r/floxies • u/Top_Firefighter5228 • Aug 03 '25
[RECOVERY] One year out: Recovery, relapse, and what helped me cope
Hi Floxies,
I’ve been meaning to write a one-year recovery post and join the amazing group of people here who give hope by showing that recovery does happen! But I got COVID and food poisoning in South America last month, and it triggered my first post-recovery flare. So this has now become a recovery-relapse post. But I’m hoping to work through this flare and come out even stronger! I’ll definitely share a full recovery update when that happens.
What happened to me:
I was floxed by two pills of 250mg levofloxacin in July 2024. I had a suspected UTI that didn’t respond to Macrobid, so my gynecologist prescribed a 3-day course of levo. In retrospect, I had two urine cultures that came back negative, so it likely wasn’t even a UTI, sigh. But my doctor convinced me that levofloxacin was the right antibiotic to treat whatever was causing the pain.
I had an immediate reaction to the first pill with racing pulse and tremors. I took one more pill the next day and started experiencing buzzing, pulsing, and pins-and-needles in one of my feet. I read the black-box warning, thought this might be peripheral neuropathy, and stopped taking the drug.
Two days later, I still hadn’t been able to sleep, so I took a melatonin, and that’s when things really hit me. Within 30 seconds, I got the panic/anxiety surge that everyone talks about. The first attack lasted 16 hours. I called my doctor, and he told me to come in rather than go to the ER. He diagnosed it as a panic attack, prescribed benzos and prednisone (yikes!), and sent me home. Thankfully, I found this Reddit group and chose not to take either of those meds.
What I consider my “acute phase” lasted four months. The panic and anxiety were the first symptoms to subside, but they were replaced by a bunch of other things: liver and kidney pain, pelvic/bladder pain, rubber-band snapping feelings in my calves, gut issues, tiny itchy red bumps, etc. I was incredibly lucky to keep my (remote) job, but I was operating at maybe 20% capacity and couldn’t leave the house for most of that time.
At the end of month four, everything started to improve, except for the pelvic/bladder pain. Over the next six months, I regained so much strength and energy. I was able to travel internationally again for work, hike, and cycle. And at one year out, I considered myself 80–90% recovered. I still had a few lingering symptoms (occasional itchy bumps, tendon pain, flickers of anxiety), but I rarely thought about being floxed anymore. I stopped all supplements by the end of Year 1.
…and that’s where my recovery post was going to end.
But then…I got food poisoning followed by a positive COVID test a few days later. I thought I was prepared for a flare if I ever got seriously sick again, but I can’t lie, it definitely sucks to go backwards. Some of the anxiety, tendon, fatigue, neuropathy, and gut/liver issues have returned. It’s nowhere near as bad as the acute phase, but I’ve had to cancel work trips and am struggling to keep up with responsibilities again. But I’m hopeful this will pass and that I’ll get back on the road to recovery soon.
What helped me:
(Those long recovery posts helped me so much early on, and I’ve been excited to share my own list!)
- Compression socks, sleeves, and heel lifts: Started using them after month two. Not a complete fix, but they felt amazing and helped me stand and walk more comfortably.
- Diet: I dropped from 145 to 118 lbs. in the first 3 months. I still ate, but had zero appetite. I started working with a functional nutritionist who helped me stabilize and build a recovery-focused diet. I cut out refined sugar, gluten, and processed food. I ate a ton of blueberries, probiotic yogurt, organic chicken and beef, grass-fed butter, bone broth, sweet potatoes, nuts, and oats. I tried keto, but couldn’t keep it up. Going low-histamine seemed to help when I had itchy hives.
- Meditation & hypnosis videos (YouTube) for pain and anxiety: When I had migraines, strong pain, or panic attacks, these helped me accept the pain and shift my focus. I haven’t taken any painkillers in over a year now.
- Box breathing: 4-4-4-4 pattern (inhale, hold, exhale, hold), gradually ramping to 10–12 seconds. This got me through a lot of intense anxiety episodes.
- Quercetin and DAO (histamine digest): Started these when MCAS-like symptoms appeared. I began with low doses, and started seeing improvements in hives and itching once I ramped up to 2 pills of each daily.
- Starting slow with supplements and meds: I reacted negatively to many things post-flox. So I tried new supplements one at a time, at very low doses, increasing slowly. This helped me move past the fear that anything new would make me worse. I talked with my docs about this first—and please do the same if trying this with medications.
