Review of Through the Shadowlands

I just finished reading Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand by Julie Rehmeyer. It’s a memoir about the author’s journey through Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It’s a beautifully written, thoughtful, insightful look at ME/CFS, and how Rehmeyer got through the harrowing illness and regained her health.

Many floxies deal with horrible, intractable fatigue, and suffer from ME/CFS after getting poisoned by Cipro, Levaquin, Avelox, or other fluoroquinolones. I experienced some fatigue while going through fluoroquinolone toxicity, but I never considered myself to be afflicted with ME/CFS (my fatigue episodes passed relatively quickly–thank God). However, the bouts of fatigue I had were frightening, and going through my own “mysterious illness” gave me empathy for others dealing with under-acknowledged diseases. I became facebook friends with several people in the ME/CFS community, and I gained an even greater appreciation for the severity of ME/CFS and the strength it takes to endure it. It truly is a horrific disease, and the horror of it is only compounded by the lack of acknowledgement it receives.

I hope that Rehmeyer’s book brings attention to ME/CFS, and that people recognize how severe and devastating the disease truly is. And I hope that recognition of ME/CFS brings attention to all multi-symptom, chronic, mysterious illnesses that “can’t be reduced to tidy pathologies or a uniform set of symptoms.” These illnesses are real–they are not “just in your head,” and they are less “rare” than people would like to acknowledge. Yet these illnesses are systematically overlooked because they are too complex to form a single hypothesis around. Autoimmune diseases, neurodegenerative diseases, autonomic nervous system diseases, mitochondrial dysfunction diseases, fibromyalgia, ME/CFS, POTS, EDS, and, of course, iatrogenic diseases like fluoroquinolone toxicity, are complex and multifaceted, and they affect every part of the body and every individual differently. They’re difficult to study, but studying them is important. Ignoring them, and pretending that they don’t exist, isn’t helpful to anyone.

Some parts of Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand really resonated with me, and reminded me of my experience with fluoroquinolone toxicity. I’m going to point them out here, along with comments, with the hope that they will trigger in you some of the recognition they triggered in me.

In the epilogue, Rehmeyer states:

“Although I’ve certainly worked hard to improve my health as I have, I also want to be clear: I got lucky. I could have done everything I did and still be desperately ill. I think I get some credit for my improvement, but only some. A big part of it is simple good fortune.”

Yup. I’ve been meaning to write a post about the luck aspect of recovery for a while. Why did I recover from fluoroquinolone toxicity when others don’t? Luck. Pure, simple, unfair, ridiculous, stupid luck. I got lucky. I was able to get into a spiral of health. Early in Through the Shadowlands, Rehmeyer says that health and illness are like valleys between hills, and your state of being is like a marble (or boulder–depending on how big your metaphorical valleys are) that is trapped in that valley. It’s easy to stay in the valley–whether that be the health valley or the illness valley. It’s difficult to push yourself up a hill into the other valley. (Hopefully I’m remembering the metaphor roughly correctly–sorry if not.) I was able to get over that hill, into the valley of health, and I was able to do it without near as much suffering as others. Why? Luck. I’m not a better person, nor did I do more things correctly. I was just luckier.

In chapter 19: Moldy Science, Rehmeyer states:

“Learning all this, I felt as if my brain were quietly exploding. A scientific organization put out a statement that was contrary to science, and scientists couldn’t get it removed for 12 years! How could that happen?

And if respected organizations could sow doubt about whether mold is a significant risk factor for asthma–a link that had been observed in the very first textbook on asthma ever written, in 1698–what hope did I have that science would come to understand my weird illness?”

Science is political. You knew that, right? It’s not supposed to be, but it is, so don’t think it’s not.

Just as there have been scientists silenced about the dangers of mold for decades, there are scientists who recognized that topoisomerase interrupting drugs, like fluoroquinolones, are a very bad idea, and are quite harmful to mitochondrial and bacterial DNA. Perhaps messing with our mitochondrial and bacterial DNA and RNA replication enzymes isn’t a particularly good idea. But if a scientist was to say something as brazen as that he or she would be admonished, and maybe even punished.

