Tag Archives: Fluoroquinolone toxicity

Dr. Bennett identifies what the government should be doing — but isn’t — to guard against unsafe prescription drugs

Dr. Charles Bennett has been an advocate for addressing fluoroquinolone safety concerns for many years. He has has filed multiple petitions with the FDA to get them to change the warning labels for fluoroquinolones–one of the petitions is to get the FDA to add Psychiatric Adverse Events to the Levaquin/levofloxacin warning label, another is to have the FDA add “Possible Mitochondrial Toxicity” to the Levaquin Label, another requesting a black box warning to specifically identify psychiatric adverse events, including suicide and suicide-related adverse events, and likely others. These petitions have led to warning label changes, and have been featured in many of the news stories about fluoroquinolones. Dr. Bennett has also testified before the FDA about fluoroquinolone adverse reactions, and has helped many “floxies” to gain information and support. He is a wonderful advocate, and his advocacy work has increased the credibility of other advocates for fluoroquinolone toxicity awareness. He has changed how many people think of fluoroquinolones, and he has changed how fluoroquinolones are prescribed. He is making a difference.

Dr. Bennett recently wrote a wonderful editorial that was published in the LA Times entitled, “What the government should be doing — but isn’t — to guard against unsafe prescription drugs.” I highly recommend that you read and share it. He has some great ideas and insights, some of which I’m going to highlight in this post (all italicized and indented sections of this post are quotes from the editorial).

He, and his co-authors, state:

The failings are at every point in the system, starting with drug approvals. But we believe there is a particularly serious problem with the mechanisms for identifying, monitoring and disseminating information about issues with a drug after its release.

Once a drug is approved for market, the FDA relies on an informal and ineffective system of case reports and citizens’ petitions to alert it to problems and adverse events. In the past, case reports, submitted to medical journals by physicians, served as an important mechanism for detailing drug toxicity. But today, because of changes to editorial guidelines, peer-reviewed journals rarely accept such reports for publication.

Indeed. Take it from a doctor who specializes in studying adverse drug reactions that the current system of tracking and addressing concerns about adverse drug reactions is failing and ineffective. How many of the thousands (perhaps millions) of adverse reactions to fluoroquinolones have been reported to the FDA through either the adverse event reporting system, a case report, or a citizen’s petition? Unfortunately, not many. It should be noted that, “Many studies have documented that only 10%-15% of serious adverse reactions are reported” to the FDA. Though I encourage every “floxie” to report his or her adverse reaction to the FDA, a voluntary reporting system that is confusing and difficult to navigate, is not a particularly effective way of tracking the actual incidence of adverse drug reactions.

Dr. Bennett also notes that Citizen’s Petitions (many of which he has filed) are not an effective tool for tracking and evaluating post-market adverse drug reactions:

Citizens’ petitions, in which any citizen can petition the FDA to report adverse drug effects, are intended to be another check. But the petition process is cumbersome, and they are rarely granted. Of the 1,915 Citizens Petitions filed in the 12-year period between 2001 and 2013, a total of 13 were granted. Many go unanswered altogether.

The citizen’s petitions filed by Dr. Bennett, Public Citizen, and others, have been helpful advocacy tools, but, as Dr. Bennett and his co-authors point out, they have not been adequate.

Rather than continuing with the ineffective system of depending on patient and doctor reports of adverse reactions, citizen’s petitions, and case-reports to monitor and track adverse drug reactions, Dr. Bennett suggests that a new system for tracking and monitoring drugs with black-box warnings be implemented.

We propose a “black box” database or “registry,” publicly available and simple to use, that would contain extensive information about where, by whom and for what purpose black box drugs are prescribed, as well as where and in what quantities such drugs are being distributed and sold. Information about adverse side effects, culled from the myriad of government databases that now collect them, would also be consolidated in an open form and format.

In addition to the benefits of a black box database/registry noted above, a black box database/registry also has the potential to decrease usage of drugs that have black box warnings:

Is there a chance that the existence of a black box registry would decrease the use of those drugs? Possibly, and that would be a good thing. Too often black box warnings are seen as meaningless, and they are counteracted with marketing campaigns that promote off-label use. If adding more transparency, thought and effort to the prescription and sale of dangerous drugs winds up decreasing their use, that will likely be a beneficial side effect.

It would be WONDERFUL if there were a system in-place that cut down on unnecessary fluoroquinolone prescriptions. It would be WONDERFUL if there were a system in-place that adequately communicated the real risks of fluoroquinolones. I think that Dr. Bennett’s idea of creating a black box registry is an excellent way to do both those things, and it’s absolutely worth a try. The system that we currently have for tracking and addressing adverse drug reactions is woefully inadequate. Change is good – especially if it is in the direction of making people safer.

Thank you Dr. Bennett and co-authors for writing “What the government should be doing — but isn’t — to guard against unsafe prescription drugs.” Your insights and advocacy are greatly appreciated!

*****

Prominent Activist Notes Possible Connections Between Fluoroquinolones and ME/CFS

I’m a big fan of Jennifer Brea–an activist and advocate for those with ME (Myalgic Encephalomyelitis – also known as Chronic Fatigue Syndrome or CFS), and the filmmaker behind the wonderful documentary Unrest. She is also heavily involved with the ME Action Network, “A global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome,” and a blogger on Medium. She is powerful, thoughtful, interesting, insightful, an amazing leader, and she has helped thousands (maybe millions) of people with ME to live with, and maintain hope through, a horrible and debilitating disease. She has brought understanding of the horror of ME to people in a way that is empathetic and thought provoking. She is a wonderful advocate for her community.

AND, I’m excited to tell the “floxed” community…

Fluoroquinolones are on her radar as a possible cause of connective tissue disorders that may lead to ME.

In her July 10, 2019 post, “Onset: Part III (Connections),” she notes that antibiotics are a potential cause of collagen and connective tissue disorders:

Antibiotics: doxycycline, which anecdotally some patients have benefited from, inhibits MMPs. Fluroquinolone antiobiotics, which can produce an ME/CFS-like illness, increases MMPs and in December 2018, the FDA issued a warning against its use in patients with Ehlers-Danlos Syndrome and Marfan Syndrome.”

Indeed, fluoroquinolones increase production of MMPs–a category of enzymes that are capable of degrading all kinds of extracellular matrix proteins including, but not limited to, the structural proteins of the aortic wall.

The article, “Ciprofloxacin enhances the stimulation of matrix metalloproteinase 3 expression by interleukin‐1β in human tendon‐derived cells” notes the following:

In this study, we have shown that the antibiotic ciprofloxacin, which induces tendon pain in some patients (1) and tendon pathology in rodents (3, 4), can increase MMP expression in human tendon‐derived fibroblasts. Specifically, ciprofloxacin potentiated IL‐1β–stimulated expression of MMP‐3 at both the mRNA and protein level.

Tendon pain and degeneration have been associated with an increase in the normal turnover of matrix proteins (9, 10, 12). MMP‐3 has a broad substrate specificity; it is able to degrade matrix components including type III collagen and the proteoglycans aggrecan and versican, and is capable of activating a variety of other MMPs and pro–tumor necrosis factor (11). However, its role in tendon physiology and pathology has not been clearly defined.

Our results raise the possibility that a combination of fluoroquinolone and (fluoroquinolone‐induced) inflammatory mediators might result in the inappropriate or unbalanced expression of MMPs.

Changes in expression of matrix components such as collagen and proteoglycans have also been reported in response to various fluoroquinolones.

