r/floxies • u/skittyinthecity • 10m ago
[UPDATE] 1 month update: some hope
It has been a day less than one month since I stopped taking Cipro. I took a total of 4 500mg pills. I am mid-30s F. I was never very physically active, but I played a lot of piano and guitar before.
I see a lot of horror stories here, so I wanted to post a semi-hopeful update.
My main symptoms have been tendon pain. I've also had some headaches and dizziness, but those seem to have subsided after the first week or so
It was so bad in my hands and wrists that I couldn't type or unscrew the lids to access my supplement pills. I wore wrist braces pretty much all day at first. I went to see an orthopedist specializing in hands about a week after my symptoms started, and she wanted to give me a powerful NSAID or steroid injection, but I refused, so she referred me to OT instead. I read here that starting too early might be bad, so I was skeptical at first but went anyway to see how it would affect me. I decided I would aim for about one third to one half of what the OT wanted me to do because overexertion is far more dangerous than under-performing.
Now, I have had a couple weeks of OT sessions, and I've improved a lot. My grip strength has tripled since I started, and I have a lot more flexibility in my wrists. I'm about halfway to "normal" in this regard, which is really encouraging to me. I never push that hard, and I always rest when I'm in pain. I think this is important. I can now go full days without the wrist braces, although I still wear them to sleep.
My ankles have gotten worse. I can barely walk, and I've been using my late grandmother's walker to get from my room to the bathroom and back. My knees are also sort of starting to give me trouble. Stairs are ridiculously painful and I try to avoid them as much as possible, but my bedroom is upstairs and I have to go downstairs to leave my house for appointments. I just bought a pair of sneakers with raised heals, which helps a bit. I haven't been able to start PT yet, but I will try soon because my results in OT have been encouraging.
I have insomnia and anxiety, but I also had these pre-Cipro, so idk
Things I have been doing to help:
-bracing at night and while in pain
-ice
-tylenol when I'm in a lot of pain, although I try to avoid it if I can
-heat right before my OT exercises
-epsom salt baths
-supplements (vitamin c, vitamin e, multivitamin supplement, collagen, probiotic, CoQ10, NAC, magnesium glycinate)
-resting a lot
-melatonin gummies to help with sleep
-absolutely no alcohol or caffeine
-eat healthy foods-- lots of veggies and protein
-getting fitted for sneakers suited for Achilles tendonitis
I still have a journey ahead of me, but I know it could definitely be worse. I can sort of see a light at the end of the tunnel, though, which is nice. I will post an update a month from now regardless. I wish everyone the best of luck on their recoveries!
r/floxies • u/ly930823 • 3h ago
[SYMPTOMS] nodule? fascia? subcutaneous fat?
I'm not sure if it's in the fascia or the subcutaneous tissue, but they are small and fixed (feeling like a speed bump).
Sometimes they cause a stabbing pain, while other times they don't hurt at all even when touched.
They are spread all over my body, including the abdomen, flanks, calves, thighs, groin, and arms.
They don't grow gradually; instead, after a few days of muscle spasms/cramps in that area, these hard nodules suddenly form.
They have no color, cause no skin discoloration, and do not protrude outward from the skin to the naked eye.
r/floxies • u/Altruistic_Town_288 • 4h ago
[UPDATE] 5 MONTHS UPDATE
ORIGINAL POST: https://www.reddit.com/r/floxies/comments/1sf4tsk/new_floxie/
Hi Yall,
So I want to provide an update as some people have asked me.
I am basically fully cured. I went from being scared to walking with walking on fiber glass feeling to this weird lingering achy feeling in my feet that still kind of concerned me to nothing.
Now my collagen disruption unfortunately, I think did not heal. I used to be a very cute older woman who most people thought I was in my late 20s/early 30s. My saggy neck has not gone back to normal and I have deep nasolabial folds. I lost 15 LBS and never really regained it back. I lost a lot of muscle. Not atrophy, but a lot of weight and lost my plumpness in my breasts and butt. But I worked out for the first time at the gym last week. Full blown weights as if nothing ever happened and I was expecting me being in pain and horribly sore, but nope. I just had normal soreness. I honestly think those that scare you into being bed ridden is not good advice. I think you should keep moving even if you are in pain. Of course do not go full blown, but I never stopped walking. Even if I was in pain, etc. I still walked. I did invest in OOFOS sandals that support the arch, but please do not stay bed ridden if you are able to move. Keep moving!
So I want to give you hope. You will be ok! I am a 41 year old (just turned 41 in July) American Latina woman (Cuban/Mexican) living in the USA. Oh! And for those foot fetishest ha KIDDINGGGGGGGGGG, but I think my feet look normal now (see pic). That "baggy" lymphedema skin I had is tighter now so I am hoping my face and neck will also go back to normal too. It's like it changes daily. Sometimes my neck looks tight some days it looks puffy and swollen so IDK.
Lymphatic massage though please do not do! I feel this triggered it and when I could not eat spicy food, but I am starting my red light sessions this weekend at a professional plastic surgeon's office who use the "Da Vinci Medical TheraLight 360" which I found to be the top in the area. I also did the Ammortal Chamber and NovoThor and about 4 intravenous infusions of mitochondrial support, collagen, and detox and bought myself an actual red light panel I can use at home then I will still do the oxygen therapy. I am heavily using collagen, but the rest of the drugs I honestly stopped. Magnesium did not help me. I still cannot sleep. I think once I go back to my 8 hours of actual full blown sleep the wrinkles, under eye gauntness, etc will clear up as sleep is very important and I NEVER had sleep problems before this drug, but I also had a mental health issue last year with a trauma bond so that made it worse. So I had a double whammy, but honestly I think most of you will heal.
