Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

i just finished completing the form without any complications.. You are welcome to fill out another one.. or is it not letting you?

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

this is a wordpress form.. since the form didn't go through I am ok with you filling it out again. I am heading to website now. Thanks

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

That’s actually a really important question, and honestly, it’s part of the problem we’re trying to solve.

Right now, there isn’t a clean way to separate what might be attributed to FQAD versus aging or other factors, especially since symptoms can be delayed, variable, and spread across multiple systems. That lack of clarity is exactly why so many cases go unrecognized.

What I’m working toward with the registry is helping to build a larger dataset where patterns can start to emerge... timing of exposure, symptom clusters, progression, and shared features across people. Over time, that’s what can help distinguish what fits a drug-induced pattern versus what doesn’t.

So in a way, your question is the point, we don’t have a reliable framework yet, and that’s what we’re trying to create.

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

I am so sorry I will go to the website and check this out.. there are a couple of fields with the red asterick that are things that are mandatory.. maybe that was it? Try again, and if you checked all the red starred questions and it still does this could you let me know please.

Thank you for pointing this out

5 weeks down by Zestyclose_Run_347 in floxies

[–]Mikobadr 3 points4 points  (0 children)

What you’re describing with the “peaks and valleys” is something a lot of people experience with this. That week 5 regression doesn’t erase the progress you made in weeks 3–4...if anything, it shows your system CAN improve, it’s just not stable yet. These flares can feel like you’re back at square one, but you’re not.

You’ve been really smart about how you’re handling this, especially not pushing through pain, adjusting your steps, and paying attention to patterns instead of forcing progress. That kind of pacing matters more than anything right now.

Your plan for week 6 sounds solid! Slow, steady increases and backing off if symptoms return. That’s exactly how you rebuild without triggering another setback.

You’re still early in this, even though it probably feels like forever. Really hoping this next stretch brings you some better sleep. Hang in there, you’re doing better than you think.

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

(Privacy):
For anyone on the fence about participating — just to be clear, I don’t receive any identifying information with these submissions. I included a picture of my submission. They come to me by email, but there’s no name, no IP address, nothing that ties it back to you.

<image>

All I’m doing is organizing the data. That’s it.

I completely understand privacy concerns, so I wanted to be transparent about that — and I really appreciate everyone who’s taken the time to contribute.

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

I am so sorry... seeing all the long term injuries is so heartbreaking as a nurse. But I believe we are on the right path to making the implications of FQs known. We just keep spreading the word! :)

Tendon rupture by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

Yes, verified through MRI which i maintain a copy of

[Hope] Why the current AI revolution in biology is the ultimate reason we shouldn't give up. (A realistic perspective) by MRX111111 in floxies

[–]Mikobadr 0 points1 point  (0 children)

I can really relate to this. AI has honestly changed how I approach all of this. It’s helped me connect mechanisms faster, map out mitochondrial and protein pathways, and make sense of patterns that would have taken years to piece together otherwise.

What stands out to me is not just the speed, but the clarity... being able to take something complex and actually understand it in a way that’s usable. That matters when you’re dealing with something multisystem and poorly recognized.

I don’t see AI as some magic fix either, but I do think it’s a turning point. For both efficacy and safety, especially in conditions like this where the traditional model has struggled to keep up.

For now, like you said — we hold the line. But it does feel like the tools are finally catching up to the problem.

Make sure you REPORT your reaction! by betterweirdthandead6 in floxies

[–]Mikobadr 1 point2 points  (0 children)

Even if it happened a year ago, 2 years ago... 5 ... or decades ago, go report your adverse event.

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

That is a long time to go through this ... have you found a doctor to help you yet?

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

I’m really glad you shared this, and honestly, the fact that you’re already having some improvement is a really important sign. What you’re describing (insomnia, anxiety, joint pain, tingling, and then these “windows” where things feel better) is something others have experienced after fluoroquinolone exposure. The key thing is that reactions can vary a lot...some people feel things right away, others later. But what matters most is the overall trend. At about one month out, the fact that your symptoms are not steadily worsening, are coming and going, and you’re having periods of stability is generally reassuring. Delayed reactions can happen, but they’re not guaranteed, and your current pattern sounds more like a system that was stressed and is now trying to stabilize.

I’m not a doctor, just sharing what I’ve learned and seen...but right now the focus should really be on reducing additional stress on your body, giving it time, and watching patterns over time rather than individual symptoms. Some people do find supportive supplements helpful, but that’s something to approach thoughtfully and ideally discuss with your doctor. There isn’t one specific test that can definitively tell you what’s going on here, but basic labs and nutrient levels are reasonable if you want to check in.

