*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.
Ten weeks from the beginning of my Cipro-induced nightmare, I am writing to share a story of recovery. Reading the recovery stories on this website helped me keep my spirits up while going through some very difficult times, and I hope this will help others dealing with this scary and poorly understood condition. Everyone reacts very differently, but for the most part, everyone recovers even if it seems like you aren’t making the progress you’re hoping for.
I was a perfectly healthy and physically active 26 year old with no known medical conditions. I was prescribed Cipro (500mg, 2x/day) in the US and instructed to have it while traveling internationally in case of traveler’s diarrhea. Sure enough, I ended up having to take the Cipro after coming down with a very nasty stomach bug. Shortly after my first pill, I felt very “off,” mostly dizziness and nausea that was hard to differentiate from the sickness itself. I continued the course and took a second pill the following morning and a third pill that night. The following morning, my hands and feet were numb and burning, which subsided soon after I woke up. I took another look at the warning label on the Cipro and decided to stop taking it. I didn’t notice much else out of the ordinary the rest of the day.
That evening, we went out for a hike. Towards the end I started to notice a tightness in my knees and ankles that I hadn’t ever felt before. As I kept going, I started to feel significant pain in those areas. Most noticeable was a sharp, deep pain in my knees, a complete freezing up of my Achilles, and a burning sensation around my quadriceps tendon. I was no longer able to bear my full weight (~170 lbs). At this point I was fairly certain that this was related to the Cipro. After a night’s sleep, I would notice the pain had subsided by the morning, but it only took a few steps before I felt it come full-on again. At this point the pain was excruciating and I could barely stand, even holding onto a railing or other support. I needed significant assistance and wheelchairs to make it through airports on our way home. There were moments where I felt that if I took one more step, I would certainly tear something, most likely my quadriceps or Achilles. I prayed on the plane that I would make it home in one piece because I did not want to end up in the hospital in a foreign country.
Thankfully, I did make it back in one piece, however the pain was completely incapacitating and relentless even if I was not moving. After getting our bags we immediately headed for the hospital. I explained my symptoms and my Cipro suspicion to the doctor, who did not have much to say. She prescribed small amounts of Ibuprofen and Percocet, did a quick test to make sure my Achilles tendons were not torn, and sent me home. Once I arrived at my parents’ house, I was completely immobilized for about 10 days. Even lifting myself off the wheelchair and onto the toilet was not something I could handle more than a couple times per day. I was not able to wheel myself because I would feel an extremely inflammatory and painful reaction in my wrists, shoulderblades, triceps and shoulders anytime I used them. For roughly one week, the numbness and burning was noticeable when I was falling asleep or waking up. I was not able to sleep more than three hours – it was as if my body was reprogrammed to wake up at roughly 3 or 4 am after exactly 3 hours of sleep. My legs were red and warm to the touch at all times. I was seeing floaters in my eyes, which also lasted about a week. I had various strange, inexplicable symptoms that would appear out of nowhere and I was feeling pretty pessimistic about my condition and my prospects for improvement. I had a number of heart rhythm abnormalities on my EKG and while I can’t be sure it was related to the Cipro, I have no history of any heart problems on either side of my family.
After seeing a number of different doctors – some who were interested in my condition, but none who knew anything about it – I accepted that there was no cure and I’d simply have to work hard to take care of my body and hope for the best.
My recovery over the past 10 weeks was not linear and I would characterize it as two sudden improvements in between two very long plateaus. After the first 2 weeks I was able to go home and take care of myself. After one month, I was mostly able to ditch the wheelchair and begin covering short distances (i.e. within my own apartment) on crutches, but I needed the wheelchair for any long distances like going to the doctor. For the next month, I slowly became able to cover longer distances with the crutches, however I had to be very careful because I would frequently experience a strong resurgence of symptoms (pain, burning, etc.) after putting stress on my body. It felt as if I had a certain number of steps I could take during the course of the day and as soon as I hit my limit, I had to completely immobilize my body or risk injury. Sometime around the 6 week mark, I was no longer dealing with the tightness and tendinitis I had been feeling, and mostly just felt deep and sharp pains in my legs when crutching. My muscles were very weak, and I had to take breaks while brushing my teeth because my triceps and chest would become very sore very quickly. After a month of crutches, I was able to cover very short distances – getting dressed, or walking to the bathroom – without any assistance. Around week 9-10, I left the crutches behind, and I am finally at the point where this is not interfering with my daily life anymore. I still feel symptoms throughout the day but they are tolerable, and I am being careful to know my limits. I consider the recovery I’ve made in the last couple of weeks, given where I was just a month ago, to be pretty remarkable. I imagine a lot of it has to do with the fact that I only took 1500 mg of Cipro and whatever metabolite or other poison that was left behind has largely been purged from my body. After 10 weeks I’ve lost most of the muscle in my legs and much of the strength in the rest of my body, so I am hoping to begin a tougher exercise regimen in the coming days and get back to where I was before all this. I still get cramps in my calves and chest, which is rib pain that can easily be confused for something else. I still have a lot of pain in my feet, especially after a day with a lot of walking. I can live with it.
