Tag Archives: Cipro

Floxie Hope Podcast Episode 26 – Tamara

I had the pleasure of interviewing Tamara for Episode 26 of The Floxie Hope Podcast.

Please check out the podcast through these links:

http://www.floxiehopepodcast.com/026-tamara/

Or

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

You can also read about Tamara’s journey:

https://floxiehope.com/tamaras-story-cipro-toxicity/

Tamara wrote her recovery story back in 2014. She has since had a beautiful, healthy, vivacious little girl, and her life has changed significantly in the last 4 years.

She speaks about her journey through fluoroquinolone toxicity, and how her life has changed in the last 4+ years since she was hurt by Cipro in this episode of The Floxie Hope Podcast.

Thank you for sharing your journey, Tamara!

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Subscriptions, reviews, and shares of The Floxie Hope Podcast are greatly appreciated! Please let me know if you have questions about how to do any of those things.

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Fluoroquinolone Antibiotics Associated with Carpal Tunnel Syndrome

It is well-known and well-documented that fluoroquinolones weaken and destroy musculoskeletal tissues–especially, but not limited to, tendons. 

Additionally, it is known that fluoroquinolones cause neurological problems, and can lead to painful and debilitating peripheral neuropathy. (In 2013, fluoroquinolone warning labels were updated to note that Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Floxin/ofloxacin can cause permanent and disabling peripheral neuropathy.)

Given that fluoroquinolones disproportionately affect the tissues in joints, and that they also adversely affect nerves (causing painful neuropathy), it’s not surprising that fluoroquinolone antibiotic use is associated with Carpal Tunnel Syndrome (CTS)–a medical condition that includes “pain, numbness, and tingling, in the thumb, index finger, middle finger, and the thumb side of the ring fingers,” as well as weakness and muscle wasting.

Both CTS and fluoroquinolone-use are common in America, and researchers Jasmine Z. Cheng, Mohit Sodhi, Mahyar Etminan, and Bruce C. Carleton, examined how they are related in “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” published in the journal Clinical Infectious Diseases in August, 2017.

In “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” the researchers found that, “Any use of FQ within the year prior to CTS diagnosis was associated with a 34% and 36% increased risk of CTS in the primary and sensitivity analyses, respectively” and that:

“The results of our study are consistent with an increase in the risk of CTS with FQs. The risk was consistent among all risk periods with a slight increase among past users, which may be due to the longer period elapsed for CTS to manifest itself. FQ-related neurotoxicity can persist cumulatively in relation to exposure levels [8, 9]. The exact mechanism by which this occurs is unknown [9], but proposed models include direct nerve inflammation and ischemia from toxic metabolite and free radical formation [10], and FQ-induced tendonitis/tendinopathy causing mechanical compression upon the adjacent nerves (eg, median nerve) that share the carpal tunnel [11]. Reports of nerve biopsy studies on patients who have experienced FQ adverse events have revealed significantly reduced nerve fiber density consistent with small fiber neuropathy, which may be a potential mechanism of CTS [12]. Although neurotoxicity is the second most commonly reported adverse event, with several studies documenting FQ association with central and peripheral nerve damage [8, 9], this is the first large-scale study exploring the relationship between FQs and CTS.”

CTS is a malady that affects thousands of people and has societal costs in the millions of dollars. In “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” the researchers note that:

“CTS is a disease of significant societal burden with a prevalence of 5% and incidence of up to 2.3 per 1000 person-years [4, 5]. CTS causes loss of function and decreased quality of life for individual patients, and also comprises a large cumulative drain on healthcare and socioeconomic resources from loss of productivity and worker’s compensation claims [6]. One study of 4443 CTS claimants in Washington State estimated a cumulative socioeconomic cost of US$197–$382 million over 6 years for this cohort alone [6].”

Fluoroquinolones are increasing the risk of CTS in millions of people (20+ million prescriptions for fluoroquinolones are written each year). Are doctors or patients aware that they are increasing the patient’s chances of CTS–a painful, debilitating, and costly condition–when fluoroquinolone antibiotics are taken? I doubt it, but they should be.

