Cipro

Adverse Drug Reactions (ADRs): We’re ALL at Risk

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I’m lying in my bed, with my arms and legs straight out. I figured out pretty fast that any stress whatsoever on the tendons, makes things worse for days, weeks even. “Stress” includes not only trying to walk or use my arms or legs for any reason at all, but also simply bending my arms, or my knees, or my fingers, in one position for too long. What’s “too long”?  Maybe 3-5 minutes or so. I can’t use crutches or a wheelchair, because both of those involve use of my arms and shoulders and hands, which are also out of commission. I can’t type or use the computer, because every tendon in my fingers, hands, wrists, and arms are affected and severely painful. I can’t hold up a book to read, because the weight of the book is too much and I can’t bend my arms, without increasing the tendon pain. The weight of the sheets on my toes causes severe pain in the tendons there. There must be tendons around the eye muscles too, because it hurts simply to move my eyes. So I lay there in my bed, with my arms and legs flat out, with my head still and my eyes closed, waiting. Waiting for what, I’m not sure. It’s hard to believe that I went jogging and bike riding and swimming only a few days ago. I’m also in shock. How in the world could a simple antibiotic that I took for a simple UTI do this to me?

My Journey into the Frustrating World of ADR’s Begins

In March 2010 I took the antibiotic Ciprofloxacin for a simple UTI, and within days became one of the millions of people in this country who experience an Adverse Drug Reaction (ADR) every year to a pharmaceutical drug that is deemed “safe” for use. My adverse reaction, as extreme as it was, unfortunately is not as “rare” as the public is led to believe. It turns out there were tens of thousands of other people, and possibly many times more that, also suffering from the same and similar reactions as I was as a result of this class of very popular antibiotics. There were no “Black Box Warnings” on my drug insert, and the warnings that were listed on the insert didn’t even remotely accurately describe what I was going through then, and continue to go through today.

I’ve been disabled ever since, often times going months without leaving the house, or even getting out of bed, as a result of those few pills. As I lay there waiting, I didn’t know if I was waiting to die or to live. With no known treatment, cure, or detox, or even any idea of why this happens in the first place to some of us, there was nothing left to do but wait.  Whatever was known about these reactions came from the victims themselves, observations painstakingly accumulated over time, sharing information that was now available on the internet. Pharma, the FDA, and the medical and pharmacy professions were noticeably and conveniently absent in having any knowledge, concern, clue, or curiosity about these reactions and why this happens in some people, or what to do about it. Their role in all this apparently ended the minute I took the drug.

I’ve had plenty of time to lay around and think about things in the past five years, given that I can’t do much else.  And understandably, I’m not too happy about this situation. It didn’t take me too long to figure out that my life, or what was left of it, was simply going to be a nameless, faceless, long lost forgotten statistic when it came to my ADR. There was no help on the way for me from the medical profession, the FDA, or Pharma to help me with my ADR, and as far as I could tell, absolutely no interest in learning anything from it by any of these parties either. And if there was one thing that became quite clear, it’s that everything was skewed in everyone else’s favor but mine when it came to my ADR. My physicians, pharmacists, the FDA, and of course Pharma, didn’t want to even acknowledge my ADR due to culpability and liability issues – which meant none of the numerous physicians I saw even bothered to report my ADR to anyone anywhere or the FDA. Without this acknowledgement, insurance companies didn’t want to pay for any “excessive testing” outside of the basic “Top 40 Diagnoses” screening tests for a non-existent problem. With “nothing wrong” on paper, I was denied any form of disability payments and probably considered to be a hypochondriac and/or malingerer trying to commit disability fraud. Even the legal profession, as hungry as they are for business, wasn’t interested in me once they found out I took the generic, since there is no legal recourse available with generic drugs. Everyone else in this chain of events walked away from my ADR unscathed, except, of course, me. I’m the one stuck living with it every minute of every day, with no assistance, and no end in sight. I’m the one scouring the internet, reading everything I can about my symptoms, reviewing the available research, paying for my own medical testing, looking for something, anything that will give a clue as to what this drug did to me and how to fix it.

The only other thing I can say about this scenario is that I’m actually not alone in my frustration and anger about this. There are millions of people out there who have been harmed by a pharmaceutical drug, vaccine, or medical device, in the same boat I am. Most of us have felt this same sense of abandonment by “the system”. Each one of us does the best we can, trying to figure out how to pick up the pieces of a life destroyed by a pharmaceutical prescribed to us by the medical profession, and deemed “safe” for use by Pharma and the FDA.

We’re All Sitting Ducks, Sacrificial Lambs, and Play Russian Roulette When it Comes to ADR’s

Several issues have become quite clear to me since I got hit with my ADR. First, is that for the most part, everyone, from Pharma to physicians and pharmacists, to end consumers like you and me, accept that ADR’s are a part of the deal. A lot of rules and regulations are in place in a supposed effort to ensure that a pharmaceutical is safe for “most” of the population. And therein lies the unspoken fact. At the end of the day, no matter how much effort has been put into safety, it’s accepted that there will always be some people that will react negatively to a drug. There’s an implicit acceptance, regardless of how unpalatable it might be, that “some always have to be sacrificed for the greater good”. We just hope that sacrificial lamb won’t be us or those we love.

Secondly, is that pharmaceutical use, and their ADR’s, are here to stay. In the US, nearly 70% of the population is on one prescription drug, more than 50% are on two, and 20% are actually on five or more prescription medications.  Between 1990 and 2008, U.S. spending on prescription drugs increased from $40 billion to $234 billion. And this doesn’t even include all the over the counter meds. As a society, “Just Say No” has never worked for any drug, and that includes legal pharmaceuticals. Increasing right along with this pharmaceutical epidemic, are the “serious and fatal event” ADR’s, which have quadrupled in the past decade, even by the woefully inaccurate and under reported FDA records. Every single person reading this is at risk for experiencing one or more ADR’s in their lifetime. These ADR’s may be mild and transient, or severe, disabling, and long term or lifelong. They might even be those “fatal events” the fast talking monologues on the drug commercials always warn you about. The point is, no one reading this is safe or exempt from them.  Even people who are very “anti-Pharma” may find themselves on the operating table in the ER someday, being given any number of pharmaceuticals without the opportunity for “informed consent”. We are all at risk, and basically sitting ducks when it comes to ADR’s. I rarely took any medications or supplements, and had only taken antibiotics a few times in the first 50 years of my life. Despite that, I let my guard down once — it only took a few pills, and there was no going back from that mistake. I read the drug insert carefully, which talked about how a little transient mild nausea or GI upset might be the worst ADR, and further on down, mentioned “if you develop a pain in your Achilles tendon, call your doctor”. There was no hint in these warnings that these symptoms could be so extreme, permanent, disabling, and that “my doctor” had never heard of it and had no clue what to do about it either.

Third, is that pharmaceutical companies of course want to minimize, downplay, and outright deny ADR’s because they don’t want to open themselves up to culpability and liability issues and lose profits. From the limited “safety studies” that Pharma does on a drug pre-market, to “publishing bias” of only publishing research studies with data in their favor, to minimizing and hiding the adverse effects as they sell their products to the medical profession and us, Pharma does all they can to get a drug to market and profit from it. Once the drug gets to market, the big experiment occurs, as the drug is unleashed en masse on the general population. For those taking the drug, it’s essentially a game of Russian Roulette, no matter how “informed” you are. At that point in time, if things go wrong, it usually takes tens of thousands, hundreds of thousands, or millions of people suffering severe ADR’s before any action, if any, is taken (think Thalidomide, DES, and more recently, Vioxx). YOUR life may be wrecked, but it’s no big deal to Pharma, the FDA, or even your doctors. If you experience a severe ADR, their lives will continue on, while your life becomes just another long lost statistic, simply considered the “cost of doing business”.

Pharma: The Untouchable Behemoth

It can seem pretty hopeless at times. Physicians and pharmacists get their extremely biased information on the drugs they prescribe directly from Pharma via Pharmaceutical Sales Representatives. These reps get more training in marketing and selling, than in knowing anything about the products they’re selling. If the more curious and ethical physicians actually do take the time to look up the research, they will see biased research studies funded by Pharma, all minimizing the risks while highlighting the benefits. The FDA, who relies on Pharma to do the research studies and present the findings on safety and efficacy of drugs, as well as relies on Pharma as a large source of funding for their own organization, is equally in the dark and basically impotent, as they now see Pharma as their main client to serve, and not the public. And we, the people?  We’re the sacrificial lambs, the sitting ducks, and the true massive post surveillant “research study” when we play Russian Roulette with safety and efficacy of any drug Pharma puts out. The icing on the cake for Pharma is that they can laugh all the way to the bank, no matter how many people are harmed, in the meantime. If, despite Pharma’s best attempts, a drug indeed is found to be unsafe, their main goal is to sell the hell out of it to keep bringing in profits until they are absolutely and overwhelmingly forced to remove it from the market.

