*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
So, 4 months after my terrible reaction to Cipro, I can honestly say that I’m recovered. It’s pretty amazing because I didn’t know if I’d ever feel normal again. I’m aware that I’m very lucky, and I feel for anyone still suffering, but wanted to share that there is hope for us all.
As I said, I’m very lucky, very blessed, and healed faster than most. I thought it would be important to share a recovery story with Lisa that might give hope to those that are newly floxed – Healing can happen quickly, too! Not everyone suffers for years!
It’s hard to gauge how hard I was hit, because there are a number of those on the facebook groups who seem to be much worse off than I was. However, for some perspective, here are some factors that played a major role in how bad I was.
- When I was floxed, I was only one month out from quitting a very high dose of benzodiazepines cold turkey. Benzos and FQ’s are contraindicated because of the GABA-A receptor displacement.
- I was also on heart medication (and still am, though a lower dose), which is also contraindicated with FQ’s.
- I took a lot of NSAIDs (Aleve) while also taking Cipro, unknowing that they shouldn’t be combined.
So, I got hit with a trifecta basically.
I was prescribed 500 mg twice daily of Cipro for a “suspected UTI,” on April 2nd, 2013. Turns out I never had an infection in the first place. My reaction was immediate; within 24 hours I had a heart rate of 120 that wouldn’t go down for about 8 weeks. My symptoms were as follows:
- Tachycardia
- Panic/Anxiety/Depression
- Hallucinations, both visual and aural
- Partial tendon tear in my achilles
- Tendon and muscle pain that traveled randomly
- Hair loss
- Weakness and fatigue
- Confusion and brain fog
- Joint pain
- Depersonalization and derealization
- Gastro-intestinal distress – alternating diarrhea and constipation
- Memory loss
- Tremors and shaking
- Terrifying nightmares
- A crazy itchy rash that developed just under my belly button
- Significant weight loss
For any doubters of how bad it was, I was suicidal. Suicidal enough that 2 weeks after my floxing, I was locked up in a mental institution for 5 days, where they tried any number of different psych drugs on me. The whole experience was surreal. Upon my release, I spent the next 6 – 8 weeks or so searching desperately for some kind of relief to my condition. Admittedly, I tried a number of things that really did not provide any resolution, and probably made me feel worse in the long run.
This is the section of my story that some may find unappealing, and I don’t want anyone to take it as bragging or boasting. If something works for someone else, stick with it.
I tried a million supplements. I don’t think I noticed any difference from pretty much any of them. Seeing as I spent the money on them, I certainly kept taking them until they were gone. Magnesium didn’t seem to make a difference. Fish oil didn’t seem to make a difference. COQ10 didn’t seem to do anything. Milk Thistle didn’t do anything. Condroitin/MSM didn’t make a difference. Probiotics didn’t seem to make much difference.
Nowadays, I take some Vitamin C, a B-Complex, extra B12 and Vitamin D. That’s it.
I tried the Specific Carbohydrate Diet, and it unfortunately wasn’t right for me. I know it’s gotten great results for others, but I was already drastically underweight, and I continued to lose weight on it and got even more depressed. I gave it a solid month of dedicated effort. My wallet, my spare time and my BMI all took a pretty bad hit from it.
Believe it or not, smoking cigarettes helped immensely. It gave me something to do to break the monotony. It helped ground me in reality. I’m down to about 1-2 smokes a day, but was at a point at a full pack a day.
A few other things that helped were: An absolute resolve never to give up, even when I was hospitalized. I also refused to stop working, to stop driving, even when I messed up my ankle. I limped around my warehouse like a gimp for weeks. I used cruise control on my car to avoid having to press the pedals too much. But I absolutely refused to let this thing ruin me. I woke up at 5 a.m. and put in 12 hour days at work. Fake it til you make it. I made it. An important decision I made was also to stop blaming FQ’s for everything wrong in my life. Yes, they screwed me up majorly, but I had to stop living in fear of everyday life, of antibiotics in food, of fluoride in water, of chemicals in shampoo, etc…
Nowadays, things are as they were before. I have a lingering floater in my left eye, but then again, I would occasionally get floaters before I was ever floxed. They always went away, and I have faith that this one will too. I have a little lingering tinnitus, only noticeable before I fall asleep. Same story though, I had tinnitus before this whole mess as well.
