fluoroquinolone reactions

Adverse Drug Reactions Are Like Earthquakes

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adverse drug reactions are like earthquakes

I often compare adverse drug reactions to earthquakes. People die in earthquakes. More people die from taking pharmaceuticals. Per Ethicist, Dr. Donald W. Light, “Every week, about 53,000 excess hospitalizations and about 2,400 excess deaths occur in the United States among people taking properly prescribed drugs to be healthier. One in every five drugs approved ends up causing serious harm, while one in ten provide substantial benefit compared to existing, established drugs.”

Earthquakes destroy lives, homes, towns, bridges, cities, etc. Likewise, pharmaceuticals can destroy muscles and nerves, induce peripheral neuropathy and mental illness, lead to a variety of multi-symptom chronic diseases, etc.

Earthquakes happen suddenly and without warning. Systemic illness brought on by pharmaceuticals often also happens suddenly and without warning. A myriad of symptoms can afflict a victim of pharmaceuticals in a matter of weeks or months – essentially simultaneously. It is as if every cell in the body of the victim has been shaken and damaged – leaving chronic illness and pain where health, wellness and vitality once stood.

There is ongoing damage after an earthquake. Aftershocks occur. For those suffering from chronic illness brought on by a pharmaceutical, relapses can occur. A new insult to the system, even one that would be benign to someone who was not already knocked down, can throw a person suffering from an adverse drug reaction into a tailspin of pain and suffering.

There is collateral damage after an earthquake when deaths occur not from the shaking of the earth itself, but from the damage done by the earthquake. When a person is hit by a pharmaceutical induced illness, there is also collateral damage. Not only does the health of the victim suffer, but other areas of life do too. Their relationships are burdened. Jobs are often lost. Homes are often lost. Money is lost.

Infrastructure is damaged when an earthquake hits a city. Systemic, chronic pharmaceutical induced illnesses (as opposed to allergic reactions or transient, easy to treat “side-effects”) damage multiple systems of infrastructure within a victim’s body. Systems upon which all aspects of health are built – the microbiome, the endocrine system, mitochondria, cellular homeostasis, etc. – are shaken and damaged by pharmaceuticals.

Earthquakes are terrifying to live through. So are adverse drug reactions.

Earthquakes vary in intensity. So do adverse drug reactions.

Some cities recover from the earthquake that knocked them down. Others are so devastated, so destroyed, that they will, sadly, never recover. The same is true for victims of adverse drug reactions.

The metaphor is apt but it is not complete (no metaphors ever are). There is one huge way that adverse drug reactions are nothing like earthquakes.

Earthquakes are natural disasters. Adverse reactions to pharmaceuticals are man-made disasters.

No one is held responsible for the earthquake, because no one caused the earthquake. It is a natural event and we are all at nature’s mercy. Pharmaceutical induced illnesses are not something that happens in nature or something that happens because of fate; they are something that occurs because of the negligence of companies and the humans that operate those companies. The makers of pharmaceuticals should be held responsible for the damage that their products do. There should be justice for the victims of pharmaceuticals.

If you’re hurt by a drug, you can sue, right? After all, the United States is the most litigious country in the world. People sue for all sorts of things all the time, surely those who are legitimately hurt by pharmaceuticals have legal recourse, right? And the legal system must be keeping pharmaceutical companies from hurting people, right?

Unfortunately for both the victims of pharmaceuticals, justice for victims is rare. Victims are unable to gain justice for multiple reasons, one of which being – if the “side-effect” of a drug that you suffer from is listed on the warning label for the drug, you can’t sue the drug companies for failure to warn. For example, if you suffer from repeated tendon ruptures that lead to pain and disability after taking Avelox/moxifloxacin, a fluoroquinolone antibiotic, you can’t sue the manufacturer (Bayer) because the warning label states that Avelox and other fluoroquinolones “are associated with an increased risk of tendinitis and tendon rupture in all ages.” Never mind that the warning label says nowhere that the structure of every tendon in your body can be altered permanently by the drug – lawyers won’t take the case because patients were “warned” by the label.

The Supreme Court did victims of pharmaceuticals no favor when they ruled on June 24, 2013, that generic drug manufacturers could not be held liable for the effects of the pharmaceuticals that they manufacture. A New York Times piece pointed out that, “The decision is a significant victory for the generic drug industry, but further narrows the recourse for people who are injured by such drugs.” People who have been hurt by a drug manufactured by a generic drug company have no recourse now – no chance for justice – regardless of how horribly they are harmed by a drug. Lawyers aren’t even looking at cases for people hurt by generic drugs.

Justice isn’t easy to come by. It rarely happens for victims of pharmaceuticals.

Pharmaceutical induced illnesses are just like earthquakes. No one is held responsible for the damage done. There is no justice for the victims. They are left to pick up the rubble of their lives on their own.

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.

We Need Your Help

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

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Write for Us

Have you experienced the adverse drug reaction earthquake? Share your experience. Help spread awareness. Contact us.

This article was originally published on June 23,  2014.

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Fluoroquinolone Antibiotics and Systemic Fungal Infections – A Real Problem

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post fluoroquinolone -Glabrata

Assignment – write about how fluoroquinolone (Cipro/Ciprofloxacin, Levaquin/Levofloxacin, Avelox/Moxifloxacin and Floxin/Ofloxacin) use can cause deadly systemic fungal infections.