Throughout Through the Shadowlands, Rehmeyer seems to struggle with her worldview. Is she a scientist who only does treatments that are backed up by placebo controlled trials, or is she a person who is willing to try anything to get better, even if it has a woo-woo component to it? If she tries the alternative treatments, can she still consider herself to be a skeptical scientist? But if science is failing her, and her fellow ME/CFS sufferers, does it deserve the credence and weight she gives it? After a significant struggle, Rehmeyer seems to settle on the approach that depends more on evidence gathered from her personal experience than evidence gathered in labs. She opens herself up to alternative treatments, and reluctantly finds that they help her. She seems to long for evidence of why they help her, and to struggle with the possibility that they are just placebos. At the end of the book, it seems that Rehmeyer stops trying to find identity in the science vs. alternative medicine paradigm, and she settles into a worldview that identifies her as a person with ME/CFS, who has overcome the disease, and who is now part of that tribe. The scientist and woo-woo tribes are less significant, what is significant is her tribe of fellow sufferers (and her family and other loved ones).

In chapter 11: An Unlikely Hypothesis, Rehmeyer writes about the facebook community of fellow ME/CFS sufferers. She states:

“My attitude toward my fellow patients had already started to soften as I had been exploring the forum more, and on Facebook, I found them endearing, and even inspiring. I saw how they turned to one another not just for advice as on the forum, but for a community and support and a social life after they’d been abandoned by so much of the world.”

I find the floxie community, largely found on facebook, to be incredibly inspiring. They are brave, thoughtful, generous, wonderful people, and I am honored to be among them. I also appreciate the other chronic illness communities, including the ME/CFS community, the POTS community, the floxie community, the other pharma-injured community, the fibromyalgia community, etc. All of these communities of people with chronic, poorly understood diseases are wonderfully supportive and strong, and they are appreciated.

Much of Through the Shadowlands felt familiar. I knew who many of the people were that Rehmeyer wrote about, even when she didn’t refer to them by name. I felt as if I was reading about the journey of a friend (or, at least a friend of a friend), and in some ways, I was. The community of people affected by mysterious, chronic, under-recognized illnesses is small, and we have many fights in common. We’re in this together–fighting for recognition, and cures. If Through the Shadowlands helps those suffering with ME/CFS to gain recognition and acknowledgement, perhaps it will hep floxies and others living with mysterious illnesses too.

I recommend that you read Through the Shadowlands. It’s a good book. It’s a well-written, insightful, thoughtful memoir, and I suspect that it will resonate with anyone suffering from a mysterious illness.

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Floxie Hope Podcast Episode 22 – Michelle

Michelle skiing post-flox and post-healing

Michelle shared her story of fluoroquinolone toxicity, and her healing journey, in episode 22 of The Floxie Hope Podcast. You can listen to it here:

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

or here:

http://www.floxiehopepodcast.com/episode-022-michelle/

Please consider subscribing to The Floxie Hope Podcast through iTunes or whatever podcast app you use. Thanks!

You can also read about her journey on her web site, https://barefootaya.com/. Here are her posts specifically about fluoroquinolone toxicity and her journey through “mysterious illness.”

The Mystery Illness: Part 1, Symptoms

The Mystery Illness: Part 2, Finding “The Cure”

The Mystery Illness: Part 3, Healing

How to Take Antibiotics

Here are some things that helped her, that she mentions in the podcast:

Genova’s Organix Comprehensive Profile test (the mitochondria urine test)

Michelle is incredibly insightful, thoughtful, and entertaining in her episode of The Floxie Hope Podcast. Please check it out!
Thank you for sharing your journey with us, Michelle!