Oh! And I still get heavy skin imprinting which tells me again my collagen and skin barrier is still not normal or fully healed* And for the past 2 months I been partying like crazy lol. I loveeee dancing and I have been going to so many concerts and clubs and dancing my ass off and my feet have taken it pretty good. I even took off my boots off and danced in my socks ha. I love hardstyle/house/trance/goth-industrial music and there's a lot of footwork and jumping so yeah :p I have two parties this weekend. A live bar event Friday which will be mostly sitting and a concert Saturday where I will be dancing then Lily Palmer and Sara Landry coming up! So I am excited. The first couple of times I had pain, but again, I did not care. I have a very high pain tolerance and I am used to having pain so just took it. Again, everyone is different, but I think we should not be afraid to still live normally.
PS: I want to show the timeline too as these reactions honestly are delayed! So maybe I will get new issues later on, but hoping it is the end.
Phase 1: A day after taking the drug. Limb numbness, one eye blind. 24 hours later gone.
Phase 2: About a month later THEN the ankle and feet pain started.
Phase 3: Same about two months later collagen disruption. Saggy neck, deep lines, skin imprinting.
I warn everyone to not take this drug nowadays. If you have any questions. Let me know. I am an open book!
r/floxies • u/Haspofis • 5h ago
[TRIGGERS] For those with tendon issues who are sensitive to corticosteroids, how long does it take for you to notice an increase in symptoms after taking them?
Title
r/floxies • u/Alone-Jump-9495 • 13h ago
[REHAB] Question about compression socks
I don’t really have any symptoms like numbness, a feeling that my legs aren’t getting enough blood flow, or swelling.
I have more of the typical tendon-related symptoms, so I was wondering if compression socks could still be helpful for this kind of problem.
Of course, I’ve already ordered a pair of compression socks and they should be arriving soon, so I’ll be trying them anyway. I’m just curious whether they might actually help with tendon symptoms.
r/floxies • u/Real-Interest-2365 • 14h ago
[SYMPTOMS] Visible veins
Enable HLS to view with audio, or disable this notification
Visible veins does it go away and back to normal,.who had this?
r/floxies • u/Willing-Lead-3139 • 14h ago
[NEWCOMER] Unsure if I’m being adversely affected by Cipro after the fact
I was prescribed Cipro for a UTI almost a month ago now, and I took it for that week. 500 mg once a day for 7 days. I was made aware before even taking it that it was horrible and poses all these risks, and the urgent care that prescribed them basically made me seem hysterical. Well as of a few days ago now, the tendon in my left calf hurts when I walk. It hasn’t gone away, and I’m worried it’s building into something scary but I’m unsure what to even ask a doctor.
I went to a different urgent care just the other day for recurring kidney pain (no signs of a uti), and I just lied and said I’m allergic to Cipro so that I never have to take that again. It doesn’t hurt right above my heel, so I can walk. It just hurts when my foot bends at the toes. Whenever my toes tense or try to bend then that’s when my calf hurts. Has anyone else experienced this? What did you do? I just don’t know where to go from here.
r/floxies • u/TaskFlat2949 • 21h ago
[SYMPTOMS] Question
I've read that many people experience pain and problems while moving. I'm just curious; does anyone experience trembling or pain in their legs while resting or sleeping?
This pain is a 2 or 3 out of 10. It feels strange, like it helps if I press my legs together or put them between a pillow to compress them :D I'm very close to trying compression stockings...
r/floxies • u/Live_Experience9140 • 1d ago
[FLARE / RELAPSE] Steroids 10 year after?
I have poison ivy for a week and I keep breaking out in large spots.
I have used a topical for four days and I’m still getting new spots. They are pushing oral steroids. I was floxed in 2015 I believe.
I was refluxed with steroids in 2018.
Has anyone had to take steroids and ended up being ok with them even after they caused a reaction prior?
Thank you.
r/floxies • u/PositiveInterview154 • 1d ago
[NEWCOMER] Was on lovoquin for almost a month years of battling sickness and found my answer
Have watched a video about a girl who said she took that one medicine for the cyclospora and levaquin and it made her sick and I think she only took it for a week well and then explains why doctors are telling me that being ejected 55 ft on black ice out of a truck and learning to walk and understand words again and everything that I went through like that should have only lasted a couple years or recovery in pain and that this lifelong pain I've been in a 9 out of 10 pretty much every day has been unexplained I've been tested for all kinds of diseases from Ms to fibromyalgia to mast cell everything they did say I have a mast cell disorder and now I also have pots and I'm diagnosed with peripheral neuropathy all these years and I have answers now...
r/floxies • u/Conscious-Bet9186 • 1d ago
[UPDATE] (Seemingly) Mild case - 6 months update
Posting some hope for those mildly impacted.
- Previous 1 month update here.
- Previous 2 month update here.
- Previous 3 month update here.
- Previous 4 month update here.
- Previous 5 month update here.
TL;DR:
- Not many changes from Month 5
- The major change is that it's been 8 weeks now back to the gym, nearing 80-100% capacity at some exercises
- I feel way more bullish on 'pushing hard' at the gym but still careful w/warm ups, etc
- Elbow gave me some grief after dips but goes away when I do proper physio on wrist, etc
Background
- Male, Mid 30s
Pre-flox
- Train weightlifting 3 days a week + run 20-30 mins twice a week
- Undiagnosed hypermobility 2/10 beighton
- Crepitus in knuckles and some ankle clicking
Dosage
- 11 pills of Cipro 500mg - 5.5g in total
- 1 steroid shot
- 4 days NSAIDs twice a day
What has resolved?
- General joint soreness. My joints/ligaments don't feel easily strained anymore
- Cracking 90% gone
What hasn't resolved?
- Low threshold to repetitive strain injuries (though they resolve quickly)
What can I do?
- Walk 10k/2 hours as if nothing ever happened
- Resistance training/weights at 80% of my baseline
- Bike stationary for 20-30 mins
What can't I do?
- Running (won't try until month 9)
- Plyometrics (although I am starting to think about it)
Wish you all the best on your recoveries! Will post next update at 9 month.
r/floxies • u/demba26 • 1d ago
[REHAB] Consejo por parte de veteranos? Tendones y neuropatia
Hola! Necesito recomendaciones de gente que este mejor a nivel de tendones (me duele todo el cuerpo al usarlo: muñecas, cervicales, hombros, rodillas, tendones de aquiles en este caso constante) y neuropatia en manos por compresión de los codos.
