDA’s response to the November, 2015 Antimicrobial Drugs Advisory Committee meeting regarding fluoroquinolone safety. On one hand, I feel like they really did hear those who testified, and they not only listened, they responded in a way that showed that they listened. The FDA did what the Antimicrobial Drugs Advisory Committee recommended they do: they updated fluoroquinolone warnings to note that, “the serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with acute sinusitis, acute bronchitis, and uncomplicated urinary tract infections who have other treatment options.” They not only updated the warning labels, they updated the black-box warnings–the most severe warning a drug can have. I am truly grateful for the steps forward in acknowledging fluoroquinolone adverse-reactions, and I’m hopeful that the updated warning labels will lead physicians and patients to realize that fluoroquinolones are dangerous drugs with potentially devastating consequences.

I wonder though, what good is an updated warning label? In the post, Who Reads the Drug Warning Labels? I go over the problem of people not knowing what is on the warning labels. Are physicians going to read the updated warning labels? Are patients? Is anyone other than the “floxie” community going to realize that the warning labels have been changed?

I appreciate the action taken by the FDA–I really do–but are updated warning labels actually going to change anything? Will fewer people get injured and killed by fluoroquinolones? I certainly hope that a significant portion of doctors hear about the warning label changes, and stop prescribing fluoroquinolones, but, unfortunately, the FDA isn’t taking any major steps to make this happen.

The FDA has no plans to inform individual doctors about the recent warning label changes made to fluoroquinolone warning labels. Even though the black-box warnings, again–the most severe warning label a drug can receive, have been updated to note that fluoroquinolones are associated with disabling and potentially irreversible serious adverse reactions, the FDA is not going to tell doctors about the changes. No “dear doctor” letter will be issued by the FDA. They will not do a massive publicity campaign to let physicians or patients know that the warning labels have been updated. They know about the dangers of fluoroquinolones, and, in their own way, they acknowledge them, but they’re not proactively communicating what they know to patients or physicians.

Since the FDA isn’t going to issue a “dear doctor” letter, it will likely be helpful if we (the people in the fluoroquinolone toxicity community, and those who care about drug safety) give the information the FDA has released to our doctors, local hospitals, and media.

I encourage everyone reading this to please, please, please send this information (that is directly from the FDA) to your doctors, the media, your friends, your loved ones, and anyone else who you think may benefit from the information. People need to know how dangerous Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Factive/gemifloxacin are. In order for them to know how dangerous these drugs are, we need to tell them.

Please forward these FDA releases to those who need this information:

  1. 5/12/16 – Fluoroquinolone Antibacterial Drugs: Drug Safety Communication – FDA Advises Restricting Use for Certain Uncomplicated Infections
  2. 7/26/16 – FDA Drug Safety Communication: FDA updates warnings for oral and injectable fluoroquinolone antibiotics due to disabling side effects
  3. July, 2016 Drug Safety Labeling Changes

Since most people don’t actually click on links, I’m also going to copy and paste what the FDA notices said (feel free to share this post with anyone who needs the information too).

Fluoroquinolone Antibacterial Drugs: Drug Safety Communication – FDA Advises Restricting Use for Certain Uncomplicated Infections:

AUDIENCE: Internal Medicine, Family Practice, Pharmacy, Patient

ISSUE: FDA is advising that the serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with acute sinusitis, acute bronchitis, and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.

An FDA safety review has shown that fluoroquinolones when used systemically (i.e. tablets, capsules, and injectable) are associated with disabling and potentially permanent serious side effects that can occur together. These side effects can involve the tendons, muscles, joints, nerves, and central nervous system.

As a result, FDA is requiring the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs to be updated to reflect this new safety information. FDA is continuing to investigate safety issues with fluoroquinolones and will update the public with additional information if it becomes available.

See the FDA Drug Safety Communication for a list of currently available FDA approved fluoroquinolones for systemic use.

BACKGROUND: The safety issues described in the Drug Safety Communication were also discussed at an FDA Advisory Committee meeting in November 2015.

RECOMMENDATION: Patients should contact your health care professional immediately if you experience any serious side effects while taking your fluoroquinolone medicine. Some signs and symptoms of serious side effects include tendon, joint and muscle pain, a “pins and needles” tingling or pricking sensation, confusion, and hallucinations. Patients should talk with your health care professional if you have any questions or concerns.

Health care professionals should stop systemic fluoroquinolone treatment immediately if a patient reports serious side effects, and switch to a non-fluoroquinolone antibacterial drug to complete the patient’s treatment course.

Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA’s MedWatch Safety Information and Adverse Event Reporting Program:

  • Complete and submit the report Online: www.fda.gov/MedWatch/report

  • Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178

FDA Drug Safety Communication: FDA updates warnings for oral and injectable fluoroquinolone antibiotics due to disabling side effects:

SAFETY ANNOUNCEMENT

The U.S. Food and Drug Administration (FDA) approved changes to the labels of fluoroquinolone antibacterial drugs for systemic use (i.e., taken by mouth or by injection). These medicines are associated with disabling and potentially permanent side effects of the tendons, muscles, joints, nerves, and central nervous system that can occur together in the same patient. As a result, we revised the Boxed Warning, FDA’s strongest warning, to address these serious safety issues. We also added a new warning and updated other parts of the drug label, including the patient Medication Guide.

We have determined that fluoroquinolones should be reserved for use in patients who have no other treatment options for acute bacterial sinusitis, (ABS), acute bacterial exacerbation of chronic bronchitis (ABECB), and uncomplicated urinary tract infections (UTI) because the risk of these serious side effects generally outweighs the benefits in these patients. For some serious bacterial infections the benefits of fluoroquinolones outweigh the risks, and it is appropriate for them to remain available as a therapeutic option.

Patients must contact your health care professional immediately if you experience any serious side effects while taking your fluoroquinolone medicine. Some signs and symptoms of serious side effects include unusual joint or tendon pain, muscle weakness, a “pins and needles” tingling or pricking sensation, numbness in the arms or legs, confusion, and hallucinations. Talk with your health care professional if you have any questions or concerns (see List of Serious Side Effects from Fluoroquinolones).

Health care professionals should not prescribe systemic fluoroquinolones to patients who have other treatment options for acute bacterial sinusitis (ABS), acute bacterial exacerbation of chronic bronchitis (ABECB), and uncomplicated urinary tract infections (UTI) because the risks outweigh the benefits in these patients. Stop fluoroquinolone treatment immediately if a patient reports serious side effects, and switch to a non-fluoroquinolone antibacterial drug to complete the patient’s treatment course (see List of Currently Available FDA-approved Fluoroquinolones for Systemic Use).

Fluoroquinolones are antibiotic medicines that work by killing or stopping the growth of bacteria that can cause illness. They are FDA-approved to prevent or treat certain serious bacterial infections.

The labels of fluoroquinolone medicines already have a Boxed Warning for tendinitis, tendon rupture, and worsening of myasthenia gravis. The labels also include warnings about the risks of peripheral neuropathy and central nervous system effects. Other serious risks associated with fluoroquinolones are described in the labels, such as cardiac, dermatologic, and hypersensitivity reactions. After FDA’s 2013 review that led to the additional warning that peripheral neuropathy may be irreversible, FDA evaluated post-marketing reports* of apparently healthy patients who experienced disabling and potentially permanent side effects involving two or more body systems after being treated with a systemic fluoroquinolone (see Data Summary). We evaluated only reports submitted to FDA, so there are likely additional cases of which we are unaware. The side effects occurred within hours to weeks after starting the fluoroquinolone, and at the time we received the reports, the side effects had continued for an average of 14 months to as long as 9 years after stopping the medicines. Several cases reported that some side effects stopped or improved after discontinuation of the medicine; others reported the side effects worsened or continued.

We previously communicated about these safety issues associated with fluoroquinolones in May 2016. Additional communications about related safety issues associated with fluoroquinolones occurred in August 2013 (peripheral neuropathy) and July 2008 (tendinitis and tendon rupture). The safety issues described in this Drug Safety Communication were also discussed at an FDA Advisory Committee meeting in November 2015.

In addition to updating information in the Boxed Warning, we are also including information about these safety issues in the Warnings and Precautions section of the label. The Indications and Usage section contains new limitation-of-use statements to reserve fluoroquinolones for patients who do not have other available treatment options for acute bacterial sinusitis (ABS), acute bacterial exacerbation of chronic bronchitis (ABECB), and uncomplicated urinary tract infections (UTI). The patient Medication Guide that is required to be given to the patient with each fluoroquinolone prescription describes the safety issues associated with these medicines. We are continuing to assess safety issues with fluoroquinolones as part of FDA’s usual ongoing review of drugs and will update the public if additional actions are needed.

We urge health care professionals and patients to report side effects involving fluoroquinolone antibacterials and other drugs to the FDA MedWatch program, using the information in the “Contact FDA” box at the bottom of the page.

ADDITIONAL INFORMATION FOR PATIENTS

  • Fluoroquinolone antibiotic medicines are associated with disabling and potentially permanent serious side effects that can occur together in the same patient and should not be used to treat certain uncomplicated infections. These uncomplicated infections include acute bacterial sinusitis (ABS), acute worsening of bacterial chronic bronchitis (ABECB), and uncomplicated urinary tract infections (UTI).
  • These side effects can involve the tendons, muscles, joints, nerves, and central nervous system, and can occur within hours to weeks after starting a fluoroquinolone medicine.
  • FDA has updated the Boxed Warning in the labels, added new warnings, and has revised the patient Medication Guide of all fluoroquinolone antibiotics.
  • Contact your health care professional immediately if you experience any serious side effects while you are taking your fluoroquinolone medicine.
  • Before starting a new fluoroquinolone medicine, inform your health care professional if you have previously experienced any serious side effects with another antibiotic.
  • Serious side effects involving the tendons, muscles, joints and nerves include:
    • Swelling or inflammation of the tendons
    • Tendon rupture
    • Tingling or pricking sensation (“pins and needles”)
    • Numbness in arms or legs
    • Muscle pain
    • Joint pain
    • Joint swelling
  • Serious central nervous system side effects include:
    • Depression
    • Hallucinations
    • Suicidal thoughts
    • Confusion
    • Anxiety
  • Other side effects include:
    • Abnormally rapid or irregular heart beat
    • Ringing or buzzing in the ears
    • Vision problems
    • Skin rash
    • Sensitivity of skin to sunlight
    • Headache
    • Trouble falling asleep
    • Fatigue
  • Read the patient Medication Guide you receive with your fluoroquinolone antibiotic prescriptions, which explains the benefits and risks of the medicine.
  • Talk to your health care professional if you have questions or concerns about fluoroquinolone antibiotic medicines.
  • We communicated safety information associated with fluoroquinolones in May 2016, August 2013, andJuly 2008.
  • Report side effects from a fluoroquinolone or any drug to your health care professional and the FDA MedWatch program, using the information in the “Contact FDA” box at the bottom of this page.

ADDITIONAL INFORMATION FOR HEALTH CARE PROFESSIONALS

  • FDA has approved label changes that reserve the use of fluoroquinolone antibacterial medicines when treating acute bacterial sinusitis (ABS), acute bacterial exacerbation of chronic bronchitis (ABECB), and uncomplicated urinary tract infections (UTI) for patients who do not have alternative treatment options.

  • FDA has also updated the Boxed Warning and the Warnings and Precautions sections of the labels and revised the patient Medication Guide of the fluoroquinolone drug class to describe the serious risk of multiple disabling and potentially irreversible adverse reactions that can occur together.

  • These adverse reactions primarily include tendinitis and tendon rupture, muscle pain, muscle weakness, joint pain, joint swelling, peripheral neuropathy, and central nervous system effects.

  • The adverse reactions can occur within hours to weeks after starting treatment with a fluoroquinolone medicine.

  • Discontinue the fluoroquinolone medicine immediately at the first signs or symptoms of any serious adverse reaction.

  • Avoid fluoroquinolones in patients who have previously experienced serious adverse reactions associated with fluoroquinolones.

  • Serious Adverse reactions of the musculoskeletal system and peripheral nervous system include:

    • Tendinitis/Tendon rupture

    • Muscle pain

    • Muscle weakness

    • Joint pain

    • Joint swelling

    • Peripheral Neuropathy

    • Serious Central nervous system effects include:

      • Psychosis
      • Anxiety
      •  Insomnia
      • Depression
      • Hallucinations
      • Suicidal thoughts
      • Confusion
    • Other adverse reactions include:

      • Exacerbation of myasthenia gravis
      • Prolongation of the QT interval
      • Hypersensitivity reactions/anaphylaxis
      • Photosensitivity/phototoxicity
      • Blood glucose disturbances
      • Clostridium difficile-associated diarrhea
    • Encourage patients to read the Medication Guide that they receive with their fluoroquinolone prescriptions.

    • FDA convened a public advisory committee meeting in November 2015 to discuss the risks and benefits of fluoroquinolone antibacterial medicines for the treatment of ABS, ABECB, and uncomplicated UTI. We also communicated safety information associated with fluoroquinolones in May 2016, August 2013, and July 2008.

    • Report adverse reactions involving a fluoroquinolone or any drug to the FDA MedWatch program, using the information in the “Contact FDA” box at the bottom of this page.

fluoroquinolone-lawsuit-banner-trulaw

Levaquin/levofloxacin Warning Label Changes (Please see July, 2016 Drug Safety Labeling Changes for the other fluoroquinolone label changes:

BOX WARNING (revised)

WARNING: SERIOUS ADVERSE REACTIONS INCLUDING TENDINITIS, TENDON RUPTURE, PERIPHERAL NEUROPATHY, CENTRAL NERVOUS SYSTEM EFFECTS AND EXACERBATION OF MYASTHENIA GRAVIS

  • Fluoroquinolones, including LEVAQUIN®, have been associated with disabling and potentially irreversible serious adverse reactions that have occurred together including:
    • Tendinitis and tendon rupture
    • Peripheral neuropathy
    • Central nervous system effects
  • Discontinue LEVAQUIN immediately and avoid the use of fluoroquinolones, including LEVAQUIN, in patients who experience any of these serious adverse reactions. Fluoroquinolones, including LEVAQUIN, may exacerbate muscle weakness in patients with myasthenia gravis. Avoid LEVAQUIN in patients with known history of myasthenia gravis.
  • Because fluoroquinolones, including LEVAQUIN, have been associated with serious adverse reactions, reserve LEVAQUIN for use in patients who have no alternative treatment options for the following indications:
    • Acute exacerbation of chronic bronchitis
    • Acute uncomplicated cystitis
    • Acute sinusitis

WARNINGS AND PRECAUTIONS

Disabling and Potentially Irreversible Serious Adverse Reactions Including Tendinitis and Tendon Rupture, Peripheral Neuropathy, and Central Nervous System Effects (addition)
  • Fluoroquinolones, including LEVAQUIN, have been associated with disabling and potentially irreversible serious adverse reactions from different body systems that can occur together in the same patient. Commonly seen adverse reactions include tendinitis, tendon rupture, arthralgia, myalgia, peripheral neuropathy, and central nervous system effects (hallucinations, anxiety, depression, insomnia, severe headaches, and confusion). These reactions can occur within hours to weeks after starting LEVAQUIN. Patients of any age or without pre-existing risk factors have experienced these adverse reactions.
  • Discontinue LEVAQUIN immediately at the first signs or symptoms of any serious adverse reaction. In addition, avoid the use of fluoroquinolones, including LEVAQUIN, in patients who have experienced any of these serious adverse reactions associated with fluoroquinolones.
Tendinitis and Tendon Rupture replaces Tendinopathy
  • Fluoroquinolones, including LEVAQUIN, have been associated with an increased risk of tendinitis and tendon rupture in all ages. This adverse reaction most frequently involves the Achilles tendon, and has also been reported with the rotator cuff (the shoulder), the hand, the biceps, the thumb, and other tendons. Tendinitis or tendon rupture can occur, within hours or days of starting LEVAQUIN, or as long as several months after completion of fluoroquinolone therapy… Tendinitis and tendon rupture can occur bilaterally.
  • The risk of developing fluoroquinolone-associated tendinitis and tendon rupture is increased in patients over 60 years of age, in patients taking corticosteroid drugs, and in patients with kidney, heart or lung transplants. Other factors that may independently increase the risk of tendon rupture include strenuous physical activity, renal failure, and previous tendon disorders such as rheumatoid arthritis. Tendinitis and tendon rupture have also occurred in patients taking fluoroquinolones who do not have the above risk factors. Discontinue LEVAQUIN immediately if the patient experiences pain, swelling, inflammation or rupture of a tendon. Avoid fluoroquinolones, including LEVAQUIN, in patients who have a history of tendon disorders or have experienced tendinitis or tendon rupture.
Peripheral Neuropathy (new sentences added)
  • Fluoroquinolones, including LEVAQUIN, have been associated with an increased risk of peripheral neuropathy. Cases of sensory…
  • …minimize the development of an irreversible condition…Avoid fluoroquinolones, including LEVAQUIN, in patients who have previously experienced peripheral neuropathy.

ADVERSE REACTIONS

  • The following serious and otherwise important adverse drug reactions are discussed in greater detail in other sections of labeling:
    • Disabling and Potentially Irreversible Serious Adverse Reactions (addition)
    • Tendinitis and Tendon Rupture (replaces Tendon Effects)

PATIENT COUNSELING INFORMATION

Serious Adverse Reactions
  • Advise patients to stop taking LEVAQUIN if they experience an adverse reaction and to call their healthcare provider for advice on completing the full course of treatment with another antibacterial drug. Inform patients of the following serious adverse reactions that have been associated with LEVAQUIN or other fluoroquinolone use:
  • Disabling and potentially irreversible serious adverse reactions that may occur together: Inform patients that disabling and potentially irreversible serious adverse reactions, including tendinitis and tendon rupture, peripheral neuropathies, and central nervous system effects, have been associated with use of LEVAQUIN and may occur together in the same patient. Inform patients to stop taking LEVAQUIN immediately if they experience an adverse reaction and to call their healthcare provider. (addition)
  • Tendinitis and tendon rupture replaces Tendon Disorders

MEDICATION GUIDE

What is the most important information I should know about LEVAQUIN?

Tendon rupture or swelling of the tendon (tendinitis).

  • Stop taking LEVAQUIN immediately and get medical help right away…
  • Worsening of myasthenia gravis (a problem that causes muscle weakness). Tell your healthcare provider if you have a history of myasthenia gravis before you start taking LEVAQUIN. (addition)

What is LEVAQUIN?

  • LEVAQUIN should not be used in patients with acute exacerbation of chronic bronchitis, acute uncomplicated cystitis, and sinus infections, if there are other treatment options available.
  • LEVAQUIN should not be used as the first choice of antibacterial medicine to treat lower respiratory tract infections cause by a certain type of bacterial called Streptococcus pneumoniae.

Before you take LEVAQUIN, tell your healthcare provider if you:

  • have a disease that causes muscle weakness (myasthenia gravis); LEVAQUIN should not be used in patients who have a known history of myasthenia gravis.
  • have nerve problems; LEVAQUIN should not be used in patients who have a history of a nerve problem called peripheral neuropathy

How should I take LEVAQUIN?

Do not skip any doses of LEVAQUIN, or stop taking it, even if you begin to feel better, until you finish your prescribed treatment unless:

  • you have nerve problems. See “What is the most important information I should know about LEVAQUIN?”

  • you have central nervous system problems. See “What is the most important information I should know about LEVAQUIN?”

     

All help in spreading the word about these FDA warnings will be greatly appreciated!

 

flu tox get help you need banner click lisa

 

First Do No Harm – By Barbara Arnold

The following was written by Barbara Arnold and published in a magazine aimed toward ex-pats living in Spain. When Barbara sent it to me she said, “If it saves one person from taking this poison, then I will be happy. I am trying to get it translated to Spanish so I can send it to the Spanish papers here.
I urge every floxie that is well enough to try and get articles published in any magazine local paper etc. It’s certainly helped me focus my anger in a positive way, and maybe eventually it will become better known about.”

I also encourage all of my floxie friends to write something like what Barbara wrote below. It is important to focus your anger in a positive way, and it is even healing. Writing, advocating, and helping others through this mess have been vital parts of my healing process. I suspect that those things can be healing for other people as well, and I encourage each of my floxie friends to write, advocate, and help others in whatever way you feel comfortable. 

Thank you, Barbara, for speaking out and passionately advocating for those in medicine to think about the Hippocratic Oath when they prescribe fluoroquinolones!

FIRST DO NO HARMWritten by Barbara Arnold.

Before Doctor can practice they have to take “The Hippocratic oath”, First do no harm. Unfortunately harm is being done to hundreds of thousands, maybe even millions of people across the world by Doctors prescribing antibiotics from a group called FLUOROQUINOLONES.

For me, it all started nearly 2 years ago when I went to the Doctor with bronchitis. I had no idea then that my life was about to change, in the most awful drastic way possible and that for the next two years to date I would still be  suffering from the debilitating side effects from ciprofloxacin an antibiotic from the group called FLUOROQUINOLONES. At the same time I was given cortisone injections the result of which was like a bomb going off in my body. It started with searing pain in my Achilles tendons, at the time I stupidly believed that it was caused by changing my high heeled shoes to low heels and then walking to far. I had no idea that my body was being POISONED by a treatment for a simple thing like Bronchitis. I had great difficulty walking but I believed it would soon get better. HOW WRONG I WAS. 

I had mentioned to the nurse who was administrating the cortisone injection that I was having trouble walking, and did he think it was anything to do with the injections. He told me it couldn’t be as cortisone is an anti-inflammatory. At this point I did not connect the dots. I later found out these drugs are contra indicated to anyone over 60yrs and even worse especially alongside cortisone injections. Fluoroquinolones leach magnesium from the cells and as you get older you have less magnesium to begin with. The pain got worse to the point I ruptured a tendon causing a bruise the size of “England” on the inside of my right leg and I could   barely walk a few yards. At the same time I started to get Chronoc Fatigue to the point where I could hardly keep my eyes open. I had dizziness and balance problems.

For the next three months and many visits to my Doctor, I eventually saw a Rheumatologist who diagnosed my condition as “side effects of ciprofloxacin”.

From that point onwards I started to do my own research on Fluoroquinolones. The results were MIND BLOWING I found out that these antibiotics were being used for simple bladder infections, bronchitis and sinus infections. This was the equivalent of using a sledge hammer to kill a fly. There are many other safer antibiotics that could be used without the devastating side effects that can be caused by Fluoroqinolones. I was told I was a RARE CASE and that my Doctor had never heard of this before. Unfortunately this is totally untrue, as the symptoms of fluoroquine poisoning are vast and in some people the reaction does not occur until months later. Therefore a lot of misdiagnosis is going on. Here are some of the symptoms that can occur but are not limited to, weeks or even months later.

MUSCULOSKELETAL DAMAGE WITH DEGENERATION OF CARTILAGE AND TENDONS. DAMAGE TO THE MITOCHONDRIA (the power cells that give us energy} DETATCHED RETINAS, NEURO PROBLEMS, ANXIETY, PANIC ATTACKS. PERIPHERAL NEUROPATHY IE, BURNING, DAMAGED NERVES,, PAIN, OXIDATIVE DAMAGE IN MAMMALIAN CELLS, CELL DEATH, INSOMNIA, DIFFICULTY BREATHING, PALPITATIONS, SKIN RASH, VOMITING, HIVES LOSS OF MUSCLE STRENGTH, BRAIN FOG. These are just a few of fluoroquinolone poisoning symptoms. There are many many more.

As things got worse I had to result to using  a wheelchair as it was extremely painful to walk. As well as the pain, my legs felt like I was dragging along lead weights. During the months that followed I had various blood tests which showed NOTHING apart from high ferritin levels. I was referred to another Rheumatologist who treated me more or less with contempt as no test she did showed anything wrong. I had  learned that there was a BLACK BOX WARNING in America about this group of antibiotics and when I told her about this, that the Black Box Warning is the highest warning you can get in America, she scoffed at me and declared “This is Spain not America.”  This kind of arrogance and ignorance is allowing others to suffer in the most devastating ways. Subsequently, some 18 months later, the Food and Drug Administration has just issued an advisory to ALL DOCTORS IN THE UNITED STATES, to cease using these dangerous drugs to all patients unless it is a life or death situation.

I have spent thousands of pounds in natural supplements trying to cure myself as Doctors do not have any answers. However there are some Doctors willing to listen now as they or some-one in their family have been effected. by this group of chemotherapy drugs. YES they are chemo drugs because they destroy good cells as well as bad. They do damage down to the very DNA and in some people they leave permanent nerve damage. I am presently seeing an integrative Doctor who is also a Medical Doctor. He is in Marbella and I have to travel 5 hours to see him. I have no choice if I want to recover. The medical health care system here poisoned me and now I have to heal myself with all the costs that, that incurs.

I fully understand that Doctors do the best they can and cannot be expected to know the side effects of every drug they prescribe, but this group of drugs are completely different as they are one of the most dangerous drugs on the market, It was the responsibility of the  health representatives to inform Doctors of this. They were negligent in their duty of care and because of that I, and many other’s have been sentenced to years of suffering. This has been known about since the 1970’s. The attitude of the pharmaceutical companies beggars belief. It is only now with the event of the world-wide web that this is becoming common knowledge   If you think you have been effected by any of these drugs go to http://www.floxiehope.com. There is a mine of information there from fellow sufferers and Doctors who are now beginning to take notice. I urge every-one that reads this to be very very careful that you are not prescribed any antibiotic from this group namely ….CIPROFLOXACIN, LEVAQUIN/LEVOFLOXACIN, AVELOX/MOXIFLOXACIN OR FLOXIN/OFLOXACIN.

To conclude, not everyone that takes these drugs suffers the side effects initially but eventually maybe years later this has been known to happen. There are likely genetic factors that make some people  more susceptible to suffer adverse reactions to fluoroquinolones than others. Human bodies are complex and how a drug reacts in a human body is difficult to predict. I just wish Doctors took their  “Hippocratic Oath” more seriously and FIRST DO NO HARM.

flu tox get help you need banner click lisa

August catch-up

I haven’t written a post for Floxie Hope in a while, and I apologize for that!

A lot has taken place in both my personal life and in “floxie” news since I last posted on this site. My thoughts on all matters personal and professional are a bit jumbled at the moment, so this post is just going to be a bit of a hodgepodge.

First and foremost, the FDA announced the warning label changes for fluoroquinolones. Please see “FDA Drug Safety Communication: FDA updates warnings for oral and injectable fluoroquinolone antibiotics due to disabling side effects” for more information about this. The CBS News article, “Class of antibiotics gets stronger warning due to dangerous side effects” is a succinct article to show your loved ones too. I will write more about this important update shortly–just as soon as my life calms down. If you want my quick opinion–I think it’s a huge step in the right direction and I hope that it will keep many others from getting hurt by fluoroquinolones.

I haven’t written more extensively about the warning label changes because I’ve been busy in my personal life. The main thing I’ve been busy with is…

I got married!

Wedding Lisa Mark

The wedding was beautiful and perfect and I couldn’t be happier! 🙂

When I first got floxed I was scared that I wouldn’t ever be able to find love and acceptance. Those fears faded with time and healing, and this past weekend I was able to marry the love of my life, Mark. It was an incredible day and I look forward to years of happiness with my amazing husband!

In marrying Mark, I not only gained a wonderful husband, I also gained many new family members, including three amazing step-kids. Mark’s kids live in Michigan with their mom most of the time, but they have been staying with us in Colorado for the last several weeks. They’re wonderful kids, and I enjoy them immensely! I’m not sure if it makes me a good or bad step-mom to note this next thing, but, man, keeping up with kids is difficult! I’m semi-exhausted most of the time – and that’s with healthy, happy, good kids, and a fully recovered (from FQ toxicity) body and mind. People who parent while sick (with FQ toxicity or any other illness), or who parent sick kiddos, have my undying admiration and respect. I don’t know how you do it, but you do, and you deserve props and recognition for the effort involved.

Even though I’m semi-exhausted from wedding planning and execution, as well as from keeping up with the kids, I think that it’s a normal level of exhaustion for a 36-year-old doing what I’m doing. I have all the “spoons” I think I would have if I had never taken ciprofloxacin. I was more exhausted more frequently when I was going through the depths of fluoroquinolone toxicity. Over time (and I think that supplementing iron helped me immensely – though I don’t supplement it regularly any longer), my energy levels have returned to normal. I hope that my noting of getting my energy back helps others to have hope that their energy can return too.

Thank you to all in the floxie community who wished me well on my nuptials on facebook! It is great to have your support and well-wishes! I consider many in the floxie community to be friends, and each of you are appreciated!

If anyone reading this feels inclined, it would be wonderful to read a post about how fluoroquinolone toxicity has stolen your energy and/or ability to parent. If you want to write about that, Hormones Matter is always looking for new writers, and it’s a good site to tell personal health stories/journeys. Here’s info on how to write for Hormones Matter –  https://www.hormonesmatter.com/write-for-hormones-matter/. If you have another topic that you’d like to write about for Hormones Matter, feel free to reach out about anything health-related that is on your mind.

I have been referring people to this post – https://floxiehope.com/2015/10/12/im-floxed-now-what/ and this site – http://fluoroquinolonethyroid.com/ – often lately. Please check both out!

Those are my updates for the moment. Sorry for this being such a random and disjointed post! I hope that you all are finding help, hope, information, and recovery!

Hugs,

Lisa

flu tox get help you need banner click lisa

 

 

The Risk in the Remedy

For better or for worse, there is no one-size-fits-all method for recovery from getting floxed. Some people are helped by supplements, others can’t tolerate them, or even feel worse when taking them. Some people are helped by acupuncture, others think acupuncture is a waste of time and money. Some people are helped by physical therapy, others aren’t. Some people are helped by specific diets, others feel better when they don’t restrict what they eat. Some people are helped by nutritional IVs, others aren’t – and some people have even been hurt by them. As of right now, there is no right way to get through fluoroquinolone toxicity. There is no single supplement, or diet, or exercise, or practice, or IV, or food that cures everybody.

Even though we are lacking a specific cure for fluoroquinolone toxicity, there are people who recover. Each recovery journey is different, and the differences between the various recovery journeys can be hopeful or frustrating, depending on your perspective. The recovery stories on Floxie Hope (59 stories have been published so far) offer a tremendous amount of insight and information, and, more importantly, they offer hope. They let people know that recovery is possible, and hearing that other people have recovered is important for those currently going through the “flox bomb” going off in their body.