This is nothing really new. If you live long enough, or read history, you will see the same old story over and over again, whether in the pharmaceutical industry or any other industry. And if you think your doctor or the medical profession is any smarter than the rest of us, think again. As I discussed here, in another writing:

“My own mother was “prescribed” cigarettes – yes, that’s right – as part of her “prenatal care”, she was told to start smoking by her doctor while pregnant with my younger sister “to prevent hemorrhoids”.  We can laugh, or be aghast now at such a notion, but an entire generation, including the medical profession at the time, was repeatedly brainwashed by the corporations manufacturing these products, and they would leave no stone unturned in promoting the “health and safety” of their products for the sole interest of their own profits.”  (See:  here, and here.  And for anyone wondering, the ‘science’ behind this is that nicotine constricts blood vessels.  And yes, this is exactly how my mother started smoking at age 32).

I provide this example simply to highlight the fact that medical professionals are subject to the same corporate and cultural forces that we all are.  Drugs that would never be blithely and indiscriminately prescribed today, such as Thalidomide, DES, Vioxx, and many others were routinely prescribed by physicians in the not too distant past, and this apparently includes “cigarettes” as well. The point being, is the drug your doctor prescribing you today the result of a judicious, prudent, and well thought out approach deemed absolutely necessary for your health?  Or is it simply the latest fad promoted by Pharma, the next big blockbuster drug for their coffers, being offered you even when safer, less expensive, or better alternatives may exist?

“Your doctor” is subject to the same forces everyone else is, and they happen to be a very important target for Pharma in particular.  Most physicians are honorable, trying to do the best they can with the information they have, but the fact is, they might not know any more than you do if what they’re selling (prescribing) you is a necessary and lifesaving drug, or a ‘cigarette’ of a drug. It turns out, when it came to my particular ADR, plenty of medical professionals have been hit and suffer from the same ADR’s. I sure wish I had known that before I took the drug, because now I’m one of them.

The odds are overwhelmingly in Pharma’s favor and against us.  And despite everything I’ve written, I’m not really “anti-pharmaceutical”.  I’m well aware pharmaceuticals and modern medicine have helped and saved many lives. I happen to love both science and medicine, and I’m a big believer in using the fruits of ethical, curiosity-driven science and medicine in its truest, most honorable and noble form — to improve the health and welfare of individuals and society as a whole. The problem is, that’s not a description of current day Pharma. Phrases more apt to come to mind with the word “Pharma” now include:  Corporate Greed, Profits at All Costs, America’s legal Drug Cartel, White Collar Drug Dealers, and  “Pharmageddon”. The medical profession is allowing themselves to be reduced to Pharma’s “drug pushers”, pushing pills for everything and everybody even if they’re not necessary or downright dangerous, with drugs as the first and sole option offered even when other options such as healthy lifestyle changes can help.

Given these odds, is there anything we can do to protect ourselves? Is there anything we can do to demand change?

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Photo by Jessica Tan on Unsplash

This article was first published on June 8, 2015.

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The Fluoroquinolone Time Bomb – Answers in the Mitochondria

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Two of the more perplexing features of Fluoroquinolone Toxicity (an adverse reaction to a fluoroquinolone antibiotic – Cipro/Ciprofloxacin, Levaquin/Levofloxacin, Avelox/Moxifloxacin or Floxin/Ofloxacin) are delayed reactions and tolerance thresholds. Both of these features of Fluoroquinolone Toxicity can be explained by noting that fluoroquinolones have been shown to damage mitochondria and cause oxidative stress, and that delayed onset of a disease state, as well as tolerance thresholds, are features of illnesses brought on by pharmaceutical induced mitochondrial damage and oxidative stress.

Delayed Reactions and Tolerance Thresholds with Fluoroquinolone Reactions

By “delayed reactions” I mean that adverse reactions to fluoroquinolones can occur weeks, months or even years after administration of the fluoroquinolone has stopped.  For the lawsuit filed by Public Citizen on behalf of patients who tore or ruptured tendons after taking a fluoroquinolone, (a suit that prompted the addition of the black box warning on all orally and IV administered fluoroquinolones) notes that “Fluoroquinolones, including CIPRO®, are associated with an increased risk of tendinitis and tendon rupture in all ages. This risk is further increased in older patients usually over 60 years of age, in patients taking corticosteroid drugs, and in patients with kidney, heart or lung transplants”. Tendon tears and ruptures that occurred within one year of the patient taking the fluoroquinolone were accepted as being related to the patient’s fluoroquinolone use. Patient reports have noted that new adverse symptoms of fluoroquinolone toxicity have occurred years after administration of the fluoroquinolone has ceased.

Many patients also experience a tolerance threshold for fluoroquinolone use.  A patient can tolerate fluoroquinolones well, experiencing few or no side-effects, until his or her threshold is reached.  After the patient’s tolerance threshold is reached, multisymptom systemic illness ensues. This patient’s story, found on the Fluoroquinolone Wall of Pain, illustrates the issue of tolerance thresholds:

On April 15, 2013 I was prescribed Avelox. I had been on this drug many times for chronic sinus infections. This time was different. Within 10 minutes of the first dose I went into anaphylaxis. I stopped breathing, had numerous convulsions and two grand Mal seizures. Since that day I have suffered with seizures, convulsions, tremors, debilitating fatigue, muscle weakness, vision loss, severe neuropathic pain, vomiting, nausea, lack of appetite, tendon, and vein problems.

This patient tolerated Avelox (moxifloxacin – a fluoroquinolone) well until her tolerance threshold was reached. Once her tolerance threshold was reached, she experienced multi-symptom systemic illness.

I personally experienced both a delayed reaction to Cipro/Ciprofloxacin (also a fluoroquinolone) and a tolerance threshold for it. I took 7 500-milligram pills of Cipro in 2009 without notable incident. I was even able to hike the entire 500-mile Colorado Trail in 2010 (no peripheral neuropathy or weakness were present at that time). When I took 7 more 500-milligram pills in 2011, I experienced a severe adverse reaction that began two full weeks after I was done taking the pills. I experienced multiple musculoskeletal (I couldn’t walk more than a block) and nervous system symptoms (I lost my memory and reading comprehension), and I would describe the reaction as feeling like a bomb had gone off in my body.

Fluoroquinolone Time Bomb: It’s All About the Mitochondria

My experience of a delayed onset of systemic health issues after having previously tolerated Cipro/Ciprofloxacin well, is typical of diseases that are brought on by a pharmaceutical causing mitochondrial dysfunction. (Multiple journal articles have noted that fluoroquinolones cause mitochondrial damage and oxidative stress.)

In “Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria” it is noted that:

…damage to mitochondria often reflects successive chemical insults, such that no immediate cause for functional changes or pathological alterations can be established. There is indeed experimental evidence that prolonged injury to mitochondria, such as that which typifies oxidative injury to mitochondrial DNA or to components of the electron transport chain (ETC), has to cross a certain threshold (or a number of thresholds) before cell damage or cell death becomes manifest.

Each time mitochondria is injured, the patient gets closer to his or her personal tolerance threshold for mitochondrial damage. Once the threshold is crossed, cell damage and apoptosis occur – which manifest themselves in various states of illness.

It is further explained in “Mechanisms of Pathogenesis” that:

…approximately 60% of mitochondrial DNA must be deleted from the mouse genome before complex IV activity is compromised and serum levels of lactate are elevated. This non-linear response can be explained upon consideration that the molecules that subserve mitochondrial function (e.g., mitochondrial DNA, mRNA, and ETC proteins) are present in excess of amounts required for normal cell function. This reserve (or buffering) capacity acts as a protective mechanism; however, at a certain stage of damage, the supply of biomolecules needed to support wild-type mitochondrial function becomes compromised.