Please spread the word about how dangerous fluoroquinolones are by sharing posts, news articles, and research articles that connect fluoroquinolones with other illnesses. It wouldn’t occur to most people that a commonly prescribed class of antibiotics could be connected with CTS, psychiatric illness, pain, pseudotumor cerebri, tendon damage and ruptures, or multi-symptom chronic illnesses. But fluoroquinolones ARE connected with those, and other, diseases and syndromes. Articles like “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” help to provide evidence of the extensive damage that fluoroquinolones do, and I am grateful to the researchers who examined the connections. Please spread the word so that doctors and patients alike are informed. Thank you.

 

 

Fluoroquinolone Antibiotics Increase Risk of Birth Defects

A few years ago, a friend from high school who was in her second trimester of pregnancy with her second child, reached out to me to ask me what antibiotics she should avoid. She had pneumonia, and was on her way to the doctor’s office. I told her that she should steer clear fluoroquinolones (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Floxin/ofloxacin).

Being an empowered and skeptical person, my friend didn’t just take my word for it that fluoroquinolones were dangerous, she did her own research and noted that the warning label for Cipro/ciprofloxacin stated:

Pregnancy Category C There are no adequate and well-controlled studies in pregnant women. CIPRO should not be used during pregnancy unless the potential benefit justifies the potential risk to both fetus and mother. An expert review of published data on experiences with ciprofloxacin use during pregnancy by TERIS–the Teratogen Information System–concluded that therapeutic doses during pregnancy are unlikely to pose a substantial teratogenic risk (quantity and quality of data=fair), but the data are insufficient to state that there is no risk.2

With that information in-hand, she was empowered to adamantly refuse the prescription for Cipro that her doctor wanted to give her, and instead insisted that she get a prescription for a safer antibiotic (a pregnancy category B antibiotic).

I was relieved beyond words when she told me that she had refused the Cipro prescription. She wasn’t going to get floxed, and whatever effects the Cipro may have had on her baby were avoided.

Study Indicates that Fluoroquinolones May Increase Risk of Birth Defects

A recent study in the British Journal of Pharmacology, “Use of antibiotics during pregnancy and the risk of major congenital malformations: a population based cohort study” has shown that, “antibiotics in the class called quinolones — ciprofloxacin, levofloxacin and others — are particularly dangerous and should be avoided in pregnancy.”

The study, which “followed 139,938 mothers of babies born in Quebec from 1998 to 2008, tracking their antibiotic use in the first trimester, and their babies’ birth defects through the first year of life” found that:

Moxifloxacin exposure was associated with a 5-fold increased risk of respiratory system malformations and ofloxacin use with an 8-fold increased risk of MCMs. However, these results should be interpreted with caution given the small number of exposed cases.

Teratogenicity of quinolone has been reported in the literature in animal and experimental studies [50, 51]. Indeed, quinolones can act as DNA gyrase inhibitors and also as mitotic inhibitors [52]. This may partially damage DNA and induce fetal malformation, which supports our findings [52].

The other antibiotics examined were also more dangerous during pregnancy than I think any pregnant woman should feel comfortable with, but fluoroquinolones were found to be particularly dangerous.

Too Many Pregnant Women are Prescribed Fluoroquinolone Antibiotics

My friend had a healthy son, and he is now a happy and healthy toddler. She took antibiotics (but not fluoroquinolone antibiotics) during pregnancy, but her son was not negatively affected.

My friend was fortunate. However, most pregnant women don’t have a high school friend who incessantly posts about the dangers of fluoroquinolones, and many of them take fluoroquinolones during pregnancy without being aware of the risks these drugs pose to them or their babies. Doctors who prescribe fluoroquinolones to pregnant women, when there are safer alternative antibiotics, are endangering women and children, and there is nothing okay about that.

