*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.