*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.
On February 8th, 2014 I made a fateful decision that would change my life. I took a fluoroquinolone antibiotic called Cipro. I was having frequent urination at the time and thought that I might have a urinary tract infection. I went to my primary doctor in the morning and was waiting too long so I left. I went to my local emergency room later that evening. They took cultures and swabs and gave me zpak, cipro and pyridium. I took them all at the hospital. I should have known something was wrong that night because I had what seemed like a fever and tossed and turned all night. I was being poisoned. I didn’t connect the dots and took two more doses the next day. I felt dizzy that day but never connected anything to the Cipro. On the second morning I did a workout with weights but felt weak and actually pulled a muscle with light weight which never happens to me. I went to work and was having trouble seeing, as the lights were blinding me, and I was exhausted. I then realized that something was going wrong with my body. I looked up the side effects of Cipro and went to the emergency room. By the evening my shoulders and achilles tendons were beginning to feel sore. I discussed this with the emergency room doctors and they dismissed my concerns and just told me to stop taking the medication. I had taken four 500 mg pills of Cipro total.A day after stopping Cipro, my triceps tendons became so painful that I had to sleep with ice packs on them, they felt like they were going to explode. This felt all wrong, I knew something was off. I sneezed and threw out my back. I stopped working out because my body was killing me. My tendons began to feel like they were going to break. I felt something was wrong mentally as well. It was like I lost all of my happiness and could not concentrate. Ten days after Cipro, I decided to try to workout…that maybe this was all in my mind. I began to do some lat pulldowns and while warming up I pulled my bicep tendon so severely I could not move my arm. I then re-injured my back and was now out of work. Then the peripheral neuropathy began. My legs, arms, hands, and feet began to burn like a cold fire. Muscle twitching all over my body. I developed a rash on my groin, white growth on my tongue. Insomnia, anxiety, crying, vision problems, weakness. Most of my joints and tendons hurt me. Achilles, back, triceps shoulder, knees and hands. Burning tendonosis. Ulnar neuritis. Chronic fatigue was awful. I slept most of the day. I could not enjoy anything. I stopped listening to music or watching movies. I began seeing doctors and lots of them. Orthopedics, MRI’s, X-rays, no one could tell what was wrong. They tested me for lymes disease, MS, ALS, etc, etc. and it all came back negative. Not one doctor would admit or believe me when I told them that I believed the Cipro poisoned me and I was having fluoroquinolone toxicity. I went to physical therapy and slowly the back pain declined. I still had neuropathy and tons of tendon pain. I was taking all the supplements imaginable, every day. I started eating more. Six weeks after Cipro poisoning I began to force myself to do rehab exercises everyday in pain. I started walking in pain and doing simple band exercises. My steps felt like I had dead legs and feet. My muscles shook like I had epilepsy and couldn’t control them. During this time I developed strange bruises on my calves and arms. I slept in the sunlight outside during the day to increase my sunlight exposure. I increased my magnesium and took magnesium oil and epsom salt baths. I prayed and prayed. I had been out of work for 3 months during this rehab time. Three months of my life gone, trying to fix myself with a desperation I had never known, longing for my old life back and regretting all the times I took for granted my health. I read the FloxieHope stories every day even waking at night to reread them and tried to give myself hope. They were the only thing that kept me going when I thought I was going to die. I joined all the FQ boards and was on them religiously for awhile. I spoke to others who had recovered and read their stories daily.
I finally went to the neurologist and found out that my nerve velocity was abnormal, which was indicative of a damaged myelin sheath.
I had glutathione IVs which gave me instant mental clarity. Almost like the veil or cloud was lifted from my brain. I did this twice. I think I should do it more often. I did acupuncture and massage therapy. Acupuncture seemed to give me some much needed pain and anxiety relief. I prayed a lot during this time and renewed my spirituality.
This is a brief synopsis of the hell I lived because I can’t and don’t want to remember all of it.
