Fluoroquinolone Toxicity Article – Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications

I’m so excited to share this article, “Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications” by Krzysztof Michalak, Aleksandra Sobolewska-Wlodarczyk, Marcin Włodarczyk, Justyna Sobolewska, Piotr Woźniak, and Bogusław Sobolewski, with you! It is the first article of its kind that I’ve seen. While there are thousands of articles about fluoroquinolones, many of which focus on the damaging effects of fluoroquinolones, and many case-studies that note the adverse-effects of fluoroquinolones (hundreds of articles about fluoroquinolones are linked HERE), this is the first article that acknowledges that fluoroquinolone toxicity (referred to as both Fluoroquinolone Associated Disability (FQAD) and fluoroquinolone toxicity throughout the article) is a disabling syndrome, that also goes over the mechanisms by which fluoroquinolones can cause fluoroquinolone toxicity/FQAD, and even gives recommendations on how to treat fluoroquinolone toxicity/FQAD (while also acknowledging that there are no cures or verified treatments). The article even calls for more extensive research to be done into fluoroquinolone toxicity, and the various mechanisms through which fluoroquinolones hurt people.

It is an enlightening article, and I encourage you to print it out and give it to your doctors, family members, and anyone else who is interested in what fluoroquinolones do and how they hurt people. In this post, I’m going to go over some highlights from the article, but I recommend that you read it yourself (you can access it through THIS LINK, after clicking on the “provisional pdf” link).

The first paragraph of the abstract to the article states:

“Long term Fluoroquinolone Associated Disability (FQAD) after fluoroquinolone (FQ) antibiotic therapy appears in recent years a significant medical and social problem, because patients suffer for many years after prescribed antimicrobial FQ-treatment from tiredness, concentration problems, neuropathies, tendinopathies and other symptoms. The knowledge about the molecular activity of FQs in the cells remains unclear in many details. The effective treatment of this chronic state remains difficult and not effective. The current paper reviews the pathobiochemical properties of FQs, hints the directions for further research and reviews the research concerning the proposed treatment of patients.”

To see that in writing, in an academic article, is incredibly validating.

Adverse Effects of Fluoroquinolones

Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications, goes over the documented effects of fluoroquinolones. For tendinopathies and tendon ruptures, researchers have found that:

“FQs are associated with an increased risk of tendinitis and tendon rupture. This risk is further increased in those over age 60, in kidney, heart, and lung transplant recipients, and with use of concomitant steroid therapy.”

Fluoroquinolones cause neurotoxicity, as well as central and peripheral nervous system ailments:

“Taking FQs is associated with their neurotoxicity, as well [5-8]. The main symptoms being correlated to FQ treatment include insomnia, restlessness, and rarely, seizure, convulsions, and psychosis [9-11]. Many reports point to chronic persistent peripheral neuropathy to be generated by FQs [12-18]. Cohen et al. [19] showed that a possible association between FQ and severe, long-term adverse effects involving the peripheral nervous system as well as other organ systems are observed.

Fluoroquinolones also cause cardiotoxicity and an elongation of the QT interval, as well as hepatotoxicity and nephrotoxicity. Fluoroquinolone use has even been linked to type-2 diabetes onset.

Fluoroquinolone toxicity / FQAD is a multi-symptom, chronic illness that affects all body systems. Fluoroquinolones deleteriously affect every muscle, tendon, ligament, nerve, and even bone, in the body. They damage every cell in the body.

Fluoroquinolone Damage Mechanisms

Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications, notes the various mechanisms by which fluoroquinolones cause cellular (mitochondrial) damage, including oxidative stress, and the downstream effects of oxidative stress, including disruptions in the mitochondrial Permeability Transition Pore (PTP) (and the article authors state, “The influence of FQs on the detailed regulation of PTP is the urgent topic for further research.”), Calcium and magnesium homeostasis, lowered ATP production, and more.

Here is a diagram of the mechanisms of fluoroquinolone toxicity (published in the article):

Figure 2. The main ways of FQ toxicity. The positive regulatory loops magnifying the toxicity of FQs are marked with ‘+’. The ‘?’ signs denote the possible but not confirmed effects of FQ toxicity.