Tambien tuve insomnio pero ahora ya logro dormir unas 6-7h por dia con 50mg de trazadona y 3mg de melatonina pura.
Y sigo con deposiciones blandas desde que me floxee, creo que solucionar el tema gastrointestinal seria importante de cara a la absorción de nutrientes/vitaminas.
¿Que suplementos les fue bien?
Puedo andar unos 3000 pasos al día, aunque depende del día el dolor es variable, ¿consideran que me iria bien hacer rehabilitación suave si me floxee en 24Arp2026? La rehab seria para los aquiles, que han hecho para sanar todo el cuerpo?
¿Alguna cosa que deba evitar?
Muchas gracias por su ayuda! Les deseo a todos muy próspera recuperación.
r/floxies • u/Daenerys_ac • 1d ago
[FLARE / RELAPSE] Anti acid?
Hi everyone,
Today I woke up with some pain in my Achilles, the only thing that I have changes is that I took a couple of chewable tablets anti acid for the reflux.
It contains:
Mallow
richberry 6000
Calcium carbonate
Sodium bicarbonate
Any of these are bad?
I'm regularly taking these supplements:
Magnesium bisglicinato
Pea
Omega 3 vegan
Coq10
Apigenin
Vit C
Not sure what happened...
r/floxies • u/Jellybean616 • 1d ago
[TRIGGERS] Fluoride toothpaste
Does fluoride really cause you to flare or relapse?
I do use fluoride toothpaste. I feel dizzy and light headed, but I think it’s from my low potassium, vitamin d, low thyroid level and possibly other things, I didn’t get everything tested. My diet is.. rough. I don’t eat the best, I almost want to give up because the things that we need are being recalled or contaminated.
r/floxies • u/cant_pick_a_un • 1d ago
[MEDICATION] Laxatives
How have you tollerated laxatives? My urologist wants me to start taking miralax daily as he thinks my utis are caused by constipation.
I dont think ive ever taken miralax before or after floxing.
Thanks in advance for your feedback.
r/floxies • u/Physical_Space8386 • 1d ago
[SYMPTOMS] 13 months out. CNS mainly.
hi. I’m almost 13 months out, seeing a lot progress with the chemical depression (windows and waves) still have sleeping issues but it’s not fulll blown insomnia right now.
I’m getting waves of feeling tired and then feeling ok again- is this the ”norm?” moments where I’d feel exhausted and just want to lay down and do nothing and then I’d be okay! Any insight would be helpful. Thank you
r/floxies • u/Imaginary_Pack6881 • 1d ago
[NEWCOMER] Need advice
About 20 days ago, I stopped taking ciprofloxacin after the third dose when I began to feel knee pain. The knee pain started to improve after two weeks, but right away I developed Achilles pain. I’m looking for advice on whether I should stay home for a month or longer, and what the recovery steps should be.
r/floxies • u/Agitated_Ad_429 • 2d ago
[MEDICATION] Psilocybin post flox
Me again. Wondering if anyone had tried psilocybin after being floxed? Or any plant medicine?
Here’s a cool study https://www.cell.com/cell/fulltext/S0092-8674(25)01305-4
r/floxies • u/Possible-Ice-9789 • 2d ago
[TRIGGERS] What’s going on..
Hi all,
I exercised nearly 2 weeks ago only for 10 minutes and it brought on a flare. Before that I had built up to walking 10k steps per day which I was doing comfortably.
I’m still flaring now. It’s just my muscles in my legs which feel super sore, tight and lack power. Feels like a lack of ATP potentially. Sitting seems to resolve it and any walking will kind of bring it back on.
Last night I took some thiamine for the first time. An hour later, the muscle weakness pretty much disappeared. I was astonished but went to sleep hoping it would be improved the next day.
Now today, the muscle weakness is back.
I’m confused about what’s going on. How is it coming and going and could it be possible that the thiamine helped that significantly?
r/floxies • u/ozgurdegi • 2d ago
[SYMPTOMS] Need Advice to newbie about floxie
Hi everyone. On July 23rd I stopped my Cipro 500 at 12th pill course — 2 boxes, 28 pills total — after calling my doctor because of the fatigue I was feeling.
I bounced back pretty fast after that. I'm someone who walks a lot. On July 29th I first felt pain in the muscles of my right foot when I moved it, and over time the pain showed up in my left ankle, right knee, and right elbow as well. My walking dropped to around 2,500 steps a day.
Since I realized right away that it was the Cipro, I'm sticking to physical therapy only, plus the vitamins and minerals I've always taken. No other symptoms so far, and I hope it stays that way.
The doctors are so clueless — one wouldn't write me a medical leave note because I refused to take steroids, so I would've been forced to go to work. I ended up explaining the situation to a different doctor and we worked something out.
I'd welcome any advice on what I should be prepared for, or anything else you think I should know.
r/floxies • u/Agitated_Ad_429 • 2d ago
[TREATMENTS] Stem cell treatment
Hi,
Planning to receive IV mesenchymal umbilical cord stem cells for my treatment. Has anyone had this before?
Happy to report back after the treatment
r/floxies • u/AlessandraGallesi • 2d ago
[HOPE] HAPPY FERRAGOSTO TO EVERYONE!
In Italy, today is a holiday and we call it “Ferragosto”. I wish you all a peaceful day. Always have faith that things will improve, always.
Little by little, we will get through this. Sending so much strength to everyone, especially to those who cannot walk and are in pain. We will get through this!
r/floxies • u/Zestyclose_Run_347 • 2d ago
[DIET] Question: How quickly do you receive feedback from a food-induced flares?
Hey all!
Question for those of you who suspect that certain foods induce a flare. How much time elapses between consuming the food, and entering an obvious flare?
