Reluctantly Going to the Doctor

After getting floxed I developed a significant amount of skepticism toward Western Medicine. I realized the damage that Western Medicine, especially pharmaceuticals, can do, and I stopped believing that doctors can fix many issues. I learned that Western Medicine is really lousy at dealing with multi-symptom chronic illnesses of all types–including the ones that are recognized (like autoimmune diseases)–but especially the ones that are not recognized (like fluoroquinolone toxicity) or ill-defined (like ME/CFS, fibromyalgia, etc.). I saw that there is very little that can be done to help people who have suffered from iatrogenic illness, and that often (though not always, of course) when Western Medicine doctors encounter a patient who has been hurt by a pharmaceutical or medical procedure their response is hostile or ignorant.

With that knowledge, I proceeded to tell myself that I was better off without Western Medicine. Despite my insurer’s pleas, I refused to sign up with a primary care physician (out of laziness and inertia as much as fear and adversity) and I told myself that I was healthier and happier without getting poked, prodded, and possibly poisoned by doctors. For the most part, my avoidance of the Western Medical system has been serving me fine. I have been healthy and happy for many years.

However, I recently had an issue that needed to be fixed by a Western Medicine doctor – or, at least the tools of a Western Medicine doctor. I needed a minor surgery. A scalpel and Novocain were necessary to fix my issue (an issue that is somewhat embarrassing, has nothing to do with fluoroquinolone toxicity, and that no one wants to envision, so I’m going to do my best to get through this post without saying exactly what it was). No diet changes would cure me, nor could acupuncture, nor could exercises, or anything else other than a scalpel (the Novocain wasn’t strictly necessary, but it sure made getting cut easier for everyone involved). So, I went to a surgery center, got my minor surgery, and am on my way to being healed. The doctor who fixed my issue was good. He was kind, thoughtful, and he did what he needed to do to fix my issue in as quick and painless a way as possible. I am grateful to him for what he did, and I’m glad that the technology to quickly and easily fix my issue was available.

Western Medicine is really good at fixing well-defined problems that involve scalpels and other cutting tools. Western Medicine put me back together.

About a week after I got my issue fixed, my mom fell and broke her hip. She needed a partial hip replacement and she got one. It’s still a recent development, and it’s TBD how well she was put back together, but, my point is that Western Medicine doctors are good at dealing with broken bones (and pus pockets). They also have good tools for numbing people and knocking them out. The painkillers that they have are also quite effective (though not without consequence). I’m hopeful, actually fairly confident, that the doctors did a good job putting my mom back together, and that she’ll recover well.

I wish that Western Medicine was as good with multi-symptom, multi-system, complex illnesses as it is with broken bones, pus pockets, and other issues that can be fixed with surgery. I wish that fixing gut microbiome dysbiosis was as common and easy as fixing a broken bone. I wish that hormonal imbalances were as easy to detect and cure as an abscess. I wish that adverse drug reactions were easy to detect, and that the promise in all the commercials of “see your doctor if xyz occurs” resulted in a doctor who knew how to treat and cure adverse drug reactions. But Western Medicine isn’t good with multi-symptom, multi-system, chronic illnesses – it just isn’t.

But they are good with broken bones and surgeries, and I am very, very, very thankful that I got my issue taken care of, and that my mom got a surgery to put her hip back together.

Western Medicine has its place. And as much as I’d like to avoid doctors, I’m going to go to them when necessary. I’m guessing that you will too. I really wish that they were better at treating fluoroquinolone toxicity and other similar issues – or even better at treating the symptoms of fluoroquinolone toxicity. Maybe someday.

*****

 

Deciding Which Treatments to Try

The following is a guest post from Stephanie. If you are interested in writing a guest post for FloxieHope.com, please let me know

*****

I really get bombarded all the time with, “go get stem cells how could you not?” I get so anxiety ridden from it. I know people mean well but it’s so hard on me. It feels like harassment and not love at certain points–like they can’t handle me being sick so I have to heal for them to be okay.

I just want people to know that whatever they do to heal is their own decision.

I’m constantly deciding–how much do I want to be tested on, and what treatments do I want to try?

