Levaquin

Repeated Use Doesn’t Make Fluoroquinolones Safe

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“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.

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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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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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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).”

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. 

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

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Fluoroquinolone Antibiotics Associated With Nervous System Damage

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The labels for fluoroquinolone antibiotics, Cipro, Levaquin, Avelox, etc. have two black box warnings, warnings reserved for only the most serious and severe adverse effects of drugs:

Fluoroquinolones 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.

Fluoroquinolones may exacerbate muscle weakness with myasthenia gravis.  Avoid fluoroquinolones in patients with a known history of myasthenia gravis.

It is later noted that death can result from administration of fluoroquinolone antibiotics in people with myasthenia gravis, hence the warning that these drugs should be avoided in that population.

Central and Peripheral Nervous System Damage

In addition to the black box warnings, there is a 212 word warning of the adverse effects of these drugs on the central nervous system including, “dizziness, confusion, tremors, hallucinations, depression, and, rarely, psychotic reactions have progressed to suicidal ideations/thoughts and self-injurious behavior such as attempted or completed suicide” and seizures.

On August 15, 2013, the FDA announced that they were changing the warning labels for fluoroquinolones to more adequately describe the risk of permanent peripheral neuropathy.  The new warning labels will now note that peripheral neuropathy symptoms including “pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position” can be caused by fluoroquinolones. They also note that peripheral neuropathy “can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped or be permanent.”

Label Changes Based on Patient Reports

Also noted in the August 15th announcement was that the FDA was adding the warning of permanent peripheral neuropathy based on patient reports to their Adverse Event Reporting System (AERS) database. They note that, “the recent AERS review evaluated cases of fluoroquinolone-associated peripheral neuropathy with an outcome of ‘disability,’ reported between January 1, 2003 and August 1, 2012. The review showed a continued association between fluoroquinolones use and disabling peripheral neuropathy.”

Cipro was patented in 1983.  It took 30 years of people reporting their peripheral neuropathy to the FDA for them to add an appropriate warning to the label.

Additional Warning – Autonomic Nervous System Damage

Since the FDA is slow on the uptake of vital information that should be listed on the warning labels of drugs, I will let you know that, in addition to the central nervous system and the peripheral nervous system, the autonomic nervous system is also damaged by fluoroquinolone antibiotics. The autonomic nervous system, also known as the involuntary nervous system, is composed of the nerves that control heart rate, digestion, respiratory rate, salivation, perspiration, pupil dilation, urination and sexual arousal.  Damage to all of these body parts, controlled by the autonomic nervous system, are associated with fluoroquinolones.

How do I know this?  In addition to the patient led research and patient descriptions of autonomic system damage, I know this by personal experience. Every one of those autonomic functions was negatively affected when I had a severe adverse reaction to Cipro that began December of 2011.

Though we don’t yet have scientific proof, as no studies have been published, I have personally heard from hundreds of patients experiencing similar symptoms. Since it took 30 years for the FDA to recognize the peripheral neuropathy, I wouldn’t be too keen to disregard the possibility that the autonomic systems is also affected.

Why hasn’t the FDA investigated autonomic neuropathy potentially associated with the fluoroquinolones?  Perhaps because the malfunctions of the autonomic nervous system are very difficult to describe and detect and, though they are common among those who are suffering from Fluoroquinolone Toxicity Syndrome, they may not have risen to the top of the list of complaints in the AERS database.  However, seeing as damage to the autonomic nervous system is serious and potentially life-threatening, the FDA should connect the dots and add an additional warning of autonomic nervous system damage to fluoroquinolone labels.

Overall Nerve Damage

Since multiple nervous systems are damaged by fluoroquinolones, it leads me to believe that fluoroquinolones damage nerves generally.  Some early theories suggest that the fluoroquinolones induce the axons of nerves to degenerate and damage the myelin sheath protecting the nerves. Though I have several theories as to the damage mechanism for fluoroquinolones, anything conclusive other than reporting on what I experienced and have seen, is beyond my level of expertise. I do know that symptoms of nervous system damage are suffered from by the victims of fluoroquinolones and that they suffer mightily, sometimes permanently.

The possibility of fluoroquinolone toxicity is serious. With 26.9 million prescriptions for fluoroquinolone antibiotics dispensed in 2011 alone and the rate of fluoroquinolone induced peripheral neuropathy suspected at 1 per 6000, the number of potentially injured people is staggering. Worse yet, a 2011 study published in BioMed Central, found that 39% of fluoroquinolone therapy in hospital patients was unnecessary. Who knows what the rate of unnecessary fluoroquinolone use is in the general population.

