*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.
I became a “floxie” in November of 2012. At the end of October, I began to have symptoms of a UTI. I had never had one before, but I was familiar with the symptoms. Unfortunately, hurricane Sandy hit just as my symptoms peaked and I couldn’t be seen by my doctor for a couple of days since no one had power. When I finally did get in to see a doctor, she listened to my symptoms, took a urine sample and started me on 250 mg of Cipro daily. I had never heard of Cipro, but didn’t think twice about taking this antiobiotic since I’d taken other antibiotics before and prided myself on the fact that I never had any adverse reactions. Not even an upset stomach.
The urine culture came back negative a few days later. I was told to finish the 7-day course of Cipro and an appointment was made for me to see a urologist in two weeks. By the time I saw the urologist my symptoms had subsided somewhat, but not completely. I wasn’t feeling any side-effects from the Cipro at that point. The urologist decided a had prostatitis based on my symptoms and prescribed another course of Cipro. He said, “Your GP had the right idea, but wasn’t aggressive enough.” This time I was to take 500mg twice a day for 6 weeks! By the time Thanksgiving rolled around I was starting to have mild flu-like symptoms which gradually got worse. By mid-December, I was having trouble walking, all my muscles and tendons ached, and my joints were freezing up. When I started having difficulty typing (I’m a software engineer so this was a big problem), I knew something was wrong and went to see my doctor who (looking very nervous) told me to stop taking the Cipro immediately.
For about 2 months thereafter these symptoms remained and new ones appeared: gut-wrenching heart palpitations and “inner vibrations” that constantly woke me up, confusion, anxiety, hypochondria, breathing difficulties. At it’s worst, my wife found me curled up on the bed in the fetal position crying. Even though my doctor acknowledged that these issues at least stemmed from “an allergic reaction to Cipro”, he wasn’t convinced that my continuing condition was due to the Cipro. Why? Well there’s a parallel story here which is a topic for another “medical victims” blog. The short story is that some time before my floxing, I had had a sinus infection that was also causing me severe insomnia and some anxiety. My doctor prescribed Clonazepam (a benzodiazepine) and over time I had inadvertently become dependent on it. I didn’t realize until many months later that fluoroquinolones are contraindicated when taking benzodiazepines. This is something I found out through a benzo support forum only recently. Unfortunately, my doctor doesn’t quite acknowledge that these symptoms could be due to long-term withdrawal from clonazepam either. He ascribes my remaining symptoms to “general stress.”
Most of the significant physical symptoms abated after 2-3 months. It is now about 1 year since my “floxing” and I’m mostly healed except for a pretty terrible case of insomnia, some cognitive deficits, mild tinnitus, and the “inner body vibrations” that come on during the multiple times I wake up during the night. I also have periodic heart palpitations and anxiety although those symptoms have lessened considerably. I also became aware of the perils of getting addicted to benzodiazepines and tapered off the Clonazepam. I’ve been benzo-free for about 8 months.
Are my remaining symptoms due to the Clonazepam, the Cipro, or neither?. Benzodiazepine withdrawal can produce many of the same long-term neurological symptoms as fluoroquinolones. Of course, I’m not sure it’s important that I get an answer to that question. It is what it is and I just have to deal with these conditions the best I can. There is no specific treatment for fluoroquinolone toxicity or protracted benzodiazepine withdrawal.
I have to admit that I’ve become pretty disillusioned with the medical profession. I’m currently 52 years old and up until my late 40s, I was as healthy as an ox. I’ve never had a childhood disease. Never been admitted to the hospital. So I had little reason to see a doctor and I didn’t even have yearly checkups until my wife started getting on my case in my mid-40s. I ended up finding a GP I liked and with whom I established a good relationship. But after failing to warn me about how addictive Clonazepam was and not really dealing with my Cipro reaction very well, I’m thinking about finding a new doctor. But are any of them any better? Maybe this is just the way medicine is practiced now. At one point, my doctor told me that back in December he thought I was having a “psychotic episode.” He said that almost jokingly. Some time after that I learned that psychosis is common during benzodiazapine tolerance withdrawal and can also present in severe reactions to fluoroquinolones. So I didn’t really see the humor…
Like many, I’ve found magnesium glycinate to be helpful. I take as much as I can until I experience too much of the laxative effect and back off a bit. I find it calming and I also believe it helps me sleep. It was instrumental back in December through February when I was suffering from severe myoclonic jerks and muscle cramps. I can’t really give you an estimate as to how much I’ve healed because I find the insomnia to be so debilitating. Despite that, I exercise 5 times a week. Not too strenuously because I find that overdoing it exacerbates some of my symptoms. I’m able to work although not the 50+ hours/week I was used to (that’s probably a good thing). Like many others, I’ve cleaned up my dietary act. I no longer eat/drink gluten, dairy, sugar, caffeine, or alchohol. So by some measures (as my doctor is quick to remind me), I’m the healthiest I’ve been in 20 years. I’m certainly MUCH better than I was 9-10 months ago. I’m planning to see an acupuncturist to see if that will help with my insomnia. Once I lick that I’ll be golden!