Physically, I can do whatever I want. Endurance has been regained. Aside from all the weight I’ve lost, no one has any reason to question my health. I’ve also put back on about 15 lbs, and am back to my target weight. I was overweight before anyhow.
All of this happened in the span of 4 months. It’s hard to believe. The real turning point for me came about a month ago, but I wanted to wait at last an extra month to ensure that I was really making progress, and I have.
My heart goes out to the still-suffering. I truly believe that a positive mind-set can make a world of difference. I hope everyone makes a full recovery!
December, 2015 update – “Hi Lisa, I’m one of the first people to have a story posted on Floxie Hope, nearly 3 years now. (James’ story). It’s been a long time since I thought about my floxing experience (I try to avoid thinking about it too much, since it was the worst experience of my life…) But recently a friend was prescribed Cipro for colitis and with my help was able to ask his doctor for Zithro instead, and that reminded me to check on the floxie community. Just wanted to update everybody that I’m doing better than ever nowadays. In my story, I think I said I was 100% after 4 months, but it was actually more like 8 – 9 months before most everything with me got back to normal. Now at nearly 3 years out, I’m in the best shape of my life. Running Spartan Races and triathlons and such. My heart goes out to anyone who’s still suffering! Keep fighting the good fight!”
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Either you have the immune system of an ox , or you are one of the luckiest men alive.( reading through this again I think maybe it’s the latter ) I’m interested in the names of the psych drugs they prescribed you, ? and how your weakness affected you ,what type of weakness did you experience ?
Lastly I was wondering if you have ever been prescribed a fluoroquinolone any time in the past ?
Please make sure you NEVER take another fluoroquinolone antibiotic again in your life,not even one pill, with what you have explained above, I’m not so sure that you would be so lucky next time.
I am so very pleased that you have recovered, It is so refreshing to hear positive news, and gives hope to us all, that things CAN get better.
James how are you doing today? Has anything popped up? Interested to hear about yout current thoughts.
Your story gives me lots of hope. I’m at just about two months out and doing pretty well. It’s easy to get scared that things will suddenly get much worse, of course. But your story shows that, despite set backs that undoubtedly will come again, I really could kick this thing in less than a year or two.
FQ’s cause a huge functional deficiency of magnesium. Some people can get better with just the magnesium they get from food, but I plan to keep supplementing Mg heavily for at least half a year. So long as it doesn’t make me feel worse, I take it. Sometimes I don’t need it, but most days I do. I’m getting good at listening to my body. I sympathize with your psychological symptoms. I had those pretty bad too, along with a sympathetic nervous system on overdrive. At first I couldn’t focus on anything without it causing my heart to race and my blood pressure to skyrocket. I was just flooded with adrenalin. That’s getting better. Sleeping can be difficult. My left Achilles’ tendon is not good. But for the most part I’m functional and living my life at just two months out.
I am at 3 1/2 months now with the real flox symptoms. I noticed a few as far back as September but it really did not kick into gear until Jan 1st. Was a real mess. I have made improvements, mostly by doing nothing, no supps, no oils no nothing. But I still have periods of relapses and my joints legs still hurt a good bit on days. Sill ahve lots of symptoms but all are a 1 or 2 on the scale. Glad you are well.
how you doing james
How are you doing now James?
Anyone know how James is doing now?! What is James Age? And did his mental state go back to completely normal?!! Gives me such hope if he beat it that quickly!! I’m almost 3 months out! Praying for a miracle…need to beat this nasty medication!!!
he never ever mentions anything he takes to recover what kind of post is this is he playing with a full deck of cards or what? What recovery method?
James please tell me how are you now does Dp fade away completly cause i am suffering from derealuzation n depersonalization for cipro im too scared if it wont go away im just going insane everything is just like a movie please help me :(((
please anybody somebody help me please reply :((((( james please come back help meeee
Hi irin,
I am a very long term survivor, of FQ toxicity having been floxed 7 times over many years I have experienced many of the neuropsychiatric symptoms the depersonalisation/ derealisation although I know it is cold comfort for you right now irin, these symptoms will eventually go away but they can take quite a while to do so . I do not know of anyone personally of which these type of symptoms have become permenant & I have been in this world for a very long time.