Fluoroquinolones are dangerous antibiotics that are often used to treat sinus infections, urinary tract infections, upper respiratory infections, prostate infections, etc., infections that could be treated with a safer antibiotics. It is absurd and wrong for people to suffer from chronic and often debilitating nerve damage and other health conditions as a result of a prescription antibiotic, especially when other, safer alternatives can be used.

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.

Image by brgfx on Freepik.

This post was published previously on Hormones Matter in 2013.

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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 tendonopathy, 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 tendonopathy – 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. 

Photo by Bruno Guerrero on Unsplash.

This article was published previously in October 2013.  

 

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Fluoroquinolones 101 – Antibiotics to Avoid

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Fluoroquinolone antibiotics, Cipro, Levaquin, Avelox, etc. are broad-spectrum antibiotics used to treat a variety of infections, from urinary tract infections to anthrax and everything in between.  The first quinolone created was Nalidixic Acid which was discovered by George Lesher in 1962.  (Nalidixic Acid was added to the OEHHA prop 65 list of carcinogens in 1998.) Cipro (ciprofloxacin) is a second generation fluoroquinolone patented in 1983 by Bayer, Levaquin (levofloxacin) is a third generation fluroquinolone  patented in 1987 by Ortho-McNeil-Janssen (a division of Johnson & Johnson), and Avelox (moxifloxacin) is a fourth generation fluoroquinolone patented in 1991 by Bayer.

Fluoroquinolone Antibiotics – Still on the Market

Of the 30 quinolones that have made it to market since the 1980s, all but 6 have either been removed from the US market or have severely restricted use.

The fluoroquinolone antibiotics that are still on the market are some of the most commonly prescribed antibiotics. Per the FDA, “Approximately 23.1 million unique patients received a dispensed prescription for an oral fluoroquinolone product from outpatient retail pharmacies during 2011,” and “Within the hospital setting, there were approximately 3.8 million unique patients billed for an injectable fluoroquinolone product during 2011.”

When used properly, such as in cases of life-threatening hospital acquired pneumonia, fluroquinolone antibiotics can save lives.

Fluoroquinolone Antibiotic Side-Effects and Adverse Reactions

When used improperly, fluoroquinolone antibiotics can needlessly cause devastating side-effects.  Devastating side-effects can also occur when fluoroquinolone antibiotics are used properly, but the devastation can be justified by weighing it against the alternative – death.  In 2001, Dr. Jay S. Cohen published an article on the severe and often disabling reactions some people sustained  as a result of taking a fluoroquinolone antibiotic.  Dr. Cohen says,

“It is difficult to describe the severity of these reactions. They are devastating. Many of the people in my study were healthy before their reactions. Some were high intensity athletes. Suddenly they were disabled, in terrible pain, unable to work, walk, or sleep.”

Dr. Cohen’s study of 45 subjects suffering from Fluoroquinolone Toxicity Syndrome, a name that I’m pushing for, (without an official name, it is difficult get the word out) showed that they had the following symptoms:

  • Peripheral Nervous System: Tingling, numbness, prickling, burning pain, pins/needles sensation, electrical or shooting pain, skin crawling, sensation, hyperesthesia, hypoesthesia, allodynia (sensitivity to touch) numbness, weakness, twitching, tremors, spasms.
  • Central Nervous System: Dizziness, malaise, weakness, impaired coordination, nightmares, insomnia, headaches, agitation, anxiety, panic attacks, disorientation, impaired concentration or memory, confusion, depersonalization, hallucinations, psychoses.
  • Musculoskeletal: Muscle pain, weakness, soreness, joint swelling, pain, tendon pain, ruptures.
  • Special Senses: Diminished or altered visual, olfactory, auditory functioning, tinnitus (ringing in the ears).
  • Cardiovascular: Tachycardia, shortness of breath, hypertension, palpitations, chest pain.
  • Skin: Rash, swelling, hair loss, sweating, intolerance to heat and\or cold.
  • Gastrointestinal: Nausea, vomiting, diarrhea, abdominal pain.

When a fluoroquinolone antibiotic triggers a toxic reaction in a person, multiple symptoms are often experienced. I experienced all of the symptoms that are italicized.

