Fluoroquinolone Toxicity Syndrome

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.

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This post was published previously on Hormones Matter in 2013.

Becoming the Person I Hoped I Was

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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.

 

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This post was originally published in December of 2013. 

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.

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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 article was published previously in October 2013.  

 

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.

How I Lost my Faith in Scientists

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On December 21, 2013, The Huffington Post published an article entitled “Americans Have Little Faith in Scientists, Science Journalists: Poll.”  The article noted that, according to a HuffPost/YouGov poll, “only 36 percent of Americans reported having ‘a lot’ of trust that information they get from scientists is accurate and reliable. Fifty-one percent said they trust that information only a little, and another 6 percent said they don’t trust it at all.”

People trust science journalists even less, with only “12 percent of respondents said (saying) that they had a lot of trust in journalists to get the facts right in their stories about scientific studies.”

I was raised by an engineer with a science background.  I don’t have any religious beliefs that keep me from believing what scientists say about human or earth history.  My political and ideological beliefs don’t conflict with those of scientists, generally.  I believe that science is the best method of seeking the truth that humans have found thus far.  I believe in the efficacy of the scientific method.

But I am one of the people in the 51 percent who only trust the information provided by scientists “a little” and one of the 88 percent who doesn’t trust science journalists to get the facts right. I haven’t fully lost my faith that scientists will eventually get to the right answers, but I have lost my trust that they are on the right path. Here are a few reasons why:

  1. I know more about my mysterious condition than they do.  I had an adverse reaction to Cipro, a fluoroquinolone antibiotic, and that triggered Fluoroquinolone Toxicity Syndrome – a syndrome that is more similar to an autoimmune disease than an allergic reaction to a drug.  There are hundreds of reputable, peer-reviewed journal articles about the effects of fluoroquinolones on human cells.  I am thankful for those articles (and the scientists that did the research and wrote the articles), as they have given me much of the information that I have.  But there is no consensus among research scientists about how fluoroquinolones affect humans, or even human cells.  Fluoroquinolones are chemical creations of humans.  Their effects on human cells should be testable, verifiable and known (they have been on the market for more than 30 years), but they’re not. The effects of fluoroquinolones on human cells are complex and multifaceted. But there are causes and effects and truths to be found, yet victims of these drugs are left to do the research about how these drugs work and put together the pieces as to why they are ill, because the experts, the scientists and researchers, aren’t. This isn’t okay.
  2. Rise in chronic mysterious illness.  People are sick with “diseases of modernity.”  Doctors and scientists don’t seem to have any answers as to what diseases like fibromyalgia, chronic fatigue syndrome, adverse reactions to drugs (including vaccines), autoimmune diseases, allergies, and others are caused by, or how to fix them. When you, or a family member, become ill, and there is nothing that your doctor can do to help you, yet your pain and suffering are definitely real; the natural and reasonable tendency is to lose trust in those who are failing to give you answers. We expect answers to medical, biological, and chemical problems from doctors and scientists, and when they fail to give us those answers, we lose faith in them.
  3. Publication bias.  Publication bias is “the practice of selectively publishing (drug) trial results that serve an agenda.” It’s an ethically disgusting practice and most scientists agree that it should be eliminated, somehow. Yet it continues. The Huffington Post article noted that many people distrusted scientists and science journalists because they believed that the scientist’s findings were influenced by political ideology or the influence of the companies sponsoring them. No system has yet been put into place to minimize or eliminate bias.
  4. Scientists aren’t seeing the big picture.  There is a struggle between specialization and detail, and the so-called “big picture.”  Journal articles will point out details of a problem, then fail to link those details to the big picture.  For example, there are journal articles that note that fluoroquinolones deplete mitochondrial DNA.  What that means for human health and how that affects the person who takes those drugs, is not noted.
  5. Scientists aren’t taking a stand.  There are journal articles about the disastrous effects of some drugs on human health, but there seems to be little screaming about the limiting of the use of those drugs based on the findings. Rather, the warning label is simply updated, and people continue to be hurt, when their pain, suffering and death could have been prevented.
  6. Nonsense explanations.  In an article in The Atlantic entitled “Living Sick and Dying Young in Rich America” about how an increasing number of young people are coming down with chronic illnesses, especially autoimmune diseases, the explanations put forth by the doctors and scientists interviewed as to why young people are sick with autoimmune diseases bordered on ridiculous.  Junk food and a lack of exercise were asserted to be the main culprits. Junk food and lack of exercise will certainly make a person fat and they may cause some chronic illnesses like obesity and diabetes, but they aren’t likely to trigger an over-expression or over-stimulation of immune system cells (unless the junk food is made from GMOs and immune-system altering chemicals, in which case it’s possible), which is what causes autoimmune diseases. Perhaps pharmaceuticals that have been shown to stimulate immune system cells should be looked at as a culprit, instead of the victim’s diet and exercise habits.
  7. Faith-based assertions.  Almost every journal article I read about the safety of the drugs that hurt me, fluorouquinolones, has a faith-based, incorrect statement that they are “generally regarded as safe.”  Many of the articles then go on to note deleterious effects of fluoroquinolones on human cells, but those truthful findings don’t seem to inspire revision of the presumptive statement that they are “safe.”
  8. Faith-based following.  To be accused of being anti-science is a huge insult.  If you question the safety of a drug or vaccine you risk being accused of being anti-science, and the assumption is that you must be irrational, dangerous, or opposed to the progress that has been made with other pharmaceuticals or vaccines.  The demonizing of those who question scientists is, ironically, anti-science, as science is built on questioning assumptions and faith-based beliefs.
  9. Conflicting results.  When questions are asked that should have a yes or no answer, and those questions can be verified in a laboratory setting, different groups of scientists should be able to get consistent results.  Replicability is a tenet of science. Yet there are conflicting results to many important, answerable questions throughout scientific journals.  It’s frustrating and it decreases the credibility of scientists that questions that should be answerable aren’t being answered.
  10. Changing stories.  Is butter good for us or bad for us?  How about coffee?  How about fluoride?  What about statins?  The story changes constantly. This destroys the credibility of the people telling the story – doctors, scientists, nutritionists, and others.
  11. Disbelief of patient reports.  If one patient comes forward asserting that a pharmaceutical or vaccine hurt him in an unusual way, it is reasonable to think that the patient might be mistaken, that there might be another explanation for his pain.  However, if hundreds or thousands of patients come forward with the same, or similar stories, their assertions should be listened to. Unfortunately, their stories are being systematically disregarded and denied by doctors and scientists alike. Hurt patients have no reason to lie, they have no conflicts of interest (generally), so they should be listened to and believed. In systematically ignoring them and their pain, doctors and scientists are being callous and un-curious, and they are losing credibility.
  12. Not asking the right questions.  Mitochondrial dysfunction is related to many diseases including, “schizophrenia, bipolar disease, dementia, Alzheimer’s disease, epilepsy, migraine headaches, strokes, neuropathic pain, Parkinson’s disease, ataxia, transient ischemic attack, cardiomyopathy, coronary artery disease, chronic fatigue syndrome, fibromyalgia, retinitis pigmentosa, diabetes, hepatitis C, and primary biliary cirrhosis” (source) and others.  Many pharmaceuticals, including statin drugs, synthetic antibiotics, antidepressants and others, adversely affect mitochondria.  Yet the affects of drugs on mitochondria are not systematically examined before drugs are put onto the market.  If mitochondria are not being looked at, the right questions are not being asked, and if they’re not asked, they won’t be answered.  We count on scientists to ask the right questions.  When they don’t, they lose credibility.

