Tag Archives: CFS

Prominent Activist Notes Possible Connections Between Fluoroquinolones and ME/CFS

I’m a big fan of Jennifer Brea–an activist and advocate for those with ME (Myalgic Encephalomyelitis – also known as Chronic Fatigue Syndrome or CFS), and the filmmaker behind the wonderful documentary Unrest. She is also heavily involved with the ME Action Network, “A global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome,” and a blogger on Medium. She is powerful, thoughtful, interesting, insightful, an amazing leader, and she has helped thousands (maybe millions) of people with ME to live with, and maintain hope through, a horrible and debilitating disease. She has brought understanding of the horror of ME to people in a way that is empathetic and thought provoking. She is a wonderful advocate for her community.

AND, I’m excited to tell the “floxed” community…

Fluoroquinolones are on her radar as a possible cause of connective tissue disorders that may lead to ME.

In her July 10, 2019 post, “Onset: Part III (Connections),” she notes that antibiotics are a potential cause of collagen and connective tissue disorders:

Antibiotics: doxycycline, which anecdotally some patients have benefited from, inhibits MMPs. Fluroquinolone antiobiotics, which can produce an ME/CFS-like illness, increases MMPs and in December 2018, the FDA issued a warning against its use in patients with Ehlers-Danlos Syndrome and Marfan Syndrome.”

Indeed, fluoroquinolones increase production of MMPs–a category of enzymes that are capable of degrading all kinds of extracellular matrix proteins including, but not limited to, the structural proteins of the aortic wall.

The article, “Ciprofloxacin enhances the stimulation of matrix metalloproteinase 3 expression by interleukin‐1β in human tendon‐derived cells” notes the following:

In this study, we have shown that the antibiotic ciprofloxacin, which induces tendon pain in some patients (1) and tendon pathology in rodents (3, 4), can increase MMP expression in human tendon‐derived fibroblasts. Specifically, ciprofloxacin potentiated IL‐1β–stimulated expression of MMP‐3 at both the mRNA and protein level.

Tendon pain and degeneration have been associated with an increase in the normal turnover of matrix proteins (9, 10, 12). MMP‐3 has a broad substrate specificity; it is able to degrade matrix components including type III collagen and the proteoglycans aggrecan and versican, and is capable of activating a variety of other MMPs and pro–tumor necrosis factor (11). However, its role in tendon physiology and pathology has not been clearly defined.

Our results raise the possibility that a combination of fluoroquinolone and (fluoroquinolone‐induced) inflammatory mediators might result in the inappropriate or unbalanced expression of MMPs.

Changes in expression of matrix components such as collagen and proteoglycans have also been reported in response to various fluoroquinolones.

The increase in MMP expression may not be the only way that fluoroquinolones damage and destroy connective tissues, but it’s almost certainly one way.

More information about the increase of MMP expression caused by fluoroquinolone antibiotics can be found in the post, “Fluoroquinolones Increase Expression of MMPs” as well as these links:

In a couple posts on this site, I have noted that ME/CFS caused by connective tissue disorders may be proceeded (even caused by) fluoroquinolone exposure. You can read about these theories in the posts Are Fluoroquinolones Causing Connective Tissue Disorders that are Leading to ME/CFS? and Do Fluoroquinolones Cause Cerebrospinal Fluid Leaks?

In Jen Brea’s post she note that there are many causes of collagen and connective tissue disorders, including viral infections, bacterial infections, mold, pregnancy, surgery, car accident, concussion, Ehlers-Danlos Syndrome and other connective tissue disorders, and sex hormones.

