Okay, at the risk of sounding like a simple ranter, I’m dropping in a quick cautionary post to urge ALL who are hypermobile (whether you have a Hypermobility Spectrum Disorder or EDS or not, diagnosed or not) to AVOID all anti-biotics from the fluoroquinolone or “quin” family but especially Ciprofloxacin, aka “Cipro”.
Heck, I’ll change that to read everyone, hypermobile or not should probably avoid the fluoroquinolones and Cipro, period. (Levofloxacin a.k.a. Levaquin is the other major drug name in the family, but there are more, so double check.)
Why? Because we seem to be prone to an experience called “floxing” and resulting tendon rupture (and more), for which the drug now has a black box warning. I was inspired to write this after seeing someone posting about their bad experience taking Cipro in a Facebook support group for the umpteenth time just now (in 2014 originally) and experiencing these negative effects, so I felt a post was in order.
Updated to add May 26, 2022 that sadly, despite our best efforts to resist the doctor’s insistence in the ER where they diagnosed her pneumonia, my best friend was just floxed by Levaquin a week ago to our great dismay. We are devastated as she has many pre-existing and underlying conditions including undiagnosed likely classical EDS plus lipo-lymphedema making this a very serious setback, and frankly endangering her life!
I’m not a doctor, and no I do not have any scientific data to back this up yet, sorry, and I know a lot of (likely autistic B&W thinking) patients and doctors will take issue with it for that reason, but… I have several good EDS friends who HAVE been “floxed”, and one whose life was altered permanently from it. I.e, she experienced a connective tissue “onset storm” just like mine after taking just 2 pills several years ago. Uhm!!
For the record I did NOT take Cipro in 2011-12 (or any other antibiotic for that matter), leading to my onset storm – it just came out of the blue for reasons unknown besides genetics, stress, hormones and time. (My late aunt, a Catholic nun fell apart in her 40’s also we now know. I also think Dr. Sharon Meglathery’s new RCCX Theory may explain my onset nicely now.)
I haven’t taken any anti-biotics of any kind in years, as I studiously avoid them as much as possible through good nutrition and lifestyle optimized for me. I also don’t have kids, so am less exposed than many to all the bugs out there, blessedly.
Nonetheless, you can read another gentleman’s eloquent story of his experience with it here:
Trust me, I was a little skeptical at first, figuring he just had an axe to grind (which he does), so it was just going to be one giant rant saying “CIPRO IS EVIL!” which in a sense it is. But it’s very well written and his case is well laid out, such that I was convinced. Further, his floxing story also matches my “storm of onset” experience quite well also, though again, I did NOT take Cipro, so mine was likely hormonally driven.
But when my new close fellow EDS friend described virtually the same experience and we brought it up in our EDS group, several others also expressed similar experience. And more come out of the woodwork every time it is mentioned.
That said, I know someone with MCAS who can only take Cipro now because of allergies and reactions to all other antibiotics. I truly pray they never get floxed! (This is why we’re not calling for an outright ban.)
Further, as of October 2014, Dr. David Perlmutter has joined the chorus of voices urging people to avoid the fluoroquinolone family, as a recent article in the Journal of Neurology (Sept 30, 2014 vol 83 No 14) describes a study showing a possible link between this class of drugs and onset of peripheral neuropathy, a condition usually ascribed to diabetes. He talks about it here:
And fellow Ehlers-Danlos Syndrome patient and smart blogger (and fellow techie) Zyp Czyk just wrote a lengthy post about the matter including more documentation and warnings for all fluoroquinolones as of April 2015.