Fluoroquinolone Antibiotic Damage – Technical Aspects

Fluoroquinolones are eukaryotic DNA gyrase and topoisomerase inhibitors very similar to many antineoplastic agents (source).  What this means in plain English is that these drugs work the same way as chemotherapeutic drugs; they disrupt DNA and lead to destruction of cells.  A recent (2013) study conducted by a team of scientists at the Wyss Institute for Biologically Inspired Engineering at Harvard University Studies showed that Ciprofloxacin, along with a couple of other non-fluoroquinolone antibiotics, causes oxidative stress and mitochondrial malfunction. A 2011 study published in the Journal of Young Pharmacists found that, “There is significant and gradual elevation of lipid peroxide levels in patients on ciprofloxacin and levofloxacin.”  They also found that “There was substantial depletion in both SOD (superoxide dismutase, “a free radical scavenging enzyme”) and glutathione levels” and that “On the 5th day of treatment, plasma antioxidant status decreased by 77.6%, 50.5% (and) 7.56% for ciprofloxacin, levofloxacin and gatifloxacin respectively.” The study also notes that administration of fluoroquinolones leads to a marked increase in the formation of Reactive Oxygen Species (ROS) and that “reactive free radicals overwhelms the antioxidant defence, lipid peroxidation of the cell membrane occurs. This causes disturbances in cell integrity leading to cell damage/death.”

How Many People are at Risk?

The exact rate of adverse reactions to fluoroquinolones is difficult to determine.  Studies of adverse reactions to fluoroquinolones have noted that, “During clinical trials, the overall frequencies of adverse effects associated with (fluoroquinolones) to vary between 4.4 and 20%.”  Just the fact that the spread is so large, a 15.6% spread in frequency of adverse reactions is a HUGE difference, implies that the actual occurrence of adverse reactions is difficult to establish or unknown.

With the FDA figures above noting that 26.9 million unique patients were given fluoroquinolones in 2011, if you just take the conservative adverse reaction figure of 4.4%, you’ll get a horrifying number of people with adverse reactions in 2011 alone – 1,183,600 people.  20% of 26.9 million is 5,380,000 people adversely effected.  That is scary.  Those numbers are truly frightening given the severity of the adverse effects described above.

Fluoroquinolone Toxicity Syndrome

I see fluoroquinolone toxicity everywhere, and even I think that those numbers are high for severe, disabling reactions like mine where multiple symptoms develop simultaneously.  Not everyone who has an adverse reaction to a fluoroquinolone has a reaction like mine, or even develops Fluoroquinolone Toxicity Syndrome – thank God.  Many people have milder reactions.  Milder symptoms include any one of the symptoms listed above as well as  diarrhea, vomiting, mild tendonitis, decreased energy, painless muscle twitches, memory loss, urgency of urination, or any number of reactions that the body may have to a massive depletion of antioxidants and increases in lipid peroxide levels and reactive oxygen species production.

Even though severe adverse reactions to fluoroquinolones antibiotics can be painful and disabling for years, many (possibly most, but certainly not all) people recover from Fluoroquinolone Toxicity Syndrome with time.  I anticipate that I will be fully recovered 2 years after my reaction started. Sadly, there are some people who don’t recover.  They suffer from chronic pain, disability, impaired cognitive abilities, etc. permanently.

It is absurd, to say the least, that an acute problem, an infection, that can easily be taken care of with administration of an antibiotic that is not a fluoroquinolone, is converted into a chronic problem, a  syndrome that can disable a person for years, by a prescription ANTIBIOTIC, used as prescribed. In my case, a urinary tract infection that could have likely been taken care of with macrobid or even cranberry juice and d-mannos, was treated with Cipro which left me unable to do many physical and mental tasks that I had previously been able to do with ease. It’s a crazy, absurd situation.  It’s absurd and it’s wrong.

Some Antibiotics are More Dangerous than Others

The bottom line is that these popularly prescribed antibiotics are dangerous drugs that have caused thousands of people to suffer with a myriad of maladies. Undeniably, they have their place, in treating life-threatening infections.  Unfortunately, they are not being reserved for use in life-threatening situations and people are being hurt after taking them for simple sinus, urinary tract, bronchial and prostate infections. A strict and rigorous protocol needs to be established to limit the damage that they cause; because it’s not right to maim and disable people to treat their sinus infections.

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.

This article was published previously in August 2013 and is being re-posted in light of the recent press coverage warning of fluoroquinolone dangers.

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Fluoroquinolone Antibiotic Dangers: Why Didn’t They Tell Me?

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Hundreds of articles about the harmful effects of fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) have been published in medical and scientific journals, yet most of the articles have been ignored by the medical community and downplayed by the FDA. I can only surmise that the ignorance around the dangers of fluoroquinolones is because they are used as antibiotics and antibiotics are “supposed” to be safe and only damage bacteria, while leaving human cells unscathed. Or maybe it is because of the constant repetition of the baseless statement that fluoroquinolones have an “excellent record of safety and tolerance;” a statement that is only true if delayed reactions, tolerance thresholds and epigenetic effects are not taken into consideration.

Regardless of the motivations of those who are ignoring how destructive fluoroquinolones are, valuable information about the safety (or rather, the dangers) of fluoroquinolones as a class of drugs, have been ignored. Warnings about the toxicity of fluoroquinolones have been noted in journal article after journal article, yet they are still some of the most popular antibiotics prescribed.