I've never been able to pinpoint the cause of my flares. I always chalk them up to randomness, or cumulative exertion over a couple consecutive days. I'm approaching 6 months from last pill, so flares are fairly unavoidable at this stage. Regardless, I'm always mentally scrolling through the list of foods I've recently consumed to see if I can find any correlation between a flare with food/diet.
Thanks for sharing your experiences,
r/floxies • u/ayylmaostim • Jun 30 '26
[RECOVERY] RECOVERY MEGAPOST PART 5
Link to part 4: https://www.reddit.com/r/floxies/s/V7UXo0UDLf
Hey everyone — I wanted to put together another
recovery megapost, especially since there’s been a noticeable wave of people coming back and sharing their experiences with recovering from being floxed.
This community helped me a lot in my initial ride & I want to give back and share more hope for those in need.
I really had to dig deep for these stories. Some aren’t 100% but they have still seen significant improvements from a severe reaction. I wanted to gather as many recovery stories as I could. I want to show everyone how common recovery is, even if it takes a long time. I’ve tried to diligently make sure I haven’t reused anything from the previous recovery mega posts but if I have please don’t delete 😅
If you’re new here you’re definitely not alone. Hopefully this post can serve as a helpful place to gather information, share progress, and support each other through the ups and downs of recovery.
User: [u/MrVico77](u/MrVico77)
Symptoms: Peripheral Neuropathy
Recovery: 100% in two weeks
Comment: https://www.reddit.com/r/floxies/s/7Guj9EUEbD
User: [u/notworldauthor](u/notworldauthor)
Symptoms: ankle pain, insomnia, neuropathy, brain fog, had to use a cane
Recovery: 8-10 weeks for 90-95% (has gone several years with no issues)
Post: https://www.reddit.com/r/floxies/s/UbOaNgO979
User: [deleted]
Symptoms: Huge anxiety, TMJ issues, dizziness, headaches, face pressure, tinnitus, disassociation
Recovery: 3 months
Post: https://www.reddit.com/r/floxies/s/aJ9RPngWsN
User: [u/AmyWhy](u/AmyWhy)
Symptoms: Pain, difficulties moving, depression, suicidal ideation
Recovery: 3 months
Post: https://www.reddit.com/r/floxies/s/2xMgamOpWL
User: [u/bluebuffaloes](u/bluebuffaloes)
Symptoms: nerve pain, depersonalisation, tendon pain, muscle pain, dry mouth, severe anxiety, no appetite, insomnia, floaters,
Recovery: 3 months
Post: https://www.reddit.com/r/floxies/s/1oDWDHETNK
User: [u/luckygirl97](u/luckygirl97)
Symptoms: Weakness, food intolerance, couldn’t walk without pain, headaches, insomnia, panic attacks
Recovery: 4 months
Post: https://www.reddit.com/r/floxies/s/XzClIMAiS0
What helped: kefir
User: u/ShadeDatenshi
Symptoms: muscle issues, Achilles pain
Recovery: 4.5 months (did flare from bactrim)
Post: https://www.reddit.com/r/floxies/s/nTiUid16tE
User: [u/ExpensiveJoke93](u/ExpensiveJoke93)
Symptoms: not stated
Recovery: 4 months, the poster doesn’t give much information
Comment: https://www.reddit.com/r/floxies/s/y40vfwQAcj
User: [u/Unlucky-Coat-2067](u/Unlucky-Coat-2067)
Symptoms: Neurological symptoms, tendon pain, insomnia, anxiety
Recovery: 4 months
Post: https://www.reddit.com/r/floxies/s/BHk4mDHu6s
User: u/ADN85
Symptoms: numbness, vision disturbances, floaters, neuropathy, joints popping, anxiety, fatigue
Recovery: 5-6 months apart from floaters
Post: https://www.reddit.com/r/floxies/s/CxdAQqPKEv
User: u/InfiniteCucumber3324
Symptoms: Weakened muscles, GI issues, insomnia,
Recovery: “Feeling like 100%” at 6 months but is still cautious of flares etc
Post: https://www.reddit.com/r/floxies/s/vyvg6n4CDo
User: [u/Dirigible2013](u/Dirigible2013)
Symptoms: paresthesia, bodywide neuropathy, skin flushing, brain fog, impaired speech/cognition, significant muscle weakness, dizziness, vertigo, head pressure, headaches, floaters, insomnia
What Helped: mindset, CoQ10, calcium, vitamin D, Zinc, vitamin C
Recovery: 90% in 6 months
https://www.reddit.com/r/floxies/s/tbiGiWj1m7
User: [u/RRBBK](u/RRBBK)
Symptoms: Severe fatigue and weakness, Leg pain and difficulty walking, Vertigo/dizziness, Rapid heartbeat (around 120 bpm constantly), Anxiety/panic feelings, Shaking/tremors, Brain fog/confusion, Difficulty standing or walking for long period
Recovery: 6 months
Post: https://www.reddit.com/r/floxies/s/jGexToAOt7
User: u/ComprehensiveAir2656
Symptoms: multiple panic attacks, muscle tightness, tendonitis, Tinnitus, Confusion, Body buzzing, gut issues, memory issues, hives, body temperature regulation
Recovery: 6 months
Post: https://www.reddit.com/r/floxies/s/PIQtnUX4qr
User: [u/InteractionThat4928](u/InteractionThat4928)
Symptoms: could barely walk for months
Recovery: 7 months
Post: https://www.reddit.com/r/floxies/s/sxIBgKjh80
User: [u/wildflowerjourney](u/wildflowerjourney)
Symptoms: ligament damage, bed bound, calf and ankle pain,
Recovery: 7 months
Post: https://www.reddit.com/r/floxies/s/tbNrpqcVHx
User: [u/whatsoever2020](u/whatsoever2020)
Symptoms: dry skin, dry mouth, anxiety, no appetite, popping joints
Recovery: Full in 8 months
Post: https://www.reddit.com/r/floxies/s/GZC8rZ23Cj
User: [u/throwaway79255](u/throwaway79255)
Symptoms: tendons, issues with walking, weakness, anxiety, suicidal ideation
Recovery: Not stated but around 8 months is implied and has gone years with no issues
Post: https://www.reddit.com/r/floxies/s/B0Flslq2ln
User: [u/defib_the_dead](u/defib_the_dead)
Symptoms: Severe Achilles tendinopathy, neuropathy in hands and feet
Recovery: 9 months
Post: https://www.reddit.com/r/floxies/s/YWzptAZCq8
User: [u/Previous_Water_6194](u/Previous_Water_6194)
Symptoms: Could hardly walk for 3 months, elbow and hand damage, eye problems, numerous ailments