I read every recovery story I could find on the internet and tried out some of the recovery suggestions that a people had written about. It’s hard to say what helped and what didn’t, but I have some thoughts on the things that did help.
Stay positive. After reading all of the horror stories in the beginning, I knew I had to stop. I focused on only reading recovery stories and medical journal publications that would help to educate me about what was really going on. It’s hard to fight the paranoia and hypochondria that comes with facing an unknown medical issue like this, and I have had a hard time resisting it myself. But I truly believe that staying positive and not dwelling on my condition really helped. It’s normal to have anxiety but try to not feed it. You need to remind yourself that you’re having an adverse reaction to Cipro, which is something that is not medically understood and has no clear mechanism of action, and that’s it. You don’t have lupus, or benign MS, or latent Lyme disease, or anything else. If you do, that’s a separate issue. This is the Cipro and it affects everyone differently.
Rest and hydration. I noticed that my condition fluctuated the most based on these two things. After a poor night’s sleep, I would feel symptoms come on stronger the next day. If I had drank a little too much the night before but not focused on staying hydrated, I would feel symptoms come on stronger the next day. Get as much sleep as you possibly can and drink as much water as you possibly can and your body will heal faster.
Healthy eating and supplementation. I never ate much junk food or fast food but didn’t have the healthiest diet. I immediately started getting multiple servings of leafy green vegetables (spinach, kale, beans, Brussel sprouts) every day. I started eating multiple servings of fruit every day, adding a fruit salad of raspberries, blueberries, blackberries, and bananas to my breakfast. I tried to reduce my carb consumption but didn’t cut them out altogether. I understand a lot of folks feel new food sensitivities like soy, gluten, wheat after a bad reaction to any quinolone antibiotic. I felt that somewhat early on, but don’t believe that it really affects me anymore. I cut out all caffeine, which it seemed my body could no longer tolerate. While I didn’t go crazy with the supplements, I did add a few. I started taking a daily men’s multivitamin, one 250mg magnesium tablet each morning, a probiotic to rebuild the healthy bacteria in my gut, and an omega-3 fish oil supplement. I think it helped, who knows. One thing I believe really did help was a Liposomal Glutathione supplement I started taking every other day. The first major improvement I felt (going from wheelchair to crutches) came shortly after adding this. It made sense to me after reading how Cipro causes cell-level DNA damage that Glutathione might help, since it’s usually given to chemotherapy patients to help prevent cell damage.
Push yourself a little bit every day. This is a long game, so you shouldn’t feel a need to make rapid improvements. Each day, take a few more steps, walk a little farther than you could the day before. Know when you need to stop, and reward yourself with a relaxing hot Epsom salt bath. The first day I started really trying to walk without crutches, I felt a deep burning sensation pulsing through my knees and quadriceps by the evening. This was a good sign that my body had worked hard enough for the day and needed to rest. Don’t view that sort of thing as a setback. After 9 weeks I started riding the resistance bike (with no resistance) and am able to get in some light exercise without major symptoms, just the occasional pain throughout the body that is tolerable and not incapacitating like it used to be.
Alcohol. This will be controversial for some people but I always felt that a couple glasses of wine helped loosen me up and reduce some of the pain. I have to think that this is healthier than Percocet. Just make sure you stay hydrated and don’t go crazy with the drinks. I will elaborate on why I think this helped a little further down.