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New York Times, “Certain Antibiotics May Increase Risk of Birth Defects

British Journal of Clinical Pharmacology, “Use of antibiotics during pregnancy and the risk of major congenital malformations: a population based cohort study

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A Letter About How to Get Through Fluoroquinolone Toxicity

A few months ago I received an email from a floxed individual (whom I’ll call “T”) that really succinctly and perfectly summed up what I’m trying to convey with this web site. I asked him if I could share his message and he gave me his blessing. This is what he said:

In your first Floxie Hope Podcast, you said you wanted to change the world. I just wanted to let you know that you changed my world. I suspected that my symptoms were caused by Cipro, but I wasn’t sure until I found your website. All of the stories sounded so similar to mine. So much suffering, and nothing the doctors could do about it.

I read your posts and your e-book eagerly, trying to figure out what I could do and what I could expect. I learned a lot and followed a lot of suggestions, trying to find what worked best for me. Throughout my struggles, several things you wrote or posted stuck with me and helped me get through, including the following.

Stay alive – This seems obvious, but it’s not. There were times during the dark days, when I was at my worst, that suicide seemed like the most obvious choice. I knew I could not endure the life I was living for very long, and I was a burden on my wife. It was her that kept me going through those times. I wanted to see if I could get better so I could be there for her when she needed me, and do the things she needed me to do.
Keep going – This was difficult, because every nerve in my body was telling me to stop. It took a lot of effort and will to keep moving, but I knew it was important, so I did what I could.
Nothing is permanent – It was terrifying to think that the suffering I was experiencing could continue for the rest of my life. When I stopped and thought about my symptoms, I realized that they were very dynamic and were changing all the time. Hopefully, they would change for the better.
Patience and hope – In reading the recovery stories, the two most common things that helped people were time and a positive mental attitude. I kept telling myself and those around me that I would get better. There were times that I didn’t believe it, but eventually I did improve.

It has been almost 18 months since my last dose of Cipro. I can’t say I’m fully healed because I still have symptoms, but they are not nearly as severe as they were a year ago. My focus has shifted from hoping to coping, and I feel like I have my life back. I believe that if I keep up the healthy lifestyle habits I started, I will continue to improve. Thank you for all your encouragement, and for spreading the word about the perils of Fluoroquinolone antibiotics.

I have received countless lovely emails from people who have been floxed that have written beautiful messages to me. They are all appreciated! There’s something about T’s message that stuck with me though, and I wanted to share the message with you.

When I read T’s message I thought, “Exactly – that’s exactly what I’m trying to get across.” Staying alive, keeping going, realizing that our health status fluctuates, patience, and hope, are all so important in getting through the pain and suffering of fluoroquinolone toxicity. I even think that those things help with healing.

Thank you, T, for your lovely, kind, thoughtful, and generous message! I hope that others are getting those messages of hope from Floxie Hope too.

I also hope that T’s email, and this post, serve as a reminder to those of you who are struggling right now. Stay alive. Keep going. Nothing is permanent. Be patient. Have hope. Those things will get you to tomorrow, and tomorrow is a new, hopefully brighter, day. Continue getting to tomorrow, after tomorrow, after tomorrow – perhaps healing, recovery, coping, acceptance, change, relief, or whatever you seek, is in one of those tomorrows.

 

Do Fluoroquinolones Cause Cerebrospinal Fluid Leaks?

It is well known that fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, and a few others) damage connective tissues–including musculoskeletal connective tissues like tendons, cartilage, bone, and muscle, as well as other connective tissues such as ocular tissue (including the retina), eardrums, and cardiac/heart tissue. Multiple studies have found that fluoroquinolones are toxic and damaging to connective tissues. Given the wide differences in tissues that fluoroquinolones have been shown to deleteriously affect–from cartilage to cardiac/heart tissue–it is reasonable to assert that they damage all connective tissues throughout the body. (Read any of the articles in the citations listed below for information about how fluoroquinolones damage connective tissues.)