I’ve been floxed for almost five years and it’s a 5 steps forward and 4 steps backwards dance where I hold onto the one step forward as best I can–because it’s better than the times where it’s 6 steps backwards and I fight just to get back to where I was.

The crazy part is that it all becomes a matter of how much I want to be tested and treated, AND how much I want to pay for it.

There still isn’t enough data to answer one simple question: Will this procedure help me or hurt me?

Because these side effects feel like a bomb went off inside my body that made things crazy, it feels like it’s impossible for any doctor–western or natural–to give me a straight answer of, Will this treatment help or hurt?

People can list out what helps but no one can know for each person. How I look at it is we are all being tested on to get more data and to pay for it.

So, I constantly have to weigh out, do I want to risk what I have for an unknown promise of healing?

That carrot is so tempting and so hard to answer.

For me, I weigh everything on what happens if it goes wrong how much will it mess up my life. How much can I afford this to mess up things?

My husband has medical issues too and he needs to be made to take care of things too.

So, it’s a dance that is never ending.

When people ask me why don’t I try this or that it’s because I don’t like to be poked and prodded and tested like a guinea pig.

I have to feel like the odds are somehow going to be in my favor because I’ve seen various experimental treatments make people so much worse, and I often think that it’s not worth the risk.

It’s easy to talk when it’s not your life and you are not the test bunny.

Why we have to pay for everything is beyond me.

Why we have to constantly be told yes these are side effects and you get to pay to maybe get your health back is beyond me.

So, for anyone out there that is pressuring someone like me to try something, please understand it’s really easy when you are not the one being poked, prodded, and tested–when it’s not your body and your life that may come crashing down if the treatment doesn’t work as-anticipated.

It’s not easy to pick what to do and how much you are willing to spend to go through treatments that haven’t been proven to work for everyone, much less everyone.

*****

JD Scott Speaks Out About Fluoroquinolone Toxicity

JD Scott, an actor and host of several HGTV shows including Great American Country, HGTV.com’s behind the scenes content for the hit series Brother Vs. Brother, Property Brothers: At Home, Brothers Take New Orleans, radio talk show Off Topic with the Scott Brothers and more, recently posted a health update to his Instagram and Facebook pages that notes that he has been struggling with fluoroquinolone toxicity. His post states:

Health Update:

It occurred to me tonight that I hadn’t actually given you an update since first announcing my illness. On the positive side, I’m still feeling better than I did last year or even the beginning of this one.

What we know so far thanks to Dr. Jacobson’s testing is:

1. I had a bad GI infection which has been fixed. (This was just before that original video)

2. Discovered through followers comments that I was exposed to and may have been suffering from fluoroquinolone toxicity (also called “Getting Floxed”). This would account for many of my symptoms and the timing is dead on. P.S. – Avoid ever taking any antibiotics that have “flox” in the name if you can.

3. Also found out last week that I have acute mercury poisoning. My levels are so high the health department got involved. We don’t know at this point how it happened but I am being treated for it and that would explain the some of the issues I’ve been having as well.

So at the end of the day, we have a lot more clarity on what was going on and how to tackle it. I’ve stuck to the diet which limits (almost to zero) gluten, sugar, soy and dairy. I have so many other things I have to take daily for this treatment but I am so grateful to finally have some real answers and direction.

I want to take a moment as well to talk about something important. We found out recently that someone we know very well didn’t believe I was actually sick. All I can say to that is “why”? How can you dare to think you know what someone is going through on the inside? What possible benefit do I get to pretending I’m fighting off this horrible illness and experience? It costs me most of what I have to treat it. For attention? I already had my presence on social media except now it’s harder for me to create content. I miss out on nearly everything that is fun and exciting to me normally. I have to explain myself over and over and over. Every minute of my day is timed out for medications, supplements and specific meals. So for any person out there who thinks someone might be faking a long term sickness (hidden illness), look deep within yourself and really ask why. My life was so wonderful before this began and all I want is to get back to that place.

Once again, I need to thank my functional doctor, Scott Jacobson with Wishing Wellness Medical who is doing amazing things for me but also the fans who helped more than they can know. I literally got some answers from your experiences which I can now help pass on to those still struggling to find a diagnosis. And most of all, to my amazing partner, Annalee Belle who powers through everything to get me better.