Try alternative things that don’t carry much risk. I went to a couple acupuncture sessions and didn’t feel it helped me, so I stopped. I read about active release therapy and hyperbaric oxygen champers but didn’t end up trying either. I got a massage once I felt I could handle the pressure and while it was relaxing, I’m not sure it helped. One doctor suggested I consider platelet-rich plasma injections, which was intriguing, but a harder measure I wasn’t ready to consider yet. For most people, including me, Cipro induces a full-body reaction so I’m not sure that shooting some enriched blood into my ankles would do much to ease the pain in my upper body. Generally, these are all treatments that take care of your body and are not going to directly fight the Cipro reaction, but if you take care of your body you will heal faster.
One interesting thing to note is that all the tests I had came back negative. My blood levels were “pristine” according to the doctor, but they mostly just tested enzyme levels to make sure my muscles weren’t wasting. I had an echocardiogram and my heart looked fine. After 7 weeks I had an ultrasound done and my Achilles, patellar and quadriceps tendons all looked fine. That was the most surprising result, because I’d read about all the structural damage to tendons that had been observed during post-Cipro surgical procedures, and I had none of them. This amazed me after the pain and tightness I’d been feeling in my joints. It led me to believe that this was largely a nerve problem, not a musculoskeletal problem, which makes sense based on all the reports of Peripheral Neuropathy. I just never thought that was the primary issue since the pain felt more structural than anything else. I considered having a nerve conduction study or an EMG, but I’d read about others doing this with no findings, and decided it wasn’t worth it. But, if this was a nerve issue (and I don’t know what else it could be at this point), it makes sense that alcohol really seemed to calm things down and improve my symptoms.
What worked for me won’t work for everybody. But, the important takeaway is that even at your lowest point, when you don’t think you are improving, tell yourself that you will get better. You will, it’s just hard to say how long it will take. The body has an amazing ability to heal and if you take care of it, it will take care of you.
Max’s Update (posted 09-30-16) –
In June, I received a half-dose Kenalog/Lidocaine injection in my knee area, to address a tendonitis issue I had been struggling with well before my Cipro issues began. I had been feeling good enough (but far from perfect) post-recovery from Cipro to get back in the gym, but after the old unrelated tendonitis issue flared up, my doctor advised me to try a steroid injection. I received the injection on a Friday, and while it felt a little funny at first, like an icy trickle down my leg, it definitely felt like it was working. The next day I played golf, which I considered to be very light activity within the boundaries the doctor had given me. The following day, 2 days after the injection, I started to feel significant pain when walking in the tibia of the same leg I had the injection in. It very quickly got to the point where I had to stay off of it or it felt like my lower leg was going to snap. At the same time, I noticed a bright red stripe of skin about 3-4 inches long running over the affected area. It looked similar to the skin redness I remember from affected tendon areas (patellar, quadriceps and achilles) during my Cipro days, but I hadn’t made the connection yet.
The next day was when I realized it was all related. I started to feel the same sort of muscle-tearing, ligament-locking pains from 6 months earlier during my acute Cipro reaction. I knew immediately that the steroid injection had aggravated the lingering effects of Cipro on my body. It was a crazy feeling of deja vu – the same symptoms of insomnia, extreme pain, inability to walk or eat, were all back in full force. I went back to the doctor to have him look at the red area on my leg. They felt around the area, which was extremely sensitive and painful to the touch, and advised me to get an x-ray and bone scan with contrast. I was also worried about some of the scarier side effects of Kenalog, which include osteonecrosis and long bone fracture. Fortunately, both tests came back negative for any issues. The doctor also provided me a full 15-page brochure for Kenalog, and sure enough, one of the potential side effects listed was the aggravation of the toxic side effects of fluoroquinolones. I remember that people had anecdotally mentioned not to take prednisone or other oral steroids when recovering from Cipro toxicity, but I did not make the connection before getting the injection.
Fortunately, this “flare up” did not last like the first encounter. I was only off my feet for about 5 or 6 days, unlike the 10 weeks from my acute reaction. I was able to walk pretty well and cover long distances the following week. I did have a minor issue where my achilles and quadriceps tendons really tightened up while walking uphill and climbing stairs, but it subsided after a day. But I did learn my lesson. I wanted to share this experience with others who are recovering from fluoroquinolone toxicity and warn about the risks of steroid injections, or at least Kenalog, if you are still feeling mild symptoms of your initial reaction (or even if you’re not feeling the Cipro anymore).
** 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.