Cipro

When Investigating Fluoroquinolone Reactions, Move Beyond the ER

5541 views

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.

Share Your Story

If you have experienced injury or illness from a fluoroquinolone antibiotic, share you story.

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. 

Photo by camilo jimenez on Unsplash.

This article was published previously in December 2013.

Share

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

9589 views

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.

Yes, I would like to support Hormones Matter.

Share Your Story

If you have suffered from a medication or vaccine adverse reaction, please share your story.

Write for Hormones Matter

Photo by Jessica Tan on Unsplash

This article was first published on June 8, 2015.

Share

Repeated Use Doesn’t Make Fluoroquinolones Safe

5150 views

“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/

Share

Becoming the Person I Hoped I Was

3829 views

When life changes its mind about the size of the mountain you’re climbing, you will suddenly find that you have some decisions to make.  My husband got sick.  He was hit, badly, with long term side effects stemming from a short course of Ciprofloxacin (Cipro), a fluoroquinolone antibiotic. The side effects from Cipro can be a horrific and long term, but are often invisible. Blood tests come back normal, neurological exams reveal nothing of note, the sufferer often looks fine, and worst of all, most doctors are completely unfamiliar with these adverse reactions. This of course means that most people are completely unfamiliar.  We certainly were.  But without a doubt my husband was sick, and I had some decisions to make. The biggest decision I at first didn’t know I was making (daily, even minute by minute) continues to be this: what kind of person am I going to be?

I have unknowingly been faced with this decision before. Two years ago, James, the husband of a coworker got sick. Really sick. He had stage four esophageal cancer, and it was very unlikely that he would survive long after the “last hope” surgery.  His wife was not in a position to stay home and take care of him and she had to continue working full time. They also had two elementary age girls. Not much could be worse.

After his surgery, James had trouble getting enough calories. I like to bake so I made him some cookies, and a couple of chocolate cakes. Actually, what I really did was make cookies and cakes for my future husband and for parties, but I made sure to double the batches so I could give some to James. This was the extent of my support. James and his wife expressed their gratitude far beyond the reality of the gesture. This attention embarrassed me a little, but mostly made me feel rather pleased with myself. Yes! I am one of those people who bake when my acquaintances are ill!  What an amazing, empathetic, wonderful person I am. I did not go so far as to credit myself with James’s survival and subsequent return to health, but I allowed for how the chocolate probably helped.

I had made the decision to act on my compassion. A little. Well, not so very much actually. Almost literally the crumbs from my kitchen. Yet I now understand the level of gratitude around a few cookies. Today similar small gestures from the people around me stun me with appreciation of my own. I understand it now. My friend makes enough extra soup so that I can have lunch for three days. My coworker orders the annual holiday craft for my students without bothering me with the details. Another friend texts to see if I need anything at Trader Joes. “I’m going later, what can I get you?”  These moments stick.

Cipro toxicity isn’t like cancer. It isn’t something that people already understand to be a struggle. Like many chronic conditions, it can become invisible to those not suffering. It is easy to ignore something (or someone) who disappears from daily life, without any official medical diagnosis. So easy in fact that this is many people’s natural inclination. To ignore or minimize. This was my inclination.

On the best days the gratitude I now feel for small acts of kindness can seem a fair trade for the unawareness that formerly accompanied our good health.  The rarity of these acts makes them more powerful. Many people who know our story ask my husband how he is, but more often people don’t. Ever. I suspect these people do care (or at least I am deciding to believe they do). So what is the disconnect?

From my own experience, reaching out to help anyone in need takes an ability to look beyond, briefly, the ever present squawk from the needs of your own life. That was me.  Since my husband has been sick I have heard from many people about their own struggles. How did I not notice my sister has been fighting through horrible digestive issues? How did I miss my friend having constant headaches for four months (after taking Cipro, by the way!)? How did I miss my coworker’s father passing away?

When I did used to look beyond my life, I would often be immobilized by anxiety. There is a real courage involved in moving past the fear and discomfort of saying something wrong. In the past I lacked that courage. I justified with thoughts that generally began, “I don’t want to remind her of….”  Really? Did I think there was a moment that she had forgotten that her father had died, her husband had cancer, her head was pounding, whatever? No. It may hide for a moment but she always knows it’s there. What she does not know is that I remembered it’s there. And that I cared. It is the rare person who can push past these obstacles and offer something anyway.  It is the rare moment when they do.