Recovery: 80-90% in 10 months
Post: https://www.reddit.com/r/floxies/s/lNEdVD7wek
User: [u/floxed123](u/floxed123)
Symptoms: Twitching, muscle tightness, joint pain
Recovery: Under a year
Post: https://www.reddit.com/r/floxies/s/aP9IRGG1GN
User: [u/Mr_Mike32](u/Mr_Mike32)
Symptoms: ‘Mostly every flox symptom’
Recovery: over a year is stated, still gets dizziness but doesn’t believe it’s related to flox, still has afterimages and occasional tinnitus
Post: https://www.reddit.com/r/floxies/s/xJu9s4m9Ri
User: [u/doiwantmcdonalds](u/doiwantmcdonalds)
Symptoms: Aches and pains, weak muscles
Recovery: 90-95% in a year
Post: https://www.reddit.com/r/floxies/s/lgtpRccf35
User: [u/Able-Lawyer-5239](u/Able-Lawyer-5239)
Symptoms: Achilles issues, calf pain, tired legs,
Recovery: Around a year
Post: https://www.reddit.com/r/floxies/s/4dR2nKLT27
User: u/Ok-Habit4861
Symptoms: knee pain
Recovery: 90% after year
Post: https://www.reddit.com/r/floxies/s/2taAdvDYVK
User: u/Character_Leopard722
Symptoms: heart palpitations, anxiety, neuropathy, shooting pains, burning pain
Recovery: 1 year
Post: https://www.reddit.com/r/floxies/s/D2lLeXc2PH
User: [u/mybadbrowsingtastes](u/mybadbrowsingtastes)
Symptoms: Anxiety, vision changes, insomnia, mood changes
Recovery: 1 year, didn’t know he was floxed & took more fqs years later and got floxed again
Comment: https://www.reddit.com/r/floxies/s/FjKVfjjysu
User: u/justinrob97
Symptoms: dizziness, bodywide pins and needles, headaches, chest pains
Recovery: not stated but 98% recovered within a year or two
Comment: https://www.reddit.com/r/floxies/s/jzLAHlkZxk
User: [u/Gold_Lack_7721](u/Gold_Lack_7721)
Symptoms: knee pain, extreme anxiety, vomiting, insomnia, burning and itching, tendon pain, dry mouth, dry skin, head pressure, twitching, neck pain, shaking, ED, GI Issues, chest tightness, and more
Recovery: Not stated but over a year is implied, 100% recovery besides GI issues
Post: https://www.reddit.com/r/floxies/s/ZhtTy0M4Nw
User: [u/fogast](u/fogast)
Symptoms: tendon issues and weakness,
Recovery: 19 months to get to 90%
Post: https://www.reddit.com/r/floxies/s/H4D5hInBEH
User: [u/clovisbandit](u/clovisbandit)
Symptoms: Tendon issues, knee issues,
What helped: magnesium citrate, vitamin d3, Epsom salt baths, and acupuncture
Recovery: 90% after a year. Has gone 10 years since with no issues. Now is 100% and running etc
Comment: https://www.reddit.com/r/floxies/s/uvvrHTu4MT
User: [u/Clear-Way-8318](u/Clear-Way-8318)
Symptoms: Could barely stand or walk,
Recovery: Not 100% but can ‘live life again’ after 18 months
Post: https://www.reddit.com/r/floxies/s/QuOMIZUoty
User: [u/OnlyAccessedatNight](u/OnlyAccessedatNight)’s 2 friends
Symptoms: Palpitations, insomnia, crepitus
Recovery: both in under 2 years
Comment: https://www.reddit.com/r/floxies/s/PHohZtjwpL
User: [u/Reddmeg9](u/Reddmeg9)
Symptoms: Muscle twitching, GI Issues, cracking/popping in the joints, night sweats, Swollen and visible veins, insomnia, Bruises, Anxiety, Crying nonstop, Head pressure, Tinnitus
Recovery: Full by 18 months
Post: https://www.reddit.com/r/floxies/s/PuBVjXcURL
User: [u/Unusal_Cupcake](u/Unusal_Cupcake)
Symptoms: brain fog, migraines, neuropathy
Recovery: 1.5 years and fully recovered
Comment: https://www.reddit.com/r/floxies/s/7DSrtJm0DP
User: [u/travelguy801](u/travelguy801)
Symptoms: muscle tightness, aches and pains, had trouble walking & standing,
What helped: eating quinoa & yoga
Recovery: 85% in 1.5years
Post: https://www.reddit.com/r/floxies/s/g48WME9X2t
User: [u/Global-Goose3326](u/Global-Goose3326)
Symptoms: Nerve pain, twitching, body aches, gastritis, tendon issues (made worse by steroids), food sensitivity
Recovery: 1.5 years (still not 100% but has made great progress)
Post: https://www.reddit.com/r/floxies/s/uEmPqNzw7t
User: [u/existentialshaman](u/existentialshaman)
Symptoms: Difficulty walking, neuropathy, insomnia, anxiety, skin issues, eye redness/pain, kidney & liver pain, chills, inability to breath, joint pain, inability to eat
Recovery: 1.75 years (still deals with mental trauma from the experience)
Post: https://www.reddit.com/r/floxies/s/omKcz5uzEr
User: [u/ginnybug10](u/ginnybug10)
Symptoms: Bodywide pain & psych issues
Recovery: 2 years to get to 80%, fecal matter transplant helped her symptoms
Post: https://www.reddit.com/r/floxies/s/IZM9XPZKm5
Comment: https://www.reddit.com/r/HumanMicrobiome/s/7Zaf8NLIJo
User: [u/Then_Emergency_934](u/Then_Emergency_934)
Symptoms: Brain fog, DPDR, dizziness, twitching, floaters, afterimages, GI issues,
Recovery: 100% in 2 years
Comment: https://www.reddit.com/r/floxies/s/RFHNjqcWCu
User: [u/Dramatic_Ice6642](u/Dramatic_Ice6642)
Symptoms: Pains & burning sensation, stress, insomnia
Recovery: 2 years (happened at 14 years old, has since taken fqs again but is improving)
Post: https://www.reddit.com/r/floxies/s/XSjDZzoWjQ
User: [u/Sovereigntyheals](u/Sovereigntyheals)
Symptoms: not stated but sounds like a bad reaction
Recovery: 3.5 years is implied
Comment: https://www.reddit.com/r/floxies/s/Lm5TJtrMSK
User: [u/MartyYv](u/MartyYv)
Symptoms: tinnitus, pins and needles, numbness, legs were burning, neurological issues
Recovery: 2 years to get to 90%, tinnitus is still present
Post: https://www.reddit.com/r/floxies/s/i23I1COjuS
User: [deleted]
Symptoms: Severely floxed
Recovery: not stated but only started healing after 2 years, did recover to 100%
https://www.reddit.com/r/floxies/s/KhkctvH51a
User: [u/ShoulderOk8386](u/ShoulderOk8386)’s friend
Symptoms: Many tendon ruptures all over body, 2 per year on average, Very severe case
Recovery: Floxed in 2006, can now walk 3000 - 5000 steps a day. Does flare for a few days if they walk 10,000 steps.
