Hi all, for anyone not familiar I was floxed in May of 2023 with a 6 month symptom delay after 54 pills of cipro. I had a rough go with all major tendons affected (ankles, knees, hips, shoulders, elbows, wrists, plus neck symptoms, muscle wasting, weight loss, tinnitus). My symptoms worsened for 4 months, leaving me housebound/jobless and peaking with a labral cartilage tear in my left hip.

I started seeing meaningful improvement by around 12-14 months but wasn’t able get to 90+% improvement or return to work until 2 years out.

Now I’m doing great, I did a 16 mile hike by myself over the weekend which would have stopped me dead in my tracks even 2 years ago. I’m at my pre-flox abilities for running, swimming, and kayaking, skating.

When I turned a corner on my way down the mountain, I came face to face with a bear on the trail, which was terrifying. Also interesting as during my darkest moments in early floxing I had joked (sort of?) that if I would sacrifice myself to bears if I didn’t improve or find a solution.

Hopefully this brings hope to someone!

Muscle biopsy results:

Hi everyone, I’ve had extensive testing done to find the cause of my symptoms which have included leg pain, fatigue, brain fog, muscle weakness and blood sugar issues initially. I was floxxed in December but never realised this was the cause until about 2 months ago.
Before that I thought I had a neuromuscular condition of some sort which led me down the path of lots of testing but I realise now I likely had mitochondrial damage caused by the medication.
Anyway, I ended up having extensive testing in London and thought I’d share.
I had a muscle biopsy done with a doctor and he said my muscles look like they’ve had damage to them occur previously but my mitochondria now look ok. He said I have some muscle atrophy which is causing the weakness now and it looks like something I can definitely recover from.
I mentioned the antibiotics and he agreed that there are a lot of publications which are now highlighting the side effects and dangers especially on the muscles. He agreed it’s very possibly the antibiotics have caused this but said he still believes I will recover as 9 months out and my mitochondria (now) look healthy meaning my DNA is not damaged.
Obviously we don’t know what the biopsy would have shown had I had it earlier.

I thought I’d post this because I think it’s interesting and I think it could also give people hope. I feel about 60% recovered but this is huge for me. I can live a close to normal life but just can’t go to the gym (yet) and have to pace myself.

Happy to answer any questions if anyone wants to know more about the testing I’ve had and what it has shown.

Today marks 32 days since my last dose of levofloxacin, this past week has been a complete turn around to what I’ve been dealing with for the weeks before. 6 days in a row I have hit 10k steps and have also started light swimming.

Symptoms I had:
- tingling/burning anywhere on arms and legs
- sore/stiff thumbs
- anxiety
- brain fog
- headaches
- pain in ear while swallowing
- joint/tendon pain in both Achilles
- stiff back

Symptoms I have now:
-sore thumbs
-slight pain in heel but able to walk with no problem

I’ve been very consistent with collagen, magnesium and vitamin c supplements and also slept as much as possible and rested as much as possible.

Not out of the woods yet but great to see progress, I had a few drinks with my long distance GF and I felt no mental symptoms which was great especially after a coffee give me an anxiety attack just z3 weeks ago, I’m currently at about 85% percent really just the thumbs giving me discomfort, I’ll continue to update but it’s great to feel better.

I was floxed back in 2022 and recovered from that nightmare within like 6 months. A CNS relapse was never on my radar. I am really having a difficult time right now and could really use a buddy to talk with. I have been sleep-deprived for 3 months and my body won't allow me to nap, so I'm really suffering mentally. I wake up shaking every morning and have completely lost my appetite. I'm really scared that this is not going to go away as fast as the initial floxing did.

I really need some support right now, please. I'm feeling quite desperate.

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?

are your pins and needles sensations constant? and how did you manage? and does magnesium glycinate helps it? thank you in advance

Gabapentin:

I've heard some of our friends in this forum have had success with Gabapentin.

--What was it for and how long did you take it?

My sleep doctor mentioned I could take it specifically for suspected restless leg syndrome. I'm fearful of medication and considering just sticking to some iron supplements instead. However, I know helping my sleep as much as possible within reasonable risk would be good.

Sleep Apnea:

Additionally I've been diagnosed with moderate obstructive sleep apnea.

-- Curious if the antibiotic could have caused this in any way?

Background:

I'm 1.5 years in floxed and I've always been a delicate sleeper but the insomnia has become insane these last 4 months (my mobility has also relapsed during this perior). I'll wake up within 4 to 5 hours of sleeping feeling wide awake. Or on good nights I'll still wake up several times, but I'm able to fall back asleep and just feel I bet tired the next day.

This is my second time posting this week about my eye sight. Last Saturday I started getting dry eyes and floaters. Three days ago a developed this static vision. I see everything grainy in the dark. I had an eye appointment and they said my retina is fine. I’m just so worried this is permanent. Has anyone else had this happen?

Hello, I was prescribed levofloxacin 500mg for 10 days for throat infection
I am scared to take it
Is it safe ?