The article also notes the epigenetic effects of fluoroquinolones and oxidative stress:

“Beside OS (oxidative stress), epigenetic effects of FQs are of high importance, as well. The epigenetic effects may depend on the methylation of DNA and/or histones, however, ROS contribute also to epigenetic changes [42]. Some authors point also to the similarity of bacterial and mitochondrial DNA, both existing in circular super-twisted helices and gyrase-like enzymes being postulated to be responsible for the organization of mitochondrial DNA, suggesting the possible direct effect of FQs to mitochondrial DNA leading to the disturbed mitochondria regeneration and division [43, 44]. The changes in the cytoskeleton were observed also after FQ treatment [45] and cytoskeleton has been demonstrated to be strictly connected with energy dissipation and organization in mitochondria [46-49].”

Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications, also notes that fluoroquinolones chelate various minerals and metals. The article notes that, “Seedher’s results indicate that chelation formation with bivalent metals can cause significant alterations in the human serum-FQ binding affinity.” The article also describes how fluoroquinolones chelate iron, zinc, magnesium, and other minerals, and how this chelation can have enzymatic and even epigenetic adverse effects.

Fluoroquinolones are GABA antagonists, and the effects of fluoroquinolones are similar to those of benzodiazepine withdrawal. The authors of Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications, describe a potential mechanism through which GABA is depleted by fluoroquinolones:

“One of the proteins which can support PTP opening is Translator Protein (TSPO), called also peripheral-type benzodiazepine receptor or isoquinoline binding protein. TSPO is predominantly located on the surface of the mitochondria where it is postulated to physically associate with VDAC-ANT. It has been suggested that TSPO may activate PTP opening, causing ∆Ψm reduction and leading to apoptosis [80, 81]. Some authors suggest that epileptogenic activity of FQs possibly relates to GABA-like structure of some FQs which may allow them to act as GABA antagonists [82, 83]. Since TSPO is also a benzodiazepine receptor, similar interaction may maybe also take place between FQs and TSPO leading to opening PTP.”

I have always wondered how GABA inhibition is connected to mitochondrial destruction. The article excerpt above answers that question for me.

Fluoroquinolones can lead to chronic illness and permanent disability, which has led many people to question whether or not they remain in the body for an extended period of time (or, if they do damage while they’re in the body that continues long after the drug has left the body). The authors of Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications note that:

“The other important feature of FQs has been presented by V.T. Andrioleet al. [55]. Namely, they estimated the minimum solubility of FQs in neutral pH. They pointed that this class of molecules is characterized by very high melting point, generally >200°C, which indicates that the crystal forms are very stable. All these FQ features strongly support the thesis that FQs can survive in the cell for a long time contributing to chronic, long-term adverse reaction in patients treated with FQs. The question, to what extent takes this phenomenon place and if it contributes to chronic symptoms of FQAD, remains unclear.”

It is acknowledged throughout the article that it is unknown whether or not fluoroquinolones stay in the body for an extended period of time. It is possible, through the mechanism noted above, but no hypotheses about fluoroquinolones remaining in the body after they “should” have been metabolized and fully excreted, have been explored. It’s both possible that they remain in cells, and that they don’t – no one really knows.

The article authors repeatedly call for additional research into the various mechanisms by which fluoroquinolones lead to pain, disability, and chronic illness:

“Summing up, the number of enzymes possessing reduced activity due to their ion-cofactor chelation is probably long and it is the important topic for further research. The separate problem consists the chronicity of ion-chelation by FQs. The presented research does not describe the chronic state of FQAD but the phenomena taking place during FQ application. It must be analyzed, to which degree persistent ion chelation takes place at FQAD patients.”