And I just caught this snippet (August 11, 2015) about it on America’s (functional) Pharmacist Suzy Cohen’sblog postfrom April 2015 here stating how people with this particular genetic mutation will have even more trouble than most, which combined with an underlying connective tissue disorder sort of spells disaster in my book:
Ciprofloxin
“Avoid fluoroquinolone drugs if you have a SNP in CYP1A2 (like me) because these drugs are strong inhibitors of the gene and the drug will build up quickly. Strong inhibitors of the gene reduce clearance of the offending medication which gets metabolized through that pathway. In my example the “FQ drugs” or fluoroquinolones as they are known pharmaceutically are drugs that get metabolized through this pathway CYP1A2, and if you are homozygous positive (+/+) it doesn’t work well to begin with so the FQ drugs build up, and they get toxic quickly. They have a black box warning already from the FDA for tendon ruptures. I wonder how many of those people with severe side effects from FQ drugs had a SNP for that?!
I’m trying to warn you: You don’t want to get yourself “floxed” trust me! Tendon rupture will be the least of your concerns if you get hurt from these medications. So unless you have a life-threatening infection, that only respond to an FQ drug, then I recommend you avoid ciprofloxacin, levofloxacin and the rest of the clan in that drug category. I’d avoid them anyway, but especially if you have SNPs in the cytochrome pathway.”
And most recently (May 2016), the FDA just urged increased caution in prescribing them finally, hypermobile or not here. This is huge, as they are notoriously slow to act! Of course, we hope they’ll go further someday, but this is a good start and caution.
Update 3/31/17: Just stumbled on this site also, suggesting a “New Theory of Fluoroquinolone-Associated Disability” that sort of describes EDS (and the benefits of Vit C and E for same) to a T. Unsure of source (it’s a google doc) and age, but read for yourself. (I’ve often said EDS resembles scurvy too – so no surprise Vit C helps alleviate our troubles.)
Update 7/13/18: But wait, there’s EVEN MORE! The FDA just announced another warning for the fluoroquinolone family of drugs due to their effects on…. MENTAL HEALTH! To whit:
The mental health side effects to be added to or updated across all the fluoroquinolones are:
disturbances in attention
disorientation
agitation
nervousness
memory impairment
serious disturbances in mental abilities called delirium.” (Me again: you can’t make this up!)
So, clearly the evidence is mounting. And don’t take my word for it, but I would discourage their use generally, but especially in the hypermobilepopulation, and especially in anyone with that last genetic defect named above, as I’m increasingly (albeit unscientifically) convinced we are the ones who generated the black box warning about tendon ruptures. It sort of makes sense if you consider our already faulty and hence weak connective tissues to begin with.
Rant over! To your health,
Jan (If you found this post useful, would you consider supporting me at any level one time or monthly here? TYSM!)
But wait, there’s even more…
Editors note 2/25/24: I’m re-arranging the following list to be in reverse order, from newest to oldest, so folks know what the latest news we have is right away. There is an official warning from the FDA regarding risk of aortic aneurysms or rupture for EDS and Marfans patients from December 2018 below. (Hat tip to my readers for that, thank you.)
Additional news and updates about Cipro et al since this article was first published in reverse order:
Update 3/4/19: Great news, drug maker Janssen has discontinued manufacture of Levaquin due to all of the backlash and adverse event reporting. Unfortunately this doesn’t stop the makers of generic versions, but it’s a big step in the right direction. Keep pounding the drum everyone!
Update 12/20/18: And now the FDA is warning that Cipro et al are contraindicated for patients with Marfan Syndrome or Ehlers-Danlos due to risk of aortic aneurysm or rupture per this CNN article– w00t! (Word is slowly spreading.)
Official FDA Warning <—about risk of aortic aneurysms and rupture for EDS and Marfans patients December 2018
Here are the written submissions to the same public hearing on quinolones and fluoroquinolones hosted by the EMA just above in June 2018. Really compelling stuff.
