fluoroquinolone neuropathy

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.

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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.

Cipro, Levaquin and Avelox are Chemo Drugs

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When I first heard people referring to fluoroquinolone antibiotics (Cipro, Levaquin, Avelox, Floxin and a few others) as “chemotherapy drugs,” I thought that they were exaggerating or incorrect.  After all, fluoroquinolones are used to treat urinary tract infections, traveler’s diarrhea, anthrax, and other bacterial infections, not cancer. But then I started to do some research into how fluoroquinolones work and I discovered that they cause mitochondrial damage, which leads to oxidative stress and cell death (1, 2), they interfere with the DNA replication process of mitochondria (3), they disrupt tubulin assembly (4) and that they are being investigated for their tumor killing abilities (5, 6).  I also found that all other drugs that have the same mechanism for action as fluoroquinolones – topoisomerase interrupters (FDA warning label, 7) (topoisomerases are necessary for proper DNA replication) – are used as chemotherapy drugs – topotecan, amsacrine, etoposide, etc.  Fluoroquinolones are, truly, chemotherapy drugs – they just happen to be used as popular antibiotics. They can kill cancerous tumor cells because, in addition to killing bacterial cells, they also kill eukaryotic cells (8, 9).

Use of Fluoroquinolones for Cancer Treatment is Appropriate

There are almost certainly some legitimate and reasonable uses for fluoroquinolones as chemotherapy drugs (10).  As tumor killing agents, they may save lives of those with cancer.  Unfortunately, they’re not as targeted as the chemotherapy drugs that are currently in use.  Many chemotherapy drugs on the market specifically target quickly dividing cells – like tumor and hair cells; so they kill the cancer cells while leaving most other cells intact. Fluoroquinolones aren’t that precise. They indiscriminately kill cells throughout the body – including neurons and lymphocytes (11) (immune system cells).  The mitochondrial DNA (mtDNA) replication process is disrupted by fluoroquinolones (3), and the disruption of that process leads to mitochondrial damage, oxidative stress and cell death (12).  Fluoroquinolones are effective cell killers, but because they are indiscriminate cell killers, they are a step backward in chemotherapy drug technology.

Lousy Chemo Drugs?  Let’s Use Them as Antibiotics for Everyone!

Because they are not particularly good chemotherapy drugs, fluoroquinolones are rarely used for the purpose of killing cancer cells.  Instead, they are used as antibiotics. They are prescribed to treat sinus infections, bladder infections, strep throat, and they are even prescribed prophylactically (typically for future treatment of travelers’ diarrhea) when no infection is present. They kill bacteria, and are effective antibiotics, but they also damage mitochondria and destroy cells and therefore have many of the same side-effects as chemotherapy drugs, because, as noted above, they are chemotherapy drugs.

Side-Effects of Fluoroquinolones, and Other Chemotherapy Drugs

Some of the side-effects that fluoroquinolones share with chemotherapy drugs are (13, 14, 15, 16 and the FDA warning label for Ciprofloxacin – the warning labels for Levofloxacin and the other fluoroquinolones are similar):

  • Exhaustion / Loss of energy / Fatigue
  • Brain-fog / Loss of cognitive abilities
  • Anemia
  • Muscle Loss / Wasting
  • Neuropathy / Peripheral Neuropathy / Fibromyalgia

Additionally, Fluoroquinolones destroy connective tissue, especially tendons.  (17, 18, 19)

When one thinks of fluoroquinolones as chemotherapy drugs as opposed to antibiotics (yes, they do kill bacteria, but they should not be thought of in the same terms as benign drugs like penicillin and cephalosporins), many aspects of adverse reactions to fluoroquinolones make sense. Like several other chemotherapy drugs, there is a tolerance threshold (and/or lifetime limit) for fluoroquinolones (20, 21). Many people don’t react to their first dose of a fluoroquinolone. Rather, they tolerate the drugs up to a point – then they can no longer tolerate them and Fluoroquinolone Toxicity results. For fluoroquinolones, and possibly for other chemotherapy drugs, this tolerance threshold issue is because mitochondria are able to withstand a certain amount of damage before a disease state ensues. It is only after the tolerance threshold for damage is crossed that mitochondria stop adapting to harmful stimuli and a disease state ensues. (22)

Cellular Damage from Chemo Drugs can Lead to Cancer – Isn’t that Ironic?