The lay person’s summary of the above excerpts is that we have excess mitochondrial DNA and that excess mitochondrial DNA keeps each of us from developing a systemic multi-symptom illness whenever mitochondrial DNA is adversely affected (many pharmaceuticals and environmental toxins adversely affect mitochondrial DNA). However, when mitochondrial DNA is depleted sufficiently, cellular dysfunction, oxidative stress and cell death, ensue.

Multiple studies have noted that fluoroquinolones deplete mitochondrial DNA (here, here and here).  When enough mitochondrial DNA are depleted, adverse reactions that are systemic and include multiple symptoms simultaneously, occur.

Multi-Symptom Reaction: Look to Mitochondrial Damage

It is often difficult for the patient who is experiencing a systemic multi-symptom illness to connect his or her illness to the mitochondria damaging drug or toxin that hurt him or her because of the time delay between the cause (mitochondria damaging chemical) and the effect (bomb going off in body and mind). Though the delayed onset of fluoroquinolone toxicity and mitochondrial dysfunction symptoms are noted in many articles (here, here), the reason for the delayed onset of symptoms is not known.  In “Mechanisms of Pathogenesis” it is hypothesized that “an initial adaptive response was followed by a toxic response” when cells are exposed to a mitochondria damaging chemical. Perhaps the delay in adverse reaction onset is due to a toxic response taking time to develop.

Many pharmaceuticals damage mitochondria. Bactericidal antibiotics (including fluoroquinolones), Statins, acetaminophen, some chemotherapy drugs, vaccines, and many others, cause mitochondrial dysfunction, oxidative stress and cell death. Mitochondrial dysfunction and oxidative stress are connected to a variety of ailments, from chronic fatigue syndrome to Alzheimer’s disease and obesity. However, the FDA and other drug regulatory agencies have systematically ignored damage to mitochondria caused by pharmaceuticals and “mitochondrial toxicity testing is not required by the US FDA for drug approval.”

The recognition of delayed adverse reactions and tolerance thresholds for mitochondrial damaging drugs and vaccines will go far in helping both doctors and patients to recognize mitochondrial damage related adverse drug reactions (and adverse vaccine reactions). Once the reactions are recognized, perhaps some pressure can be put on the FDA and/or the pharmaceutical companies to test how drugs affect mitochondria before they are released onto the market. After all, mitochondrial damage and oxidative stress are causally related to almost every chronic illness.  It would be nice if doctors, those in the pharmaceutical industry, the FDA regulators, and others, recognized the harm that drugs do to mitochondria, and the symptoms of iatrogenic mitochondrial dysfunction.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on: www.floxiehope.com.

Share Your Story

If you have suffered from a fluoroquinolone or any other medication reaction, please consider sharing it on Hormones Matter.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Image was created using Canva AI.

This story was published originally on Hormones Matter in March 2014.

 

 

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The Downward Health Spiral Following Fluoroquinolone Antibiotics

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In 2016, I went on a cruise. Little did I know that this would change my life. I was prescribed a fluoroquinolone antibiotic called Ciprofloxacin (Cipro) for an uncomplicated UTI. At the time, I didn’t notice any side effects, but over the next few years I was having more pain than I would usually have with Fibromyalgia and Hypermobility Ehlers Danlos Syndrome (EDS). I also had episodes of breathlessness, chest pain, and fatigue, for which I was referred to cardiology and prescribed Atenolol, Clopidogrel, and Glycerol Trinitate (GTN) spray.

I started having many allergic reactions to foods and chemicals in products like toothpaste, shampoo, and hair dye (products containing sodium laurel sulphate). I had an allergic reaction to aspirin, which indicates salicylates sensitivity, and I experienced frequent candida infections in my mouth and esophagus. The candida infections in my mouth and throat were severe and I was initially prescribed Nystatin, which didn’t help. Then I was prescribed Fluconazole, which unfortunately flared my overall symptoms. It was unknown to me at the time that medications and other substances containing fluoride exacerbate Fluoroquinolone Associated Disability and so should be avoided.

I also developed dry eyes and ears for which I was prescribed Carbomer gel eye drops for nighttime use and Systane gel for day time. Finally, although I had migraines prior to the fluoroquinolones, they became much worse following the use of these antibiotics.

I did not realize that my symptoms were connected to this antibiotic until after another cruise in July 2018, where I was prescribed the same antibiotic for the same issue. However, this time I felt side effects almost immediately. I was extremely fatigued and had to spend much of the cruise resting in my cabin. When I arrived home, I was having a lot of pain in my calf muscles. The cruise ship doctor mentioned that this can be a side effect of the medication and so I visited my own doctor when I returned home. Initially, he didn’t think it was related, as he was only aware of issues with the Achilles tendon in athletes associated with this medication. However, as my health continued to decline over the course of the following year, and in line with side effects linked to the medication, he acknowledged that my health issues were related to the fluoroquinolone antibiotics.

A Diagnosis of Myalgic Encephalomyelitis

The deterioration in my health not only included unrelenting fatigue, I was also now experiencing severe chest pain, orthostatic intolerance, air hunger, terrible internal vibrations, neuropathy, and blood sugar fluctuations. I contacted Hope 4 ME and Fibro Northern Ireland, a local charity, and they offered me an appointment with a consultant physician. The consultant’s opinion was that I was suffering from a mitochondrial disorder. He gave me a diagnosis of Myalgic Encephalomyelitis (ME – severe), as I met the criteria for that condition particularly symptoms of Post Exertional Malaise (PEM).

Over the following months, the fatigue became totally debilitating. I developed sudden onset PEM from minimal activity. I was referred to cardiologists and respiratory consultants and had many cardiac function and respiratory tests, but nothing from these fully explained all of my symptoms. I was prescribed asthma inhalers and numerous cardiac medications, which I was unable to tolerate.

Food Sensitivities, MCAS, and Difficulties Healing

Slowly, due to having reactions, I had to begin cutting certain foods out of my diet. My diet now is extremely restrictive and contains no gluten, dairy, or nightshades. I eat only organic foods, due to chemicals in fruit and vegetables, and the antibiotics in meat and fish. I can’t risk having any further fluoroquinolones from the food chain. The consultant in Chemical Pathology & General Medicine, whom I had been attending for Fluoroquinolone Toxicity, suspected that I had Mast Cell Activation Syndrome (MCAS) and referred me to immunology who requested tryptase level testing.

In January 2019, due to my respiratory type symptoms, doctors suspected that I had developed a chest infection (walking pneumonia). This was ongoing for over 5 months. During that time, I was prescribed two courses of antibiotics (not fluoroquinolones), inhalers, nebulizer treatment, a course of prednisolone steroid, and the mucus medication Erdosteine and then Carbocisteine. My blood count dropped suddenly and I had various blood tests including those for vitamin and mineral deficiencies. I had numerous emergency trips to Accident and Emergency with respiratory, cardiac symptoms, and collapse (unconscious) resulting in a head injury.

Tendinopathies

After the treatment for the suspected chest infection issues, my tendons became increasingly more painful, extremely tight, and although, I would occasionally sublax in my shoulder joints due to Hypermobility EDS, I was not recovering from these like I normally would have. I attended another GP about my shoulder and he advised me that I needed to see an orthopedic consultant urgently. I would need to go privately due to very long wait list on the National Health Service (NHS).

The tendon pain in my legs rendered me unable to walk at times and the severe pain in my shoulders and arms makes it difficult to care for myself. I was assessed, and the results of MRI scans confirmed tendinopathy and bursitis. I was unable to sleep due to the pain.

Yes, It Was the Fluoroquinolones

As mentioned, it took some time before my symptoms were associated with the fluoroquinolone antibiotics. At the many GP appointments I had over Autumn/Winter 2018/2019, I kept reiterating that summer 2018 marked the beginning of this massive deterioration in my already poor health. I mentioned again having taken Ciprofloxacin and later receiving the ME diagnosis. I also mentioned a consultant in Chemical Pathology & General Medicine that had been recommended to me by my hypermobility physio. My GP knew of this consultant and recommended I see him privately. I made an appointment. When I read the referral letter, I noticed that my GP had mentioned the marked downturn in my health from summer 2018. He postulated that the fluoroquinolones I was given that July were responsible. On reading this, I then knew that I was correct in suspecting that something had happened to my body as a result of the medication.