I think this caused Mast Cell Activation Syndrome and POTS in me. I got sick with bronchitis, treated with Levaquine, and got sick while taking Levaquine, and then I got sick weeks afterwards with similar symptoms to the Levaquine. I lost the entire summer dealing with multi-symptom disorders. It has been horrible! Does anyone know if there is any research suggesting a connection between Levaquine and MCAS and POTS? I would be grateful to find it…
I don’t know of anything specifically connecting the quinolones to MCAS and POTS, but considering that EDS and MCAS and POTS often play so well together in the sandbox (come together so often), it wouldn’t surprise me. I.e, it sounds like it triggered a sort of onset flare or storm for you, but MCAS and POTS were predominant for you, vs EDS for me. Also, we can have bad MCAS /MCAD reactions to any med, so that makes it harder to say in your case. I.e, one could trigger to Tylenol or any other drug/antibiotic even not in the quinolone family due to MCAD of any kind (MCAS or Mastocytosis or ?). I personally strongly consider POTS to be the natural result of lax tissues and mast cell mediators causing so much vasodilation among other things, but I’m not a doctor. Have you been checked for hypermobility yet?
I don’t understand how you can say you were skeptical and he just had an axe to grind. There are thousands of us damaged by fluoroquinolones, and nobody believes us. It’s unreal. Why in the world would we lie about that? And why should only the fact that his post was ‘well written’ make you believe him? You can’t argue with or deny the many thousands of us, and one day our voices WILL be heard.
I take everything I read with a grain of salt – as should you. It doesn’t mean I don’t believe it, but it doesn’t mean I do. I wait, and weigh what I read with evidence. After all, it’s opinion, we haven’t been able to scientifically prove it yet. But trust me, I’m now more than swayed as my article goes on to state by all the stories of floxing I read about in the Ehlers-Danlos and MCAD communities online including some good friends, so put down your sword – I’m on your side now, smile. (I went on to add several backup voices to that end, albeit again, just opinions still.)
But I do encourage being skeptical and keeping a discerning mind about any and everything you read always – allow for multiple possibilities, and wait and weigh things with your own evidence, and scientific evidence when available.
Basically, don’t believe everything you hear/read right off – even from doctors who are also just humans too after all, even if you do eventually agree with it later once you’ve gathered enough evidence. There are oodles of websites from people (patients and doctors both) with axes to grind that are much less valid, trust me. (Not about floxing, but other things/viewpoints/issues.)
And doctors can and do make mistakes, and are sometimes “married” to points of view – often quite outdated ones (like that Cipro cannot flox you, right?). In fact, that’s why we’re even having this discussion – they still think Cipro et al are safe. (Hey, they still think Hypermobile EDS is still rare too, lolol.)
That said, I’m very sorry for your clearly terrible experience from floxing. I hope you are getting some good support around it. I know there is at least one group or groups trying hard to help your voices be heard properly. I wish you much love and luck. Peace to you and thanks for adding your voice. That’s why I even wrote this post – on all your behalf. Cheers.
“these antibiotics inhibited
jumonji domain histone demethylases, TET DNA demethylases,
and collagen prolyl 4-hydroxylases, leading to accumulation of
methylated histones and DNA and inhibition of proline hydroxylation
in collagen, respectively.”
Uhm, connective tissue trouble anyone? I got your proline deficiency right here! Yes, thank you. BTW, a friend’s DC found that all of his CTD patients are deficient in… : proline, cysteine, lysine and methionine. Surprise. She tried supplementing with some amino acids for a bit but succumbed to the high levels of aluminum in the adjuvents. So switched to just Vit C shots and is doing great.
not all with CTD (connective tissue disorder) are hypermobile.
a sibling has no signs of hypermobility but had a retinal detachment after being prescribed Cipro.. and our father died of a AAA.
Which is why I wrote the very second paragraph reading:
“Heck, I’ll change that to read everyone, hypermobile or not should probably avoid the quinolones and Cipro, period. ”
Because indeed, not all are hypermobile, but everyone is affected by these drugs, and especially people with any form of CTD, hypermobile or not. I totally agree. That said, I dearly hope your family were not floxed causing the above. Hugs x
Keep up the good work. I am a practicing internist who does functional medicine. I have two siblings with EDS. They both took quinolones at some point. I told him I thought there was a connection and was searching the Internet when I ran across your blog post. All of those antibiotics should be taken off the market.