Caution, prudence and thoughtfulness should be exercised when prescribing drugs that are as dangerous and destructive as fluoroquinolones. Fluoroquinolones are chemo drugs that are being mis-prescribed as antibiotics. Before filling a prescription for a fluoroquinolone to treat a sinus infection, or to use prophylactically for traveler’s diarrhea, or putting in your child’s ear to treat an ear infection, I encourage you to note the cellular destruction done by fluoroquinolones. Neither the FDA nor the average doctor is properly warning patients about the dangers of fluoroquinolones. Unfortunately, it is up to patients to inform themselves and gain proper warnings about the consequences of these dangerous drugs.

Fluoroquinolones Damage DNA

Back in 1992, when fluoroquinolones were first gaining popularity, Scientists raised concerns about their safety in an article published by the Proceedings of the National Academy of Sciences of the United States:

“the interaction (of fluoroquinolones) with DNA is still of great concern because of the possible long-term genotoxicity of quinolone compounds, which are increasingly adopted as first-choice antibiotics for the treatment of many infections, and because it addresses the real mechanism of action of this class of molecules.”

Fluoroquinolones are topoisomerase interrupters, meaning that their mechanism of action is described as, “The bactericidal action of ciprofloxacin results from inhibition of the enzymes topoisomerase II (DNA gyrase) and topoisomerase IV (both Type II topoisomerases), which are required for bacterial DNA replication, transcription, repair, and recombination.” (Cipro warning label).

Very little, if any, concern over the possible genotoxic effects of fluoroquinolones were expressed to the public as they gained popularity and uses were expanded in the early 1990s. The warnings and concerns expressed by the scientists quoted were ignored.

It is noted in Molecular Pharmacology, “Delayed Cytotocicity and Cleavage of Mitochondrial DNA in Ciprofloxacin Treated Mammalian Cells” that fluoroquinolones “cause a selective loss of mitochondrial DNA (mtDNA)” and “The loss in mtDNA was associated with a delayed loss in mitochondrial function.” Additionally, it is stated that “ciprofloxacin induces reversible double-stranded breaks in nuclear DNA.” Studies have shown that both mitochondrial and nuclear DNA is adversely affected by fluoroquinolones, yet those studies have not gained traction in the medical community and have effectively been ignored.

The intergenerational effects of depleting DNA with fluoroquinolones is unknown at this time (I surmise that this is because these studies have been ignored, intergenerational studies are difficult to do, and funding for them is hard to come by). However, it is known that, “a number of human mitochondrial genetic diseases that are clinically discreet are being diagnosed at unexpected rates” (source). Additionally, in an article published in Nature in 2013 entitled, “Topoisomerases facilitate transcription of long genes linked to autism” it was noted that, “Our data suggest 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 the expression of long ASD (autism spectrum disorder) candidate genes.” Fluoroquinolones are topoisomerase interrupting chemicals.

Thus far, neither the increase in mitochondrial genetic diseases nor the link between topoisomerase interrupting drugs and autism have been acknowledged by the medical community, the FDA or the general public.

Fluoroquinolones Damage Mitochondria

The deleterious effects of fluoroquinolones on mitochondria have been noted repeatedly in journal articles, and even by the FDA.

In Science Translational Medicine, “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells,” it is noted that bactericidal antibiotics, including ciprofloxacin, a fluoroquinolone, “damage mammalian tissues by triggering mitochondrial release of reactive oxygen species (ROS).” Even the FDA acknowledges that fluoroquinolones cause mitochondrial damage. In their April 27, 2013 Pharmacovigilance Review, “Disabling Peripheral Neuropathy Associated with Systemic Fluoroquinolone Exposure,” the FDA notes that the mechanism for action through which fluoroquinolones induce peripheral neuropathy is mitochondrial toxicity. The report says:

“Ciprofloxacin has been found to affect mammalian topoisomerase II, especially in mitochondria. In vitro studies in drug-treated mammalian cells found that nalidixic acid and ciprofloxacin cause a loss of mitochondrial DNA (mtDNA), resulting in a decrease of mitochondrial respiration and an arrest in cell growth. Further analysis found protein-linked double-stranded DNA breaks in the mtDNA from ciprofloxacin-treated cells, suggesting that ciprofloxacin was targeting topoisomerase II activity in the mitochondria.”

Fluoroquinolones are very, very bad for mitochondria. As the engines of our cells, healthy mitochondria are very necessary for healthy cells. Mitochondrial dysfunction is connected with many chronic diseases, including autismCFS/MEfibromyalgiaAlzheimer’s DiseaseParkinson’s Disease,multiple sclerosis, etc.