It is now eight months after I took my last pill of Cipro. I have had a lot of up and down cycles. I still go through them but they seem to be much shorter in duration. The problems I still have are lessened. They decreased incrementally. I have some tendon flare ups, I have knee discomfort and some back pain. Occasionally I will get a dizzy spell or have a forgetful moment where I can’t remember words. My supplementation right now is:
vitamin c 1000mg
vit d 2000mg
b complex
coq10
alpha lipoic acid
acetyl l carnitine
l arginine
glucosmine chondroitin
collagen
magnesium oil 600mg
magnesium oxide 500mg
vit e 400mg
lots of whey protein
Within a few weeks of being floxed my IGF-1 levels skyrocketed to over 400, which was double my normal level. I believe that my body sensed the cellular disruption and began a reboot, trying to increase growth hormone in the blood stream and start up normal cellular function including tendon repair and cellular repair. My thyroid went off line and now I take armour thyroid which has helped my energy levels tremendously. Somewhere along the line I had to make a choice to stop living my life in fear. I lived every day in fear, and still fight it every day when something flares up. I had to truly not give a fuck, because I knew that if I was going to win this fight I can’t be afraid to fight.
Today I can sleep with no problems. I workout with weights three times a week. Sometime I go very heavy and sometimes I go lighter for lots of reps, depending on how I feel. I squat, bench press, and train back, shoulders, and arms. I do cardio and rehab another 3-4 times a week, this consists of sled dragging, sledgehammer swings, forearm, back, ab, and rotator cuff work. Whatever I can move I train it. I have a lot less pain. I returned to and enjoy my hobbies again. The neuropathy is only occasional and lasts for a few minutes of burning or what I call hot needles, but is still scares me. I can laugh, I can be happy. My energy is returning. My libido is normal. My good days far outnumber my bad days. On my bad days I retreat to my support system and try to regroup and refocus then reattack. I eat tons of antioxidant rich foods. I avoid processed foods and sugar. I stay away from medical doctors, and am now truly an active participant in my own health. I consider this not a recovery story but a progress story. I know that things take time to heal, I am healing. I know you have to believe, you will get better. I may have setbacks to come but I’m not done fighting. Neither should you.
** 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.
Hi All, I have been glided on Dec 1, 2014. Looking back & connecting the dots, I realized I have been having th symptoms all along for the last 1-2 years. I got Avelox in 2012, 2x in 2013, March 2014 & then now – after 1 pill started getting popping / cracking sound of my knee & feet joints – thought this is b/ c of winter & old age. After second pill, all my joints were cracking/ popping loudly every time I move. It is now 10 days post & I now also have pain on my joints & my numbness /tingling on both hands (last 3 fingers) at night is getting worst. Have had this for the last 2 years – negative nerve conduction test. I also get hot flashes/ night sweats , which I thought was from my menopause. In the last year I got the mystery bruises, blood tests negative & my doctor told me this can be from some connective tissue disorder. I also have been getting muscle cramps on my legs & feet. I am very scared. Did you all go on 100% organic & gluten free diet ? I am not used to taking supplements & somewhat fearful of these doing another type of harm – but I suppose I don’t have a choice. I had my thyroids out in 2010 for thyroid cancer. Any help I can get please…….
Miriam, I did go gluten free and mostly grain free (no wheat, corn, or soy in any form) but I had other issues prior to being floxed. I have also been doing intermittent fasting. I evaluate pretty much everything I eat now and ask myself, is this food going to nourish me or not? Of course, I am human and I have cravings so I eat the occasional crap.
I would take Ruth’s (comment above) advice. https://floxiehope.com/ruths-story-cipro-toxicity/ I followed most of her recommendations and her protocol has really helped a lot. I believe I am really getting better every day. It’s slow going, but every week is better than the last. Certain areas of my health, that had nothing to do with FQ toxicity have been cured. I’m very happy with my recovery so far.
And thanks Ruth for sharing your story. It helped me so much!
Rose
Rose,
I am so happy my story helped! I was already on top of the world after a great Christmas program rehearsal this afternoon and now your comment just really made my day!
