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

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

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

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

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

Primary Physician Checklist:

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

Fluoroquinolone Side Effects Aren’t Impressed by Checklists

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

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

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

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

There Is No Such Thing as a Fluoroquinolone Toxicity Specialist

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

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

We Need Your Help

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

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

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

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A Progressive Disintegration of Function: Macrobid Adverse Reactions

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macrobid nitrofurantoin adverse reactions

Hi, my name is Dana. I am 29 years old and in December of 2017, I suffered an adverse reaction to the antibiotic Macrobid. I walked into a minute clinic to treat a urinary tract infection (UTI) the night before Christmas Eve and the doctor gave me 100mg of Macrobid twice daily for 7 days. I have suffered from UTI’s quite a few times in my life and have ended up with a severe kidney infection and so I felt taking an antibiotic was my only option. I have taken Cipro 3 or 4 times in my life and never experienced an adverse reaction that I was aware of. However, I did take Levaquin around age 12 and remember having a horrifying reaction to it. I believe now that I may have been floxed at that time but was unaware of it then. All I could tell my parents was that I felt ‘weird’ and didn’t know what was happening to me. I laid on the couch in the basement for weeks remembering having vivid nightmares and an overwhelming sense of fear, heaviness in my arms and legs, and vision problems. I did recover from that, but Levaquin has been on my charts since age 12 as a drug I experienced horrible side effects from.

The Progressive Adverse Reactions to Macrobid

Within two days of starting Macrobid, I noticed some unpleasant side effects such as severe night sweats, constipation, spotty vision, dry mouth. None of it was affecting my everyday life, so I carried on as normal. Two weeks after stopping Macrobid, I began to feel extreme bouts of vertigo and noticed severely spotty vision and bad digestive issues. This was just the beginning of the nightmare that has unfolded in the past over 4 months.

I was driving my car for work in Chicago and started to feel extreme digestive distress. It was so bad that I had to pull over and wait for it to pass. A few days later, I was driving and the same thing happened. My mom rushed to the city to pick me up so we could go to urgent care. I had a complete blood panel done and everything came back normal. In fact, the doctor told me I had “beautiful blood.” When I questioned whether or not the recent antibiotic I took could have anything to do with it, he assured me that Macrobid does not affect the GI tract and sent me on my way with a prescription for antacids, some liquid to take with meals to coat the lining of my stomach. I never filled either prescription.

Weeks passed and my symptoms grew worse and worse. I began to experience severe bone and joint pain. I was running on the treadmill at the gym and after only two minutes I had to stop because the pain in my legs was so intense I couldn’t take it. I went from someone who worked out 4-5 times a week to not even being able to lift a 2 pound weight. I lost all strength in my arms and legs. I couldn’t even hold my arms up to wash my hair in the shower. I developed a severe sensitivity to sunlight, burning in my arms and legs, loss of feeling and tingling in my arms and legs, severe joint pain, severe digestive issues, anxiety to the point of feeling psychotic, shortness of breath, chills, extreme vision issues – seeing black spots, ringing in ears, 20 pound weight loss, overwhelming fear, crying spells, depression, abrupt wake ups in the middle of the night, confusion, hallucinations, loss of time and dates, and the list goes on.

Connecting the Dots: Macrobid Reactions Look Like Fluoroquinolone Reactions

At this point, I knew this drug was responsible for causing all of these symptoms, and I began to research. I came across the Facebook page Floxie Hope. A lot of these people’s stories sounded exactly like what I have been experiencing. Even though Macrobid is not in the fluoroquinolone class of antibiotics, it is fully able to cause the same horrific symptoms because I am living it. While reading their stories of recovery can be terrifying, I also find a lot of them hopeful. I hope to one day recover like a lot of the Floxies have. I hope and pray for these people every day, no one deserves to have this happen to them. Some people completely lose their ability to walk for months, and some people never fully recover. But, these stories are inspiring and recovery is possible.

In these past four months I have had to quit my job, lost my ability to drive, and for about two months, I lost my ability to function at all. I am slowly regaining function again, but the struggle is not over. I still cannot drive or work, but am noticing daily small improvements. A month ago I could not go for a five minute walk, but today I can go for 15 minutes.

My younger sister was married this past weekend. Even though I was able to be at her wedding, I wasn’t able to dance like I would have loved to or partake in most of the activities surrounding the day. I had to sit down a lot because even the smallest amount of physical activity tires me. I wasn’t able to go to her bachelorette weekend getaway, or even help her with simple tasks getting ready for the most important day of her life.

This nightmare is far from over, but with each day I hold onto the hope that I will one day return to my normal self. I love to exercise and I hope to one day be able to run again. I hope to one day be able to eat the foods I love again. I am a musician and I love to perform. Losing the energy to sing has maybe been the hardest part of this all. I hope to one day be able to perform a song again.