JD and his partner Annalee made this video describing his illness –

Annalee also posted this video about how difficult it is to have a loved-one go through a mysterious illness:

My heart goes out to both JD and Annalee. What they are going through is painful and difficult beyond description.

I’m glad that they realize the connection between fluoroquinolones and JDs illness. Hopefully it helps them to know that there is a community of “floxies” and that they are not alone in what they are going through.

It sounds like they have found a good functional medicine doctor who is helping JD to heal. I wish him all the best with his healing journey. I hope that he recovers fully quickly.

I’m glad that JD and Annalee are speaking out about what they are going through. It’s often painful, and sometimes embarrassing and difficult, to talk about mysterious illness and iatrogenic illnesses. People often don’t believe those that are suffering. Famous people aren’t immune from the suffering caused by fluoroquinolones or the disbelief that accompanies a strange illness like fluoroquinolone toxicity. In speaking out about their experience they are helping to spread the word about how dangerous and destructive fluoroquinolone antibiotics can be. Their advocacy is appreciated!

JD mentioned in his health update post that he is also suffering from mercury toxicity. Several “floxies” have noted that their mercury levels were high post-flox, and in the post “Fluoroquinolones and Mercury Poisoning” I go over some of the potential connections between fluoroquinolone toxicity and mercury poisoning, and how fluoroquinolones may trigger mercury release and poisoning.

Thank you to all in the “floxie” community that have reached out to JD and Annalee. I’m sure that they have learned a significant amount about fluoroquinolone toxicity from you.

I hope for a speedy recovery for JD. Fluoroquinolone toxicity is horrifying, for sure. I hope that he finds healing.

*****

A Journey Through Pharmaceutical Induced Illness

The following post was written in 2013 and published on Collective-Evolution. It is still, six years later, my favorite post. It is my heart and soul. It lays bare how lost and devastated I felt after getting floxed by ciprofloxacin. It describes how I felt being knocked down, and how it felt to heal and get stronger.

This post resonated with many people when it was published. In just a couple days it was shared on Facebook more than 1,000 times. I was amazed and flattered that so many people cared about my journey enough to share my story. 

Because of Facebook’s rules, Collective-Evolution posts don’t have the reach that they did back in 2013. I’m re-posting here on Floxie Hope to revive this post. As I said, it’s my favorite. I hope that it resonates with, and helps, you.

*****

When I realized that Cipro was the cause of my body going completely hay-wire (I didn’t know immediately because my reaction was delayed), and I saw stories on the internet of people getting worse and worse indefinitely, and/or living with pain and disability caused by fluoroquinolones, I thought that I had accidentally killed myself. I thought of writing letters to my family and friends to say goodbye, to let them know that I was gone and that I was so, so, so sorry that I had taken those pills.

In some ways, even though I survived, obviously, I think that I should have written those letters (even though they would have scared the crap out of my loved ones and probably gotten me locked in a psych ward). Because I am different now. The old Lisa is gone. I certainly didn’t die in the physical sense, but who I was changed in an instant, with those 6 pills.

Before I got sick, my identity was formed by what I did, thought and felt. I was active and athletic. In the summer of 2010 I hiked the entire 500 mile Colorado Trail. I was a gym-rat. I’d get up at 5:30 so that I could hit the gym before work. I was trying out CrossFit gyms just weeks before I took Cipro. I took pride in being strong; in being healthy, active and fit. My appetites in all areas was larger than most. I loved food and I could pack it away (only keeping my weight in check by being as into exercise as I was into food). I liked to drink and I was good at it. I liked sex and, well, I dunno, I’ll tell you who to ask if you care. :p I had strong opinions on politics and religion and would express them willingly. I liked to travel and I was proud of my travels all over the world – I have seen and done some interesting stuff. I was a voracious reader as a kid but had slowed down a bit as an adult, but I still read The New Yorker regularly. I considered myself to be smart. I considered myself to be a good conversationalist.