The increase in MMP expression may not be the only way that fluoroquinolones damage and destroy connective tissues, but it’s almost certainly one way.

More information about the increase of MMP expression caused by fluoroquinolone antibiotics can be found in the post, “Fluoroquinolones Increase Expression of MMPs” as well as these links:

In a couple posts on this site, I have noted that ME/CFS caused by connective tissue disorders may be proceeded (even caused by) fluoroquinolone exposure. You can read about these theories in the posts Are Fluoroquinolones Causing Connective Tissue Disorders that are Leading to ME/CFS? and Do Fluoroquinolones Cause Cerebrospinal Fluid Leaks?

In Jen Brea’s post she note that there are many causes of collagen and connective tissue disorders, including viral infections, bacterial infections, mold, pregnancy, surgery, car accident, concussion, Ehlers-Danlos Syndrome and other connective tissue disorders, and sex hormones.

It is likely that many people who suffer from ME/CFS, as well as many “floxies,” have been exposed to several of these triggers. Personally, I was exposed to both fluoroquinolone antibiotics and changes in sex hormones (my period) when the flox bomb went off in me. I don’t think I had an actual infection, but most people also have a concurrent bacterial or viral infection when they take fluoroquinolones. I have also surmised in the past that perhaps floxies (as well as people with ME/CFS) have a yet-to-be-discovered form of Ehlers-Danlos syndrome. I also think that there are genetic predispositions to both fluoroquinolone toxicity and ME/CFS, and that the RCCX theory by Dr. Sharon Meglathery is a good place to start when looking at genetic predispositions for all sorts of mysterious illnesses. On the site https://www.rccxandillness.com/ Dr. Meglathery states:

“I believe that the RCCX Theory solves some of medicine and psychiatry’s greatest mysteries. The RCCX Theory explains the co-inheritance of a wide range of overlapping chronic medical conditions in individuals and families (EDS/hypermobility, autoimmune diseases, chronic fatiguing illness, psychiatric conditions, autism, etc.). It explains the underlying pathophysiology of chronic fatiguing illnesses with so many overlapping features (EDS-HT, CFS, Chronic Lyme Disease, Fibromyalgia, toxic mold, Epstein Barr Infection, MCAS, POTS, etc.). And finally, it reveals the gene which I believe confers a predisposition toward brilliance, gender fluidity, autistic features, and stress vulnerability, as well as the entire spectrum of psychiatric conditions (other than schizophrenia which can be co-inherited).”

Though there is significant overlap between fluoroquinolone toxicity and ME/CFS they are not the same, and there are many people suffering from ME/CFS who had other triggers set off their illness. With that said, the evidence that ME/CFS is a connective tissue disorder is mounting, and if a debilitating disease like ME/CFS is caused by disordered connective tissues, perhaps drugs that are known to cause connective tissue disorders (fluoroquinolones) shouldn’t be prescribed by the millions each year.

I appreciate that a leader like Jennifer Brea has the fluoroquinolone connection on her radar, and I hope that those in the ME/CFS community that are floxies as well are able to gain insight and support from both our communities.

I also suggest that everyone watch her wonderful film, Unrest. As a recent floxie hope commenter said, “It’s a good window of what it’s like to live with a chronic illness and I think a great example of what it’s like to have a supportive partner (her husband Omar).” Here’s the trailer:

At the risk of sounding too much like a fan-girl, I’m pretty stoked that fluoroquinolone toxicity is on Jen Brea’s radar, because I think she’s amazing. Read and watch her work, and I think you’ll agree. Much of it will likely resonate with many “floxies” as well.

*****

 

Floxed Friday – Levofloxacin in the Hospital

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
 
The following was written by Michelle: 

I almost missed the Floxed Friday update this week because for the past few days, we have been applying to grants to finish post-production (and scheduling the rest of production – very exciting!) and I’ve been tending to my grandmother with her recent dementia episode.

Because of this, I’ve been in-and-out of the hospital, working from my phone. After getting floxed myself, I had PTSD, triggered any time I entered a hospital or even thought about a hospital. If you haven’t read my floxie story, it’s here, but TL;DR: (“too long, didn’t read” for those of you unfamiliar with internet culture), I had a horrendous experience admitted to one of the worst hospitals in Los Angeles while neurotoxic. Thanks to a ton of work with an amazing PTSD therapist, I am no longer triggered by hospitals. Still, it isn’t fun for anyone to spend three days in-and-out of one.

While waiting for a prescription antibiotic the other day (yes, I checked – it wasn’t a fluoroquinolone), I overheard someone at the window say “levofloxacin” to another patient. Although I’m not afraid of hospitals, anything with “-floxacin” makes my heart beat a little faster. I immediately questioned what to do.

Should I say something? We are in a hospital, it could be prescribed appropriately, but outpatient? Would saying something change anything or just make things worse? Would they believe me? Is it too late anyway? I didn’t even see who it was.

Sitting with my uncle, who had previously told me that a coworker of his takes Cipro regularly “with no side effects” and yes, he did tell him what happened to me, I figured that saying anything (which would violate HIPAA anyway) may not matter at all, so I sat in silence, impatiently tapping the chair. I’m already doing something. We’re making a film about this. It’s okay. They are explaining the side effects. Relax.

It’s frustrating to feel helpless in scenarios like these, especially considering you don’t want to be seen as the “crazy person” yelling at a complete stranger, telling them about that one drug that ruined your life with words like “mitochondria damage, tendonitis, and neurotoxicity,” even if that’s the first instinct. Yelling, making scenes, and applying a sense of urgency to your tone rarely makes anyone listen. Dare I say, it may hurt the cause.

Thankfully, during an interview with Dr. Joe Ketcherside, MD last week, we discussed possible solutions to end antibiotic misuse once-and-for-all. I want to tell you guys everything we discussed because as a former neurosurgeon, Joe has a lot of experience with antibiotics and a passion for change. He had a lot to say and even gave me a bit of hope. However, you will have to wait until the film is out!

Until then, we will be searching for funding so we can finish this thing and I will still visit hospitals regularly… unfortunately. If you would like to help in any way, feel free to email us.

Have a great weekend!

Best,

Michelle Polacinski
Floxie, Director, and Executive Producer of ‘Floxed’

******

 

Finding the Silver Linings

“Do some good things possibly come out of it? That’s not the point! Some good things come out of a car wreck, but that doesn’t mean we need to have car wrecks. That’s a dumb-butt idea. You can find good out of almost anything. You get enough manure you can grow things with it. There’s good in almost everything. But that doesn’t mean it doesn’t stink to high heaven.” -Dave Ramsey (speaking about things that have absolutely nothing to do with fluoroquinolone toxicity, I just liked the little rant.)

This post is about the lipstick on the pig that is fluoroquinolone toxicity. There are several shades of lipstick that I’m going to point out in this post, and some of the shades are lovely, but they’re still on the big, fat, stinking, disgusting pig of fluoroquinolone toxicity.

No matter what good has come to my life, or the life of anyone else, from fluoroquinolone toxicity, it was still an awful and painful thing to experience. Sometimes pain and suffering lead to growth, and sometimes that growth is valuable or even beautiful, but that doesn’t make the pain or suffering “worth it” or justified in any way. You don’t torture people to make them stronger. You don’t poison people so that they can shift their perspective on the world. You don’t damage every tendon in a person’s body so that they can feel better about saving their children from their fate.

