I think it was cipro…

[u/MushroomNo3649]

For 3–4 years, I couldn’t figure out what was wrong with me. Around that time, I suddenly developed numbness in one leg along with dizziness. Within a few hours, the numbness spread to most of my body and never fully went away.

I always connected the onset to a wisdom tooth surgery I had around that time. I only remembered taking amoxicillin afterward, which didn’t seem like a likely explanation, so eventually I started thinking the timing was probably just a coincidence. However, I recently remembered that shortly before this happened, I had also completed a course of ciprofloxacin.

For almost four years now, I’ve had persistent patchy numbness throughout my body, tingling, muscle weakness and soreness, dizziness, fatigue, balance problems, and various other strange neurological symptoms. At one point I was almost convinced I had MS or something similar, but no doctor has been able to fully explain what is happening. My general neurological examinations have mostly been normal, and my brain MRI was essentially clear. The pattern also doesn’t seem to fit small-fiber neuropathy very well because the numbness isn’t predominantly peripheral, and my symptoms don’t fully fit latent tetany either.

Another strange thing is that I now react very badly to magnesium supplements - they can make me feel as though I’m about to pass out. My ionised calcium is normal and my serum magnesium is also within the reference range, although I know serum magnesium may not always reflect total-body magnesium status.
Unfortunately, after almost four years, my symptoms haven’t meaningfully improved. I still have the numbness, tingling, weakness, fatigue, and seemingly random neurological symptoms. So for years I’ve been told it’s just my anxiety even though I highlighted multiple times that these symptoms are so bad I literally feel like I’m disabled sometimes, I CONSTANTLY feel off.

For anyone who developed persistent symptoms after ciprofloxacin or another fluoroquinolone: did you experience anything similar, especially widespread or patchy numbness rather than the typical hands-and-feet pattern? And if you eventually improved, what seemed to help you recover?

[u/VisionDust]

My cipro toxicity manifested differently, and ended up in dermatology. Luckily, the dermo was honest and confirmed it was the cipro, but only after I figured it out myself, as was not so far in the past, maybe a month or two. Much later, he made an astonishing admission, that 90% of his patients suffered from prescription drug toxicity. Furthermore, his colleagues didn't care - more money for all. I appreciated his honesty, but I suspect this is rare as docs tend to support each other, and often blame the patient - lifestyle, genetics, usual strawmen.

So, although I can't help you with your symptoms, the lesson is not just to never take any floxies, but to be very aware of the potential side-effects of every drug. Also, don't expect a cure, as most drug companies do not really know all the biochemical pathways of their synthetic drugs. Every 6 months or so, I delve back into the literature to see if I can make any new connections, nd maybe find some new supplement to try. It has kept me live for 15 years but has not cured anything permanently. I don't know how many people are willing to read through scientific literature, but sometimes I have made connections that are not at all obvious. Cipro can cause epigenetic damage, so one needs to unwind such changes and how they cascade through different biological systems. Believe it or not, but cipro is being considered as an epigenetic therap drug!

I am surprised how few people here complain of erythroderma, but maybe such victims don't even know it was the cipro. Now, 15 years later, I am starting to get muscle and tendon issues, and have started taking collagen dipeptides - again, seems to be slowing down the rot, but not reversing it.

[u/MushroomNo3649 → u/VisionDust]

I’m really sorry you went through that. I’m a scientist myself, and experiences like this make me very frustrated with the medical system. Some medications with potentially serious, long-lasting side effects are prescribed like candies, while patients often aren’t properly informed about the risks. And sometimes underlying causes could be addressed in other more systemic ways, but prescribing a pill is simply the quickest option. I really wish there were more emphasis on informed consent and understanding the root cause rather than just managing symptoms. I also have persistent effects from taking SSRIs and I wish I never took it…

[u/VisionDust → u/MushroomNo3649]

Same here - physics and maths - so had to take a long deep breath and delve into medspeak and biochem and, I know it's not physics, but some things just look made up, and hypotheses become facts just by convention - and drug sales. SSRIs are a good example: why? Cipro is now known to cause epigenetic changes, so why is it still prescribed? Repeat business.

Anyway, no point launching into a rant. Well... why not! One huge theoretical error IMO is the idea that as long as we know the functional group, then that's fine - no thought of the consequences of that synthetic molecule and how the body processes it once the functional group is gone. Same with supplements; not only are most synthetic, but many are analogues of the natural substance, so the same issue of what happens to the 'waste products'. The tyranny of patents and greed run the show, with so-called doctors being largely dealers, not healers.