My interest is been in your bowel syndrome having written the first book for patients with the disorder back in 1989. Recently we have seen a clustering of patients who experience sudden abdominal bloating. In my 34 years of practice I have not seen anything exactly like this. Common thread-they all have been on quinolone and my theory is is is messed up their enteric nervous system. We know that quinolones can affect the peripheral nerves.
I’m certain my sister, who was a pioneer in the natural foods business and outliving most of the time in Paris. Her home is Boston. She has become an EDS Crusader and is looking to start some sort of international foundation.
Thank you to the author and the commenters. I’m turning 30, and seeing a fast decline in joint and tendon health. I was prescribed Cipro four years ago for a nonlife threatening infection – due to the organism having developed antibiotic resistance to “safer” medications. I *refused* when they read the black box warnings, and I’m glad I did – so sorry for all those who have been injured by this class of drugs. I’m hyper mobile, pre-diagnosis, but am seeking an eds evaluation this coming year. It took be by surprise – nobody in my life knew that hypermobility could be problematic – least of all associated with connective tissue disorders. Good kuck everyone <3
I’m so glad you refused the Cipro based on that black box warning!! Phew. Not all are so lucky as we know. But it’s tough, because it is the last line of defense for some people and some conditions as you know.
Sadly, my best friend was floxed just this year (2022) despite knowing all about it, and trying hard to refuse it in the ER. Nope. They just overrode her concerns and ordered it anyway because she had tolerated it in the past. BOOM: floxed. Sigh. It’s sort of dose dependent – some can tolerate a little for a while, others not at all. But, just like with any medication, doctors have no idea which you are going to be just by looking at you. It’s truly not worth the risk except as a very last life-saving resort.
I have a question. Have you heard of this as a reaction? My sister and my daughter have HEDS. My sister is on disability for hers. Obviously, I’m the link into how my daughter was diagnosed. However, I am more a stiff zebra so I’m overlooked for the EDS diagnosis. However, July 2021, I had to take Ciproflaxin for food poisoning after a trip from Egypt. I only took it 3 days. But ten days later I swelled, and stayed swollen for a month. Then I suddenly developed diabetes in September, by November, I was projectile vomiting, and gained 30lbs. By January, it dissipated, I lost 15 lbs in 10 days & I was NO LONGER DIABETIC. Then, I started having flairs every other month for a month, where I was swollen, diabetes came back, my vision was horrible, my weakness & fatigue are horrible. It’s been 1.5 years now and I have about 1-2 hours a day of strength, my GI is so bad and I’m heavily distended. I go to Mayo and they have let me down. They only want to treat each individual symptom, if I test positive for what they seek to diagnose me with. They have ruled out so many individual conditions but refuse to see all my symptoms relating to one condition. Has anyone else experienced this after Ciproflaxin and EDS??? (Ps: I was diagnosed with MCAS in 2016 & had bilateral BMB to rule out mastocytosis).
Great question. And while I’m both not a doctor, nor your doctor, I highly suspect you were floxed. (It takes a beat for it to happen.) Also, if you haven’t seen my mentions of this elsewhere: there are a subset of EDSers who are STIFF! There is even a Stiff Zebras group on Facebook for you all. And I’ve seen people like Jen Brea who has a semi-large platform deny they could have EDS because they are stiff, despite the rest of their family being hypermobile. Like, I don’t know who invented this lousy condition, but they sure threw in a lot of red herrings, and reasons to doubt and gaslight ourselves and others about it!