Books by Floxies

There are a couple of new books available on Amazon about dealing with, and making it through, fluoroquinolone toxicity. Both of the following books are written by “floxed” women, and both generously share a message of hope, perseverance, and strength through the difficult and painful journey of fluoroquinolone toxicity.

Praying Through Pliés: Living With Lupus and Surviving An Antibiotic Called Levaquin

Praying Through Pliés: Living With Lupus and Surviving An Antibiotic Called Levaquin by Rhonda “Jean” Bolton is described as follows:

“A nurse’s true and inspiring journey of living with lupus and later surviving a devastating reaction to the fluoroquinolone antibiotic, Levaquin, by weaving her faith and her love for ballet into a powerful story of transformation. Beautifully and poignantly written, the author addresses her personal loss, grief, sadness, and anger, but the prevailing message is one of hope, love, and gratitude. Included are sections on exercise, sleep, stress management, and nutrition with simple and realistic suggestions for change. This book has the potential to bring healing, hope, and joy to those dealing with chronic illness, loss, or challenges of any kind, but it is also is for anyone who desires to make positive changes in his or her life. Also written for those who suffer from adverse reactions to fluoroquinolone antibiotics and who are unheard or even discounted, this story provides support and encouragement, while adding one more voice of credibility to their pain and disabilities.”

In an email correspondence, Jean also noted that, “Early readers have said it is a powerful and inspiring story of healing and transformation. I combine faith and my love for ballet to offer others what I have learned about lifestyle changes in the areas of stress management, nutrition, sleep, stress management, and exercise, the importance of positive thinking, and the power of gratitude. My hope is that this book will bring hope and healing to others.”

Thank you so much for writing about your journey through fluoroquinolone toxicity (on top of autoimmune diseases) and for sharing it with the “floxies” of the world, Jean!

The Magnificent Story Of A Lame Author

The second highlighted new book about a woman’s journey through fluoroquinolone toxicity is The Magnificent Story Of A Lame Author by Amy Moser.

The author, Amy Moser, is also the author of the viral blog post, “This Antibiotic will Ruin You.” “This Antibiotic will Ruin You” was viewed and read MILLIONS of times, and greatly increased awareness of the dangers of fluoroquinolone antibiotics.

Amy followed up”This Antibiotic will Ruin You” withThe Magnificent Story Of A Lame Author. The Amazon description of the book states:

“When I was growing up, I pictured myself as a nurse, an olympian, an astronaut…but never handicapped. I just didn’t see that coming. I was as happy and enthusiastic to greet this new challenge, as I would be a swarm of bees. It can be very hard to accept great trial with open arms.
I might be lame, but my story isn’t. Nearly seven years ago at the age of 28, my body suddenly disintegrated underneath me. My doctors had no idea why my previously healthy body was imploding. I was a spunky young wife and mother stunned by her new circumstances. Discovering the cause offered no cure. What now? Where do I go from here?
When I’m overwhelmed by this burden, and I’m too heavy to forge ahead, the hand of God lifts me and leads me on. My journey is incredibly hard, but immeasurably blessed by God. Impossible situations give God opportunity to shine and us an opportunity to trust. Miracles wouldn’t be miracles if they were possible. You know the phrase, “When life gives you lemons…make lemonade.” I’ll give you a new one. When life throws you dung, use it as fertilizer to grow your mustard seed of faith. It may move a mountain or grant you the strength to traverse over it.
This story is about building an unconditional faith in God even during the most grueling moments of my life. I’m finding beauty and hope along a rugged path I never would have chosen for myself.”

An Amazon review of the book, from Roland, stated:

“Amy Moser has endured more pain and suffering than anyone should ever have and all because of one medication for a mild infection. Her heart for God and her iron clad faith in His goodness and mercy have kept her going for her devoted husband and her children. I have never read a stronger testimony about the power of prayer and an unwavering faith. This is a very important book because of the warning about Cipro and the other drugs in its category and how catastrophic the side effects can be. But more importantly, seeing her faith as she describes dealing with the truly awful things happening to her formerly healthy body is a gift to us all. Read this book. Learn more about the side effects of these dangerous drugs. They are horrifying. Then say a prayer for Amy Moser and all the others suffering because of these drugs.”