The list above saddens me.  If I can’t trust scientists to give me answers, who can I trust?  Is there an alternative?  I’m not the type to start an alternate belief system, and I truly do believe that the scientific method is the best way of finding truth that we have.  But scientists are failing to find the answers as to why, for example, an increasing number of young people are suffering from chronic autoimmune ailments than at earlier times, or appalling autism rates keep getting worse and worse, and people are suffering because of the lack of answers provided.  So I have lost trust in them.  Sadly, I have more trust in personal reports (which are, of course, anecdotal) that I read on the internet than I do in scientific studies.  At least I know that the people screaming about their pain, their struggles, their need for answers, etc. aren’t subject to publication bias with their screams.

The only way to find answers to chemical, biological and medical problems is through science.  Scientists must be the ones to step up to do the science. They must be the people to find the answers.  Substantive, reliable, replicable, truthful information cannot be gained without them and their methods.  We are at their mercy in finding answers to many of life’s problems, especially those having to do with human health.  I trust that some brave scientists will step up to rectify some of the criticisms that I listed above.  I certainly hope so.

I don’t expect scientists to be perfect.  I don’t expect them to have all the answers.  I don’t expect them to be infallible.  But I do expect them to be curious, humble, truth-seekers who minimize bias and conflicts of interest to the best of their abilities. I expect them to be ethical and moral. I expect them to take responsibility for the bad that comes along with the good of their creations. I expect them to be prudent and careful when dealing with chemicals that can mess things (human bodies and the environment) up in ways that can’t be fixed.  I expect them to be honest.  I expect them to be outraged.  I expect them to be curious.  I expect them to seek answers to the real problems and dilemmas that people face.  Perhaps I’m naïve.  Perhaps I’m expecting too much from my fellow humans who happen to have the title of Scientist.  Perhaps I’m not being fair.  I apologize if that is the case.  We are all just people trying to do the best we can to make the world a better place.  I just wish that I was still sure that, collectively, scientists were making progress toward making the world a better, not worse, place.  Until I gain some reassurance, consider me one of the doubtful and untrusting.  I am truly, deeply saddened by this.

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.

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