Given that fluoroquinolones damage connective tissues (probably all connective tissues), I have a new, developing, hypothesis for how fluoroquinolones lead to fluoroquinolone toxicity syndrome/fluoroquinolone associated disability (FQAD). Please keep in mind that this is one of many hypotheses, and it is just one among about a dozen possibilities (you can read about some of the other possibilities on the post What is Fluoroquinolone Toxicity, or through the free ebook Hacking Fluoroquinolones.)

Hypothesis:

Fluoroquinolones damage the dura (dura mater)–the layer of connective tissue that surrounds the brain and spinal cord and keeps spinal fluid around those vital organs. This leads to spinal fluid leakage, which leads to many symptoms of fluoroquinolone toxicity, including:

  • Headaches (Including chronic migraines)
  • Autonomic nervous system dysfunction including POTS (postural orthostatic tachycardia syndrome) symptoms
  • Nausea and/or vomiting
  • Ringing in the ears (tinnitus) and hearing changes
  • Neck pain and stiffness
  • Radicular pain
  • Memory and cognitive problems (and other “neurolgic weirdness”)
  • Fatigue
  • Tachycardia (Racing heart/heart palpitations)
  • Dizziness (especially upon standing)

This wonderful lecture by Dr. Ian Carroll describes how cerebrospinal fluid leaks can lead to symptoms of many illnesses, including “mysterious” diseases like POTS, ME/CFS, fibromyalgia, as well as heart palpitations and severe headaches.

I suggest that you watch the entire video, as well as Dr. Carroll’s other videos on youtube. Here are some notes/highlights from the video above:

  • Many symptoms of POTS are actually cerebrospinal fluid leaks
  • The spinal cord is surrounded by tissue called the dura, and the dura holds cerebrospinal fluid around the spinal cord and brain. It’s like a water-tight bag that holds in cerebrospinal fluid and maintains pressure.
  • What causes people to have cerebrospinal fluid leaks?
    • Messed up connective tissue
      • From connective tissue disorders like ehlers danlos syndrome
      • (From fluoroquinolones???)
    • Something calcified and boney sticking into the dura
      • Bulging discs
    • Iatrogenic damage
      • Lumbar punctures
      • Epidurals
      • Back surgery
    • Car accidents (and other types of jarring, high-speed accidents)
      • Whiplash
  • How do you know if you have messed up connective tissue?
  • Calcium spikes sticking into the dura are difficult to detect via MRI, but they are clearer with a ct myelogram.
  • “Neurologic weirdness” is a sign of cerebrospinal fluid leaks. If someone is more confused later in the day, that can be an example of neurologic weirdness that results from a leak.
  • Cerebrospinal fluid leaks are misunderstood and under-recognized.
    • Post-puncture cerebrospinal fluid leaks are recognized.
    • Longer term cerebrospinal fluid leaks are less recognized and they present differently.
  • Post Dural Puncture Headache (PDPH) vs. Spontaneous Leak
    • Post Dural Puncture Headache (PDPH)
      • Single leak, orthostatic headache, 90% response to single EBP, Natural history understood and mostly benign, rarely mysterious, young women most at risk, fixable.
    • Spontaneous Leak
      • 30-40% multisite leak, late day headache, exertional headache, non-orthostatic CDH, 30% response to single EBP, natural history poorly understood and marked by chronic disability, often mysterious, HDCT, fixable.
  • There are people out there who have cerebrospinal fluid leaks that aren’t being recognized. Many people with cerebrospinal fluid leaks are misdiagnosed. Cerebrospinal fluid leaks are fixable and it is a shame that they aren’t all being recognized.
    • Cerebrospinal fluid leaks are NOT RARE.
  • Symptoms of cerebrospinal fluid leaks:
    • Headache, nausea and/or vomiting, ringing in the ears and hearing changes, neck pain and stiffness, radicular pain, neurological weirdness, fatigue
  • The effects of cerebrospinal fluid leaks on the pituitary gland
    • The pituitary gland is enlarged (How does this affect hormones???)
    • The connection between the pituitary gland and the brain can be disturbed, and this can lead to hormonal disruptions. High prolactin is an indicator of this problem.
  • Cerebrospinal fluid leaks can cause sagging of other parts of the brain.
  • MRIs of people suffering from cerebrospinal fluid leaks often appear normal. They are subtle and most doctors aren’t trained to see them.
  • Treatment of cerebrospinal fluid leaks
    • Epidural blood patches (Dr. Carroll describes how they’re done)
  • Cerebrospinal fluid leaks are NOT RARE, they’re just misdiagnosed and under-recognized