It has been a difficult assignment for me to complete because I have read so much about the havoc that fluoroquinolones wreak on cells – they deplete mtDNA, cause chromosomal abnormalities, disrupt the balance of minerals within cells, cause oxidative stress, etc. All of these effects of fluoroquinolones cause harm to those who take them. So, it has been difficult for me to shift modes, from thinking that the damage mechanism for fluoroquinolones is cellular damage, to noting that damage can be done by systemic fungal infections that take root after the fluoroquinolones have killed all of the good bacteria in the gut. It’s not an either/or situation though. Fluoroquinolones can cause cellular damage AND they can kill all of the good bacteria in the gut, leaving the person who takes the fluoroquinolone susceptible to systemic fungal infections. Fungal infections are one of the many chronically harmful effects of fluoroquinolone antibiotics.

All broad-spectrum antibiotics can cause fungal infections. The “use of antimicrobials is the main reason for the loss of the normal flora and its replacement by potentially pathogenic microorganisms, such as gram-negative aerobic bacilli and Candida species.” This is another reason that I am struggling with this post.  I have written multiple posts going over how fluoroquinolones are categorically different from all the other antibiotics. (They are more similar to chemotherapy drugs than they are to penicillin.) None of the other classes of antibiotics cause a chronic syndrome that includes destruction of all connective tissue throughout the body – including tendons, muscles, cartilage, etc. None of the other classes of antibiotics damage all the nervous systems – including the central, peripheral and autonomic nervous systems. Fluoroquinolones do.

Again, it’s not an either/or situation though. It is possible that some of the symptoms of fluoroquinolone toxicity stem from systemic fungal infections, while others stem from cellular damage. Symptoms like fatigue, brain-fog, food intolerances, etc. that occur both with fluoroquinolone toxicity and candida-related complex may be the result of fungal infections in those who are suffering from fluoroquinolone toxicity or they may be a result of mitochondrial damage, or both. Fluoroquinolone toxicity and candida-related complex are not mutually exclusive diseases. In fact, there may be a huge amount of overlap between the two. It was noted in an article entitled Levofloxacin and Moxifloxacin Increase Human Gut Colonization by Candida Species that fluoroquinolones, “significantly increase the concentration of Candida species in the human gut.  Hence, these agents should be used with caution in patients at risk for systemic fungal infections.” Patients at risk for systemic fungal infections include those who are immunocompromised, on corticosteroid drugs and other risk factors. In addition to causing cellular damage, fluoroquinolones also open the door for colonization of candida in the gut of those who take them.

Perhaps I shouldn’t downplay the severity of fungal infections. It is not “just” a fungal infection, just like an adverse reaction to a fluoroquinolone is not “just” a side-effect – both are chronic syndromes. They are not a light matter. If a systemic fungal infection takes hold, it can be deadly – and often is.  Debra Anderson noted in her post “Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard Of” that 67-90% of diagnosed blood borne glabrata cases are fatal. Debra’s glabrata infection was brought on by a combination of steroids and fluoroquinolone antibiotics. The steroids weakened her immune system, the fluoroquinolones killed all of the good bacteria in her gut that were keeping the candida at bay, and the glabrata (a kind of candida) took over. She is fighting a tough battle. It’s a battle for her life and it is nothing to trivialize. Debra is one of two “floxie” friends of mine who are battling glabrata. The other friend has recently received a diagnosis of terminal from her doctor, she has entered hospice care and she does not expect to last much longer.

Systemic candida has been trivialized by many though – “Conventional medical practitioners do not recognize candida-related complex as a disease.” Candida causes symptoms like  chronic congestion, sugar cravings, food intolerances, difficulty thinking / brain fog, skin rashes, reoccurring yeast and urinary tract infections, etc. There is a tendency to dismiss these symptoms as insignificant because they are difficult to measure and quantify, they are based on patient reports, and it is easy to think of them as things that everyone experiences. Who doesn’t have sugar cravings and brain fog? The fact that popular diets abound diminishing candida exist, and thus self-diagnosis is common, don’t help to encourage traditional medical practitioners to recognize the symptoms of candida-related complex. However, there are thousands of peer-reviewed journal articles noting the very real problems of candida infections. Systemic, chronic candida infections are real – and serious.

Systemic fungal infections are also serious because they are difficult to treat.  Fungi adapt quickly to anti-fungal drugs, and develop resistance to them. Candida form biofilms. Biofilms “consist of matrix-enclosed microcolonies of yeasts and hyphae, arranged in a bilayer structure. The biofilms are resistant to a range of antifungal agents currently in clinical use, including amphotericin B and fluconazole, and there appear to be multiple resistance mechanisms.”* Additionally, antifungal drugs can be dangerous in themselves. Many antifungal drugs cause kidney and liver failure, which can lead to death.

Per the article Antifungal Resistance and New Strategies to Control Fungal Infections, “At the beginning of the 20th century, bacterial epidemics were a global and important cause of mortality. In contrast, fungal infections were almost not taken into account. Since the late 1960s when antibiotic therapies were developed, a drastic rise in fungal infections was observed, and they currently represent a global health threat.” The global health threat of fungal infections is serious, and not something to trivialize. Fungal infections can be deadly, and the treatment options for getting rid of them are limited.

The causal link between antibiotics and fungal infections should be thoroughly considered by both doctors and patients before unnecessarily strong antibiotics are prescribed or administered, especially before they are prescribed in conjunction with corticosteroid drugs. It should be noted that, “use of antibiotics and immunosuppressive drugs such as corticosteroids are major factors contributing to higher frequency of fungal infections. Antibiotics and immunosuppressive drugs, by disrupting normal bacterial colonization and suppressing the immune system, create an environment within the body in which fungi can thrive.” Whether fungal infections manifest themselves in ways that are not life-threatening but do inhibit a person’s quality of life – like developing food intolerances or brain fog – or whether they become systemic and life-threatening – like bloodstream glabrata infections – they are real and should be taken seriously.