I am also a long term psychiatric survivor because of the FQs unfortunately my neuropsychiatric symptoms also included toxic psychosis & unfortunately I was misdiagnosed & the psychotropic drugs then cost me the next 12 years of my life. as result I have done years of research on them & would just like to say be very careful in respect of treating this with allopathic psychotropic drugs. You are NOT insane your brain has literally been poisoned by the FQs, & this is the brains natural reaction to being poisoned it is the brains only way of protesting.
Are you able to post in the main part of this site as there are many more people there including myself who can help & give advice & reassurance on these symptoms . This happens to so many of us , but please believe me you are not floridly psychotic or developing schizophrenia , if this were the case you actually would not be asking this question, as true florid psychosis is lack of contact with reality. I have had a lot of experience of floxing been floxed 7 times. & myself when I developed toxic psychosis from FQs I did not know who I was let alone know to question whether I had it. Toxic psychosis & also the derealisation / depersonalisation you are experiencing is in fact organic brain injury & you are NOT going crazy. If you click on home you should be able to access the main part of floxiehope Irin. I have had a lot of eye pain & have to stay offline when this happens, so I have been offline for a day, sorry I could not reply sooner
Neuropsychiatric ADRs / symptoms are extremely common in FQ toxicity . Please consider coming to & join us in the main commenting section here on floxiehope Irin, as there are many more people who can help there, we support each other, there are many things people try for the various symptoms & discuss there, many of us suffer / have suffered the derealisation issues, & knowing others are experiencing this you probably would not feel so frightened or alone . As I stated before these sort of symptoms related to floxing generally resolve over time, but as with many symptoms of FQ toxicity they can take a long while to get through. You WILL get through this Irin.
Hi Irin
Please do not despair. I have felt like this as well.Debs is right It does ease ..
As silly as it may sound and I have only just discovered this within the last few days because I have had to b very careful about what I ate and eat but I found eating an orange very
helpful.
The way that I look at things is this. If eating an orange/Satsuma/tangerine or anything else can make me feel a bit better then what does it matter if it simply due to the placebo effect!!!
I have also fund that I crave diifferent foodstuffs on different days .
Why this is so I do not know.
I think that the thing is to eat little and often. IMO that way the brain/mind does not feel a sense of deprivation.
I have found that going without any nutrients leads to a sense of deprivation and loss even grieving.
Even grabbing a pint of milk if one is allowed to have it of course can help to manage the low blood sugar which may be triggering off a state of anxiety and depression due to deprivation of nutrients to the brain.
Going without carbs is also not recommended as this can lead to or enhance anxiety.
Vitamin C is known to help people with Ehlers Danlos Syndrome plus B12 Vit D3 B vitamins also help…I was also recently diagnosed with BPP Vertigo I was told to take Olive Oil 10 days then they drained flushed my both ears out now I am starting maneuvers to put the Crystal back in place…I will also be seen by EDS Experts in London soon I will of course mention Floxie antibiotics use to them…Belgian team just recently found Genetic markers for Hypermobility types it now needs to be replicated it was found in 3 family generations…I wonder if antibiotics could be triggering Ehlers Danlos in patients I have seen countless go decades without being properly diagnosed all the symptoms are 100% identical to these antibiotics theories…
irin or mark you guys still out there? dan.
Hi, I was put on Ciproflaxin in August and have had joint problems ever since.Last week ,I could not walk and had to use a walker.Does anybody have any advice that would help me.?
I see a physio who encourages me to move even if in pain. Easier said than done but it works. He says to me if you don’t use it you lose it.
I also have joint pain caused by these fluroquinolones and other abs. I have peripheral neuropathy.
Magnesium has helped a lot of people as well as Omega 3 and Vitamins D3 and B co.
Hang on in there. People do recover but tendon damage takes a longer time to repair.
You are a warrior. This has given me the most hope thanks for the update. Healing is possible!! 4 months out myself and i feel the worst is behind me. Stay possitive everyone we are alive!
jimmy, what were all of your symptoms dan?