The consultant didn’t confirm fluoroquinolone toxicity at this particular appointment but he did prescribe for me, privately, the off label medication low dose Naltrexone (LDN) to ease some of my symptoms. I’ve had numerous review appointments with this consultant and many blood tests. Correspondence from this consultant to other consultants to whom he has referred me, state I attend him for ‘Fluoroquinolone Toxicity, which seems to be well routed and has actually happened’.

Learning About Fluoroquinolone Toxicity Through Other Patients

There aren’t many treatment options for Fluoroquinolone Toxicity in the UK, so I have been doing what I can to educate myself and discover what I can do to ease my symptoms. I joined a few Facebook groups, which appear to mostly have American members in very large numbers. I also watched a YouTube video of The European Medical Council Public Enquiry where I heard orthopedic specialist, Professor Neal Millar speak. On googling his credentials, I came across a The Daily Mail article that mentioned Fluoroquinolone Support UK, which I joined. It has been extremely helpful connecting with those with shared experiences. We are able to support and learn from one another.

I also reached out to Professor Millar, with whom I have had telephone consultations. He confirmed that my issues are related to Fluoroquinolone Associated Disability, and has diagnosed me as such.

The Long List of Heart-Related Changes Associated with Fluoroquinolones

I have had numerous review cardiologist appointments, at which I went armed with printouts from The European Medical board, the Medicine and Health Products Regulatory Agency (MHRA) and other articles mentioning FDA warnings about the fluoroquinolone antibiotics. The cardiologists I saw were very receptive to these. I have undergone many more cardiac and respiratory tests including scanning for arterial tears and aortic aneurysms, which are listed as adverse reactions of fluoroquinolones. To date (2024), I am still under the care of these consultants. I have been diagnosed with Paroxysmal Supraventricular Tachycardia (PSVT), Microvascular Angina, Atrial Fibrillation, Bigeminy, Mitral valve and tricuspid regurgitation and enlarged Left ventricle. I DID NOT have these issues prior to being Floxed (the common term used to describe when the toxic side effects of fluoroquinolone antibiotics are experienced).

Other Issues Associated With Fluoroquinolones

I also suffer with mood swings, anxiety, insomnia, burning nerve pain, heat intolerance, flushing, and low body temperature. I’m still suffering the extreme variations in heart rate on minimal activity and PEM, angina pain, esophageal spasms, chemical and food sensitivities/intolerances. I developed a Dupuytren’s contracture, ganglion cysts and skin lesions, and one recently removed was a basal cell carcinoma. The fluoroquinolone exposure has exacerbated my pre-existing cervical spine pain and lower back and hip pain. All of this causes significant limitations of daily living.

Suicide Attempts: A Common but Recognized Adverse Event

I also suffered suicidal ideation and had three suicide attempts. Risk of suicidal thoughts and behaviors are side effects of fluoroquinolones and the FDA and MHRA have them in their warnings. There have been documented deaths by suicide due to fluoroquinolones, and recently, in the U.K. a cardiologist died by suicide whilst having been taking the drug for only a few days. On the report he sent to the MHRA: Robert Stevenson: Prevention of future deaths report – Courts and Tribunals Judiciary, the coroner listed the cause of death as suicide.

Unfortunately, due to all of these adverse drug reactions and their disabling effects, I have had breakdown in relationships and lost friendships. This has been heartbreaking, extremely traumatic, and stressful.

A Fluoroquinolone Specialist

I contacted Dr. Stefan Pieper after reading his book Fluoroquinolone-Associated Disability (FQAD) – Pathogenesis, Diagnostics, Therapy and Diagnostic Criteria: Side-effects of Fluoroquinolones. It is an invaluable resource for understanding FQAD. Dr. Pieper divides the fluoroquinolone adverse effects into four groups:

  • Oxidative stress and mitochondrial toxicity
  • Musculoskeletal damage and collagen disorders
  • Neurotoxicity, which includes: peripheral neuropathy, autonomic Neuropathy, and small fiber neuropathy
  • Neuropsychiatric adverse effects

I am currently receiving support from him. He confirmed that I have suffered a severe fluoroquinolone toxicity and recommended a number of tests. A microbiome test I had done in 2019 revealed:

  • Low levels of beneficial bacteria and probiotics detected
  • Low potential for microbiome fiber metabolism
  • Below-average microbiome ability to produce vitamin B1, B3, B5 and B9 in sufficient amounts

Based upon Dr. Pieper’s tests, a protocol was designed that included many supplements. I should mention that these supplements and medications are unique to my situation and should not be applied more broadly to others with Fluoroquinolone Toxicity without the advice of a physician. The supplements:

Probiotic, Prebiotic (Inulin), Collagen, Liposomal Vitamin C, Vitamin D with K2, Acetyl-L-Carnitine, MCT, D’Ribose, L’Glutamine, Wheat germ, Turmeric, Multivitamin, Allicin, Ubiquinol (Co Enzyme Q10), N-Acetyl- Cysteine, Omega 3 from Algae, Magnesium Bi-glycinate, Calcium, Cissus Quadrangularis, Ashwagandha, Bee Propolis,  Apple Cider Vinegar, melatonin, and B6 p5p.  I also have four weekly B12 (hydroxocobalamin) injections.

I also take the following prescription medications:

  • Atenolol
  • Clopidogrel (Plavex)
  • Certirizine
  • Famotidine
  • Low Dose Naltrexone Sublingual

Dr. Pieper also recommended that I should avoid, if possible, steroid treatments, vaccinations, antibiotics, NSAIDs, and unnecessary medical procedures, since they might cause flare-ups and make matters worse.

Where I Am Now

I am devastated that my life has been destroyed by this drug. Yes, I was already disabled due to the Fibromyalgia and Hypermobility Ehlers Danlos, but had a quality of life. That has been robbed from me due to two courses of 10 tablets of fluoroquinolones. I now predominantly use a power wheelchair due to the severity of the fatigue, heart issues, pain, muscular atrophy and PEM. I’m housebound with many days completely bedbound so I am significantly disabled.

Although I am terrified as to what the future now holds for me, particularly due to how severely I have been affected, I always try to remain positive and hopeful that healing could happen. My motto is “Live life in color” and although mine has been dimmed somewhat, I choose to be happy and optimistic. I remind myself that every day is a new day, and there are joyful moments to come.

By publicizing my story, I hope to raise awareness around Fluoroquinolone Toxicity and Fluoroquinolone Associated Disability (FQAD) because there should be more public awareness. Currently, there are multiple lawsuits underway in Canada related to fluoroquinolone antibiotics, including class action lawsuits and individual claims. In the U.K., there isn’t an ICD-10 diagnostic code for FQAD. ICD-10 codes are important in providing “a common language for recording, reporting and monitoring diseases”. Healthcare providers use ICD-10 codes when diagnosing patients. We need FQAD to be declared a medical disability, and NICE guidelines to provide health professionals with recommendations for the treatment and care of people suffering Fluoroquinolone Toxicity. In the USA, however, I’m pleased to see that The Center for Disease Control will be implementing ICD-10 code in October 2025.

The first ever Fluoroquinolone Awareness Day will be held on 22nd October 2024. The aim is to bring awareness to Fluoroquinolone Toxicity worldwide. There is a page on Facebook of same name containing information pertinent to the event. I am on the committee representing the U.K. We aim to promote awareness in whatever way we can, including flooding social media with information including our stories.

If you have suffered side effects from fluoroquinolones please submit a report. In the U.K. reports should be files with the MHRA via this link: MRHA Yellow Card. In the US, reports are filed via the FDA: FDA Safety Information and Adverse Event Reporting Program.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Who Reads the Drug Warning Labels?

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I have a confession – I didn’t even glance at the warning insert that came with my Cipro prescription. I didn’t even think about reading it. I didn’t think for a second that I needed to be worried about the side-effects of an antibiotic. I assumed that all antibiotics were safe, thoroughly tested, had few side-effects and that any side-effects that they had wouldn’t hurt ME. After all, I was a fit, strong 32 year old with zero health issues other than the urinary tract infection that I was trying to treat. I thought that I had nothing to worry about and that medicine generally and antibiotics specifically fell into the category of things that do good, not harm. So when I developed severe Central, Peripheral and Autonomic Nervous System malfunctions and inflamed tendons after taking Cipro, I was shocked and shaken that an ANTIBIOTIC that is prescribed every day to treat simple urinary tract and other infections, could cause me, a healthy and fit woman, to be suddenly systemically sickened.