Antibiotic use has consequences. The rise in fungal infections is one of the consequences of antibiotic use.  As very strong antibiotics that also damage mammalian cells, fluoroquinolones have even more consequences than other kinds of antibiotics. Sorting out which symptoms of fluoroquinolone toxicity are a result of cellular damage and which symptoms are a result of fungal infections is not something that has yet occurred or been written up in scientific literature.  Both cellular damage and fungal infections should be taken seriously though –they are not trivial and they can be deadly.

* The glabrata form of candida is particularly difficult to diagnose and treat because the fungi don’t have hyphae.  More information can be found in Debra Anderson’s article, “Without hyphae, it is very difficult to culture, biopsy or see glabrata under a microscope. Due to the fact that it cannot be easily diagnosed, it is usually is not discovered in a person until they are very sick and by then it is a race against time to save the individual.”

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. 

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.

BCarver1 at en.wikipedia, Public domain, via Wikimedia Commons

This article was published originally on February 6, 2014. 

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A Light at the End of the Tunnel: Uncovering Thiamine Deficiency

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thiamine deficiency - light at end of tunnel

Early Health Issues: Enuresis, Long Term Antibiotics and Gardasil

My name is Eva, I am 24 years old, I am from Spain and I would like to share my story. Since I was born I have been a very healthy and active girl. The only thing to note is that I have always had frequent urination and nocturnal enuresis until I was 12 years old. At age 13, I began having frequent bouts of tonsillitis and with each episode, I was given a course of antibiotics. Eventually, I was taking antibiotics every three months along with ibuprofen continuously. At 15 years old, they gave me the human papilloma vaccine (HPV) – Gardasil.

After the vaccine, I began having fructose and sorbitol malabsorption problems and because of the frequency of antibiotics, I developed abdominal pains. I had a very pale color on my face and I was a little more tired than usual. I kept getting sore throats and at age16 they removed the nasopharyngeal tonsil /adenoids. In spite of all of this, I was living a normal life and continued to excel in school, receiving honors degree in high school.

At 18 years old, I had another course of antibiotics. This time for three months because the pus plates of my throat did not go away. I was exhausted. In the end, it was determined that I had a staphylococcus aureus resistant infection that was resistant to penicillin. I had an antibiogram, and of all the chances of antibiotics to which I was sensitive, the doctor chose levofloxacin. I was given levofloxacin for treatment of 14 days.

A few days after the treatment, in September 2012, I moved to another city to start my university studies (2 careers at a time). After a month, I got another sore throat that continued for three months. They put me on intravenous antibiotic. The doctor proposed to me to have an operation on my tonsils and I accepted. Just before the operation, I became sick again, and since they could not operate on me with an infection, he prescribed a round of amoxicillin with clavulanic acid plus levofloxacin. It had been five months since I had taken the first course of levofloxacin. This was in February 2013. After the operation, a month later, my knee and jaw began to hurt on the left side of my body. The traumatologist told me he had nothing. The dentist took my wisdom tooth, did a root canal and made dental fillings on that side, but my pain continued. I finished the course and that summer was very stressful for different reasons.

At the end of the summer, I went back to take an antibiotic for a tooth infection. A week before the beginning of the course, in September 2013, I started to feel very tired, and one night, in the middle of the street, I got dizzy and lost my sight and I had to go to the floor for a while before recovering. That’s where the nightmare began. I began to have multiple symptoms: tachycardia, nervousness, dizziness, stomach pains, intolerances, etc. At the end. I had an analysis and they gave me a diagnosis: Hashimoto’s thyroiditis. They started to treat it and at 4 months, when I was “stable” (in lab numbers), my left ankle started to hurt as if they were squeezing me with a chain. It was horrible and it started to go up to the knee, to the hip and shoulder and the pain in my mouth was worse. All on the symptoms were on my left side. The doctor said I had tendinitis, without more importance.

Over the next four months, I began to weaken. I had no strength, my legs were weak, and my mental exhaustion was increasing. I went through all kinds of doctors: rheumatologists, neurologists, internal medicine, traumatologists, and at the end, they concluded that I had fibromyalgia and chronic fatigue syndrome. That’s it. That is the best they could do and they offered no help.

Taking Matters into My Own Hands: The Fluorquinolone Connection

I began to read to realize that they are catch-all diagnoses, where they put people with multiple symptoms. Eventually, I found a doctor who began to treat the intestinal microbiota, to change my diet, reduce stress, etc. This was from 2014 to 2016. While it is true that I learned to manage crises so as not to live with pain 24 hours a day, I was stuck. I was still exhausted and had neuralgia on the left side of my body. So over these last two years I have tried other doctors, I have gone to neurologists specialized in amino acid biochemistry, but nobody knows why my health has declined so much. I have tried acupuncture, antioxidant therapy, etc. At the same time, I have not stopped reading, until I came to this wonderful blog two months ago, and suddenly EUREKA! Everything makes sense. Nobody had told me until now the dangers of fluoroquinolones. It is true that there are people who notice the problems of the antibiotic while taking it and have to leave it, it started a month later, but everything fits. My symptoms include:

  • Chronic fatigue which is very debilitating. I have been at home for 5 years, barely able to go out. I cannot study, work, or anything.
  • I have neuralgia / neuropathy ONLY on the LEFT SIDE of the body (no one gives meaning to this), from the head to the left toe.
  • Muscle weakness and rigidity
  • Tendinitis
  • Intolerance to histamine
  • Polyuria, urinary frequency
  • Sleep problems, sleep is not refreshing. I have epic dreaming disorder that does not let me rest. This problem of dreaming and getting up very tired has been a problem since since I was 16.
  • Problems with noise and light; I have to sleep with plugs and mask.
  • Alterations of the nervous system; I startle easily. I have a lot of intolerance to stress.
  • Problems with basic regulation of the body
  • Dizziness every time I get up when I’m sitting or lying down.
  • Recurrent pharyngitis / sinusitis / chest pain.
  • Hashimoto’s thyroiditis
  • Mental exhaustion
  • Weight loss.
  • Intestinal problems, intolerances, dysbiosis, infection by chronic GERD.
  • Swallowing problems. (The left side of my throat is more inflamed on the inside and it is hard for me to pass the food. It gets stuck).