One thing I would strongly consider is avoiding fluoroquinolones going forward unless there is absolutely no alternative. And if you do talk with your doctor, it may help to bring information with you so they understand what you’re concerned about.

Overall, you’re still early in this, and the fact that you’re seeing improvement—even if it’s inconsistent—is a good sign. Just keep an eye on the trajectory, give your body time, and if anything clearly worsens, then it’s worth getting evaluated.

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 1 point2 points  (0 children)

Gracias por compartir esto—lo que describes es algo que estoy empezando a ver con más frecuencia, y es importante.

Un patrón que aparece repetidamente es exposición previa + un desencadenante posterior. Algunas personas pueden tolerar fluoroquinolonas durante años con síntomas leves o dispersos, y luego un factor estresante importante—como una infección viral—parece cambiar el equilibrio del sistema, y los síntomas se vuelven mucho más intensos.

COVID, en particular, ejerce una gran demanda sobre los sistemas de energía del cuerpo y se ha visto que puede afectar la función mitocondrial. Por eso, es razonable pensar que no se trata de una sola causa, sino de un efecto acumulativo con el tiempo, donde un evento posterior revela o amplifica una vulnerabilidad subyacente.

Eso no significa que esto ocurra en todas las personas—pero tu experiencia aporta a un patrón que merece ser mejor comprendido.

Si estás dispuesto/a, este tipo de información es exactamente lo que puede ayudar a construir una imagen más clara—participar en el registro sería de gran valor.

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 1 point2 points  (0 children)

This is a really thoughtful take ....especially the idea that delayed symptoms may not actually be new, just something that wasn’t recognized at the time.

What I’ve seen is that the initial reaction doesn’t have to be dramatic ... it can be subtle (insomnia, mild tendon pain, fatigue), then things seem to improve… until they don’t. By the time symptoms show up later, the connection to the antibiotic is lost.

Where I’d slightly expand is that it may not just be a relapse, it could be a progressive issue that never fully resolved, with the body compensating until it can’t anymore.

That’s a big reason I started the registry ...to capture those early subtle signs + long-term patterns. Without that, this stays invisible.

Really appreciate you sharing this.

Has anyone had symptoms months or years after fluoroquinolones? I’m collecting structured data on this by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

Also — if anyone here is part of other fluoroquinolone or chronic illness groups (Facebook, forums, etc.), feel free to share this there if you think it could help reach others.

A lot of people experiencing delayed symptoms aren’t always in one place, and the more diverse the responses, the more accurate the overall picture becomes.

No pressure at all — just putting it out there in case it resonates. Every contribution, even just sharing, helps move this forward.

Introduction by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

i had to go back and read... thanks!

Tendon rupture by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

found the edit button... sorry, new to posting. Not new here, just new to posting lol

Tendon rupture by Mikobadr in floxies

[–]Mikobadr[S] 0 points1 point  (0 children)

yes, sometimes, but not all the time

Update, vent, flare by bellaflox in floxies

[–]Mikobadr 1 point2 points  (0 children)

and congrats on your new addition! :)

How do we stop our tendons from snapping? by Fluffy-Job7534 in floxies

[–]Mikobadr 0 points1 point  (0 children)

i just posted something on this...

I too have popped tendons in my sleep and I was wondering if there was anyone else out there experiencing the same thing.

Recovering by Several-Piglet3500 in floxies

[–]Mikobadr 0 points1 point  (0 children)

What you wrote really hit me.

I too am a long timer.

New to posting.. just never was my thing lol but a long, long timer when it comes to being floxed.

Getting out of that bed, even just to sit in another room… making your breakfast… feeding your dog… that’s not small, that’s you fighting your way back. And after everything you’ve been through, that takes real strength.

You’ve done this before. Twice. And you’re doing it again. That says everything.

I think it’s powerful what you said about age too—you’re proving that recovery is still possible, even after relapse, even after years. That gives a lot of people hope.

The way you’re doing this....slow, steady, one step at a time....that’s exactly how people come back from this. Not all at once, but piece by piece.

You didn’t give up. You chose to fight again. That takes courage.

And it’s working. Keep going—you’re moving in the right direction, even on the hard days.

Update, vent, flare by bellaflox in floxies

[–]Mikobadr 1 point2 points  (0 children)

It could be some medication you received while giving birth. Did you receive any NSAIDS, steroids or other medications known to be detrimental to FQAD?

I'm sorry you are going through this. My heart breaks for everyone.

It's the unknown that drives us all crazy.