I suppose that since I didn’t read the warning label, I have to take a certain amount of personal responsibility for what happened to me. Officially, I was warned. I should have known that Cipro, one of the most popularly prescribed broad-spectrum antibiotics on the market, could cause tendinopathy, renal failure, rash, anemia, hepatic failure, hallucinations, seizures, permanent peripheral neuropathy, etc. I should have read the warning label so, at the very least, I would have known that when I experienced inflammation and weakening of every tendon in my body (lightly referred to as tendinopathy – as if that even comes close), hives all over my body, loss of memory and reading comprehension, inability to concentrate, peripheral neuropathy, anemia, etc., that I was experiencing an adverse reaction to the drug that I had taken. Should’ve, would’ve, could’ve. I lived and learned and will certainly read warning labels in the future. However, I don’t think that I am unusual in not bothering to read the warning label that accompanied my prescription for antibiotics. Do other people read drug warning labels?

Doctors certainly don’t seem to read drug warning labels. Every single doctor who I asked whether or not Cipro could have caused my symptoms said that it couldn’t have, despite the fact that the majority of my symptoms are listed on the warning label.

And even if I had read the warning label, would I have been sufficiently warned? I assumed, as I think most people do, that drug side-effects are transient, that they are stopped as soon as administration of the drug is stopped, or at least as soon as the drug is fully metabolized. I had no idea that a drug could cause a syndrome that would take me years to recover from. Nowhere on the warning label does it say that side-effects can be long-lasting and, when I took Cipro in 2011, nowhere on the label was the word “permanent.” It was only added to the warning label in 2013 in reference to permanent peripheral neuropathy.

Who would think that a drug, an antibiotic no less, could cause a chronic syndrome that includes pain and nerve destruction? Again, doctors certainly don’t because not a single one acknowledged that my cascade of physical and mental issues that cumulatively was a toxicity syndrome, was caused by Cipro. This was despite not only the warning label but also thousands of patient reports, lawsuits, media reports and studies that show that I was not crazy or suffering from sudden onset of an autoimmune disease; I was poisoned by a prescription antibiotic.

Even if I had read the warning label, I likely would have assumed that side-effects were rare. The people who acknowledged that Cipro caused the damage that it caused in me dismissed the possibility that what happened to me could happen to them by saying that adverse effects of fluoroquinolone antibiotics (Cipro, Levaquin and Avelox) are rare. How, I wonder, would anyone have a clue whether or not Fluoroquinolone Toxicity Syndrome is rare? Given that the onset of symptoms is often delayed by days, weeks or even months after administration of the drugs has stopped; that doctors and patients alike are looking for allergic reactions when they are looking for adverse drug reactions, not systemic breakdown in the form of a syndrome; that the doctors who prescribe fluoroquinolones (general practitioners and emergency care doctors) are typically not the same doctors who treat the symptoms (rheumatologists, neurologists, psychologists, etc.); that there appears to be a tolerance threshold for fluoroquinolones (meaning that you can take it up to your threshold point without incident but once you cross your threshold point you suffer from a severe onslaught of symptoms), a concept that those who are doing drug studies don’t even seem to consider; and that almost everyone in the medical field is in complete denial about the dangers of these drugs, how in the world would anyone, including the FDA, have a clue what the frequency of adverse reactions to these drugs is???

Risk is not properly communicated via drug warning labels. Risk is a function of severity and frequency. Individual adverse symptoms are listed on drug warning labels, but nowhere does it state how severe each symptom can be, or whether multiple symptoms can occur simultaneously, or if the drug can trigger a long-lasting syndrome that itself is a chronic disease. How can people possibly assess the risk of experiencing severe, life-altering, long-term side-effects if it’s nowhere on the warning label that those things can happen? And if frequency of adverse reactions is systematically under-acknowledged for the reasons listed above, how can people possibly assess the likelihood that an adverse reaction will happen to them?

Perhaps doctors and patients alike are doing the sensible thing in not bothering to read drug warning labels. If the information that they give is arbitrary and they don’t help people to assess the actual risk associated with a drug properly, they should be ignored.

The only party that the warning labels are truly serving is the drug companies, because if they can say that they warned you through the paperwork that accompanies dangerous drugs, you can’t sue them.

So who is appropriately communicating the real risk of adverse drug reactions to patients? Who is communicating the risk to doctors? How is anyone supposed to know the real severity and frequency of adverse drug reactions? We’re not getting that information – from anyone. The FDA is failing to provide that information. Neither doctors nor patients are demanding that information. Everyone is assuming that adverse drug reactions are rare, while the number of deaths from prescription drugs climbs and the number of chronic diseases that people suffer from, many of which are caused by adverse drug reactions, skyrockets.

Perhaps it is time that we start demanding that drug warning labels mean something. They should accurately and completely reflect the real dangers associated with each and every drug. Frequency of adverse events should be noted on the warning labels. This is not too much to ask for. Patients, doctors and everyone else involved should insist on it. We deserve to know.

For a list of warnings that should be on the label for fluoroquinolone antibiotics, please visit www.ciproispoison.com.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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This article was published previously in October 2013.  

 

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Dear Epidemiologists, Consider Fluoroquinolones

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Dear Epidemiologists,

I am writing to encourage you to study the long-term and intergenerational adverse-effects of fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin, and their generic counterparts). It has been noted by both patient groups and the FDA that fluoroquinolones have long-term adverse-effects, yet many patients and physicians are caught off-guard when fluoroquinolone toxicity symptoms are not transient. Fluoroquinolone toxicity symptoms are similar to those of many multi-symptom, chronic, mysterious diseases of modernity, and epidemiological studies are needed in order to determine if the similar symptoms are coincidental, or if they are indicative of a causal relationship between fluoroquinolone use and many of the diseases that fluoroquinolone toxicity resembles.

The Acknowledged Adverse Effects

The musculoskeletal adverse effects of fluoroquinolones are well-known, and fluoroquinolone antibiotics even carry a black box warning noting that they increase the risk of tendon ruptures. Studies have shown that fluoroquinolones also increase the risk of retinal detachment, and a recent (2015) article in JAMA Internal Medicine noted that the risk of aortic aneurysm and dissection is increased with fluoroquinolone use. All these adverse effects point to fluoroquinolones causing collagen synthesis disorders and/or collagen toxicity.

The 2015 BMJ Open article, “Fluoroquinolones and collagen associated severe adverse events: a longitudinal cohort study” goes over the increased risk of tendon ruptures, retinal detachment and aortic aneurysm and dissection in those given fluoroquinolones. The authors conclude that:

“Current fluoroquinolone use was associated with an increased hazard of tendon rupture (HR 3.13, 95% CI 2.98 to 3.28), and increased hazard of aortic aneurysms (HR 2.72, 95% CI 2.53 to 2.93). The relative hazard of these two collagen-associated adverse events were slightly attenuated after multivariate adjustment, but remained clinically meaningful and statistically significant (table 2). The relative hazard of retinal detachment was modest in magnitude, and only statistically significant after multivariate adjustment (table 2). The magnitude of the association of fluoroquinolones and aortic aneurysm events was stronger than the association observed with other aneurysm risk factors such as hypertension and atherosclerosis (table 3).”

“Fluoroquinolones and collagen associated severe adverse events: a longitudinal cohort study” is an excellent study, and I commend the authors for their work. However, a couple of drawbacks of it are that the authors only look at patients who are over the age of 65, and the time-period examined is only 30-days post-exposure, though many fluoroquinolone toxicity patients are under the age of 65, and many experience adverse effects months, or even years, after exposure to the fluoroquinolone.

It would be helpful for both patients and physicians if similar studies were conducted looking at the long-term health outcomes for people of various ages after exposure to fluoroquinolones.

Collagen Synthesis Problems and CNS Symptoms

The relationship between other diseases that have to do with disordered collagen synthesis and fluoroquinolone use should also be examined. For example, fluoroquinolone adverse-effects include many central nervous system symptoms, including convulsions, toxic psychosis, suicidal ideation, dizziness, confusion, tremors, hallucinations, depression, anxiety, insomnia, and many other psychiatric symptoms. It is possible that the collagen in the central nervous system is adversely affected by fluoroquinolones, and that fluoroquinolone use is associated with the rise in psychiatric illnesses in the population. It is a hypothesis that should be explored.