Surely there are more symptoms, but I forget.

At the Root of My Symptoms: Severe Thiamine Deficiency

After reading the work of Dr. Lonsdale, I measured my transketolase and the result suggests quite a deficiency of thiamine: activation TPPE 25%. So I’ll see if trying this I can improve, until now I was lost and I saw the light at the end of the tunnel.

Questions for Dr. Lonsdale: Hello doctor, first of all thank you immensely for your dedication and work, thank you for your research and your book, you are helping a lot of people. I was lost until I found Hormones Matter and read it.  The activation of TPPE is at 24.98%. As I have read, this suggests quite a deficiency of thiamine. I’m going to look for a doctor who wants to help me treat my deficiency. I’ve read that you have to be careful with paradoxical reactions. But I have several questions that I would like you to answer if it is possible:

  1. The urinary frequency since I was born could have something to do with thiamine deficiency? Would this suggest some kind of genetic problem?
  2. Is supplementation with thiamine forever or only until the transketolase of 0? What is the time of supplementation with thiamine? When would I have to repeat the analysis of transketolase to see how it evolves?
  3. Could it be that levofloxacin has done me irreparable damage and I always had thiamine problems? Or can it be something genetic? – What is the suggested treatment?
  4. I have read about 50mg Allithiamine, with large doses of magnesium and a multivitamin, but how high should Allithiamine go – 200mg, 300mg?
  5. What do I do in the face of a paradoxical reaction? Do I stop the supplementation a few days and continue again, or to endure the reaction and continue? I want to give this information to the doctor who will treat me, in addition to his book.
  6. Does it make sense to have only neuralgia on the left side of the body? It is as if I had two bodies, the joints on the right side do not hurt, nor the nerves, only on the left side. I do not have anyone in the family with a similar background. My maternal grandfather was an alcoholic but he managed to quit. My maternal grandmother, 2 aunts and my mother have hypertension. And on my father’s side, my grandmother has always been tired from a young age, with pains and thyroid problems.

Thank you very much, Eva.

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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Allergic Reactions or Iatrogenic Illness?

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Iatrogenic-illness

Allergic Reactions versus Toxicity Syndromes

When I was twenty, I had an allergic reaction to a sulfa antibiotic. I broke out in itchy hives while I was taking the sulfa, but the hives went away as soon as I stopped taking it. I had no other symptoms nor lasting effects. I don’t recall whether or not I took Benadryl to help me recover, but I imagine that it would have helped if I had. It was clear at the time that I was having an allergic reaction to the sulfa antibiotic, but if I needed it to be verified, there are tests that could verify and validate that I am allergic to sulfa drugs.

Twelve years later, I had an adverse-reaction to ciprofloxacin, a fluoroquinolone antibiotic. For more than a year after I took the ciprofloxacin, I experienced muscle weakness and pain; autonomic nervous system dysfunction including loss of balance, inability to sweat, digestive dysmotility, dry mouth, and dry eyes; central nervous system dysfunction including memory loss, inability to concentrate, loss of reading comprehension, anxiety, and brain fog; a loss of energy (I went from doing crossfit to barely being able to walk through a shopping center); and changes in my personality. My symptoms ebbed and flowed, with some lasting for years. All my symptoms arose after I stopped taking the ciprofloxacin, and many increased in intensity long after the ciprofloxacin “should” have been out of my system. Neither Benadryl nor any other pharmaceutical I tried did anything to alleviate my symptoms. There are no tests that verify adverse reactions to fluoroquinolones, and no doctors seemed to have any clue how to treat my symptoms.

Do you see the difference in my two experiences? You should. One was a couple of hives and an itchy weekend, the other was a life-altering experience that changed my physical abilities, my thoughts, and even my way of interacting in the world.

My reaction to the sulfa antibiotic was an allergic reaction. My reaction to the ciprofloxacin was something different, and to categorize it as an “allergy” is a mistake. I am allergic to sulfa drugs. My reaction to fluoroquinolones (cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin, floxin/ofloxacin) was worse, and another exposure to a fluoroquinolone will likely lead to my permanent disability or death.

Fluoroquinolone adverse-reactions are categorically different from allergic reactions, rather, fluoroquinolone toxicity is a syndrome of multi-symptom, chronic illness that does not go away when administration of the drug has stopped. Fluoroquinolone adverse-reactions are similar in symptoms and scope to autoimmune diseases, fibromyalgia, ME/CFS, POTS, psychiatric illnesses, neurodegenerative diseases (like ALS and Parkinson’s), and other chronic, multi-symptom, illnesses that involve multiple bodily symptoms. Like many of those diseases, fluoroquinolones adversely affect gut health, mitochondrial health, liver health, neurotransmitter balance, mineral homeostasis, hormones, and more. Fluoroquinolone toxicity is a multi-symptom, chronic, syndrome, that, for many, is incurable. You can’t take a Benadryl to get rid of it. Some people recover (just like some people recover from autoimmune diseases), but there is no single path to recovery. 