Fluoroquinolones Alter Neurons

Fluoroquinolones downgrade GABA-A receptors and can lead to a variety of CNS related symptoms of fluoroquinolone toxicity such as “dizziness, confusion, tremors, hallucinations, depression, and, rarely, psychotic reactions have progressed to suicidal ideations/thoughts and self-injurious behavior such as attempted or completed suicide,” as well as “nervousness, agitation, insomnia, anxiety, nightmares or paranoia” (Cipro warning label).

It was concluded in an article in The Journal of Neurophysiology in 1991 that, “in the presence of an anti-inflammatory agent, the quinolone antibiotics decrease the affinity of GABAA receptors, the result being induction of epileptogenic neurotoxicities.”

GABA receptors
Copyright 2009 Pharmacy Weekly, Inc. Printed with permission.

An article in Pharmacology Weekly that was published in 2009 notes that fluoroquinolones “modulate the activity of the gamma-aminobutyric acid (GABA)-A receptor” leading to the CNS side-effects of fluoroquinolones that include “tremors, restlessness, anxiety, confusion, paranoia, insomnia, etc.” and that “the presence of an NSAID or NSAID metabolite can significantly augment this effect and result in an even greater inhibition of GABA-A receptor activity” and lead to seizures, in addition to the other CNS effects listed. But, in 2015, people still are not systematically warned about the possibility of fluoroquinolone induced “nervousness, agitation, insomnia, anxiety, nightmares or paranoia” and NSAIDs are still prescribed concurrently with fluoroquinolones, despite documentation that the combination of fluoroquinolones and NSAIDs downgrade important neurotransmitters.

Though the symptoms that arise when GABA-A receptors are downgraded are noted on the warning labels for fluoroquinolones, nowhere on the warning label does it say that these effects can be long-lasting, or even permanent.

Generally, the effects of fluoroquinolones on neurotransmitters are ignored, and ensuing anxiety, insomnia and psychiatric illnesses are assumed to have nothing to do with the antibiotics that were prescribed for a sinus or urinary tract infection. The research and the warnings, have been ignored.

Fluoroquinolones Damage Cells

In The Journal of Medical Microbiology it was noted that:

Dougherty & Saukkonen (1985) showed that inhibition of DNA synthesis by nalidixic acid, a DNA gyrase inhibitor, results in morphological changes consistent with a loss of membrane integrity and leakage of intracellular components. Similar results were presented by Wickens et al. (2000), who noticed a decrease of both membrane integrity and membrane potential after exposure of E. coli to CIP. One of the proposed explanations of this finding is that, as a result of processes induced by inhibition of DNA replication, cells lose their capacity to synthesize necessary components and to maintain the proper membrane structure (Dougherty & Saukkonen, 1985).”

Naladixic acid is the root component of all fluoroquinolones.

In case it needs to be said, cellular membrane integrity and keeping intracellular components inside cells, are important. It is important for cells as a whole, and for organelles within cells such as mitochondria. As the importance of the microbiome is being uncovered, the importance of the bacteria in our guts maintaining cellular integrity is slowly being realized as well.

Fluoroquinolones are Dangerous Drugs

The FDA warning label for Cipro/ciprofloxacin is 43 pages long. The serious and severe adverse effects listed on the warning label are due to the cellular destruction done by Cipro. Other fluoroquinolones (Levaquin and Avelox are popular) have similar safety/danger profiles.

Though no antibiotics are without consequence, the cellular destruction done by fluoroquinolones makes them far more dangerous than other antibiotics. Fluoroquinolones should be categorized as chemo drugs along with all other topoisomerase interrupters. Please be wary and cautious with fluoroquinolones, and don’t use them unless it is absolutely necessary.

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.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones MatterTM is completely 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.

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

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The Doctor Said Not to Worry About Levaquin Warnings

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I was floxed on October 8 of 2012. I was given Levaquin while on high dose of prednisone as a prophylactic measure during an asthma flare. I had been on a 10 day course of 60mg/day prednisone, was off a week, and then had to go back on for an asthma flare. The asthma doctor gave me Levaquin as a “prophylactic measure” because she was afraid I would pick up some kind of infection at work. I had no infection at the time.

When I filled the prescription, the pharmacist warned me about the tendon issues with Levaquin, especially since I was over 60, and on prednisone. He said I should drink plenty of water and I should be fine. The scrip came with a 7-page patient medication guide. On the first page was “What is the most important thing I need to know about Levaquin?”  It included the warning about tendon issues.

I called the doctor back and said I didn’t think I should take the drug.

She said they use it this way all the time and no one ever really has a problem. So I took the first pill and went to bed.