Fluoroquinolones and Multi-symptom, Chronic Illnesses

Many patients who have adverse reactions to fluoroquinolones suffer from multi-symptom, often chronic, illness. Fluoroquinolone toxicity has symptoms that are similar to those of autoimmune diseases (including lupus, rheumatoid arthritis and M.S.), neurodegenerative diseases (including ALS and Parkinson’s), and mysterious diseases like fibromyalgia and M.E./chronic fatigue syndrome, and the symptoms often overlap with those of chronic Lyme disease. (Some patient stories that go over the symptoms of fluoroquinolone toxicity can be found on www.fqwallofpain.com). It would be helpful if some epidemiological studies were done to see if fluoroquinolone exposure predisposes people to a diagnosis of an autoimmune, neurodegenerative or other mysterious diseases.

Those who have experienced fluoroquinolone toxicity see the connections between fluoroquinolones and those diseases—because we went from being healthy to suddenly being sick with symptoms of multiple chronic diseases shortly after taking a fluoroquinolone—but our experiences are only anecdotal unless studies confirm our assertions. Epidemiological studies to determine whether or not there is a connection between fluoroquinolone use and autoimmune, neurodegenerative and mysterious diseases would be immensely helpful in showing whether the relationship is causal or anecdotal.

Fluoroquinolones and Diabetes, Heart-disease, and Autism

Fluoroquinolones have been shown to cause dysglycemia and use of fluoroquinolones is correlated with type-2 diabetes. Diabetes is a growing problem that is causing pain and suffering to millions of people worldwide. If even a small percentage of diabetes cases could be prevented through more prudent use of fluoroquinolones, much pain and suffering could be alleviated. Quantifying the relationship between fluoroquinolone use and diabetes via an epidemiological study would be immensely useful.

Given that fluoroquinolones have been shown to increase incidence of aortic dissection and aneurysm, it would be interesting to see if they are associated with heart-disease more generally.

It was noted in the 2013 article in Nature, “Topoisomerases facilitate transcription of long genes linked to autism” that, “chemicals or genetic mutations that impair topoisomerases, and possibly other components of the transcription elongation machinery that interface with topoisomerases, have the potential to profoundly affect expression of long ASD (autism spectrum disorder) candidate genes.” Since fluoroquinolone antibiotics are the most commonly prescribed topoisomerase interrupting drugs, it is worthwhile to look into whether or not they are related (intergenerationally, most likely) to autism.

Longer-Term Studies Are Needed

It has been known for many decades that fluoroquinolones have serious and severe adverse-effects, yet very few studies of the long-term effects of fluoroquinolones have been conducted. Fluoroquinolone affected patients have been noting that they have experienced fluoroquinolone toxicity symptoms months, or even years, after administration of the drugs has ceased, and even the FDA has noted that fluoroquinolone associated disability (FQAD) is a consequence of fluoroquinolone use. However, fluoroquinolone studies have primarily concentrated on adverse-effects that occur while the drug is being administered. Long-term, and even intergenerational, epidemiological studies will enlighten us to the true consequences of fluoroquinolones.

Many Questions to Study

How much does fluoroquinolone use increase a person’s risk of getting an autoimmune disease? How much more likely is a person to become diabetic if they use a fluoroquinolone to treat a sinus infection? How much more likely is a person to need a pain medication like Lyrica if they have been prescribed a fluoroquinolone in the past? Are thyroid diseases more common in those who have taken fluoroquinolones than in those who haven’t? Are psychiatric illnesses more common in those who have taken fluoroquinolones? Are people more likely to suffer from heart-disease if they have taken a fluoroquinolone? Are there any intergenerational effects of fluoroquinolones, and, if so, how are they manifesting?

These are all reasonable questions to ask, given the long list of adverse-effects caused by fluoroquinolone antibiotics.

Patients have been screaming about the connections between many of the diseases of modernity and the symptoms of fluoroquinolone toxicity for years, but our screams will only be heard if there are data to back them up. Studies need to be done to get necessary information, so I encourage all scientists who have the access to data and expertise needed, to study fluoroquinolones. People are being hurt by these drugs. Information, data, science and a bit of enlightenment, will help to encourage more prudent and appropriate use of fluoroquinolones, so that the pain caused by them can be minimized.

To all the scientists who have studied fluoroquinolones—your work is appreciated and I hope that it is built upon. Thank you in advance to all those who look further into fluoroquinolone adverse reactions. Your work will be greatly appreciated as well.

Regards,
Lisa Bloomquist
Patient advocate and founder of Floxiehope.com

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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This letter was published previously on Hormones Matter in December 2015.

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How Many Doctors Does It Take To Fix the Shower? A Tale of Fluoroquinolone Injury

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I don’t know much about plumbing, I’ll admit it. I‘m not afraid to use a plunger, or take the lid off the toilet to jiggle the parts on the inside. I am also a master at pouring Drano in a clogged pipe. Usually this level of expertise is enough to solve the majority of my problems. However, when things get complicated, jiggling the handle just won’t do. Luckily there is a person with the technical know-how to fix most everything that my plunging skills won’t. Just one phone call away and I’ve got him. The plumber.

Plumbers can handle all sorts of issues. They arrive, do whatever magic it is that gets everything in running order again, charge a fee, and leave us happily using the facilities. But imagine this. When the plumber arrives, instead of fixing your shower issue, he (or she) takes a cursory glance. Maybe he quickly turns the faucet on while you try to explain the problem. He doesn’t really listen, but still pinpoints the issue right away. “Your problem is the showerhead. You need a new one.” Perhaps you argue that this may be true, but what about the drain?  “Well, I only diagnose showerheads. You are going to need to call a drain guy to fix your drain.” Huh?  Well, OK. At least go ahead and fix the showerhead. “Oh, I can’t fix that. You need the showerhead guy for that. I just diagnose showerheads. I don’t fix them.”

Ridiculous right? Of course it is. But this is essentially what happens when we venture into the medical world with any complaint more complicated than the sniffles. Take my experience. In the last 5 months, an adverse reaction to a fluoroquinolone antibiotic (Cipro) has caused my husband’s body to go haywire. Going to our family doctor my husband had a myriad of complaints (some that came right after the prescription, some that came later). These included tendon and body pain, nerve pain, tingling and buzzing nerves, insomnia, depression (can’t think why), chemical and food sensitivities, a persistent rash, and other issues which I am not at liberty to share publicly.

My husband’s doctor did what doctors are trained to do. He consulted the checklist.

Primary Physician Checklist:

  1. Throw more drugs at the problem (in this case NSAIDs for inflammation).
  2. Perform tests to eliminate “serious” issues (MS?  Fibromyalgia? Arthritis? No, no, no. Fluoroquinolone/Cipro toxicity?  Yes. This seems serious enough to us, despite our doctor never having heard of such a thing.)
  3. Refer to specialists.

Fluoroquinolone Side Effects Aren’t Impressed by Checklists

The Physician’s Checklist is a three pronged approach that got us exactly nowhere. Which is not at all surprising because the logic behind this all too common approach is deeply flawed. The implicit reasoning is that a patient can be divided into individual body parts and systems, each one with an associated specialist. For the body and tendon pain, a rheumatologist. For the nerve pain, tingling, and buzzing, a neurologist. For the rash, a dermatologist. For the foot pain, a podiatrist. For the crazy B6 and B12 blood test results, a nutritionist. For the depression, a therapist. Although we haven’t been to an endocrinologist, an allergist, or a gastroenterologist, I’m sure we could get an appointment quickly. Referring to specialists is something our primary care physician does very well. It’s the last thing on his checklist after all.

The problem that should be obvious here (besides our doctor’s total ignorance of side effects from fluoroquinolones) is that nowhere in this process has my husband been treated as more than the sum of his parts. None of these doctors talk to each other. (For good reason perhaps. Would another doctor have patience with a neurological diagnosis of “it’s probably static on the line” with a prescription for “you can try the meds I prescribe to my diabetic patients, or not”?) Why, for example, is my husband intolerant to foods, supplements, and medications that used to cause him no issue? Aren’t these symptoms possibly related, both to each other and to other symptoms? Also, why are the majority of his issues concentrated on the left side of his body? His rash is on his left leg. His foot pain is in his left foot. His nerve issues are most pronounced in his left leg and left temple. His left big toenail has a discoloration that is not present on the right toe…  None of our doctors have found this at all remarkable or interesting. Perhaps we would do better if doctors divided themselves by body regions. We could go see the “leftologist” and have better luck.