Medically Induced Chronic Illness

Few people recognize that pharmaceuticals can cause multi-symptom, chronic illness SYNDROMES. They should though, because not only are millions of prescriptions for fluoroquinolones written each year (while rates of multi-symptom, chronic, mysterious illnesses go up, not entirely coincidentally), but fluoroquinolones are not the only drugs that cause multi-symptom, chronic, syndromes.

Benzodiazepine Withdrawal Syndrome

Benzodiazepines, and withdrawal from benzodiazepines, cause long-term illness that adversely affects the brain, and all aspects of the body. According to the Wikipedia entry for Benzodiazepine Withdrawal Syndrome,

“Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis,[1] and suicide[2].”

There are many sources for additional information about the multi-symptom, chronic, illness of benzodiazepine withdrawal syndrome throughout the internet.

Post Finasteride Syndrome (PFS)

Finasteride/Propecia can cause a constellation of symptoms known as post finasteride syndrome (PFS). The Post-Finasteride Syndrome Foundation describes PFS as, “Often life-altering, PFS is characterized by devastating sexual, neurological, and physical side effects that persist in men who have taken the 5-alpha reductase type II enzyme inhibitor finasteride.” Men suffering from PFS experience symptoms long after administration of the drug has stopped. It’s not an allergy, it’s a syndrome. 

Lupron Syndrome

After taking Lupron, many women reported experiencing the following effects: loss of libido, muscle and joint pain, gastrointestinal disturbances, bone loss, hair loss, dry and cracked skin, blood-sugar abnormalities, cardiovascular and respiratory problems, brain and nervous system problems, etc. Lupron use led to a multi-symptom, chronic illness–a syndrome. 

Essure Syndrome

There is a Facebook group with more than 31,000 members for victims of Essure, a coil that is implanted into fallopian tubes to serve as permanent birth control. Many of the women who are victims of Essure have multiple, autoimmune-disease-like symptoms. For many of them, the Essure causes a syndrome of chronic illness and pain.

Singular Syndrome

Montelukast/Singulair, the asthma medication, has been linked with Churg Strauss Syndrome, an autoimmune condition that leads to inflammation of the blood vessels in the lungs. Churg Strauss Syndrome is a serious, incurable, autoimmune disease. It’s not an “allergy” to Singulair, it’s worse–it’s the triggering of a serious disease.

Other Medication Induced Syndromes

Lariam/mefloquine can cause ongoing, severe psychiatric problems. SSRIs, hormonal birth control, statins, and other drugs, can also cause multi-symptom illnesses. In addition to fluoroquinolones, other antibiotics can cause long-lasting syndromes. There are cases of thousands of young men and women who are suffering from the severe adverse-effects of the HPV vaccine. Even over-the-counter drugs can have long-term, multi-faceted “side-effects.”

Iatrogenic Illness Is Neither Rare nor Allergic

These iatrogenic illnesses are not rare, and it should not be a foreign notion that pharmaceuticals can cause chronic illnesses–there are thousands of patient reports noting that various pharmaceuticals have led to complex and long-lasting illnesses, and many chronic illness symptoms are listed on drug warning labels. Yet, I still receive messages like this one:

“I saw the head allergist at the hospital and still here. He said no such thing as being allergic to Levaquin. No test to prove it.”

By that doctor’s reasoning, the only adverse drug reactions that exist are the immediate allergic reactions that can be tested for and cured with antihistamines or epinephrine. Unfortunately, that simply isn’t true. There are many adverse drug reactions that look more like multi-symptom, chronic, mysterious, incurable illnesses than allergic reactions. It’s time for a paradigm shift among patients and medical providers alike to recognize not only that many pharmaceuticals can cause syndromes of illness, and that many of the recognized multi-symptom, chronic illnesses can be linked to (caused by) pharmaceutical use.

Patients who are suffering from pharmaceutical caused syndromes deserve recognition. The people who have recognized illnesses that can be linked to pharmaceutical use deserve to know that those links exist. Just because a reaction doesn’t fit into the “allergy” model, that doesn’t mean that it doesn’t exist. Pharmaceutical-caused syndromes exist, and they are just as devastating, and often worse, than recognized allergic reactions.

We Need Your Help

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

Yes, I would like to support Hormones Matter. 

This article was published originally on November 22, 2016.

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Victory at the FDA for Fluoroquinolone Victims

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FDA Meeting Fluoroquinolones

In the four years since I was hurt by ciprofloxacin, a fluoroquinolone antibiotic, I have often fantasized about what I would say to the FDA if I had chance. Would I tell them about the pain and suffering I experienced after taking ciprofloxacin? Would I tell them stories about my friends who have had their lives wrecked by fluoroquinolone toxicity? Would I share with them the knowledge that I have gained from obsessively researching fluoroquinolone toxicity? Would I berate them and yell, “Do your ^%^& job?” Would I beg them to, at the very least, keep these dangerous drugs away from children?

On November 5, 2015, I had the opportunity to testify before the FDA’s Antimicrobial Drugs Advisory Committee in a meeting specifically to address the risks of fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin, and their generic equivalents). I, along with thirty-five other people, testified, and I chose to note the damage that ciprofloxacin did to me and to point out some of the mechanisms through which fluoroquinolones hurt people. Others gave poignant and heart-breaking testimonies about the loss of their health, or the loss of their loved ones, and a few doctors and consumer advocates testified as well. You can read some of the presentations that were provided to the FDA committee in THIS POST.