Part of the reason I’m so passionate about this, as I first learned this when one of my friends years ago said this very thing- “I can’t have EDS, I was born stiff!” she said, waving flying bird hand signs at me. (Her fingers were bendy, just nothing else.) So I asked Dr. Jaime Bravo, a leading rheumatologist in Chile, and he confirmed, replying “Not all with EDS are lax, I know, I’m one of them.” ~! Hello!
But I digress. If, as I’m given to understand, floxing occurrs because teh antibiotic ends up attacking all of our mitochondria (which are literally ancient bacteria that co-evolved in us to supply our energy inside our cells), you can start to see how it could cause this body-wide reaction. Which, will affect folks in unlimited ways, not just loss of tissue integrity (torn tendons, snapped ligaments, etc.)
Add in any kind of mast cell reaction on top of that, which most of us ALSO have, which is also poorly recognized and diagnosed, and I see almost unlimited possibilities for reactions. So, while I can’t say for sure “yes, that was floxing, and everyone gets that”, I strongly suspect that was your body’s unique floxing experience. When you think about all the ways inflammation can mess with us (which MCAS causes), noting surprises me anymore. But I also hope someone else will weigh in here.
New warning from the FDA about this class of drugs and EDS patients! Thank you for the early warnings. One hopes to be wrong in these circumstances, but nonetheless it is a validation of what you have apparently been saying for years.
Ah yes, thank you Liz, I had to look but I did include that one in my growing list of updates. However, it was not prominent. So, I think I will re-arrange them in order from newest to oldest, and highlight that one as it is so important! EDSers are already at greater risk for aortic dilatation and rupture, we don’t need any extra help!
I think this caused Mast Cell Activation Syndrome and POTS in me. I got sick with bronchitis, treated with Levaquine, and got sick while taking Levaquine, and then I got sick weeks afterwards with similar symptoms to the Levaquine. I lost the entire summer dealing with multi-symptom disorders. It has been horrible! Does anyone know if there is any research suggesting a connection between Levaquine and MCAS and POTS? I would be grateful to find it…
I don’t know of anything specifically connecting the quinolones to MCAS and POTS, but considering that EDS and MCAS and POTS often play so well together in the sandbox (come together so often), it wouldn’t surprise me. I.e, it sounds like it triggered a sort of onset flare or storm for you, but MCAS and POTS were predominant for you, vs EDS for me. Also, we can have bad MCAS /MCAD reactions to any med, so that makes it harder to say in your case. I.e, one could trigger to Tylenol or any other drug/antibiotic even not in the quinolone family due to MCAD of any kind (MCAS or Mastocytosis or ?). I personally strongly consider POTS to be the natural result of lax tissues and mast cell mediators causing so much vasodilation among other things, but I’m not a doctor. Have you been checked for hypermobility yet?
I don’t understand how you can say you were skeptical and he just had an axe to grind. There are thousands of us damaged by fluoroquinolones, and nobody believes us. It’s unreal. Why in the world would we lie about that? And why should only the fact that his post was ‘well written’ make you believe him? You can’t argue with or deny the many thousands of us, and one day our voices WILL be heard.
I take everything I read with a grain of salt – as should you. It doesn’t mean I don’t believe it, but it doesn’t mean I do. I wait, and weigh what I read with evidence. After all, it’s opinion, we haven’t been able to scientifically prove it yet. But trust me, I’m now more than swayed as my article goes on to state by all the stories of floxing I read about in the Ehlers-Danlos and MCAD communities online including some good friends, so put down your sword – I’m on your side now, smile. (I went on to add several backup voices to that end, albeit again, just opinions still.)
But I do encourage being skeptical and keeping a discerning mind about any and everything you read always – allow for multiple possibilities, and wait and weigh things with your own evidence, and scientific evidence when available.
Basically, don’t believe everything you hear/read right off – even from doctors who are also just humans too after all, even if you do eventually agree with it later once you’ve gathered enough evidence. There are oodles of websites from people (patients and doctors both) with axes to grind that are much less valid, trust me. (Not about floxing, but other things/viewpoints/issues.)