Both books are generously and thoughtfully written. They describe journeys of hope and faith, and they are gifts to those who read them. I hope that they help you through your journey through fluoroquinolone toxicity as well!

Are you going to heal?

People often ask me if they are going to recover from fluoroquinolone toxicity. I struggle to answer them.

The most truthful and honest answer I can give is, “I don’t know.” I truly don’t. I don’t know how anyone else’s body is going to react to this poison. I don’t know if you’re going to get worse or better. I don’t know what your timeline will be. I don’t know if you’ll go through cycles. I don’t know if you’ve hit the worst of what is going to happen and your journey is all uphill from here, or if your pain and suffering have just begun.

Fluoroquinolone toxicity is so strange and individualized. There are some people who are permanently disabled by one pill, while there are others who tolerate multiple prescriptions of fluoroquinolones with no notable effect, but with their hundredth pill a “bomb” goes off in their body. Some reactions are sudden and easily noticeable, while other people have a gradual accumulation of damage and they slowly notice that they have insomnia, anxiety, GI distress, and that they cannot tolerate foods or chemicals like they used to – those people are floxed, but they often think that they’re “just getting old.” There are some people who have delayed reactions, there are some people who have immediate reactions. Reactions range in severity from mild to severe.

Different things help different people. Some people are helped by supplements, IVs, acupuncture, chiropractic, physical therapy, special diets, etc. But other people aren’t helped by those things, and some people are even hurt by them.

Everyone is different. I don’t know whether or not you will recover. I wish I did so I could give a better answer than, “I don’t know.” I can tell you that I have recovered. I recovered fully. I can work, hike, bike, travel, sleep, eat, and function as I did before I took ciprofloxacin. Probably because of my perspective as a person who has fully recovered, I tend to believe that many, maybe most, people can recover. People send me their recovery stories, and there are many more people who I see post things about their recovery on facebook. I see people move on with their lives. It’s hard to tell from facebook posts whether or not people are healed – you can’t see pain – but you can see that people are continuing to live life and that their pain and illness don’t consume every aspect of who they are. I see healing. I know that it can happen.

I also know that not everyone recovers. It needs to be acknowledged that some people are PERMANENTLY injured by Cipro, Levaquin, Avelox, Floxin, and the generic fluoroquinolones. Some of those people are permanently disabled because of muscle wasting and tendon tears, some of them struggle with chronic and permanent pain, some develop autoimmune diseases for which there is no cure, some never gain their energy back, some have insomnia that negatively affects every aspect of their life, some have serious psychiatric issues, some people have intractable GI issues and food intolerances, etc. The people who are severely floxed, who are not going to recover, deserve acknowledgement and respect for their struggles. Severely floxed people are some of the strongest people I know. During a conversation with friend of mine who was SEVERELY floxed (she was bedbound and paralyzed for months, and it hurt for her to blink) I noted that if she had been floxed at the level that I was (a moderate reaction) she would still be running, but if I was floxed at the level that she was, I’d be dead. She is so, so, so, so strong, and she has my undying respect and admiration.

When people ask me if they are going to be okay, if they are going to recover and heal, I think that they’re often looking for reassurance. On some level, they must know that I don’t actually know whether or not they’re going to heal (I’m just a fellow floxie who happens to write on the internet), but they want to hear someone who has been through it say, “You’re going to be okay. You will heal. It will get better.” I often say that to people. I believe it too. I think that it’s true for many, maybe most, people. Our bodies really do have amazing healing abilities. There are people who are floxed at all levels who see changes in their condition, and even healing. (My friend mentioned above has made remarkable progress. She may never recover to the point where she can run again, but she is no longer bed-bound.) Health ebbs and flows. Our bodies are constantly healing, and aging, and going through good times and bad. Most importantly, I think that hope is important, and that it’s healing. Reassuring people, and telling them that they’re going to be okay, gives them hope. Telling them that I have recovered gives them hope that they too will recover. Telling them that recovery is possible helps them to get through the hard times.