Because there is so little research into cures for fluoroquinolone toxicity, the information in the recovery stories and the support group forums is often seen as the only advice and guidance available to floxies. Though the recovery stories and comments on Floxie Hope (and the FB support groups) are intended to be helpful, and it is hoped that what helps one person can help another, it should be noted that everyone’s journey through fluoroquinolone toxicity is different, and what works for one person may not work for another. We all have different genes, different microbiomes, different hormone levels, different toxin loads, different viral loads, different liver function, different tolerances for each treatment, etc. There is no one-size-fits-all solution for fluoroquinolone toxicity, and what helps one person may not only not help another person, it may actually hurt them.

I encourage you to approach any and all remedies for fluoroquinolone toxicity with caution, thoughtfulness, and guidance from someone with an outside perspective or, even better, medical expertise.

Many floxies distrust doctors. It’s reasonable to distrust them – doctors played a role in poisoning each of us, then many people face denial and derision from doctors post-flox. But if you can find a doctor who you trust, who is open-minded, and who is willing to run multiple tests for you, his or her guidance can be incredibly valuable.

This disclaimer is posted at the bottom of each story on Floxie Hope:

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

People typically pay little attention to disclaimers, but I really want people to read and heed that one when they read the stories on Floxie Hope.

There is a lot of wonderful information on Floxie Hope, and each story is the 100% true story of the person who experienced/told/wrote it. They each shared their story to help others. But, for better or for worse, their story is not your story. We’re all different.

I certainly don’t want to discourage people from trying things that they think will be helpful in their recovery journey. I just want people to realize that we all react differently to different remedies, and that invasive and/or risky remedies should not be taken lightly.

The recommendations for fluoroquinolone toxicity recovery that people give can be broken up into three general categories–things that can’t hurt, things that are unlikely to do harm, and things that have some risk and can potentially do harm. It seems excessive to say that you need medical advice before doing the things that can’t hurt – like meditation or having a positive attitude. Likewise, for the things that are unlikely to hurt you, like changing your diet in a non-drastic way or taking epsom-salt baths, asking a doctor first is probably not necessary (in my opinion, but feel free to consult a doctor if you feel differently). But, for things that some people have reported being hurt by (and other people have reported that these things have helped them too – there’s that side as well) like nutritional IVs, essential oils, and even supplements, it’s probably best to consult with a doctor before going forward with those remedies.

Just…. be careful, my friends. We all want to get better, and it breaks my heart a bit when someone reports feeling worse after trying something mentioned on Floxie Hope. We’re all trying to get better and/or help others. Please just approach the remedies that have risk associated with them with caution…. and consult your doctor when necessary.

 

AnxietySummit4_small_group2016_v3

All of the recordings for The Anxiety Summit are available for purchase. I am one of the interviewees. 🙂

 

Discussing Fluoroquinolone Toxicity on Lyme Ninja Radio

Lyme Ninja

I had the pleasure and honor of being interviewed by Mackay Rippey for Episode 92 of Lyme Ninja Radio. Please check it out and share it with your friends:

http://lymeninja.com/92-lisa-bloomquist/

Too many people with Lyme Disease have been poisoned by fluoroquinolones. Fluoroquinolones are dangerous, cell-destroying drugs that add insult to injury for people who are already suffering from Lyme Disease. I understand that people with Lyme often need to use antibiotics to fight the Lyme infection, but fluoroquinolones can do more harm than good for people already suffering from multi-symptom, chronic illness. There are safer antibiotics available. I encourage all of my friends with Lyme Disease to seek safer antibiotics to treat their disease.

Here is a post about Lyme and Fluoroquinolone Toxicity – Lyme Disease and Fluoroquinolone Antibiotics.

Thanks for listening!

 

flu tox get help you need banner click lisa

1,000,000 Views!

Screen Shot 2016-06-22 at 3.58.08 PM

Floxie Hope just surpassed ONE MILLION views! Whoo hoo!

A lot of people have learned about fluoroquinolone toxicity through reading the stories and posts on this site, and I’m pleased beyond words about that! From reading the stories and posts on Floxie Hope, thousands of people have learned about how fluoroquinolones can cause multi-symptom, often chronic, illness. It is a pleasure and an honor to be informing people and spreading the word about the dangers of these drugs. More than that, it’s a pleasure and an honor to be offering hope and support to people who are going through fluoroquinolone toxicity. Floxie Hope wasn’t started to raise awareness – that’s just a lovely byproduct – it was started to offer hope for healing to people going through fluoroquinolone toxicity. It was started to let people know that recovery is possible, and to tell them that they too can make it through the mess of fluoroquinolone toxicity. I hope that with each of the 1,000,000+ times this site was viewed the person visiting gained a little more strength, and a little more hope.

Healing is possible. Recovery is possible. Try to believe it. It can be difficult to believe that recovery can happen when going through the depths of fluoroquinolone toxicity, but keep trying. Keep believing that you will improve. You will.

I should acknowledge the people who don’t recover from fluoroquinolone toxicity, and I hope that those who are still ill after years of struggling, who know that they will never fully recover, realize that I don’t mean any disrespect to them. I think that hope is important for all of us, even those who are forever changed by these horrible drugs. We all need hope, even if it’s hope for tomorrow to be better, not hope for a full recovery.

This site has gotten far more traction, and far more attention, than I could have envisioned when I started it in 2013. What I’m more proud of than the 1,000,000 views mark though, is the community that has been built. More than 12,000 comments have been made on the home page of Floxie Hope, and almost 19,000 have been made on the site as a whole. In these comments you will find people asking for advice, and others responding with support and guidance. You will find people sharing their hopes, fears, remedies, insights, and warnings in the comments throughout this site. Knowledge has been built and gained through the community of people commenting on Floxie Hope. People have selflessly offered their time, expertise, guidance, advice, support, and LOVE to other “floxies.” This offering of love and support for other people, whom each commenter hasn’t met in person, is really beautiful, and I appreciate everyone who has commented and formed the community that is Floxie Hope.

I also appreciate everyone who has contributed their story to Floxie Hope! The stories of hope and healing are so valuable, and so helpful! Thank you to everyone who has written a story about their journey through fluoroquinolone toxicity, and recovery!

I recently received this lovely message from Josh:

“Thank you so much for all you have done and continue to do on behalf of us floxies worldwide. Your guidance, insight and determined spirit helped me through so many dark days at the height of my illness. Where there was no good advice or hope, you provided the light of both. It’s been nearly 3 years since I suffered my reaction, and even though I didn’t think I’d ever get better…here I am, happy and healthy. Thanks again, you’re a rockstar and help people more than you understand.”

I cried. That’s why this site is here. That’s why thousands of people have viewed this site, and hundreds have joined the Floxie Hope community – because hope is powerful.

Our stories are moving, and our truth is powerful. What happened to us matters and the louder we scream our stories – our truth – the more we will change the system. Progress has been made, but we still have a lot to do. There are still too many people getting hurt by fluoroquinolones, but hopefully that will change someday soon. Until the day comes when the madness of people being hurt by fluoroquinolones stops, we can stay here and offer help, hope, and community to those who need it.

Thank you to all who have made Floxie Hope. It’s all of us, together, making a difference.

 

flu tox get help you need banner click lisa

Prescription for Disaster – 22 years later

Bitter Pills Fluoroquinolone Toxicity Book

In Stephen Fried’s 1994 Washington Post article, Prescription for Disaster, Fried describes his wife Diane’s terrifying reaction to Floxin (ofloxacin), a fluoroquinolone antibiotic. It’s a wonderful, award-winning article on which Fried’s follow-up book, Bitter Pills: Inside the Hazardous World of Legal Drugs, was based. I highly recommend that you read both the article and the book.

This quote from Prescription for Disaster summarizes both well:

“Before Diane’s frightening experience, I had always thought of prescription drugs as pretty much idiot-proof. Your doctor tells you to take them, so you do, assuming that the worst that can happen is they won’t work. It turns out the worst that can happen is that you drop dead. The next worst is that your body is permanently damaged. Less worse, but still not very good, is that you suffer for hours, days or weeks with something your doctor may or may not recognize as a drug reaction — from one drug or an interaction. It may or may not go away by itself.”

Though both Prescription for Disaster and Bitter Pills are about the hazards of prescription drugs generally, both have quite a bit of information about fluoroquinolone toxicity, and Diane’s personal story of a severe CNS adverse reaction to Floxin is discussed in-depth.

In Prescription for Disaster, Fried notes:

“I KEEP WANTING this story to end, but it never does. Late last year I got a call from a producer of Oprah Winfrey’s show. She wanted to do a program on adverse drug reactions because she had just had one — to Floxin. Diane and I appeared on the program, along with several other people we had met through the original article, and since then I’ve gotten a steady stream of calls. Many of them are from people who had almost the same reaction Diane did, but weren’t as lucky to have doctors who at least recognized a drug reaction and were willing to learn what they didn’t know about how to treat it. I’ve talked to people whose spouses have lost their careers in the aftermath of drug reactions, people whose fathers attempted suicide because of depression that seemed to have been triggered by quinolones.”

We all want this story to end. More than 22 years later (Prescription for Disaster was published in April, 1994), it is still going on. Thousands of people are hurt every year by fluoroquinolones. People are experiencing tendon ruptures that leave them in horrible pain, exhaustion that leaves them bed-bound, gastro-intestinal issues that leave them unable to eat, CNS issues that leave them unable to work, peripheral neuropathy that leaves them in permanent pain, and more. I sincerely hope that the story of people becoming chronically ill and disabled after taking Cipro, Levaquin, Avelox, Floxin, or their generic equivalents, ends soon. It’s not a good story, it would be nice if it ended sooner rather than later.

On the WONDERFUL site, http://fluoroquinolonethyroid.com/, the author notes the following about the publication of Prescription for Disaster in 1994:

For anyone who thinks that the FQ ADR’s are something new, think again. It’s an old, old story, this one, which actually goes back much farther than 1994. But this article highlights how Pharma, FDA, flox victims, the ignorant and dismissive medical profession, even publicity on shows like GMA, Dateline, Donahue, and even Oprah — they were all there —  it’s all happened before — way back in 1994. It’s all been completely ignored; and in fact, sales of FQ’s continued to increase and soar exponentially during the past 20 years. I, and who the hell knows how many others just like me, have been “floxed” since then. Had the FDA, Pharma, and the medical profession done their job back then, my life (and many others) might have been spared.

Don’t think Pharma or the FDA is just finding out about these ADR’s now. They’ve known. They’ve known for a very, very, long time. And they’ve done absolutely nothing about it.

So when you hear all the Pharma companies make their same old tired and outright spurious statements over and over again about how “Safety is our greatest concern, and these antibiotics have been prescribed safely for the last 20-30 years without problems,“ and the FDA says “We take these safety issues very seriously and are looking into it,“ you’ll know what bullshit that is. There is a historical record accumulating, and this article is just one example for you to post in rebuttal.    Remember:  the internet saves everything now. There will be less and less places for Pharma to hide as time goes on and the number of victims the world over continue to grow.

FQ’s are once again in the news. We can only hope that this time, it will be different.

Yes, we can hope that this time will be different. We need to stay vigilant though, and continually push, so that the pharmaceutical companies, the FDA, and even many doctors and nurses cannot get away with the lies of, “Fluoroquinolones have an excellent record of safety and efficacy,” and, “Side-effects are rare,” and, “There is no known mechanism for fluoroquinolones to cause multi-symptom, chronic disease,” and, “Multi-symptom, chronic diseases are in patient’s heads – they don’t really exist,” and, “Fluoroquinolones aren’t connected with autoimmune diseases, fibromyalgia, ME/CFS, POTS, arthritis, psychiatric illnesses, thyroid autoimmune diseases, etc.” Those lies have been told over and over again since fluoroquinolones first entered the market in the 1980s. Repetition doesn’t make them true, but it sure helps to reinforce the lie.

fluoroquinolone-lawsuit-banner-trulaw

There is plenty of evidence that fluoroquinolones are dangerous, destructive drugs that can lead to chronic illness and disability for many. There is also evidence that the mitochondrial destruction done by fluoroquinolones is similar to that of mitochondrial destruction found in people with autoimmune and other “mysterious” diseases. The evidence isn’t even new. They’ve known since 1994 that these drugs are damaging to the point of being disabling. They know, they just choose not to do anything meaningful about it. It is possible to put meaningful restrictions on dangerous drugs that ensure that they are only used when appropriate (in life-or-death situations) and that proper informed consent is given before the drugs are administered. Rather than making these meaningful changes though, the FDA and the pharmaceutical companies have chosen to largely ignore the problem.

Everyone who has gotten “floxed” since 1994 has been hurt because of willful ignorance on the part of the FDA. They claim, over and over again, that these reactions are new, and that they’re just now hearing about them. I realize that news sinks in slowly in a bureaucratic institution like the FDA, but 22 years is ridiculous and, frankly, unacceptable. They knew that these drugs were dangerous then, because people told them back then. They know that these drugs are dangerous now, because people have told them again. Research has also accumulated since 1994, and there are hundreds, if not thousands, of articles about the dangerous effects of fluoroquinolones published in journals (here’s a sampling of just a few – https://floxiehope.com/fluoroquinolones-links-resources/).

When is this going to stop? When will the FDA start doing it’s job and adequately regulating these dangerous drugs? How many more people have to get hurt by fluoroquinolones? How many more times do we have to scream at them and tell them what they already know – what they have known for more than 22 years – that fluoroquinolone adverse reactions are severe and devastating? It’s ridiculous. This mess should have been stopped 22 years ago. The FDA should have made meaningful changes to prescription guidelines for fluoroquinolones in the 1990s. If not then, they should have done so in 2008 when Public Citizen sued the FDA in order to get the black box warning about tendon ruptures added to the fluoroquinolone warning labels. Since meaningful reform didn’t happen then, how about now? The FDA just had a hearing about the risks of fluoroquinolones, and found that the risks outweigh the benefits in treatment for many common infections. They have the opportunity to enact meaningful change now, and they should do so.

I doubt that they will make meaningful, appropriate changes though. Business will go on as usual. People will continue to be hurt by fluoroquinolones. People who should know better (FDA personnel, Pharma scientists, doctors, etc.) will insist on saying that these adverse-reactions are rare, and thus insignificant and untrue. It’s a shame, because they are incorrect. These adverse reactions are severe, devastating, and not near as rare as they should be.

So… we have to keep screaming. We have to keep telling the news media about our reactions, writing to anyone who might listen, filing reports with the FDA, writing articles and blog posts, petitioning scientists, talking to friends, sharing articles, etc. We have to keep banging the drum until they listen.

I’m not sure how long this process will take. It’s been 22 years since Prescription for Disaster was published. I hope that it doesn’t take 22 more.

 

flu tox get help you need banner click lisa

 

Preventing Fluoroquinolone Toxicity

I was talking with my boyfriend about yesterday’s post, “Researching Cures for Fluoroquinolone Toxicity,” and he brought up a good point:

Yes, a cure would be nice, but fluoroquinolone toxicity is just so preventable – prevention seems like a better strategy. 

Yes, we (as a society) could pour tons of money, time, resources, etc. into finding a cure for fluoroquinolone toxicity, OR we could stop floxing people and prevent them from needing said cure in the first place.

As Benjamin Franklin wisely noted, “an ounce of prevention is worth a pound of cure.”

For those of us who have been hurt by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or Floxin/ofloxacin, a cure is very much needed and wanted. We know our poison, now where’s our antidote? It’s a reasonable and appropriate question for those who have been hurt, but I believe that prevention of damage will help more people than a cure.

Dear doctors, nurses, pharmacists, and everyone else in the medical system: STOP prescribing fluoroquinolones unless your patient is fighting a verified, life-threatening infection that is not responding to other drugs! 

People are suffering from disabling fluoroquinolone toxicity reactions after taking Cipro when there are other viable treatments and/or when antibiotics aren’t even needed.

People are regularly prescribed Cipro to treat travelers’ diarrhea and some of those people experience debilitating adverse reactions to it. Their reaction and their suffering are avoidable though, because travelers’ diarrhea is treatable with more benign methods – probiotics, hydration, and Pepto Bismol should do the trick. Most cases of fluoroquinolone toxicity due to taking Cipro, Levaquin, Avelox or Floxin for travelers’ diarrhea are completely PREVENTABLE!

Even the FDA has acknowledged that the risks of using fluoroquinolones outweigh the benefits when treating sinus infections, bronchitis, and uncomplicated UTIs:

“FDA is advising that the serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with acute sinusitis, acute bronchitis, and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.” (Source – straight from the FDA.)

Everyone who is suffering from fluoroquinolone toxicity after taking Cipro, Levaquin, Avelox, or Floxin as treatment for a sinus infection, bronchitis, or an uncomplicated urinary tract infection was hurt even though more benign antibiotics (or time, assuming that one’s immune system is functioning properly) could have been used.

Many cases of prostatitis aren’t bacterial, yet many men are given long courses of fluoroquinolone antibiotics to “treat” their prostatitis. In case it needs to be said, fluoroquinolone antibiotics are no better than placebos at treating non-bacterial prostatitis. Too many urologists are prescribing dangerous drugs (fluoroquinolones) that are no better than placebos, and hurting many men in the process.

fluoroquinolone-lawsuit-trulaw

Many people are prescribed Cipro, Levaquin, Avelox or Floxin to treat non-bacterial bladder pain. Interstitial Cystitis (IC) is a great imitator of bladder infections, and fluoroquinolones do NOTHING to treat IC pain–they may even make it worse.

All the pain and suffering that comes with fluoroquinolone toxicity, and there’s a lot of it, is SO PREVENTABLE for so many people! Remember: DO NO HARM! 

According to FDA figures, 26.9 MILLION prescriptions for fluoroquinolones were disbursed in 2011 alone (they haven’t updated their figures since 2011). Too many of those prescriptions were inappropriate. Many of them were for ailments that weren’t even bacterial infections.

“‘Antibiotic therapies are used for approximately 56 percent of inpatients in U.S. hospitals, but are found to be inappropriate in nearly half of these cases, and many of these failures are connected with inaccurate diagnoses,’ study author Dr. Greg Filice said in a news release from the Society for Healthcare Epidemiology of America.” (source)

Everyone in the medical system needs to recognize that adverse reactions to fluoroquinolones are disabling, often permanent, and that they look a lot like a multi-symptom, chronic illness. Unfortunately, at this time, there is no way to tell who will have an adverse reaction to a fluoroquinolone, so, as far as doctors should be concerned, EVERYONE is at risk. Fluoroquinolones are dangerous drugs, and their benefits do not outweigh their risks for many infections. They should ONLY be prescribed for treatment of verified, life-threatening infections that cannot be treated with more benign drugs.

If those basic rules were followed, there would be significantly fewer “floxies.”

Prevention is the answer to this problem.

A cure would be nice, but prevention is better.

The FDA acknowledges that fluoroquinolones have potentially permanent adverse effects, and that their risks outweigh their benefits for many patients/conditions. Now the FDA needs to put some policy changes behind this knowledge, and make sure that fluoroquinolones are not prescribed inappropriately.

Enacting policies that cut fluoroquinolone prescriptions by about 90% would be a good place to start.

Yes, there are cases when fluoroquinolones are the appropriate drugs to use – when a patient is facing death without the drugs. But a large portion of the prescriptions being written for Cipro, Levaquin, Avelox, and Floxin are completely inappropriate. A large portion of the pain, suffering, and destruction caused by fluoroquinolones is preventable.

The FDA is capable of enacting policies that prevent many cases of fluoroquinolone toxicity. They have the information, they have the power, they need to do what is right –

Stop unnecessary fluoroquinolone prescriptions! Prevent disabling fluoroquinolone toxicity!

There are safer drugs available in most cases.

 

flu tox get help you need banner click lisa

 

Researching Cures for Fluoroquinolone Toxicity

Several people have recently asked me if I know of anyone who is researching cures for fluoroquinolone toxicity. The short answer is, no, unfortunately, I don’t know of any individuals, institutions, or organizations that are working to find a cure for fluoroquinolone toxicity.

The longer answer is a bit more complex and nuanced.

In order to get doctors and scientists to do research into curing fluoroquinolone toxicity, fluoroquinolone toxicity first has to be recognized. In the five years that I have been involved with the “floxie” community, we have come a long way in getting fluoroquinolone toxicity recognized, and the 2016 announcement from the FDA that the fluoroquinolone warning labels are going to be changed to note that their risks outweigh their benefits for many common infections is a HUGE step in the right direction. The thousands of people who have shared their fluoroquinolone toxicity stories on social media, in the news media, and who have reported their reaction to the FDA, have all helped to get people to recognize that fluoroquinolone toxicity is real, and that it’s a multi-symptom, often chronic, sometimes disabling, syndrome. Recognition that the problem exists is a necessary first step, and we are definitely making progress in getting fluoroquinolone toxicity recognized.

After recognition of the problem, scientists and doctors must figure out the mechanism through which fluoroquinolones cause damage before they can start looking for a cure. This, unfortunately, is another big roadblock. There are more than 200 journal articles about the effects of fluoroquinolones on the Links & Resources page of this site. These journal articles note that fluoroquinolones damage mitochondrial DNA, downgrade GABA, deplete magnesium and iron, cause liver and kidney damage, increase oxidative stress, deplete antioxidants, disrupt the endocrine system, activate mast cells, and more. (These possibilities are discussed in more depth in the post, What is Fluoroquinolone Toxicity?) There are so many ways in which fluoroquinolones cause damage, that it is difficult to determine where to start looking for a solution. The hypothesis–fluoroquinolones damage EVERYTHING–isn’t particularly testable or useful, even if it is true. Perhaps though, a cure that focuses on one of the systems that fluoroquinolones damage can help some (maybe most) people through fluoroquinolone toxicity.

There are people and organizations that are focusing on finding cures for some aspect of fluoroquinolone toxicity. For example, there are many companies that are trying to improve mitochondrial function through supplements and diets. MitoQ, K-PAX, Bulletproof, and many other supplement companies have mitochondrial support products, and doctor Terry Wahls notes the importance of mitochondrial health in The Wahls Protocol. People who are searching for a cure for ME/CFS, fibromyalgia, autoimmune diseases, autism, neurodegenerative diseases, and congenital mitochondrial diseases are focusing on mitochondria, and their findings may help floxies too. Additionally, supplements, diets, exercises, and other methods that support vagus nerve function may help floxies as well as the people who are suffering from POTS, autoimmune diseases, mast cell activation, histamine intolerance, and other forms of autonomic nervous system dysfunction. People who are going through benzodiazepine withdrawal know a lot about downgraded GABA neurotransmitters, and perhaps the information that they have can help floxies to deal with the GABA aspects of fluoroquinolone toxicity. Also, things that help people to deal with diabetes-induced peripheral neuropathy may also help people with fluoroquinolone-induced peripheral neuropathy. The makers of these supplements, diets, etc. aren’t focusing on fluoroquinolone toxicity, but in focusing on other diseases that are similar to fluoroquinolone toxicity, they may stumble on answers for floxies as well. I suspect that a cure for fluoroquinolone toxicity will come through people looking for cures for other, more widely recognized and accepted, diseases. It would be nice if concerted effort was given to fluoroquinolone toxicity specifically, but if a cure comes via research into another disease, that’s fine too.

TOL19-001/Cicatendon for Tendon Repair

The only study I’ve seen that focused on repairing damage done by fluoroquinolones is TOL19-001 reduces inflammation and MMP expression in monolayer cultures of tendon cells. It’s an interesting study that I highly recommend to all my floxed friends. Yes, it is a study that is related to the company that produces the supplement studied, so it’s not without bias, but it’s interesting and relevant none-the-less. The article focuses on fluoroquinolone-induced tendon destruction, which is one of the most well-documented effects of fluoroquinolones. It goes over a mechanism through which fluoroquinolones cause tendon destruction–

“This family of drugs (fluoroquinolones) is, indeed, known to induce tendon lesions in vivo [33, 34, 35, 36, 37, 38, 39, 40] by causing matrix disruption, inflammation, and degenerative changes of tenocytes [37, 41]. In this study, we showed that CIP (ciprofloxacin) affects tendon cells, including inhibition of cell proliferation (data not shown), increased expression of p65 NFkB subunits and MMPs (at least at mRNA level).”

It also is noted that:

“Here, we propose that the association of spirulina, glucosamine sulfate, ginseng, selenium, sillicium, iron, vitamin E and zinc (TOL19-001, marketed as Cicatendon®, LABRHA Laboratory, Lyon, France) may have a beneficial effect on tendon healing and repair.”

The article goes over a lot of technical information about MMPs and how the TOL19-001/Cicatendon and its ingredients may help to repair fluoroquinolone-damaged tendons, and, again, I recommend that you all read it.

I have only heard from one friend who has tried the TOL19-001/Cicatendon, and she reported that it helped (but I wouldn’t say “cured”) her. I have not personally tried TOL19-001/Cicatendon, but I have tried many of its ingredients as individual supplements, and many of them helped me through fluoroquinolone toxicity.

TOL19-001/Cicatendon certainly seems promising for tendon repair, even if it doesn’t address the other issues having to do with fluoroquinolone toxicity. I don’t think that we can call it a “cure” but perhaps it is progress. At the very least, it is a study that looked at repairing the damage caused by fluoroquinolones, and I would certainly call THAT progress.

I hope that more supplement companies take a look at fluoroquinolones, and research how their products may help to repair some of the damage done by fluoroquinolones. Though independent research from academics is perceived more positively than research sponsored by supplement companies, I think that supplement companies are more likely to be willing and able to invest in fluoroquinolone toxicity studies than universities currently are, and I’m grateful to any individual or institution that is looking for a cure for this horrible toxicity syndrome.

One more thing…

Not to toot my own horn, but floxiehope.com focuses on healing, and finding a cure, for fluoroquinolone toxicity. The recovery stories don’t contain any “magic bullets,” but they do contain methods for recovery that many people have used. I think that the information in the recovery stories is valuable and useful. Though there isn’t a “cure” at this time, there is recovery, and I think that realizing that is a big step in the right direction.

Also, The Quinolone Vigilance Foundation (QVF) is working with scientists to research fluoroquinolone toxicity, and a cure may come from that. Their work is greatly appreciated!

And, The Fluoroquinolone Toxicity Solution, is a good guide that has helped many people.

We all wish that we had a magic bullet cure. Maybe one day. For right now, we can use what we have, and hope for more research to come.

flu tox get help you need banner click lisa

 

FQ Toxicity Featured in The Anxiety Summit

The following post was originally sent out in an email. If you would like to sign up for the Floxie Hope email list, you can do so through THIS LINK. You also get a free copy of the ebook Hacking Fluoroquinolones when you sign up for the email list. 🙂

AnxietySummit4_small_group2016_v3

Fluoroquinolone-Induced Anxiety

Dear Friends,

As many of you know, fluoroquinolones can induce awful anxiety. There is information about fluoroquinolone-induced anxiety in the following posts:

Fluoroquinolone-induced anxiety can be so horrible, that it can have truly tragic consequences, as described in PSYCHIATRIC ADVERSE REACTIONS TO PHARMACEUTICALS IGNORED. Shea McCarthy lost his life because of his serious and severe psychiatric reaction to Levaquin. It’s horrible, and my heart aches for all of his loved ones.

Anxiety Help and Information

I had the pleasure and honor of being interviewed by my colleague and friend, Food Mood Expert Trudy Scott for “The Anxiety Summit.”  Trudy is the author of The Antianxiety Food Solution: How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood and End Cravings and is on a mission to share the amazing healing powers of food and nutrients for anxiety and mood issues.

Between June 6 and June 16, 2016, she will be interviewing world-class experts and opinion leaders on the topic of anxiety and food.

Here are just a few of the amazing speakers and topics:
– “Anxiety: The Stressed and Toxic Gut” – Dr. Josh Axe, DNM, DC, CNS, author of Eat Dirt
– “Multiple sclerosis and anxiety: The Wahls Protocol” – Dr. Terry Wahls, MD, author of The Wahls Protocol
– “Anxiety and digestion: the microbiome, stomach acid, bile and the vagus nerve” – Prof. Liz Lipski, PhD, CCN, CNS, author of Digestive Wellness
– “Marijuana and anxiety: Panacea or Pandora’s Box?” – Dr. Hyla Cass, M.D., board-certified in psychiatry and integrative medicine, author of The Addicted Brain and How to Break Free
– “Anxiety and heavy metals: chelation of mercury and lead” – John Dempster, ND, host of the Mental Wellness Summit
– “Nutrients that Fuel Brain Power and Reduce Anxiety” – Dr. Drew Ramsey, M.D., psychiatrist, farmer, author of Eat Complete

— “Antibiotic Induced Anxiety – How Fluoroquinolone Antibiotics Induce Psychiatric Illness Symptoms” –Lisa Bloomquist of http://www.floxiehope.com

Check out the complete speaker lineup here: THE ANXIETY SUMMIT

You’ll hear the science and learn practical transformational tools you can apply right away.

Once you sign up (at no cost to you!), you will also receive a link to the page where you can download amazing gifts from many of the speakers, and get access to questionnaires and research as they become available.

Here are just a few of the gifts (and more are being added each day):

Top of the World – a custom song co-created by Trudy Scott and Amma Jo
The King’s Medicine Cabinet eBook: A complete guide on essential oils and their history, uses, cures, and recipes that will transform your health forever! By Dr. Josh Axe, author of Eat Dirt
The Leptin Blueprint by Mike Mutzel, author of The Belly Fat Effect
Hacking Fluoroquinolones by Lisa Bloomquist, patient advocate, creator of Floxie Hope
SCD Quick Start Guide by Steve Wright, creator of SCDlifestyle
10 Ways to Balance Serotonin Naturally by Dr. Peter Bongiorno, author of Put Anxiety Behind You
Food for Thought – an audio presentation by Dr. Terry Wahls, MD, author of The Wahls Protocol

You will also have the option to purchase the MP3s and/or transcripts (digital or CD version) of all the interviews if you’d like to keep them for your learning library.
I hope you’ll join the summit!

 

THE ANXIETY SUMMIT is FREE from June 6 – 16, 2016.

 

Thanks to all who join!

 

The Anxiety Summit – Antibiotic Induced Anxiety – How Fluoroquinolone Antibiotics Induce Psychiatric Illness Symptoms

Anxiety Summit Banner

Dear Colleague Letters: Information about Fluoroquinolone Toxicity from Doctors to Doctors

Several doctors have written “Dear Doctor/Colleague” letters regarding the horrible, damaging effects of fluoroquinolones. I appreciate all of these doctors who are speaking out about the dangers of fluoroquinolones, and I encourage you to read, print, and share each of these letters:

Additionally, the following “Dear Colleague” letter from Lawrence W. Rodgers, Jr. MD was recently brought to my attention. Dr. Rodgers’ wife has suffered from the adverse-effects of fluoroquinolones, and he wrote this thoughtful letter to his colleagues about her experience and the experiences of some of his patients.