Destruction of mitochondrial DNA can result in mitochondrial dysfunction and oxidative stress – which lead to apoptosis and necrosis of cells (23). When this occurs, a multi-symptom, chronic, autoimmune-disease-like reactions can occur (24, 25). However, if cell damage occurs but the cell does not die, but rather replicates the DNA errors, cancer can result (26, 27, 12).

Additionally, drugs that inhibit CYP450 liver enzymes [Cytochrome P450 enzymes metabolize xenobiotics and foreign chemicals from the body. (28)] leave people more susceptible to cancer-causing pathogens (29). Fluoroquinolones inhibit multiple CYP450 enzymes (30, FDA warning label). How ironic, isn’t it? Cancer can result from chemotherapy drugs. And when it is understood that fluoroquinolones are chemotherapy drugs that damage mtDNA and cause oxidative stress and apoptosis/necrosis, the irony of chemotherapeutic drugs causing cancer becomes horrifying, as opposed to thought-provoking.

Cellular Harm Results from Willful Ignorance About the Effects of Fluoroquinolones

There are articles that say that fluoroquinolones have an excellent safety record. (31)  None of those articles look at the effects of these drugs on the mitochondria – the depletion of mtDNA, the oxidative stress that results from damaged mitochondria, the DNA damage that is caused by the oxidative stress, etc.  In not looking at mitochondria, those articles are looking at the wrong things and they in no way negate the findings of the articles that note the deleterious effects of fluoroquinolones on human cells.

While it may be appropriate to give drugs that disrupt the process of mitochondrial DNA replication, have horrific side-effects and cause indiscriminate cell death, to people who are have cancer, it is absurd to give them to people who are healthy other than a minor infection. Even for major, difficult to treat infections, fluoroquinolones should be the drugs of last resort because of their effects on mitochondria. (1, 32)  Chemotherapy drugs should be used exclusively in life-or-death situations. They should not be used frivolously or without true informed consent of the patient, or without awareness of the consequences of the drug on the part of both the physician and the patient. Protocols should be in place for ensuring that they are used appropriately and that all parties are aware of the consequences of the drugs.

Sadly, appropriate informed consent around fluoroquinolones involves a complete shift in how physicians and patients alike think about them. In order for the risks of taking fluoroquinolones to be properly acknowledged, all parties involved need to see, and acknowledge, that fluoroquinolones are chemotherapeutic drugs that cause mitochondrial destruction and cell death, and that they should not be used lightly. But because fluoroquinolones have been given out frivolously – 26.9 million prescriptions for oral and IV fluoroquinolones were given out in 2011 alone (33) for simple infections, I don’t foresee the shift in how they are perceived as an easy one. It must involve many doctors admitting that they have been prescribing these drugs incorrectly for decades, that they have been wrong about the severity of adverse effects, and that they have been misled about the risks of fluoroquinolones.

The Effects of Drugs on Mitochondria are Systematically Disregarded

It should also be noted that the effects of drugs on mitochondria are systematically disregarded. Mitochondrial function, and drug-induced dysfunction, is important to all areas of human health.  An article published in Molecular Nutrition and Food Research entitled Medication Induced Mitochondrial Damage and Disease” noted that the effects of drugs on mitochondria are ignored by both the drug companies and the FDA when reviewing drug safety. Because of this omission in review and oversight, human mitochondrial DNA have been repeatedly damaged by fluoroquinolones and other pharmaceuticals. The consequences of this are, as of yet, unknown. (Though it should be noted that mitochondria and the signals that they produce influence gene expression (35) and that an article published in Nature in July, 2013 entitled “Topoisomerases Facilitate Transcription of Long Genes Linked to Autism” showed that topoisomerase interrupting chemotherapy drugs effect the expression of genes linked to Autism.) We can only hope that the FDA’s failure to force drug reviewers to look at the effects of drugs on mitochondrial DNA isn’t horribly consequential.