I am also grateful because I believe acts of compassion, small as they may be, give me a glimpse into the very best selves of those around me. My father and sister could not be more supportive. My aunt has been lovely. Our closest friends have rallied throughout. Although I already knew this information about my family, many of the friends I have chosen in my life are turning out to have a depth to them that has not been apparent to me before. Perhaps this was always true and I just never had occasion to see it. Or perhaps this is something that my friends are deciding about themselves, in the same way that I am deciding about myself. Maybe with every decision we make there is an associated change in ourselves. I don’t know. I do know that the way this has deepened my feelings for these people is as if, from the mountain, I thought I was looking at the edge of a lake in the distance. But now after climbing a little higher, it turns out it is the beach of an ocean. What a dazzling view.

Since my husband’s illness began 6 months ago, every person in my life has been presenting me with an unintended gift the moment I started paying attention. The gift of example. Everyone has and is modeling the kind of person I want (and don’t want) to be.  Who do I want to be when the people around me are in need?  Do I want to be the person who texts from the grocery store?  The person who takes over chores without being asked? Or the person who is so unsure of what to say that she says nothing at all? (How many times have I been that person? Too many to count.)  It’s an obvious decision once you’re aware of it. It’s a choice that I did not even know I was making before this experience. Non-action is a decision. Generally it’s the worst decision.

I have come to believe more and more that it is our actions that define us, not our thoughts, our intentions, or even our feelings. Still, I wish I could go back in time two years and smack the feelings right out of myself. The silent self-satisfaction over a chocolate cake… how very shameful. There is no way to go back and offer to babysit, or cook a meal, or shop, or just ask (frequently) how things are going, and what can I do for you today to help? Or better, just do something that needs to be done, without asking. I can’t go backward and do that. Most disgraceful for me is that cancer is a very “visible” disease and I did my best to not see it. There is only one way to atone. Open my eyes for the rest of my life, and act on what I see, and even what cannot be seen. It is not a coincidence that every time I see James, he asks if there is anything he can do for us. My husband is sick and I am here now. Life is full of decisions. Today I am deciding to be grateful for the chance to have a do over. From now on I get to decide to be the kind of person I always hoped I was.

 

What Can I Do To Help?

Hormones Matter is unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research, and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. And perhaps most importantly, contribute.

To support Hormones Matter and our research projects – Crowdfund Us.

Image credit: Peakpx

License to use Creative Commons Zero – CC0

This post was originally published in December of 2013. 

Share

The Fluoroquinolone Time Bomb – Answers in the Mitochondria

16091 views

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 Lisa Bloomquist’s site, 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.

Yes, I would like to support Hormones Matter.

Image was created using Canva AI.

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

 

 

Share

Dear Epidemiologists, Consider Fluoroquinolones

3903 views

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).”

Longer-Term Studies are Needed

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 is 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. 

Photo by Aaron Burden on Unsplash.

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

Share

How Many Doctors Does it Take to Fix the Shower? A Tale of Fluoroquinolone Injury

6159 views

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.

Share

Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About

44449 views

I would like to share information on a little known, rare infection that all too often is overlooked or misdiagnosed, by the medical profession. It is an infection that shows no mercy to its victims and is deadly  in 67 to 90% of the cases, depending upon the severity of the infection. It is called Candida Glabrata (C.Glabrata), and I, like thousands of other victims, have had to learn the harsh realities of what this infection is capable of. I have also learned that it is an infection that our medical profession knows little about and our scientific community knows even less about how to beat it. In 2007, it was listed as the fourth leading cause of bloodstream infection in United States hospitals. The fact that the medical professionals know so little about how one contracts C. Glabrata, who gets it and when to look for it, persuaded me to speak out about this, so others do not suffer as I am.

What is C. Glabrata?

First C. Glabrata is a fungus from the Candidias family, which is the same family of candidias albican  (the yeast infection that most people are familiar with), however, there are several other forms in the Candidias family. These other forms are actually known as non-albicans and they are much more serious types of fungi. There are approximately five different species in this category with Glabrata being the most serious form.