This specialization is now the cornerstone of western medicinal practice. And under ideal conditions, it saves lives. For example, if you have a strange spot on your skin, where else would you want to go but to Stanford’s “Pigmented Lesion and Melanoma Clinic”? An entire clinic of the most well renowned doctors in the world, whose sole focus is diagnosing and treating spots like yours. Yes, that is truly great. However, doctors have become so very specific in their field of expertise, that they most often do not have the knowledge, time (or frankly the interest) to look outside of their own domain. (Looked at in a different way, they treat melanoma, not people.) Humans are intricate creatures. Our health is a complex and elaborate system that is not divisible into discreet elements.  Sometimes a spot is skin cancer. Sometimes it’s a hormonal imbalance. Sometimes it’s a side effect of medication. When our health becomes complicated, our specialists are rarely equipped to look beyond the bits and pieces and treat an entire person.

Modern general practitioners have become, in many cases, little more than the gatekeepers to these special specialists. When health concerns becomes complex, there is another professional to direct the patient to. This creates a situation in which nobody is truly responsible for treating the whole patient. Had my husband taken the conflicting advice of every specialist he visited he would, with no diagnosis whatsoever, have treated irritated nerves with pain medication, aching tendons with pain medication, injured feet with pain medication, insomnia with sleeping pills, depression with anti-depressants, ulcer-like stomach pains (caused from accepting the pain meds early on) with proton-pump inhibitors. And the rash?  The treatment recommendation for that was a fluoroquinolone antibiotic. Specifically, Cipro. The same fluoroquinolone drug that started this whole mess.

There Is No Such Thing as a Fluoroquinolone Toxicity Specialist

The one tangible outcome from visiting these various specialists is the gravity that it lends to my husband’s situation. The prevailing thought from people seems to be, “Well, it must be very serious if he has seen specialists!” Close on the heels of this thought is the question of whether we have yet seen the right specialist. We live in Silicon Valley so people’s inevitable question is, “Well, have you been to Stanford?”  I guess Stanford is where people go when they are serious about getting well. (Not like us, we’re satisfied with misery?) This question is well meaning. But it clearly shows that people have an ingrained trust in the way our medical system runs (insurance issues not withstanding). If you have not been helped, it must be because you haven’t been to the right specialist yet. The specialist with the most education. The expert. Surely a Stanford neurologist can cure my husband’s nerves, a Stanford rheumatologist can soothe the body pain, a Stanford podiatrist can fix the feet, a Stanford dermatologist can cure the rash, and a Stanford therapist can make everything cheery again. It’s not the system that’s the problem. It’s the individuals within the system.

This isn’t logical and I no longer believe it. I don’t accept that our two options are that groups of specialists looking at small parts of the whole can fix each of those parts independent of one another, and if not, we’re hopeless. Surely our multitude of doctors can aspire to do better than this, but it seems not. Ultimately we were helped by one visit to a specialist.  It was the nutritionist who finally was at all useful.  She essentially said, “I don’t know how to help you. You need to see a naturopathic doctor, and research alternative medicine.”  This is ultimately what we have decided to do.  We will have to go outside the mainstream to find a health professional that sees patients as whole humans. We refuse to be treated any longer as a mismatch of thrust together parts. The plumber could do better.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

Image credit: Mike Bitzenhofer, via Flicker; CC 2.0;  https://creativecommons.org/licenses/by-nc-nd/2.0/

This article was published previously on Hormones Matter in December 2013.

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When Investigating Fluoroquinolone Reactions, Move Beyond the ER

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When trying to determine the danger associated with a drug, the number of Emergency Room (ER) visits that result from use of that drug is often cited. While anaphylactic shock and other acute ER worthy reactions should certainly be measured, exclusively looking at how often a drug leads to ER visits is not a comprehensive, or accurate, way of determining the danger of a drug. Simply looking at ER visits leads those trying to determine the risk associated with a drug to fail to take into consideration chronic illnesses and conditions that are caused by prescription drugs, and leads them to only recognize adverse reactions that are immediately life-threatening. Acute and temporary reactions are over-emphasized while systemic and chronic reactions are under-recognized.

When Only ER Visits are Considered, Fluoroquinolones Look Safe

For example, when comparing the safety profiles of different antibiotics, the following was noted in the Journal of Family Practice:

The Centers for Disease Control and Prevention estimates that adverse events from FQs (fluoroquinolone antibiotics) leading to emergency department (ED) visits occur at a rate of 9.2 for every 10,000 prescriptions. That’s higher than the ED rates for cephalosporins (6.1 per 10,000) and macrolides (5.1 per 10,000), but far lower than for penicillins (13 per 10,000), clindamycin (18.5 per 10,000), sulfonamides (18.9 per 10,000), and vancomycin (24.1 per 10,000).

Thus, fluoroquinolone antibiotics are slightly less safe than cephalosporins and macrolides, but slightly more safe than penicillins, clindamycins, sulfonamides and vancomycin, right? That’s what the statistics around trips to the ER clearly note. However, what these data fail to take into account is that adverse reactions to fluoroquinolones are not generally allergic or acute reactions, whereas adverse reactions to penicillins, clindamycins and sulfonamides are. The ER is the place to go when suffering from an acute reaction. When a patient is going through anaphylactic shock or inflammation that is threatening their life as a result of an allergic reaction, the ER is where their life can be saved.  It is where epinephrine, steroids and antihistamines can be administered, and those drugs can save the life of a patient experiencing a severe allergic reaction.  Adverse reactions to fluoroquinolones are not allergic reactions. Though anaphylactic shock can occur as a result of taking a fluoroquinolone, it is an uncommon adverse effect.

More often, those experiencing adverse reactions to fluoroquinolones experience weakening of all of the connective tissues in their body (especially tendons), peripheral neuropathy, insomnia and/or other CNS related symptoms, debilitating fatigue, dysautonomia, etc.  None of these conditions warrant a trip to the ER, yet they are serious and severe symptoms of Fluoroquinolone Toxicity Syndrome. In only looking at ER visits when trying to determine the safety of a drug, the symptoms of an adverse drug reaction that are chronic, as opposed to transient like allergic reactions, are systematically disregarded and the safety profile of the drug is not accurately represented.

Conditions that can be quantified and measured using tests and data-points that are currently easily at the disposal of doctors, and conditions that can be rectified through the tools that are available to doctors – like allergic reactions to penicillin – are recognized.  Everything else is considered to be non-existent, mysterious or all in a patient’s head (as if what is in a patient’s head isn’t important). Systemic, chronic injuries caused by fluoroquinolones and other drugs are not seen because only adverse drug reactions that result in ER visits “count.” This is a problem because if doctors are only looking at a single data-point for determining the safety of a drug, and that data-point is the wrong one to look at, no one is getting an accurate or complete picture of the safety of drugs.

The frequency of adverse reactions to drugs that are more chronic and systemic in nature can be determined through long-term studies that take into consideration things like lifetime tolerance thresholds, delayed adverse reactions, etc. They should be implemented so that patients and doctors alike can have an accurate and comprehensive notion of the dangers of the drugs that are prescribed. ER visits are easy to calculate while long-term studies that recognize issues that are difficult to quantify (because the right tests are difficult to find and expensive to administer) are very difficult to conduct. Therefore, out of laziness, inertia and lack of funding, the wrong data is considered and drugs that cause chronic issues are falsely thought to have inflated safety records.

Asking the wrong question and expecting the right answer has never served anyone well, and doing that systematically in medicine is not serving patients or doctors well. It is not good for healthcare and it is not good for anyone seeking the truth about adverse drug reactions. If one wants to know the answer to the question of “How safe are fluoroquinolones?” we must move beyond trips to the ER and standard acute adverse reactions. Simply looking at ER visits is intellectually shortsighted and it leads to a false sense of security when prescribing dangerous drugs. Perhaps gathering some additional data-points should be considered.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

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This article was published previously in December 2013.

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Repeated Use Doesn’t Make Fluoroquinolones Safe

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fluoroquinolone antibiotics

“I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours. It’s a good drug with an excellent safety record.” 