Another hard part has been trying to explain this to people that do not understand. A lot of people are unaware as to how often these adverse reactions to antibiotics and other meds have been happening. I can’t tell you how many people I’ve had undermining me or doubting my condition. I have had a handful of people telling me to get other opinions. People don’t want to believe this happens and won’t believe it unless it happens to them. I am making this my life goal to spread awareness to others of these dangerous drugs.

Recovery and Learning

I began working with a functional medicine doctor a month and a half ago, and I do believe it is helping speed up the process of recovery. Macrobid destroyed my gut, and I am on a strict diet and supplement protocol to try and repair my gut health. I had several labs done and stool test analysis of my gut flora. The test results showed I have severely elevated cortisol/DHEA levels, putting my body into an acute stress response. My hormones were also completely out of balance, with elevated levels of testosterone and progesterone. I am currently taking natural supplements to balance back out and take the stress off my adrenals working overtime. I also have gut dysbiosis, which is when the bad bacteria overrides the good bacteria and causes a plethora of health issues (chronic pain, fibromyalgia, arthritis, anxiety, depression, etc.). A lot of people end up with the deadly C-diff parasite after antibiotic use because it completely kills all of your guts healthy bacteria. So what do doctor’s offices and hospitals do? Give people MORE antibiotics!

Working with a doctor in functional medicine has, however, opened up a whole new door to cracking the code to my own previous issues prior to taking Macrobid. So maybe through all of this suffering, there is light on the other side. While I have been suffering immensely for over four months now, I have also been doing a ton of research on gut function and overall health.

For most of my 29 years, I have suffered from anxiety and digestive issues. I began taking prescription drugs at age 14 after suffering a panic attack in an 8th grade class, and that marked the beginning of living a life with anxiety.

From ages 15-25 I was seeing countless therapists and psychologists to try and correct my anxiety issues. I also was on a plethora of prescription drugs (Xanax, Busbar, Lexapro, Zoloft) but nothing seemed to help and I was a zombie. I also have suffered from acid reflux for most of my life, to where I would pop Zantac to relieve issues. My whole life I have been told that my anxiety was caused by an imbalance of serotonin and that it was ‘all in my head.’

Making the decision to see a functional doctor after my body started falling apart from Macrobid these past months has been one of the best decisions I’ve ever made. Within 15 minutes of meeting this doctor, he asked me if I was born via C-section. I was confused, but replied “yes” and that my mom had quite the traumatic delivery with me. I got home and what I started researching was mind-blowing to me. When we are born, our initial inoculation of healthy gut flora comes from our mothers birth canal. When babies are stripped of that and born via C-section, we aren’t properly inoculated with the healthy gut flora we need for a healthy functioning body, and the bad gut bacteria overrides the good. Not only has my life long struggle of panic attacks been real, but the shakiness, palm sweating, heart palpitations I have experienced are a result of having reactive hypoglycemic episodes due to low blood sugar caused by a poor functioning gut.

I have also learned that through being born by traumatic delivery, I have a poor functioning vagus nerve. The vagus nerve is the main nerve stemming from the brain that is responsible for many things, main one being control of your parasympathetic nervous system or ‘rest and digest system.’ People that have a poor functioning vagus nerve may deal with symptoms such as anxiety and poor digestion. There are a lot of new articles coming out about how to strengthen your vagus nerve and doing some of these exercises has helped a lot of the Floxies. My doctor has me stimulating my gag reflex before meals, gargling water several times a day, and humming or singing if I’m able to.

This information may not be as shocking to some people as it was to me. But the most shocking part of it all is that no doctor or psychologist EVER told me this information. Not because they are negligent, but because most of them do not even know. Who would consider that my poor gut function since birth and being born via C-section could be the cause of my lifelong struggle with panic attacks and anxiety? Look to your gut and you may find the root of all disease.

I urge people that struggle from digestive disorder, autoimmune disease, hormone imbalance, endometriosis, arthritis, osteoporosis, etc., to visit a doctor in functional medicine and get a complete panel done of your gut microbiome. As we age, our gut flora becomes compromised. Things like stress, standard American diet, and antibiotic use completely alters our gut flora causing premature aging and a whole list of health problems. For some of us, we’ve been compromised since birth. Life doesn’t have to be that way. We don’t have to live a life of pain and prescription drugs.

Had I had known this information sooner, my life would’ve been a lot different. I am now receiving natural treatment to restore my gut health, and hopefully, be able to live a normal life at some point. I also do daily exercises to stimulate my vagus nerve to improve digestion. I may have fallen apart from Macrobid, but I am seeing the light and hope in this nightmare I’ve been living the last 4 months. I only hope that full recovery is possible and that I will one day feel like myself again, maybe even better than I ever have before. I hope and pray for all these sick people and people who have been negatively affected by an antibiotic. All of your stories are inspiring and give me hope that recovery from this is possible.