I know that fluoroquinolone toxicity is awful, and that most people would say that ZERO good has come from it for them. Fluoroquinolones have ruined people’s lives. They have killed people. They have disabled people, stolen careers, destroyed relationships, and smashed dreams.

This post is not to justify the pain that fluoroquinolones brought to me or anyone else. The harm that these drugs have done isn’t justifiable.

But life is complicated, and figuring out how to wrap your head around something like fluoroquinolone toxicity isn’t black/white. Perhaps finding the good in difficult situations is helpful (or even necessary) to move on from fluoroquinolone toxicity. Maybe it’s even healing.

A lot of good has come to my life since getting “floxed,” and some of those good things are a direct result of getting floxed. In no particular order, here are some of my silver linings of fluorouqinolone toxicity:

  1. I have this web site. Floxiehope has been a blessing for me in more ways than I can count. It has given me community, purpose, passion, drive, a powerful tool through which to communicate with others, and so much more. I am grateful for all the good that this site has brought to my life.
  2. I now have empathy for people who are suffering from multi-symptom chronic illness. I was never callous toward people with poorly understood illnesses, but I never made any effort to understand them before I got floxed. I now have appreciation for how difficult ME/CFS, Lyme disease, multiple chemical sensitivities, POTS, autoimmune diseases, iatrogenic illnesses of all types, etc. are for people. I now understand that these diseases are incredibly complex and poorly understood, and that people who suffer from them are often victimized over and over again by both the medical system and society at-large.
  3. I have a community of floxed people throughout the world that I love. I have connected with people all over the world who have suffered from the adverse effects of these drugs. These connections have added to my life in wonderful ways.
  4. I now see the harm that pharmaceuticals can do, and I will never blindly trust the pharmaceutical industry, or doctors, again. I think that this skepticism will protect me.
  5. I learned patience and kindness toward myself. I was really hard on myself while I was sick. It didn’t help. Eventually learning patience and kindness for my body, soul, and all other aspects of my self was helpful, and it made me a better person.

Fluoroquinolone toxicity has been such a big part of my life for so long that it has touched every aspect of my life, and all the good and bad that has happened since 2011 has something to do with my journey through fluoroquinolone toxicity. It shaped me. It shaped me into the woman who my husband fell in-love with and married. It shaped me into the woman who took the job that I now have. It shaped me into the friend I am today, and even the daughter I am today. I cannot separate any aspect of my life from the effects of fluoroquinolones because they changed the course of my life.

This post was inspired by a post in The Fluoroquinolone Toxicity Group on Facebook. In it, Gene asked, “Often we hear of people going through a trial in life and then they say, “X was the best thing that ever happened to me”. Can anyone share a ‘best thing’ story about their fluoroquinolone story?”

Several people responded with really thoughtful and insightful answers. With their permission, I am sharing some of the things they wrote:

Alanna: “I was always a health nut, but I became much more informed & disciplined about my general health & healing protocols that work with the body, not against it. I like to help people, including passing on what I’ve learned. My faith deepened, I had miracle answers to prayer. My husband stepped up & did hero’s work, bringing us closer. With limited energy, I trimmed the extraneous out of my life to focus on that which has value, It straightens out your priorities, doesn’t it.”

Charles: “I changed my whole perspective on life, brought me back into my faith, and generally has helped me become a much better person emotionally and spiritually”

Amanda: “Got the opportunity to dive deep with my spirituality. I’ve learned what is and what is not worth my time and energy. I’m much more compassionate and am learning how to be more assertive, as I have to voice my needs for quality of life.”

Annette: “I learned how to be my own doctor. I learned not to trust or rely on anyone but myself (that may sound like a negative, but it has actually served me well post FQ).”

Nora: “Confirmed my belief that Western medicine is about masking symptoms and a business and that sauna, fasting, exercising, and eating well make a difference in one’s health.”

Gene: “I think the best thing I can say about it is I’ve learned that I seem to have an endless will to fight and to not accept that small chalky things i put in my mouth will win. When the first symptoms hit in 2010 I said ” I do not accept this”. I’ve been fighting ever since to figure out ways to get my health back. So I am incredibly strong in that way, even if my body doesn’t always feel strong. The other thing I have gained in this is a stronger faith in the fact that there is much more to this than 80 years and than the end. We enter another world and this one will be but the blink of an eye. So maybe it is teaching me patience as well. The hardest lesson i am beginning to learn and I try to do is forgive the doctor. He did not intentionally hurt me. He is also the victim in a dysfunctional medical system. There are some powerful people in the fluoroquinolone distribution system who I do believe know a lot, and they are not acting as they should. My doctor was not one of them. He will be a victim too when full enlightenment about these drugs becomes the norm and he realizes how many people he hurt. Rather than hate him for what he did I see him more as one might see a pure accident, like an asteroid hitting me and hurting me. S—t happens to people, it’s how this place works. It’s probably good to accept that about this planet and then try all we can to make it better.”

Cathy: ” I have set an example for my kids of what true strength looks like.”

Lisa: “I am alive. Cipro was one of the few antibiotics that does not result in anaphylactic shock for me. It was used to treat a super bug I contracted after cancer surgery. I suppose that is why I am able to reconcile my current situation easier than others might.”

Bill: “Nope. No upside whatsoever. I was fine before and now still trying to get back to baseline. The “best thing that ever happened to me” thing is just an attempt at a cognitive reframe for the traumatic event….helps put it behind you. If it works for ya-great. If something good came as a result of your poisoning—again…great.”

Langdon: “Compassion for myself and appreciation for the people who are nice to me.”

Jennifer: “For sure Levaquin wasn’t the worst thing that’s ever happened to me but it was up there with the top 3 worst. The only good thing that came out of it is it forced me to alter my life and change my diet pretty drastically. I now lead a more healthy lifestyle eating 85-95% organic, way way less refined sugars & processed foods. Additionally, I am trying to lessen the toxins coming into my household by buying mostly cleaning and skincare products that are free of toxic chemicals. Of course it’s not 100% but I’ve made great strides. I’m not sure if I would’ve been on this trajectory had it not been for Levaquin. I was always health conscious but now it’s on another level. I feel like it’s life or death or at least life or really poor health. I truly grasp the concept of “if you don’t have your health you have nothing”. It’s so difficult to do anything (or care for anything) when your health is suffering so badly. I am grateful every day that I’m recovering from this nightmare and I wish everyone here the best. Healing hugs.”

Each and every one of those quotes/comments is thoughtful, insightful, and contains gems of wisdom. Thank you to each person who took the time to write these thoughtful comments, and for allowing me to re-publish them here.

Again, I am not trying to make light of the horror of fluoroquinolone toxicity. It’s not a trite, “make lemonade out of lemons” kind of situation. But I do appreciate all that has grown from the manure that ciprofloxacin brought to my life, and I hope for something positive to come of it for each of you too.

*****

 

The A to Z of Fluoroquinolone Toxicity Syndrome

The following was written by Kim Jansen. You can read Kim’s story of fluoroquinolone toxicity HERE

If you are interested in writing a guest-post for floxiehope.com, please let me know. Here is a post with more information about writing for floxiehope.