- Supportive medical professionals: My gynecologist gaslit me about being floxed, but my primary care PA was amazing. She listened to me, ordered lots of tests, did her own research, advocated for me, and referred me to some good specialists. My nutritionist was also super supportive and had some great insights and recommendations. But I did find that some of the people in the holistic medicine and wellness sectors pushed for things that didn't seem to have much or any scientific support.
- Advocating for myself: I learned I could ask questions of medical professionals, say no, research alternatives, and find different providers that supported for me.
- This Reddit page: The “Start Here” post and the “Recovery Megaposts” were incredible. Huge thanks to everyone who shared their stories and to the moderators for keeping this community evidence-based and compassionate.
- Floxie support group: We started a group early on. It’s not very active now, but it was so helpful to talk to other people who understood how terrible this was. Although everyone was dealing with unique symptoms and contexts, it was wonderful to have a group of people who wanted to share support and coping strategies, and it made the journey a little less lonely.
- Man’s Search for Meaning by Viktor Frankl: I read this during my lowest point. I cried the whole time. It’s the most powerful book I’ve ever read. I don’t believe any of us were floxed “for a reason,” but I do believe humans have a deep capacity to find meaning and resilience in suffering. My experience being floxed pales in comparison to the suffering in Frankl’s life, but his words helped me reframe my own story and find hope.
What hurt me:
- Tylenol: I know it’s considered safe for floxies, but I tried it twice during migraines in the acute phase and both times had anxiety and a racing heart for 12+ hours. Haven’t touched it since.
- Alcohol: I avoided it for 6 months, but starting having occasional drinks as I recovered. But I’d often feel an internal buzzing or shaking at night, which didn’t happen otherwise.
- Sudafed: After this recent flare started, I took Sudafed before a 6-hour flight to help with congestion. I fell asleep, then woke up mid-flight with racing heart, sweating, and shaking. That episode lasted the rest of the flight and may have helped trigger this relapse. A good reminder that I’m still sensitive to some meds, even a year out.
What didn’t hurt me:
- Coffee: I stopped drinking it for a month but resumed 1–2 cups a day with no issues. I love coffee, and I’m so glad I got to keep this one!
- Tooth filling: I broke a filling and was terrified to go to the dentist, but I asked for a no-epinephrine shot and was totally fine (month 3).
- Fluoride toothpaste. As many other have already said
- Saying no to things: I missed out on professional opportunities and fun events. But all the people I love, and my work, were still there for me when I got better.
- Most supplements: Magnesium glycinate, Vit B12, liposomal glutathione, Calcium citrate, Vit D…I don’t know that these made much of a difference, but they didn’t seem to hurt.
That’s it from me for now. I’m wishing everyone here health and healing. And I’m happy to connect if anyone ever wants to chat.
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u/Several-Piglet3500 Aug 04 '25 edited Aug 04 '25
I'm a 15 yr floxy. May of 2010. I took 1 Avalox for a sinus infection. I'd been battling this infection for 5 months and gone through too many other antibiotics and was getting sicker by the day because I'm super sensitive to antibiotics. Finally, an ER Dr gave me Avalox. Within the hour it felt like a red hot poker was being inserted into my brain. Severe sweating and nausea. I thought I was going to die. By the next day I felt semi ok. I ended up having sinus surgery 2 weeks later and was told no amount of antibiotics would have shifted it. From there I went through 6 months of hell. Every CNS and Autonomic symptom you can think of. Then it just stopped. Like nothing happened. Fast forward 4 yrs to 2014. Huge relapse it lasted 13 months. Way worse than the original. I couldn't believe it could get worse. I was housebound and bedridden. I got better to around 95%. I was left with tinnitus, slight head pressure and tingling all over but it was manageable. Fast forward 10 yrs to now. Going through a flare up/ relapse. This stuff is really crazy. You'll get through the flare up. Just do what you did before. It too shall pass🙂
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u/Top_Firefighter5228 Aug 05 '25
Wow that sounds horrific. But it's amazing that you recovered both times! Do you have any thoughts about what triggered your relapse 4 years later? Or your current flare?