My Levaquin Reaction

I woke up 4 hours after taking the first pill, with tremors, ringing in my ears that sounded like I was in a tent full of cicadas, and audial hallucinations that sounded like the soundtrack to Rosemary/s Baby (the evil Roman chanting). I was also seeing things out of the corner of my eyes. I called the doctor the next day to report the symptoms.

She said, “Oh it can’t be the Levaquin, it must be the prednisone. It can make you jumpy.”

I replied that I have been taking prednisone all my life, and never had anything like this. I took the second pill that night, anyway.

The side effects got worse and I finally read all 7 pages of the patient guide. I realized that I was suffering the CNS and peripheral neuropathy issues, and decided I would quit the Levaquin. I called the doctor the next morning and she wanted to give me another antibiotic.

I said “but I don’t actually have an infection, right?”

She said, “yes.”

I said no more antibiotics.

The Next Few Weeks Post Levaquin Toxicity

The audial and visual hallucinations went away after two days, but the tinnitus and the tremors remain to this day.

Eight days later I left for a long-planned trip to Florida for wildlife photography. I woke up in the middle of the night in a hotel room 1100 miles from home with my whole body on fire, pain in my neck, shoulders, elbows, wrists, hips, knees and ankles feeling like they had hot pokers sticking through. I had burning electrical sensations in my hands and feet, a ring of electricity running around the top of my head. I could barely walk. My thighs felt like I had tried to run a marathon with no warm up and that they were going to collapse under me at any moment. Prior to this, I was used to hiking all day carrying 25 lbs of photo equipment through forests, swamps, etc.

Post Levaquin Insomnia and Sleepwalking

I won’t even try to describe the next 10 days in Florida before I could get home, but needless to say I did not do a lot of wildlife photography that trip. I also developed insomnia. I could not sleep more than 1-2 hours at a time, and I would have very vivid dreams. I found myself sleepwalking, and having nightmares, which continued when I returned home. I would find myself in the kitchen making coffee at 1:30 AM because the dream that the alarm had gone off was so vivid. One night, I woke up on my deck in my underwear and barefoot at 2 AM in below zero weather (with snow on the deck) smoking a cigarette, because I was dreaming I was back in Florida at the non-smoking condo. The side effects of fluoroquinolone antibiotics are worse than the symptoms of the illnesses for which they are prescribed. This is not appropriate.

In the year since my reaction, I have been through neurologists, rheumatologists, physical therapy, and psych/neuro testing for the loss of memory and brain function. I have been diagnosed with essential tremor and fibromyalgia and osteoarthritis, with brain fog, reduced cognitive functioning, insomnia, high blood pressure, to name a few. I also have ongoing stomach issues. Here too, the medications that have been prescribed for the adverse effects of Levaquin – the antidepressants, anti-seizure medications, benzodiazepines and pain killers – have side effects far worse than what I experienced post Levaquin reaction and do nothing to heal my body. They only mask my symptoms and don’t even mask them that well.

Going Forward Post Levaquin Toxicity

I use turmeric extract 3 times a day for pain management. The pain never goes away totally, but the turmeric keeps it down to a dull roar. The hot poker sensation that I once felt, is now less frequent. I always have pain though. The sensation of imminent collapse in my thighs never goes away, even though I am  back to  walking 3 miles a day. The tremors have actually progressed. The tremors and the brain fog (memory loss, loss of words, losing track of what I am doing, loss of ability to multi-task ) have kept me unable to work since May of 2013.  And, I still can’t sleep more than 2 hours at a time or with sleep aids 3-4 hours. Here, in December of 2013, I am still disabled. My GP is also certified in Functional Medicine, and we are working with a course of supplementation based on blood tests for oxidative stress and dietary changes. We are following Dr. David Perlmutter’s Grain Brain Diet to improve neurological issues. We are both researching all of the possibilities we can, and hoping each day for some kind of breakthrough for this incredible illness.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones MatterTM is completely 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. For more information contact us at: info@hormonesmatter.com.

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

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Truth Seeker or Conspiracy Theorist? You Decide.

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I’ve always believed that the simplest answers to most problems are the ones that are closest to the truth. I don’t particularly like conspiracy theories. I generally find them to be offensive. So as not to offend the people who believe in conspiracies, I’ll refrain from giving an example, but I tend to think that what you see is what you get and that there aren’t any evil masterminds controlling the world. I don’t think that there is anyone smart enough to have evil plots that control the world. Rather, I believe that there are complex feedback loops that keep certain parties in power and others powerless. Of course, those in power work to protect their power, sometimes through greed, lies and cover-ups, but it’s not necessarily a conspiracy per se. It’s just people being people and trying to maintain the status quo because people generally don’t like change (and a million other complex psychological and sociological reasons why people like to keep those in power who are in power and those without power without power).