Here is a version of this post that is easier to read and print. It’s a great overview of fluoroquinolone toxicity to give to your loved-ones. The A to Z of Fluoroquinolone Toxicity Syndrome

The A to Z of Fluoroquinolone Toxicity Syndrome

A. Antibiotic. Fluoroquinolones are a family of broad-spectrum antibiotics that are commonly used to treat a variety of illnesses such as respiratory and urinary tract infections. Types of fluoroquinolones (along with their brand-names in brackets), include: ciprofloxacin (Cipro); levofloxacin (Levaquin); moxifloxacin (Avelox); gatifloxacin (Tequin); ofloxacin (Ocuflox/Floxin/Floxacin); norfloxacin (Noroxin). These antibiotics have serious side effects, with the term ‘fluoroquinolone toxicity syndrome’ being used to refer to the condition experienced by those who suffer from these side effects.

B. Bayer. Bayer is a pharmaceutical company that manufactures Cipro and Avelox. Bayer is currently facing a new lawsuit from a complainant, who has been diagnosed with peripheral neuropathy (see ‘Nerve Damage’ entry below) since 2011. She alleges that Bayer knew that Cipro could cause chronic or permanent peripheral neuropathy soon after receiving FDA (U.S) approval in 1987. By 1988, the drug companies possessed at least one published case report that constituted a safety “signal” that fluoroquinolones were associated peripheral nerve damage and that further investigation and study were necessary to protect patients. Since then, numerous other studies have affirmed this connection. This complainant’s Cipro lawsuit joins hundreds of other fluoroquinolone toxicity claims pending against manufacturers of fluoroquinolone antibiotics.

C. Central Nervous System Damage. Fluoroquinolones are able to penetrate the blood brain barrier, thus also able to damage a person’s central nervous system . The FDA in America acknowledged this fact and placed a warning about potential CNS damage on fluoroquinolone medication (see ‘FDA Warnings’ entry below). Some of the side effects of CNS damage include insomnia, restlessness, seizures, convulsions, and psychosis. An extensive collaborative investigation by scientists and member of a social network in 2016 found that 93 of 94 respondents of a survey reported fluoroquinolone-associated events including anxiety, depression, insomnia, panic attacks, clouded thinking, depersonalization, suicidal thoughts, psychosis, nightmares, and impaired memory beginning within days of fluoroquinolone initiation or days to months of fluoroquinolone discontinuation. They also discovered that mice treated with ciprofloxacin had lower grip strengths, reduced balance, and depressive behaviour compared with the controls.

D. DNA Damage. Fluoroquinolones work by inhibiting the replication of bacterial DNA. Tests have shown that these antibiotics also damage healthy DNA, including mitochondrial DNA. This is one of the likely reasons why the damage caused by fluoroquinolone toxicity affects multiple body systems and is persistent.

E. EMA. Public Hearing. In June 2018, the EMA (European Medicines Agency) held a public hearing to discuss the serious health concerns surrounding side effects of quinolones and fluoroquinolones. On 15 November 2018, EMA finalised a review of serious, disabling and potentially permanent side effects with quinolone and fluoroquinolone antibiotics given by mouth, injection or inhalation. The review incorporated the views of patients, healthcare professionals and academics presented at EMA’s public hearing on fluoroquinolone and quinolone antibiotics in June 2018. Here is an excerpt from the press release of their findings:
EMA’s human medicines committee (CHMP) endorsed the recommendations of EMA’s safety committee (PRAC) and concluded that the marketing authorisation of medicines containing cinoxacin, flumequine, nalidixic acid, and pipemidic acid should be suspended. The CHMP confirmed that the use of the remaining fluoroquinolone antibiotics should be restricted. In addition, the prescribing information for healthcare professionals and information for patients will describe the disabling and potentially permanent side effects and advise patients to stop treatment with a fluoroquinolone antibiotic at the first sign of a side effect involving muscles, tendons or joints and the nervous system.

F. FDA Warnings. The U.S. Food and Drug Administration has issued a series of warnings over the last number of years regarding serious and potentially permanent adverse side effects of fluoroquinolones, including a ‘Black Box’ warning (its strongest warning possible) in 2008, which it has upgraded numerous times since. A summary of the warnings is below:
a. 2008 – increased risk of tendinitis and tendon rupture.
b. 2011 – fluoroquinolones may have neuromuscular blocking activity.
c. 2013 – the potential for irreversible peripheral neuropathy (serious nerve damage).
d. 2016 – disabling and potentially permanent serious side effects that can occur together which may involve the tendons, muscles, joints, nerves, and central nervous system.
e. 2018 (July) – may cause significant decreases in blood sugar, potentially resulting in coma, as well as certain mental health side effects, including disturbances in attention, disorientation, agitation, nervousness, memory impairment, and serious disturbances in mental abilities called delirium.
f. 2018 (December) – the risk of aortic aneurysm and dissection.
Fluoroquinolones are now deemed to be a ‘drug of last resort’ in the U.S for most infections. The clinical guidelines in Australia, whilst not quite as strong, clearly indicate that fluoroquinolones should be reserved for serious bacterial infections for which an alternative treatment is not available. The reality of over-prescription and lack of physician awareness of the side effects of fluoroquinolones indicate a significant disconnect between the official regulatory bodies and current medical practice.

G. Glutathione. Glutathione is an important antioxidant. It is comprised of three amino acids (cysteine, glutamic acid, and glycine) present in most mammalian tissue. Glutathione also acts as a free radical scavenger and a detoxifying agent. A 2011 study found that the fluoroquinolone antibiotic Ciprofloxacin causes a significant decrease in glutathione levels in the body (a 25.5% decrease in levels by the fifth day of treatment.) . The reduction of glutathione in the body caused by fluoroquinolones is likely to be a contributing factor to the oxidative stress (see ‘Oxidative Stress’ entry below) caused by fluoroquinolones. Tests conducted on rats also revealed administering Ciprofloxacin resulted in a significant decrease in glutathione content in the liver.

H. Heart Damage. Due to its collagen-depleting mechanism, fluoroquinolones can cause serious damage to the heart. The U.S FDA released a warning in December 2018, stating that patients should avoid fluoroquinolone antibiotics due to an increased risk of heart-vessel tears. ‘These tears,’ it stated, ‘called aortic dissections, or ruptures of an aortic aneurysm can lead to dangerous bleeding or even death’.

I. Income loss. One of the all-too frequent associated impacts of fluoroquinolone toxicity is the sufferer’s inability to continue in paid employment. There are many media and online stories where people share the devastating impact this drug has had, not just on their health, but on their family relationships, their livelihood and their ability to be financially independent. One such news story is footnoted here.

J. Johnson & Johnson. Johnson & Johnson’s Janssen Pharmaceuticals unit discontinued production of the fluoroquinolone antibiotic Levaquin in December 2017, amid growing concerns over the serious side effects and complications potentially associated with the use of fluoroquinolone antibiotics. Another likely reason for this discontinuation by Johnson & Johnson is due to its having lost millions of dollars in previous lawsuits over Levaquin, (including settling 845 lawsuits over Levaquin in 2012) . There are still hundreds of individuals waiting to have their cases heard over debilitating injuries caused by Levaquin and other fluoroquinolones, which is another likely reason for Johnson & Johnson’s decision. Johnson & Johnson’s decision to cease manufacturing this drug does not constitute a product recall, with the drug still being available with the J&J brand until 2020 and generic versions of the drug continuing indefinitely at this stage.

K. Kidney Damage. Fluoroquinolone antibiotics can cause kidney damage including renal failure. A 2013 study found a twofold increased risk of acute kidney injury requiring hospital admission with the use of fluoroquinolone antibiotics among adult men.