We Need Your Help

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

Yes, I would like to support Hormones Matter. 

Share Your Story

If you have experienced a medication adverse reaction, please share your story. Contact us here.

Image by 5187396 from Pixabay.

This article was originally published on May 15, 2018.

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“The earth is badly floxed.”I’m not sure if the person who wrote that meant it literally or figuratively, but, I

Don’t Take Cipro, Levaquin or Avelox If….

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Lisa Bloomquist flouroquinolone antibiotics

There is a huge range in how people react to fluoroquinolone antibiotics (Cipro/Ciprofloxacin, Levaquin/Levofloxacin, Avelox/Moxifloxacin and Floxin/Ofloxacin). Some people take fluoroquinolones repeatedly and never experience an adverse reaction. Some people are left bed-bound after one pill, or one prescription. Some people take a full fluoroquinolone prescription without incident at one time in their life, then, when they take a second (or third, or fourth) prescription, their body goes hay-wire. Some people have a sudden and severe adverse reaction, where they are unable to move or think after previously being fine, and other people have a gradual onset of symptoms where they damage tendons or develop neuropathy slowly, over time.

What determines how a person reacts to fluoroquinolones? The black box warning label on fluoroquinolones states that, “risk (of tendinitis) 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.” But people who fit into those categories aren’t the only people who are hurt by fluoroquinolones. I didn’t fit into any of those categories. I was 32, athletic, strong, not on any medications, etc. when I was sickened by Cipro. I was healthy. But fourteen 500 milligram pills of Cipro (half taken in 2009 without incident and half taken in 2011 with a sudden severe adverse reaction) were enough to cause my body and mind significant harm.

I must have had risk factors that made me susceptible to fluoroquinolone toxicity though, because Cipro made me quite sick. I’m honestly not sure what those factors are (no one knows – or at least they aren’t publishing papers about it if they do). Perhaps those who are hurt by fluoroquinolones have depleted liver enzymes and therefore they aren’t able to metabolize drugs like people who have more robust supplies of drug metabolizing enzymes. Perhaps people who suffer from fluoroquinolone toxicity are depleted of cellular magnesium, as magnesium has been shown to have protective effects on cells that are exposed to fluoroquinolones. Perhaps the microbiome of those who are hurt by fluoroquinolones is depleted of good bacteria and an overwhelming number of bad bacteria in the gut leads to many of the symptoms of fluoroquinolone toxicity. Perhaps there are some people who are genetically predisposed toward having an adverse reaction to fluoroquinolones. As with everything, there is a mix of genetics and environment that goes into how the body reacts when faced with a chemical onslaught. Human bodies are unbelievably complex and multifaceted; once individual differences are considered, the complexity becomes mind-boggling.

Customizing medicine is difficult. The entire human genome, though sequenced, has not yet been mapped out. We are not at a point yet where we can easily and inexpensively test genes and interpret the results of genomic tests.

Genes aren’t the only things that determine how a person reacts to a drug. The microbiome also plays an important role in determining drug metabolism. Per an article entitled, Role of Intestinal Microflora in Xenobiotic-induced Toxicity, “individual differences in the intestinal microflora may result in individualized xenobiotic (a chemical or substance that is foreign to an organism or biological system) toxicities.” The differences in the bacteria in our gut make a difference in how drugs are metabolized. As the microbiome is changed, through drugs – especially antibiotics, the reaction of the individual patient to formerly well tolerated drugs, can change.

Until customizing medicine to the individual becomes feasible, what are doctors supposed to do to prevent their patients from having a dangerous adverse reaction to a drug? Drugs with potentially devastating adverse effects could be avoided entirely unless they are necessary to save a life. This is the policy that I would like to see applied to fluoroquinolones. (The cellular damage that fluoroquinolones inflict make their use inappropriate for infections that are not life-threatening.) Unfortunately, prudence in regards to prescribing fluoroquinolones is not the current trend. In 2011, 23.1 million prescriptions for fluoroquinolones were written in the U.S., and despite the 43 page warning label that comes with Cipro/Ciprofloxacin, fluoroquinolone toxicity is denied by many physicians. As much as I would like to cut the number of fluoroquinolone prescriptions by 90%, the entire medical establishment is not yet listening to me and others who are screaming about the pain and suffering caused by fluoroquinolones. To reduce the number of people hurt, either a study or news story must induce a paradigm shift enabling all doctors to see that fluoroquinolones are vastly more dangerous than penicillin, or patients (especially those in the risk categories listed below) must ask their doctors to not prescribe them.