Before I watched Dr. Carroll’s lecture, I knew that cerebrospinal fluid leaks were painful and debilitating, but I didn’t realize that they were connected to “mysterious” disease symptoms or autonomic nervous system damage.

Connecting cerebrospinal fluid leaks to fatigue, a racing heart, blood pressure and blood sugar irregularities, tinnitus, cognitive and memory problems, hormonal abnormalities, etc. establishes a plausible connection between the (well-established) connective tissue damage done by fluoroquinolones, and the array of chronic, mysterious, disease symptoms that people with fluoroquinolone toxicity suffer from. Perhaps fluoroquinolones cause an array of debilitating chronic, mysterious illness symptoms through damaging the dura and allowing cerebrospinal fluid to leak–which leads to multiple symptoms of fluoroquinolone toxicity (and other chronic illnesses). It certainly seems like a plausible hypothesis to me. It actually seems like an easier hypothesis to postulate and prove than many of the other hypotheses regarding fluoroquinolone toxicity that have been put forth. As I noted above, the damage that fluoroquinolones do to connective tissues is well-established and recognized, and if someone looked at the effects of fluoroquinolones on dura mater tissue specifically, this hypothesis would be easily testable.

Some additional evidence supporting the possible connection between fluoroquinolones and cerebrospinal fluid leaks comes from the large number of people in cerebrospinal fluid leak support groups that have taken fluoroquinolones in the past who assert that fluoroquinolones contributed to their cerebrospinal fluid leak. I know that asking people in facebook support groups doesn’t count as a scientific study, but (to the best of my knowledge) no scientific studies of the link between fluoroquinolone use and cerebrospinal fluid leaks has been done, and the testimonials of the people who have cerebrospinal fluid leaks are important–they point both researchers and fellow patients toward research that may provide answers.

I also find it to be interesting that cerebrospinal fluid leaks affect the pituitary gland, which affects hormone production and regulation. Many people with fluoroquinolone toxicity syndrome have hormonal problems–from tanked testosterone to thyroid abnormalities. Maybe fluoroquinolones cause damaged dura tissue, which causes cerebrospinal fluid leaks, which causes pituitary gland structural abnormalities, which causes hormonal dysregulation, which causes multi-symptom chronic illness symptoms.

Dr. Carroll’s hypotheses and observations are fascinating and exciting for those who are dealing with fluoroquinolone toxicity and other multi-symptom, chronic, mysterious illnesses. I hope that they are explored further. Dr. Carroll’s results with patients are incredibly promising, exciting, and hopeful for people who are suffering from multi-symptom, chronic, mysterious illnesses–including those suffering from fluoroquinolone toxicity. I hope that Dr. Carroll, or other clinicians or researchers, look into the connections between fluoroquinolones and chronic cerebrospinal fluid leaks. It’s possible that the connections could lead to a comprehensive theory of fluoroquinolone toxicity, and may also lead to breakthroughs in other chronic illnesses.