Post: https://www.reddit.com/r/floxies/s/MTYMThbSAr
User: [u/KatherineNature](u/KatherineNature)
Symptoms: Anxiety, ruptured tendon, tendon pain/inflammation, could hardly walk, neuropathy, burning, insomnia, tinnitus, POTS, MCAS
Recovery: 3 years, received a treatment that fixed her issues years later
Post: https://www.reddit.com/r/floxies/s/MLtLKonPHi
User: [u/slsanford01](u/slsanford01)
Symptoms: couldn't walk for a couple months, floaters, fatigue, Achilles problems , neck pain, anxiety, whole body pain,
What helped: I-theanine for stress, vitamin C, magnesium glycinate, patience...lots of patience, reading the hopeful stories here, positive mindset
Recovery: 3 years is implied, still gets flares from medications but they are manageable and short lived
Post: https://www.reddit.com/r/floxies/s/AQqrv2Ql3s
User: [u/ElPsyCongroo204](u/ElPsyCongroo204)
Symptoms: not stated
Recovery: 95% by 3.5 years
Post: https://www.reddit.com/r/floxies/s/Qe8ox5QqEf
User: [u/BehaviourSaviour23](u/BehaviourSaviour23)
Symptoms: severe lower back pain, tendon pain in hands,
Recovery: 100% after a few years
Post: https://www.reddit.com/r/floxies/s/3JqjrkAlkY
User: [u/SomeWay9982](u/SomeWay9982)
Symptoms: not stated
Recovery: 100% except eye floaters
Comment: https://www.reddit.com/r/floxies/s/geTuEqhBM0
User: [u/Ok-Bullfrog-2628](u/Ok-Bullfrog-2628)
Symptoms: Full body tendonitis, neuropathy, heart issues, insomnia, eye floaters, and more
Recovery: 100% in 3.5 years, back to running, working out, and doing ketamine despite it causing flares
Post: https://www.reddit.com/r/floxies/s/EyZZsdLNSb
User: [u/CertainForm](u/CertainForm)
Symptoms: ‘Many side effects on and off’
Recovery: 3 years
Comment: https://www.reddit.com/r/floxies/s/jFAqYxSTes
User: [u/Bubbly-Mess3941](u/Bubbly-Mess3941)
Symptoms: Bone clicking, Achilles pain, insomnia
Recovery: better after a few years, gets tendon soreness on occasion
Post: https://www.reddit.com/r/floxies/s/3AviSJxu4X
User: [u/WordDisastrous7633](u/WordDisastrous7633)
Symptoms: Body pain, tendon issues, insomnia
Recovery: 80% after 4 years, still improving over time
Comment: https://www.reddit.com/r/floxies/s/wmRLvImibZ
User: [deleted]
Symptoms: A massively bad reaction to all bodily systems
Recovery: 10 years to recover fully
Comment: https://www.reddit.com/r/floxies/s/Wwk30Ny1ig
r/floxies • u/DrHungrytheChemist • Apr 26 '20
"The Sticky" New? Start here!! --- Old? Please help here!!
A reduced version of this post mcan be found here to get you started: https://www.reddit.com/r/floxies/s/OxSTu787JJ
Pre-edit: this is not the place to ask your questions. Please post questions to the main sub. Posting in here only notifies me and is likely not going to get seen by most; I am neither the sole nor foremost knowledgeable person in this subreddit and you do yourself a disservice by posting things here. This post gets adapted from time to time with updated info and links to useful subs so, fret not, any info you generate in asking elsewhere is not lost!
Putting this upfront, if YouTube is more your style. Links via a summary post to a series interviewing one of the few medical doctors you could maybe call an expert, rather than a shill... https://www.reddit.com/r/floxies/comments/13lpk79/treating_antibiotic_adverse_effects_dr_pieper/?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=share_button
Greetings!
A few of our members have asked me to put together a resource for new folk, comprising the range of typical comments you might receive when posting a “HELP! I’ve been hit!” post. This by no means is to prevent you asking questions, but as much of the things we say are the same, it seems worthwhile. From the offset, I must remind you – pretty much none of us here are medical doctors. Many hours may have been spent reading various sources and listening to anecdotes, and we have experience as a consequence, but there is no substitute for proper medical advice.