L. Levaquin. Levaquin is the brand name of a type of fluoroquinolone antibiotic manufactured by Janssen Pharmaceutical (see ‘Johnson & Johnson’ entry above). The drug’s scientific name is levofloxacin. Levaquin has been the subject of hundreds of lawsuits by patients who have suffered debilitating side effects from this drug.

M. Mitochondrial Toxicity. The mitochondria are rod-shaped organelles that are the ‘power generators’ of cells, ‘turning sugars, fats and proteins that we eat, into forms of chemical energy that the body can use to carry on living’. Fluoroquinolones damage mitochondrial DNA, resulting in a range of disabling symptoms in sufferers, including pain, weakness and fatigue.

N. Nerve Damage. Many sufferers of fluoroquinolone toxicity syndrome experience nerve damage, often resulting in peripheral neuropathy. Peripheral neuropathy is a condition in which the nerves in the peripheral nervous system become damaged. Usually the disorder affects the nerves that provide sensation, which causes pain, tingling, and burning symptoms of the nerves affected, frequently, but not limited to, the hands and feet. The U.S. Food and Drug Administration enhanced its warnings of fluoroquinolone side effects in 2013 to include ‘the potential for irreversible peripheral neuropathy’.

O. Oxidative Stress. ‘Oxidative stress occurs when excess oxygen radicals are produced in cells, which could overwhelm the normal antioxidant capacity. [Oxidative stress can lead to damage of] proteins, lipids, and DNA, which could lead to cytotoxicity, genotoxicity, and even carcinogenesis when damaged (mutated) cells can proliferate.’ A scientific study conducted in 2011 demonstrated that fluoroquinolone antibiotics are a significant cause of oxidative stress, with tests revealing this stress was ‘greatest 5 days after exposure to ciprofloxacin and levofloxacin therapy, which indicates the formation of reactive oxygen species as in previous studies with fluoroquinolones. These results [were] further supported by [a] decrease in plasma antioxidant status by 77.6% and 50.5% for ciprofloxacin and levofloxacin respectively’24. They concluded their report with the finding that ‘[t]here was a considerable increase in lipid peroxide levels indicating an enormous oxidative stress’ in patients taking fluoroquinolones and suggested that increase in oxidative stress may be responsible for the pathological mechanism of tendinitis (see ‘Tendon Ruptures’ entry below).

P. Pain. Pain is often (but not always) the first symptom fluoroquinolone toxicity sufferers experience. This can occur after the first dose taken. The pain usually begins in the legs or feet before spreading to other parts of the body. The pain will often be constant and remain for months or years. Pain in joints, hands, feet, tendons and nerves (see ‘Nerve Damage’ entry above) is common, ranging in severity from a dull ache to, extreme, sharp, unbearable pain. Many case studies document patients living with extreme, ongoing pain that cannot be medically managed.

Q. Quinolones. Quinolones are an earlier generation of the current fluoroquinolone family of antibiotics (although quinolones are still in limited use). A fluorine atom was added to the quinolone’s central ring system, thus creating fluoroquinolones, which have proven to be more effective in disrupting bacterial DNA than the quinolone form of the antibiotic.

R. Relapse. Many sufferers of fluoroquinolone toxicity syndrome report (often multiple) relapses of their symptoms, sometimes years after the initial onset of their illness. This is likely due to the multi-system, cellular and oxidative-stress nature of this toxicity. Sometimes a relapse can be caused by a specific trigger, such as the subsequent use of NSAIDs (such as ibuprofen) or steroid medications.

S. Suicide. There have been thousands of reported cases of deaths linked to fluoroquinolone toxicity (over 6500 to the end of 2015 in the U.S alone). This number, however, does not include the large number of people who have taken their own lives after experiencing sudden and extreme mental health side effects from fluoroquinolones. A group of doctors wrote an article for the European Journal of Internal Medicine in which they report on the concerning number of suicides or attempted suicides by patients on fluoroquinolone antibiotics. They cite that in the United States, 40% of reported fluoroquinolone-related suicide events occurred within two weeks of taking fluoroquinolone medication. Many of these patients had no previous mental health issues.

T. Tendon Ruptures/Tendonitis. One of the most common adverse side effects of fluoroquinolones is tendon damage, including tendon ruptures, frequently to the Achilles tendon. This is due to a combination of factors, including fluoroquinolones being responsible for destroying collagen (collagen is a major component of tendons). A study in 2015 investigated the impact of fluoroquinolones on collagen and discovered that fluoroquinolones ‘were associated with almost a tripling of the risk of tendon ruptures—a recognised collagen-associated adverse event induced by these medications.’ Perhaps of even greater concern was their finding that ‘fluoroquinolones were associated with a similar increase in the risk of aortic aneurysms.’

U. Under-reporting. It is almost certain that fluoroquinolone toxicity is under-reported. Drug safety professionals estimate that only 10% of adverse events (across all drugs) are reported to the FDA every year, in part due to physicians having no requirement or incentive to report adverse reactions. It is highly likely that the rate of adverse reaction reporting for fluoroquinolone antibiotics is lower still, for the following reasons:
a. The noticeable symptoms of fluoroquinolone toxicity can take months to manifest, thus making it more likely that the patient does not connect their ‘new’ symptoms with a course of fluoroquinolone antibiotics they took previously.
b. Many medical practitioners are still unaware of, or refuse to acknowledge, the damage that fluoroquinolone antibiotics can cause. This is evidenced in the frequency with which these antibiotics are prescribed for uncomplicated (suspected) infections when safer alternatives are available. As one report states: ‘Despite these seemingly significant numbers and overwhelming reports from patients, physicians continue to prescribe fluoroquinolone antibiotics unsystematically, against US Food and Drug Administration recommendations. Thus, adverse reactions to fluoroquinolones are often not reported by physicians, nor by the patient themselves. Even though significant under-reporting is extremely likely, there are over 200,000 reported cases of adverse reactions to fluoroquinolone antibiotics in the U.S alone, tens of thousands of these being serious and over 6,000 reported deaths. 1,498 cases of adverse reactions to Ciprofloxacin have been submitted to Australia’s Therapeutic Goods Administration (up to 18 January 2019).

V. Vitamins and Minerals. There is no quick cure or treatment for fluoroquinolone toxicity. Healing plans usually focus on rest and a diet/supplement regime which aims to replenish those essential elements that have been depleted or damaged by the drug. One of the most important mineral supplements is magnesium. This is because fluoroquinolones deplete magnesium from the body and also because toxicity from fluoroquinolones is reduced by the supplementation of magnesium (as proven through tests conducted on both humans and rats).

W. Weakness and Fatigue. Alongside pain, muscle weakness and fatigue are often the first symptoms fluoroquinolone toxicity sufferers experience. The weakness is likely a result of the cellular damage caused by the drug, including damage to the mitochondria in the cells (see ‘Mitochondrial Toxicity’ entry above). As a consequence, many sufferers are (mis)diagnosed with CFS/ME (Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis).

X. The X Factor (the unknowns). Scientists and medical professionals are still discovering all the ways in which fluoroquinolones adversely affect the body and mind. Much is still unknown about the long-term impacts of this drug. One of the more frightening discoveries in recent years is the likelihood that fluoroquinolone toxicity sufferers are at a significantly higher risk of developing Parkinson’s Disease and Alzheimer’s due to the long-term oxidative stress caused by this drug and by the damage it causes to the cells’ mitochondria (see ‘Oxidative Stress’ and ‘Mitochondrial Toxicity’ entries above). In 2014, A U.S. medical practitioner, Charles Bennett, who has conducted a great deal of research on fluoroquinolone toxicity, filed a citizen’s petition with the FDA seeking to expand the black box warning to include mitochondrial toxicity as one of its side effects, with the concern that it can lead to Parkinson’s Disease and Alzheimer’s.