I am happy to report that the meeting resulted in an overwhelming victory for victims of fluoroquinolone antibiotics. The committee ruled that the current warning labels do NOT appropriately address the risks associated with fluoroquinolones for treatment of sinusitis, bronchitis in those with COPD, or uncomplicated urinary tract infections.

This is a HUGE step in the right direction, and it is my sincere hope that it will result in the FDA dramatically cutting the number of unnecessary fluoroquinolone prescriptions, and better treatment for those who are suffering from adverse reactions to fluoroquinolones.

Acknowledgement of Disability Caused by Fluoroquinolones

Additionally, in the meeting brief, the FDA identified a syndrome associated with fluoroquinolone toxicity—one that “floxies” have been pushing for recognition of for years. It is called Fluoroquinolone Associated Disability (FQAD). According to the FDA:

“While most of the individual AEs (adverse events) that exist within FQAD (fluoroquinolone associated disability) are currently described in fluoroquinolone labeling, the particular constellation of symptoms across organ systems is not. Individuals with FQAD were defined as U.S. patients who were reported to be previously healthy and prescribed an oral fluoroquinolone antibacterial drug for the treatment of uncomplicated sinusitis, bronchitis, or urinary tract infection (UTI). To qualify, individuals had to have AEs reported in two or more of the following body systems: peripheral nervous system, neuropsychiatric, musculoskeletal, senses, cardiovascular and skin. These body systems were chosen as they had been observed to be frequently involved with the fluoroquinolone reports describing disability. In addition, the AEs had to have been reported to last 30 days or longer after stopping the fluoroquinolone, and had to have a reported outcome of disability.”

That acknowledgement from a FDA committee, that fluoroquinolones cause a disabling constellation of symptoms in previously healthy individuals, is a HUGE victory for victims of fluoroquinolones.

Next Steps in the Fluoroquinolone Toxicity Battle

Next, the committee will make recommendations to the FDA. Presumably they will recommend that the FDA update the warning labels to note that the constellation of symptoms associated with FQAD, so as to educate physicians and patients of the risks of this class of antibiotics.

The FDA may enact other means of more properly addressing the risks associated with fluoroquinolone use, such as enrolling fluoroquinolones in the Risk Evaluation and Mitigation Strategies (REMS) program.

Several FDA committee members mentioned the need for further studies of fluoroquinolones, and hopefully some long-term and intergenerational studies will be conducted.

I hope that the FDA does all of these things, and that fluoroquinolone use is curtailed significantly. More than 23 million prescriptions for fluoroquinolones were dispensed in the U.S. in 2011 alone, and as many as 90% of those prescriptions were inappropriate given the true risk profile of fluoroquinolones.

We shall see if the FDA does anything with the information that was presented to the committee, and what they do with the committee’s recommendations.

Thoughts on Advocacy Efforts Directed at the FDA

Other groups of patient advocates who are interested in replicating the success of “floxies” in getting a favorable ruling from a FDA committee may be wondering what caused the FDA to look at fluoroquinolones. I believe that the FDA’s decision to hold the committee meeting was a culmination of several factors.

First, people have been reporting disabling reactions to fluoroquinolones to the FDA using their adverse event reporting system (FAERS). I encourage everyone who has experienced an adverse reaction to a drug or medical device to file a report with FAERS.

Second, more than 150 news stories about the dangers of fluoroquinolones have aired in the last two years. You can view them through THIS LINK. The news stories were prompted by the persistence of victims of fluoroquinolones reaching out to their local news stations.

Third, two citizens’ petitions have been filed with the FDA. One notes that serious psychiatric adverse effects can be the result of fluoroquinolone use. Another petition notes that mitochondrial toxicity should be added to the warning labels for fluoroquinolones.

Fourth, concerned citizens met with the FDA to discuss the dangers of this class of drugs.

Basically, people have been screaming at the FDA through multiple venues demanding that they hear us. At the committee meeting, they heard us.

I encourage everyone who has been hurt by a drug or medical device to report their story to the FDA, to tell their story loudly and persistently through the media, and to organize social media groups so that your message is spread far and wide, and heard loud and clear.

“Floxies” have come a long way in getting the dangers of fluoroquinolones recognized by the FDA, but we still have a long way to go. As nice as acknowledgement and being heard are, action is needed to get what we really want—change in how fluoroquinolones are viewed and prescribed. We are moving in the right direction. One step at a time, and we will reach our goals of prudent and appropriate use of fluoroquinolones, as well as healing for those adversely affected by these drugs.

Information about Fluoroquinolone Toxicity

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

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Warning to Floxies: Beware of New Med for Psoriatic Arthritis

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Debra Anderson

My husband suffered from a mild adverse reaction to fluoroquinolone antibiotics three years ago. He went on to develop psoriatic arthritis from his floxing approximately one year later. Psoriatic arthritis is a painful skin and joint inflammatory condition. He avoided taking any medications for this condition until just recently.

This past week he saw our rheumatologist who prescribed a brand new drug that has just come out on the market to treat psoriatic arthritis. The drug is called Otezla. The doctor told him that this medication was different than all of the other medications used to treat psoriatic arthritis because it does not suppress the immune system. He told him that the only known side effects that were seen in trials were diarrhea (which is supposed to get better the longer you use it), headaches, indigestion, nausea, vomiting, stomach pain, sinus problems and severe depression. The depression is so severe though and include suicidal ideation.

The doctor suggested that the Otezla, for the most part seemed harmless, and its side effects seemed nothing compared to all the other toxic drugs out there to treat this condition. So, my husband said he would give it a try and started the drug, three days ago.