Dear Colleague:

I am writing this letter to describe my journey as a physician in understanding the potential devastating and life altering side effects of Fluoroquinolones on patients. I am a practicing ENT physician in Florida. My training included Medical School at the University of Florida where I was Alpha Omega Alpha and graduated 10th in my class. Residency training as an Ear, Nose, Throat and Head and Neck surgeon was completed at the University of Florida.

During my career as a physician in private practice I have prescribed oral Levaquin, Avelox and Cipro for over 20 years. Usually this was given for chronic sinusitis.

My wife was given oral Levaquin twice, Avelox once and then Factive over a four year period of time. Her first Levaquin precipitated peripheral neuropathy in August 2008. She had persistent and then worsening symptoms since that first injury seven years ago. In retrospect she suffered acute onset connective tissue symptomatology, severe neurocognitive injury, marked prolonged fatigue and peripheral neuropathy related to taking these antibiotics. The onset of these side effects varied from acute, within a few days of beginning the drug to later onset. To this day she suffers ongoing peripheral neuropathy, neurocognitive difficulty and persistent fatigue with joint and back pain, also visual change and thyroid dysfunction. Her life has been permanently altered. I consider myself a good physician but I was unable to recognize these injuries as arising from the Fluoroquinolones because I was not looking for these drugs as the culprit. The differential diagnosis was complicated. Now I realize these medications as the direct cause and effect.

As I realized the potential side effects of Fluoroquinolones I began looking for this in my patients. In my experience over the last two to three years three patients come to mind. One who experienced acute significant vertigo lasting almost three months from the use of oral Levaquin. A second patient with acute onset severe debilitating lower extremity pain from oral Levaquin caused him to be unable to work as a truck driver for two months. A third patient is a 23 year old girl given oral Levaquin by her primary care physician for sinusitis. She immediately experienced severe ankle and foot pain within a few days of taking oral Levaquin. This patient worked as a horse trainer and rode horses daily. She quickly became unable to do her job because of severe ankle pain as she tried to place her feet in the stirrups as she rode. The patient was referred to me because of persistent sinusitis. This was cleared with the use of other antibiotics. My young patient had persistent ongoing debilitating ankle and lower extremity pain and was unable to continue in the work she enjoyed. This was noted at her last visit with me to be persistent six months after discontinuing the Levaquin. More details concerning these patients are available if you would like to discuss them with me.

This is anecdotal but caused me to review other information and studies of the potential side effects of Fluoroquinolones. In my experience I conclude these are dangerous and potentially life altering medications and should only be used in life threatening situations. The most important adage I learned as a young medical student was “First do no harm”, a very valuable basic principle for any physician. It is my belief and experience that the over prescribing of these antibiotics violates this basic principle of medicine. I no longer prescribe Fluoroquinolones to my patients. I will be happy to discuss my experience at any time.

Sincerely,
Lawrence W. Rodgers, Jr. MD
Otolaryngology

I am grateful for all of the doctors who have taken the time to speak out to their colleagues about the dangers of fluoroquinolones! As more doctors realize the dangers of these drugs, more will follow in the footsteps of doctors like Dr. Rodgers who no longer prescribes fluoroquinolones to his patients.

 

flu tox get help you need banner click lisa

FDA Advises Restricting Fluoroquinolone Use

May 12 flox victory

On May 12, 2016 the FDA released the announcement, Fluoroquinolone Antibacterial Drugs: Drug Safety Communication – FDA Advises Restricting Use for Certain Uncomplicated Infections. It stated:

FDA is advising that the serious side effects associated with fluoroquinolone antibacterial drugs generally outweigh the benefits for patients with sinusitis, bronchitis, and uncomplicated urinary tract infections who have other treatment options. For patients with these conditions, fluoroquinolones should be reserved for those who do not have alternative treatment options.

An FDA safety review has shown that fluoroquinolones when used systemically (i.e. tablets, capsules, and injectable) are associated with disabling and potentially permanent serious side effects that can occur together. These side effects can involve the tendons, muscles, joints, nerves, and central nervous system.

As a result, FDA is requiring the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs to be updated to reflect this new safety information. FDA is continuing to investigate safety issues with fluoroquinolones and will update the public with additional information if it becomes available.

This is huge, wonderful news for the “floxie” community!

The middle paragraph of the FDA announcement is particularly gratifying. The FDA is acknowledging that fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin) are associated with “disabling and potentially permanent serious side effects that can occur together.” They are acknowledging that fluoroquinolones can lead to multi-symptom chronic illness, and that’s HUGE! Fluoroquinolones don’t only cause one or two of the side-effects listed on the warning label in isolation, they cause a syndrome of illness. For the FDA to acknowledge this is an enormous step in the right direction. (More on the FDA’s acknowledgement of Fluoroquinolone Associated Disability, FQAD, can be found in the post, “An Official Name: Fluoroquinolone-Associated Disability (FQAD).”)

This acknowledgment from the FDA grew out of thousands of people reporting their symptoms to the FDA, speaking out to the media, and testifying before the FDA.

The change in fluoroquinolone warning labels stemmed from the November 5, 2015 meeting of the FDA’s Antimicrobial Drugs Advisory Committee meeting to discuss, “the risks and benefits of the systemic fluoroquinolone antibacterial drugs for the treatment of acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis in patients who have chronic obstructive pulmonary disease, and uncomplicated urinary tract infections in the context of available safety information and the treatment effect of antibacterial drugs in these clinical conditions.” Hundreds of victims of fluoroquinolones, as well as doctors, attorneys, journalists, and other supporters, attended the Antimicrobial Drugs Advisory Committee meeting, where 30+ people were able to tell their story of how fluoroquinolones had devastated them and their loved ones–causing multi-symptom, chronic illness that resulted in disability and even death for many. The transcript from the meeting can be found HERE. The committee listened, and ruled that the current warning labels on fluoroquinolones were not sufficient, and that fluoroquinolones are not appropriate for use in treating minor infections.

fluoroquinolone-lawsuit-banner-trulaw

Because the FDA has a history of not doing as their committees request, and because action can take years, those in the fluoroquinolone injured community weren’t sure whether or not the victorious ruling at the committee level would translate into changes to the actual warning labels. However, on May 12, 2016 the FDA made the announcement that the warning labels for fluoroquinolones would change to note that the risks of fluoroquinolones outweigh their benefits in the treatment of patients with sinusitis, bronchitis, and uncomplicated urinary tract infections who have other treatment options. The announcement, and the ensuing warning label changes, mark a moment of victory and vindication for victims of fluoroquinolones

Though many people don’t think that changing the warning labels is enough (and they have very good, legitimate reasons for thinking that warning label changes are inadequate), it is a step in the right direction. With warning label changes, perhaps doctors will acknowledge fluoroquinolone toxicity and restrict their use of fluoroquinolones. Additionally, warning label changes open doors for lawsuits, and lawsuits have the power to hurt the pharmaceutical companies and help victims of fluoroquinolones to gain justice. If the warning label changes include language like, “An FDA safety review has shown that fluoroquinolones when used systemically (i.e. tablets, capsules, and injectable) are associated with disabling and potentially permanent serious side effects that can occur together. These side effects can involve the tendons, muscles, joints, nerves, and central nervous system.” the door will be open for many floxies with many symptoms to sue Bayer and Johnson & Johnson, the makers of Cipro, Levaquin and Avelox. Lawsuits, if successful, may bring about change in the distribution of fluoroquinolones, and may also help victims of fluoroquinolones to gain justice and possibly even healing.

The FDA announcement has also led to media coverage, and with media coverage comes additional awareness. The word is spreading far and wide as to how dangerous these drugs are.

The FDA announcement is a massive step in the right direction, and May 12, 2016 is a very good, victorious, vindicating day for victims of fluoroquinolones. It is a day to celebrate!

Cheers, my friends!

 

flu tox get help you need banner click lisa

Comments From Doctors About Fluoroquinolone Toxicity

With every article about fluoroquinolone toxicity that is published (there are hundreds HERE), more and more people come forward and say, “that happened to me too,” or, “those drugs hurt my family member,” or some variation/elaboration of those sentiments. As awareness grows, more and more doctors are coming forward to say that fluoroquinolones are dangerous drugs whose risks are under-recognized. Growing awareness and recognition, especially from doctors, nurses, and other medical professionals, is important in the fight to reduce the number of lives ruined by these dangerous drugs.

It recently came to my attention that there were many good comments from doctors and other medical professionals on an article in Medscape Medical News, “FDA Panel Says Fluoroquinolones Need Stronger Warnings.” (If the link leads you to a sign-in form instead of the article, just google “FDA Panel Says Fluoroquinolones Need Stronger Warnings” to skip the sign-in-wall.) It should be noted that Medscape Medical News is aimed at medical professionals, and that one needs to work in medicine in order to comment on stories on the site. The comments are, for the most part, a conversation between doctors. It is heartening to see that most of the comments are supportive of the notion that stronger warnings are needed on fluoroquinolones, and that the real risks of Cipro/ciprofloxacin, Levaquin/levofloxacin, Floxin/ofloxacin and Avelox/moxifloxacin are under-recognized and under-appreciated. Several of the commenting doctors also noted that these drugs should only be used as a last-resort, after all other options had been exhausted.

In this post, I’m going to highlight some of the comments that were published on “FDA Panel Says Fluoroquinolones Need Stronger Warnings.” It’s good for “floxies” to hear from doctors who recognize the pain caused by fluoroquinolones, who are also fighting for more prudent and appropriate use of these dangerous drugs. It’s nice to hear from doctors who recognize that fluoroquinolones can cause a multi-symptom chronic illness, and that fluoroquinolone toxicity is not a simple “side-effect.” A huge “THANK YOU” to all the doctors who left supportive comments on the article! Conversations between doctors about the dangers of fluoroquinolones are going to do a lot to change how fluoroquinolones are thought of and prescribed.

Here are just a few of the comments (I ended up copying/pasting most of them, but there are still some gems left behind in the comments section of the article):

“At the age of 39, I suffered horribly from the use of Cipro. It changed my ability to practice Anesthesiology. I had to go to barely part time work when this occurred and could barely move. I had no preexisting health issues prior to the use of this fluoride containing poison in my opinion. I still have evidence of its destruction 6 years later. I have met several other individuals who have also suffered among them a classical pianist, two other physicians and several other highly educated individuals whose lives were changed monumentally especially for the first one to two years post “poisoning” as I call it.

The toxicity of this class of drugs is predominantly musculoskeletal and neurologic and I can truly sympathesize with patients who have been “blown off”as hypochondriacs by their PCP s or others when they present with severe musculoskeletal pain and neuro and neuropsych issues. There are other SE as well in various organ systems however as noted most seems centered in the MS and neuro psych realm. Many have expansive work ups (as did I) to rule out ominous diagnoses all to no avail but suffer greatly nonetheless in terms of years not weeks or months!

Fluoroquinones are cytotoxic to chondrocytes and the vasa vasorum is also thought to be greatly affected at the microscopic level and may lead to the neuropathy. Some feel this propensity in patients to suffer what is called (By victims of these drugs)”FQ syndrome”may point to a mitochondrial source.

Just because there is no blood test to measure the damage these poisons wreak on previously well patients or because the wide range of symptoms patients experience has yet to be acknowledged and named a formal syndrome, doesn’t mean the horrible side effects aren’t real or don’t exist. To do so, is folly. I was finally diagnosed at a well known academic center by a neurologist in conjunction with rheumatologist. Also of interest is the flood of multiple significant musculoskeletal and neurologic complaints suffered by a large proportion of government workers who were given Cipro after the Anthrax scare several years ago. However, again, many people were dismissed then.

One thing is certain is that significant side effects of these medications exists and failure to acknowledge patients who present with what seems to be a “positive review of systems” after FQ use should be taken seriously. Especially true when as a physician you know your patient was previously healthy prior to FQ use and not a patient who routinely presents with multiple mundane complaints.

I feel and have read many patients who experienced nearly identical symptoms to the ones I suffered. Most all blown off as head cases. If more physicians would entertain the possibility a FQ may be responsible for their patients suffering, maybe then they would

Report to the FDA and we would have a true idea as to the incidence of life changing and sometimes permanent havoc these drugs wreak on our patients. In my case, I’ve lived it and I welcome the added safety warnings on these drugs. People have abused these drugs which are extremely broad spectrum and powerful for conditions that don’t require a hammer to kill an ant. Hoping these warnings will ease the indiscriminate use of these very potentially damaging drugs.”

“This does not even mention the risk of acute toxic psychosis. I have witnessed it in a 17 year-old on levofloxacin for h. pylori. Dramatic, acute onset of psychosis after two doses with no prodromal history. There are more cases out there I understand. I have learned to reserve these drugs for cultured bacteria for which there is no other reasonable alternative. It is not a reasonable choice for prophylaxis or starting treatment pending culture results in my opinion.”

“I, myself, have had major issues with this class of drugs.  Took Avelox in July 2013 for an upper respiratory infection without issue.  Was given Avelox again in November of 2013 and within 10 minutes of my first pill, I was in anaphylactic shock.  I was transported to the ER and nearly died!  Over previous years, I was given Levaquin and Cipro for other URI s.  Guess my body had enough.  My joints are shot and I will never be the same again.”

“I agree with need for stronger language even a black box warning and better education of prescribers.”

“I am a nurse, and i never knew about this until i took Levoquin and Cipro. Now i am a disabled person. I lost my life. The side effects are not being reported. Check the study UCSD (University of California, San Diego) is doing. Thanks for reading our notes and joining in.”

fluoroquinolone-lawsuit-banner-trulaw

“I am a BSN, RNC-NIC nurse.  I had been given Levoquin and Cipro both at different times.  I am now a “FQAD” person otherwise know as a “Floxie”.

The medication was given appropriately both times as second and third choice for sinusitis and possible bacteria meningitis (it ended up being viral).  I am prone to meningitis and needed to be treated. After two other abx didn’t work, i had to go on a Fluoroquinolone.  My life was saved.  However, it is also ruined.  I was walking up a short flight of stairs, slowly, nothing special, and my Gluteus minimums and my Gluteus medius tore almost completely off my femur.  I was allowed to do nothing and no physical therapy allowed for 7 months.  pain, when not on analgesics was 10/10.  ON FIRE!!  Finally off to the Physical Terrorist and she seemed to somehow cure me.  It is coming back through.

I have concentration difficulties, issues with eyes, i fall asleep sitting up at the dinner table, i cannot remember words, faces, people i know well, EEG shows something as does MRI and have to go through Neurophsych testing, pain head to toe, dx with Fibromyalgia too.  I have never, ever in my life been depressed (unless called for in the case of a loved one dying etc).  I now have depression and am slightly suicidal.  (NEVER EVER that way previously, this is from the Fluoroquinolone.)  I have a chronic fatigue type of issue. I could go on – so many problems.  I have to go have my heart checked now i have issues there  – not sure what.

Please, do a culture.  Insist on a culture.  There may be another drug. I lived, but my life is ruined.  I loved being a nurse.  I cannot even garden now and had to hire a housekeeper.

This is serious!  These Fluoroquinolones are poison.  I don’t really do anything anymore.  i am afraid of running into people who know me and i should know but do not.  That is embarrassing.  I have taken to telling them i am sorry, i have fluoroquinolone toxicity and it has affected my brain.  Will you tell me how i know  you?  Embarrassing as hell, but so far so good, everyone has been nice about it.  When i run into someone who is not, i will probably end up back in my house.

In retrospect, i would rather have risked not taking it and not living.  Yes, it is that bad.

Do not poison your patients.  Tell the docs, they do not know.  Look us up on Facebook by typing in “Fluoroquinolone” in the search bar.  Meet us and see what our lives are like.   One Cipro tablet, one Levoquin can cause this.”

“had reaction to fluoroquinolone but question how many reactions are actually reported to FDA. I know mine wasn’t. Suspect rate of side effects is way higher than reported. also suspect the generic I had releases at a different rate of delivery than the older brand name Levaquin possibly causing reaction as I never had it with brand name in past.”

“After one dose of ciprofloxacin, I developed Achilles tendinitis, first on the right, later on the left. These impaired my mobility for more than one year.”

“Quite a few postal workers presented with today those of us in the “know” call FQ syndrome after prophylaxis for anthrax scare!

There’s a lot out there! Physicians have failed these patients by and large by not reporting these side effects and hence nothing has been done with veracity till now as more and more patients are getting vocal and advocating and demanding answers. The Internet has allowed many suffering to see they are not “crazy” and others are suffering too!”

“Excellent article ,discussing a very important subject.FLUOROQUINOLONES are terrible drugs ! no one can imagine how harmful are they till he suffers one side effect and i refer to the SENSORY NEUROPATHY involing the whole body from face to feet including chest and abdomen.”

“Fluoroquinolones ought to be the absolute last antibiotic of choice in every case. Its’ highly unfavorable safety profile would make me think long and hard before using it.”

“Some doctors still hand these things out like aspirin. I knew they were dangerous, but not this much. This announcement needs very effective publicity – especially to physicians and pharmacists.”

“don’t forget the neurotoxicity ( potential that is ) is not limited to the periphery and that patients with epilepsy should probably be spared the ”quinolone risk” unless options are limited and the treated condition dangerous.”

“FQ’s were brought on the scene with a lot of hype. IMO they have not lived up to the hype that preceded its use. Whatever happened to using Tetracycline for sinusitis, Bactrim for UTI’s. Of course you could go outside the box and use colloidal silver for any and all infections without worry of resistance.”

“I am amazed at how often the quinolones are prescribed when there are safer alternatives. They should not be a first choice!”

“I suffered horribly from Cipro and relate to the fact that MOST physicians have no idea of the wide swath of side effects these drugs are responsible for and unfortunately some of them are so severe they leave the victim with permanent sequelae. So many patients “blown off” by their physicians who either fail or refuse to acknowledge the poison these drugs are. It kills Anthrax.”

“I don’t know why any physician would risk prescribing fluoroquinolones. Tequin almost killed me and I’m not exaggerating. I spent several days close to death in the hospital. Thankfully I’m alive but my hearing and eyesight and blood vessels are permanently damaged and I STILL have other autoimmune, neuropathy and soft tissue issues as well ( since 2003). I spent several days in and out of a ‘ diabetic’ coma and the doctors were no help. No one would listen to me when I told them it was the Tequin that was killing me. Given my sed rate, I was given a Lupus diagnosis. That was the final straw for me and I knew I would die if I didn’t get out of there. When I was coherent long enough to speak to my husband, I told him to unplug me, give me some soda and crackers so that I could gain enough strength to walk out of the hospital. I went home proceeded to do my own research and find the help I needed from friends/colleagues. I was in so much pain all over my body and had to sleep on a hard floor ( with my dogs 😀 ) for two months because the bed was too soft and the slightest strenuous movement was too painful. It took a good year before I was completely pain-free and the tinnitus became tolerable. G-d help anyone in a similar situation that doesn’t have the same level of education to help themselves. These meds should be banned!!!!!!!!!!”

“With the possible exception of darifenacin (Enablex), anticholinergics (antimuscarinics) used in treatment of overactive bladder also increase the risk of QT prolongation and torsade de pointes. Perhaps we should show particular caution in prescribing fluoroquinolones for patients using longterm anticholinergic medications.”

“Maybe physicians should consider side effects more and potential for developing resistance. Cheaper first generation drugs can still be used effectively without going to the big guns for minor infections.Patients don’t always understand potential consequences. Physicians should.”

“It has been more than ten years ago now when the medical director of one of the hospitals I was on staff at told me that flourquinolones was appropriate first-line therapy for a UTI. I vehemently arqued with him to no avail. There was no changing his mind.

Tell me, did he sell out or was the drug manufacturer’s campaign so high powered to convince everyone, except me, that this was appropriate care?”

“Nice article. Warning may also include their effect on sleep, causing insomnia.”

“My father got severe drug reaction with ciprofloxacin in the form of bone marrow failure. I have also been reported cases of bone marrow suppression and skin rashes with ciprofloxacin. It needs further careful observation.”

 

 

flu tox get help you need banner click lisa

NSAIDs and FQs Damage Mitochondria, Increase Oxidative Stress, and Cause Cell Death

As I noted in the post, Why NSAIDs Suck for Floxies (and Probably Everyone Else Too), NSAIDs often exacerbate fluoroquinolone toxicity symptoms, and there are several mechanisms through which NSAIDs can interact with fluoroquinolones. The results of a recent article published in the Journal of Molecular and Cellular Cardiology by researchers at UC Davis, Different effects of the nonsteroidal anti-inflammatory drugs meclofenamate sodium and naproxen sodium on proteasome activity in cardiac cells, help to further explain why NSAIDs trigger fluoroquinolone toxicity symptoms, and why they are a horrible combination.

NSAIDs and Fluoroquinolones Damage Mitochondria

The study showed that NSAIDs “Attack mitochondria, reducing the cardiac cell’s ability to produce energy” (source).

Likewise, fluoroquinolones have been shown to attack mitochondria. The studies, Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells and Delayed cytotoxicity and cleavage of mitochondrial DNA in ciprofloxacin-treated mammalian cells show that fluoroquinolones damage mitochondria, deplete mitochondrial DNA, and cause oxidative stress.  Also, the FDA admits that mitochondrial damage is the likely mechanism through which fluoroquinolones cause peripheral neuropathy.

Healthy mitochondria are vital for cellular energy and health. Unhealthy mitochondria have been linked to many diseases, including M.S., fibromyalgia, M.E./C.F.S., P.O.T.S., diabetes, cancer, aging, and more. Do NSAIDs and fluoroquinolones increase one’s chances of getting those diseases that are related to mitochondrial dysfunction? It’s certainly reasonable to think so – via the mitochondrial damage link – but studies have not shown a direct connection (mainly because neither have been researched).

NSAIDs and Fluoroquinolones Increase Reactive Oxygen Species (ROS)

NSAIDs also “Cause the production of reactive oxygen species, which stresses heart cells and is associated with many diseases, including heart disease” (source).

Fluoroquinolones have also been shown to increase production of reactive oxygen species (ROS – aka oxidative stress). The article, Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients notes that, “Several in vitro and in vivo study using animals revealed that fluoroquinolones induced oxidative stress by producing reactive oxygen species (ROS)” and that in vivo human studies show that, “ciprofloxacin and levofloxacin induce more reactive oxygen species that lead to cell damage than gatifloxacin.

ROS are described as follows:

Without oxygen, we could not exist. However, in the process of generating energy by “burning” nutrients with oxygen, certain “rogue” oxygen molecules are created as inevitable byproducts. Known as free radicals and reactive oxygen species, these unstable, highly reactive molecules play a role in cell signaling and other beneficial processes when they exist in benign concentrations.  But when their numbers climb, as may occur as a result of aging and other conditions, they may wreak havoc with other molecules with which they come into contact, such as DNA, proteins, and lipids. As such, these “pro-oxidant” molecules become especially toxic.

In fact, a prevailing theory of disease and aging states that the gradual accumulation of pro-oxidant molecules, and the harm they incur, is responsible for many of the adverse changes that eventually cause various diseases. These include cancer (possibly triggered by free radical-induced damage to cellular DNA) and inflammatory and degenerative diseases such as Alzheimer’s, arthritis, atherosclerosis, and diabetes. While scientists have not yet reached consensus on the topic, accumulated evidence overwhelmingly identifies increased oxidative stress with age as a source of damage to cellular structure and function. (source)

To drastically over-simplify things, ROS are the opposite of antioxidants. If you’ve ever read about the benefits of antioxidants like vitamin C or glutathione, ROS have the opposite effects. In excess, ROS are harmful and damaging to cells.

NSAIDs and Fluoroquinolones Cause Cell Death

NSAIDs were found to “Impair the cardiac cell’s proteasome, the mechanism for degrading harmful proteins. This leads to toxic buildup and eventually to the death of cardiac cells” (source).

fluoroquinolone-lawsuit-banner-trulaw

Fluoroquinolones have also been found to cause cell death (apoptosis). This has been shown in many articles that note that fluoroquinolones are useful as chemotherapeutic agents specifically because they kill cells. Unfortunately, they don’t just kill cancer cells, they also kill healthy cells. The following articles note that fluoroquinolones are chemotherapeutic drugs that damage and kill cells:

  1. In an article published in the journal Urology, it was noted that, “Ciprofloxacin and ofloxacin exhibit significant time and dose-dependent cytotoxicity against transitional carcinoma cells.” That’s great – excellent, actually – if you happen to have carcinoma cells in your bladder. But if you just happen to have a bladder infection, chemo drugs that exhibit toxicity toward human cells – cancer or otherwise – are inappropriate for use (1).
  2. The mechanism for action for fluoroquinolones is that they are topoisomerase interrupters (2).Topoisomerases are enzymes that are necessary for DNA replication and reproduction. All of the other drugs that are topoisomerase interrupters are approved only for use as chemotherapeutic agents. It is only appropriate to use drugs that disrupt the process of DNA replication and reproduction when someone’s cells are already so messed up that they have cancer.
  3. Fluoroquinolones have been found to interfere with the DNA replication process for human mitochondria (3, 4, 5). Mitochondria are vital parts of our cells, (cellular energy is produced in our mitochondria), and disrupting the process through which mitochondrial DNA replicates causes cellular destruction, oxidative stress and disease.
  4. Fluoroquinolones have been shown to be genotoxic and to lead to chromosomal abnormalities in immune system cells (6).
  5. Fluoroquinolones disrupt cellular tubulin assembly (7). All of the other drugs that disrupt tubulin assembly are chemotherapeutic drugs.
  6. Fluoroquinolones disrupt enzymes, including CYP1A2 enzymes, which are necessary for detoxification.

Avoid NSAIDs and Fluoroquinolones

Dr. Aldrin V. Gomes, one of the authors of Different effects of the nonsteroidal anti-inflammatory drugs meclofenamate sodium and naproxen sodium on proteasome activity in cardiac cells, “advised caution when using NSAIDs either topically or orally” (source). Likewise, caution is warranted when using fluoroquinolones, as one can gather from reading any of the stories of pain and suffering caused by fluoroquinolones. Personally, I will do everything in my power to avoid both NSAIDs and fluoroquinolones for the rest of my life. Mitochondrial destruction, oxidative stress, and cell death aren’t things I want.

flu tox get help you need banner click lisa

Floatation Therapy for Fluoroquinolone Toxicity

From the ages of 12 through 18 (1992-1998) I lived in a big, somewhat ridiculous, but interesting, house. One of the ridiculous but interesting things about it was that there was a sensory deprivation tank in the attic above the master bedroom. We never used the sensory deprivation tank, which we referred to as “the floatarium,” because we had no idea how to hook it up or work it, and because it required that we haul 1,000+ pounds of epsom salt up several flights of stairs and a ladder to the attic where it was stored. To give you an idea of how out-of-the-way the floatarium was within the house, we surmised that either the house was built around it or that a crane was used to put it in through the roof–there was no way anyone could have gotten it through the front door. Anyhow, it was a novelty that I haven’t thought about much since the 1990’s.

I bring up the floatarium because I just got done with a session in a sensory deprivation tank, and I wonder if it would be good for my floxie friends. There are a few components of floatation therapy (apparently “sensory deprivation tank” sounded too severe, so most floatation spas call it floatation therapy or REST–Restricted Environmental Stimulation Therapy) that I think can be beneficial to floxies.

First, it’s a way to deeply meditate, and meditation has many demonstrated health benefits. I found meditation to be immensely helpful in my journey through fluroquinolone toxicity (you can read more about my thoughts on meditation for floxies here, here, and here). As a facilitator for meditation, floatation therapy is wonderful.

Second, floatation tanks are filled with 1,000+ pounds of epsom salt, which is magnesium sulfate. Magnesium has helped to alleviate many symptoms of fluoroquinolone toxicity for many people. Floatation may be a good way for floxies to soak up a lot of magnesium. It’s significantly more concentrated than any epsom salt bath you’re likely to take at home. It feels like soaking in magnesium “oil” (many floxies have found topical application of magnesium oil to be helpful), and I emerged from the tank with my skin feeling silky, smooth, and as if it was covered in magnesium oil. Magnesium also has many health benefits, and I wonder if many of the health benefits that are attributed to the meditation and sensory deprivation aspects of floating are actually from soaking up a large amount of magnesium. I think that both are generally good. (However, if you have any sort of kidney issues, or sulfur metabolism issues, magnesium sulfate can be harmful, so please be cautious and talk to your doctor about these issues.)

Third, floating is relaxing. When you don’t have any visual, auditory, or tactile sensory input, you are able to rest, relax, and just be. A lot of floxies suffer from anxiety, and floating may be a good way to relax.

Personally, I felt pretty good going into the floatation tank, and I felt even better–with a nice sense of peace and wellbeing–after I emerged from it. I think it was good for me, and it may be good for many of my floxie friends.

Some of the studied benefits of floatation therapy are noted in Discovery Magazine’s article, “Floating Away: The Science of Sensory Deprivation Therapy.

“In the early 1980s, a group of psychologists at the Medical College of Ohio initiated a series of experiments that looked at the physiological responses to REST. Both within and across flotation sessions, blood pressure and levels of stress-related hormones dropped – effects that persisted long after the cessation of the last flotation experience. In 2005, a meta-analysis further confirmed that flotation was more effective at reducing stress than other popular methods such as relaxation exercises, biofeedback or relaxing on the couch.

These results prompted researchers to investigate whether flotation could help patients with stress-related disorders. The treatment was used as a primary intervention for disorders as diverse as hypertension, headaches,insomnia and rheumatoid arthritis; all of these studies showed positive effects in small sample sizes. Those suffering from intractable chronic pain particularly benefited from weekly REST sessions: their level of perceived pain dropped, their sleep improved and they reported feeling happier and less anxious. An ongoing project is investigating the use of flotation for fibromyalgia pain management with positive preliminary results.”

As the author of “Floating Away: The Science of Sensory Deprivation Therapy” notes, the sample sizes for these studies were small, but still, it’s interesting, promising, and worth a try for many people.

It should be noted that if your kidneys aren’t functioning well, or if you don’t respond well to epsom salt baths at home, floatation therapy probably isn’t for you. However, for many floxies, I think that floatation therapy has some interesting benefits that may be helpful.

For floxies and non-floxies alike, rest, relaxation, and even sensory deprivation are healthy and helpful. For those who have access to a floatation spa (they can be found in most big cities), it’s something to look into.

flu tox get help you need banner click lisa

 

A Full Recovery

Several of the recovery stories on floxiehope.com describe people who are mostly, but not fully, recovered. A lot of the recovery stories are from people who can see the light at the end of the fluoroquinolone toxicity tunnel, but they’re not completely out of the tunnel yet. Even though these recovery stories are not of complete recoveries, I think that they’re still valuable. The show that life can go on through and after fluoroquinolone toxicity, and they describe the physical, emotional, mental, and spiritual journey while it is still vivid and raw. Many of the people with partial recovery stories on floxiehope.com continue to improve. Life goes on–sometimes with bumps in the road/setbacks–but often toward continued recovery.