Then I got sick. I got sick because a prescription pharmaceutical, an antibiotic no less (Cipro), hurt me.  I was poisoned by a prescription drug that is considered to have an “enviable record of safe and efficacious use.” (1)  I started screaming about how it’s not okay to take away people’s ability to walk, sleep, work, etc. to treat their sinus or urinary tract infections.  I started screaming about how fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin and a few other less commonly used drugs) are dangerous and over-prescribed. I started researching how fluoroquinolones work and was appalled to find that they dismantle and disrupt replication of DNA.  I began making connections between the side-effects the fluoroquinolones, and the various diseases that fluoroquinolone toxicity mimics.

Diseases of Fluoroquinolone Toxicity

Fluoroquinolones cause peripheral neuropathy (2), peripheral neuropathy could easily be mistaken for Fibromyalgia. Fluoroquinolones cause destruction of tendons (3) and cartilage (4), both of which are found in the joints, and thus fluroquinolone toxicity could be misdiagnosed as Rheumatoid Arthritis. Fluoroquinolones have many psychological side-effects including anxiety, depression and even psychosis (5), and thus they may be connected lead to psychiatric disorders. I found a study that connected topoisomerase interrupting drugs (6) (fluoroquinolones are topoisomerase interrupters (7), along with several chemotherapy drugs) with Autism. A conspiracy theorist was born.

Fluoroquinolone antibiotics can take an acute infection and convert it into a chronic illness (Fluoroquinolone Toxicity Syndrome). The new, chronic illness likely will be misdiagnosed and not recognized as a drug side effect, and the treatment of the misdiagnosed disease often leads to prescriptions for additional drugs. And, even though that line of thinking leads to more profits for Big Pharma, I don’t think that it’s a conspiracy. I don’t think that it’s intentional, even on the part of the companies that initiate and perpetuate it, Bayer and Johnson & Johnson (J&J). Though making people chronically ill through an antibiotic that is viewed as benign by almost everyone is convenient and profitable for them, I don’t think that it’s their intention. Perhaps I’m naive.

Somewhere between naively believing that Bayer and J&J have no idea what they’re doing, and pessimistically believing they are poisoning us all to turn us into lifelong customers, lies the truth.

The Truth about Fluoroquinolones

The truth, especially when dealing with something as complicated and multifaceted as biochemistry, cellular biology and genetics, is very difficult to comprehend. But the fact that it is too difficult for most of us to understand does not mean that there is no truth. The correct answers are probably not the easiest answers. They don’t fit into a box of good or evil. They aren’t linear. The truth about fluoroquinolones involves inconvenient things like delayed reactions, tolerance thresholds, system-wide cellular destruction that results in a wide array of disease states, enzyme depletion, etc. The truth about fluoroquinolones defies common sense because our common sense tells us that antibiotics are benign, that drug side-effects are rare, that when side-effects happen they’re treatable and transient, etc.  That “common sense” approach, unfortunately, is not the truth.

The truth is that fluoroquinolones disrupt and dismantle DNA.  This has been shown repeatedly.  Per a 1998 study entitled “The Mechanism of Inhibition of Topoisomerase IV by Quinolone Antibacterials,” Fluoroquinolones are “among the first antibacterial agents that efficiently inhibited DNA replication.”  (8).  The mechanism for action for Ciprofloxacin, as listed on the FDA warning label is, “The bactericidal action of ciprofloxacin results from inhibition of the enzymes topoisomerase II (DNA gyrase) and topoisomerase IV (both Type II topoisomerases), which are required for bacterial DNA replication, transcription, repair, and recombination.” (7) Disrupting the DNA replication process is how these drugs work (or at least part of how they work).  Denying that fluoroquinolone antibiotics damage DNA because it’s not a pleasant thing to acknowledge, is futile and it does not get us closer to the truth.

Very little is known about the consequences of disrupting DNA replication through pharmaceuticals. The truth that fluoroquinolones disrupt and dismantle DNA is only part of the puzzle; it is only part of the truth. As complicated and poorly understood as the effects of these drugs on DNA are, there are still multiple levels of questions regarding the effects of fluoroquinolones on the human body. Some of the questions, answers and truths likely lie in understanding the effects of these drugs on mitochondria. A thorough understanding of article “Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria” (9) and how it relates to fluoroquinolones will likely give you some answers about how these drugs do damage. There is evidence that fluoroquinolones cause cerebellar ataxia (10). The carboxylic acid molecule that is part of fluoroquinolone drugs likely leads to the formation of hazardous acyl glucuronoids (11). The interaction between broken mitochondrial DNA, acyl glucuronoids and cerebellar ataxia, combined with other ill understood and complex factors, is probably where the truth lies. It is hugely complex. It is impossible for the average person to comprehend and it is difficult for even the smartest person to understand. So, instead of seeking understanding and truth, the majority has chosen to ignore the fact that no one knows how these chemicals work in the human body and what their consequences are. We will take them because we know one small element of what they do – they kill bacteria – and believe that all other effects of these drugs are coincidental, accidental or rare.