I pretty much followed the protocol in that e-book on Levaquin Tendonitis. Lisa has been promoting it on this site. They have done a revision of it and I really recommend it. Most of the supplements I took were based on their recommendations. The Idebenone and MitoQ I found on my own through reading a research study in which both of those were able to stop tendon damage from Cipro.
I feel the same way, Rose, that certain areas of my health are better than before I was floxed. I was definitely magnesium deficient. I kept pushing calcium supplements over the years, never realizing with if you are low on magnesium all that calcium is useless. Nothing in your body works very well if you are magnesium deficient. I am finding that I need to keep pushing the magnesium. When I only take 400-600 mg I really start to feel mildly deficient again. I have a lot more stamina, less pain and better progress in my recovery when I take more like 800-1,000 mg plus the magnesium oil and the Epsom salt baths. I have read other floxies complaining that they have to keep taking 5-6 magnesium pills a day if they want to feel ok. I feel really good and if taking magnesium is all it takes at this point to keep me feeling good, I’ll gladly do it. I think I’m still correcting the pre-flox deficiency as well as the fact that I lost a massive amount of functional magnesium when I was floxed. I think that happens to a lot of people.
Happy healing to us all!
Ruth
Hi Ruth,
I am so glad you had a great rehearsal and this Christmas sounding good. I’ve been listening to lots of Christmas music already and I love it.
I did notice that when I lower my magnesium dosage, I tend to burn out faster. I am only about 13 weeks out from my last dose of Cipro so I know I have a ways to go. If it wasn’t for this community of healing stories (and google scholar) I don’t know where I would be.
The positive thing about this whole debacle is that I have not had a migraine headache and I have been able to stop taking the antidepressants that I had been on for over 20 years! I saw my psychiatrist of 20 years today and he was in shock. He suggested I not change a thing about my diet or vitamin protocol, since we have no idea what one thing helped cure my depression. It’s really hard to say since I changed pretty much everything.
I am still physically healing but some miracles have come out of all this. I totally believe that the things you suggested really put me over the edge to heal.
I can’t thank you enough.
I hope your Christmas is awesome.
Rose
Hi Nick,
My daughter took 2 days worth of Cipro (she had taken it previously at other times with no adverse events) and wound up with terrible insomnia that 2nd night and woke up with muscle weakness and cramping, twitching in her shoulders and face, and pain in her muscles and joints. I am in the U.S., but she lives in the U.K. now. This literally just happened on January 13 ,2015. Reading your story gives me hope. Any help right now…any suggestions you can give me to help my daughter, would be appreciated. Thank you, Lisa
Hi Lisa, sounds like she crossed her threshold for FQs. I would immediately double up on antioxidants, magnesium and quality nutrients like whey protein along with good carbohydrates and fats. Gently move as much as possible for the first 2-3 months. Then progress slowly if you can. It might be a struggle and she might have to dig down and be tougher than she ever thought she would have to be. Anger, frustration, faith and hope are all her allies. Avoid the temptation to visit endless doctors and doctors. Most will not help, unless you are severely broken. symptoms will come and go after a while. some may stay for years. some will get better rather quickly. no one can tell. trust your body, trust in its own healing capacity. the younger she is the better. It is very hard to “move on” mentally from getting poisoned, but friends and family can help. If she can get on the boards and find a “partner” that she can chat with and motivate her, someone that is going through it with her, that would be excellent. Let me know if I can help.
where in uk out of interest im in london
She’s in London.
ger her to join the https://www.facebook.com/groups/floxies/ she can ask all us floxies for help
Another case of ‘undiagnosed’ Ehlers Danlos Syndrome no doubts about it now
Nick, your story is full of hope. Best wishes for continued health and happiness!
People we need to work together on this one. Very important!
Cipro was just mentioned on Joe Rogan’s podcast:
http://youtu.be/75LirHTjHzA
(@ 28:35 after she talked about anthrax)
This podcast is listened to by millions of people on itunes, ustream, his website joerogan.net and youtube. We NEED to ask him to cover it in one of his next podcasts and even better to invite Lisa!!! 🙂 He is very open about every subject of interest and very direct and honest without having to answer to any sponsor or media group.
PLEASE send him requests to invite Lisa and cover this subject.