Some people who have read these partial recovery stories have asked, quite reasonably, if there are any people who FULLY recover, and return to their pre-flox capabilities. To this, I answer, “YES, I have fully recovered.” Me – Lisa – the author of the majority of the posts on this site. I have fully recovered.

When I wrote my recovery story in 2013 I was 90-something-percent recovered. I still had some autonomic nervous system issues and the fear and anger that came with getting poisoned by ciprofloxacin lingered. I wrote an update in 2014 that noted some features of my continued recovery.

Since 2014, I have continued to improve. I was physically completely healed in 2014, but the emotional journey has continued. I have worked through a lot of fear and anger since 2014. Both the fear, and most of the anger, have largely gone away.

I have healed.

I write this not to brag, or to diminish the experiences of those who don’t recover (there are some people who don’t recover, and they deserve our sympathy and support), but, as always, to give others hope. A full recovery is possible. I have fully recovered. I hope for the same for all who read this.

I recently (I got home day before yesterday at the time of writing this) visited Australia on vacation and was able to do all the things that I wanted to with ease. I went on a tour of Tasmania with a bunch of 20-something year olds and was able to keep up with them. We hiked to waterfalls and jumped off sand-dunes. It was fun! My feet didn’t hurt and I had plenty of energy to keep up with them. I was able to eat whatever I wanted. I slept decently–even on couches and in hostels. It was a good vacation. It was exactly what it would have been if I had never gotten floxed. I have recovered.

I hope that my recovery, and these pics of my vacation, give you hope that recovery, and a life that is full of activity and adventure, are possible. I posted these pictures, and others, on my facebook wall as I was touring Sydney, Melbourne and Tasmania. Several people thanked me for sharing the photos because they gave them hope that this type of travel is possible post-flox. It is possible. I had a fantastic time, and I hope that you are each able to take a similar journey, or whatever else you desire that indicates a full recovery.

All aspects of my journey through fluoroquinolone toxicity took time. I encourage you all to be patient with yourselves. I couldn’t have traveled through Australia like I did earlier this month when I was first floxed. I can do it now though, and that feels really, really, really good.

Cradle Mountain Tasmania Harbor Bridge Sydney Melbourne Montezuma Falls Tasmaia Sand Dunes Tasmania

 

flu tox get help you need banner click lisa

Hyperparathyroidism

Several floxies have reported that they have been diagnosed with hyperparathyroidism.

Though I think that fluoroquinolones can cause hyperparathyroidism, I am not going to go into that right now – I hope to explore the connections in future posts.

For right now, I want to encourage all floxies to get tested for hyperparathyroidism.

The parathyroid gland controls the amount of calcium in the body. Calcium homeostasis (which helps set the stage for magnesium homeostasis as well) is so important, it has its own entire little endocrine system to control it – the parathyroid glands.

Hyperparathyroidism is caused by a non-cancerous tumor on one (or more) of the four parathyroid glands. This tumor causes the parathyroid glad to release too much parathyroid hormone (PTH), which causes high blood calcium. Though parathyroid tumors are not cancerous, they are dangerous because high blood calcium can cause “osteoporosis, chronic fatigue, kidney stones, stroke, high blood pressure and increased cancer risks (a partial list).” Additionally, hyperparathyroidism is linked to tendon ruptures and many of the other symptoms of fluoroquinolone toxicity.

In a recent article in The Atlantic, “Garry Shandling and the Disease You Didn’t Know About: The comedian suffered from hyperparathyroidism, a rare and under-publicized condition that can sometimes be fatal, James Fallows notes that his doctor stated:

“a parathyroid disorder was about as damaging as smoking a pack of cigarettes per day. It weakened the bones; it raised the risk of heart attacks and some cancers, and kidney stones too; it caused mood disorders; and—I’ll confess the most alarming—it led to memory lapses, attention failures, and dementia. The bone-weakening is because the hyperactive gland continually draws calcium out of the bones and into the blood serum. Most of the other problems are because of disturbances in calcium’s role as a neurotransmitter. My wife later told me that she thought I was getting dumber by the day in the year before the operation.”

The initial tests for hyperparathyroidism involve testing levels of calcium and PTH in the blood. Getting your calcium and PTH levels tested is relatively easy, non-invasive, and inexpensive. Your doctor should be able to test your levels of both calcium and PTH (note that calcium and PTH should be tested simultaneously). High, or even high-normal levels of calcium and PTH are red flags, and test results should be paid very close attention to.

It should be noted that PTH has a very short half-life (about five minutes), and that multiple tests may need to be run in order to get an accurate reading on your calcium/PTH levels. If both calcium and PTH are way out of range, you have your diagnosis of hyperparathyroidism. If both calcium and PTH are high normal – you test again – and maybe a third time – to see if this is consistent, getting worse, or if you just happened to “catch a high” one time.  If you are getting consistently higher results on both – that’s a problem.

Unfortunately, I’ve also heard from some floxie friends whose doctors weren’t concerned about very high calcium levels. Please be aware that excess calcium is a VERY big deal – it’s not bonus good calcium making your bones stronger – it’s calcium being stolen from your bones that is now circulating through your body. If your calcium tests come back high, or even high-normal, I encourage you to chat with your doctor about the possibility of you suffering from hyperparathyroidism. If your doctor isn’t concerned about this possibility, I suggest finding another doctor.

This video is an excellent overview of hyperparathyroidism:

The solution for hyperparathyroidism is surgical removal of the parathyroid gland that has the tumor (the tumor is called an adenoma). Luckily, we don’t need all four of our parathyroid glands to live a healthy and full life – people do just fine with as few as one parathyroid gland. I certainly don’t take surgery lightly, but it is a solid solution to the problem of hyperparathyroidism.

A lot of good information about hyperparathyroidism can be found on http://www.parathyroid.com/.

 

 

flu tox get help you need banner click lisa

 

How to Stop Overprescribing Fluoroquinolone Antibiotics

Overprescription of Antibiotics

I found this New York Times article, How to Stop Overprescribing Antibiotics, to be really interesting. Doctors know that antibiotic resistance is a serious problem–the word has gotten out sufficiently, but that knowledge hasn’t done much to change antibiotic prescribing patterns. Doctors are still overprescribing antibiotics, despite knowing that antibiotic resistance poses a significant threat to both modern medicine and human health.

I’m not sure what the root of this overprescribing is. It may be from a lack of knowledge of what ailments antibiotics should be prescribed for (many cases of prostatitis, as well as many sinus infections, aren’t bacterial), tradition (it’s the way it has “always” been done), a notion that antibiotics “can’t hurt,” patient pressure on the physician to do something, or if there’s another root to the problem.

Antibiotic overprescription IS a problem though. It’s a problem not only because of bacterial resistance to antibiotics, but also because of the links between antibiotic use and many of the diseases of modernity, and because some popular antibiotics (FLUOROQUINOLONES in particular, but I’ve heard from people who have been devastated by other antibiotics too) are causing multi-symptom, chronic illnesses that are devastating people’s lives.

Overprescription of Fluoroquinolone Antibiotics

How can we get doctors to stop overprescribing fluoroquinolone antibiotics? The NYT article has some good insight and possible courses of action for floxie advocates.

“we asked a group of doctors to place a signed poster in their exam rooms pledging to follow standard guidelines on antibiotic prescription. This tactic, which pressured doctors to act consistently with their own publicly stated commitments, reduced inappropriate prescribing 20 percentage points relative to doctors in a control group who displayed a poster with generic information about antibiotic use.”

A 20% reduction in inappropriate prescribing is pretty good. At the very least, it’s a good place to start.

Guidelines for Prescribing Fluoroquinolones

What should the guidelines for fluoroquinolone (Cipro, Levaquin, Avelox, Floxin, and their generic equivalents) prescriptions be? My suggestions are:

  • Only prescribe fluoroquinolones for verified infections.
  • Only prescribe fluoroquinolones in life-or-death situations.
  • Only prescribe fluoroquinolones if there is no safer antibiotic that can be tried.
  • Review the warning label with the patient.
  • Review the black box warning with the patient. Notify the patient that black box warnings are the most severe warning possible before a drug is removed from the market.
  • Inform the patient that severe musculoskeletal problems have been experienced post-exposure to fluoroquinolones, including, but not limited to, tendon tears that occur months or years after exposure to the drug has stopped.
  • Note that, per the FDA, “A review of the FDA Adverse Event Reporting System (FAERS) was performed to characterize a constellation of symptoms leading to disability that had been observed during FDA monitoring of fluoroquinolone safety reports. This constellation of symptoms will be referred to in this review as ‘fluoroquinolone-associated disability’ (FQAD). While most of the individual AEs that exist within FQAD are currently described in fluoroquinolone labeling, the particular constellation of symptoms across organ systems is not. Individuals with FQAD were defined as U.S. patients who were reported to be previously healthy and prescribed an oral fluoroquinolone antibacterial drug for the treatment of uncomplicated sinusitis, bronchitis, or urinary tract infection (UTI). To qualify, individuals had to have AEs reported in two or more of the following body systems: peripheral nervous system, neuropsychiatric, musculoskeletal, senses, cardiovascular and skin. These body systems were chosen as they had been observed to be frequently involved with the fluoroquinolone reports describing disability. In addition, the AEs had to have been reported to last 30 days or longer after stopping the fluoroquinolone, and had to have a reported outcome of disability.”
  • Fluoroquinolones cause mitochondrial damage and dysfunction, and mitochondrial damage/dysfunction is linked to many diseases, including autoimmune diseases.
  • Fluoroquinolone effects include serious psychiatric problems.
  • Fluoroquinolones are a likely endocrine disruptor.

I suspect that if those guidelines were in every physician’s office, fluoroquinolone prescriptions would decrease significantly.

Present Alternatives to Antibiotics

The NYT article also notes:

“we showed that doctors tended to prescribe less aggressive medications when such options were presented more prominently (one by one, in a vertical column), with more aggressive options presented less prominently (grouped side by side, in a single category). Previous research suggested that listing alternatives individually made them appear more popular — and therefore more appropriate — than when they were grouped together. And indeed, we found that doctors were roughly 12 percent less likely to order more aggressive medications, such as antibiotics, if these options were grouped together, compared with when they were listed individually.”

I think that’s an excellent idea! Give the physician more information and the patient more options. Sounds great!

fluoroquinolone-lawsuit-banner-trulaw

Use Social Pressure and Physician Psychology to Achieve Goals

Another approach mentioned in the NYT article is:

“In one approach, doctors received a monthly email informing them of their performance relative to that of their peers. Those with the lowest inappropriate antibiotic prescribing rates were congratulated for being ‘top performers.’ Doctors who were not top performers were told ‘You are not a top performer.’ The email also included a personalized count of unnecessary antibiotic prescriptions and the count for a typical top performer. This ‘peer comparison’ approach almost completely eliminated inappropriate prescribing: from 19.9 percent in the pre-intervention period to 3.7 percent during the post-intervention period — an 81 percent reduction.”

An 81% reduction is impressive and significant!

Peer comparison is powerful because it taps into doctor’s egos. For fluoroquinolones, I think that guilt should be tapped into as well, and with the low-ranking notification should be a story of someone suffering from fluoroquinolone toxicity. These stories may be anecdotal, but they are real stories of people being devastated by these drugs.

Public Accountability

Another approach to curbing antibiotic use mentioned is:

“whenever doctors prescribed an antibiotic that was not clearly called for by the diagnosis, the electronic health record system asked them to provide a short ‘antibiotic justification note.’ The note would be entered into the patient’s medical record and would be visible to others. Introducing this speed bump into the work flow, along with the prospect of social accountability, reduced the inappropriate prescribing rate from 23.2 percent to 5.2 percent — a 77 percent reduction.”

Public accountability is a good thing. This could work well for curbing unnecessary fluoroquinolone prescriptions.

Start Curbing Antibiotic Overprescription by Curbing Fluoroquinolone Overprescription

The article concludes that, “Taken together, our studies suggest that simple and inexpensive tactics, grounded in scientific insights about human behavior, can be extremely effective in addressing public health problems.”

I think that the methods noted above could effectively cut fluoroquinolone use too.

Maybe trying to curb overuse of all antibiotics is too much to take on. Perhaps taking on overuse of one category of antibiotics at a time is an effective thing to do. I suggest that those who are interested in curbing antibiotic overprescription start with fluoroquinolones.

 

flu tox get help you need banner click lisa

 

 

Fluoroquinolone Antibiotics and Oxalate Overload

According to the wikipedia entry for oxalobacter formigenes, “Quinolone, a broad-spectrum antibiotic, kills O. formigenes. If a person’s gastrointestinal (GI) tract lacks this bacterium, and therefore lacks the primary source for the oxalyl-CoA decarboxylase enzyme, then the GI tract cannot degrade dietary oxalates which on digestion get absorbed easily and after some vitamin B6-modulated partial metabolical degradation in the body, is excreted in the kidney, where it precipitates with calcium to form calcium oxalate kidney stones.”

Basically, this means that quinolones (and some other antibiotics) kill oxalobacter formigenes, a bacteria in the GI tract that is crucial for breaking down oxalates. When oxalates aren’t broken down properly in the GI tract, they move on to the kidneys where they form calcium oxalate kidney stones.

Kidney stones aren’t the only problems that oxalates cause though. Oxalates cause methylation problems that inhibit detoxification. According to Dr. Rostenberg’s article, OXALATES AND MTHFR: UNDERSTANDING THE GUT-KIDNEY AXIS:

oxalates create biochemical problems that make methylation issues worse. Since oxalate problems cause sulfate problems, the genes most effected will be the SULT and other phase II related pathways. The sulfate molecule is key in order for the liver to perform the daily task of detoxification. If sulfate levels drop, then the body cannot use the SULT pathway to detoxify. Instead it will be forced to use other Phase II pathways which can put greater demand on pathways that are also genetically slowed down. When we consider other slowed Phase II detoxification gene SNPs such as NAT2, ALDH, COMT, GSH, GSS, UGT, and SOUX we can begin to see that a lack of sulfate molecules can have a broad negative impact on all of our detoxification pathways.”

Dr. Rostenberg goes on to say:

As you will soon see, when oxalate levels are high, sulfate levels drop slowing down detoxification. Low sulfate levels put extra stress into the methylation cycle to provide the body with sulfate molecules. In individuals with an impaired methylation cycle this can provoke methylation issues such as high homocysteine, developmental disorders, gallbladder dysfunction, hormone imbalances, excess inflammation, poor growth and to name but a few. So with oxalate issues and the biochemical chaos it creates, a great deal of stress is placed on the methylation cycle.”

In OXALATES AND MTHFR: UNDERSTANDING THE GUT-KIDNEY AXIS Dr. Rostenberg asserts that a poorly functioning gallbladder is a cause of oxalate overload. While I agree that a well-functioning gallbladder and liver are necessary for all aspects of health, I wonder if the decimation of vital gut bacteria, like oxalobacter formigenes, by antibiotics like fluoroquinolones, is what starts oxalate toxicity damage.

Fluoroquinolone Destruction of Vital Gut Microbes

A floxie friend just noted that she got her microbiome mapped by ubiome and, “my Ubiome results tell me I have NO oxalobacter at all.” Additionally, her results showed that, “I also have NO bifidobacterium strains AT ALL.” (According to the wikipedia article for bifidobacterium, “Different species and/or strains of bifidobacteria may exert a range of beneficial health effects, including the regulation of intestinal microbial homeostasis, the inhibition of pathogens and harmful bacteria that colonize and/or infect the gut mucosa, the modulation of local and systemic immune responses, the repression of procarcinogenic enzymatic activities within the microbiota, the production of vitamins, and the bioconversion of a number of dietary compounds into bioactive molecules.”) Both oxalobacter and bifidobacerium are necessary for many aspects of health.

Might the root of fluoroquinolone toxicity, and possibly other chronic diseases of modernity, be the killing off vital microbes like oxalobacter and bifidobacerium?

Oxalate Overload

The depletion of oxalobacter formigenes, and other microbes, doesn’t just affect the gut. As Dr. Rostenberg noted above, oxalate problems (caused by not breaking down oxalates in the gut – caused, in part, by killing oxalobacter formigenes with antibiotics) lead to sulfate problems, which leads to methylation problems, which leads to detoxification problems, which leads to heavy metal overload and toxicity. Additionally, “Sulfate helps us seal our leaky gut and strengthen our body’s bones, ligaments and tendons; and it is required for Phase II detoxification of all kinds of nasty toxins, hormones and heavy metals. In fact, sulfate is so important for our health that it is the 4th most common nutrient in our blood stream!” (source) Sulfate is also necessary for proper hormonal function, “When sulfate levels are low, the body won’t just have disturbed liver function, it will also suffer with all kinds of hormone problems.” (source) As anyone who has experienced hormonal dysfunction will attest, hormonal disorders affect every aspect of health. In “Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection?” it is noted that fluoroquinolones are endocrine disruptors that lead to disruption of thyroid function, and additional information about the effects of fluoroquinolones on the thyroid can be found on http://fluoroquinolonethyroid.com/.

The most thoroughly documented and accepted consequence of oxalate overload is kidney-stones. Kidney-stones are incredibly painful, and they can cause damage to the kidneys. In addition to kidney-stones, it is noted in The Role of Oxalates in Autism and Chronic Disorders that, “Even though oxalate crystals are most common in the kidney, they also can form in virtually any other tissue in the body, including the brain and the blood-brain barrier. Oxalate crystals resembling pieces of glass can form in the heart muscle. As the heart muscle contracts, these pieces of oxalate crystals actually tear into the tissue. If these crystals are deposited in skeletal muscle, normal movement and exercise can be very painful. I’m convinced this is also one of the factors responsible for fibromyalgia. Oxalates may also cause thyroid disease as they react in thyroid tissue.”

In THE DOWN SIDE TO HIGH OXALATES – PROBLEMS WITH SULFATE, B6, GUT, AND METHYLATION, Dr. Rostenberg goes over the connections between oxalates, sulfate depletion (by oxalates), and liver problems, hormonal problems, GI problems including leaky gut, cancer, and autism. Additionally, it’s linked to high homocysteine which is linked to blood clots, strokes, and heart attacks.

Fluoroquinolones and Oxalates

There are literally twenty plausible theories as to how fluoroquinolones cause fluoroquinolone toxicity—a multi-symptom, often chronic, illness that is similar to autoimmune diseases, mysterious diseases like fibromyalgia and CFS/ME, endocrine disruption diseases, and more. Though much of the research into fluoroquinolone toxicity has focused on what fluoroquinolones do to cells (especially mitochondria), as information about the importance of the microbiome emerges, it becomes plausible (and even likely) that the destruction of important microbes by fluoroquinolones is a large contributor to fluoroquinolone toxicity.

In Missing Microbes: How the Overuse of Antibiotics Is Fueling Our Modern Plagues Dr. Martin J. Blaser hypothesizes that the extinction of critical microbes is behind many of the diseases of modernity, from autoimmune diseases to obesity. Dr. Blaser focuses primarily on h. pylori and its connection with both preventing inflammation and causing ulcers, but he acknowledges that many other microbes play important roles in human health and well-being. I wonder if oxalobacter formigenes and other microbial communities are just as interesting, contradictory, and important as h. pylori. I suspect so, and I also suspect that the basic hypothesis that missing microbes (from antibiotic use, glyphosate, and the Western diet) are causing the many diseases of modernity, is, indeed, true.

Fluoroquinolones obliterate the gut, and kill both helpful and harmful bacteria. In wiping out essential species of bacteria in our gut, are they starting the cycle of inflammation and chronic disease in genetically susceptible individuals? It certainly sounds like a reasonably hypothesis to me.

Can the gut be healed?

Can species of bacteria that have been depleted by fluoroquinolone antibiotics be replenished? Do probiotic supplements help? Can changing one’s diet help? What about fecal transplants?

Those are all million dollar questions that many researchers are working on answering. Unfortunately, I don’t know the answers to them. I am certainly hopeful that the gut can be healed, and I know from personal experience that healing after fluoroquinolone antibiotic toxicity can occur. Organizations like The Human Microbiome Project and Ubiome have many smart and capable scientists who are working to answer those questions, and more.

Until those questions can be more thoroughly answered, here are some helpful resources:

Resources for Healing

Trying Low Oxalates Facebook Group – https://www.facebook.com/groups/TryingLowOxalates/

http://www.lowoxalate.info/

Information about a low-oxalate diet can be found on Low Oxalate Info: Hope and Healing on the Low Oxalate Diet.

Dr. Rostenberg’s protocol for reducing oxalates can also be found here – http://www.beyondmthfr.com/high-oxalates/. Additional information from Dr. Rostenberg can be found through the Contact page on http://www.beyondmthfr.com/.

Additional information about MTHFR and other gene mutations, and how they affect health, can be found on https://mthfrsupport.com/.

If you would like to get your microbiome sequenced through Ubiome, here is a 10% off linkhttp://ubiome.refr.cc/VDDLNWP .

ubiome logo

Dr. Rostenberg’s videos on oxalates:

 

 

flu tox get help you need banner click lisa

 

Tell Your Fluoroquinolone Toxicity Story

I encourage every person who has been hurt by fluoroquinolone antibiotics (or any other pharmaceutical) to tell his or her story.

Telling your story of pain caused by fluoroquinolones can be cathartic and relieving. In writing your story, you are saying to yourself and others, “My pain is real. I was hurt by a prescription drug. It happened to me. Listen, because this is important.”

These stories ARE important! Patient stories are important for advocacy, for warning others, for changing minds, and more. The world will be a better, safer, place if physicians and patients alike are aware of the adverse effects of fluoroquinolones and all other drugs. Patient stories help people to understand the severity of adverse drug reactions, so that they understand the real risk associated with each prescription drug. Neither our doctors nor our friends are psychic, and they need to be told about adverse drug reactions in order to understand them. True stories about the effects of fluoroquinolones on individual lives vividly illustrate the risks of these drugs—much more than studies, or data, or warning labels.

Patient stories can also help researchers to understand the real-world effects of pharmaceuticals, and the direction that a researcher chooses to look can be influenced by patient reports and stories.

Because patients reported their symptoms to the FDA, the warning labels for fluoroquinolones have changed to note that peripheral neuropathy is a potentially permanent side-effect of fluoroquinolones. Patient reports and advocacy also led to the November 5, 2015 FDA meeting where the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee decided that the current warnings on fluoroquinolone labels are not sufficient. We still have a long way to go, but it should be acknowledged that patients, and their stories, are driving the FDA to action, and that is quite special and unusual.

Reporting Fluoroquinolone Toxicity to the FDA

Please, even if you don’t tell your story to anyone else, report your adverse reaction to the FDA. Instructions on how to report your reaction to the FDA can be found here – http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm.

fluoroquinolone-lawsuit-banner-trulaw

Telling Your Story of Fluoroquinolone Toxicity on the Internet

If you would like to tell your story on a web site, there are a few options:

The Fluoroquinolone Effects Study

Please, please, please also tell your story to the researchers who are conducting the Fluoroquinolone Effects Study. The Fluoroquinolone Effects Study is being led by Dr. Beatrice Golomb and it is through UCSD. The Fluoroquinolone Effects Study is a chance to tell your story in your own words to scientists who are studying fluoroquinolone toxicity. More information about the study can be found here – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html.

Media Coverage of Fluoroquinolone Toxicity

Hundreds of people have spoken out to the media about fluoroquinolone toxicity. Thank you to each of you who told your story! I encourage all of you to reach out to the media, because even though many of our stories have been told, many more are needed. Write letters and emails, call your newspaper editors and tv reporters. Please do whatever you can to amplify your voice when telling your story.

People are Listening

People are listening to our screams and our stories. I regularly hear from people who say something along the lines of, “I requested a safer antibiotic because I heard from you that Levaquin is dangerous.” I hear from doctors, nurses, pharmacists, and other medical professionals who are getting information about fluoroquinolone toxicity from Floxie Hope. The number of people in The Fluoroquinolone Toxicity Group on Facebook has increased steadily to almost 5,000 people. Many of those people share information about fluoroquinolone toxicity with their friends. The word is getting out, and that’s a very good thing!

Thank you to all of you who are telling your stories of pain caused by fluoroquinolones! These stories are important, and I even think that it’s healing for you to tell your story.

 

flu tox get help you need banner click lisa

 

True Health Made Simple Podcast Featuring Tara

True Health

In episode 31 of the True Health Made Simple podcast, Tara speaks out about her experience with fluoroquinolone toxicity. Please listen and share!

http://truehealthkc.libsyn.com/podcast/031-what-you-need-to-know-abut-the-most-dangerous-class-of-antibioticsfrom-a-patients-perspective

https://itunes.apple.com/us/podcast/true-health-made-simple/id1015211573?mt=2

When Tara sent me the link to the podcast she said, “I just wanted to share – some doctors, like mine – are wanting to get the word out about the dangers of fluoroquinolones so my doctor interviewed me about my story. I let the listeners know to get more info go to floxiehope.com or the QVF website. I think it brings hope to know some doctors really do care.”

It is PHENOMENAL that Tara’s doctors wanted to interview her to spread the word about how fluoroquinolones negatively affected her life, and that Tara was willing to speak out and be interviewed. A HUGE THANK YOU to Tara and her doctors at True Health!

More about Tara can be found on “Tara’s Story – Healing from Levaquin Effects.

Information about True Health can be found on their web site, http://www.truehealthkc.com/, and through their facebook page – https://www.facebook.com/TrueHealthKC.

Thank you for listening and sharing! Great job, Tara!

 

flu tox get help you need banner click lisa

 

Antibiotic Brain Fog – Some Possible Solutions

I experienced memory loss, disconnectedness, loss of reading comprehension, and slow-thinking while I was going through fluoroquinolone toxicity. Losing my ability to think, and feeling as if I had lost my ability to do my job (I held onto my job and my employer was kind and patient through the whole ordeal), were truly terrifying. I felt stupid. I was scared that I was stupid, or worse–that I had some sort of permanent brain damage.

Thankfully, those symptoms subsided, and my mind has recovered along with the rest of me. I describe the things I did to heal my brain after fluoroquinolone toxicity in the post, “Healing my Brain After Cipro.” The things that helped my brain to heal are:

  1. Time
  2. Meditation
  3. Sudoku Puzzles
  4. Reading
  5. Writing
  6. Researching

All of those things truly did help me. Each one is a process, not a quick-fix. Being patient and letting the healing hands of time do their magic helped my brain to heal. Meditating every day for a minimum of 20 minutes helped to calm my mind, increase my confidence, give me patience, increase my concentration, and enable me to feel more connected to the world and the people in it. Sudoku puzzles, reading, writing, and researching all helped in that using my brain seemed to make it stronger and more capable.

I wholeheartedly recommend each of those things to everyone who is struggling with brain-fog. They’re helpful, empowering, and they can’t hurt.

I want people to realize that their brains can heal without doing anything drastic, and that with time and use, your floxed mind can heal along with the rest of you.

However, many people look at that list and say, “Those things aren’t going to work for my SEVERE brain fog. I need something more drastic than sudoku puzzles.” Fair enough.

I am risk-averse and, frankly, I’m not a very good biohacker because I’m risk-averse. Therefore, I tend toward gentle, non-invasive, healing methods.

Many of you are willing to take more risks than I am though, and for you, I think that the advice of Dave Asprey (“the world’s most famous biohacker” according to Men’s Fitness Magazine) in his post, “13 Nootropics to Unlock Your True Brain” may be helpful. I highly recommend that each of you read the article because Dave has a lot of excellent insight in it. I’m going to go over some of his recommendations and how they relate to “floxies” in this post.

Dave’s nootropic recommendations:

  1. Modafinil (Provigil), armodafinil (Nuvigil), and adrafinil. I have heard of anyone suffering from antibiotic brain-fog trying these nootropics. If you have something to report about them, please let me know and I’ll add it to this post.
  2. Racetams. Look at the comments on the bottom of the post, “The Mitochondrial Link – Fearless Parent Podcast #81.” The person commenting as “Your Future” gives a lot of interesting information about racetams and mitochondria.
  3. Nicotine. Yes, seriously, nicotine. More information about nicotine can be found HERE. For floxies, it should be noted that fluoroquinolones inhibit CYP1A2 enzymes. Nicotine induces CYP1A2 enzymes. There are significantly safer ways to try nicotine than through smoking or chewing tobacco products and some of those options can be found in “Is Nicotine the Next Big Smart Drug?” It should also be noted that broccoli also induces CYP1A2 enzymes, and it has none of the drawbacks that nicotine has. However, this post is about things that can perk-up your brain, and nicotine can do that while broccoli, unfortunately, can’t.
  4. Amphetamine (Adderall). A floxie friend told me that Adderall helped him immensely. Be careful. Adderall, of course, is not without consequences. Here is the warning label for Adderall – http://www.accessdata.fda.gov/drugsatfda_docs/label/2007/021303s015lbl.pdf. Here are patient reviews of Adderall – http://www.askapatient.com/viewrating.asp?drug=11522&name=ADDERALL+10. I wouldn’t take it, but that’s just my extremely biased opinion.
  5. L-theanine. From Ruth’s recovery story on Floxie Hope, “L-Theanine helps my brain to be a less noisy place—it ‘cuts the chatter’ as Dr. Whitcomb says.” More information about Ruth’s experience with L-theanine can be found in the comments on her story.
  6. Bacopa monnieri. Here are some Floxie Hope comments that note how people dealing with FQ toxicity responded to bacopa monnieri. https://floxiehope.com/comment-page-30/#comment-27587https://floxiehope.com/comment-page-46/#comment-37325https://floxiehope.com/ruths-story-cipro-toxicity/comment-page-6/#comment-35332.
  7. LSD. I haven’t heard from anyone who has tried LSD post-flox. If anyone has anything that they’d like to share with me and/or the Floxie Hope audience, please contact me. I find the stories of healings that occur post hallucinogenic drug use to be interesting. As I said though, I’m risk-averse and not eager to try things like LSD.
  8. Unfair Advantage. Unfair Advantage is a Bulletproof product that contains Bio-identical ActivePQQ™ and CoQ10. It enhances mitochondrial function. There is evidence that fluoroquinolones damage mitochondria, and mitochondrial support supplements such as Unfair Advantage may help floxies in multiple ways. I tried Unfair Advantage just before I was on Bulletproof Radio discussing fluoroquinolone toxicity. I was fully healed at the time that I tried it, so my experience may not be as dramatic as the experience of someone who is recently floxed, but I did find that it improved my energy level and concentration.
  9. Bulletproof Upgraded Aging Formula. I don’t know of any floxies who have tried the Bulletproof Upgraded Aging Formula. If you have an experience with it, please contact me.
  10. Forskolin & artichoke extract. I haven’t heard from anyone who has tried Forskolin & artichoke extract. Please contact me if you have an experience with it. As with all of the things mentioned in this section of this post, more information about them can be found on 13 Nootropics to Unlock Your True Brain. “Forskolin” is a very fun word though. Say it ’til you giggle, ’cause laughter really is good medicine. :p

Please do plenty of independent research before you try any of these. They all have their pros and cons and informed consent really is important.