What makes Glabrata so serious is the fact that it is only one of a few fungi that do not have hyphae, which are like the tenticles. Without hyphae, it is very difficult to culture, biopsy or see under a microscope. Due to the fact that it cannot be easily diagnosed, it is usually is not discovered in a person until they are very sick and by then it is a race against time to save the individual. The other problem with fungi without hyphae is that they are able to morph and adapt for survival. This means they have the ability to live in both alkaline and acidic environments. This is the part that makes them so deadly, because we only know how to kill fungus by changing the PH balance of the environment to basically make the living conditions unconducive to their life cycle. So, when you have a fungus like C. Glabrata that cannot be easily detected, diagnosed and then treated, you have what is known by the CDC as a deadly fungal infection.

The History of Glabrata

The fortunate thing about Glabrata is that it is a very rare form of fungus that is almost never seen in the general population. It was discovered during the 80’s when the AIDs population came to awareness. Prior to that, it had never been found in humans. Once the HIV population became infected, the fungi were impregnated in hospitals all over the country. Through the 90’s, the only people identified with this infection were the critically ill and immune compromised population, end stage HIV or end stage cancer patients in ICU units. With compromised immune systems these patients had no resistance to the fungus, and unfortunately, the mortality rate was 100%.

By the early 2000’s a new population of people were beginning to show up with C. Glabrata, only now it had moved beyond the immune comprised HIV and end-stage cancer patients. A study in 2010, found that 73% of C. Glabrata cases occurred in patients previously given fluoroquinolones. This new, previously healthy group of people falling ill to Glabrata had all been treated with a broad spectrum fluoroquinolone antibiotic often in conjunction with a steroid. Steroid treatment alone is a risk factor for the C. Glabrata infection. According to my current physicians, when fluoroquinolones are combined with steroids, the risk for contracting C. Glabrata increases significantly.

Research shows that the fluoroquinolones wipe out all gut flora (good and bad). When combined with immunosuppressive steroids, the patient’s ability to fight bad bacteria and fungus is compromised. When all the gut flora are killed, the first flora to grow back are those that are the strongest and most resilient. Much like weeds in your garden, fungus and bad bacteria grow at a faster rate and are stronger mutants than the good bacteria. If the patient was also prescribed steroids, their own immune system can no longer come in to fight off the bad gut flora. This leaves the gut vulnerable to serious infections especially fungal ones like Glabrata. Fluoroquinolones are one of the most potent gut flora destroyers on the market. There is no other class of antibiotics that so totally annihilate gut flora to the level that the fluoroquinolones do. Combining fluoroquinolones with steroids is a recipe for disaster.

In sum, there are only four ways to develop a C. Glabrata infection, end stage HIV, end stage cancer, patients with neutropenia – a genetic or chemo-induced condition that limits white blood cells needed to protect the body from fungal invasion – or by using a broad spectrum antibiotic, like the fluoroquinolones combined with a steroid.

Diagnosing Glabrata – Why So Many Victims of Glabrata Die

Glabrata is very difficult to diagnose, leaving the infection to take hold before it is recognized. The Glabrata fungus does not have hyphae and does not present like all other forms of candidias. This fungus does not produce a white cheesy like curd discharge from the gut / stool, vagina or penis. Instead, it produces a milky white to grayish thin discharge, often seen with bacterial infections. It also produces minor to severe swelling of the tissues and erythema (redness). The infection causes horrific burning (often described as grinding glass into the tissues and then pouring acid on them) with very little itching.

In the early stages, before a doctor thinks to look for C. Glabrata, the infection is frequently misdiagnosed as a bacterial infection. The patient is put on antibiotics; often the same antibiotics that created the susceptibility to the infection to begin with. When these fail again and again, the doctors are often at a loss as to what is going on, especially if the person was a young, healthy individual prior to being given antibiotics with steroids. Since most physicians have been trained to only look for Glabrata with HIV or seriously ill cancer patients, they never think to look for it. It usually takes until the person becomes critically ill with the infection before they realize that it is a fungal infection, at which point the doctor will order specific tests looking for a non albican fungus. In more than half of all cases of Glabrata it is not realized until autopsy. These are not like other fungal tests because they have to be grown in special agar (petry dishes) and then stained with special stains and then looked at under high powered microscopes. The final drawback is that this fungus needs 6 to 8 weeks to grow out, which costs precious time that most patients do not have.

Treating Glabrata

Once Glabrata is diagnosed the next hurdle is how to treat. Currently, there are only a few drugs that have any potential to kill it: Diflucan (fluconazole), Caspofungen and Amphotericin B. Each is problematic. Diflucan has to be used at ten times the normal level for months on end, to kill C. Glabrata. Most people are unable to tolerate this course of treatment and in 99% of cases it fails and in many cases, the fluconazole induces resistance to it and other azole fungicidesCaspofungen or microfungen, are additional options. They can cause serious liver and kidney problems, leading to failure of one or both organs. These drugs work in about 70% of all cases, but again must be used for months on end and many patients are unable to tolerate the treatment.