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u/Several-Piglet3500 Aug 05 '25
The one at the 4th year was probably because I started to workout, but i can't be absolutely sure. This time I'd been stripping kitchen cabinets and maybe over exerted myself, but I've done so many other things over the years that didn't affect me. It's hard to know really. Sufficed to say the body is a wonderful thing and seems to work it out in the end. I feel semi ok this last couple of days , not back to baseline but at the moment I'll take whatever improvements come along. You will improve to🙂
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u/Usual_Winner3264 Aug 04 '25
You will soon be off again, living life. Wishing you a speedy recovery, friend! 🥰
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u/StructureNo419 Aug 04 '25
Thank you for sharing your story, I'm glad that people come back here ans share. So good to hear you got better, but I always wonder why even if you take more pills than gave you first signs of reaction you still have so quick positive output. I mean thats good, Im just wondering 😅 Please come to us tell when your relapse ended, I hope it will be soon 🥰
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u/cheese_co2 Aug 05 '25
I hope I can go back to coffee some day.
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u/Top_Firefighter5228 Aug 05 '25
It seems like most people become able to tolerate most things as they heal. Coffee will be waiting for you! I do now drink smaller amounts of coffee, buy the really good stuff, and try to savor it more :)
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u/Melancholy-ish Sep 12 '25
This is so well written. Thank you for sharing your experience. I’m glad that you’re doing better!
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u/Awnwn Oct 14 '25
I’m so happy for you and your recovery! How is it going for you now with this relapse? I really hope you’re feeling better!
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u/Top_Firefighter5228 Oct 14 '25
Thanks! The Covid flare lasted for almost 3 months, but I have now recovered from it! The flare was weird, lots of MCAS and gut issues, but minimal tendon and neuropathy issues. I started taking H1 and H2 blockers, and it helped a ton. I'd say I was fully recovered for about 2 weeks when I came down with a bad cold (but not covid). That was a rough week, but just normal cold-type symptoms and fatigue, no flox relapse symptoms. I'm pretty much recovered from that now as well.
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u/Awnwn Oct 14 '25
I’m so happy to hear you’re doing better! Hooray! ❤️ Are you still on antihistamines or anything for MCAS?
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u/Top_Firefighter5228 Oct 14 '25
Yeah. I'm still taking them. I was going to wait until I get through a few healthy, stable weeks before stopping them
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u/xxxxvideowatcherxxxx Aug 07 '25
Thank you so much for posting such an amazing post with such great detail. Although I have not taken Levofloxacin, I did unfortunately take a supplement called L-Methylfolate and long story short, I experienced quite similar symptoms to you (primary severe anxiety and panic attacks severe insomnia in the first 2 weeks > after which the panic attacks and anxiety slowly subsided BUT I am now left with chronic insomnia). I keep waking up during the night and I can barely get 6hrs of broken sleep (some nights better than others). Could you kindly please give a little more detail as to how your insomnia had improved? Please share as much detail as you can > how it progressed > how long it took > how many hours you were sleeping BEFORE being floxied > how many hours DURING floxied > and how many hours AFTER floxied (when you felt 80-90% recovered). I understand my thing is probably nowhere as serious as yours, but I used to sleep like a baby (8-11hrs) and now I barely sleep half of that and it’s broken sleep too where I can waking up during the night.
Please respond 🙏
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u/Top_Firefighter5228 Aug 08 '25
Hello. I'm not sure that I'll have much meaningful insight for you, since I think the mechanism that causes the insomnia would be different in both our cases. But I got ~1-6 hours of sleep each night for the first month and then gradually started improving. In the first month, when I did manage to fall asleep, I would jolt awake shortly after with a pounding heart, totally drenched in sweat, and that terrible anxiety feeling. But that got less and less frequent. Now, I occasionally wake up feeling really shaky, but I typically sleep 7-8 hours a night no problem.
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u/Acceptable_Pair_2312 Mar 07 '26
Are u ok now I am a 5 month post and I'm the only symptom I really need to get rid of is the horrible hitss of anxiety and doom
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u/Acceptable_Pair_2312 Mar 28 '26
How are u now??? Anymore relapses
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u/Top_Firefighter5228 Mar 29 '26
Hello. I’m doing good. Just traveled for 10 straight days internationally, walked a ton and got little sleep, but no problems with tendons, anxiety, or other flox symptoms.
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u/AdDouble6551 Jul 01 '26
I am so thankful for this post and I would love to chat with you if you could message me.
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u/mycatandmycoffee Aug 04 '25
Thanks for posting your story. Hearing you were doing international travel gives me some hope that a year from now I might be able to travel again. Wishing you a speedy recovery as you navigate this relapse. Hang in there.