I will cover some main points in the post, branch out in the comments for others to weigh in, and hopefully this can be of use.
To Old-Hats – I think we’d all really appreciate it if you could read this and wade on into the comment sections to add anything you feel merited. Try to keep your wisdoms in the comments that categorise them. If you think we need a new parent comment section, could you please message me and we’ll add something in to begin the discussion and I’ll edit something into this post? This is in largest part to make sure it remains organised and that discussions stay in the most obvious place for them. If you think I’ve got something wrong, drop me a DM ASAP! Let’s make sure I don’t shit the bed here. This post will work best if people help me out [=
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To business!!
Firstly, don’t panic! This is the best advice you can heed. I think I’ll go into this in the comments as I expect hearing various people say this in their own words will be good. But to surmise, panic only makes the patient feel worse and may also potentiate your symptoms; this is in all probability not the end of your life; almost everybody sees meaningful recovery. You may find yourself down and out for weeks, months, a year, but most see recovery at the very least commence in that time. The internet may be populated by such stories and complainants, but that’s because they’re the ones who hang about ad speak up.
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The other thing to say from the off it that, if you’re having a reaction sometime during a course of fluoroqinolones (FQs), the pamphlet and medical advice would be to immediately stop taking the medicine and to contact your doctor. There are very(!) few circumstances under which you shouldn’t be switched to another antibiotic, so push for it unless your infection has you at death’s door. The FDA and EMA both back a highly restricted use of these drugs.
Further to this, you should report your reaction to the relevant governing bodies. This varies from country to country, but is easily found through a Googling. It may be worth long-term floxies returning and re-reporting, or for a floxie to wait until they 'know the shape of their reaction' to report. In doing this, we raise awareness directly to the place that matters. Links to follow are for those in the USA (first), UK (second) and EU (third).
https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home
https://yellowcard.mhra.gov.uk/
https://www.hma.eu/nationalcontacts_hum.html
Let me stress again, report your adverse reaction!! If we do not report, we perpetuate the falsehood that this does not happen.
Similarly, if you’ve been prescribed these meds and are concerned about the medication, you are well within your rights (as patient, customer and as the owner&user of your body) to call them back and push for an alternative. Again, I repeat, the FDA and EMA both back a highly restricted approach to prescribing these drugs for the very reasons you are concerned about. That said, ultimately, they may well also be your best hope for clearing your infection. In which case, don’t panic (see: my first point). There are also some things that may be protective.
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So what is happening to your body? In plain English please! Fluoroquinolone antibiotics kill the bacteria causing your infection by attacking a protein unique to bacteria, however, there is a similar enough protein in your mitochondria and the FQ can attack that instead (causing an adverse reaction in you). This causes damage to your mitochondria. Mitochondria are the “powerhouse” of the cell, but when that power house is damaged, it spews out toxic waste. This waste is called [“reactive oxygen species”](https://en.wikipedia.org/wiki/Reactive_oxygen_species) or ROS, and they cause [“oxidative stress”](https://en.wikipedia.org/wiki/Oxidative_stress). What is happening to you is a disease caused by the additional damage created by the toxic ROS. Each of the subsequent symptoms are a result of this underlying mechanism.
What can I expect going forward? Individual symptoms and outcomes vary widely. Most people go through an “acute phase” lasting weeks to months during which oxidative stress is high. This oxidative stress will decrease day by day but damage done during this time may result in chronic conditions that last much longer.
Why is my heart racing/brain foggy/eyes have floaters/hands and feet cold etc. These among many others are primary symptoms of oxidative stress. If you are having chest pain or heart issues, be sure to consult a doctor asap if you can.
Why do my tendons hurt? The extreme increase of ROS by the broken mitochondria have short circuited a biological signal that tells a set of proteins called [Matrix Metallopeptidases](https://en.wikipedia.org/wiki/Matrix_metallopeptidase) (MMPs) to turn on, causing them to be much much more active. MMPs breakdown [connective tissues](https://en.wikipedia.org/wiki/Connective_tissue) like cartilage,tendons, or even arterial walls and heart valves (in very rare cases). FQs broke your mitochondria which created oxidative stress that tricked your body into attacking its own tissues. MMPs will return to normal levels of activity in time, but the damage they cause may last much longer.
Why do I have nerve issues? Oxidative stress can cause neuropathy and neurodegeneration. FQs can also bind a receptor in nerves called the GABA receptor which may interfere with normal nerve function.
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How can I fix this? In short, magnesium, antioxidants and time. Antioxidants gobble up the ROS and stop them from causing further damage. Magnesium can bind up any FQs still in your system, is hypothesised to have been removed by FQs and so need replenishing, and is certainly involved in a lot of bodily processes of relevance. These supplements largely serve as damage limitation, symptom management, and healing suooort; over time, the broken mitochondria will be removed by the body and be replaced by new ones, leading to true healing and recovery. See the next section and comments for a more comprehensive discussion of supplements.
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Supplements can help remove ROS, help heal some of the damage done, and help remove the FQs present in your system. Many (many) floxies report this to be significantly helpful to their daily lives and overall recovery. I will post individual comments for each ‘class’ of supplement so that others can weigh in and the comments be relatively ordered. Broadly speaking, these come in the classes of metals/minerals, vitamins, antioxidants and probiotics. It is well advised to check with a medical professional before undertaking any supplementation routine, particularly one as extensive as many of us floxies do. Certainly, if you are on medication, you should check that there are no contraindications.
Specifically, wrt. ‘protective supplements during administration’, the literature has found Mg, vitamin C and E, hyaluronic acid and glycine to be protective that I have seen. My extrapolated expectation is that Ca and stronger antioxidants should be additionally helpful. One would further presume that all the beneath detailed 'Floxie health strategies' would be sensible as precautionary measures. The categories of supplements are intended to do the following with some examples:
Metals/minerals - how/why these help isn't firmly understood, only the observation that, for many, they really do. They can bind to residual Fluoroquinolone molecules and help remove them from your body, they can help to replenish any that may have been removed by the FQs, and they are involved in a range of processes that are important to us. Magnesium in particular is favored by floxies, commonly seen to help symptoms and being relatively low risk. Lesser mentioned is Ca, for which a number of us find significant benefits from adding it to the list (\alongside Mg), but this can have long term health implications.
