Weirdly a doc running a MTHFR forum referred me to a Floxie page. A floxie is someone that has taken a fluoroquinolone antibiotic (Cipro, Levaquin, Avalox, etc) and has chronic debilitating side effects from it. In my case it is chronic debilitating joint pain in my lower back and legs. Upon entering the new Facebook page, I feel like I've fallen down another rabbit hole.
I have such mixed feelings about the group. A lot of them are really really angry. Many of them are telling me that I don't have CFS/ME and that I must have been floxed prior to my diagnosis. Many of them are trying to sue the drug companies. All of them are looking for cures or at least symptom relief.
It sounds like a duplicate of every other rabbit hole I've explored: Lyme, mold, CFS, ME, autoimmune illness. Each one insists that the set of symptoms are caused by what they are advocating. I've been told that I really have Lyme, that I've been exposed to mold, etc. Now they are insisting that I got floxed before getting sick. Um no. I was on zpacks not the fluoroquinolones. Anywho... This all gets tired pretty quickly. And I tend to get combative much too easily. I hate being told by a complete stranger that I just met on the internet that I have my diagnosis all wrong. It just ticks me off. So I'm irritated with the group but reluctant to leave it since they post a LOT of useful information there. I've also found that I can give some useful info regarding diet and what has worked for me as a CFS/ME patient. I like helping people. But I also find that they are clinging and desperate. They keep asking me for the list of supplements that I take. I keep refusing since it was based on genetic and blood testing so it may not be the right thing for them. Again irritating. I want to help but these guys are so sick and so helpless and I'm not a doctor. Many of them just want a list without getting the testing done and it just isn't that simple. Sigh.... Enough grousing.
What strikes me as odd is that ALL of these illnesses share almost identical symptom sets. Which is part of the reason that each new forum I wander into the population insists that I've been misdiagnosed and I'm really one of them. Sweet on the one hand but very irritating on the other.
So it seems to me the basic model is that while all of these illnesses have a different trigger, tick bite, mold exposure, antibiotic use, the body craps out in an almost identical way. Somehow the mitochondria become damaged and the brain and/or CNS become inflamed. Makes me wonder if chronic Lyme is really damage from the antibiotics and/or the bugs damaging the mito. They are all way too similar to each other.
This group as with all the others have their own mythos as well. Claims that the body damage can occur months to years after exposure. Neuro damage, CNS damage in addition to the acknowledged tendon damage. Claims that the drug erodes nerve cells. And other odd things. Basically people with little science background trying to explain what is happening to their bodies. There is quite a lot of stuff on fluoroquinolones in the science literature but you have to be a microbiologist to be able to read it. No wonder the science is being buried in the mythos. Makes me very dubious to read many of the postings. I prefer to read the actual science papers.
I'll probably wander around in the Floxie rabbit hole a bit longer but wander back to the MTHFR rabbit hole soon. That hole seems to hold more answers for me than the Floxie one. Maybe they are related as well. Things that make you go "hum....".
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