Things like a healthy diet, getting enough sleep, minimizing anxiety, and healing the gut can also be helpful for getting through fluoroquinolone-induced brain-fog. Those things have no negative side-effects, so concentrating on them is highly recommended.

I hope that the things mentioned in this post help you to get your mental capacity back! Please be patient and kind to yourself as you go through the healing process. Healing takes time, and it may take trying a variety of different things before you find things that heal your mind and body. Patience and kindness toward yourself as you go through the healing process certainly can’t hurt, and they will probably even help.

flu tox get help you need banner click lisa

 

 

 

Fluoroquinolones and Epigenetic Triggers – Possible Connections with Charcot-Marie-Tooth Disease

The post, Do Fluoroquinolone Antibiotics Trigger Charcot-Marie-Tooth and Other Genetic Diseases?, was published on Hormones Matter today (3/7/16).

I hope that you find the connections to be interesting, and not too frightening.

A couple things to note: First, Charcot-Marie-Tooth disease has nothing to do with teeth – Dr. Tooth was one of the people who discovered and named it. Second, though there are potential connections between fluoroquinolone toxicity and several genetic diseases, this is just a hypothesis, so please take it as just that. The connections are interesting, and should be explored. However, I don’t want anyone reading this, or anything else I write, to think that you are doomed.

Many “floxies” have expressed that they feel as if they have aged 20 years in a matter of weeks or months. I wonder if, on a cellular level, they actually have. I wonder if fluoroquinolones age cells and, in doing so, trigger diseases that would have remained dormant until much later in life. I wonder how fluoroquinolones, and other pharmaceuticals, affect gene expression (epigenetics), and if those effects are passed down from one generation to the next. I honestly don’t know the answer to these questions.

IF the damage mechanism for fluoroquinolones is genetic damage, and underlying diseases are triggered, reactions would be different for each person. This could explain the huge variation in fluoroquinolone toxicity reactions. Unfortunately, if this is the case, I think that we’re a long way from proving connections between fluoroquinolones and the triggering of diseases that are thought to be genetic in nature. Epigenetics is a relatively new area of study, and the triggering of epigenetic changes via pharmaceuticals isn’t something that I’ve run across much in my research. I think that it’s a topic that deserves significantly more attention.

Please read and share “Do Fluoroquinolone Antibiotics Trigger Charcot-Marie-Tooth and Other Genetic Diseases?” Thank you!

_____________________________________________________________________________

The following fascinating article was published under a Creative Commons License, meaning that it can be published freely. It was originally published on www.mosaicscience.com – a great site that I highly recommend you check out. The article is about uncovering some of the genes behind Charcot-Marie-Tooth Disease. It’s also about being your own biggest advocate, and pushing to solve health “mysteries.”

DIY diagnosis: how an extreme athlete uncovered her genetic flaw

When Kim Goodsell discovered that she had two extremely rare genetic diseases, she taught herself genetics to help find out why. Ed Yong tells her story.

Kim Goodsell was running along a mountain trail when her left ankle began turning inward, unbidden. A few weeks later she started having trouble lifting her feet properly near the end of her runs, and her toes would scuff the ground. Her back started to ache, and then her joints too.

This was in 2002, and Kim, then 44 years old, was already an accomplished endurance athlete. She cycled, ran, climbed and skied through the Rockies for hours every day, and was a veteran of Ironman triathlons. She’d always been the strong one in her family. When she was four, she would let her teenage uncles stand on her stomach as a party trick. In high school, she was an accomplished gymnast and an ardent cyclist. By college, she was running the equivalent of a half marathon on most days. It wasn’t that she was much of a competitor, exactly – passing someone in a race felt more deflating than energising. Mostly Kim just wanted to be moving.

So when her limbs started glitching, she did what high-level athletes do, what she had always done: she pushed through. But in the summer of 2010, years of gradually worsening symptoms gave way to weeks of spectacular collapse. Kim was about to head to Lake Superior with her husband, CB. They planned to camp, kayak, and disappear from the world for as long as they could catch enough fish to eat. But in the days before their scheduled departure, she could not grip a pen or a fork, much less a paddle. Kim, a woman for whom extreme sports were everyday pursuits, could no longer cope with everyday pursuits. Instead of a lakeside tent, she found herself at the Mayo Clinic in Rochester, Minnesota.

After four days of tests, Kim’s neurologist told her that she had Charcot–Marie–Tooth disease, a genetic disorder that affects the peripheral neurons carrying signals between the spinal cord and the extremities. It’s rare and carries a varying suite of symptoms, but Kim’s are typical, starting at the feet and heading upward. The neurologist explained that as her neurons died, the surviving cells picked up the slack by sprouting new branches – a workaround that masked the underlying degeneration until the rate of cell death outpaced the rate of compensation. Hence Kim’s crash.

The neurologist told her to come back in a year so he could check how quickly the disease was progressing, but that it would certainly progress. Charcot–Marie–Tooth has no cure.

The Goodsells drove home and Kim, exhausted, slept for two days. When she woke up, she got to work. “My reaction to things that I have no control over is to find out as much as I can about them,” she says. She started by reviewing her clinic notes, and quickly noticed something odd: there was hardly any mention of her heart.

Years before she learned that she had Charcot–Marie–Tooth, Kim discovered that she had another genetic disorder – one that affects the heart, arrhythmogenic right ventricular cardiomyopathy (ARVC). ARVC gradually replaces the heart’s synchronised beating muscle with fat and scar tissue. It nearly killed her once; she still has an internal defibrillator to keep her heart beating. But even though it was there in her medical records, her neurologist hadn’t seen fit to mention it in his report. “It meant nothing to him,” says Kim. “I thought: Wow, that’s really funny.”

It wasn’t the omission per se that bothered her. It was the implicit suggestion that her two life-long diseases – one of the heart, one of the nervous system – were unrelated. That, in the genetic lottery, she was a double-loser. That lightning must have struck her twice.

Surely not, she thought. Surely there must be a connection.

I meet Kim at La Ventana in Baja California, Mexico. She spends winters here, mostly kitesurfing. The sand and water are postcard-quality, but La Ventana has barely any resorts or big hotels. So in the still air of the morning when kites won’t fly, the beach is empty. Kim likes it that way. She has been up since dawn, cycling among the cacti and swimming in the ocean with pelicans and frigatebirds for company. She hauls herself out of the water, dries off, and sits on a small terrace overlooking the ocean. Her face is tanned and wrinkled, and she manifests no obvious signs of her two conditions. That’s partly because she has developed workarounds to mask and control her symptoms. She brushes her teeth on one foot to offset her balance problems. She uses massage balls and spends hours stretching to stop her muscles and joints from seizing up.

“See how I’m sitting?” she says. She has pulled her legs up on the chair to her left, and her back is curving that way too.

“My spine curves this way” – she nods to the right – “so I sit curving to the opposite side. I consciously do the opposite.”

She has a history of that. In 1979 Kim was a mathematically gifted pre-med student at UC San Diego, her hometown college. Her path was clear: graduate, and follow her older brother into medical school. But on a trip to South America – her first time out of San Diego – she ended up hiking for three months instead of working at a clinic as she’d planned. When she returned home, her academic future seemed pale and uninspiring. And then CB – her future husband, at this point a fellow student and regular running partner – started taking her out on wilderness hikes. “He introduced me to the mountains and I thought: this is life,” Kim says.

Within months of graduating Kim dropped out. Her brother, who had been a father figure to her growing up, was furious. “We hardly spoke. CB was his friend and he couldn’t even look at him,” she says. “He said I was being completely irresponsible.” Kim and CB married in 1983, and aside from a brief stint as restaurant owners, they have never had 9-to-5 jobs. They mostly earned a living by buying and remodelling run-down houses and selling them at a profit, and then heading into the wilderness until their supplies ran out. In 1995 they found themselves in La Jolla, California, working on an especially stressful renovation that left Kim drained.

That was when her heart problems began. Kim started having episodes of ventricular tachycardia – the lower chambers of her heart contracted so quickly that they pumped out their contents before they had a chance to fill up, compromising the flow of blood (and therefore oxygen) to the rest of her body. One minute she would be racing down Highway 1 on her bike; the next she would feel like she had been “unplugged”, as if “there was nothing driving anymore”. A cardiologist at Scripps Memorial Hospital told her she’d need an internal defibrillator, but Kim said no – she was worried it’d get in the way of wearing a backpack on a run, and she had faith that she’d be able to deal with the ventricular tachycardia by slowing down and relaxing. “I didn’t want something implanted in me that would limit my opportunities of experiencing life,” she says.

The next week, the Goodsells finished their renovation, packed up and headed into the Sierra Nevada with no return date in sight. It was an unorthodox solution to a life-threatening heart condition: to vanish into the boondocks, far away from any medical care, to do even more exercise.

The thing is, it was the right one. The outdoors rejuvenated her. She was gone for one-and-a-half years, and her heart behaved the whole way through. That unbroken streak only broke when the Goodsells rejoined their old lives in 1997. Back in California, they were once again cycling down Highway 1 when her heart started to beat erratically again. This time, it did not stop.

By the time the paramedics arrived, Kim was slumped against a wall and her chest was shaking. Her tachycardia had lasted for almost an hour and progressed to ventricular fibrillation – that is, her heartbeat was erratic as well as fast. She blacked out in the ambulance, on the cusp of cardiac arrest.

She woke up at Scripps Memorial Hospital. The same cardiologist was there to greet her. Through further tests he discovered that the muscle of her right ventricle was marbled with fat and scar tissue and not contracting properly. These are classic signs of ARVC. It had only been properly described in 1982, back when Kim was regularly signing up for triathlons. ARVC is a major cause of fatal heart attacks in young people, and athletes are especially vulnerable as exercise can accelerate the disease’s progress. And since Kim wouldn’t stop exercising, she finally conceded to the defibrillator. They implanted it the next day.

Kim referred to the implant as her “internal terrorist”. Every shock was debilitating and led to months of anxiety. She had to learn to cope with the device, and it took several years to regain the joy she drew from hardcore exercise. That was when the other symptoms started.

These diseases are rare. In a crowd of a million adults, around 400 will have Charcot–Marie–Tooth and between 200 and 400 will have ARVC. But genetic diseases in general are actually quite common – 8 per cent of people have at least one. This paradoxical combination has fuelled the rise of many online communities where people with rare disorders can find each other. Heidi Rehm, a geneticist at Harvard Medical School, studies a condition called Norrie disease that mostly affects the eyes and ears. She developed a registry for Norrie disease patients to share their experiences, and learned that almost all the men with the disease had erectile dysfunction. “A patient goes to their doctor with blindness and deafness, and erectile dysfunction isn’t the first thing you ask about!” says Rehm. “Patients drove that discovery.” Through communities, families often make connections about their medical problems that their doctors miss.

But Kim was never one for relying on others. She tried a support group when she got her implant, but it did nothing for her. She dipped her toes in patient forums, but was always frustrated by the rampant misinformation. “People just weren’t interpreting things correctly,” Kim says. “I wanted more rigour.”

She started by diving into PubMed – an online search engine for biomedical papers – hunting down everything she could on Charcot–Marie–Tooth. She hoped that her brief fling with a scientific education would carry her through. But with pre-med knowledge that had been gathering dust for 30 years and no formal training in genetics, Kim quickly ran headfirst into a wall of unfamiliar concepts and impenetrable jargon. “It was like reading Chinese,” she says.

But she persisted. She scratched around in Google until she found uploaded PDFs of the articles she wanted. She would read an abstract and Google every word she didn’t understand. When those searches snowballed into even more jargon, she’d Google that too. The expanding tree of gibberish seemed infinite – apoptosis, phenotypic, desmosome – until, one day, it wasn’t. “You get a feeling for what’s being said,” Kim says. “Pretty soon you start to learn the language.”

“Kim has an incredible ability to understand the genetic literature,” says Martha Grogan, a cardiologist from the Mayo Clinic and an old friend of CB’s who now coordinates Kim’s care. “We have a lot of patients who ask great questions but with Kim, it’s like having another research fellow.”

At the time the Goodsells were staying at a friend’s house at Lake Michigan. Kim would sit on the balcony for eight hours a day, listening to the water and teaching herself genetics. Too weak to explore winding hillside trails, she channelled her perseverance and love of isolation towards scientific frontiers and the spiralling helices of her own DNA. “I spent hundreds of hours,” she says. “CB lost me during this process.”

Kim looked at every gene linked to Charcot–Marie–Tooth – there are more than 40 overall, each one imparting a slightly different character to the disease. One leapt out: LMNA, which codes for a group of rope-like proteins that mesh into a tangled network at the centre of our cells. This ‘nuclear lamina’ provides cells with structural support, and interacts with a bunch of other proteins to influence everything from the packaging and activation of genes to the suicide of damaged cells. Given this central role, it makes sense that mutations in LMNA are responsible for at least 15 different diseases, more than any other human gene. These laminopathies comprise a bafflingly diverse group – nerve disorders (like Charcot–Marie–Tooth), wasting diseases of fat and muscle, and even premature ageing.

As Kim read about these conditions and their symptoms, she saw her entire medical history reflected back at her – the contracted muscles in her neck and back, her slightly misaligned hips and the abnormal curve in her spine. She saw her Charcot–Marie–Tooth disease.

She also saw a heart disorder linked to the LMNA gene that wasn’t ARVC but which doctors sometimes mistake for it. “Everything was encapsulated,” she says. “It was like an umbrella over all of my phenotypes. I thought: This has to be the unifying principle.”

Kim was convinced that she had found the cause of her two diseases, but the only way to know for sure was to get the DNA of her LMNA gene sequenced to see if she had a mutation. First, she had to convince scientists that she was right. She started with Grogan, presenting her with the findings of her research. Grogan was impressed, but pragmatic. Even if Kim was right, it would not change her fate. Her implant was keeping her heart problems under control, and her Charcot–Marie–Tooth disease was incurable. She didn’t see a point. But Kim did. “I wanted to know,” she says. “Even if you have a terrible prognosis, the act of knowing assuages anxiety. There’s a sense of empowerment.”

In November 2010 Kim presented her case to Ralitza Gavrilova, a medical geneticist at the Mayo Clinic. She got a frosty reception. Gavrilova told Kim that her odds of being right were slim. “I got this sense that she thought I’d made an unfounded shot in the dark,” says Kim. “That I didn’t understand the complexity of the genome. That I had been reading the internet, and they come up with all sorts of things there.”

Gavrilova pushed Kim towards a different test, which would look at seven genes linked to ARVC. Her insurance would cover that, but if she insisted on sequencing the DNA of her LMNA gene, she would have to foot a $3,000 bill herself. Why waste the money, when it was such an unlikely call? But Kim was insistent. She knew that the known ARVC genes explain only a minority of cases and that none of them was linked to neural problems. In all her searching she had found only one that covered both her heart and nervous problem. Eventually, Gavrilova relented.

Kim, meanwhile, disappeared down to Baja in Mexico. Gavrilova’s scepticism had worn her down and she fully expected that the results would come back negative.

When she returned home in May, there was a letter waiting for her. It was from Gavrilova. She had been trying to call for months. The test had come back positive: on one of her two copies of LMNA Goodsell had a mutation, in a part of the gene that almost never changes. LMNA consists of 57,517 DNA ‘letters’, and in the vast majority of people (and most chimps, monkeys, mice and fish) the 1,044th position is filled by a G (guanine). Kim had a T (thymine). “All evidence suggests that the mutation found in this patient might be disease-causing,” Gavrilova wrote in her report.

In other words, Kim was right.

“I’m beyond impressed,” says Michael Ackerman, a geneticist at the Mayo Clinic. He specialises in inherited heart disorders like ARVC that can cause sudden death at any time. Such diseases make for people who do their homework, but Ackerman describes most as “Google-and-go” patients who check their diagnosis online, or read up about treatment options. Kim had written up her research as a white paper – 36 pages of research and analysis. “Kim’s the only one who handed me her own thesis,” he says. “Of all the 1,000-plus patients I’ve taken care of, none have done extensive detective work and told physicians which genetic test to order.”

He thinks she nailed it too. It is unlikely to be the whole story – Kim almost certainly has other mutations that are affecting the course of her disease – but LMNA “is certainly the leading contender for a unifying explanation, without there being a close second,” he says. “The evidence is pretty good for this being a smoking gun.”

The test had vindicated her hypothesis, but it also raised some confusing questions. Heart problems are a common feature of laminopathies, but those mutations had never been linked to ARVC, Kim’s specific heart malfunction. Had she been misdiagnosed? A few months later, Kim stumbled across a new paper by a team of British researchers who had studied 108 people with ARVC and found that four had LMNA mutations (and none of the standard ones). “To the best of our knowledge, this is the first report of ARVC caused by mutations in LMNA,” they wrote. They didn’t know about Kim’s work – they couldn’t have, of course. But she knew. Kim had beaten them to it. “I was so excited, I was running up and down the beach,” she says.

When patients get solutions to their own genetic puzzle, it’s always professional geneticists who do the solving. Take James Lupski. He has been studying Charcot–Marie–Tooth for decades, and discovered the first gene linked to the condition. He also has it himself. In 2010 he sequenced his own genome and discovered a previously unidentified mutation responsible for the disease. In other cases anxious parents have been instrumental in uncovering the causes of their kids’ mysterious genetic disorders after long diagnostic odysseys, but only by bringing their cases in front of the right scientists.

Kim, however, was an amateur. And to her, sequencing was not a Hail Mary pass that would – maybe, somehow – offer her answers; it was a way of confirming a carefully researched hypothesis.

“People have been talking about empowering consumers since there was an internet,” says Eric Topol, a geneticist at the Scripps Clinic. “But finally, we’ve reached a point where someone can delve into their condition beyond what the top physicians at the Mayo Clinic could. They couldn’t connect the dots. She did.”

Topol, a self-described “digital medicine aficionado”, argues that Kim is a harbinger of things to come. In his book The Creative Destruction of Medicine, Topol foretells a future where doctors are no longer the gatekeepers of medical information. Advances like personal genetic testing or sensors that measure molecules in the blood will give patients the power to better understand themselves and to exercise more control over their healthcare. Medicine is becoming more democratic.

Kim is a vanguard of that change. She lacked academic knowledge, but she had several advantages over her physicians and other researchers in the field. She had detailed first-hand knowledge of her own symptoms, allowing her to spot connections in the scientific literature that others had missed. She could devote hours to learning everything about her niche disorders – time and focus that no clinician could reasonably spend on a single case. And she had unparalleled motivation: “There’s nothing that engages your curiosity more than being confronted by your death,” she says.

It is also becoming ever easier for that curiosity to lead to discovery. In the past geneticists would try to diagnose patients by looking at their medical history and deciding which genes might be worth sequencing, as Gavrilova tried to do for Kim. The approach makes sense, but it only ever confirms known links between genes and diseases.

One way of finding new links is to sequence a patient’s exome – the 1 per cent of their genome that contains protein-coding genes. It’s cheaper than sequencing a full genome, but allows researchers to hunt for disease-related genes by interrogating every possible suspect simultaneously, without having to whittle down the list first. “Suddenly, we’re finding patients presenting with Disease X who have mutations in genes never previously associated with that disease,” says Daniel MacArthur, a geneticist at Massachusetts General Hospital. “That’s happening in nearly every disease field right now.”

Exome sequencing is now barely more expensive than sequencing much narrower gene panels. MacArthur says that the cost has already fallen below $1,000 and may halve again this year. And once patients have that information, they could use it to find others with the same mutations and check if they have the same symptoms.

Currently, the results from DNA sequencing studies are largely squirrelled away in boutique databases that collate mutations for specific diseases or genes. The ironically named Universal Mutation Database covers mutations in only 34 genes, including LMNA. Broader ones exist, but for decades they have been incomplete, rife with mistakes, or inaccessible, even to other researchers – a sad state of affairs that MacArthur laments as the “single greatest failure in human genetics”. Now, though, the National Institutes of Health are developing an open database called ClinVar that covers all disease mutations. “A lot of us are putting our hopes on this,” says MacArthur. “We need to come up with resources that empower people to make surprising links, which is hard to do if the data are broken up by disease or gene.”

But for every Kim, there are others who research their own conditions and come up with wrong answers. In one study four non-specialist volunteers tried to diagnose 26 cases from the New England Journal of Medicine by Googling the symptoms. They got less than a quarter right. Genetic diseases arguably lend themselves to confusion and misinformation. They are often both debilitating and enigmatic, and getting sequenced can offer little comfort beyond a diagnosis. If mainstream science has no easy answers to offer, many patients will follow any lead, no matter how weak. “There’s a tendency for people to spin very convoluted stories on tenuous threads of evidence. Even scientists do that,” says MacArthur. “I have heard of a lot of rare-disease patients who come up with hypotheses about their disease, and very few turn out to be correct.”

Even Kim’s tale could have taken a different turn. Last year, a team from the Baylor College of Medicine sequenced the exomes of 250 people with suspected genetic disorders, and found that four of them had two diseases caused by mutations in different genes. In other words, Kim’s hunch about her two diseases sharing a common root could well have been wrong. Lightning does occasionally strike twice.

“We almost always have to spend time with patients decoding and recoding the impression that they’ve acquired about their disease from their own homework,” says Ackerman. Kim was an exception, he says, and her other physicians echo that view. She is unique. She is one-of-a-kind. She is extraordinary. High praise, but it conceals the implicit suggestion that she is an outlier and will continue to be.

“Bullshit,” says Kim. “I hear this all the time: that I’m an exception. That the patient of the future is not going to do what I did.” She bristles at the very suggestion. “I almost take offence when I hear that what I’ve done is exceptional.”

We are talking over coffee at La Ventana. This is her fifth winter here, and she and CB have just celebrated their 30th wedding anniversary. CB leans back against a wall, quiet and contemplative. Kim sits forward, animated and effusive. She’s drinking decaf because of her heart, but it’s not like she needs the caffeine. “Take Rodney Mullen. He’s a real genius,” she says. Mullen is not a figure from science or medicine. He is, in fact, a legendary skateboarder, famous for inventing mind-blowing tricks that previously seemed impossible. One of them is actually called the ‘impossible’. “He executes these movements that defy reason, films them and publishes them on YouTube,” Kim says. “And inevitably, within a few weeks, someone will send him a clip saying: This kid can do it better than you. He gave that trick everything he had, he’s pulling from all of his experience, and here’s this kid who picks it up in a matter of weeks. Because he learned that it’s possible to do that. Rodney just acts as a conduit. He breaks barriers of disbelief.”

Her protestations aside, Kim is unique. Throughout her life she had built up a constellation of values and impulses – endurance, single-mindedness, self-reliance and opposition to authority – that all clicked in when she was confronted with her twin diagnoses. She was predisposed to win. Not everyone is. But as genetic information becomes cheaper, more accessible and more organised, that barrier may lower. People may not have to be like Kim to do what she did.

Kim isn’t cured. Her LMNA discovery offered her peace of mind but it did not suggest any obvious treatments. Still, she has made a suite of dietary changes, again based on her own research, which she feels have helped to bring her nervous symptoms under control. Some are generic, without much hard science behind them: she eats mostly organic fruit, vegetables, nuts and seeds, and avoids processed food. Others are more tailored. She drinks ginger tea because it thins the blood – she says that many people with laminopathies have problems with clots. Whether her choices are directly slowing the progress of her diseases or triggering a placebo effect, she is fit and happy. Her defibrillator hasn’t shocked her in months. And, of course, she still exercises constantly.

Up the hill from the beach we can see the little yellow house where she wrote the 36-page booklet that put together all her research. It convinced her doctors, yes, but it did even more. She showed it to her brother, now an anaesthesiologist, and it allowed them to reconcile. “It’s like I’ve finally done something worthy with my life,” Kim says. “He told me I’d done some really good research and that I’d missed my calling as a medical researcher. I told him I think I’ve been doing exactly what I needed to do.”

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

flu tox get help you need banner click lisa

Floxie Hope Podcast Episode 15 – Richard

Richard Floxie Hope Podcast

I had the pleasure of interviewing Richard for episode 15 of The Floxie Hope Podcast. Please check it out –

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

http://www.floxiehopepodcast.com/episode-015-richard/

At the age of 23, Richard was “floxed” by a single pill of Avelox (while he was also on NSAIDs). For the following 4 months he was acutely ill, and for ten months following that he was slowly recovering. Richard goes over his journey through fluoroquinolone toxicity in the interview – what helped, what hurt, and what he learned along the way. He has excellent advice to share with all of you.

Thank you very much for listening!

flu tox get help you need banner click lisa

Overcoming the Fear that Comes with Fluoroquinolone Toxicity

Having your body fall apart is terrifying. Losing your mental capacity is even scarier. Hearing stories of people who have had their lives devastated by Cipro, Levaquin, Avelox or Floxin, when you are experiencing an adverse reaction to one of them, can be devastatingly frightening. Delayed reactions are scary. The connections between fluoroquionolone toxicity and autoimmune diseases are scary. This whole mess is scary and it’s completely understandable and normal for you to be afraid.

Try not to be though.

I know that it’s easier said than done to not be terrified, to calm down, and to know that you will be okay, and I’m not trying to minimize the legitimate fear at all, but, unfortunately, fear isn’t helpful–it’s actually harmful, and it needs to be nipped in the bud as quickly as possible.

Your symptoms are real, and they’re not in your head. But fear and anxiety can amplify all of your fluoroquinolone toxicity symptoms and make them worse. You want to get better, not worse, and I wholeheartedly believe that getting fear and anxiety under control are necessary for healing.

It’s okay to have a freak-out period. Most of us do. Forgive yourself for freaking out, but move on to less fear-based reactions as quickly as possible.

Tell yourself that you will be okay. Try to believe it. Try to believe that you will recover. Full recoveries are possible. I have fully recovered, and so have many others. Your body will heal. It will. I don’t know what your timeline will be, or whether or not you will make a full recovery, but I do know that each of us has a huge amount of resiliency and strength and that healing and recovery are both possible.

Take some deep breaths. Feel the air go in and out of your body and try to appreciate the beauty of being alive–it’s pretty amazing when you think about it. These horrible drugs knocked you down and hurt you, but they didn’t kill you. You’re still alive and breathing. With every breath comes healing. Breathe deeply–it helps, it really does.

I took a Mindfulness Based Stress Reduction class early in my floxing. It helped immensely and I recommend it to everyone. It helped to calm me down and dissipate some of the fear I was experiencing.

I encourage you to get away from anything that increases your fear. The information about fluoroquinolone toxicity that you can find on the internet is incredibly valuable, but reading about the horrible things that fluoroquinolones can do can induce fear and anxiety. I encourage you to get off the internet (including this site). Do something that is enjoyable that takes your mind off of fluoroquinolone toxicity – take a bath, or a walk, or watch a funny movie, or hug a loved one, or meditate, or anything else that is enjoyable and anxiety-reducing. See if you feel better after doing an anxiety-reducing activity, and if you do, stick with it.

Have hope, my friends. You can get through this. You WILL get through this. It’s a difficult hurdle, and a horrible time in your life. I understand and appreciate that. But it will change, it will get better. Try to believe it. Try to have hope.

Hang in there.

I wrote these “attitude tips” when I wrote my recovery story. I still think they’re helpful:

Try not to compare yourself to how you used to be.  I used to hike 20 miles in a day.  I can’t do that anymore, but I can hike 3 miles today and I couldn’t do that when I first got floxed. Compare yourself to how you were yesterday, not to how you were before you got floxed.

Do something – anything – to work toward healing, every day.  Walk a little further than you did yesterday.  Meditate.  Take an Epsom Salt bath.  Get an acupuncture treatment.  Do a puzzle.  Whatever makes you feel good – do it.  Every little step helps.

Don’t kill yourself.  Have hope.  You will get better.

You’re not crazy.  You’re sick.  Have hope.  You will get better.

You’re not stupid.  You’re sick.  Have hope.  You will get better.

Try not to identify yourself as sick.  The mind is a powerful thing so try to stay positive. It’s hard, I know.  But try, because it’s worth it.

You will have bad days.  They will pass.  This all will pass.  It is not permanent.  You are strong –  present tense.  You were knocked down, but you weren’t killed.  You will get better.

Don’t quit your job.  Try to maintain as much normalcy in your life as you can.

It is not your fault.  Even if you knew better, even if you demanded the most powerful drug possible from your doctor, even if you self-medicated, even if you coerced your doctor into giving you the fluoroquinolone antibiotic, even if the infection that you were treating was something that you got because of doing something stupid, or from sex, even if you continued to take it after you started to get sick, even if you floxed your child/parent or other loved one – IT IS NOT YOUR FAULT.  You are sick.  You are poisoned.  You are not to blame for your sickness or for the fact that you are poisoned.  Who to blame is a discussion that I don’t want to get into because I want this to be positive, but it is not you.  You are not to blame.  You are a victim.  It is not your fault.

Please don’t fall too deeply into the pit of fear and despair. Being scared and angry and anxious are all normal and appropriate reactions, but they’re destructive, so the sooner you can get past them, the better.

Know that the fear will pass. Know that everything you are going through right now will pass. Each breath is a new one–a new beginning. Breathe deeply, and try to breathe out some of the fear.

You will be okay. Try to believe it.

Hugs,

Lisa

 

flu tox get help you need banner click lisa

Mitigating Fluoroquinolone Damage

What if a loved one must take a fluoroquinolone because it is the only option available to save their life? How do they avoid getting “floxed” and experiencing the devastation that fluoroquinolones have brought to too many lives?

Undeniably, there is a range of reactions to fluoroquinolones – from people not reacting badly at all, to people being permanently disabled and in excruciating pain, and everything in between. If a loved one must take a fluoroquinolone because it is the only viable option, is there any way to push them toward the “not hurt” end of the spectrum?

Who Gets Floxed?

At this time, no one knows what makes someone susceptible to getting “floxed.” No one knows why some people tolerate fluoroquionlones well but other people don’t. No one knows why an individual can tolerate fluoroquinolones fine at one time, but have a horrible reaction another time. No one knows what genetic predispositions contribute to some people getting hurt by fluoroquionlones.

The epidemiologists say that the risk of fluoroquinolone-induced tendon ruptures is higher in those over the age of 60. However, there are many “floxies” under the age of 60, and many of them suffer from tendon ruptures and other musculoskeletal problems.