Though the true risk factors for fluoroquinolone toxicity (genetic, enzyme and microbiome markers) are not yet established, there are some groups of people who are at higher risk of an adverse reaction than others. They should never be given fluoroquinolones. Those groups are:

  1. People who have had an adverse reaction to a fluoroquinolone in the past. Despite the fact that all of the warning labels for fluoroquinolones state that they should not be given to people with a history of hypersensitivity to fluoroquinolones, the recommendation that they be avoided is often ignored. This is the case because people often don’t realize that they are having a mild adverse reaction to a fluoroquinolone. Who would think that muscle twitches, insomnia, urgency when urinating or loss of endurance would be related to the administration of an antibiotic? The connection is so bizarre that it is often not recognized. A list of warning signs that your body has reached its threshold for fluoroquinolones can be found here: Warning Signs of Fluoroquinolone Toxicity.
  2. Athletes. It is well documented and known that fluoroquinolones degrade the structure of tendons. They “exert a toxic effect not only on tendons but also on cartilage, bone, and muscle,” per a Mayo Clinic affiliated article entitled Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population. Further information about why the Mayo Clinic researchers note that, “Athletes should avoid all use of fluoroquinolone antibiotics unless no alternative is available” can be found here: Deciphering the Pathogenesis of Tendonopathies: A Three Stage Process.
  3. People on steroids. Steroids are contraindicated with fluoroquinolones. As is noted in the Cipro/Ciprofloxacin warning label, people who are on corticosteroids are at an increased risk of tendonitis when administered fluoroquinolones. In addition to the increased risk of tendon damage, the combination of steroids and fluoroquinolones can increase the risk of development of a deadly glabrata fungal infection.
  4. People who need to take NSAIDs regularly. NSAIDs, and other drugs that contain a carboxylic acid molecule, are contraindicated with fluoroquinolone toxicity. Patients suffering from fluoroquinolone toxicity have reported adverse reactions to NSAIDs even weeks or months after they have stopped taking fluoroquinolones. The adverse interaction between fluoroquinolones / fluoroquinolone toxicity and NSAIDs is likely because of the formation of poisonous acyl glucuronides. Articles describing this process can be found on Fluoroquinolone Links and Resources.
  5. Immunocompromised individuals. Fluoroquinolones, and other broad spectrum antibiotics, kill good bacteria along with harmful bacteria. When the good bacteria in the gut are wiped out, they can no longer keep the bad bacteria, or fungal infections, in check. Fungal infections can take over a person’s body and they can be deadly. This can happen with people who have healthy immune systems. For people with already compromised immune systems, vulnerability to fungal infections may be increased. Per an article in Life Extension Magazine, “Anyone can acquire a fungal infection, but the elderly, critically ill, and individuals with weakened immunity, due to diseases such as HIV/AIDS or use of immunosuppressive medications (such as corticosteroids), have a higher risk.”
  6. People with mitochondrial dysfunction. Per an article entitled Mitochondrial Reactive Oxygen Species Control T Cell Activation by Regulating IL-2 and IL-4 Expression: Mechanism of Ciprofloxacin-Mediated Immunosuppression, “ciprofloxacin was also shown to deplete the mitochondrial DNA (mtDNA) content, thus leading to mitochondrial dysfunction and retarded cellular growth.” Ciprofloxacin and other fluoroquinolones damage mitochondria. Those with preexisting mitochondrial dysfunction will suffer more as their mitochondria are further damaged.
  7. Children. Fluoroquinolones have been shown to degrade cartilage in juvenile animals and, for this reason, are generally considered to be contraindicated in the juvenile population. Unfortunately, children are still prescribed fluoroquinolones by pediatricians who are unaware of the severity of adverse reactions to fluoroquinolones.

Until medicine is more individualized and every factor that makes a person more or less susceptible to experiencing an adverse reaction to a drug can be tested before that drug is administered, everyone who takes a fluoroquinolone is at risk of experiencing an adverse reaction. The best way to protect oneself from fluoroquinolone toxicity is to not take a fluoroquinolone. Though there are some risk factors that make some groups of people more susceptible to experiencing a severe adverse reaction to fluoroquinolones than others, there is no guarantee that not fitting into one of those groups will ensure your safety. With that noted, the people who fit into any of the seven categories listed above should avoid fluoroquinolones whenever possible.

Information about Fluoroquinolone Toxicity

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

Participate in Research

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

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

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

What Else Can I Do To Help?

Hormones MatterTM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

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This post was published previously on Hormones Matter in January 2014.

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Who Reads the Drug Warning Labels?

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

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

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

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

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

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

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

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

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

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

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

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

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Photo by Bruno Guerrero on Unsplash.

This article was published previously in October 2013.  

 

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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.

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