Tag Archives: acknowledgement of fluoroquinolone toxicity

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.

*****

 

Acknowledgment is Healing

We all want our life to matter—to have a purpose. We all want to be valued. We all want to be seen and acknowledged. We all want to be believed. We all want our ideas to matter. We want to be listened to and heard. We all want to be respected. We all want reassurance that we matter, that we are okay and, most of all, that we are loved—unconditionally.

All of these are human desires. Everyone wants these things.

Some people are particularly good at getting these things. They are famous. They are artists—even the ones that don’t call themselves artists.

Even people who aren’t influential to thousands of other people want to be seen, acknowledged and unconditionally loved though. It’s part of being human.

People with mysterious, invisible, poorly-understood diseases often struggle with being seen and acknowledged. They are told that their disease isn’t real. They are told that they should feel fine. They are told that they are lazy or unwilling to help themselves. They are told that doctors know more about their body than they do. They are told that they are choosing to be sick. They are told that their illness is all in their head. They are told that if they only tried ___ (a new drug, diet, exercise, belief, etc.) they would be okay, and if they’re not okay after trying those things, they must not be trying hard enough.

It is mean, and cruel, to steal acknowledgement and validation from someone. It is particularly cruel to say horrible, hurtful, unacknowledging things to someone who is sick.

Who is anyone else, even a doctor, to say that your pain isn’t real? That your suffering isn’t warranted? That, because no one knows what to do to fix you, you aren’t worth fixing? That your problems and struggles are made-up choices, as opposed to “legitimate” physical health problems?

The person who is living in their body every day is more of an expert on their pain, suffering, and their disease, than ANYONE else, no matter how much schooling that person has had.

Doctors can offer insight, advice, diagnostic tools and diagnoses; they can fix many health problems, and if they’re really good a their job, they can heal people. But it really, really, really pisses me off when doctors make people who are sick and scared feel small and unworthy by not acknowledging their pain or illness.

It makes people feel small and unloved when they hear a trusted authority figure (or anyone else) says that their symptoms are imagined, or that their disease doesn’t exist.

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Doctors aren’t the only people who fail to acknowledge the pain and suffering that is involved in mysterious, invisible illnesses. (Doctors are actually better, on average, about acknowledging pain and suffering than most people. It just happens to be more painful and damaging when they don’t acknowledge mysterious diseases because if they can’t even acknowledge the disease, then they can’t fix it, and if they can’t fix it, what is the sick person supposed to do??) There are a lot of people who seem to think that they’re experts on whether or not fibromyalgia, CFS/ME, fluoroquinolone toxicity, chemical sensitivities, mycotoxin/mold illness, vaccine injuries, chronic Lyme Disease, ADHD, benzodiazepine withdrawal, depression, anxiety, Morgellon’s, mitochondrial dysfunction, and other multi-symptom, mysterious, invisible, illnesses exist.

To anyone who would be so callous as to say to someone who is suffering that their disease doesn’t exist – Who are you to say, or even think, that? Who died and made you the expert on anyone else’s body? Who are you to say that you know ENOUGH about the intricacies of another person’s body to determine that YOU know what is going wrong with it?

It is ass-hole-ish and cruel dismiss people—to make them feel diminished and small. Don’t do that. It is the opposite of unconditional love. Acknowledge pain, suffering and mysterious illnesses. Acknowledge those who are going through enough crap without your judgement. It’s the right thing to do. Failing to do so makes you a jerk. Don’t be a jerk.

 

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Acknowledgement of Fluoroquinolone Antibiotic Toxicity

It is important to get acknowledgement from the doctors you are working with.

Though fluoroquinolone toxicity is not near as acknowledged as it should be, it’s not completely unheard of.  After all, most of the symptoms that people experience are listed on the warning labels.  Fluoroquinolone toxicity has also gotten some attention over the years, from Stephen Fried’s 1998 book, “Bitter Pills: Inside the Hazardous World of Legal Drugs,” to Nancy Edwards’ documentary, “Certain Adverse Events,” to the PBS Frontline special, “Certain Antibiotics Spur Widening Reports of Severe Side Effects,” to the dozen+ news stories about fluoroquinolone dangers done in the last month (linked to here).  Hundreds of media, blog, and peer-reviewed journal articles have also been written about the deleterious effects of fluoroquinolones (linked to here).