Citations:

Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population. Hall, Mederic M. et al. PM&R , Volume 3 , Issue 2 , 132 – 142

Etminan M, Forooghian F, Brophy JM, Bird ST, Maberley D. Oral Fluoroquinolones and the Risk of Retinal Detachment. JAMA. 2012;307(13):1414-1419. doi:10.1001/jama.2012.383

Lee C, Lee MG, Chen Y, Lee S, Chen Y, Chen S, Chang S. Risk of Aortic Dissection and Aortic Aneurysm in Patients Taking Oral Fluoroquinolone. JAMA Intern Med. 2015;175(11):1839-1847. doi:10.1001/jamainternmed.2015.5389

Adel Alrwisan, Patrick J. Antonelli, Almut G. Winterstein; Quinolone Ear Drops After Tympanostomy Tubes and the Risk of Eardrum Perforation: A Retrospective Cohort Study. Clin Infect Dis 2017; 64 (8): 1052-1058. doi: 10.1093/cid/cix032

 

Floxie Hope Podcast Episode 21 – James

James is featured in Episode 21 of The Floxie Hope Podcast.

Check it out:

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

http://www.floxiehopepodcast.com/episode-021-james/

James also shared his story in writing, and you can read it here – https://floxiehope.com/james-story-hurt-by-metronidazole-then-cipro/. He goes into more detail in the podcast though, and I highly recommend that you listen in. Thank you for sharing your story, James!

James was 24 years old when he was floxed. He lost his grip strength after taking a single pill. After that, he experienced pain, burning pain in his legs, his eyes hurt, he had floaters in his vision, visual snow, loss of ability to sweat, weight loss, stiff and weak legs, nerve pain, brain fog, and anxiety.

He was acutely sick for 9 months. Even though he has recovered to the point where he is able to do his job again, he is not quite at 100% yet. He’s getting there though. He has a new perspective on health, healing, and happiness that is helping him immensely.

Thank you for listening to James’ insightful and uplifting story!

(Again, I apologize about the sound quality. There is still a lot of beneficial information in the podcast, despite the static and echoes.)

 

A Fluoroquinolone Toxicity Post Goes Viral

A post about fluoroquinolone toxicity, i.e. getting “floxed,” i.e. getting “ruined” by Cipro, has gone viral.

Check it out!

This antibiotic will ruin you.

It has been shared more than 10,000 times on Facebook (probably closer to 20,000 – the web site stops updating each share after 10,000 shares) – including more than 6,000 shares from The Fluoroquinolone Wall of Pain Facebook page.

It is resonating with thousands of people, who are not only reading it, they are sharing it. It has been viewed by MILLIONS of people. The author, Amy, posted on her facebook page that, in just a couple days, the post has been viewed more than 4 million times. That’s amazing!

Please shareThis antibiotic will ruin you with your friends and family. It’s getting through to people. It’s informing people. It’s connecting people.

Thank you, Amy, for sharing your journey and your story, and for doing it in a way that has resonated with so many people!

This post has done more to get the word out about the dangers of fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, Floxin/ofloxacin, and a few others) than 90% of the other posts, media stories, etc. that have been produced. It has gone viral. It has gone so viral that people are writing about it going viral, including WOMAN SAYS FLOUROQUINOLONES ANTIBIOTICS ‘WILL RUIN YOU,’ GETS 40K FACEBOOK LIKES on Inquistr.com (which, I believe is part of Buzzfeed), and, obviously, this post.

Viral posts aren’t something that happens every day, so, CONGRATULATIONS, Amy! Most importantly, her viral post, This antibiotic will ruin you, is increasing awareness about fluoroquinolone toxicity.

This antibiotic will ruin you has more than 1,000 comments on it – many of which are from fellow “floxies.” Amy has stated (on facebook) that she wants to respond to all of them, but that she’s drowning in the volume of comments. Can you, my friends in the “floxie” community, who are experts in fluoroquinolone toxicity, please help her? Please take some time to respond to some of the people who have commented on This antibiotic will ruin you. Your help will be appreciated!

The viral nature of the post has given us a window of opportunity to inform people about fluoroquinolone toxicity, and to support those who are going through it who didn’t realize that there is a support network available. Any help that you can provide in further spreading the post, and helping to answer comments on the post, will help. Thank you!