My most sincere best wishes and positive energy to all those reading this who are suffering or who have suffered because of this drug.
October, 2014 Update –
I still have some remaining issues and it’s hard at this point to know for certain whether or not they’re flox-related. I was doing pretty well for quite a while. My remaining issues were sleep-maintenance insomnia and some muscle fatigue. But I was (and still am) doing much better than many. Then about 6 months ago I started experiencing increased fatigue. Not sleepiness which could be explained by the little sleep I get, but major down-into-your-bones fatigue. Because of the number of floxies who also seem to test positive for Lyme, I found an LLMD who bills himself as a “Holistic MD” who ran some tests. I was encouraged to see that many of the tests were not the usual ones ordered by standard MDs. Those tests came back just barely positive for Lyme. The LLMD told me that there was no way to say for sure whether I currrently had an active Lyme infection or whether I had just been exposed to the Lyme bacteria at some point in the past. He also told me that my symptoms were pretty minor as compared to most Lyme patients he treats. He was familiar with FQs and how nasty they are and does not prescribe them. However, he wasn’t that familiar with FQT.
After some additional tests and some soul-searching, I decided to let him treat me for Lyme. This included at least 2 months of heavy doses of Azithromycin and Rifampin. I tolerated these relatively well although I think they caused some reflux and other GI problems and increased my anxiety. After about 3 1/2 weeks of this, I got scared off and stopped the treatment. I was never really convinced that I had Lyme in the first place. And the Holistic MD was kind of “eccentric” and didn’t inspire a lot of confidence.
Over the last month my fatigue has increased and I had what seemed like a sinus infection. It started off with pain behind my eyes when I moved them up/down or right/left. That stopped after 1 week and then I got the full nasal congestion/head fullness. I treated that naturally with colloidal silver, neti pot, and lots of steam. Most of the symptoms seemed to resolve after a week. However, the fatigue remains. In addition, I still have some head pain that occurs if I move my head quickly from side to side. The pain is only on my left side and seems to go from my neck through my lower jaw, behind the eye, and to the top of my head. And I guess I still have some soreness when I move eyes as well. This could be a chronic sinus infection, or maybe not. My GP so far wants to try a trial of antibiotics (no FQs!), and I think I might need to do that before anyone will order a head CT or MRI which is what I really think needs to be done. Not sure what I’m going to do yet.
In the meantime, I’ve decided to take some other steps to address my ongoing fatigue issues.. Despite what I and the rest of the floxie community have been through, I don’t believe that all doctors are idiots. And maybe some of them can actually help me. I’ve read a lot about Functional Medicine and I like that approach. I found a couple of Functional Medicine practitioners locally, but it’s hard to determine whether they really practice functional medicine and how good they are. Typical problem when trying to find a new doctor. So I decided to go to the source. I made an appointment at the Ultra Wellness Center in Lenox, MA. This is the clinic founded by Dr Mark Hyman who some of you may have seen on TV. I’m not seeing him personally (he’s not accepting new patients), but I am seeing Dr Todd LePine.
This is not for everyone. It’s very expensive and most of it will not be covered by insurance. But I’m lucky in that at least for now, I’m still working and can afford this. What better use for my money than my health after all? I doubt they know anything about FQT and I’ll try to educate them although that’s not my primary goal. I’m just hoping that they’ll dig a bit deeper than a traditional doctor can or is willing to do to get to the root of my problems.
My appointment is in November and I’ll keep folks here informed.
Dear Brian, Thank you for your story, I’m so sorry to hear you have gone through so much misery .I was so depressed I told my family I wanted to die, They took me to the emergency room, when I told them I just didn’t want to live, they had me admitted to a mental hospital and I was there 6 days. I’m home now and I’m hoping and praying I don’t go through what you did. I had a U.T.I. also , and like you she put me on anti-biotics that I took for the prescribed 10 days, A day later I had all my teeth extracted and the Dentist put me on these pills again, took them for the 10 days, went back to my Dr. she put me on a different kind of anti-bioctics, took them for 10 more days, and I was on pain pills also, so I don’t know what made me have these panic attacks. I’m hoping you feel your old healthy self again soon. A friend in misery, Roberta Mary Ladieu
brian, I was also on benzos when i was floxed-I find myself needing to take more and more for the anxiety and insomnia. What helped you get off of the benzos?