Y. Years. People who suffer from fluoroquinolone toxicity often take years to recover, whilst others experience little improvement in their symptoms, even years after first suffering toxicity (as evidenced by some of the speakers at the EMA public hearing in June 2018).

Z. ZZZZ (sleep). The European Medicines Agency’s 2018 public hearing and investigation into fluoroquinolones concluded that sleep problems (including nightmares and insomnia) were among the many long-term side effects of fluoroquinolone toxicity. Sadly, much of the medical profession world-wide seems to have no trouble being asleep to the dangers of fluoroquinolones, with doctors continuing to prescribe this drug in the millions each year for uncomplicated health conditions where safer, as effective antibiotics are available. Patients also continue to report having been prescribed fluoroquinolones without being given any information about the risk of serious, potentially permanent, side effects.

References:

  1. The Marshall Protocol Knowledge Base. “Fluoroquinolone Antibiotics”: https://mpkb.org/home/othertreatments/antibacterials/fluoroquinolones
  2. Arentz Law Group. “Cipro Lawsuit Alleges Bayer Actively Concealed Irreversible Peripheral Neuropathy Risks.” https://arentzlaw.com/defective-drug/cipro-lawsuit-peripheral-neuropathy/
  3. Dr Joseph Mercola. “Antibiotic Alert: The Drug the Doctor Ordered Could Cause Deadly Side Effects.”
    https://articles.mercola.com/sites/articles/archive/2012/10/20/fluoroquinolones-side-effects.aspx
  4. Oncology Practice. “Fluoroquinolone-related neuropsychiatric and mitochondrial toxicity: a collaborative investigation by scientists and members of a social network.” https://www.ncbi.nlm.nih.gov/pubmed/26955658
  5. Nucleic Acids Research. “Ciprofloxacin impairs mitochondrial DNA replication initiation through inhibition of Topoisomerase-2.” https://academic.oup.com/nar/article/46/18/9625/5088042
  6. European Medicines Agency. “Quinolone- and fluoroquinolone-containing medicinal products – European Commission Final Decision.” https://www.ema.europa.eu/en/medicines/human/referrals/
    quinolone-fluoroquinolone-containing-medicinal-products
  7. FDA Drug Safety Communication. “FDA updates warnings for oral and injectable fluoroquinolone antibiotics due to disabling side effects.” https://www.fda.gov/drugs/drugsafety/ucm511530.htm
  8. U.S. Food and Drug Administration. “FDA advises restricting fluoroquinolone antibiotic use for certain uncomplicated infections”. https://www.fda.gov/Drugs/DrugSafety/ucm500143.htm
  9. U.S National Library of Medicine. “Glutathione.” https://pubchem.ncbi.nlm.nih.gov/compound/glutathione
  10. Journal of Young Pharmacists. “Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249743/
  11. Drug and Chemical Toxicology. “Ciprofloxacin‐Induced Glutathione Redox Status Alterations in Rat Tissues.” https://www.tandfonline.com/doi/abs/10.1081/DCT-120037504?journalCode=idct20
  12. Medical Xpress. “Certain antibiotics tied to deadly heart vessel tears: FDA.”
    https://medicalxpress.com/news/2018-12-antibiotics-tied-deadly-heart-vessel.html
  13. Al Jazeera. “Left paralysed from Fluoroquinolone antibiotic toxicity.”
    https://www.aljazeera.com/indepth/features/2017/09/left-paralysed-fluoroquinolone-antibiotic-toxicity-170919135407632.html
  14. RX Injury Help. “Janssen Discontinued Levaquin Production as Concerns Over Fluoroquinolone Side Effects Grow.” https://www.rxinjuryhelp.com/news/2018/07/18/janssen-discontinued-levaquin-production-as-concerns-over-fluoroquinolone-side-effects-grew/
  15. Drug Injury Law: Medical and Legal Information. “Johnson & Johnson settles 845 Levaquin Lawsuits.” https://www.drug-injury.com/drug_injury/2012/11/johnson-johnson-settles-845-levaquin-lawsuits.html
  16. Arentz Law Group. “Levaquin pulled from market to avoid lawsuit.”
    https://arentzlaw.com/defective-drug/jj-stops-levaquin-sales/
  17. Canadian Medical Association Journal. “Risk of acute kidney injury associated with the use of fluoroquinolones.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708027/
  18. Thomas J Henry Law. “Johnson & Johnson Settles Levaquin Lawsuits”. https://thomasjhenrylaw.com/blog/dangerous-drugs-devices/johnson-johnson-settles-levaquin-lawsuits/
  19. Mitochondrial Biology Unit. http://www.mrc-mbu.cam.ac.uk/what-are-mitochondria
  20. Oncology Practice. “Fluoroquinolone-related neuropsychiatric and mitochondrial toxicity: a collaborative investigation by scientists and members of a social network.” https://www.mdedge.com/hematology-oncology/article/106661/patient-survivor-care/fluoroquinolone-related-neuropsychiatric
  21. Journal of Investigative Medicines: “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528905/
  22. Medicine Net. “Peripheral Neuropathy Causes, Symptoms, and Treatment Medications.” https://www.medicinenet.com/peripheral_neuropathy/article.htm#peripheral_neuropathy_definition_and_facts
  23. Science Direct. “Oxidative Stress.” https://www.sciencedirect.com/topics/neuroscience/oxidative-stress
  24. Journal of Young Pharmacists: “Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249743/
  25. Journal of Pain & Palliative Care Pharmacotherapy. “Intractable Acute Pain Related to Fluoroquinolone-Induced Peripheral Neuropathy.” https://www.ncbi.nlm.nih.gov/pubmed/28358229
  26. US National Library of Medicine. “Fluoroquinolone-induced serious, persistent, multisymptom adverse effects.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4600819/
  27. US National Library of Medicine. “Fluoroquinolones interactions with nonsteroidal anti-inflammatory drugs.” https://www.ncbi.nlm.nih.gov/pubmed/15176310
  28. European Medicines Agency. “EMA public hearing on quinolones and fluoroquinolones.” https://www.ema.europa.eu/en/documents/other/public-hearing-quinolone-fluoroquinolone-written-interventions_en.pdf
  29. Nature. “When antibiotics turn toxic.” https://www.nature.com/articles/d41586-018-03267-5
  30. European Journal of Internal Medicine. “Fluoroquinolone-associated suicide.” https://www.ejinme.com/article/S0953-6205(18)30284-X/fulltext
  31. The Journal of Clinical and Aesthetic Dermatology. “The Risk of Fluoroquinolone-induced Tendinopathy and Tendon Rupture.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921747/
  32. BMJ Journals. “Fluoroquinolones and collagen associated severe adverse events: a longitudinal cohort study.” https://bmjopen.bmj.com/content/5/11/e010077
  33. PSQH: Patient Safety and Quality Healthcare. “A Closer Look at FDA’s Adverse Event Reporting System.” https://www.psqh.com/analysis/a-closer-look-at-fdas-adverse-event-reporting-system/
  34. Oxidative Medicine and Cellular Longevity. “Treatment of the Fluoroquinolone-Associated Disability: The Pathobiochemical Implications.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5632915/
  35. Journal of Investigative Medicine. “Permanent Peripheral Neuropathy: A Case Report on a Rare but Serious Debilitating Side-Effect of Fluoroquinolone Administration.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4528905/
  36. Therapeutic Goods Administration (Australia) Database of Adverse Event Notifications – medicines https://apps.tga.gov.au/PROD/DAEN/daen-report.aspx
  37. American Society for Microbiology. “Diminished Ciprofloxacin-Induced Chondrotoxicity by Supplementation with Magnesium and Vitamin E in Immature Rats.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1803142/
  38. ME Association UK. “Update: MHRA issues new restrictions and precautions for Fluoroquinolone antibiotics 29 March.” https://www.meassociation.org.uk/2019/03/update-mhra-restrictions-and-precautions-for-fluoroquinolone-antibiotics-28-march-2019/
  39. CBS Chicago. “Safety Advocate: Powerful Antibiotics Being Overprescribed.”
    https://chicago.cbslocal.com/2015/03/11/safety-advocate-powerful-antibiotics-being-overprescribed/
  40. European Medicines Agency. “Public Hearing on quinolone and fluoroquinolone antibiotics” .
    https://www.youtube.com/watch?v=1vao8o5NGUc
  41. European Medicines Agency. “Disabling and potentially permanent side effects lead to suspension or restrictions of quinolone and fluoroquinolone antibiotics.” https://www.ema.europa.eu/en/news/disabling-potentially-permanent-side-effects-lead-suspension-restrictions-quinolone-fluoroquinolone