It is hypothesized in, “Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection?” that, “anyone with any underlying genetic predisposition, or possibly harboring a subclinical, latent, or silent endocrinopathy might be ‘pushed over the edge’ into full blown clinical pathology” by fluoroquinolones. But I have a friend who is over the age of 60 and who has thyroid problems, as well as osteoporosis, who recently took a course of Cipro and was fine afterward. I saw her yesterday and she is doing well. I would have thought that she would have been predisposed toward an adverse reaction… but she wasn’t.

As a strong and athletic 32 year old who had no history of illness, I certainly didn’t think that I was predisposed to having an adverse reaction to Cipro, but it happened. Cipro made me sick for a while.

There seems to be a certain amount of “Russian Roulette” going on when one takes a fluoroquinolone. There aren’t any tests to determine who will react poorly to fluoroquinolones, and even known risk factors only sometimes make a difference. Some people seem to get lucky, while others get very, very unlucky. I realize that attributing adverse reactions to bad luck and “Russian Roulette” is a frustrating non-answer, but, unfortunately, that’s where we’re at right now – the land of frustrating non-answers. Welcome to being a floxie.

Despite the seeming randomness of adverse reactions, there is sufficient evidence that people who are over the age of 60, athletes, those who have a history of psychiatric illness, those with a history of benzodiazepine withdrawal, people who regularly use NSAIDs, people using corticosteroids, people who have an existing autoimmune or endocrine disorders, those who are immunocompromised, and people who have a mitochondrial disorder (in any of its manifestations, including ME/CFS and fibromyalgia) should avoid fluoroquinolones if at all possible. (More about this can be found in the post, “Don’t Take Cipro, Levaquin or Avelox If….” on Hormones Matter.)

When it’s the Only Option

Given that few people think that an adverse drug reaction will happen to them, and that antibiotic resistance is reducing the number of safe antibiotics available to treat many infections, many people are stuck with fluoroquinolones being the only option available to them.

If this is the situation for you (yes, I do realize that many/most floxies would rather die than take a fluoroquinolone again, but that’s not the case for everyone) or a loved one, is there anything that can be done to mitigate the damage done by the drug?

Maybe.

fluoroquinolone-lawsuit-banner-trulaw

Mitigating Fluoroquinolone Damage

Studies have noted that magnesium and vitamin E can mitigate some of the damage done by fluoroquinolones. In, Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population, it is noted that:

“Pfister et al [25] studied the effects of oral vitamin E (tocopherol) and magnesium supplementation on ciprofloxacin-associated chondrotoxicity. Juvenile rats were divided into 4 groups: those fed a normal diet, a vitamin E– enriched diet, a magnesium-enriched diet, or a diet enriched with both vitamin E and magnesium. These diets were initiated 10 days before the rats were given ciprofloxacin. Two days after fluoroquinolone exposure, cartilage samples from the knee joints were histologically examined, and cartilage and plasma concentrations of magnesium, calcium, and vitamin E were measured. Fluoroquinolone-associated cartilage changes were observed in all groups, but the supplemented groups showed significantly less change, with the magnesium and vitamin E combination group demonstrating the least change. Both plasma and cartilage concentrations of magnesium and tocopherol were significantly higher in the supplemented groups than in the animals that received the normal diet, which supports the potential role of magnesium deficiency in the pathogenesis of fluoroquinolone-associated chondrotoxicity.”

Does that mean that magnesium and vitamin E should be taken along with fluoroquinolones to mitigate damage? Maybe. It should be noted that magnesium inhibits fluoroquinolones both for better and for worse, and that the magnesium may decrease the ability of the FQ to fight the bacterial infection.

Additionally, it is noted in “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells,” that:

“Mice treated with clinically relevant doses of bactericidal antibiotics similarly showed signs of oxidative damage in blood tests, tissue analysis, and gene expression studies. This ROS-mediated damage could be reversed by the powerful antioxidant N-acetyl-l-cysteine (NAC) without disrupting the bacteria-killing properties of the antibiotics.”

Since NAC doesn’t disrupt the bacteria-killing properties of the antibiotics, it’s a better bet (IMO).

It is also noted in Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population, that:

“A mitochondrial-targeted form of ubiquinone (MitoQ) demonstrated a larger protective effect than did untargeted ubiquinone. Oxidative stress frequently occurs in the mitochondria [22], and fluoroquinolone-induced oxidative damage to mitochondria in tenocytes and chondrocytes has been reported [26].”

Some “floxies” have found MitoQ to be helpful in healing fluoroquinolone-induced damage. Perhaps it can also prevent the damage from occurring.

If a loved one of mine had to take a fluoroquinolone, I would try to get him or her to load up on magnesium before-hand, and I would try to get vitamin E, NAC, and MitoQ into him/her while the FQ was being administered.

I certainly wouldn’t claim to know for sure that they would be safer while taking those antioxidants, but it’s worth a try.

Russian Roulette

People should be aware of the dangers of fluoroquinolones, and they should know that there is a certain amount of Russian Roulette that is being played with every pill administered. For better or for worse, I don’t think that people really understand fluoroquinolone toxicity until it happens to them. As scary as it is for those of us who have been hurt by fluoroquinolones to stand by and watch while our loved ones take these pills, some of us will have to do just that at some point. Maybe some of the fluoroquinolone-induced damage can be mitigated by the supplements mentioned above. I hope so.

 

flu tox get help you need banner click lisa

K-PAX for Floxies

KPAX Immune

Just to note upfront, I have no affiliation with K-PAX. I have not been asked by them to write any of this. The following post is for your information only and I hope that it’s helpful!

In October, 2015 I received the following email:

I was recently introduced to K-PAX Pharmaceuticals who is conducting research on mitochondrial toxicity, thought to be a cause of the symptoms associated with Fluoroquinolone use.

Their main immune support formula was originally created to decrease the toxicity caused by antiviral medications in the HIV population. These medications caused similar symptoms, including peripheral neuropathy, as seen in Fluoroquinolone use. This Immune Formula was shown to achieve a 33% decrease in peripheral neuropathy for these patients. Their goal was to provide high levels of antioxidants in order to combat free radicals associated with the medication toxicity. Patients taking this formula also had a 26% increase in their CD4 count. This formula boosted their immunity by improving their mitochondrial health. This research was published in the Journal of AIDS (Kaiser, J. D., Campa, A. M., Ondercin, J. P., Leoung, G. S., Pless, R. F., & Baum, M. K. (2006). Micronutrient supplementation increases CD4 count in HIV-infected individuals on highly active antiretroviral therapy: a prospective, double-blinded, placebo-controlled trial. JAIDS Journal of Acquired Immune Deficiency Syndromes, 42(5), 523-528).

The reason I started looking in to K-PAX’s Immune Formula was after coming across the 2013 FDA Pharmacovigilance Review entitled, “Disabling Peripheral Neuropathy Associated with Systemic Fluorquinolone Exposure.” This paper draws the same connection between damaged mitochondria function from medication toxicity and peripheral neuropathy. In it, the FDA states, “A human prospective study was done to evaluate oxidative stress in patients taking different doses of ciprofloxacin, levofloxacin, and gatifloxacin for 5 days for complicated UTI. Superoxide dismutase (SOD), and endogenous antioxidant enzyme that removes free radicals, glutathione, another major antioxidant, plasma antioxidant status and lipid peroxides were evaluated in the 52 patients. Results showed that ciprofloxacin had a significant increase in lipid peroxide levels from the first to the fifth day, almost doubling. There was also a significant decrease from (73% to 32%) in SOD, as well as glutathione. The results were similar for levofloxacin, although to a lesser degree, but these results were not seen with gatifloxacin. This study showed how increase in lipid peroxides can quickly overwhelm what is left of the plasma antioxidants, leading to impairment of cell integrity and cell death.”

From what I understand, K-PAX Pharmaceuticals is currently focusing their research on chronic fatigue syndrome and fatigue related to other medical conditions. They are looking at mitochondrial dysfunction as the cause for these conditions as well. They just published a paper about their clinical trial using their Immune Support Formula for mitochondrial damage in patients with chronic fatigue syndrome. (Kaiser, J. D. (2015). A prospective, proof-of-concept investigation of KPAX002 in chronic fatigue syndrome. International journal of clinical and experimental medicine, 8(7), 11064).

I wanted to share this information with you and your readers as I have been doing a lot of research for my own condition and see more and more reference to mitochondrial damage as a culprit so I decided to give it a try. I have now been using the K-PAX Immune Formula for the past 6 months and have seen a significant decrease in my neuropathy and improvement in my energy level. My brain fog has lifted and I feel an improvement in my overall health. I like the fact that this product is actually helping to heal my mitochondria and reverse the cell damage caused by these toxic medications.

After corresponding with the author a bit, I sent an email to the folks at K-PAX asking if they had ever heard of it being used to help people through fluoroquinolone toxicity. The next day I received a phone call from the K-PAX Medical and Community Liaison, Deirdre. Deirdre wasn’t familiar with fluoroquinolone toxicity specifically, but she was familiar with mitochondrial toxicity, drug-induced mitochondrial toxicity, and many of the diseases that FQ toxicity resembles (like autoimmune diseases, fibromyalgia, ME/CFS, Gulf War Syndrome, etc.). Deirdre and I chatted extensively about fluoroquinolone toxicity and we decided that there was mutual interest in seeing how the K-PAX supplements worked for floxies. Deirdre/K-PAX offered to send 15 floxies a month’s supply of K-PAX Immune Support to see if it helped them.

I selected 15 floxies (first come, first serve – and I tried to get a decent age and gender mix) to receive the K-PAX Immune Support supplements and, about a week later, they started taking them.

Please note that this was in no way an official trial or experiment. I asked that all the floxie participants be willing to give me feedback about their experience, but that was the only obligation.

After everyone had time to complete the supplements, I sent out a survey to see how people liked the supplements and how they reacted.

You can view the survey results HERE.

To summarize*:

  • 37.5% of respondents had FQ toxicity symptom improvement while taking the supplements, 37.5% did not, and 25% of the respondents answered “other” to that question.
  • Fatigue relief and increased energy were two of the symptoms that some people experienced relief of.
  • 62.5% of respondents said that they would recommend K-PAX supplements to other floxies. Their reasons for recommending it to others included, “I have 20 years experience trying to recover, bio-available nutrients have been the only thing to combat the symptoms I have found,” and, “I have seen improvement in my fatigue,” and, ” if ANYTHING can help, it’s worth a try.”

If you would like to try the K-PAX supplements, they are available through the K-PAX store – http://www.kpaxpharm.com/. Additional information can be found on http://www.kpaxpharmaceuticals.com/.

I would also like to note that it was very generous of the K-PAX personnel to send their products to so many floxies, and for them to have a willing, open mind about fluoroquinolone toxicity. Their customer-service was phenomenal and I appreciate all their hard work on behalf of the floxie community very much! I also appreciate that they’re looking for solutions to complex, poorly-understood illnesses. Companies like K-PAX are part of the solution, as far as I can tell.

Again, I have no affiliation with K-PAX, and they didn’t even ask me to write this post. I’ve tried to be as open and transparent as possible, but if any of you have any questions about any of this, please don’t hesitate to contact me.

Thanks again to the K-PAX personnel and to all the floxies who were willing to try something new!

*Please note that the results of the survey may change if more people take the survey after this post is published.

 

flu tox get help you need banner click lisa

MTHFR Genetic Mutations and Fluoroquinolone Toxicity

I have been asked to write about how MTHFR (Methylene tetrahydrofolate reductase) genetic mutations relate to fluoroquinolone toxicity. The question is – Are people with MTHFR and other methylation-related genetic mutations more likely to get “floxed?” And, can addressing methylation issues help “floxies” to heal?

I think that the answers to both are yes. However, that’s about as far as my insight into the matter goes. For some reason, I have been reluctant to study genetic mutations and how they relate to FQ toxicity. It has been too daunting for me, thus far. So, I’m going to post some information that I found interesting about MTHFR mutations / methylation. For more thorough information about genetic variations/SNPs/mutations, I suggest that you look through the following sites:

All of the people who run those sites are familiar with fluoroquinolone toxicity, so please reach out to them if you have any questions. Dr. Amy Yasko also has a lot of great information about methylation, but I’m not sure whether or not she’s familiar with FQ toxicity – http://www.dramyyasko.com/our-unique-approach/methylation-cycle/.

Here are a few things about MTHFR mutations that I found to be interesting, so I’m sharing them with you. Please note that these are interesting observations from other floxies, not peer-reviewed journal articles.

From fellow floxie Ken J:

If memory serves many people get some help from fish. Many types of fish are high in b12. in fact things like beans, fish, leafy greens they each contain parts of the b12 folate and b6 cycles.

Funny thing about the B12 is it’s not naturally occurring in plants… or animals for that matter. Only certain types of bacteria can create it and those bacteria can accumulate in animal meats like liver, beef, fish, eggs ect.

Deficiency in B12 has symptoms like:

Weakness, tiredness, or lightheadedness
Heart palpitations and shortness of breath
Pale skin
A smooth tongue
Constipation, diarrhea, a loss of appetite, or gas
Nerve problems like numbness or tingling, muscle weakness, and problems walking
Vision loss
Mental problems like depression, memory loss, or behavioral changes
It can also result in high homocysteine which carries increased risk of heart attack, embolisms, stroke and bone breaks, as well as neuropathy, twitches, tinitis, nerve damage, and dementia like issues.

I’ve been shown in tests to have low folate and b12, and high homocysteine. Recently my homocysteine levels were 35mcmol/L where the standard should be 5-10. this is after the prescription of a z-pak antibiotic (post-flox).

The catch for me, and I find myself wondering if it may be the case for others, is I have a gene variant known as MTHFR that effects part of my bodies handling of b vitamins, and some variants in MTRR genes, which also relate to b vitamin cycles, predominantly in relation to neuro transmitters.

Where this becomes a problem is that the common vitamin supplements and “enriched” foods that use folic acid, b12 and other b vitamins, not only can’t be used by my body, but actually clog up things so they can actually behave like blockers for the natural FOLATE and methylcobalamin (b12). Making symptoms worse. and these fortified ingredients are everywhere.

So what does that have to do with the price of rice? or floxing? Turns out the cycles these vitamins regulate (and thus deficiencies or genetic variants that can cause deficiencies) are the methylization processes the body uses to get rid of toxins including the effects of some antibiotics. So an antibiotic may very well be the thing that sets things off balance and crash the whole house of cards.

I can’t say one way or the other if that is the case for other people, but I would definitely suggest anybody dealing with the effects of a floxing, get their folate, b6, b12, and homocysteine levels checked (and Vit D check wouldn’t hurt either). That will tell you some very important things to know.

I know about my gene variants because I’ve done genetic testing through 23and me and had my raw data checked against key genes in the methylization cycles through another site online. Some doctors can do a check for MTHFR these days as it’s starting to get attention. if you know or think this is an issue for yourself or a loved one, please use food sources of these vitamins rather than enriched, fortified or supplements until you can work with a nutritionist/holostic practitioner to get the right kinds of supplements that won’t actually make things worse. (Salmon, beef, liver, shrimp, clams, makerel, cod – for b12; beans, lentils, spinach, for folate; spinach, potato (including sweet potatos), and poultry for b6).

I think that getting B vitamins from foods that naturally contain them, and avoiding fortified foods, are excellent recommendations. Just a little personal note – I drank tons of kombucha post-flox. It is a good natural source of folate, B12, and other vitamins. Maybe it helped me to heal. I’m not sure, but I really do love the stuff.

fluoroquinolone-lawsuit-banner-trulaw

Ken’s note also got me wondering if all antibiotics, not just fluoroquinolones, are killing our B-vitamin synthesizing bacteria and leading to high levels of homocysteine which leads to all sorts of ailments. Maybe… to be explored.

 

I also found the following information, posted by Carol on FB, to be interesting:

histamine and mthfr

HISTAMINE REACTION… After taking NIACIN

If you took NIACIN and flushed and developed terrible itching that was not an allergy.

Flushing and itching is what would be expected to happened to a person who is an under-methylator. An under-methylator is someone who doesn’t have much SAMe to work with because their “Methylation Cycle” is not working very well due to any of the following genetic enzymatic variances.

MTHFR C677T…poor production of L-Methyl Folate
MTRR [slow]…trouble making Methyl-B12
MTR [slow]…trouble transferring a methyl group onto HOMOCYSTEINE
MAT [slow]…trouble turning Methionine into SAMe
CBS [slow]…a backup of the “Transsulfuration Pathway”
BHMT [slow]…poor conversion of Homocysteine into methionine in the LIVER and KIDNEY

When a person already has few available SAMe molecules and then they take Niacin they will develop this expected reaction of flushing and itching, but it is NOT an allergy.

………………..THE BIOCHEMISTRY….for those who are interested in details…….
The enzyme that inactivates Histamine inside cells is called Histamine-N-MethylTransferase [HNMT].
The HNMT enzyme requires SAMe [S-AdenosylMethionone] in order to do its job of inactivating histamine.

When such a person who doesn’t make enough SAMe takes Niacin their SAMe gets totally all used up.
Now, because there is insufficient SAMe the histamine doesn’t get inactivated as it should and the person will flush and get itchy because of the excess histamine that cannot be inactivated because of the lack of SAMe.

PICTURE:
HISTAMINE Metabolism…HNMT enzyme uses SAMe to inactivate Histamine

Well, that struck a chord, because about 6-months post-flox I took a niacin supplement and proceeded to break out in hives all over my body and I turned a lovely shade of reddish purple. I went to the doctor and she said, “yup, it’s the niacin.” I haven’t gotten my genes analyzed by an expert yet, but I certainly understand that I had a massive histamine release upon taking niacin, and that that’s an indication that I’m an under-methylator. Noted.

The tie-in of methylation and histamine is interesting too. Most floxies have symptoms of histamine intolerance. More information about that can be found in this post – https://floxiehope.com/2015/10/01/can-fluoroquinolones-activate-mast-cells/

Before you do anything to address your methylation issues, I encourage you to speak with an expert about it. The people who run the above-referenced sites can help you to analyze your genetic profile, and with that information it is best to consult with a doctor or naturopath.

 

Fellow-floxie Jason asked me to share this write-up:

Hello all. I’ve been researching Genetics and Methylation quite a bit in the last half a year, and I think of the few possibilities of why some people take a long time to heal, and why some never appear to heal at all, this has been one very very important reason that has been significantly overlooked and underestimated by the entire Floxie Community for a long time (of course in the Medical World this is all ‘relatively new’ though). I would like to discuss some aspects of this potential reason, and why I think they are important, in hopes that some struggling Floxies and anyone else out there suffering ‘might’ just find some healing.

—–

Methylation is behind MANY important process’s in the body (DNA activities and detoxing 2 big ones for Floxies IMO), and many experts like Dr. Amy Yasko and many more are finding that by testing and then treating people accordingly, many find relief from serious multi-year Malaises. Here are some reasons why (this is not a full list) Methylation can be very important to finding good health for many people:

– Repairing and Building DNA & RNA
– Glutathione synthesis and Detoxification
– Controlling Inflammation
– Myelination (very important in nerve health)
– Metal Detoxification
– DNA Silencing
– Energy Production
– Immune function
– Digestive issues
– Membrane fluidity
– Homocysteine metabolism
– Gene expression
– Cardiovascular health
– Protein Activity
– Cancer prevention
– Neurotransmitter balance

All of these are incredibly important to Health, many are affected by Floxing some of which I’ll discuss, and then if Methylation is also impaired, healing will be that much more challenging IMO. It has long been thought by many experts that Autism and similar Mental Ailments, Dementia, Alzheimer’s, and then even things like Chronic Fatigue, etc can all be caused by Metal toxicity, and they now think these accumulate more in these people than the average person due to under-Methylation and impairment of the above body functions.

———-

Okay so here is one small example on how it could apply to Floxies on only one aspect from above, where many are very important. Take someone with Peripheral Neuropathy for example, some quick searching reveals several sites noting chemo drugs (of which FQ’s are a “failed” one) can damage the Myelin Sheath. (There is one rat study that says 2 of the drugs don’t, so it might not be conclusive). Several sites also come up saying damaged Myelin Sheath can be the “cause” of PN.

Now take someone with an impaired Methylation cycle. You can take supplements til the cows come home, 25 different ones, but if they don’t address your impaired Methylation Cycle, Myelination is likely also impaired and the Sheath will still have trouble healing.

——

Another example with Tendons. Both Fluoride/Fluorine, and FQ’s, are widely known to disrupt collagen synthesis/metabolism, and can result in calcification of ligaments tendons muscle and thyroid cartilage and thus break down of the collagen, bone, tendons, skin, cartilage, lungs, trachea, and kidney etc. Many Floxies have reported loose joints and ligaments, tendon issues etc, almost like it melted away.

Here is what one website says about this: Quote “When collagen breaks down, tissues simply lose their substance, their framework. Fluoride dissolves the body’s glue simply by preventing new collagen from being formed. DR Y gives a masterful explanation of fluoride’s disruption of collagen, not only is the collagen incorrectly formed, it is wrongly mineralized. Some things in the body like bones and teeth, should be mineralized in order to give it hardness. Other collagen structures, like ligaments, tendons and, and muscles, should not be mineralized, in order to keep them flexible and resilient. Fluoride mineralizes the tendons, and muscles and ligaments, making them crackly and painful and inflexible. At the same time fluoride interferes with mineralization of bones and teeth, causing osteoporosis and mottling or dental fluorosis.”

Here are a few other websites discussing the Fluoride aspect of this, there are many studies out there on this and then also on how the FQ’s do tendon damage as well:
https://chansonalkalinewater.com/report-on-chlorine-and-fluoride/
http://www.agingwithhealth.com/DANGERS%20OF%20FLUORIDE.html
http://www.whale.to/a/fluoride_the_aging_factor.html

Here are a couple more good links on Tendinitis, Tendonosis, Tendinopathy:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312643/
http://www.tendonpain.org/index.shtml

Why this is all important I think, is related to a couple quotes from the last website linked, noting “the Tendonosis cycle begins when breakdown exceeds repair,” and “Tendinosis (including Achilles, rotator cuff, lateral and medial elbow, posterior tibial, digital flexor, and patellar), as well as carpal tunnel syndrome and even TMJ disorders are associated with a failed healing response in which the body’s fibroblasts produce abnormal tendon and ligament collagen”.

Now I would like to take those statements and relate them to Floxies, DNA and Methylation. DNA damage, can cause “abnormal DNA” to be formed when DNA is getting rebuilt for some time, until the body slowly corrects this through its DNA repair process, if the process is working and if it is not being overwhelmed by continual damage from more toxins being released or reintroduced. IF DNA is the core of the problem for any injury (not saying it is for Floxie tendons etc, but the FQ’s DO damage DNA), and in the case of tendons not from other things like overuse, inflammation etc, its easy to see why NO supplements and/or therapies etc once again would seem to help someone who’s DNA repair process is hindered (unless they are addressing Methylation). However having said that, if there are many factors involved in the damage and not just the DNA, like inflammation adding to the problem etc, IMO this is where some things even other than Methylation supplements could likely help (In the case of my own Floxing where joints were falling apart for example, it was VERY noticeable the days I was away from home and not taking my usual supplements as things would always be worse, I was trying to at least ‘keep up with the damage’)

So another potential reason Methylation can be critical to healing here, because when it is inefficient/impaired, so is the DNA repair process. The more damage someone has, the more bad DNA gets churned out each time instead of good DNA, slowing and even preventing healing in some cases if the body is overwhelmed and not able to keep up.

——-

Then there is the entire Detoxification aspect of FQ Toxicity and Methylation, which detox alone in my opinion is extremely important and again deserves its own article. I will keep this section relatively short though, bottom line the body stores toxins, Cipro is a very nasty toxin, it does a lot of oxidative and other damage like DNA damage. Fluorine is attached to the rest of the Cipro drug and has been cited to “mobilize” from body stores through exercise and other detoxification stimulating methods. If someone’s Methylation is impaired, their Glutathione synthesis and Detoxification ability can be impaired too, so instead of purging these toxins in an efficient manner probably like those that do not end up “Floxed”, much of it can stay stored and can occasionally circulate and do more damage, and then can be redistributed (reabsorbed) again instead of being excreted by the body, keeping someone sick for a long time or possibly even indefinitely. (stresses the importance of avoiding as many other toxins as possible as well)

http://mthfrliving.com/health-conditions/glutathione/
This is a good little article with some great links in it and talks about the importance of Glutathoine, disease, the Genetic tie-in, and more. Here’s just one quote, “As Dr. Jacob Teitelbaum explains, your body needs ATP and NADPH (which requires TPP) to make glutathione. These building blocks may be low in people who have illnesses like chronic fatigue and immune dysfunction. It becomes a vicious cycle as excessive glutathione depletion causes mitochondrial dysfunction, low triphosphate and ATP which leads to chemical toxicity and medication sensitivity.”

http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/treating-chronic-fatigue-syndrome-mecfs-glutathione-and-the-methylation-cycle/a-simplified-treatment-approach-based-on-the-glutathione-depletion-methylation-cycle-block-pathogenesis-hypothesis-for-chronic-fatigue-syndrome-cfs-by-rich-van-konynenburg-ph-d One more (long) link here from the late Dr. Konynenburg, talking about Glutathione, Methylation and more, how “his theory” started on why CFS is tied to Methylation issues, and about how he developed his own protocol for people, one that is still being used today by people in this forum linked. One quote, “Two of the most significant effects of a methylation cycle block are that neither the immune system nor the detox system can operate properly. If the methylation cycle remains blocked for an extended period of time, infections and toxins can be expected to build up in the body.”

——-

So I talked about DNA repair before, now let’s look a little closer at actual DNA replication, and how it relates to repair, and to FQ Toxicity.

One of the most important aspects of the Quins, and why they are so effective against bad bacteria, is that they are designed to inhibit the DNA replication process of the bacterial cells, thus damaging the bacterial cells’ ability to reproduce. Here is just one study on this, I can’t remember how many others there are but I imagine there are a decent amount on this and recall reading at least a few in the past: http://jac.oxfordjournals.org/content/51/suppl_1/29.full.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1762815/ This is not about Floxing, but an interesting study on how quote “unequivocally, mtDNA mutations are an important cause of genetic disease”

The problem with this mechanism as we know, is this doesn’t just happen with the “bad” cells/bacteria, in typical Chemo-like fashion it ends up damaging the good cells/bacteria too. So that is the bad news.

The potential good news again, is Methylation can possibly come to the rescue, IF that is one big factor holding someone back. Here is one good excerpt from a paper on this, one why that can happen:

“The Importance of the Methylation Pathway – New cell synthesis and repair

Mutations in the methylation pathway can cripple the ability of the body to make the building blocks (purines and pyrimidines) needed for new DNA and RNA synthesis. A reduced capacity for new DNA and RNA synthesis means that any new cell synthesis is impaired. For an organism to live, it must create new cells as fast as cells die. This requires that the body make millions of cells every minute, relying on DNA and RNA synthesis. A reduced synthesis capacity due to methylation cycle mutations is a particular issue for cells that already have difficulties meeting their needs for DNA and RNA synthesis under normal conditions.

Adding a significant methylation issue to the cell synthesis makes it nearly impossible to recover from damage or stress on these tissues. Stress increases the need for nucleotides to overcome negative effects of hormones released during stressful conditions. Cell repair after injury increases the need for nucleotides. In particular, the nervous system has the highest concentration of RNA in the body, and therefore has the highest requirement of methylation need.”

So my summary to this and apply it to a Floxie:

FQ’s damage a cell’s ability to reproduce. Genetic Mutations in the Methylation Pathway can cripple the cell’s ability to reproduce. What do you get when you add these things together? A DISASTER.

————–

Now add up all the above, and then start considering some of the other aspects I never even went into like Gut Health, Inflammation, Energy Production and more, and hopefully you see why I think this is so critical.

So in having said all this, what can someone do about it? Someone can have their Genetics tested, like through a service called 23andme (note there are 11 Methylation SNP’s missing from the test Amy Yasko does, and a bunch included she does not test the better value by far is the 23andme test, it is a shame those 11 are missing but 23andme does included the majority of the most important ones currently). With this test, someone can then do some of the reports linked below (I think the MTHFRsupport one is said to be the best by most people, they all have their advantages though, like free in some cases etc) which help take the raw Genetic Data from 23andme and group things together on a report (like for Methylation). Here are some of the most popular options:

I believe this one is considered of the best, I think it is currently $30
http://mthfrsupport.com/order-reports/

This one is Amy Yasko’s own website, and I think is free, I would also recommend this one:
https://www.knowyourgenetics.com/

Here is a link to another one “Live Wello” and some ideas on what else to do with it, it is $20, and is similar to the mthfrsupport one, both are good I think mthfr one is a touch better:
http://resqua.com/100005927200207/tips-on-sharing-your-23andme-gene-report-with-your-doctor

Here is one more thread I have saved with many people discussing options/ideas:
http://forums.phoenixrising.me/index.php?threads/is-23andme-still-worth-it.29424/

There is also Genetic Genie, it might be free or cheap not sure, I don’t think considered one of the better ones but might still be worth doing, not sure
http://geneticgenie.org/

Once someone has these reports, they can then consult a Doctor who has studied the Methylation Cycle and determine if they are having problems, and what they can do about it.

—————————-

*** IMPORTANT NOTE *** – There are a couple dangers here, especially for someone already damaged like a Floxie. If someone has a “stalled” Methylation Cycle, and they jump start it too fast the body can dump a bunch of stored toxins all at once and overwhelm the system in a big way. There are sadly MANY reports of this happening out there, in the Autism forums, CFS forums and other places, it even happened here in this forum, and these reports are only the people that actually realized what happened too, I reckon many many instances go unreported. One way this happens is when someone has significant hindrances due to MTHFR SNP’s they have, which are fairly common. What happens here is the body now has trouble processing Folic Acid into an “active” (usable) form of Folate, which is greatly needed for the Methylation Cycle to fully function, and in some people this can be a huge factor that impairs the whole cycle. So why not just take active Folate then? Ah yes, this is exactly where people get into trouble, either through self diagnosis and treatment or worse they trusted a Doctor or Advisor who told them, “just take 400mcg of active Folate and you’ll be feeling better in no time” (more than one ‘prominent’ Doctor even recommends a dose that high to start). Oh they feel good alright, sometimes for a day, maybe even a week, then many get hit by a freight train, and it can take a VERY long time to recover from, Rene from this website took a full year to recover from this.