It is likely that many people who suffer from ME/CFS, as well as many “floxies,” have been exposed to several of these triggers. Personally, I was exposed to both fluoroquinolone antibiotics and changes in sex hormones (my period) when the flox bomb went off in me. I don’t think I had an actual infection, but most people also have a concurrent bacterial or viral infection when they take fluoroquinolones. I have also surmised in the past that perhaps floxies (as well as people with ME/CFS) have a yet-to-be-discovered form of Ehlers-Danlos syndrome. I also think that there are genetic predispositions to both fluoroquinolone toxicity and ME/CFS, and that the RCCX theory by Dr. Sharon Meglathery is a good place to start when looking at genetic predispositions for all sorts of mysterious illnesses. On the site https://www.rccxandillness.com/ Dr. Meglathery states:

“I believe that the RCCX Theory solves some of medicine and psychiatry’s greatest mysteries. The RCCX Theory explains the co-inheritance of a wide range of overlapping chronic medical conditions in individuals and families (EDS/hypermobility, autoimmune diseases, chronic fatiguing illness, psychiatric conditions, autism, etc.). It explains the underlying pathophysiology of chronic fatiguing illnesses with so many overlapping features (EDS-HT, CFS, Chronic Lyme Disease, Fibromyalgia, toxic mold, Epstein Barr Infection, MCAS, POTS, etc.). And finally, it reveals the gene which I believe confers a predisposition toward brilliance, gender fluidity, autistic features, and stress vulnerability, as well as the entire spectrum of psychiatric conditions (other than schizophrenia which can be co-inherited).”

Though there is significant overlap between fluoroquinolone toxicity and ME/CFS they are not the same, and there are many people suffering from ME/CFS who had other triggers set off their illness. With that said, the evidence that ME/CFS is a connective tissue disorder is mounting, and if a debilitating disease like ME/CFS is caused by disordered connective tissues, perhaps drugs that are known to cause connective tissue disorders (fluoroquinolones) shouldn’t be prescribed by the millions each year.

I appreciate that a leader like Jennifer Brea has the fluoroquinolone connection on her radar, and I hope that those in the ME/CFS community that are floxies as well are able to gain insight and support from both our communities.

I also suggest that everyone watch her wonderful film, Unrest. As a recent floxie hope commenter said, “It’s a good window of what it’s like to live with a chronic illness and I think a great example of what it’s like to have a supportive partner (her husband Omar).” Here’s the trailer:

At the risk of sounding too much like a fan-girl, I’m pretty stoked that fluoroquinolone toxicity is on Jen Brea’s radar, because I think she’s amazing. Read and watch her work, and I think you’ll agree. Much of it will likely resonate with many “floxies” as well.

*****

 

Fluoroquinolone Toxicity and Other Illnesses are not Mutually Exclusive

Fluoroquinolone toxicity and other multi-symptom, chronic, illnesses are not mutually exclusive. It’s possible to be floxed and have Lyme Disease. It’s possible to be floxed and to have Epstein Barr Virus. It’s possible to be floxed and have an autoimmune disease. It’s possible to be floxed and have mercury or lead poisoning.

Often, people have to fight for fluoroquinolone toxicity to be acknowledged. Doctors, nurses, other medical professionals, as well as skeptical loved ones, will often dismiss fluoroquinolone toxicity as ” not real” or being “all in your (the patient/loved one) head.” When they suggest that fluoroquinolone toxicity isn’t real, they often suggest that maybe you, the patient/loved one, really have some other disease such as Lyme Disease, ME/CFS, fibromyalgia, lupus, M.S., Sjogren’s Syndrome, Epstein Barr, etc. This often puts floxies on the defensive, and they fight with their doctors to say, “No, I’m not sick because of ___ recognized illness, I’m sick because of fluoroquinolone toxicity. I was fine before I took Cipro, Levaquin, or Avelox. Now I’m sick. It’s the drugs.” You, the patient, the floxie, the person whose body hurts, is right. These drugs hurt you, and anyone who dismisses the possibility that fluoroquinolones can do serious, severe, and long-lasting harm to a person is wrong and misinformed. There is a massive amount of evidence of the damage that fluoroquinolones do to people. There are several mechanisms by which fluoroquinolones can cause multi-symptom, chronic illness. The warning labels on fluoroquinolones reflect that they are dangerous drugs with serious consequences. You ARE suffering from fluoroquinolone toxicity.

With that said, you may also have Lyme Disease, or Sjogren’s, or mercury poisoning, or something else. It’s possible, and I think that examining all possibilities for acknowledgement and treatment are helpful.