Hope is really, really, important.

Acknowledging that these drugs can do permanent damage, and giving respect to the permanently injured people who are living with the damage, is important too.

I try to walk the line between giving hope and acknowledging the pain that these drugs cause. I do my best, but I’m not always successful. I believe that it is the right thing to do to reassure people when they are scared, and to give them hope when possible. I also believe that it is the right thing to do to tell the truth (that I don’t know). Sometimes those things aren’t reconcilable.

Perhaps the best answer to the question of, “Will I be okay?” is, “I don’t know, but I can tell you that I fully recovered, so I know that it’s possible.” That’s the truth. And I hope that my recovery gives all who hear about it hope that they too will recover. Hope really is important and healing. It’s vital, and I hope that I can give you hope while still acknowledging that I don’t know what the future holds for myself or anyone else.

 

 

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.

 

Fluoroquinolones and Statins: A Recipe for Rhabdomyolysis

In May, 2017, WSB-TV 2 Atlanta aired the story, “Clark Howard says near-fatal disease possibly caused by popular antibiotic,” in which the story of how Clark Howard, a popular consumer expert and host of the nationally syndicated Clark Howard Show, was hurt by a combination of ciprofloxacin (a fluoroquinolone antibiotic) and generic Lipitor (a statin). Mr. Howard had a severe and life-threatening reaction to these drugs, and he is quoted in the story as saying, “I felt like death,” and “It was a struggle to walk five steps.” Mr. Howard was admitted to the hospital where he was diagnosed with rhabdomyolysis–a condition where muscles break down rapidly, causing severe strain on the kidneys and, potentially, death.

Both fluoroquinolones alone, and fluoroquinolones combined with statins, have been documented to cause rhabdomyolysis.

Here are some articles about fluoroquinolone-induced rhabdomyolysis:

Here is a news story about Chris Dannelly, who was killed after levofloxacin-induced rhabdomyolysis:

Additionally, here are some articles about fluoroquinolone plus statin induced rhabdomyolysis:

Both fluoroquinolones and statins are known to damage mitochondria, and they are both fluorinated drugs. They are also both widely prescribed–to millions of people annually–often concurrently.

In the article “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population” a description of the basic science behind fluoroquinolone-induced muscle damage (and rhabdomyolysis) is described. The following is a quote from “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population“:

Muscle: Basic Science

Although the etiology of fluoroquinolone-associated muscle disorders has yet to be fully elucidated, evidence supports a relationship with both latent myopathic disorders and the fluorine atom in fluoroquinolones. Despite no history of myopathy, an electromyogram (EMG) performed on a 54- year old woman with apparent ofloxacin-induced rhabdomyolysis demonstrated evidence of myopathy [85]. The patient’s myalgias and muscle weakness resolved upon discontinuation of ofloxacin. It is unknown whether the myopathic findings on EMG were related to the acute rhabdomyolysis or an underlying myopathy. In another case, a 33-year-old man thought to have norfloxacin-induced rhabdomyolysis was found to be susceptible to malignant hyperthermia by in vitro contracture tests [86], which raises the question of a possible link between the 2 conditions. His clinical complaints of myalgia and weakness and laboratory abnormalities resolved 6 months after discontinuing the norfloxacin. The researchers hypothesized that a similar muscle deficit may have accounted for the patient’s susceptibility to malignant hyperthermia and rhabdomyolysis induced by fluoroquinolones. Both malignant hyperthermia and fluoroquinolone-associated muscle disorders are thought to be triggered by a fluorine-containing compound [86]. To further investigate this possible connection, the same French investigators studied muscle function in 3 patients who presented with myalgia, tendinopathy, and arthralgia associated with fluoroquinolone exposure [87]. These results were compared with 3 patients exposed to fluoroquinolones who had no adverse events and 9 subjects with no known muscle disease who had not taken fluoroquinolones. Muscle contraction and metabolism were investigated through the use of histology, in vitro contracture tests, and 31P magnetic resonance spectroscopy (31P MRS). The 3 patients with fluoroquinolone-associated myalgia and weakness displayed similar metabolic abnormalities, whereas the 3 subjects exposed to fluoroquinolones with no adverse effects displayed normal metabolic profiles. These findings led the researchers to conclude that the adverse effects recorded in the 3 patients were related to a pre-existing muscular anomaly revealed by fluoroquinolone treatment. Further support for the hypothesis that fluorine may be the trigger for fluoroquinolone associated myopathy comes from the fact that no adverse muscular events have been reported with unfluorinated quinolones. In addition, steroid myopathy is thought to occur more frequently with fluorinated steroids (ie, dexamethasone and triamcinolone) than with nonfluorinated steroids (ie, prednisone or hydrocortisone) [88-90]. The researchers recommended that any patient experiencing myalgias associated with fluoroquinolone exposure should undergo noninvasive muscle metabolic testing with 31P MRS along with a subsequent muscle biopsy for histoenzymology and contracture tests if a metabolic disorder is found.

Muscle: Clinical Manifestations

A variety of muscle syndromes have been reported in association with fluoroquinolone use, ranging from mild myalgias to life-threatening rhabdomyolysis[78,85-87,91-95]. In fact, some investigators have proposed that myalgias may be the most common adverse effect of fluoroquinolone use [78]. Symptoms, which typically consist of diffuse muscle pain with or without weakness [86,87,91] and perhaps a predilection for proximal muscle groups [85,92], appear to manifest within 1 week after initiation of fluoroquinolone treatment [94] and often resolve within 1-4 weeks after discontinuation of the medication [78,86,91,92], although symptoms that persisted up to 6 months have been reported [86]. Statins may potentiate fluoroquinolone-associated myopathy (emphasis added) [91,92]. Furthermore, an association may exist between an underlying myopathic process and the development of myalgias and/or rhabdomyolysis after fluoroquinolone exposure, as previously discussed.

It is interesting that the authors of “Musculoskeletal Complications of Fluoroquinolones: Guidelines and Precautions for Usage in the Athletic Population” attribute myalgia and rhabdomyolysis to the fluorine atom that is added to quinolones to form fluoroquinolones. The toxicity of fluorine is often overlooked by researchers and “floxies” alike, in part because of the politics associated with assertions that fluorine and fluoride are toxic (they are). As the first sentence in the quote (“Although the etiology of fluoroquinolone-associated muscle disorders has yet to be fully elucidated”) notes though, the exact mechanism through which fluoroquinolones, statins, and fluoroquinolones and statins together, cause adverse reactions is not fully known.

What is known is that fluoroquinolones, and fluoroquinolones combined with statins, can cause rhabdomyolysis, and that rhabdomyolysis can be deadly.

If you are a “floxie” that is on statins, I highly recommend that you talk to your doctor about the case reports linked above and the possibility of rhabdomyolysis and other myalgias being induced by fluoroquinolones, statins, or both.

If you have existing myalgias, including fibromyalgia, I suggest that you take the quote above to your doctor and get off of all fluorinated drugs–as they have been shown to exacerbate myalgias.

I hope that the millions of people on statins, and their doctors, recognize that fluoroquinolones should not be given to people on statins because the two drugs combined can increase the likelihood of rhabdomyolysis and other myalgias.

I’m sorry that Mr. Howard was hurt by ciprofloxacin and generic Lipitor, but hopefully the publicity that his story is getting will serve as a warning for others.

 

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