******

The Term “Flox”

When I tell people about this site they often ask me what the terms flox, floxed, and floxie mean. I am not a lexicographer by any stretch, and these are not official definitions, but here are my answers:

Flox (noun): A shorthand term for the multi-symptom, chronic illnesses brought on by fluoroquinolone antibiotics that are referred to as Fluoroquinolone toxicity or Fluoroquinolone Associated Disability (FQAD).

Flox (verb): To be afflicted with fluoroquinolone toxicity or FQAD. The term “flox” is typically used in the past tense as “floxed,” as in, “I was floxed by cipro in 2011.”

Floxie (noun): A person who suffers from fluoroquinolone toxicity or FQAD.

The term “flox” comes from the names of the fluroquinolone antibiotics. All the fluoroquinolones contain “flox” in their names – ciproFLOXacin, levoFLOXacin, moxiFLOXacin, gatiFLOXacin, oFLOXacin, etc. As communities of victims of these drugs formed, people found it easier to say, “I’ve been floxed” or, “I’m a floxie” than to say, “I am going though a multi-symptom illness brought on by fluoroquinolone antibiotics.” Perhaps the term “FQAD” would have been just as easy to say as “flox,” but “flox” preceded “FQAD” by more than a decade and the term has stuck.

The earliest written record of the term “flox” that I can find is in Stephen Fried’s 1998 bestselling book, “Bitter Pills: Inside the Hazardous World of Legal Drugs.” In it, Fried describes his wife’s severe, primarily psychiatric, adverse reaction to ofloxacin, a fluoroquinolone antibiotic. Fried noted that the community of people who had been hurt by this class of drugs referred to themselves as “floxies” and spoke of their condition as being “floxed.” (EDIT/NOTE – Please see Mr. Fried’s comment below for correct information about the early usage of the term “flox.)

Most journal, and even news, articles don’t use the terms “flox” or “floxie.” They typically refer to the constellation of symptoms that “floxies” deal with as “adverse reactions to fluoroquinolone antibiotics” or they don’t refer to the syndrome as a whole at all, rather, they’ll list the symptoms that their featured victim suffers from, and then note that the victim attributes those symptoms to fluoroquinolone antibiotics. A couple news articles have used the term FQAD, as it was coined by the FDA, and is seen as a bit more official than “flox.”

In online communities new terms are often coined, and they gain traction in those communities. “Flox” is one of those terms. The terms “flox” and “floxie” are primarily used on the internet in support groups for victims of fluoroquinolones. The biggest Facebook group for victims of fluoroquinolones is The Fluoroquinolone Toxicity Group, and their url is https://www.facebook.com/groups/floxies/ (note the “floxies” in the url – it’s easier than https://www.facebook.com/groups/FluoroquinoloneToxicityGroup). Additionally, this site is one of the more popular blogs about fluoroquinolones, and it’s called Floxie Hope. The terms “flox” and “floxie” are used throughout blogs and support groups dedicated to fluoroquinolone toxicity.

People within the “floxie” groups and communities know these terms and what they mean and imply. The people in the “floxie” community know when someone says that they are “severely floxed” that it means that person is suffering from more symptoms than they can count or name and that they are likely bed or house bound as a result of their fluoroquinolone-induced injuries. Of course, everyone’s experience is different, and people are encouraged in these communities to further describe their pain and their experience, but it’s far easier to say, “I’m severely floxed” than it is to list dozens of symptoms then say that those symptoms were caused by fluoroquinolone antibiotics.

Some people really hate the terms “flox” and they particularly hate the term “floxie.” They see the terms as silly and flippant, and they see it as disrespectful to those who are suffering from fluoroquinolone toxicity. Fluoroquinolone toxicity IS a serious and severe illness, and it should be taken seriously by doctors, patients, regulators, and everyone else. It is not a joke, or something to be taken lightly. It is a life-altering, often disabling, syndrome. Fluoroquinolones have maimed and killed people, and fluoroquinolone toxicity should be taken as seriously as other multi-symptom, chronic, mysterious illnesses like M.S., Lupus, Lyme Disease, M.E./CFS, etc.

Neither “flox” nor “floxie” are particularly serious terms, and I empathize, and even agree with, those who see it as minimizing the seriousness and severity of fluoroquinolone toxicity.

But… sometimes terms just stick. Both flox and floxie are terms that have resonated with people in the community, and they have stuck. Many people find it easier to describe their illness as being “floxed” than to describe it any other way. It resonates with people more to say, “floxies unite!” than it does to say, “victims of fluoroquinolone antibiotics come together!” For the purposes that the the terms are used, they work well for expressing what people want and need to say. I don’t think that anyone who uses the terms “flox” or “floxie” mean any disrespect to the illness or the people suffering from it. In fact, most of the people using the terms are either victims of fluoroquinolones or those who love a victim of fluoroquinolones.

I am writing this post on a site called Floxie Hope, so I am, of course, somewhat biased. I like the term “floxie” and it has become part of my brand (if you can say that a blog has a brand). I think that the term sticks in people’s minds and it resonates with them. There is an understanding of what it means–at least within our community. The naming of this site was somewhat accidental–I was trying to figure out how to create a web site and this was supposed to be my place-holder site until I figured out the mechanics of blogging, then I was supposed to think of a more well thought out name for the official site, but then this site got rolling while named Floxie Hope, and 5.5 years later, it’s still going and here we are.

I hear the people who think that “flox” and “floxie” aren’t serious enough terms to connote the severity of fluoroquinolone toxicity. In a lot of ways, I think they’re right. BUT, I don’t think that the term has held this community back. We have made a lot of progress over the last decade. We still have a lot of work to do, but millions of people have become aware of fluoroquinolone toxicity and fluoroquinolone dangers over the last decade, and part of the momentum of this community is our shared language and our shared understanding of terms like “flox.”