Having an autoimmune disease, or Lyme, or some other more acknowledged illness, does not mean that you aren’t floxed. As I just said, There is a massive amount of evidence of the damage that fluoroquinolones do to people. There are several mechanisms by which fluoroquinolones can cause multi-symptom, chronic illness. The warning labels on fluoroquinolones reflect that they are dangerous drugs with serious consequences. Fluoroquinolones are dangerous drugs. They are hurting, and disabling, too many people.

Illnesses do not always occur one at a time–they can occur simultaneously, and they can overlap. Definitions of diseases are fuzzy too, and if you want to read about how diseases are defined by the drugs that treat them (i.e., the pharmaceutical industry), read Dr. Terry Wahls’ book, The Wahls Protocol, in which she discusses how diseases are defined and developed.

Some people have suggested that fluoroquinolones trigger other diseases. Is this possible? Maybe. In I Believe I had a Predisposition on www.fluoroquinolonethyroid.com, JMR discusses the possibility that she had a predisposition toward autoimmune thyroid issues, and that fluoroquinolones triggered the expression of that illness. People have suggested that fluoroquinolones trigger the activation/release of dormant Lyme or Epstein Barr. In Do Fluoroquinolone Antibiotics Trigger Charcot-Marie-Tooth and Other Genetic Diseases? I discuss the possibility that fluoroquinolones trigger epigenetic changes in that lead to the expression of dormant genetic diseases. In Lead Toxicity: Secondary to Hyperthyroidism, Hyperparathyroidism . . . and Fluoroquinolone Toxicity?, JMR suggests that fluoroquinolones may have triggered the release/activation of lead in her body. Similarly, in Fluoroquinolones and Mercury Poisoning, I note that fluoroquinolones may trigger the release/activation of mercury in the body through the disruption of mineral homeostasis (or maybe through keeping the liver from detoxifying the body properly). Many people have noted that there is a huge amount of overlap in symptoms between fluoroquinolone toxicity and fibromyalgia, ME/CFS, and other “mysterious” illnesses of modernity. All these connections and possibilities should be explored.

The possible connections between fluoroquinolone toxicity and other illnesses doesn’t mean that fluoroquinolone toxicity isn’t real though. It is real–it’s very real. Whenever people assert that fluoroquinolone toxicity isn’t real, and that people are really suffering from some other illness, I always go back to the beagle puppies that were made lame by fluoroquinolones, and their precursor nalidixic acid. Those puppies may have had some sort of genetic predisposition toward being hurt by fluoroquinolones, but the damage done to them wasn’t really something else. Their lameness, their pain and suffering, was from the fluoroquinolones – period.

I also go back to the mechanism of action for fluoroquinolones. Fluoroquinolones are topoisomerase interrupters. The mechanism of action for Cipro/ciprofloxacin is:

The bactericidal action of ciprofloxacin results from inhibition of the enzymes topoisomerase II (DNA gyrase) and topoisomerase IV (both Type II topoisomerases), which are required for bacterial DNA replication, transcription, repair, and recombination.

This video illustrates the mechanism of action for fluoroquinolones:

Fluoroquinolones have been shown to deplete mitochondrial DNA, and otherwise damage mitochondria.

The ARE dangerous drugs that ARE hurting people.

AND, you may have Lyme Disease, or lupus, or another illness, as well. So, get tested, and determine a course of action that treats all your symptoms and illnesses. These illnesses are not mutually exclusive, and knowing what you’re dealing with is key to understanding how to approach it. Of course, be careful with the treatments, but knowledge, and an open mind, are almost certainly helpful.

Multi-symptom, chronic illnesses are difficult to understand, and they’re even more difficult to treat. Dealing with multiple multi-symptom, chronic, mysterious illnesses is even worse. Luckily, the things that help people with fluoroquinolone toxicity are often similar to the things that help people with chronic Lyme Disease, or ME/CFS. So, please don’t feel disheartened or overwhelmed if you are facing both fluoroquinolone toxicity and another disease. Hang in there, and know that hope is helpful no matter what the ailment.

 

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