Individuals prescribed this drug begin at a lower dose, 10 mg and titrate up to near a 100mgs within about month. Currently, because Otezla is so new, patients can only get the drug from their doctors. Physicians are being given one month trials of the medications from the pharmaceutical company to offer to their patients. If it works, the patient then orders directly from the manufacturer. Pharmacies are not distributing it yet.

My husband looked at the drug literature that came in the packet but it really did not give much information since it is just now being distributed out to the general market. The only thing that the literature can report is what was seen in the study trials and for the most part it just confirmed what the doctor had told us in clinic. The technical information was listed. The mechanisms of how the drug worked, how it is excreted and metabolized was in there but my husband did not understand much of it. Like a fool, I did not take the time to read it because I am dealing with my own health issues now.

The first day my husband used the Otezla, he had no problems, no side effects. We thought great, this is going to work without all the risks of the other drugs.

The second day he had to take two pills, one in the morning and one at night and again. Again, he did just fine.

The third day he woke up feeling very tired and began aching more than normal. Nevertheless, he decided to continue taking the drug. He took one pill in the morning and by that night he was really hurting all over; to the point that he was having a hard time walking and moving. Like a fool, he said he wanted to give it one more day and so he took the next pill.

That next morning, the fourth day, he could barely get up and was having severe pain in most of his tendons. He did stop taking the drug, but it was already too late. By that evening he could no longer move his right wrist without severe pain; pain that brought him to his knees. He also noticed his blood pressure was steadily climbing and his heart rate was abnormally high even at rest. The diarrhea then began with the stomach pain and now all his muscles were painful to touch. He was in bad shape.

He got on the internet and began searching for patient reports of side effects for Otezla. Lo and behold, there are already sites focused on Otezla side effects, though they are difficult to find (here, here) with all the marketing hype around this drug. Page after page on the search shows nothing but positive PR and how wonderful this drug is. He found reports tendon tears, all over muscle pain and nerve pain along with a host of what sounds very similar to post fluoroquinolone reactions – floxing symptoms. He also found a study on this drug that talked about this drug being shown to cause Achilles tendon ruptures and tears as a possible problem that should be listed in the literature but has not yet been put in there*. So, I said get me the drug literature paper so I can read it!

OMG! This drug is almost identical to the fluoroquinolones. Its active ingredient is Apremilast, not neldaxic acid. Both drugs use similar pathways. It has warnings not to be mixed with steroids, NSAIDs, Rifaximan and Phenobarbitol. Great, my husband was taking NSAIDs along with Otezla.

The paper then goes on to explain that this drug does not suppress the immune system like the other ones on the market, though it suppresses an immune activator called PDE4 (phosphodiesterase). However, many of the documents I read state that they do not know exactly how or why it works in half of all people or even how use it to treat psoriatic arthritis; meaning they really do not know what this drug is truly doing at the cellular level to the people taking it. DAMN IT!!!!!

Worse yet, in many using Otezla, it may cross the blood brain barrier and causing depression, psychosis and even suicidal thoughts and tendencies (sound familiar, Levaquin!) This drug literature was very similar to the early warnings for fluoroquinolones.

This new chemical, which is the active ingredient in this drug known as Apremilast was based on the thalidomide molecule, but it supposed to work differently. They are marketing it for autoimmune disease and if it goes over well they will expand on it to try and come up with better treatments for other autoimmune diseases like RA, Lupus, Crohns, etc…

Needless to say, my husband has stopped the drug but is now floxed even further. He did go to the ER because his wrist was so bad. In the ER, they determined that he has a swollen and possibly torn ulnar nerve that is damaged just before the wrist. His Achilles tendon is now flaring today as well and he has been put in braces for both wrists and ankles. He is in terrible pain and on Oxicodone for the pain because he has been told not to take any NSAIDs from here on out due to after effects of Otezla.

Our lives where shattered when my husband, my daughter and myself took Cipro for a stomach infection three years ago; a stomach infection that turned out to be nothing more than a virus. I was hit the hardest. My daughter had a moderate adverse reaction and my husband only mildly. My daughter and I have gone on to develop spondyloarapthy with Crohn’s and many other fluoroquinolone related problems. My husband went on to develop psoriatic arthritis but, for the most part, he could function with little problem. Now three years later and another drug, similar to the fluoroquinolones, has once again hit our family and shattered what was left of it. My husband is now very bad and we do not know if or when he will recover. This is very scary. I wrote this story to warn other floxies, individuals suffering from post fluoroquinolone reactions, not to take this drug.

*At the time of publication, Hormones Matter does not have access to that study.

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Fluoroquinolone Neuropathy Feels Like Acid Burning and Electrocution

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Janet Murray after fluoroquinolone antibiotic toxicity

My name is Janet Murray, I am 57 years old. I do not even know how to put my health story into words so that the human mind can understand the pain I have lived with. I lived in Canada and had been given many courses of Cipro for various illnesses over the last 30 years. Sometime ago, I began developing a lot of strange problems that no one could diagnose. I had GI difficulties, body pain, migraines every week, severe interstitial cystitis – so severe they wanted to remove my bladder. Thankfully, they did not. I was given many diagnoses too, including Chronic Fatigue Syndrome (CFS) and fibromyalgia. My cognitive abilities became so impaired. I loose words and my memory is shot.  I had to leave my job with the Federal Government and work at home, at my own hours. I have been extremely fatigued for the last 25 years, but I never connected the dots between my health issues and the fluoroquinolone antibiotics like Cipro, Levaquin, Avelox and others until I blew out my forearm tendon, a classic post fluoroquinolone adverse reaction. It was only then that I began to learn more about the chronic symptoms that fluoroquinolone antibiotics evoke. I had them all and more.  These symptoms didn’t appear all at once, and so it was difficult to identify at first, but over time, my illnesses became readily apparent and progressive to the point that it was no longer a question of if I was poisoned by a fluoroquinolone, but how badly.