All of that went away while I was sick. I could barely walk, I certainly couldn’t go to the gym, and CrossFit is a recipe for torn tendons for a Floxie. I was weak. I lost my energy. Strong is not something anyone would call me. I stopped eating and didn’t care about food in the least – it actually scared me a bit. Sex was approximately the last thing on my mind and I was scared of it too – it can lead to urinary tract infections and urinary tract infections can lead to antibiotics, and that chain reaction had gotten me into the rotten place where I was. My ability to handle alcohol was diminished. Even if I wanted to drink, and I didn’t, I couldn’t drink much and it wasn’t fun any more. I lost my reading comprehension. I lost my memory. I lost my capacity to do many mental tasks, so I couldn’t consider myself to be smart any more. I felt anxious in social situations and I couldn’t seem to find the words to communicate or connect with people, so I certainly wasn’t a good conversationalist.

All of the things that I thought made me who I was, were gone.

But I was still alive. I was still breathing. I wasn’t able to do the things that I thought made me me, but I was still a being, just now I was a being without any of the things that defined me.

So I fought to get those things that defined me back. I took supplement after supplement, hoping that the next one would be the cure that would bring me back. I scoured the internet, looking for the magic cure, whether it be in the form of a diet, a pill, a specialist or a method. Some of the things that I tried were helpful, some were harmful, most were neutral. None of them turned back the hands of time.

I started the spirituality sampler platter. I meditated. It helped immensely. I went to a Mindfulness Based Stress Reduction class. It helped me as well. I went to Buddhism classes and retreats. I read Marianne Williamson’s, “A Return to Love” and went to classes on A Course in Miracles (ACIM). I went to Hippy Dance Class / Rhythm Sanctuary / Hippy Church and felt the healing power of Hippies saying “OM” together and dancing to trance music. I learned about Chakras. I went to a Crystal Bowl concert.

Meditating, Buddhism classes and a course in Miracles all helped me to get to a point where mentally, emotionally and spiritually, I came to terms with my inability to turn back the hands of time. I started to accept what life had brought me. I started to feel okay about the fact that, even though I couldn’t run, I could still walk. Even though my memory and reading comprehension were shot (those scared me so much), I could still work (sort of). Even though I couldn’t do the things that I thought made me me, I could still breathe, love, feel and see beauty and depth in the moment, etc. With meditation, Buddhism and ACIM, I was able to gain patience, compassion, empathy, forgiveness, etc., mainly for myself, but for others as well.

Eventually I got to a place where I started to like who I was post-flox. Even though I wasn’t as physically strong as I used to be, I found out that I was a fighter. I learned that I’m a survivor. Cipro messed with my ability to communicate verbally, but I could still communicate through writing, and I became a writer. I found something that I feel passionate about, something to scream about, and I stopped hating that my world-view had changed and started to appreciate, in a strange way, that I now had a cause to fight for.

Certainly, this mental, emotional and spiritual healing was possible because I was healing physically. I had the benefit of my body cooperating with me and ceasing the downward spiral that it was intent on for a while. But it’s all interconnected. Our emotional, mental and spiritual health is related to our physical health, and vice versa.

Getting better physically was a long, slow process. Most of my issues were central, peripheral and autonomic nervous system issues. Nerves take a while to heal. They just do. Tendons aren’t fast healers either. But the jumps in my identity, the shifts in my psyche, were sudden. Just the other day, my appetite came back. I started to want food again. Dating has more appeal than it used to (I dated through being floxed, it just felt different). As I’ve been writing, I’ve started to feel smart again. I started to feel like ME again – like the old Lisa. Perhaps these changes (changes back) are just part of healing, part of my brain rewiring itself back to how it was for 32 years, but I prefer to think of it in more spiritual terms. As soon as I accepted and appreciated my new self, my old self returned. Life is interesting, strange and funny like that sometimes.

Even though some, maybe most of my old self traits are back, I now realize that all of those things, what I do, what I think and even what I feel, are transient. I am not the same person as I was before I got sick. But you know what? That’s okay. Because I wasn’t the same person as I was just before I got sick 2 years prior to that. We are all constantly evolving and changing. Nothing is permanent, except, perhaps the soul, love, God, whatever you want to call that constant that is in each of us. Sudden, painful changes that are thrust upon us from the outside are lousy ways to change, and they invite some resistance, but I truly did find peace, and even healing, in acceptance of the changes that came and letting go of resistance and fear.