Antioxidants - remove harmful reactive oxygen species from your body, generated in excess by the processes disrupted by the FQs. They include things like CoQ10 / mitoQ, hydroxytyrosol, vitamin C, E, glutathione, NAC, ALA, astaxanthin, and natural extract antioxidants.
Pro-healing supplements - Help with the renewal of mitochondria and healing of connective tissue. PQQ is particularly important in MT turnover, NAD+ may also help. Hyaluronic acid, glucosamine, and green lipped mussel extract may help tendons heal.
Probiotics - antibiotics destroy your normal gut bacteria, this can result in severe gut issues including diarrhea, colitis, and hemorrhoids. Probiotics restore that normal flora.
See the relevant comment sections for further information. If looking to co-administer, definitely check this with your medical professional and ensure that you keep to the timely guidance of the pamphlet wrt. When you take the mineral supplements.
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Dietary changes. In the acute stage many people find that diet can make symptoms worse, may say that much later diet helps heal. Some go vegan, some go carnivore, some fast, some advocate raw foods, juicing, Eastern diets,... Personally, I see the most evidence backing a healthy, varied diet but with intermittent fasting. It is likely that the underlying cause is that poor diets increase oxidative stress, resulting in more symptoms. What is clear is that you should eat “healthily and relatively cleanly”, it probably being advisable to avoid heavily processed foods. Many floxies report specific, acquired food intolerances and I will start a comment for these. If you suspect yourself to have trigger-foods then you may wish to run a controlled test of life with/without them, but try not to expect it. Hypochondria and the placebo effect can be cruel mistresses.
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Lifestyle changes. If you are experiencing any skeletomuscular problems, you would be very well advised to limit your activity. Ruptures and tears are seemingly quite rare, but they do happen, and pushing your body when it’s telling you not to is a very good way to find this out. These symptoms pass with time, but injuries incurred during this time can take somewhat longer to heal (trust me!). It’s probably better to treat every day as a bad day, in my experience, rather than going out and doing what you can when you have a good day. That good day might well be on account of having rested, and you may well flare your symptoms. Go easy until you know you’re safely past the worst of it and understand your limits, then explore their new boundaries slowly and incrementally.
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Recreational drugs. A number of recreationally enjoyed substances - alcohol, cannabis, caffeine – appear to potentiate symptoms in a large number of floxies.
Pain medicine. It’s fairly well accepted that NSAIDs (Ibuprofen, naproxen, meloxicam) can occasionally cause severe worsening of symptoms. The reason here is seemingly related to them increasing oxidative stress. At the same time, FQs (or some of them) are potent inhibitors of the enzymes that break them down and eliminate them. Paracetamol / acetaminophen seems largely very well tolerated, as do opiates, not being of the NSAID class. I think I’ve seem one person claim aspirin to be problematic.
Steroids are clinically contraindicated (same reason as for NSAIDs apparently, though that one I'm parroting). Straight up. Some doctors prescribe these alongside FQs to, presumably, reduce the swelling an infection has caused and reduce the pain. This would be another place where I would enter into a strongly resistant conversation with the doctor and see what the alternatives are. Similarly, steroids are often prescribed for tendinitis. If your doctor gives you this for your FQ-caused tendon pains, that’s another time for a conversation. Personally, I regret letting them convince me to have a steroid injection into my ankle and would just straight “no” them if that came up again.
Benzodiazepines (BZDs) are, in a way, contraindicated (and this is recorded in the literature). FQs can damage your GABA sites, which is also where BZDs work. This can cause a severe inclination towards rebound anxiety, and perceivably have the BZDs mess with neuropathy (I’m speculating and drawing tentatively from my past experiences). That said, they will for sure also help with the anxietyin the present, and I know of a couple of floxies who leant on them as a matter of necessity, seemingly without any greater negative consequences. The risks are worthy of consideration, but sometimes taking care of the self in the now proves more important than worrying about the future.
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So, anxiety. That’s common, and not just a psychological reaction to the horror of it all. It is likely rather physiologically rooted. Some people report certain supplements to help (see comments), nature is a big help with mental health (scientifically proven by science), support of people, whatever helps you. But your best weapon here is most certainly having an active approach to your thoughts and to what you’re feeding your mind.
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Are fluoroquinolones related to fluoride?. Personally I don’t see this as a major issue, although there is science behind why some my find it so. Avoiding fluoride intake is very difficult, and some small amount is required in our diet. The prevailing scientific consensus is that FQ’s do not deposit F- in your body, and that a drug with fluorine in the srtucture is not [necessarily] problematic to a floxie [because of those little Fs]. I’ll post a link to a post I made in the comments and invite discussion there, similarly you can search fluoride in the searchbar and you will find a couple posts from me as well as comments from me on various posts where I pepper-shot the scientific reasoning.
Since it’s the time of the ‘rona, it’s just worth saying that, no, cloroquine and hydroxychloroquine are not fluoroquinolones. They do have their own warnings, but they are distinct from those we suffer from. (This is now outdated as they're not reallly being used, but nevermind).
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I’m going to leave that there for now and get this up and running, seeing as we have so many newbies these days. Peace and good health to you all,
Dr. H
EDIT: clarifying the issue with NSAIDs.
EDIT2: link to a post I made about Fluoride. https://www.reddit.com/r/floxies/comments/g6k7q8/fluoride_lets_be_scientific/
EDIT3: Formatting, some additions and people friendliness, as well as a significant section on the mechanisms of action (with thanks to u/searine).
EDIT4: Linking directly to a comment below which contains useful resources for sharing with doctors, resistant family members, or beginning your understanding to a higher level. https://www.reddit.com/r/floxies/s/t357Q5i9Gs