So anyone who suggests to “just take active Folate”, is someone to avoid, and even more so if the dose is above 200mcg to start IMO. Moreover though, there is MUCH more to consider here before ever taking Folate. Vitamin B12 is another very important nutrient needed in Methylation, and some people find they are too low in this Vitamin also, some are even too high, and some people have bad reactions to some types of B12 as well like Methylcobalamin for example. The reasons here lead into the next important point, there is MUCH more to Methylation than MTHFR, Dr. Amy Yasko has outlined roughly 25 other important Genetic SNP’s that all play a part in the Cycle. Her focus is somewhat on Autism and thus her approach to treatment is on the cautious side IMO , however to me it does not undermine the importance she stresses on why some other important things in the body and Meth Cycle need to be addressed before someone ever adds active Folate, and to me they definitely apply to a Floxie here. This is a whole other in-depth topic beyond the scope of this article, however I will give one or two small examples. The Gaba/Glutamate balance is very important in Autism, Dr. Amy warns that this needs to be addressed early on in treatment or issues can be exasperated, many Floxies also have this balance disturbed due to Gaba receptor damage, so to me this is big one. For another, “CBS” is an important Methylation Genetic SNP discussed by Dr. Amy, it is an “upregulation” in the Methylation Cycle, that causes some undesired effects, if you start kick-starting the cycle more before addressing CBS you once again exasperate this issue. This all starts to get very complicated, for people that want to learn more I highly recommend downloading Dr. Amy’s 247 page book here (remarkably free!) and note the title is very misleading, this is mostly about the Methylation Cycle: http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf

One more note here, as you can start to see from this section, much like Floxing itself, there is no “One size fits all”. Everyone has different Genetic variations, and only through testing and proper educated analysis can someone come up with a meaningful treatment plan to address their own personal shortcomings taking all the important SNP’s, and then their other many important personal factors into account.

———————

In closing, I just want to say that though many suffering people out there are finding levels of success through Methylation supplementation, and to me it looks promising for some Floxies which I hope I outlined why; it takes a good amount of dedication and time, and right now there seems to be very limited reports out there on Floxies getting treated for this. So I’m not making any promises with all this info, its not a quick fix, and I’m not suggesting everyone run out and get their Genetics tested necessarily (even though I generally think it is awesome important info to have on yourself). However, I do hope the many points made throughout the article do get some of you thinking about the real possibility here, that Methylation could be a key factor behind why some Floxies are having trouble healing.

Good luck Floxie Friends. I really do hope, that this gives some hope to some of you out there, especially those Severely Floxed people who I think this is going to apply to even more so, and who really need that hope, and potential help, more than ever. My heart goes out to each and every Floxie out there. God Bless you all.

Thank you, as always, Jason! Those of you who follow the comments on this site know how much time, effort, dedication, and insight Jason puts into his posts. He does it all to help us – what a rockstar! 🙂

 

Last, but not least, Nancy wrote this in a comment:

I suspect some of you know of or have heard of Shawn Bean and Jess Armine over at Bio-Individualized Medicine since they tend to treat a lot of folks who have been floxed and/or who have chronic disease. I believe that the folks at the MTHFR team looked at the genetic tests (23 & Me) of 38 different floxies using Sterling Hill’s interpretative software and discovered that almost every floxie (in the group of 38 they examined) has one out of these three SOD mutations:

rs2758331

rs2855262 and/or rs4880

I thought this information would be of interest, particularly since the topic of SOD came up during this podcast.

 

I don’t know about you, but I find all of this to be quite daunting. I have no doubt that genetics and methylation are big parts of the FQ toxicity puzzle, but it’s still, well, daunting. At the same time though, it’s interesting and figuring the floxing puzzle out is exciting and valuable. I hope that those of you who are interested in this path find some answers either through this post or through the links in the post! Whether you find it interesting or not, I hope that it leads you toward a path of healing.

Please be cautious when trying to treat methylation problems. Again, it is something that should be done under the supervision of a professional (a doctor or naturopath or other expert).

Please also remember that your genes are not your destiny, and that people with all sorts of genetic mutations have thrived for all of human history. Lifestyle and epigenetics matter, and you are not, by any means, doomed.

 

 

flu tox get help you need banner click lisa

I Heart The Floxie Community

DiegoMelanieJose

Diego, Melanie and Jose

Diego posted the above picture with the note, “Sometimes in life you come in contact with people whom God puts in your path! Although it was unfortunate that our paths crossed due to being affected by the same type of antibiotics we have supported and encouraged each other! Building our lives back to complete health! Thanks for ur friendship guys!”

Isn’t that lovely and awesome?

Diego also wrote:

There is something definitely powerful in uniting yourself with others who have a drive and determination to get better. This weekend I had the privilege of meeting other individuals who were affected by fluoroquinolones and we talked about our symptoms of course. However, there was conversation about our dreams, goals, and fire to keep pressing through this pain. I felt empowered to keep fighting and felt so much peace about knowing that we will all recover. We shared our remedies and gave each other tips about getting better. Our lives are definitely forever changed. I choose to believe that it will be changed for the better. Hang in there we will OVERCOME this!!! Now, I am blessed to call Jose and Melanie my friends. I can’t wait to meet more people affected by these antibiotics. Keep fighting, keep pressing, keep believing, YOU ARE WORTH THE FIGHT!

<3!!!!!

None of us would have asked to become a floxie. None of us would have asked for the painful peripheral neuropathy, the torn tendons, the chronic fatigue, the brain fog, the loss of money and relationships, or, really, any of it. But the awful did happen. It’s unfortunate, and if we could turn back time and re-do things, I think that most us never would have taken those drugs. But if we turned back time, and were never floxed, we never would have gained the friendships and community that many of us have as a result of banding together with other floxies. And since we can’t turn back time, we may as well appreciate the friends that have come into our lives because we are part of the floxie community.

As the wonderful admins of The Fluoroquinolone Toxicity Group (4,600+ people – wow!) always say to new members:

welcome to a group that no one wanted to join! Actually, this is the best group of people you will ever meet but the reason we’re here really sucks. The friendly folks here understand what you are going through and really want to help, whether you are a victim of fluoroquinolone toxicity, or a loved one who is taking care of one.

Indeed–The Fluoroquinolone Toxicity Group is full of friendly, thoughtful, wonderful people! People in the group spend hundreds of hours helping each other, advocating for each other, supporting each other, giving information to each other, and more. Floxies spend time and energy supporting friends who they’ve never met, who would be strangers if it weren’t for the unfortunate connection of being mutually poisoned, through some of the worst times in their lives. The generosity and caring of those in the community truly is amazing. Thank you to everyone who is part of this amazing community!

Floxie Hope also has a community of people who help, support and nurture each other. There are more than 15,000 comments on FloxieHope.com as a whole, and 10,000 on the home page. The thoughtful comments that reflect generosity, caring, knowledge, and a desire to help others, are beautiful and greatly appreciated! THANK YOU to all my wonderful friends who have made this site into a community. I am humbled by your generosity and grateful for your friendship!

I’ve had the opportunity to meet some floxie friends in person. Here is a picture of me with Suzanne:

SuzanneLisa

It is amazing beyond words to connect with someone who really understands what you’re going through, and what you’ve been through. Fluoroquinolone toxicity is so strange, and so unintuitive, that it’s really difficult for those who haven’t been through it to understand. Fellow floxies understand. They “get it” without struggle. It’s wonderful to have friends who understand and empathize with you.

Empathy, friendship, connections, community and understanding – they’re what life is all about. I am thankful to everyone in the floxie community for their friendship and for the wonderful community that has been formed! You are all greatly appreciated!

 

flu tox get help you need banner click lisa

Loss of Faith in the Healthcare System

After getting “floxed,” I lost a lot of faith in the medical system.

I used to think that the medical system, as a whole, was trustworthy. I knew that the system was imperfect, but I thought that most of the problems had to do with cost and insurance, and that drugs generally were well understood and regulated, and that they did more good than harm.

Getting hurt by a prescription drug, an antibiotic no less, shook my faith in the medical system. Researching fluoroquinolones and other drugs made me realize how little anyone knows about how drugs work, and why they sometimes don’t work, and I further lost faith in the system.

As I witnessed a prescription drug causing people to be chronically ill, I started to wonder if many of the chronic illnesses (autoimmune diseases, neurodegenerative diseases, mysterious diseases like ME/CFS and fibromyalgia, diabetes, etc.) were due to the cellular destruction inflicted by prescription drugs. Many prescription drugs, not just fluoroquinolones, wreak havoc on the microbiome, mitochondria, neurotransmitters, and more–and problems with those systems have been linked to many of the chronic diseases of modernity.

I saw that the only thing that the FDA is inclined to do about adverse drug reactions is to increase the size of the warning labels–as if anyone reads the warning labels and as if this is actually a solution. I noted that thousands of people are killed by prescription drugs each year, and I lost faith in the FDA’s ability to regulate the pharmaceutical industry.

The 21st Century Cures Act, a piece of legislation that is going through Congress right now, is a thinly-veiled give-away to the pharmaceutical industry that decreases drug regulation at a time when it needs to be increased. Congress is not only failing to recognize the problem of prescription drugs hurting and killing people, it is actively encouraging the pharmaceutical industry to do more of the same. I didn’t have a lot of faith in the U.S. Congress before I got “floxed,” but I have even less faith in them now. (If you want to read my take on the 21st Century Cures Act, I wrote about it in the post, “The 21st Century Cures Act” Is On Its Way – Here’s Why You Haven’t Heard About It that was published on Collective Evolution on 7/7/15.)

I wonder how many other people there are like me–who no longer trust the medical system after being hurt by it. I suspect that most (but certainly not all) people who get hurt by prescription drugs no longer view the system as a whole as trustworthy or credible.

Once a system loses credibility, many people opt out of it and seek alternatives. If the healthcare system loses credibility in the minds of most people, and most people opt out of it, it will, eventually, collapse. I have no idea when this will happen, or even if there are enough people who think like me that it will happen. We shall see.

Unfortunately, a lot of people are currently being hurt by adverse drug reactions, and more people will have to get hurt for a crash to happen. I don’t hope for a crash. I hope that the regulators (the FDA) start doing their jobs and that the pharmaceutical companies start upholding their credos and start having morals. I wish I saw that happening, but I don’t. Maybe we will reach a tipping point where it will happen–to be determined.

The healthcare industry is immense, and it is much more complicated than the sub-prime housing market that crashed in 2007-2008. However, I see some similarities between the sub-prime housing market crash and my assertion that the healthcare industry is going to crash (at some point–maybe). Those similarities are described in the post, The Healthcare System Collapse: Lessons from the Housing Market Crash and “The Big Short” that was published on Hormones Matter yesterday – 2/4/16. (This post started as an intro to the Hormones Matter post, and it just morphed into its own post. Please read and share The Healthcare System Collapse: Lessons from the Housing Market Crash and “The Big Short” – Thanks!)

I foresee a crash in the medical system because I’ve lost faith in it. Maybe I’m wrong and other people will respond differently from how I have after getting hurt by the medical system. Maybe I really am “rare” and other people won’t get hurt by the medical system. Or, maybe drugs will get more and more dangerous because of lack of regulation, and more and more people will get hurt by pharmaceuticals and they will lose faith in the system just like I did, and the demise of the system as we know it will arrive. To be determined, and we shall see. Hopefully I’m just being too pessimistic and the FDA will start doing a better job at protecting people from dangerous drugs. I really do hope that occurs.

flu tox get help you need banner click lisa

Meditation Retreat

I spent last weekend at the Shambhala Mountain Center doing a meditation retreat. It was a lovely get-away and I recommend it to anyone who is interested in that sort of thing.

As those who have read my story know, meditation was a key part of my healing process. Meditation helped me to heal from both the mental and physical aspects of fluoroquinolone toxicity. It helped to relieve my anxiety, and stopping the cycle of anxiety was necessary for me to heal. When I meditate my digestion is better, and I can even feel my GI tract operate more efficiently. (Maybe that’s just a feeling and not objective reality, but it is possible that meditation is helping to tone my vagus nerve and support my autonomic nervous system, and thus actually improving my digestion.) I sleep better when I meditate. My concentration and creativity improve when I meditate. Meditation also helped me to emotionally and spiritually come to terms with getting sick. It helped me recognize my strength and resilience so that I could get through the fluoroquinolone toxicity journey.

Meditation is simultaneously simple and difficult. On the surface, it’s just sitting and being. But when you do it, it’s actually quite difficult. It’s difficult to just BE, without the distractions that are constantly bombarding us.

The retreat that I just returned from focused on loving kindness. We all need loving kindness in our lives. Floxies are especially in need of loving kindness as many things that they value–health, relationships, a pain-free life, sleep, money, etc.–are stolen from them by fluoroquinolone toxicity. When those things disappear (or seem to disappear), it is easy to let shame, fear, anger and meanness build up. Meditation helps to dissipate shame, fear, anger and meanness–and focuses energy back on patience, love, kindness, forgiveness, etc.

My favorite advice from the retreat included:

  • If gentleness and loving kindness don’t work, try more gentleness and loving kindness.
  • Try not to be too focused on / attached to outcomes.
  • There is grace in every moment–even the horrible ones.

They’re important, and valuable, things to remember.

For those who aren’t able to do a retreat away from home, The Urban Monk is offering a free 7-day Reboot Program.

UrbanMonk7DayReboot

According to The Urban Monk, Pedram Shojai,

Over the next 7 days you will:

  • Get more energy from your food and burn fat all day…
  • Generate 10X more power in your body…
  • Create a ‘force field’ shielding you from stress…
  • Learn to stop time and drink from infinity…
  • Detox your body and soothe away anxiety with high quality sleep…
  • Tap into an unlimited source of hidden energy available to each one of us…
  • Gain extra clarity, focus and powerful intention…

Hopefully it can help you to heal physically, mentally, emotionally and spiritually from aspects of fluoroquinolone toxicity too.

I recommend meditation to all my Floxie friends. If you can go on a retreat, please do. If you can do the 7-day Reboot, it’s a great place to start too.

I can’t guarantee healing from meditation, but it’s certainly a good thing to try.

 

flu tox get help you need banner click lisa

In Memory of Dr. Jay S. Cohen, M.D.

jaybookcasesm

I am saddened to report that Dr. Jay S. Cohen, M.D. passed away on December 6, 2015.

Dr. Cohen tirelessly advocated for recognition of medication adverse reactions, and specifically focused much of his work on bringing to light the many dangers of fluoroquinolone antibiotics.

Dr. Cohen’s articles about fluoroquinolone toxicity included:

  • New Warnings for Cipro, Levaquin, and other Quinolone Antibiotics
  • Peripheral neuropathy associated with fluoroquinolones
  • Reactions to Cipro, Levaquin, and Other Fluoroquinolone Antibiotics
  • Fluoroquinolone Toxicity Syndrome: A Letter to the Senate Committee on Health, Education & Labor
  • New Warnings for Cipro, Levaquin, and other Quinolone Antibiotics
  • Severe Reactions to Levaquin, Cipro and Other Fluoroquinolone Antibiotics: Are Doctors in Denial?

Many more articles by Dr. Jay S. Cohen can be found on his web site, www.medicationsense.com.

In addition to many articles, Dr. Cohen also published several books including, “How We Can Halt The Cipro & Levaquin Catastrophe: The Worst Medication Disaster In U.S. History.”

Dr. Cohen also consulted with and helped hundreds of people who had been injured by fluoroquinolone antibiotics. He was a powerful advocate and a friend to the community and many people in it. He is missed.

From the Jay S. Cohen M.D. Foundation Web Site:

Jay S. Cohen, M.D., was a nationally respected expert on prescription medications and natural therapies. Dr. Cohen earned his medical degree at Temple University in 1971. After completing his internship, he practiced general medicine and conducted ground-breaking research at UCLA in acupuncture and pain. In 1974, he undertook a residency in psychiatry and psychopharmacology at UCSD, where he was an Adjunct Associate Professor of Psychiatry. He was Chairman of the Medical Advisory Committee of the Erythromelalgia Association, and a Fellow of the American College of Nutrition.

Dr. Cohen’s interest in pharmacology led to independent research on the causes of medication side-effects that result in more than 100,000 deaths and 2 million hospitalizations each year. He noted that a substantial number of people are medication-sensitive, and, starting in 1996, published his findings in eight books and in leading medical journals, as well as articles in publications such as Newsweek, Bottom Line Health, and Life Extension Magazine. His work was featured in The New York Times, The Washington Post, Consumer Reports, Wall Street Journal, Modern Maturity, Women?s Day, and many other national magazines and newspapers. His book, Over Dose: The Case Against The Drug Companies (Tarcher/Putnam, 2001), was favorably reviewed by Publishers Weekly, Library Journal, and the The Journal of the American Medical Association.

In the course of his professional career, Dr. Cohen was featured on more than 100 radio programs across America, including NPR. He presented his findings at conferences of patients, doctors, drug industry executives, and attorneys. During the post-9/11 anthrax scare, his journal article on severe reactions to the class of antibiotics that includes Cipro and Levaquin, triggered a national debate and prompted the U.S. Center of Disease Control to withdraw its recommendation for their use in anthrax-exposure cases.

In 2002, Dr. Cohen was the keynote speaker at the Annual Science Day of the US. Food and Drug Administration’s Clinical Pharmacology Division. He debated top FDA officials on drug safety at several conferences, including those hosted by the American Society for Clinical Pharmacology and Therapeutics, and the Drug Information Association.

Dr. Cohen made his home in Del Mar, CA for over 40 years. He was an avid lover of learning, dogs and the beauty of Del Mar. He is survived by his son Rory Cohen and daughter-in-law Alana Cohen, and a nephew, Hal Cohen.

I had the opportunity to speak with Dr. Jay S. Cohen just a few months before he passed. He was thoughtful, generous and passionate about helping those who have been hurt by fluoroquinolones. He was a wonderful advocate whose work is greatly appreciated by many.

Condolences to Dr. Cohen’s family, friends and loved ones have been expressed extensively in the fluoroquinolone affected community. I echo those condolences. The fluoroquinolone harmed community, and the world, lost a brave and beloved man when Dr. Cohen passed.

He is appreciated and missed.

 

flu tox get help you need banner click lisa

 

Organofluorine Accumulation

I highly recommend that everyone read these two articles:

  1. The New York Times Magazine, “The Lawyer Who Became DuPont’s Worst Nightmare
  2. The Huffington Post, “Welcome to Beautiful Parkersburg, West Virginia: Home to one of the most brazen, deadly corporate gambits in U.S. history

They’re both brilliant exposés about DuPont’s dumping of perfluorooctanoic acid (PFOA) into the groundwater and land of Parkersburg, West Virginia. They reveal corporate malfeasance, regulator ineptitude, health risks, and environmental degradation that everyone should be aware of.

I also wrote an article that was published in Collective Evolution on the topic of organofluorine compounds like PFOA and how they affect our health – “Fluorine-Based Toxins Accumulate In The Body & Cause Multiple Health Problems.” You should read (and share) it too. 🙂

The articles listed above aren’t directly about fluoroquinolones. However, I suspect that they are connected to fluoroquinolones, and fluoroquinolone toxicity.

Both the chemical noted in the articles, perfluorooctanoic acid (PFOA, aka C8), and fluoroquinolones, are organofluorine compounds–meaning that they are composed of a carbon-fluorine bond. That fact alone does not mean that fluoroquinolones have the same consequences as perfluorooctanoic acid, but it does mean that similarities should be examined.

Organofluorine Bioaccumulation

The most worrisome aspect of perfluorinated compounds (PFCs) – man-made types of organofluorine compounds, like PFOA, that are used in many non-stick consumer products including cookwear and carpeting – is that they, essentially, never biodegrade. They stay in our bodies, and the environment, indefinitely, because there are no mechanisms in our bodies (or in the environment) to break them down.

Per the article, “Human detoxification of perfluorinated compounds:”

“it appears that most PFCs may be re-absorbed and returned to the liver through the enterohepatic circulation where the cycle of biliary excretion and re-absorption recommences repeatedly. In addition, there is increasing evidence in the literature that persistence in the body may also result from impaired renal excretion of some PFCs due to renal tubular re-absorption mediated through organic anion transporters.”

Additionally, PFCs accumulate in the environment and work their way up the food chain. They get absorbed into plants, then absorbed by the animals that eat the plants, then absorbed by the animals that eat those animals, until they are highly concentrated in the animals at the top of the food chain (us).

Do fluoroquinolones, or fluoroquinolone metabolites (specifically organofluorine metabolites), also stay in the body indefinitely–getting recycled and re-absorbed through enterohepatic circulation? Do they bioaccumulate indefinitely like PFCs?

Tolerance Thresholds for Fluoroquinolones

If fluoroquinolones (or their metabolites) bioaccumulate, it would make sense of some aspects of fluoroquinolone toxicity.

First, there appears to be a tolerance threshold for fluoroquinolones. People can tolerate fluoroquinolones well until they reach their personal tolerance threshold, at which time they get “floxed.” Some people are devastated by a single prescription of fluoroquinolones, while other people can tolerate several prescriptions before they get obliterated by fluoroquinolone toxicity. Personally, I was fine after my first exposure to ciprofloxacin in 2010–it was only after my second exposure in 2011 that I had an adverse reaction. (Of course, it should be noted that some people never reach their tolerance threshold and never experience getting “floxed.”)

Likewise, there appears to be a tolerance threshold for PFC exposure. People don’t get cancer, or colitis, or have children with birth-defects, after a single time cooking with a Teflon pan. Exposure to PFCs at high doses is necessary for their ill effects to become apparent. However, because of bioaccumulation, repeated small exposures (say, a decade of cooking in non-stick pans while living in a house with PFC-coated carpets) can lead to levels of PFCs in one’s body that are high, and can lead to negative health outcomes. That’s what makes the bioaccumulation situation so frightening–we all have PFCs in our blood* and every time we’re exposed to more, the toxic burden on our body increases.

Could our tolerance threshold for fluoroquinolones not only be a tolerance threshold for FQs, but also our tolerance threshold for all sources of organofluorine compounds (fluorinated pharmaceuticals, non-stick consumer goods, pesticides, etc.)?

Could the people who get “floxed” be the people with already high levels of PFCs who get pushed over the toxic edge by fluoroquinolones? Or, are the people who have adverse reactions to fluoroquinolones those who are particularly bad at metabolizing and eliminating organofluorine compounds / really good at holding onto and recirculating those toxins? Certainly, there must be some factors that differentiate those who suffer from adverse reactions to fluoroquinolones from those who don’t. There are any number of potential environmental and genetic factors, and maybe bioaccumulation of organofluorine compounds is a factor that should be considered (levels of PFCs and bioaccumulation may be due to a combination of both environmental and genetic factors).

The notion of a tolerance threshold for fluoroquinolones is reinforced by the cross-reactivity between fluoroquinolones. Once a person has an adverse reaction to a fluoroquinolone, all fluoroquinolones (not only the one they reacted badly to) are contraindicated for that person. This cross-reactivity may, or may not, have to do with an accumulation of organofluorine compounds or their metabolites (please keep in mind that there are other mechanisms for the cross-reactivity phenomenon).

Though bioaccumulation of toxins (including, but not limited to organofluorine compounds like fluoroquinolones and PFCs) is a problem that needs examination, I don’t think that the situation is hopeless for those who carry a high burden of toxins. Lifestyle changes may be necessary to avoid toxins and pollutants, and our natural cleansing organs may need to be supported a bit (through diet, supplements, etc.), but there is plenty of evidence that healing from fluoroquinolone toxicity is possible, and despite all the pollution in Parkersburg, WV, there are still some healthy people there. Bioaccumulation of toxins is frightening, for sure, but though our bodies are not well equipped to deal with organofluorine compounds, we do have detoxification and healing mechanisms that are helpful.

Years of Poisoning and Pollution

DuPont first started using PFOA in 1951. Internal documents reveal that they knew that PFOA was toxic at that time, yet they still used it in consumer products and disposed of it improperly. It wasn’t until 2011 that independent scientists, “began to release their findings: there was a ‘probable link’ between PFOA and kidney cancer, testicular cancer, thyroid disease, high cholesterol, pre-eclampsia and ulcerative colitis.” It wasn’t until 2016 that major news organizations like The New York Times and The Huffington Post began to publish articles about PFOA. Additionally, if you read “The Lawyer Who Became DuPont’s Worst Nightmare” you will note just how many things fell into place for the news of the toxicity of PFOA to reach the public.

How long will it take for fluoroquinolone-injury lawsuits to prevail, for studies examining whether or not fluoroquinolone-use is connected to the many diseases of modernity, and for major investigative journalism pieces to be completed? How long will it take for fluoroquinolone toxicity to reach public consciousness and for systems to change? As far as I know, no one is even looking at whether or not toxic fluorine metabolites are formed by fluoroquinolones, or whether or not they bioaccumulate like PFCs. Though there are hundreds of articles about the harm that fluoroquinolones do to cells (especially to mitochondria – BTW organofluorine metabolites like fluoroacetate and fluorocitrate wreak havoc on mitochondria. Unfluorinated quinolones may too though, so keep that in mind.), the only researcher who I know of who is even making steps toward connecting fluoroquinolone-use to the chronic, multi-symptom diseases of modernity is Dr. Golomb with The Fluoroquinolone Effects Study. I hope that more researchers study the many aspects of fluoroquinolone toxicity (mitochondria damage, mineral depletion, neurotransmitter dis-regulation, microbiome damage, thyroid damage, endocrine disruption, organofluorine metabolite accumulation, etc.) and that the questions raised in this post, and throughout this site, are answered.

Maybe we truly are canaries in the coalmine–warning everyone about the dangers, not only of fluoroquinolones, but of all fluorinated drugs, and also for the accumulated organofluorine compounds in our environment. It’s certainly a hypothesis that should be looked at. I would hate for 65 years of organofluorine compound metabolite accumulation to occur because of fluorinated drug use before an examination even takes place. After all, the toxicity of other organofluorine compounds is well-documented, so I’m not sure why fluorinated drugs are assumed to be safe. Fluoroquinolones certainly aren’t safe, and they need to be researched much more thoroughly.

Conclusions

I have neither the resources nor the expertise to know whether or not adverse reactions to fluorinated drugs, like fluoroquinolones, are related to the buildup of PFCs in our bodies and our environment. There are some aspects of fluoroquinolone toxicity that make more sense when it is noted that bioaccumulation is possible. Given that fluoroquinolones have a fluorine-carbon bond, and that other organofluorine compounds have been shown to bioaccumulate and wreak havoc on health, I think it’s something that should be explored.

Regardless of whether or not fluoroquinolones contribute to organofluorine load, we should all be concerned about PFCs in our bodies and our environment. Bioaccumulation of PFCs is going to make the problem worse and worse as time goes on. As chemical producing corporations like DuPont blatantly lie as they shift from one organofluorine pollutant to another, claiming that the current one is safer than the proven-toxic past ones–even though it’s not, more and more PFCs will accumulate. The potential detrimental effects of accumulated PFCs to our personal and collective health are yet to be determined. I suspect that health outcomes for humans, and all the other animals on the planet that are exposed to these compounds, will get worse and worse as time goes on and as they bioaccumulate. Perhaps I’m a pessimist though, and the consequences of organofluorine compounds in our environment won’t be as dire as I fear. We, or our children or grandchildren, shall see. Surely, future people will look back at this time and think that we are all fools for letting unregulated, greedy, corporate giants like DuPont release permanent, harmful pollutants into the world simply so they could make millions on non-stick pans and stain-resistant carpets. What a sad, sad, state of the world.

 

* “C8 was being detected everywhere—produce and beef in American grocery stores, polar bears in the Arctic, children in the remote Faeroe Islands. One analysis of blood banks from around the world showed that nearly all of the blood contained C8. The lone exception was a set of archived samples that had been collected from Korean War veterans before 1952.” (Source)

 

flu tox get help you need banner click lisa

Is Fluoroquinolone Toxicity Quinolone Toxicity or Fluorine Toxicity?

As should be obvious from their name, FLUOROquinolones are fluorinated drugs.

A little history for you: Nalidixic Acid is the backbone of all fluoroquinolones. It was discovered by George Lesher in 1962, and it started to be used as an antibiotic in 1967. Nalidixic acid, and the first-generation quinolones that were derived from it, were not widely used because they lacked bioavailability and were associated with the rapid development of bacterial resistance (1). To increase bioavailability, a fluorine atom was added to the nalidixic acid backbone at position 6, bonded to carbon (2 and 3). This increased bioavailability of the quinolones greatly, and their use increased exponentially (more than 26 million prescriptions for fluoroquinolones were given out in 2011 alone).

In addition to increasing the bioavailability of fluoroquinolones, did the addition of the fluorine increase the toxicity of the fluoroquinolones?

How much of Fluoroquinolone Toxicity is due to the quinolone core and how much of it is due to the fluorine addition that, as it is intended, penetrates cells and increases the quinolone efficacy and potency? Is Fluoroquinolone Toxicity quinolone toxicity, or is it fluorine toxicity?

I’ve always been of the opinion that the quinolone core is toxic and that the fluorine just increases the bioavailability and toxicity of the quinolones, and that fluoroquinolone toxicity is quinolone toxicity, not fluorine toxicity. However, recently I’ve been reading about the effects of fluoride, and, more specifically, fluoro-organic metabolites like fluoracetate and fluorocitrate, and I have been considering the possibility that fluoroquinolone toxicity is a result of the addition of the fluorine atom to the quinolone core. I intend to explore the possibility that fluoroquinolones are metabolized into poisonous metabolites like fluoracetate and fluorocitrate in future posts. In this post, I’ll start the conversation by looking at some evidence that the quinolone core is the toxic part of fluoroquinolones, as well as some evidence that the fluorine is the main source of toxicity.

There is a lot of grey area in the question of whether fluoroquinolone toxicity is caused by the quinolone core, the fluorine attachment, or both. It is likely, in my opinion, that both are toxic. There are undoubtably complex feedback and feed-forward loops in our biochemistry that may make one increase the toxicity of the other too.

fluoroquinolone-lawsuit-banner-trulaw

Argument #1 – Quinolones were toxic before the fluorine was added.

Nalidixic acid and the first-generation quinolones that weren’t fluorinated, have serious and severe adverse effects. For example, Cinoxacin, a first-generation unfluorinated quinolone, has the following adverse-effects (4):

  • difficulty breathing
  • fever
  • increased sensitivity to the sun or ultraviolet light
  • irregular heartbeat, palpitations, or chest pain
  • joint, muscle, or tendon pain
  • nervousness, restlessness, anxiety
  • severe stomach or abdominal pain
  • severe or watery diarrhea
  • seizures (convulsions)
  • skin rash or itching
  • swelling of the face or neck
  • vomiting
  • diarrhea (loose stools)
  • difficulty sleeping
  • dizziness, drowsiness
  • headache
  • nausea
  • stomach upset

In a study of 1,118 patients who took Cinoxacin, it was found that many experienced the following (5):

Gastrointestinal: Nausea was reported most commonly and occurred in less than 3 in 100 patients. Other side effects, occurring less frequently (1 in 100), were anorexia, vomiting, abdominal cramps/pain, perverse taste, and diarrhea.