Let me back up a little though and give you some more details. For years, I was fatigued and suffering from post fluoroquinolone reactions, but I didn’t know it. During that time, I had a long distance relationship with the love of my life in NJ.  He waited and visited me back and forth for 10 years and I visited when I was well enough. When I was finally was well enough to immigrate to the US, I he asked me to marry him and so I stayed and had two wonderful years. We are jewelry designers and did the large shows. I functioned, at very low level and had to rest always, but I was living my dream. Even functioning at such a low level, I was happy after many years of hell.

One year, I kept getting bronchial issues and went to a walk in clinic. I was given Levaquin with Prednisone with NSAIDS and was on small dose of a benzodiazepine. Fluoroquinolones should never be used with steroids and NSAIDS, something I did not know at the time and apparently neither did the doctors.  I took this combination again and again and again across that year.

Janet Murray - Before and After FQ
This is me before and after fluoroquinolone toxicity.

My reaction to these drugs was delayed and so it did not occur to me to link the Levaquin or my past Cipro use to my strange symptoms. I have since learned that delayed adverse reactions are common post fluoroquinolones. After my first script that year I was more tired, could not walk far and something was not right. I didn’t know what though. During the second year I woke up with acid pain in the shoulder and could not lift it. I was told I had frozen shoulder. It was really a tendon rupture, common post fluoroquinolone.

The pain in my forearm and shoulder was horrific. It took 8 months before I could move my arm again. Then I woke up one morning and the same thing was happening on my buttock tendons. I had the same horrific, acid-like pain. Those tendons ruptured. I crawled for 4 months and tried to stand when I could. I could no longer walk, the pain was unbearable.

One morning I woke up and my entire body felt like it was beaten with a baseball bat. I had a shot-like feeling in the base of my neck. I sat up, vomited and shook. The next day my entire body started to shake. I felt like I had been electrocuted. I had sharp pains of electricity though my entire body. My skin felt ripped off of the bones with electric jabs and jolts. I had large jolts of electricity cursing through my body. I sat for 5 months frozen, feeling like I was living in a body of large, angry hornets, stinging me all over 24 hours a day, 7 days a week. The electrocutions were never ending.

My stomach almost shut down almost. Every joint in my body popped and cracked when I moved.  My legs would not hold me. I lost the vision in my right eye due to a macular tear. I lost four teeth due severe periodontal damage. Other symptoms include:

  • Up to 40 mouth sores at a time. The doctors say they look like burns or lesions. I wonder if it’s not a form of Steven-Johnson Syndrome.
  • Swaying, if walking, dizzy, feeling of being “stoned” in the head.
  • Sensory chills so severe with stinging that it takes 4 hot water bottles and wearing then down top as well.
  • Arms and hands go dead and numb
  • Constant feelings of being electrocuted
  • Severe bowel constipation
  • Intolerance  to most foods
  • Body hair stopped growing
  • My skin has become very thin and transparent with enlarged veins.
  • Pin prick sores on my legs and what looks like burns all over my body.
    Post fluoroquinolone skin reactions
    On the right, the burn-like lesions all over my body. On the left, the pin-prick sores on my legs.
  • I experience severe changes in body temperature.
  • Feelings of terror and anxiety, not related to any surrounding, that come out of the blue
  • Severe depression
  • Hyperthyroid

And the strange symptoms go on and on. No one seemed to understand. I was almost dead. I dropped 40 pounds in three months. My heart pounds non-stop. Terrors and jolts surge through me. I was hysterical and crying.

The doctors keep saying I have fibromyalgia. FIBRO, I am being electrocuted..!! It couldn’t have fibro. I sat and thought this is NO normal illness but nothing showed up much on my tests. I have seen 50 doctors and no one can find anything.  I feel like I have been poisoned.  I soon learned, I was not alone.  It was the Levaquin, a fluoroquinolone antibiotic that I have since learned, causes severe peripheral neurophathies, mitochondrial damage, and all of the seemingly unrelated symptoms that I have experienced over the last couple of years.

Right now, I am in so much pain, I cry daily. I wake up with night terrors, heart pounding. My feet feel frozen, as if they are dying due to extreme hypothermia – the kind mountain climbers face when their fingers and toes turn black. That’s what my feet feel like. My tongue burns like a hornet’s nest, day in, day out.  It has been a year now, living with all over the body hornet stings and large tree like branch zapping about 40 at a time. I had the EMG and nerve biopsy that shows axonal swelling.  I had an MRI showing two white matter lesions in the frontal lobe, the doctors say are consistent with MS or Lyme disease.

I should mention, I also tested positive for the MTHFR mutation that makes methylating vitamin B’s difficult.  Even with the axonal damage, no one knows what to do. They tried to give me painkillers but I cannot tolerate them and vomit them back up. I have been on Paxil for years, more because I cannot seem to withdraw from it than anything else. Gabapentin, even at a high dose, does nothing and so I suffer.  I cannot take this much longer. I cannot live with the nerve pain. Please help.

A few other clues that might be helpful for understanding this mess.  When I tried acupuncture to relieve the nerve pain, it made it worse. The hornet’s nest sting lit up. Ditto for niacin. When I was given niacin, my body reacted very strongly.  If there are doctors, researchers, patients, or anyone out there that can help reduce the pain I experience, who can help heal, reverse, or even just slow what seems to be a progression of increasing pain, please leave your comments here. Thank you.

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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