Hi Ester,
Nothing helped me get off the benzos. After a few months of having to increase my dosage (due to tolerance), I decided that I had had enough. By this time I only needed them for sleep. So I tapered off of them. I probably did that too fast. At this point, I can’t tell whether my lasting symptoms (insomnia, body vibrations, tinnitus) are due to my floxing, the benzos, both, or neither. But even when my symptoms are at their worst, I refuse to take any more benzos. Benzodiazepines are another class of drug that I (and many others) feel are overprescribed. Just like FQs. If you want more info on benzos and getting off of them, I’d suggest you visit benzobuddies.org.
Good luck to you.
-brian
Hey Brain,
I’m also floxed, and a software guy.. I would like to talk off site. What is your email?
Hey Brian,
I had almost the exact same experience as you and came to know cipro in the same way. I too took cipro for an extended period of time for prostatitis and the onset of the adverse reaction took quite a while. Similar to you I was also prescribed benzos and have been tapering off of them for the last week or two. I am two and a half months post reaction and struggle with the daily leg pain/tendon pain and have recently been having some trouble getting a full breath. I’ve been told it’s a sinus infection and the Dr. prescribed prednisone which only exacerbates the leg pain. How did you over come the sinus infection and did the breathing issues subside on their own? How long was it until your tendon pain began subsiding and did you do anything that you think helped it along? I cannot believe how similar our stories are and I look forward to your reply.
Hi Josh,
The sinus infection resolved after a course of antibiotics (not CIPRO) and I haven’t had one in a while. I’m not sure why. The breathing issues still come and go, but when they do come around they’re not as bad as they were. Breathing issues like this are VERY common when you’re tapering off of benzos and you’re only in the very beginning of your taper. Sometimes, these types of breathing problems can be a sign of stress (which most floxies and people withdrawing from benzos are under to one degree or another). I found that doing concentrated deep-breathing exercises helped. Have you visited benzobuddies.org? Lots of great information and support there for people withdrawing from benzos.
My tendon pain subsided after a couple of months. I still get some twinges though, especially if I overdo it. I’ve limited my exercise and I’m careful to stop exercising if I start to feel anything getting tight in my tendons or muscles. The good news there is that I can exercise…
Hope this information helps. Good luck to you.
-b
I’ve never been on benzos and I had those same reactions after Levaquin. The extreme pounding, elevated heart rate, panic and anxiety that would practically knock me out of bed and wouldn’t let me sleep. They happened during the day, too, but not being able to sleep is dreadful.
i have the same symptoms ater 2 500 m of levaquin , im a year in . most of my symptoms are gone i have every single one . r now i dealing with just joint pain and ibs , good diet , and antioxidants , i have 2 set backs . short ones , and everyday less intense . it will get better . the mental was the worse part . god will help us
how you doing ricardo
and you josh
I have had vision problems, severe pain, numb fingers and toes (and nerve damage) bladder pressure, GI issues–lost 30 pounds from a healthy weight. Now I am having horrendous chest pain and breathing problems. CHecked out ok with cardiologist and pulmonologist. PLEASE anyone—any help with how to deal with the breathing problem? If I hadn’t taken Cipro I’d be going to the ER–but I won’t because I know they will just give me something to exacerbate. Been to every specialist, had every blood test–of course they all come back negative and no MD will help or believe me. Seeing ND next week but I almost feel like I may not make it…breathing is so so hard and the chest hurts so much. PLEASE does anyone have something they take for this that works?
sorry forgot to check box about email notification
MY teeth hurt too, along with several other parts. The hardest to deal with other than the vision and grossly hyper sense of smell, is the breathing and chest heaviness. It’s all the time now
TY ! For sharing your story. I had already floxed years before Hurricane Sandy. But because of floxing was put on anxiety, anti depressant meds. Which caused another set of issues. Hurricane Sandy sent me into a tail spin big time. Just thinking of it makes me crazy. You are a strong person. I can’t imagine being floxed in the aftermath of it.
I am pretty sure cipro = rifampin. I got nailed twice on cipro myself. I am also on a low dose of benzo or I don’t sleep. I have several lingering side effects, including severe tinnitus. I already had vertigo, and I also was given the Lyme dx and was assured cipro would cure both vertigo and tinnitus. The withdrawal from cipro can be brutal.
Brian, my too started with a UTI…and I was given prednisone at the same time as cipro, also contraindicated. I also had been strong as an ox..worked out regularly, 1 1/2 minute planks, three chinups. It has now been almost 4 months and still not strong enough to exercise, but I have put back 10 of the 30 pounds I lost, and am at least walking upright now. The breathing is still a problem, but a bit better. It is a weird combination of things—chest pressure and neck pressure and possibly mitochondrial damage to the heart muscle and /or autonomic nerve damage. I had total insomnia for about a month, then about 2-3 hours sleep a night and now about 7, but only with zolpidem (ambien, which acts like a benzo but is not) I have even been able to cut it in half, and once the breathing hopefully improves and I will try to wean off altogether. It is insane that this class of drugs, which were meant for life and death situations, are handed out so freely for simple infections.