Some version of that statement is said to many patients who approach doctors with the many symptoms of fluoroquinolone toxicity syndrome. Fluoroquinolones (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) have been shown to damage connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage the nervous systems (central, peripheral and autonomic), and lead to multi-symptom, often chronic, illness. Most of the symptoms of fluoroquinolone toxicity are listed on the 43 page warning label for cipro/ciprofloxacin.  However, disregard of patients with fluoroquinolone toxicity syndrome is, unfortunately, common. Statements like the one above are wrong-headed and foolish – here’s why:

  1. The statement of, “I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours” and implying that therefore fluoroquinolones are safe, is an illogical argument based in ego, not fact.  Prescribing a drug hundreds of times does not make it a good, or safe, drug. The fact that something has been done millions times before does not mean that it’s the right way to do things. As an example, millions of people were given Vioxx before it was taken off the market because it causes heart attacks and strokes. If a physician never saw a heart attack result from Vioxx use, that doesn’t mean that they didn’t happen. They did. Thousands of people had heart attacks and died because of Vioxx. A history of doing something wrong does not make it right.  Implied in the statement that a physician has never seen fluoroquinolone damage is the assumption that what a physician sees is factual and without bias.  If a doctor regularly prescribes a drug, he or she is going to believe in its safety and efficacy based on a desire to see him or herself as one who helps patients, regardless of its actual safety and efficacy. Doctors have bias and ego just like the rest of us.  Anecdotal evidence, even anecdotal evidence from a doctor, is not able to trump experimental evidence.  Drugs need to hold up in scientific experiments and controlled trials – not in the opinion court of doctors.  In multiple experiments, fluoroquinolones have been shown to damage cells (by depleting mitochondrial DNA, magnesium, lipids, enzymes, etc.).  Science wins every time, and the scientific evidence comes down on the side of fluoroquinolones being dangerous drugs.
  2. It shows an unwillingness/inability to connect pharmaceutical drugs to multi-symptom diseases. Fluoroquinolones deplete mitochondrial DNA and lead to mitochondrial dysfunction. When mitochondria aren’t functioning properly, cells aren’t functioning properly. Mitochondria are the energy centers of eukaryotic cells – the engines. If cellular engines are malfunctioning, many systems shut down. This shut-down can lead to a cascade of damage – much of it self-perpetuating and difficult to repair. The details of the biochemistry behind this are incredibly complex and difficult, but the basic concept of drugs that cause mitochondrial damage lead to multi-symptom, chronic illness, isn’t so difficult that someone who went through med school shouldn’t be able to grasp it. But many doctors are loathe to admit that the drugs that they prescribe cause mitochondrial damage.  Many studies have shown that fluoroquinolones damage mitochondria (HERE and HERE). Even the FDA acknowledges that the mechanism through which fluoroquinolones do damage is through mitochondrial toxicity. Mitochondrial toxicity = multi-symptom, often chronic, illness. It’s not that hard. But if doctors admitted that fluoroquinolones cause multi-symptom, chronic illness, they may have to look at the relationship between all mitochondria damaging drugs (statins, SSRIs and even acetaminophen are on the list along with fluoroquinolones) and the rise in mysterious multi-symptom illnesses. If they did that, they may have to admit that the drugs they prescribed, ‘hundreds of times’ are hurting people – and who wants to do that?  It’s much easier to repeat the lie of, “these drugs have an excellent record of safety and efficacy,” than it is to admit to inflicting harm (even inadvertently) on patients.
  3. They’re not looking at delayed reactions or tolerance thresholds. Despite the fact that both delayed adverse reactions and tolerance thresholds for fluoroquinolones are documented (it all goes back to how mitochondria respond to damage – more HERE), reactions that occur after administration of the drug have stopped are not connected to the drug by many physicians. “It should be out of your system by now,” is repeated often.  That may be the case, but the drug set off an intracellular bomb and now the damage is self-perpetuating. Delayed reactions and tolerance thresholds may make recognition of adverse drug reactions difficult, but it doesn’t make them go away. Unfortunately, cells don’t always act as they “should” – they act as they do – with messy things like non-linear reactions, negative feedback loops, etc.
  4. The specialist model keeps many doctors from seeing the damage that fluoroquinolones cause. For example, ER doctors often prescribe fluoroquinolones because they’re powerful broad-spectrum antibiotics. But when people have an adverse reaction a week later that looks and feels a lot like an autoimmune disease, they’re not going to the ER for treatment because autoimmune-disease-like symptoms are for a rheumatologist or general practitioner to treat, not an ER doctor. This disconnect keeps many doctors from seeing the harm done by fluoroquinolones.
  5. Statements like, “I’ve prescribed fluoroquinolone antibiotics to hundreds of patients and I’ve never seen problems like yours. It’s a good drug with an excellent safety record.” communicate to patients that a physician’s anecdotal evidence is more important than a patient’s pain. It communicates that it’s okay for side-effects of a drug to be devastating as long as the doctor perceives the adverse reactions as rare. It’s not okay for a doctor to disobey his or her Hippocratic Oath and hurt patients – even inadvertently. And I would argue that adverse reactions to fluoroquinolones are far less rare than anyone would like to believe (arguments HERE and HERE).
  6. It shows that doctors don’t believe the warning labels on drugs. The warning label for Cipro/ ciprofloxacin is 43 PAGES long and lists many musculoskeletal and nervous system adverse effects of cipro and other fluoroquinolones. Do doctors think that the FDA is just kidding when they put all those adverse effects on the warning label?
  7. The mantra of, “fluoroquinolones have an excellent safety record” has been repeated so many times that it is assumed to be true. It is not true. There are hundreds of studies showing that fluoroquinolones profoundly damage cells and there are zero studies that show that people are immune to the damage caused by fluoroquinolones. The perception of safety is based on an unwillingness to recognize tolerance thresholds for fluoroquinolones, delayed adverse reactions to fluoroquinolones and the connection between fluoroquinolones and multi-symptom diseases.
  8. It shows that they’re afraid. Some of the fear is legitimate.  Antibiotic resistance is on the rise.  If fluoroquinolones are restricted to only being used appropriately – i.e. in life-or-death situations after all other antibiotics have failed – doctors will have fewer tools at their disposal and they may not be able to fight a nasty infection without inflicting cellular damage that results in chronic illness. No one wants to have to choose between an infection and multi-symptom, chronic illness.  It would be better to have neither. But if there aren’t any options of antibiotics that don’t cause the cellular damage that leads to oxidative stress and multi-symptom illness… well, that’s a possibility that is too frightening and daunting to think about.
  9. Too many doctors are attached to lazy medicine – throwing strong, broad-spectrum antibiotics at everyone who comes in the door with an infection (or just a high white blood cell count). If the adverse effects of fluoroquinolones were acknowledged, the pros and cons would have to be careful weighed before administering them.  A long discussion with patients about tendon ruptures, peripheral neuropathy, increased chance of diabetes, central nervous system damage, etc., would have to be had along with every prescription for Cipro, Levaquin or Avelox in order for an obligation of informed consent to be met. If broad-spectrum fluoroquinolones couldn’t be thrown at every infection, bacterial cultures would need to be done to figure out exactly what antibiotics would work best.  That takes time and money and it’s easier to do things as they have been done – even if it involves denying the damage that fluoroquinolones do.  Those pesky tests to make sure that the Hippocratic Oath is upheld may get in the way of business.

Adverse drug reactions don’t stop happening just because they’re inconvenient; or because they’re unrecognized or misdiagnosed. They don’t become rare or insignificant just because they are complicated and difficult to recognize.

Fluoroquinolones are dangerous drugs that damage cells on multiple levels. This has been shown in laboratories many times. The cellular damage caused by fluoroquinolones (along with the destruction of the microbiome) leads to multi-symptom, often chronic, illness. This has been shown by multiple patient reports.

Many doctors haven’t read the memo about how dangerous fluoroquinolones are though. Shouldn’t they know the dangers of the drugs that they prescribe?  Shouldn’t they have learned about adverse drug reactions in school?  It doesn’t seem like too much to ask for.  There are hundreds of studies showing that fluoroquinolones damage eukaryotic cells. Shouldn’t they have read them, or at least been told about them by the FDA?

You’d think so.  But the mantra of, “Fluoroquinolones have an excellent record of safety and efficacy” has been repeated so many times that it’s thought to be true just because it’s been heard over and over again.  Let’s change the mantra. How about, “fluoroquinolones are dangerous drugs that should only be used in life-or-death situations?” That mantra sounds much better.  It’s more appropriate, and it’s closer to the truth. If we keep on repeating it, maybe doctors will start to listen.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

This post was first published on October 1, 2014.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

Photo by karatara: https://www.pexels.com/photo/male-statue-decor-931317/

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