Sources:

  1. Science Translational Medicine, “Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells”
  2. British Journal of Cancer, “Ciprofloxacin Induces Apoptosis and Inhibits Proliferation of Human Colorectal Carcinoma Cells
  3. Molecular Pharmacology, “Delayed Cytotoxicity and Cleavage of Mitochondrial DNA in Ciprofloxacin Treated Mammalian Cells
  4. Current Medicinal Chemistry, “Recent Advances in the Discovery and Development of Quinolones and Analogs as Antitumor Agents
  5. Inorganic Chemistry, “New uses for old drugs: attempts to convert quinolone antibacterials into potential anticancer agents containing ruthenium
  6. Asian Pacific Journal of Cancer Prevention, “Comparative Evaluation of Antiproliferative Activity and Induction of Apoptosis by some Fluoroquinolones with a Human Non-small Cell Lung Cancer Cell Line in Culture
  7. Mutation Research, “Ciprofloxacin:  Mammalian DNA Topoisomerase Type II Poison In Vivo
  8. The Journal of Biological Chemistry, “Cytotoxicity of Quinolones toward Eukaryotic Cells:  Identification of Topoisomerase II as the Primary Cellular Target for the Quinolone CP-115,953 in Yeast
  9. Antimicrobial Agents and Chemotherapy, “Effects of Novel Fluoroquinolones on the Catalytic Activities of Eukaryotic Topoisomerase II:  Influence of the C-8 Fluorine Group
  10. Urology, “Quinolone antibiotics: a potential adjunct to intravesical chemotherapy for bladder cancer
  11. Nepal Medical College Journal, “Genotoxic and cytotoxic effects of antibacterial drug, ciprofloxacin, on human lymphocytes in vitro
  12. Toxicology and Applied Pharmacology, “Mitochondrial abnormalities–a link to idiosyncratic drug hepatotoxicity?
  13. National Cancer Institute, “Chemotherapy Side Effects Sheets
  14. The Annals of Pharmacotherapy, “Peripheral Neuropathy Associated with Fluoroquinolones
  15. Indian Journal of Psychiatry, “Levofloxacin Induced Acute Psychosis
  16. Journal of Antimicrobial Chemotherapy, “Peripheral Sensory Disturbances Related to Treatment with Fluoroquinolones
  17. The American Journal of Sports Medicine, “The Effect of Ciprofloxacin on Tendon, Paratenon, and Capsular Fibroblast Metabolism
  18. Physical Medicine and Rehabilitation (PM & R) “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population
  19. Laboratorie de Toxicologie, “In Vitro Discrimination of Fluoroquinolones Toxicity on Tendon Cells:  Involvement of Oxidative Stress
  20. Carcinogenesis, “Mechanisms of tolerance to DNA damaging therapeutic drugs
  21. Non-Hodgekin’s Lymphoma Cyberfamily
  22. Molecular Interventions, “Mechanisms of Pathogenesis in Drug Hepatoxicity Putting the Stress on Mitochondria
  23. Toxicology and Applied Pharmacology, “Mitochondrial abnormalities–a link to idiosyncratic drug hepatotoxicity?”
  24. Cleveland Clinic Journal of Medicine, “Mitochondrial cytopathy in adults: What we know so far”
  25. Antimicrobial Agents and Chemotherapy, “Ciprofloxacin Induces an Immunomodulatory Stress Response in Human T Lymphocytes
  26. Scitable by Nature Education, “DNA Replication and Causes of Mutation
  27. British Journal of Haematology, “Topoisomerase II Inhibitor Related Acute Myeloid Leukaemia”
  28. Mutation Research/Fundamental and Molecular Mechanisms of Mutagenesis, “Role of cytochromes P450 in chemical toxicity and oxidative stress: studies with CYP2E1
  29. Europe Pubmed Central, “Role of cytochromes P450 in drug metabolism and hepatotoxicity.”
  30. Pharmacy Times, “Get to Know an Enzyme: CYP1A2
  31. Expert Reviews, “Levofloxacin: update and perspectives on one of the original ‘respiratory quinolones’
  32. Journal of Young Pharmacists, “Oxidative Stress Induced by Fluoroquinolones on Treatment for Complicated Urinary Tract Infections in Indian Patients
  33. FDA Drug Safety Communications, “FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection
  34. Molecular Nutrition and Food Research, “Medication Induced Mitochondrial Damage and Disease
  35. BBA, “Mitochondrial DNA Damage and its Consequences for Mitochondrial Gene Expression
  36. Nature, “Topoisomerases Facilitate Transcription of Long Genes Linked to Autism

 

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.

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Fluoroquinolone Neuropathy Feels Like Acid Burning and Electrocution

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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.

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

What Else Can I Do To Help?

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

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