What has helped me is twice weekly IVs from a naturopath…the numbness in my fingers is mostly gone and starting to go away in my toes. My hyperosmia (this is a truly horrendous side effect where all scents are so grossly exaggerated that it has kept me a shut in. Everything smells as strong a bleach) has improved some, my excruciating mid-back pain is less painful and occurs far less often, and the insomnia, again has improved. I have color back in my face for the first time in months. The IVs I get are high-dose vitamin C, phosphatidylcholine, Myer’s Cocktail and H2o2 (primarly for my asthma, since now my asthma meds are also contraindicated!).
Interesting tale. I stopped taking a prescribed benzo after 10 (!) years of daily use. I don’t have to tell anyone who’s been through this hell just how bad and frightening withdrawal is.
I have a bladder infection and was prescribed Cipro a couple of weeks ago. After one dose I was cramping,nauseous and altogether uncomfortable. Even though I told my Dr. I was in Benzo withdrawal she prescribed the Cipro because she saw no connection….there’s a connection alright. Until doctors educate themselves and start listening to their patients more people will suffer needlessly.
yes! It is astounding how few doctors are aware of those connections, and even MORE astounding how few are aware of ANY cipro side effects. FYI, I got another UTI after I was floxed and was terrified of taking ANY antibiotic. An ND had me taking D-mannose, herb pharm urinary system support, and tapering doses of A and C and it took several weeks, but went away completely as confirmed by a blood test. I don’t have the exact numbers/tapering doses I used, but I imagine any ND would be able to tell you.
Linda, I got floxed from taking Cipro for what they thought was a UTI. It has affected my breathing as you described, shortness of breath, a tight feeling across chest, sometimes with shaky feeling, heart racing and/or fluttering. I also get a thick throat feeling. I never had any anxiety issues and I had my thyroid tested but that was negative. I also get dull to sharp pain below my breastbone depending on the day it can also feel like it is going through to my mid back. I’ve read extensively and I too came to the conclusion that this is nerve damage to the automatic nervous system which according to my cardiologist (who determined after testing that my heart structure looked good, but that my heart was beating very fast) can also cause heartburn and indigestion. I’m almost a year out now, the first 4 months were the worst. I continue to have joint and tendon pain, (snap crackle pop when I move) a lot of eye pain, and a sensitivity to smells that never bothered me before. I walked down a candle isle and was overwhelmed with nausea. I’ve had several relapses but without a doubt the hardest part of this has been the pelvic pain, it is a deep gnawing pain that can last for weeks or months. The pelvic pain usually comes with urinary pressure, rectal pressure, pinching sensations, and low back pain. I think this is also a nerve issue. I have had 2 cat scans, multiple trans vaginal ultrasounds, but nothing shows up. Then I wake up one morning and the pelvic pain is gone. So far, the longest it has stayed gone is 3 months, each time I pray it never comes back. I won’t go into all my symptoms, because it is a long list that many others have already discussed but I will add an extremely odd one in case someother floxed person is looking for their symptom. At night, just when I am about to drift off to sleep I would get what I can only describe as a wave of nerve sensation that would crash over me, starting at my head and continuing to my toes, like a mild electric shock. It would happen multiple times a night, this only happened for the first few months thank god. To all those who are reading this in those first few months, it will get better, it takes time, and patience. Try not to freak out – everyone’s story is their own, you may be someone who gets better in 2 months…stay calm and focused on your own health. Good luck and God bless.
wow—Jennifer, we have a LOT of the same side effects. My breathing for a couple months was absolutely terrifying—literally gasping for each one. It is better but still not normal. The reason I figured it was the heart or autonomic nervous system was that my lungs checked out ok—and it just didn’t feel like it was the lungs. I also was very sensitive to any touch around my chest and back. I would have to hold a seat belt off and away from me (still do sometimes) and I was wearing the loosest bra I could find and it was so uncomfortable. I also had/have nerve stuff around my neck. sometimes it feels numb and other times like it is choking me. I too had a pressure/pain right in the center of the breastbone and sometimes it would migrate up a few inches. That has only just recently “left,” in the last few weeks (I am b/t 8 and 9 months.)
I had the hyper-sensitivty to scents that was so bad I was literally a shut in. I can go in stores now, but it is not comfortable. Esp if there are candles, or walking down the detergent isle. If I walk past a burger place, whereas before I would think “ooh, I want a burger,” now it is “what is that disgusting smell?”
The pelvic pain and pressure makes me feel like I ALWAYS have a UTI! One time I did, but just recently I was sure I did—pain, pressure, burning—and the test came back negative. I keep hoping this isn’t one of those “permanent” nerve damages (ditto the breathing and vision).
thanks for sharing….I was wondering if anyone else was experiencing these things.