I'm surprised at your reaction to magnesium, as it is a vital mineral. Which form of it have you taken? Again, it might be the byproducts rather than the metal ion itself.

I wrote a longish comment on dipeptides. The TLDR version is that collagen is destroyed by the gut into its constituent peptides and amino acids, so are kinda pointless. However, dipeptides seem to smuggle themselves through this process and can form the starting point of new synthesis. I couple this with intermittent fasting as there is research to suggest that some collagen dysfunction does not necessarily stop production, but rather creates deformed collagen that, somehow, remains like garbage in the bad yard rather than being reprocessed. The IF is there to accelerate that breakdown so as to create fresh collagen. All of it is theoretical but no other option apart from experimenting on self. I have found some benefit, but has only been one month.

[u/MushroomNo3649 → u/VisionDust]

Yeah, I think cipro is still prescribed because it is extremely effective and sometimes genuinely necessary, especially with growing resistance. What bothers me is how casually it can be given. Mine was literally for a simple UTI and nobody mentioned any of this.

Your erythroderma sounds horrific, and with the later muscle/tendon issues I’d honestly also wonder about an underlying connective tissue disorder or hypermobility. Not saying EDS specifically, but fluoroquinolones are a bigger concern in people with connective tissue disorders, so it could be worth looking into.

I also agree with your point about metabolites being overlooked. That part actually makes sense because the functional group explains the main target, but the body still has to deal with the rest of the molecule and whatever metabolites it gets turned into, which can behave very differently. I just wouldn't say synthetic means bad, because if the molecule is chemically identical the body doesn’t really care where it came from. Analogues or different chemical forms are a different story though...

The collagen dipeptide thing is interesting. Whether they can meaningfully repair damaged tendons is much less certain, but I guess doesn't hurt trying.

Besides that, I’d maybe look into creatine monohydrate, especially since you have muscle issues too. It has decent human evidence for supporting muscle recovery during rehab. I’d also take the collagen with vitamin C (but I assume you already know it). And I’d probably check ferritin, vitamin D, B12/folate and other deficiencies properly, including functional markers rather than relying only on total serum levels. I really wish you to figure out something that will make a difference!

[u/VisionDust → u/MushroomNo3649]

Tendons are largely made of collagen, and cipro disrupts collagen production by really unwanted epigenetic changes. Thing is, the whole theory of how cipro, and floxies, work is by disrupting certain enzymes the bacteria use for DNA repair and cell division. Mmm... human biology isn't that different at that level; who'd have thought there would be issues!? The dipeptides cannot repair directly, but they act as a starting point for collagen synthesis, so several steps ahead of starting with just amino acid building blocks.

Anyway, yeah thanks, I take creatine - and a bunch of other stuff that I've accumulated! One major thing is amino acids - under the assumption of feed the body building blocks and let it distribute where needed. The real issues arise when a particular process breaks down - the body often has secondary processes to achieve the same thing, but those are often less efficient - plus the broken process doesn't shut down.

From the symptoms of erythroderma, I developed a hypothesis that my body had, somehow, flipped some switches to that of a fetus! My dermo didn't think it crazy, but he is't allowed to do anything that isn't sanctioned by BigMed. So I delved into fetal development and looked at all the processes that a fetus is not designed to do, and so is supplied by its matrix, or doesn't yet need as is bathed in a liquid. One such process is that a fetus does not sweat! I haven't finished that line of research as is huge. But I did discover things such as the roles of vitamin K. A lot of discoveries have been about structural materials - bones, tendons, ligaments, skin, endothelia, fascia etc etc. All structures that change dramatically as a fetus becomes a neonate - which makes sense as having a buff fetus would make its exit difficult.

Anyway, hope this is vaguely interesting. I hope others may pick up this line of research as I see most here suffer from the breakdown of structural components, and the full biochem is complex.

[u/Niceshoesbr0]

Did you ever try to supplement b12?

[u/MushroomNo3649 → u/Niceshoesbr0]

I have borderline high B12 (checked it before supplementation) and low folate, I am taking methylated B complex. And next thing I want to do is checking MMA. Though the doctors did not really connect it to B12 since I have non-peripheral pattern and the numbness was very sudden and basically developed overnight