And doctors can and do make mistakes, and are sometimes “married” to points of view – often quite outdated ones (like that Cipro cannot flox you, right?). In fact, that’s why we’re even having this discussion – they still think Cipro et al are safe. (Hey, they still think Hypermobile EDS is still rare too, lolol.)
That said, I’m very sorry for your clearly terrible experience from floxing. I hope you are getting some good support around it. I know there is at least one group or groups trying hard to help your voices be heard properly. I wish you much love and luck. Peace to you and thanks for adding your voice. That’s why I even wrote this post – on all your behalf. Cheers.
This might interest you:
http://www.jbc.org/content/290/36/22287.full.pdf
Oooh yes, thanks, especially this bit:
“these antibiotics inhibited
jumonji domain histone demethylases, TET DNA demethylases,
and collagen prolyl 4-hydroxylases, leading to accumulation of
methylated histones and DNA and inhibition of proline hydroxylation
in collagen, respectively.”
Uhm, connective tissue trouble anyone? I got your proline deficiency right here! Yes, thank you. BTW, a friend’s DC found that all of his CTD patients are deficient in…: proline, cysteine, lysine and methionine. Surprise. She tried supplementing with some amino acids for a bit but succumbed to the high levels of aluminum in the adjuvents. So switched to just Vit C shots and is doing great.
Thanks for sharing!
And another post hypothesizing that floxing as described above may also lead to increased CSF leaks as described here:
https://floxiehope.com/2017/05/09/do-fluoroquinolones-cause-cerebrospinal-fluid-leaks/
not all with CTD (connective tissue disorder) are hypermobile.
a sibling has no signs of hypermobility but had a retinal detachment after being prescribed Cipro.. and our father died of a AAA.
Which is why I wrote the very second paragraph reading:
“Heck, I’ll change that to read everyone, hypermobile or not should probably avoid the quinolones and Cipro, period. ”
Because indeed, not all are hypermobile, but everyone is affected by these drugs, and especially people with any form of CTD, hypermobile or not. I totally agree. That said, I dearly hope your family were not floxed causing the above. Hugs x
And yet more reason to avoid Cipro as of July 2018, it tweaks your mental health:
https://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm612979.htm
Keep up the good work. I am a practicing internist who does functional medicine. I have two siblings with EDS. They both took quinolones at some point. I told him I thought there was a connection and was searching the Internet when I ran across your blog post. All of those antibiotics should be taken off the market.
My interest is been in your bowel syndrome having written the first book for patients with the disorder back in 1989. Recently we have seen a clustering of patients who experience sudden abdominal bloating. In my 34 years of practice I have not seen anything exactly like this. Common thread-they all have been on quinolone and my theory is is is messed up their enteric nervous system. We know that quinolones can affect the peripheral nerves.
I’m certain my sister, who was a pioneer in the natural foods business and outliving most of the time in Paris. Her home is Boston. She has become an EDS Crusader and is looking to start some sort of international foundation.
Thanks
Gerard L Guillory MD
Aw thanks, will do! You too – the more EDS aware docs we can get the better!
Thank you to the author and the commenters. I’m turning 30, and seeing a fast decline in joint and tendon health. I was prescribed Cipro four years ago for a nonlife threatening infection – due to the organism having developed antibiotic resistance to “safer” medications. I *refused* when they read the black box warnings, and I’m glad I did – so sorry for all those who have been injured by this class of drugs. I’m hyper mobile, pre-diagnosis, but am seeking an eds evaluation this coming year. It took be by surprise – nobody in my life knew that hypermobility could be problematic – least of all associated with connective tissue disorders. Good kuck everyone <3
I’m so glad you refused the Cipro based on that black box warning!! Phew. Not all are so lucky as we know. But it’s tough, because it is the last line of defense for some people and some conditions as you know.