His twitter: https://twitter.com/joerogan
His homepage: http://www.joerogan.net
His youtube channel: https://www.youtube.com/channel/UCzQUP1qoWDoEbmsQxvdjxgQ
His facebook page: https://www.facebook.com/JOEROGAN
Send him as many requests as possible. I already contacted him via all this plattforms but we nee more. Only if there are enough requests will he look into it, as there are many requests send his way. So please let’s all send him at least 1 message.
It’s a chance to reach a lot of people.
Mark
Hey Nick, just now seeing your post for the first time. I too got floxed after just 4 Cipro for a UTI. (Actually the floxing started after only three, and if I had known at the time, I would have stopped there, but took me some time and research to figure out what the hell was going on.) So glad to hear of your great recovery. I seem to be the odd one here for side effects—no muscle or joint problems (so far, just been 3 months) but some pretty horrific other ones—extreme breathing problems, hyperosmia (exaggerated sense of smell and even phantom smells—keep smelling “cigarette smoke”), pericardial effusion (fluid around the heart) and numbness in fingers and toes. Also a 30 pound weight loss in two months with a really screwed up GI system. (All started with floaters, black specks, blurred vision and a swollen Ulnar nerve on the wrist.) I get IVs and I too get a glutathione push after most of them. Keep up the great progress!
Nick…thank you so much for your story….I am so impressed this your will power…My story is is nothing like what all of you and the others have had to deal with….I went into the hospital ER for a COPD Flare-up on June 30 of this year 2015….I have always told the doctors no Bactrim or Cipro…but i did not know about the other 5 ones on that list….My Pulmanory Doctor gave me Levaquin…that is when the trouble begin….leg cramps…severe pain in my heel tendons…brain fog…depression…insominia….and a few others…I found this site and found hope…I have been doing most all the supplements everyone else is doing…I just added Whey Protein….The pain is getting better…it scares me that a lot of people have relapes….I guess I will deal with that if it comes….no choice…I so pray all of you get better it is so hard to deal with…I also comfronted my Doctor…of course he denies it was the Levaquin…..I will never trust him again….but I will also never take any of the 6 antibotics that are in that group…….I am so glad I found this site…..it tells me what the doctors will not tell you….
Cindy Message me on Facebook if you have questions.
hello nick, i dont know whether you take phone calls but i am scared to death. my spasms have increased with tingling sensations. need some moral support. thanks dan. 732-614-0085.
my e-mail is redstar5500@yahoo,com dan.
I too am having a flare up of tendonitis, stiffness, spasms. I feel terrible.
hi guys im a 27 year old male , i was prescribed cipro a few times ,with the last dose 3 1/2 years ago ,still have alot of side effects coming and going randomly, but one seems to really stick around is the vision problems , i see people talk on here about floaters and blurry vision, i didn’t make that connection until reading it on here, i suddenly had double vision 6 months after taking cipro ,went to doctors,neurologist, and nothing came back expect the optometrist simply saying i needed lens for astigmatism, my doctor also admitted that you dont suddenly get astigmatism so i think it was caused by cipro, was hoping someone on here has had any luck restoring vision or helpful tips, thanks!
Hey Greg…I didn’t have the double vision but definitely blurred vision and humongous floaters that further blur the vision. At one point—this was so bizarre, it was like my brain couldn’t put the vision from the two eyes together, so I was seeing different things out of each eye. Hard to describe an was so anxiety provoking.
The blurred vision is still there intermittently but much less so. It was ALL the time before. The damned floaters are still there. (A researcher estimated that since cipro damages collagen, it does the same to the vitreous gel, and that’s what you are seeing with floaters—bits of vitreous gel floating on the back of the eye—you see the shadow of them.) I read serrapeptides help so tried that–no difference. I read that goji berries help—ate them for months with no difference. Now I am trying eyedrops that anecdotally have helped, with NAC in them. They say you need to use them for months and I only just started, so I don’t know if they will help.
A friend of mine had double vision after a ski accident and she went to an optometrist who gave her eye exercises to do and they went away. You might want to look into that.