So, when a healthcare worker says, “I’ve never heard of reactions like that,” it makes me wonder, are they ignoring the warning labels, not paying attention to the media, or both?  (Yes, I know that my perspective is a bit biased and not everyone sees FQ toxicity everywhere, but it has been getting some genuine mainstream attention lately, and any doctor who prescribes these drugs should at least have his/her interest piqued by the stories and/or the existing journal articles.)

I suggest to everyone that they find doctors (or other health-care personnel) who, at the very least, acknowledge that fluoroquinolone toxicity is possible.  You can find a list of positively reviewed doctors here.

Fighting with your doctor for anything, much less a baseline of acknowledgement, is counterproductive to healing.  You don’t want to have that tension with the person who is supposed to be helping you.

Many Floxies have reported the relief they have felt when gaining acknowledgement of fluoroquinolone toxicity from a doctor.  In Diego’s Story, he noted that, “My doctors validating that LEVAQUIN did this to me” was one of the things that has helped him to heal.

Mike, a frequent commenter on this site, told me how great it was to hear from a doctor, “you are definitely floxed.”  And I appreciated hearing from him that his doctors told him that they read Floxie Hope.  🙂

Josh sent me this message:

“So, as I was telling you before, I had to schedule a root canal and was nervous about the procedure. When I went in to the dentists office, I filled everything out about my allergies to fluroquinolones and that I was under no circumstances to be exposed to them. Then, the doctor comes in and first thing she says is…

‘So I see you’re allergic to that poison that I would never dream of prescribing anyway.’

Can you imagine my relief? For about 5 minutes we talked about the adverse effects of quinolones and she assured me she would have never used them in the first place. As for the procedure itself, the first phase went very well (I have to get it finished in two weeks). I was given a lot of novacaine and she used eugenol (clove oil) to pack and seal the cavity temporarily and to bring down the swelling from a small infection in my tooth. I did experience a small flare (some mild muscle ache, nothing serious) for about 36-48 hours after the procedure. But 2 week out from the first phase, and 2 weeks until the second, my floxie symptoms are fine.

Please feel free to share the good news with the community that there ARE more and more medical professionals seeing things from the right perspective here! This woman is a very well respected endodontist in the Philadelphia area and she was just as adamant as I was about staying away from these drugs. Definitely encouraging news, and I felt like God really sent me her way to calm my nerves about the procedure and show that there are some doctors who know what’s up.”

It is noted regularly in The Fluoroquinolone Toxicity Group, a facebook support group for Floxies, that a doctor or other medical professional has acknowledged fluoroquinolone toxicity.  (Frustration with doctors not acknowledging fluoroquinolone toxicity is also noted often, and I suggest that everyone who experiences that try to find a new, more empathetic and educated doctor, if possible.)

Life is too short and precious to fight for the baseline of acknowledgement.

There is a lot of information about fluoroquinolone toxicity available.  Curiosity isn’t too much to ask for either.

The words, “I believe you,” are healing.  I hope that you all get that.  It’s more healing than any medication I can think of.

I’m really glad that more and more doctors are acknowledging fluoroquinolone toxicity, and how dangerous and destructive fluoroquinolones are.  To every doctor who acknowledges the pain and suffering of their patients going through fluoroquinolone toxicity, and especially to those doctors who don’t prescribe these drugs because of the devastation they bring – THANK YOU!

Acknowledgement, curiosity, knowledge, and caring will bring change.  When doctors bring those traits to their practice, they can change the lives of all of their patients.  The more doctors who see and acknowledge fluoroquinolone toxicity, and care about the patients who are suffering from it, the more quickly change will happen and the better the world will be.

 

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