Central Nervous System: The most frequent side effects were headache and dizziness, reported by 1 in 100 patients. Other adverse reactions possibly related to Cinobac (cinoxacin) include insomnia, drowsiness, tingling sensation, perineal burning, photophobia, and tinnitus. These were reported by less than 1 in 100 patients.

Hypersensitivity: Rash, urticaria, pruritus, edema, angioedema, and eosinophilia were reported by less than 3 in 100 patients. Rare cases of anaphylactic reactions have been reported. Toxic epidermal necrolysis has been reported very rarely. Erythema multiforme and Stevens-Johnson syndrome have been reported with cinoxacin and other drugs in this class.

Hematologic: Rare reports of thrombocytopenia.

Though those aren’t comprehensive lists of fluoroquinolone toxicity symptoms, they’re pretty close. Even reviews of modern fluorinated fluoroquinolones rarely have more comprehensive lists of adverse-effects than the lists for Cinoxacin above.

Argument #2 – The fluorine increases the toxicity so much that it is largely responsible for fluoroquinolone toxicity.

From various publications:

“Fluorinated C-6 position was shown to contribute to an overall toxicity of the molecule and its CNS activity” (6).

“Fluoroquinolone antibiotics may cause tendon pain and rupture… The non-fluorinated quinolone nalidixic acid had lesser or no effects” (7).

“Although the etiology of fluoroquinolone-associated muscle disorders has yet to be fully elucidated, evidence supports a relationship with both latent myopathic disorders and the fluorine atom in fluoroquinolones… Further support for the hypothesis that fluorine may be the trigger for fluoroquinolone-associated myopathy comes from the fact that no adverse muscular events have been reported with unfluorinated quinolones” (8).

“The potential of this non-fluorinated series became clearer when two independent reports showed that non-fluorinated quinolones were consistently less genotoxic than their 6-fluorinated counterparts” (9).

Argument #3 – The fluorine is toxic, and fluoroquinolone toxicity is fluoride toxicity.

This post would be way too long if I went into detail about this argument, but I will note that the symptoms of fluoride toxicity are similar to the symptoms of fluoroquinolone toxicity. Fluoride toxicity is a multi-symptom, chronic illness that affects all systems in the body….. just like fluoroquinolone toxicity. There are people who have been exposed to other sources of fluoride who have very similar symptoms to those of people who have been “floxed.”

Conflicting Evidence

I suspect that the reason for the conflicting evidence presented above is that long-term studies of fluoroquinolones (and of other sources of fluorine/fluoride) have never been done–or, if they have been done, they have not been responded to appropriately, as there is no movement (that I’m aware of) to stop the fluorination of drugs, and the movements to stop the fluoridation of water constantly run up against obstacles including the accusation of being “conspiracy theorists.” In the short-term, and after limited exposure, many people (and lab rats) are fine. It is only after an accumulation of cellular damage occurs that a threshold is crossed, and multi-symptom, chronic illness results. In the post, The Fluoroquinolone Time Bomb – Answers in the Mitochondria, I go over the delayed reactions and tolerance thresholds that occur with fluoroquinolone adverse reactions. It should be noted that fluoride also accumulates in the body, there is a tolerance threshold for it, and fluorine metabolites damage mitochondria. In order to see the damage that is done by fluoroquinolones (and possibly other sources of fluoride like other fluorinated drugs, PFCs, and even fluoridated water) long-term studies need to be done. Studies that only examine a short exposure to fluoroquinolones, and that don’t look at adverse reactions that occur weeks, months, or even years after exposure to the drug has stopped, are not approaching these drugs appropriately. Short-term studies show that these drugs are less risky than they actually are in the long term, and/or after repeated exposure. Long-term studies are needed to show the real risks of fluoroquinolones.

Anecdotes

I recovered while drinking fluoridated water and using fluoridated toothpaste. I have never noticed any immediate ill effects from fluoride exposure.

However… some people have recovered from fluoroquinolone toxicity primarily through cutting all sources of fluoride from their lives. They have avoided fluorinated water for drinking, cooking/eating, and bathing, and have felt markedly better while avoiding fluoride. They notice that even small exposures to fluoride make them feel worse.

Nonconclusion

I honestly don’t know what to conclude. I think that both the quinolone core and the fluorine atom are dangerous. It’s undeniable that the fluorine makes the quinolone more powerful, and more dangerous. I am also starting to see that fluorine in itself can cause severe cellular damage. Fluorine is an undeniably reactive element that can bind to (and deplete) minerals, disrupt enzymatic reactions, and it may be wreaking havoc on those who exceed their tolerance for it.

BUT… the quinolone core is dangerous too. People can legitimately argue that there are many, many sources of fluorine in the world (20% of all prescription drugs are fluorinated, water and toothpaste are fluoridated, nonstick products like Teflon are fluorinated, air pollution has a lot of fluorine in it, etc.) and people who are exposed to those things don’t get “floxed.”

BUT… maybe we need to look beyond the people who are dealing with fluoroquinolone toxicity, and look at the bigger picture of multi-symptom, chronic, mysterious diseases. I’m honestly not sure if the many diseases of modernity that have increased along with both fluoroquinolone use and the increase in overall exposure to fluoride—like autoimmune diseases, neurodegenerative diseases, mysterious diseases like fibromyalgia and ME/CFS, mitochondrial diseases, autonomic nervous system diseases, autism, etc.–have anything to do with fluorine/fluoride exposure, or not. Studies, especially appropriately long-term studies, that examine the various sources of fluorine/fluoride, and their cumulative effects, haven’t been done. (Most people assume that things like this have been looked at thoroughly. Don’t assume that–they haven’t been.)

Action Plan

Whether we’re dealing with quinolone toxicity or fluorine toxicity, the result is mitochondrial damage and dysfunction, oxidative stress, mineral depletion, a disrupted microbiome, and more. Research on antioxidant supplementation has shown promising results for floxies, and for people dealing with the more recognized diseases of modernity. Mineral replacement is recommended whether cellular minerals are being displaced by the quinolone core or the fluorine. The healing tips noted in the stories on Floxie Hope, and the supplements and other protocols mentioned in The Fluoroquinolone Toxicity Solution, are helpful. Cutting fluoride exposure is also recommended by many “floxies,” and perhaps avoiding all sources of fluoride (fluoridated water, toothpaste, many supplements and pharmaceuticals contain fluorine, and nonstick products like teflon do as well) will be the key for healing for you. I know that avoiding fluoride and fluorine has helped others to heal.

Sources:

  1. The Canadian Journal of Infectious Diseases, “Safety of fluoroquinolones: An update
  2. Dartmouth, “Deconstructing Molecules: Cipro
  3. International Journal of Comprehensive Pharmacy, “SYNTHESIS OF NEW LEVOFLOXACIN DERIVATIVES AND THEIR BIOLOGICAL ACTIVITY
  4. University of Utah Health Care, “Cinoxacin capsules
  5. RxList, “Cinobac Side Effects Center
  6. German, NA, Design and synthesis of novel molecules for overcoming bacterial resistance to fluoroquinolones. The University of Iowa 2007, p. 16.
  7. Rheumatology, “Contrasting effects of fluoroquinolone antibiotics on the expression of the collagenases, matrix metalloproteinases (MMP)-1 and -13, in human tendon-derived cells
  8. Physical Medicine and Rehabilitation (PM & R) “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population
  9. Current Medicinal Chemistry, “Discovery, Structure-Activity Relationships and Unique Properties of Non- Fluorinated Quinolones (NFQs)

 

flu tox get help you need banner click lisa

Dear Epidemiologists – Please Take a Look at Fluoroquinolones

FQWallofPain

This paragraph, in a 2013 New Yorker article entitled The Big Sleep, caught my attention:

“In a recent paper in the online edition of the British Medical Journal, Daniel Kripke, a professor emeritus at the University of California San Diego School of Medicine, examined five years of electronic medical records collected by a health system in Pennsylvania. He compared more than ten thousand patients who had been prescribed a sleep medicine—most commonly Ambien—and more than twenty thousand patients who had not. After adjusting for age, gender, smoking habits, obesity, ethnicity, alcohol use, and a history of cancer, and after controlling, as much as possible, for other diseases and disorders, Kripke found that people who had taken sleeping pills were more than three times as likely to have died during the study period as those who had not. Those on higher doses of the drugs were more than five times as likely to have died.”

The drug featured in the article was a new sleeping pill called Suvorexant, and the quote is about Ambien, but it made me wonder–Can someone PLEASE do a similar epidemiological study for fluoroquinolones? I want to know how health outcomes are for those who take fluoroquinolones versus those who take other antibiotics.

The symptoms of fluoroquinolone toxicity are similar to the symptoms of autoimmune diseases like R.A., M.S., Lupus, scleroderma, and other autoimmune conditions–and several people have been diagnosed with those diseases after experiencing fluoroquinolone toxicity. Fluoroquinolone toxicity symptoms are also similar to those of fibromyalgia, M.E./C.F.S., P.O.T.S., and other “mysterious” diseases of modernity. Fluoroquinolone toxicity, like those diseases, features peripheral neuropathy and central nervous system disturbances (like brain-fog, intractable insomnia, etc.). Psychiatric disturbances have been commonly reported among those suffering from fluoroquinolone toxicity. Severe musculoskeletal problems among those taking fluoroquinolones have been reported (and actually studied). Frighteningly, some who have experienced fluoroquinolone toxicity have experienced symptoms of neurodegenerative diseases like A.L.S. and Parkinson’s.

The warning labels for fluoroquinolones are 43 pages long, and list many of the symptoms of fluoroquinolone toxicity. In the November 5, 2015 FDA meeting regarding fluoroquinolones, it was acknowledged that symptoms of fluoroquinolone toxicity are severe and that they resemble the symptoms of many diseases. Fluoroquinolones have also been noted as a source of permanent disability, and delayed adverse effects have been experience and documented. The FDA panel at the November 5th meeting noted that further studies of fluoroquinolones are needed.

YES, further studies are needed.

We need long-term studies that determine whether or not people who are given fluoroquinolones are more likely to be diagnosed with an autoimmune, neurodegenerative, psychiatric, or “mysterious” disease than those who don’t take fluoroquinolones.

I hope that someone takes a closer look at fluoroquinolones to see what the long-term health consequences of them are. Patients and physicians alike should know whether or not there are long-term consequences to taking a prescription drug–so they can adjust their actions accordingly.

Additional musings on this topic can be found in the December 14, 2015 post on Hormones Matter, “Dear Epidemiologists, Consider Fluoroquinolones.”

flu tox get help you need banner click lisa

 

Happy Holidays 2015

Happy Holidays, friends!

For those who celebrate Chanukkah, HAPPY CHANUKKAH!

For those who celebrate Christmas, MERRY CHRISTMAS!

And for those who just want to celebrate the solstice, HAPPY SOLSTICE!

I hope that each of you has a lovely holiday season, filled with love and joy! I hope that any pain you’re experiencing because of FQ toxicity is lessened by the warmth and love of family and friends.

Though I sincerely hope that your holidays are filled with joy and love, I know that the holidays can be difficult for many people–especially those dealing with mysterious, chronic illness (like fluoroquinolone toxicity).

It’s difficult enough to feel like your body is falling apart–it’s even rougher when you’re expected to decorate the house.

It’s difficult enough to have a mysterious illness that most medical professionals don’t understand–it’s even rougher when family members don’t understand.

It’s difficult enough to have lost your job and income because of your illness–it’s even rougher when you feel guilty about not being able to afford presents for your loved ones.

It’s difficult enough to deal with horrible food sensitivities–it’s even rougher when everyone thinks that your food sensitivities are made up and that you should just have a cookie.

It’s difficult enough to deal with fatigue and exhaustion–it’s even rougher when kids need your time, attention and energy.

The holidays can, without a doubt, be a time of struggle for those dealing with multi-symptom, mysterious illnesses like fluoroquinolone toxicity.

I hope that those who are dealing with pain, exhaustion, lack of acknowledgement, financial troubles, grief, loneliness, etc. this holiday season are able to find support, love and healing. If those aren’t possible, I hope that you just are able to get through the season not too terribly scathed.

I hope that the traditions of the season give you comfort and joy. I hope that sitting by a fire warms your bones, and that hot apple cider warms your tummy. I hope that you get and give presents that show you and your loved ones that you are, indeed, loved. I hope that you enjoy some delicious food. I hope that you feel loved and appreciated and that both lessen the pain that you’re experiencing. I hope that you feel grateful for the gifts that remain in your life, because cultivating a feeling of gratitude is healing and good for the soul. I hope that this is a time of healing for your body, mind and spirit.

I truly wish you Happy Holidays, friends!

Huge hugs,

Lisa

Post Script – Tragically, several people have lost their battles with fluoroquinolone toxicity recently. My heart aches for their loved ones. I’m sure that this holiday season will be especially difficult for them, and I am so, so, so sorry for their losses! I hope that they are able to find some hope and healing even though the holidays will, undoubtedly, be difficult. Huge hugs to each of you!

 

flu tox get help you need banner click lisa

In Memory of Dr. David Flockhart

On November 26, 2015, the floxie community lost Dr. David Flockhart, M.D., Ph.D., a beloved physician and researcher who passed away at his home in Indianapolis, surrounded by his family, after a year-long struggle with an aggressive form of brain cancer called glioblastoma multiforme.

Dr. Flockhart was a beacon of hope for many people dealing with fluoroquinolone toxicity. He acknowledged the harm done by fluoroquinolones, and was able to help hundreds of floxies with both his vast knowledge of the harm that fluoroquinolones do, and personalized treatment protocols. His floxed patients loved him for his caring bedside manner and he was considered by many to not only be a physician, but also a friend. He will be missed by many.

A lovely obituary for Dr. Flockhart can be found here – http://sideeffectspublicmedia.org/post/remembering-david-flockhart-md

From the above obituary, it is noted that, “Over the course of his career, he (Dr. Flockhart) became one of the world’s foremost authorities on drug interactions and reactions. Patients from around the nation sought his opinion when other doctors insisted they were simply imagining or inventing sometimes painful and debilitating side effects.”

Dr. Flockhart spoke out to the media about adverse effects of fluoroquinolones. He noted in the PBS Newshour Frontline expose, “Certain Antibiotics Spur Widening Reports of Severe Side Effects” that, “You don’t use these big guns, if you like, for killing mosquitoes, for little limb infections. You should use them appropriately for big infections that they’re useful for.”

Also, reported in the Washington Post article, “It Pays to Read the Warnings When You Open Up a Prescription,” “’The vast majority of physicians don’t even know how to report side effects to the FDA. They don’t have a clue,’ says David Flockhart, head of the Department of Clinical Pharmacology at the Medical School of Indiana University. ‘And there’s a psychological resistance to believing that what they’ve done has hurt.'”

Dozens of other quotes from Dr. Flockhart about fluoroquinolones can be found throughout the internet.

Dr. Flockhart didn’t only focus on fluoroquinolone toxicity. His career in research and medicine had many facets. He was a pioneer and leader in the field of pharmacogenetics, the understanding of how an individual’s genes affect his or her response to drugs. Additionally, “He published more than 250 articles, reviews, and book chapters, and was a member of many prestigious professional organizations. He received numerous awards, including the Leon I. Golberg Memorial Lecture Series Award from the University of Chicago, the Rawls-Palmer Award for Progress in Medicine from the American Society for Clinical Pharmacology and Therapeutics, and the Nathaniel T. Kwit Memorial Distinguished Service Award from the American College of Clinical Pharmacology.” (quoted from his obituary)

Candy Markman, a past board member of Amnesty International’s U.S. section and a personal friend of Dr. Flockhart noted that, “He was an enormously compassionate human being who really respected other human beings.”

My condolences to Dr. Flockhart’s family, friends, patients and associates. He is missed.

 

flu tox get help you need banner click lisa

 

The Healing Power of the Sea

Lisa Kauai

If I could turn back time, and I had to go through the acute stage of fluoroquinolone toxicity again, I would forego 90% of the doctors’ appointments and I would head straight for the beach. Really–I’m not joking at all. The times that I’ve spent at the beach, and, specifically, in the ocean, have been incredibly healing for me. The sea has given me significant symptom-relief, and I have felt great progress in my healing every time I have visited the ocean post-flox.

The sea is like a giant mineral bath. It is full of magnesium, sodium, and trace minerals (including iodine). Our bodies absorb these minerals through our skin. As most who are reading this know, fluoroquinolones deplete the body of magnesium, iron and other minerals. Soaking in ocean water can help to replace those minerals. Additionally, fluoroquinolones damage the thyroid, and the iodine in the sea may help to repair the thyroid.

I am guessing that most of the benefits I feel while at and in the ocean have to do with the absorption of minerals from the sea into my body through my skin, but there are other benefits to being at the beach too. The times that I’ve gone to the beach post-flox have all been times when I’ve been on vacation, and I have been relaxed while I’ve been there. De-stressing is good for everyone, especially floxies whose GABA neurotransmitters are downgraded, causing them to have difficulty relaxing (though the difficulty relaxing tends to be paired with fatigue – a horrible combination, for sure). I also got tons of vitamin D3 from the sun while at the beach, and vitamin D3, as well as other beneficial things from the sun, are anti-inflammatory and good for the body.

This is a bit woo-woo, but I’ve always felt like being in the water was good for me energetically. It feels as if my nervous system is both energized and relaxed when I’m in the water. In my recent interview with Dave Asprey on Bulletproof Radio we chatted about this. The healing effects of submersion in water for people dealing with multi-symptom, mysterious illnesses, are documented–though I’m not sure of the mechanism through which water heals.

Post-flox, I’ve always felt better in the water. Swimming, even in chlorinated pools, has been healing for me. But I never feel as good in a pool as I do in the ocean. The pool is healing, but the ocean is magical for me. It helps–immensely.

I was never a beach person before I got floxed. I was born and raised in Colorado and I am a mountain girl through and through. I never understood the appeal of beaches–they’re sandy, the sea-water makes my skin sticky, and I both overheat and get sunburned easily. After I got floxed though, I started to appreciate the water because it was healing and energizing for me. About 10 months post-flox I went on vacation to Hawaii and felt the healing power of the sea. Being in the ocean felt AMAZING! Ever since then, I have gotten in the ocean whenever I have the opportunity, and each time it has been invigorating and healing. I guess that I’m a beach/ocean person now–there are worse changes in the world. :p

I hope that fellow floxie friends find the ocean to be as invigorating and healing as I do. The sea is one of my favorite kinds of medicine.

 

flu tox get help you need banner click lisa

Bulletproof Radio Interview

I had the honor of being interviewed by Dave Asprey for Bulletproof Radio, one of the best, and most popular, health podcasts in the world.

Check it out!

Bulletproof fluoroquinolone antibiotics

https://www.bulletproofexec.com/lisa-bloomquist-know-antibiotics-restore-mitochondria-263/

https://itunes.apple.com/us/podcast/bulletproof-executive-radio/id451295014?mt=2&ign-mpt=uo%3D4

Please subscribe to Bulletproof Radio, download episode #263, “Know Your Antibiotics & Restore Your Mitochondria” and tell all your friends to do the same. Thank you!

Bulletproof Radio has more than 1,000,000 subscribers, and to be able to reach that many people with information about fluoroquinolone toxicity is, potentially, a very, very, very big opportunity, and a very big deal for the “floxie” community.

Where do I even begin describing what an honor it is to have the opportunity to be featured on Bulletproof Radio, Dave Asprey’s popular and influential podcast?

Dave Asprey is the ultimate Bio-Hacker. (You can read about his biohacking endeavors in this article – http://www.mensfitness.com/life/entertainment/inside-personal-health-laboratory-bulletproof-coffees-dave-asprey-worlds-most.) He has sought to optimize his health and performance in all areas, and he has shared his optimal diet, as well as supplement tips, on his web site, https://www.bulletproofexec.com/, and in his excellent book, The Bulletproof Diet: Lose up to a Pound a Day, Reclaim Energy and Focus, Upgrade Your Life.

According to his bio on facebook, “Dave Asprey is a, biohacker, Silicon Valley investor, entrepreneur and the man behind Bulletproof® Coffee. He is the founder of Bulletproof Nutrition, which reaches more than 1.5 million visitors monthly. His top-ranked podcast, Bulletproof Radio, has 9+ million downloads. He has also been featured on the Today show, Nightline, CNN, and in Financial Times, Rolling Stone, Men’s Health, Vogue, Marie Claire, Slate, Forbes, and more. He lives with his family in Victoria, British Columbia.”

And, according to the iTunes summary of Bulletproof Radio, “Bulletproof Executive Radio was born out of a fifteen-year single-minded crusade to upgrade the human being using every available technology. It distills the knowledge of world-class MDs, biochemists, Olympic nutritionists, meditation experts, and more than $250,000 spent on personal self-experiments. From private brain EEG facilities hidden in a Canadian forest to remote monasteries in Tibet, from Silicon Valley to the Andes, high tech entrepreneur Dave Asprey used hacking techniques and tried everything himself, obsessively focused on discovering: What are the simplest things you can do to be better at everything? Welcome to being Bulletproof, the State of High Performance where you take control and improve your biochemistry, your body, and your mind so they work in unison, helping you execute at levels far beyond what you’d expect, without burning out, getting sick, or just acting like a stressed-out a*****e. It used to take a lifetime to radically rewire the human body and mind this way. Technology has changed the rules. Follow along as Dave Asprey and guests provide you with everything you need to upgrade your mind, body, and life.”

It is truly an honor to have the opportunity to share information about fluoroquinolone toxicity on Bulletproof Radio. Thank you for listening!

 

flu tox get help you need banner click lisa

Who Knows About Fluoroquinolone Toxicity?

There are people who should know about the dangers of fluoroquinolone antibiotics.

The FDA should know about the dangers of all the drugs on the market. There should be people at the FDA who have read the 200+ articles I have HERE about the damage that fluoroquinolones do to cells. And there should be people at the FDA who track adverse drug reactions and therefore realize that adverse reactions to fluoroquinolones involve multi-system, often chronic, illness and disability. There should be people at the FDA who realize that a 43 page warning label for Cipro/ciprofloxacin is an indication that it’s a dangerous drug, and there should be people at the FDA who push for restrictions on drugs that carry black-box warnings–the most severe warnings possible before a drug is removed from the market. It’s the JOB of the FDA to regulate drugs and to protect the public from drugs whose benefits don’t outweigh their risks. The powers-that-be at the FDA should be working toward more prudent and appropriate use of fluoroquinolones, because it’s their job (and duty, and mission, and moral obligation) to do so.

Doctors should know about the dangers of fluoroquinolones because they prescribe them, and it’s not too much to ask that doctors know the side-effects of the drugs they prescribe. We, as patients, also ask that our doctors recognize adverse drug reactions when they see them. It would be even nicer if they could cure us and reverse adverse drug reactions, but maybe that’s asking too much. Some knowledge about the dangers of the drugs they prescribe isn’t too much to ask for though.

Pharmacists should realize that fluoroquinolones are dangerous drugs. They study drugs much more extensively than doctors do, and they’re the last line of defense before a patient receives a prescription, so it’s expected that they should know about the risks associated with all the drugs they dispense.

It is expected that all of these people will not only know about the dangers of the drugs they regulate, prescribe or dispense, but also that they will protect patients/consumers from using them inappropriately and getting hurt by them unnecessarily.

I don’t think that it’s too much to expect, and I think that some anger at the FDA, doctors and pharmacists is appropriate given their collective failure to minimize the damage done by fluoroquinolones.

There’s a problem with these assertions though. Even though the FDA, doctors and pharmacists SHOULD know about the dangers of fluoroquinolones and about fluoroquinolone toxicity, I don’t think they do.

I don’t think that they actually realize the severity of adverse reactions to fluoroquinolones. I don’t think that they realize that people who were previously healthy can have all aspects of their health and lives ruined by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or any of the other fluoroquinolones.

It is too bizarre, and too unheard of, that a class of ANTIBIOTICS could cause multi-symptom, chronic, disabling illness. Fluoroquinolones are antibiotics, and even though medical professionals and regulators should know better, many believe all antibiotics are benign drugs.

As frustrating as it is for those of us who know first-hand how terrifying and destructive fluoroquinolone toxicity is, I think that it will behove us to recognize that, unfortunately, most doctors, pharmacists and even FDA personnel, don’t realize how dangerous fluoroquinolones are, or how devastating fluoroquinolone toxicity is to its victims.

I know of several physicians, pharmacists and scientists who have been “floxed.” They were just as blind-sided by their adverse reaction as anyone else. They didn’t know how severe and life-altering the effects of fluoroquinolones could be until they were personally affected by them.

fluoroquinolone-lawsuit-banner-trulaw

It can be difficult for those who have experienced fluoroquinolone toxicity to recognize, but many medical personnel truly didn’t know about fluoroquinolone toxicity. Doctors and pharmacists weren’t taught about fluoroquinolone toxicity in medical or pharmacy school, and the reactions are bizarre enough that they’re difficult to recognize in practice, so they don’t see it until it happens to them.

Unfortunately, I don’t think that the people at the FDA know either.

While listening to the FDA’s Antimicrobial Drugs Advisory Committee at the November 5, 2015 meeting to, “discuss the risks and benefits of the systemic fluoroquinolone antibacterial drugs for the treatment of acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis in patients who have chronic obstructive pulmonary disease, and uncomplicated urinary tract infections in the context of available safety information and the treatment effect of antibacterial drugs in these clinical conditions,” I got the distinct feeling that the FDA committee members didn’t realize the extent of the damage that fluoroquinolones do. Even though their meeting brief noted that fluoroquinolones can cause disability, the committee members still seemed surprised by the severity of the adverse reactions described by victims of fluoroquinolones.

Though they seemed to hear those who testified, and they listened respectfully, I think that stories such as the following were a surprise to the committee members:

B.C (Before Cipro):  I was a hiker, biker (rode my bicycle across the US carrying 50 pounds), hockey player, horseback rider, swimmer; thin, fit, worked in moderately physically demanding profession, no known health issues other than a simple UTI.

A.C:  (After Cipro):  Five days and 10 pills later:  crippled with unrelenting pain, unable to walk, sit, stand, use arms, fingers, or type due to severe body-wide tendon pain; hallucinations, tinnitus;  central, autonomic, and peripheral neurological issues;  severe neuromuscular damage; vision and hearing issues;  severe endocrine abnormalities (glucose, thyroid); severe cardiac issues;  autoimmune issues.

A.C. Permanently :  Five years later:  Still suffering and disabled; can’t work, lost profession, lost financial security, lost marriage, lost hope for any reasonable quality of life.   Denied by medical profession due to no known diagnostic biomarkers; denied legal recourse due to generic; denied SSDI due to the first two and denial by the FDA and everyone involved, and ultimately, will be denied as the most probable cause of my death.

I don’t think that the FDA committee members were aware that fluoroquinolones could do that much damage. How could an antibiotic do that much damage? It’s unheard of, but it’s still true–fluoroquinolones can, and do, an immense amount of harm.

The FDA’s Antimicrobial Drugs Advisory Committee now knows about the harm that fluoroquinolones inflict. They sat through our testimony and they can no longer claim ignorance. They were told, in no uncertain terms, about the devastation that fluoroquinolones have brought to people’s lives. They acknowledged that the warning labels currently on fluoroquinolones do not appropriately convey the risks involved with taking these dangerous drugs to treat simple infections.

The FDA needs to convey to doctors, pharmacists, and the public, that fluoroquinolones are dangerous drugs with severe side-effects, and that it’s not appropriate to use them for treatment of simple infections. If the FDA updates the warning labels on fluoroquinolones to note that fluoroquinolone associated disability is a possible effect, maybe more doctors and pharmacists will recognize that they should not only avoid these drugs themselves, but that they should avoid them for use in patients too.

We, as victims of fluoroquinolones and patient advocates, are screaming loudly about the devastating effects of fluoroquinolones. There have been hundreds of news stories over the last year about the dangers of fluoroquinolones. The November 5th FDA committee hearing was a resounding success. The term “flox” is becoming recognized, and people who have not been “floxed” themselves are recognizing what it means when someone says, “I am bed-bound and I lost my job because I got floxed.” The word is getting out and those doctors and pharmacists who are paying attention are recognizing that fluoroquinolones are consequential drugs. At some point we will be able to say, “you should have known” when confronting a doctor or pharmacist about a fluoroquinolone toxicity reaction. Right now though, many doctors, pharmacists and even FDA personnel, don’t know how horrible fluoroquinolone toxicity reactions can be.

Our “bottom-up” efforts are making a difference, but some “top-down” efforts are sorely needed too. The FDA must thoroughly communicate the dangers of fluoroquinolones to doctors, pharmacists and patients.

Ignorance is not bliss when millions of fluoroquinolone prescriptions are being handed out, and thousands of people are being devastated by these dangerous drugs. Everyone involved in the medical system, including patients, needs to be informed about the dangers of these drugs. Currently, they are not. Currently, they don’t know about fluoroquinolone toxicity. Change is coming though. The more patients are listened to, the faster change will come. 

 

flu tox get help you need banner click lisa

 

Floxie Hope Email List and Free Ebook

HackingFQad

 

After 2.5 years, and more than 200 posts, I’m finally starting an email list for Floxie Hope. 🙂

If you sign up for the email list, you will get healing tips, links to interesting studies, updates on the recovery progress of those who have recovery stories on Floxie Hope, and more. You can sign up for the email list through this link – http://forms.aweber.com/form/15/753869915.htm – or through clicking the picture above.

You will also get a FREE EBOOK called HACKING FLUOROQUINOLONES if you sign up for the email list.

Hacking Fluoroquinolones describes the multiple levels of damage that fluoroquinolones do. Fluoroquinolones damage mitochondria, they leach minerals out of cells, they damage the microbiome, they damage the thyroid, and more. Information about each of these damage mechanisms is noted in Hacking Fluoroquinolones.

Thank you to all who sign up for the email list! I promise to share good information with you!

I won’t send you spam or share your email address with anyone else. As is the case with all legal email lists, you can unsubscribe at any time.

Many people already “follow” Floxie Hope. Thank you to all who do! This email list is different from “following” this site. When you follow Floxie Hope, you are sent an email whenever a post goes up. If you subscribe to the email list, you will receive the Hacking Fluoroquinolones ebook and follow-up emails with useful tips and information. You are welcome (and encouraged) to do both.

Thank you all for your support! I hope that Hacking Fluoroquinolones, and all the information on Floxie Hope, is helpful to you!

HackingFQs