I suppose that anyone who goes through a life-changing or traumatic event goes through what I went through when I got knocked down by Cipro. When you lose your health, your job, a loved one, etc., whenever something changes for the worse in a way that can’t be reversed, there is the tendency to want to claw back to where you were before the trauma happened, because where you were was good and where you are now is bad. It’s natural. But it never works. It’s impossible to turn back time. You can only move on. Part of moving on is acceptance of where you’re at. Acceptance does not mean that what happened is okay in any way shape or form, it doesn’t mean that you’re complacent and it doesn’t mean that you’re going to stay where you are, it just means that you let go of the notion that you can go backward. Moving forward, from where you’re at, can be an amazing, beautiful thing. It in no way means that you stay sick, or stay where you’re at in life. It’s just as impossible to stay where you’re at as it is to move backward, but in order to move on, to go forward, I have found that acceptance of the impossibility of going back, is crucial.

So, I guess that my closing message to anyone who is struggling with the loss of their former self, is to breathe. Cry and grieve for the parts of yourself that have been brutally taken away from you. Then, once you are done with the grief, know that you can’t go backward, accept that you can’t turn back time, and find some ways to move on, to find peace, happiness and healing. It worked for me. I will hope and pray that it will work for you.

******

Floxed Friday – The Rise of Floxie Education

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
 
The following was written by Michelle: 

We’re in Los Angeles, home of the entertainment industry, the most prevalent researcher on Fluoroquinolone Toxicity, nostalgia, and the doctor that floxed me. Ahhh it’s good to be home… and it’s weird to be home.

We’re shooting two very important interview subjects out here and we are very excited about what’s to come. During every interview, we learn something new that we didn’t know before. Did you know that on certain tests that doctors have to take in med school, “Cipro” is the answer to “What do you prescribe for a UTI?”

That was the case back then, but it’s not the case now.

Before diving headfirst into the entertainment industry, I was on track for medical school. I attended a pre-med summer camp for interested high school students in Boston, where I wore pant suits and attended conferences with a coffee in my hand as if I were a full-blown adult.

In college, I took classes on Animal Behavior and Microbiology, auditing Immunology by accident, and making friends along the way.

A lot of these friends, but not all, ended up making it to medical school. I was eternally grateful when they flooded me with facebook messages, skype calls, emails, and texts asking me the details about what happened to me. They were both alarmed and very curious.

Early into med school, they didn’t know much about what to expect, but a few years later, those same people reached out to me again, “just to let me know” that they had just taken an entire lesson on Fluoroquinolone Toxicity Syndrome and that they were told only to prescribe fluoroquinolones in near-death situations.

Naturally, my former academic peers shared my floxed story with their classmates and later, I had messages from other friends in nursing school who learned about FQT/FQAD.

At Chowder Fest this year, a woman made a sly remark about my “intelligence” when I propped the door to the bathroom open with a garbage can and we ended up talking about Fluoroquinolone Toxicity Syndrome just for a girl who was peeing to raise her arm over the stall and scream, “Is that CIPRO?” She learned about it in a Biology class studying for her Bachelor’s Degree.

I know it’s hard to have hope if you’ve been floxed, particularly if you’ve shown no signs of improvement, but there is hope in education. There’s hope in the future.

We hope that once finished, we can use this documentary as an educational resource for doctors and other medical professionals alike. Just talking about it seems to spark awareness and hopefully, change.

Have a great weekend!

Best,
Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

*****

Dr. Bennett identifies what the government should be doing — but isn’t — to guard against unsafe prescription drugs

Dr. Charles Bennett has been an advocate for addressing fluoroquinolone safety concerns for many years. He has has filed multiple petitions with the FDA to get them to change the warning labels for fluoroquinolones–one of the petitions is to get the FDA to add Psychiatric Adverse Events to the Levaquin/levofloxacin warning label, another is to have the FDA add “Possible Mitochondrial Toxicity” to the Levaquin Label, another requesting a black box warning to specifically identify psychiatric adverse events, including suicide and suicide-related adverse events, and likely others. These petitions have led to warning label changes, and have been featured in many of the news stories about fluoroquinolones. Dr. Bennett has also testified before the FDA about fluoroquinolone adverse reactions, and has helped many “floxies” to gain information and support. He is a wonderful advocate, and his advocacy work has increased the credibility of other advocates for fluoroquinolone toxicity awareness. He has changed how many people think of fluoroquinolones, and he has changed how fluoroquinolones are prescribed. He is making a difference.