Sadly, my best friend was floxed just this year (2022) despite knowing all about it, and trying hard to refuse it in the ER. Nope. They just overrode her concerns and ordered it anyway because she had tolerated it in the past. BOOM: floxed. Sigh. It’s sort of dose dependent – some can tolerate a little for a while, others not at all. But, just like with any medication, doctors have no idea which you are going to be just by looking at you. It’s truly not worth the risk except as a very last life-saving resort.
I have a question. Have you heard of this as a reaction? My sister and my daughter have HEDS. My sister is on disability for hers. Obviously, I’m the link into how my daughter was diagnosed. However, I am more a stiff zebra so I’m overlooked for the EDS diagnosis. However, July 2021, I had to take Ciproflaxin for food poisoning after a trip from Egypt. I only took it 3 days. But ten days later I swelled, and stayed swollen for a month. Then I suddenly developed diabetes in September, by November, I was projectile vomiting, and gained 30lbs. By January, it dissipated, I lost 15 lbs in 10 days & I was NO LONGER DIABETIC. Then, I started having flairs every other month for a month, where I was swollen, diabetes came back, my vision was horrible, my weakness & fatigue are horrible. It’s been 1.5 years now and I have about 1-2 hours a day of strength, my GI is so bad and I’m heavily distended. I go to Mayo and they have let me down. They only want to treat each individual symptom, if I test positive for what they seek to diagnose me with. They have ruled out so many individual conditions but refuse to see all my symptoms relating to one condition. Has anyone else experienced this after Ciproflaxin and EDS??? (Ps: I was diagnosed with MCAS in 2016 & had bilateral BMB to rule out mastocytosis).
Great question. And while I’m both not a doctor, nor your doctor, I highly suspect you were floxed. (It takes a beat for it to happen.) Also, if you haven’t seen my mentions of this elsewhere: there are a subset of EDSers who are STIFF! There is even a Stiff Zebras group on Facebook for you all. And I’ve seen people like Jen Brea who has a semi-large platform deny they could have EDS because they are stiff, despite the rest of their family being hypermobile. Like, I don’t know who invented this lousy condition, but they sure threw in a lot of red herrings, and reasons to doubt and gaslight ourselves and others about it!
Part of the reason I’m so passionate about this, as I first learned this when one of my friends years ago said this very thing- “I can’t have EDS, I was born stiff!” she said, waving flying bird hand signs at me. (Her fingers were bendy, just nothing else.) So I asked Dr. Jaime Bravo, a leading rheumatologist in Chile, and he confirmed, replying “Not all with EDS are lax, I know, I’m one of them.” ~! Hello!
But I digress. If, as I’m given to understand, floxing occurrs because teh antibiotic ends up attacking all of our mitochondria (which are literally ancient bacteria that co-evolved in us to supply our energy inside our cells), you can start to see how it could cause this body-wide reaction. Which, will affect folks in unlimited ways, not just loss of tissue integrity (torn tendons, snapped ligaments, etc.)
Add in any kind of mast cell reaction on top of that, which most of us ALSO have, which is also poorly recognized and diagnosed, and I see almost unlimited possibilities for reactions. So, while I can’t say for sure “yes, that was floxing, and everyone gets that”, I strongly suspect that was your body’s unique floxing experience. When you think about all the ways inflammation can mess with us (which MCAS causes), noting surprises me anymore. But I also hope someone else will weigh in here.
New warning from the FDA about this class of drugs and EDS patients! Thank you for the early warnings. One hopes to be wrong in these circumstances, but nonetheless it is a validation of what you have apparently been saying for years.
https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-increased-risk-ruptures-or-tears-aorta-blood-vessel-fluoroquinolone-antibiotics
Ah yes, thank you Liz, I had to look but I did include that one in my growing list of updates. However, it was not prominent. So, I think I will re-arrange them in order from newest to oldest, and highlight that one as it is so important! EDSers are already at greater risk for aortic dilatation and rupture, we don’t need any extra help!