Fluoroquinolone Toxicity Treatment

Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications is the first article I’ve seen that discusses the treatment of fluoroquinolone toxicity as a multi-symptom, chronic illness. The authors note that the first step in approaching a treatment is to discover why fluoroquinolones are causing chronic illness in the first place. Effective treatment, of course, depends on effective identification of the problem. With that noted, the article authors have enough knowledge to make a few suggestions:

“Until detailed knowledge concerning FQ toxicity would be recognized, the following directions in supporting FQAD patients are proposed according to the known and probable mechanisms of FQ toxicity: A. reduction of the oxidative stress; B. restoring reduced mitochondrial potential ∆Ψm; C. supplementation of uni- and bivalent cations that are chelated by FQs;D. supporting the mitochondrial replication in the cell – pulling the more destroyed to apoptosis and proliferation of the more healthy ones; E. removing FQs permanently accumulated in the cells (if this phenomenon takes place); F. regulating the disturbed epigenetics and enzyme activities”

The article authors note that antioxidant supplementation is a broad topic and that fixing the damage done by fluoroquinolones and oxidative stress is not as simple as just ingesting an antioxidant pill. However, antioxidant supplements that specifically target the mitochondria have shown some promising results:

“The antioxidants which enter easily the mitochondria are the most interesting ones. Lowes et al. [79] shows that the mitochondria targeted antioxidant MitoQ protects against fluoroquinolone-induced oxidative stress and mitochondrial membrane damage in human Achilles tendon cells. In cells treated with MitoQ the oxidative stress was lower and mitochondrial membrane potential was maintained.”

Other antioxidants have also had promising results in repairing fluoroquinolone treated cells. Some of the antioxidants with promising results include N-acetylcysteine, resveratrol, as well as Vitamins C and E. Supplementation of the trace minerals that are important cofactors for antioxidants is also important.

Conclusion

I greatly appreciate the authors of Treatment of the Fluoroquinolone Associated Disability – the pathobiochemical implications. They approach fluoroquinolone toxicity/FQAD as a complex and multifaceted illness. It IS a complex and multifaceted illness, and it is refreshing to read an article that doesn’t over-simplify or downplay the illness. I also appreciate the exploration of what is currently known about fluoroquinolone toxicity/FQAD, and the assertions that more research into fluoroquinolone toxicity is needed (it is!). I think that everyone who is going through fluoroquinolone toxicity/FQAD should read it, and share it as widely as possible.

 

 

 

Floxie Hope Podcast Episode 23 – Tara

Tara shared her journey through Levaquin-induced fluoroquinolone toxicity in Episode 23 of The Floxie Hope Podcast. Please check it out!

http://www.floxiehopepodcast.com/episode-023-tara/

and

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

You can also read more about Tara’s journey in her story:

https://floxiehope.com/taras-story-healing-from-levaquin-effects/

Tara has noted several times that she was not as far along in her journey as she thought she was when she wrote her story. Please listen to the podcast for more information about Tara’s journey. It is not a repeat of her story above.

Also, here is a different podcast that she did with her doctor:

https://floxiehope.com/2016/03/12/true-health-made-simple-podcast-featuring-tara/

Tara gives a wealth of information about her journey, and how complete avoidance of fluoride, along with various homeopathic methods, supplements, and other things, have helped her through the last two years.

Also, here are some notes and resources from Tara to accompany the information she gives in the podcast:

“What I’m told by fluoride experts is that it matters how much fluoride was already accumulated in your system if you get fluoride poisoned or if you are already sensitive to it by genetics or be because of other chemicals or stressors. Also, whether or not a person becomes hypersensitive does not seem to correlate with how badly they are injured. Ex: People who are hurt much worse than me, still may not become hypersensitive. The spectrum of sensitivity may not have anything to do with the amount of injury from what I can tell through research or peoples’ stories.”

“Also, Im not sure if I was clear about the Fluoride Poisoning symptoms – a person does not usually “feel” anything after ingesting fluoride or coming in contact with fluoride – only a hypersensitive person like myself, which is rare -most people who are poisoned because of fluoride just develop symptoms/diseases/disorders due to the enzymes, tissues, and structures that are poisoned. Most people discover they are poisoned from fluoride by getting completely off of it and symptoms get better (damage has to be repaired over time, some damage is not repairable for all people – but there is always hope of better).”

“Coffee – I forgot to mention this most important topic! 🙂 I was not able to drink anything caffeinated – not even a sip – for 20 months – using the SCIO to heal neurotransmitters (Adenosine is neurotransmitter associated with caffeine receptor site – also used SCIO to heal neurotransmitters in general helped immensely, to heal nerves, healing mitochondria DNA, food allergies, and attempting to desensitize from fluoride).