Dr. Bennett recently wrote a wonderful editorial that was published in the LA Times entitled, “What the government should be doing — but isn’t — to guard against unsafe prescription drugs.” I highly recommend that you read and share it. He has some great ideas and insights, some of which I’m going to highlight in this post (all italicized and indented sections of this post are quotes from the editorial).

He, and his co-authors, state:

The failings are at every point in the system, starting with drug approvals. But we believe there is a particularly serious problem with the mechanisms for identifying, monitoring and disseminating information about issues with a drug after its release.

Once a drug is approved for market, the FDA relies on an informal and ineffective system of case reports and citizens’ petitions to alert it to problems and adverse events. In the past, case reports, submitted to medical journals by physicians, served as an important mechanism for detailing drug toxicity. But today, because of changes to editorial guidelines, peer-reviewed journals rarely accept such reports for publication.

Indeed. Take it from a doctor who specializes in studying adverse drug reactions that the current system of tracking and addressing concerns about adverse drug reactions is failing and ineffective. How many of the thousands (perhaps millions) of adverse reactions to fluoroquinolones have been reported to the FDA through either the adverse event reporting system, a case report, or a citizen’s petition? Unfortunately, not many. It should be noted that, “Many studies have documented that only 10%-15% of serious adverse reactions are reported” to the FDA. Though I encourage every “floxie” to report his or her adverse reaction to the FDA, a voluntary reporting system that is confusing and difficult to navigate, is not a particularly effective way of tracking the actual incidence of adverse drug reactions.

Dr. Bennett also notes that Citizen’s Petitions (many of which he has filed) are not an effective tool for tracking and evaluating post-market adverse drug reactions:

Citizens’ petitions, in which any citizen can petition the FDA to report adverse drug effects, are intended to be another check. But the petition process is cumbersome, and they are rarely granted. Of the 1,915 Citizens Petitions filed in the 12-year period between 2001 and 2013, a total of 13 were granted. Many go unanswered altogether.

The citizen’s petitions filed by Dr. Bennett, Public Citizen, and others, have been helpful advocacy tools, but, as Dr. Bennett and his co-authors point out, they have not been adequate.

Rather than continuing with the ineffective system of depending on patient and doctor reports of adverse reactions, citizen’s petitions, and case-reports to monitor and track adverse drug reactions, Dr. Bennett suggests that a new system for tracking and monitoring drugs with black-box warnings be implemented.

We propose a “black box” database or “registry,” publicly available and simple to use, that would contain extensive information about where, by whom and for what purpose black box drugs are prescribed, as well as where and in what quantities such drugs are being distributed and sold. Information about adverse side effects, culled from the myriad of government databases that now collect them, would also be consolidated in an open form and format.

In addition to the benefits of a black box database/registry noted above, a black box database/registry also has the potential to decrease usage of drugs that have black box warnings:

Is there a chance that the existence of a black box registry would decrease the use of those drugs? Possibly, and that would be a good thing. Too often black box warnings are seen as meaningless, and they are counteracted with marketing campaigns that promote off-label use. If adding more transparency, thought and effort to the prescription and sale of dangerous drugs winds up decreasing their use, that will likely be a beneficial side effect.

It would be WONDERFUL if there were a system in-place that cut down on unnecessary fluoroquinolone prescriptions. It would be WONDERFUL if there were a system in-place that adequately communicated the real risks of fluoroquinolones. I think that Dr. Bennett’s idea of creating a black box registry is an excellent way to do both those things, and it’s absolutely worth a try. The system that we currently have for tracking and addressing adverse drug reactions is woefully inadequate. Change is good – especially if it is in the direction of making people safer.

Thank you Dr. Bennett and co-authors for writing “What the government should be doing — but isn’t — to guard against unsafe prescription drugs.” Your insights and advocacy are greatly appreciated!

*****

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.

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