The last drug known to kill C. Glabrata is Amphotericin B. This drug is only used when the person is on their death bed because it is so toxic that it causes acidosis within minutes of being administered. Over 90% of patients go into multi-organ failure and die within three hours of infusion (discussions with my doctors). This drug too must be used for months on end to kill it.  Amphotericin B has a 90% success rate if the patient can survive the drug itself.

In very serious and resistant cases, Flucytosine is combined with the Amphotericin B. Flucytosine is thought to open the cell walls and lets the Amphotericin B in to kill. Flucytosine is an old chemo drug that is quite potent drug. When combined Amphotericin B, the results can be deadly. These are the only drugs known to treat this fungus.

Glabrata Becomes Resistant

As if Glabrata isn’t difficult enough to diagnose and treat, the fungus is very adaptive. If the patient survives the drugs, the fungus can, and often does, become resistant to the drug that it is being treated with, leaving the person with no options to kill it. This means that you get ONE shot with a medicine because it will become resistant the second time around. Glabrata has to be killed totally. If not and it returns, there is no treatment.

But as a fungus, Glabrata does not die on contact with the medicine. Let me explain this in an easier way. Look at it like this a bacteria is like a spider or bug, when you spray it with Raid it stops dead in its tracks and dies right there where you sprayed it. With fungus it is like a weed in your yard, when you spray it with weed killer the first day it begins to droop the next day it turns brown and by the third day it falls to the ground. If you then then pull the weed up and if you did not get the roots too within a week you will have a new weed back again. Fungi work in the same way, which is why it must be treated for months on end. Fungal infections are notoriously hard to treat and some of the most deadly infections to have. This is why Glabrata is fatal in 90% of all cases.

I Have a Glabrata Infection

I have a Glabrata infection and am fighting for my life. How did I contract this deadly fungal infection? I was prescribed Cipro plus a steroid for a misdiagnosed and assumed GI infection. I had a stomach bug, likely the flu, but since I have a diagnosis of IBS and the doctor was unable to see me for four days, she suspected I had a small intestine bacterial overgrowth (SIBO). I was prescribed an antibiotic, Cipro, plus steroids. That is, I was prescribed these meds on the assumption that I had a bacterial infection. I did not.

Three days after starting Cipro, I fell ill to Cipro toxicity. My gut flora were wiped out, I just didn’t know it yet and neither did my doctors. A week later, I found out that I never had an infection and didn’t need Cipro to begin with, but it was already too late for me. In the coming months, the GI bleeds began and other GI issues that would be misdiagnosed as Crohn’s Disease and bacterial infections ensued. It was not until last month that my doctors determined that all my problems were due to a deep seeded or disseminated infection with Glabrata.

We tried the Diflucan, which failed miserably. My WBC count and neutraphil count rose and I was now in serious trouble. We put a central line in and started the microfungen. After the first seven days, my counts dropped drastically, but by day nine, I began to step backwards. The fungus was morphing to survive and was becoming resistant to the drug. We are now looking at Amphotericin B. We will give it two more weeks and then make that call but it is not looking good right now. My symptoms have begun to ramp up again. I know the odds are against me with less than a 10% cure rate, I am fighting an uphill battle but I need to win this one for my life!

Why I Am Telling My Story

Patients must understand the dangers of this class of drugs especially when combined with steroids, because many doctors do not! Fluoroquinolones are the most commonly prescribed antibiotic in the US and combining them with steroids seems to happen frequently.

Also know that 78% of the time Glabrata starts in the gut. Other times it starts in PIC and central lines. In either case, one initiated, it infiltrates the prostrate for men and the vagina for women. It has been known to seed itself any organ throughout the body. If you are suffering with an infection in any of these areas that does not respond to antibiotics and you are also suffering with GI issues, you need to ask your doctor about checking you for a fungal infection, especially if you have used a fluoroquinolone antibiotic with a steroid prior to the onset.

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. 

 

Featured image: GMS stained skin punch biopsy demonstrating fungal spores of C. glabrata, eScholarship, University of California.

This story was published originally in December 2013.

Share
1 2 3