Willful Ignorance about Fluoroquinolone Dangers

Willful ignorance has taken over, and faith-based assumptions about the good or evil that the medical system is have come to dominate the conversation. The established medical system is the entrenched party with the power, so those who support it are the majority; they are those with “common sense.” Those who rebel against the assumptions that the medical system is doing good are accused of being conspiracy theorists or worse. No one is really qualified to say that they have a position based on truth though, because there are too many unknown variables to know the truth (at this time). No one, not even the smartest researchers and scientists, fully know how fluoroquinolones, and probably many other drugs, affect every system in the human body. The human body is too complex and too little is known (at this time) about it, and how each of its systems interact, for anyone to truly know how everything works together. So little is known about the human body that ligaments, something that you can see with the naked eye, are still being discovered (12). If we don’t even know every ligament in the body, you can certainly bet that we don’t know every enzyme or neural pathway. Yet enzymes, neural pathways, mitochondrial DNA and other really important parts of human physiology are being disturbed by pharmaceuticals. And people are getting sick because of it.

Though the truth about how adverse drug reactions occur is difficult to ascertain, it should be sought. Questions should be asked. Experiments should be done. The effects of drugs on all bodily systems should be explored.  Perhaps answers to difficult questions about how drugs effect mitochondria, neurons, enzymes, etc. should be asked before drugs are released into the public.

Back in 1992, when fluoroquinolones were first gaining popularity, Scientists raised concerns about their use in an article published by the Proceedings of the National Academy of Sciences of the United States:

the interaction (of fluoroquinolones) with DNA is still of great concern because of the possible long-term genotoxicity of quinolone compounds, which are increasingly adopted as first-choice antibiotics for the treatment of many infections, and because it addresses the real mechanism of action of this class of molecules.” (13)

The question hasn’t been asked though.  People have been stuck on the faith-based assumption that fluoroquinolones have “enviable record of safe and efficacious use” because the only side-effects that they’re willing to see are allergic reactions. They have been intent on willful ignorance. Willful ignorance protects them. It keeps them from seeing that in frivolously over-prescribing dangerous and poorly understood drugs, we may have damaged our precious DNA, and that the consequences of doing so may be many of the “mysterious” systemic diseases that plague us.

There is a fine line between screaming about willful ignorance on the part of the majority and being a conspiracy theorist.  I’d like to think that I am reasonable; that my assertions are backed up by scientific findings, and that I’m right.  Of course, all conspiracy theorists also think that they’re right, so my conviction does very little to convince naysayers.  I hope that my screams are heard though. I hope that some people in power do something to stop the foolish over-use of these DNA damaging drugs.  I hope that it’s not too late to be prudent and cautious.

The real world is complicated. Sometimes human bodies work in ways that aren’t simple.  Sometimes problems are complex and difficult to understand. Sometimes pharmaceuticals work, or don’t work, in ways that are poorly understood. The power to do a massive amount of both good and harm is possible with modern medicine. Perhaps it is time that we start admitting that the harm that some drugs do is disproportionate to the good that they do. Perhaps it is time that we start recognizing that adverse drug reactions are not always immediate or easy to remedy. Perhaps it is time that we start insisting that the mechanisms of action for drugs be fully understood, at least by Scientists, before they are mass marketed to the public.

I don’t think that these suggestions and assertions make me a conspiracy theorist.  But if they do, so be it. The notion that the pharmaceutical/medical system is killing and sickening innocent people is a “conspiracy theory” that I know to be true.  So I will continue to fight to expose it, whatever the consequences may be.

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.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

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References

  1. Expert Review of Anti-Infective Therapy. Levofloxacin: update and perspective on one of the original respiratory quinolones.
  2. FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection.
  3. Quinolone Arthropathy in Animals Versus Children.
  4. Levofloxacin-induced acute anxiety and insomnia.
  5. Topoisomerases facilitate transcription of long genes linked to autism.
  6. FDA: Flouroquinolone warning label.
  7. The Mechanism of Inhibition of Topoisomerase IV by Quinolone Antibacterials*
  8. Mechanisms of Pathogenesis in Drug Hepatotoxicity Putting the Stress on Mitochondria.
  9. Current Drug Metabolism (v.12, #3).
  10. Surgeons discover new ligament in human knee.
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