Monthly Archives: November 2016

Fluoroquinolone Toxicity is a SYNDROME

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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!

 

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Fluoroquinolone Toxicity and Acetylcholine (ACh) Damage

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I suspect that fluoroquinolone antibiotics deplete, inhibit, or otherwise 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 (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).

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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.

 

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Hope Heals and Unites

Be Kind

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.

 

 

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Vision Problems from Fluoroquinolones

vision-problems

A few years ago, I was chatting with a work associate about fluoroquinolone toxicity, and she mentioned that a friend of hers had lost her vision after taking ciprofloxacin. Yes, you read that correctly–her friend LOST HER VISION as a result of getting floxed. I was shocked and appalled. Losing my energy was bad enough, I can’t even fathom going blind, even temporarily, from taking an antibiotic. My associate’s friend had to take more than a month off of work, and several months off from driving, in order for her eyes to heal and her vision to return to a level at which she could return to doing those things. Her vision did return, and I believe that this was her only side-effect, but still, losing one’s vision is a pretty serious and severe side-effect. I’d be pretty upset if I COULDN’T SEE as a result of taking an antibiotic.

I have heard from many other people who have suffered from vision problems, including blurred vision, floaters, dry eyes, “visual snow,” and a loss of comprehension of visual information, post-flox.

In a comment on this site, Joyce described her vision problems as follows:

“Could Levaquin caused my visionroblem that happened sudden? Yes, I can type but onlyk because I’ve done years and years of 12-18 hour days of typing so as long as I know where the keyboard is, I can type — can barely see the letters so errors elude me.

Sunday, October 9, 2016, myvision went from being okay to not there in the blink of an eye — literally. My husband and I were eating lunch in a restaurant, someone sat down at a table near us, I glanced over, when I glanced back at my husband, my vision was gone except for a narrow bright white area to the right and bottom of my vision field. Called optometrist, he initially diagnosed a pin stroke and told me to go to ER, so I did. CT at ER showed nothing but as precaution, was given TPA and flown to major hospital. Three CT scans there showed nothing. Ultrasound of heart showed it to be in good shape. Cholsterol loa, blood sugar low, BP kept dropping on its own so docs happy with all that. MRI showed “shadow” in right temporal lobe — docs didn’t know if it was bleeding or what, nor how long it had been ther enor if it would go away.

Upper left quadrant of visual field seems as if I’m looking through a dense brown fog. Rest of visual field is useable — can get around on my own, do housework, walk, etc., but can’t see to drive, read nor do my job which is thypesetting and graphic design. Dark area has decreased by about 70% since initial onset but isn’t improving past that.”

In “Painful Dry Eyes” on www.fluoroquinolonethyroid.com, JMR describes her post-flox dry eyes as follows:

“The severely dry eyes affected everything: my ability to read, to watch TV, to use the computer, to write, to look out on the world; to be athletic, to be outside in the wind or cold night air; to blink the 23,000 -30,000 times a day the average person blinks without feeling the dry, gritty pain with each one of those blinks; to sleep at night without waking up constantly in pain just from my dry eyes alone. There’s “dry eyes”, and then there’s “Bone-Dry eyes” – zero moisture what so ever – and I simply couldn’t live a life worth living with that.”

The warning label for Cipro/ciprofloxacin notes that, “blurred vision, disturbed vision (change in color perception, overbrightness of lights), decreased visual acuity, diplopia, eye pain, tinnitus, hearing loss, bad taste, chromatopsia” are special sense related adverse-effects that have been reported. The warning label text feels so flippant–as if decreased visual acuity and/or eye pain aren’t serious, life-altering, horrible side-effects for a drug to have. Did anyone’s doctor warn them that they may have long-term vision problems as a result of taking Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or Floxin/ofloxacin? No? I didn’t think so.

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If you read the full “Painful Dry Eyes” post on www.fluoroquinolonethyroid.com you will note the connections that the author makes between thyroid hormone (and iodine) levels and the severity of her eye-related fluoroquinolone toxicity symptoms. If you read through more posts on www.fluoroquinolonethyroid.com you will see that there are many connections between fluoroquinolone toxicity symptoms and thyroid hormones. A summary of the connection can be seen in the post “Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection?” on www.hormonesmatter.com.

It is clear from patient reports that fluoroquinolones badly affect hormonal stability and balance. The site, www.fluoroquinolonethyroid.com, goes over how thyroid hormones are adversely-affected by fluoroquinolones. Patient stories such as Andrew’s Story and Gary’s Story go over how fluoroquinolones deplete testosterone. Many women have reported that their fluoroquinolone toxicity symptoms are greatly affected by hormonal fluctuations that correspond with their menstrual cycles. Additionally, in the article “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population” several endocrine-system disorders are listed as risk factors for fluoroquinolone-related musculoskeletal problems.

Hormones also greatly affect vision and eye health. In “Blinded By Side Effects: Vision and Hormonal Birth Control,” Kerry Gretchen states:

“Hormones affect every system of the body so perhaps it should come as no surprise that they can greatly impact your vision. In fact, it is the fluctuation in hormones that is the primary reason for worsening eyesight with age. So of course, manipulating the body’s natural chemistry by using hormonal birth control can cause a variety of vision problems.”

Blinded By Side Effects: Vision and Hormonal Birth Control is an interesting and insightful post that I recommend you read for more information about the hormone-vision connections. Though it focuses on how hormonal birth control affects vision–not on connections between fluoroquinolones, hormones, and vision problems–the connections just between hormonal disturbances and vision problems are interesting and relevant to “floxies” of both sexes.

I believe that post-flox vision problems are related to hormone imbalances. Working with a good doctor to help get your hormones back in balance (or, at least to run some tests) seems like an appropriate course of action for any “floxies” who are suffering from severe, life-altering, vision/eye related side-effects. Hormones are notoriously difficult to balance though, and caution is warranted. “Balancing your hormones” may be easier said than done, but working on it, and getting information from a doctor who works with patients with hormonal problems, seems like a good path to start down.

Time may also help. My peripheral vision floaters went away less than a year after getting floxed, and my eye moisture returned a few years after that. (My eyes were never dry to the point that they were painful, but I didn’t wear contact lenses for a while post-flox. I can wear them again.) I can’t pinpoint anything specific that helped other than time and maybe acupuncture. My vision problems weren’t near as bad as those of my work associate’s friend, Joyce, or JMR though. If my symptoms had been that severe, I probably would have been willing to try pharmaceutical and/or supplemental hormonal adjustments.

As is the case with most fluoroquinolone toxicity symptoms, there is no cure for vision-related fluoroquinolone toxicity issues, and even getting recognition of the reality of the multifaceted adverse-effects of these drugs is difficult.

Fluoroquinolone toxicity symptoms are severe, fluoroquinolones adversely affect multiple bodily systems including vision, and the symptoms of fluoroquinolone toxicity are often not reversible through medical interventions. Therefore, fluoroquinolones should not be prescribed unless absolutely medically necessary. This isn’t that difficult a concept–it should be reality.

 

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