I am more than happy to report I can now drink a small cup of Bulletproof coffee (free of mold), and put Brain Octane (distilled coconut oil  – helps mitochondria for brain energy), butter (also good for brain), and when my fluoride is low enough, I can handle also putting in the Collagelatin powder in the coffee (good way to replace collagen and gelatin) for me. This is all mixed in a food processor together to combine – according to his book, there is a scientific reason why stirring doesn’t have same effects so needs to be blended.  I really like the taste and that it’s mold free. The founder of Bulletproof used to have Chronic Fatigue Syndrome, mold allergies, I think also Lyme, etc – so his story is good to read for inspiration – it brought him to a lot of research on mitochondria and health and building this very successful company.
bulletproof.com
(This is also the coffee I use for coffee enemas – it does matter that the coffee is pesticide and toxin free as possible – helped with small intestinal bacteria overgrowth SIBO)”

Resources:

Homeopathy – company name White Dove – Vitamin C, Bone Support, Pitui Liquitrophic, Fem Liquitrophic (I get these from my chiropractor’s office)
Solutions 4 supplements (chiropractor’s office)
MitoQ – mitoq.com
Pelican brimac bone char filtration system to remove fluoride – https://www.pelicanwater.com/whole-house-fluoride-filters
Allerphase (allergy/asthma herbal supplement – https://www.tangoherbs.com/allerphase60.html (side note: My son, 10-years-old, was able to get off his allergy and asthma medications – he has been on them since age 3, with the addition of Allerphase and MSM (from mercola.com), as well as getting off dairy/gluten and switching to an organic diet)
Harmless Harvest Coconut Water from Whole Foods (all coconut water is not made equal – some are highly processed – good idea to do some research – this is the one I use)
Infrared sauna – http://www.sunlighten.com/
Hyperbaric Oxygen Chamber Treatment – http://www.oxygenunderpressure.com/ – This is the HBOT Institute I went to – it’s a stand alone chamber by the Kansas City, MO airport – people from all over the United States come here for treatment – sessions were $125-$175 per session, 40 sessions is what was recommended. Expensive but worth getting my brain back.
Books:
Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis by Dr Sarah Myhill
Eat Dirt by Dr. Josh Axe –
The Thyroid Connection by Dr. Amy Myers
The Wahl’s Protocol by Dr. Terry Wahls
The Devil’s Poison: How Fluoride is Killing You by Dean Murphy, DDS
Letting Go by Dr. David Hawkins
The Fluoride Toxicity Research Collaborative – http://www.slweb.org/ftrcfluoroquinolone.html
The Truth About Water Fluoridation by Charles Eliot Perkins (1952)
SpectraCell test – for minerals/vitamins/antioxidants/etc – also get test for iron and copper
Dr. David Gulledge, chiropractor for homeopathy, SCIO
Supplements suggested by the Fluoride Toxicity Research Collaborative (FTRC) for fluoride/fluoroquinolone toxicity (they lab tested to find good/cheap brands):
Calcium – solutions 4 brand or FTRC said Standard Process (can get from a chiropractor or naturopath) – fluoride binds to calcium and leaves the body in large quantities
Vitamin C with flavanoids- detoxes fluoride – they said Trader Joes brand with the lemon flavanoids. I do better with homeopath Vitamin C.
B-vitamins – fluoride disrupts synthesis of B-vitamins – (FTRC said Trader Joes brand)
Magnesium – fluoride chelates this mineral as well (FTRC said Kal brand – found at whole foods is good). I use Epsom Salt. If I wasn’t as sensitive to fluoride, I would choose Ancient Minerals magnesium lotion – loved it.
This article was sent to me by my chiropractor- it’s is by Dr. Jack Kruse – about being floxed and what to do about it – good information on staying away from EMFs, fluoride, etc. (I am very sensitive to EMFs since being floxed/fluoride poisoned)
Blue-blocking glasses I use to watch TV, look at my phone or computer – needed since being fluoride poisoned
Thank you for listening!

 

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.

***

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

***

 

 

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.