The terms “flox” and “floxie” are ingrained in our community, and they are likely here to stay as long as fluoroquinolones are hurting people (I hope for the extinction of the term through the strict limiting of the drugs – but we’re a long way from that and it’s certainly a matter for another post). I think that the terms are doing more good (through ease of communication, bringing people together, and having terms that resonate with many) than harm.

I am hopeful that the terms “flox” and “floxie” will someday be so well understood and accepted that they make it into the dictionary. The only criteria for words making it into the dictionary is that they appear in edited text, so I actually hope that more journalists start using the terms “flox” and “floxie” in their articles. Having the terms “flox” and “floxie” in the dictionary would be wonderfully validating, and it would help to increase awareness of fluoroquinolone toxicity.

When I describe this site, I often try to tell the back-story and give the long explanation of how I was hurt by ciprofloxacin. Sometimes the person who I’m talking to says something like, “Oh, you’ve been floxed – that happened to my sister-in-law.” The word is getting out, and the terms “flox” and “floxie” are spreading. It’s a good thing. Awareness is one of the most important steps toward change, and short, easy-to-remember terms like “flox” and “floxie” help people to become aware of the dangers of fluoroquinolones.

*****

NY Resolution to Heal My Gut

Seven years after I got floxed, and 5.5 years since I wrote my recovery story, I am still doing well. I am working at a job that I enjoy, I am in a good relationship, I can hike, bike, swim, and otherwise move my body, I have my reading comprehension and intellect back, my energy level is decent, and my autonomic nervous system generally operates as it’s supposed to. I feel good, and I’m living a good life. As I’ve said many times before, I hope that my recovery gives you hope for your healing.

With it noted that I’m generally healed, and that I feel good in most areas of my life, I’m going to confess that…

My gut is a mess, and I am worried about it.

I have no idea whether my gut issues are from being floxed or not. GI tract problems weren’t part of my initial floxing–I didn’t have any gut issues until recently. But in the last year(ish), my gut has started to have… issues. Unfortunately, there is no way to describe GI issues without describing bowel movements, so here goes – I haven’t had a normal textured poo in ages. It has been at least a year. TMI? Sorry.

Poorly formed stools are definitely a sign of inflammation and other gut issues, and, despite the fact that I feel generally okay, I’m concerned about my gut health.

I want a gut that doesn’t hurt every day, that forms healthy-textured poos, and that I don’t worry about. I don’t want to be concerned that I’m developing IBS, or crohn’s disease, or that I have c-diff, or anything else. I’m guessing that I don’t have any of those things, and that I just have an inflamed gut, but I don’t want that either. I want a healthy, happy, healed gut that feels good and operates entirely normally. I don’t think that’s too much to ask for. I also think that my gut is my responsibility, and that no one other than me can do anything about MY gut health.

It’s December 28th as I write this, and the beginning of the new year seems as good a time as any to commit to healing my gut. Here are some of the things I plan to do to heal my gut in 2019 (public accountability is good, right?):

Clean up my diet

When I first got floxed I ate only meat and veggies. I was scared of most foods, and I ended up losing weight and feeling worn-down because I wasn’t ingesting enough calories. After I got over the fear of food, I added fruits and other good things to my diet, and ended up eating as outlined in The Floxie Food Guide. But, after a while of feeling better, I stopped restricting my diet entirely. I didn’t eat much processed food because I’ve never liked processed food, but I ate whatever I wanted. Perhaps my GI issues are the result of my “anything goes” diet (or maybe my GI issues stem from something else like mold in my house or fluoride in my city’s water or a parasite – it’s hard to tell). Anyhow, it’s time to restrict my diet again with the hope of calming the inflammation in my intestines.

Step 1: Give up gluten. My husband has been on a bread-baking kick lately, so this will take some willpower, but it has helped so many people, and it seems like a logical first step, so, I’m going to go gluten-free and see if that helps.

Step 2: Give up legumes. I like beans, but they make me feel like crap.

Step 3: Limit dairy. I love dairy too much to say that I’m going to give it up, but I’m going to try to be cognizant of how much I eat and how it makes me feel and limit it.

I want to be able to sustain these changes, so these are the only things I’m going to do at first. If they don’t work, I’ll move on to a more restricted protocol – probably something close to The Wahls Protocol because it has helped so many fellow “floxies.”

I’ve noticed that oatmeal makes me feel better generally, so I’m going to eat more oatmeal. I’ve also noticed that spicy food tends to make me feel worse, so I’m going to limit them even though many spices are supposed to be anti-inflammatory.

Cut the coffee and alcohol

This is a no-brainer, right? No explanation is necessary as to why these need to go in order for me to heal my gut. It’s hard though, so, here’s my public accountability.

Note that the coffee I drink is decaf. I haven’t been able to tolerate caffeinated coffee post-flox.

I really like both coffee and alcohol, and this is going to be tough. I’m only committing to cutting down on them, not to completely giving up either, but I can commit to cutting the coffee by 50% and the alcohol by 80%.

Eat probiotic foods

Sauerkraut and kimchi, here I come. Luckily, I like both.

Meditate, breathing exercises, eat mindfully, and otherwise stimulate the vagus nerve to heal the gut

Our guts are connected to our brains via the vagus nerve, and stimulating and toning the vagus nerve through meditating, breathing exercises, mindfulness, and other activities, can heal both the gut and the brain.

Here is an interesting post about how a guy healed his IBS through stimulating his vagus nerve through gargling: How I Cured My Irritable Bowel Syndrome.

As I was going through the early stages of my fluoroquinolone toxicity journey I was really good about meditating, doing breathing exercises, going to the chiropractor and/or acupuncturist, and doing other things that stimulated my vagus nerve. I think that these things helped me to heal. They were part of my healing journey, and I recommend them to others because they are healing for the body, mind, and spirit, and because they stimulate the vagus nerve and trigger the release of acetylcholine. Like watching my diet, conscientiously doing activities that stimulated my vagus nerve fell to the wayside as I healed. I felt good, so I didn’t need to do breathing exercises to feel better. But, I think that all the vagus nerve healing exercises were helpful for my gut when I was doing them, and that they’ll be helpful for my gut if I do them again.

Shoot, I wrote a book about healing the vagus nerve – I should make the time to practice what I preach.

Step 1: Meditate daily

Step 2: Swim weekly – it forces breathing exercises, and movement is good for the vagus nerve.

Step 3: Eat mindfully

Step 4: Gargle and/or hum daily

 

Those are my resolutions, and I hope that they result in a happier, healthier gut.

I’m open to suggestions for gut healing. Please feel free to comment below to let me know what has helped you to heal your gut. As you may gather from the post above, I am not willing to go on a super-restrictive diet unless/until all else fails, but I am willing to hear suggestions. I’m also open to trying supplements that heal the gut including aloe juice, collagen, bone broth, probiotic supplements, etc. If you have any recommendations based on personal experience with gut-healing supplements, please comment below.

Whenever someone asks in the forums about how to heal from fluoroquinolone toxicity, someone always answers, “heal your gut.” They’re right, of course–but it’s easier said than done. There are people in the “floxie” community who are much more better about having a “clean” diet than I am who still struggle with GI issues and other symptoms of fluoroquinolone toxicity. I’m hopeful that my modified “clean-ish” diet will help my gut to heal, and that the other things mentioned above help too. I want to acknowledge though, that “healing the gut” is not simple and that there isn’t a single answer for how to do it. I’m hopeful that the steps noted above will help me, and that I’ll have a healthier, happier gut in 2019 than I did in 2018.

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