*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.
The story –
Thank you all for the feedback. I hope some of the stories I shared will give you hope. From my experience, there is no guarantee of recovery but the chances are very, very good that you will improve over time.
The other thing I learned is that there are no hard and fast rules. Some people are devastated by a couple of pills and some take 90 before they have problems. And we all probably know people that have experienced no apparent problems from taking and FQ.
Also, with treatments, use your own judgement. For instance, I had problems with oral steroids and know many, many other floxies that experienced problems, some very, very severe, after oral or injected steroids in an attempt to cure there floxing symptoms. However, I also knew at least three folks that swore that steroids helped them tremendously. Personally, I would stay far, far away from them, but I cannot make that decision for anyone else.
Recovery stories:
Hello all. New to group–my long story made short as possible–
In 2001, I took 28 500 mg levaquin pills for suspected prostatitis (in hindsight, pretty sure I did not have prostatitis). I was EXTREMELY athletic and participating in numerous high impact/stress sports while on the drug. Started having pain at about 2 week mark and it gradually spread, but I blew it off to age and overexertion as I was not aware of the tendon side effects. By day 28, the pain had morphed dramatically and I began to have other symptoms like twitching and lightheadedness. Finally connected the dots after going to Ortho McNeil website. Stopped the drug immediately and went to doc. He said don’t worry all this will pass once the drug gets out of your system.
Within a week of stopping the drug, the symptoms had snowballed and dramatically increased in intensity. Within a month, I had the following symptoms-
Bodywide severe tendon and joint pain
24/7 muscle twitching in many parts of my body
Tingling and numbness in extremities
Severe fatigue
Vision problems
Tinnitus
Severe insomnia
Drenching night sweats
Taste and smell perversions
Anxiety/Depression
Easy bruising
Frequent spells of lightheadedness (world would “spin” for 30 to 60 seconds)
Muscle weakness
Hair falling out
The next 18 to 24 months were horrific. Some symptoms would wax and wane but overall it was terrible. Eventually, all of the neurological symptoms went away. It took about 6 years for the twitching to go away. The tendon problems are the only ones that never fully resolved. I had numerous severe relapses of the tendon pain after periods of getting better. Finally, they settled down and I was very functional. My last horrific tendon setback was in 2008–I was very incapacitated again. I have mostly recovered. However, I still cannot push too hard and do many of the high impact things I used to do like run, jump, lift heavy weights, play tennis, etc. I was playing golf, skiing, biking hard, etc.
I have been through all kinds of tests including bloodwork galore, MRIs, Xrays, ultrasounds, nerve conduction studies, etc. Went to both Cleveland Clinic and Mayo. Saw Dr Flockhart. No answers from anyone. The only thing that my bloodwork revealed was screwy hormones. Cortisol levels were extremely elevated in the beginning but came back to normal after 18 months, thyroid levels were “normal” but MUCH different than they had been in physicals for previous 10 years, below normal IGF1, low testosterone levels that came back up after about 2 years but they still fluctuate wildly. All other tests were perfectly normal.
I’ve tried all kinds of things, most did not work and a few made me much worse. The things that did not work included anti inflammatories, narcotics, acupuncture, electrical stimulation, PT, ultrasound, chiropractic, every supplement known to mankind, anti candida diet, gluten free diet, etc. Things that made me worse include steroids and fasting/detox diets. Massage was somewhat beneficial for short term pain relief.
Time was the healer in my case. Nothing else helped. I kept a positive attitude, exercised to tolerance–primarily biking (even if it meant riding the recumbent bike for 10 minutes on the lowest setting possible), ate only antibiotic free meats (but never, ever chicken or turkey), took care of my family as best I could, worked to the best of my ability and lived by the motto that everything happens for a reason.
I have been in personal contact with over 100 floxies over the years via phone, email and personal contact. So, I have a lot of anectdotal evidence regarding treatments, recovery, etc. Most people recover mostly or fully but it can take a long time. A select few do not improve. No one has found a cure or any supplement, treatment, etc that makes much of a difference. Time is our friend in terms of recovery. A positive mental attitude (which is very difficult to maintain) is essential.
Unfortunately, I had two blockages in late 2011 that required stents in my heart. I am taking plavix and it seems to be affecting my muscular skeletal system again. However, I must take it to keep the blood from clotting on my stents and killing me. So, here we go again with the constant muscular skeletal pain. Been through it before so I can make it again.
Any questions–let me know.
Good luck to all.
2) Okay, one more then done– “Though I had had both cipro and levaquin earlier, the dose that started the long-running nightmare was one levaquin back in 2002. I never had a documented rupture though I suspect there were mini-tears. At its worst, I could barely do my job, and it’s only office work. I haven’t thought for quite awhile about the specifics of all the limitations and frustrations; things like not being able to carry a gallon of milk from the car to the kitchen. Man, am I glad that’s all behind me.
3) Another recovery story (unfortunately I don’t have histories on these people–I actually contacted every one of these folks off the old forum by emailing them directly off their posts. Many of the emails garnered responses like this that helped me get through the early months/years of my levaquin disaster)– Hello B, I took two Levaquin, one each day of 500mg. My symptoms started on day two. One of my knees started hurting and I started getting very nervous. I looked on the internet and fortunately found this message board and threw the other Levaquin in the toilet.
Within a week’s time it had gone into both legs. I wasn’t able to fully straighten them for over a year. If I laid on my back in bed, I had to have a pillow under both knees. It felt like the muscles and tendons in my legs had been made shorter. Also I had a lot of severe pain in my knees.
I have taken vitamins all along, before the ADR and after. The only other things I have done is starting in Dec. 2003, I increased the magnesium I take to one 500mg pill in the morning and one chelated calcium/magnesium pill in the evening, that supplies a bit more magnesium. I have also been on a low carb diet since Dec. 2003. Whether either thing is what caused the improvement I just don’t know. Possibly it was just that it took that long for me to recover. Also, I still don’t eat turkey since their young are hard to raise to maturity and the breeders have to give them more antibiotics to keep them healthy. I seldom eat beef, but I do eat a lot of fish and chicken.
I hope you will see great improvements very soon. Just don’t give up!
4) Another one–“Actually I am doing better than ever. I am now doing High Intensity Interval Training and getting in better shape every day. Some days I mess up and eat really bad but hey, don’t we all. 🙂 My belief to this day is that the major issue with the FQ experience is the damage it does to the CNS. And that is why recovery is so slow and for some never comes. And I believe that anything that can weaken or attack the CNS will cause a relapse. That can be stress, illness, injury, lack of sleep, anything really. I believe it is just a time issue as far as the healing process. I don’t think that what many view as setbacks are really setbacks, but instead just the symptom recurring during the healing process. But the fact that you are healing is the positive issue here and it is what you need to focus on. Your body is moving forward in its battle. So try to stay “up” and realize that everything will be ok. Even the tendon problems that accompany this “medication” can be CNS related. There may be more to it but that pain can certainly be caused by CNS damage. The meds can probably affect the tendons and bones directly too, (in fact I am sure of it), but that too will pass. If you had made no progress in the time since you took the pills, I might be concerned, but with the progress you have made, I am sure it is just a matter of time and patience. So hang in there.”
5) Another story of recovery– “Hi- sorry to hear about your difficulties post- levaquin.
I hope you’ll be encouraged to hear that I’m almost completely recovered from the Levaquin disaster. The only long-term problems that I think may be related are a problem with my shoulder joint (on and off) and thyroid reaction that may or may not be related- no way to know. In general, I feel great. It took at least a year to really feel recovered. My main problem was joint pain and weakness.
I hope your health returns to normal ASAP- good luck!”
6) Another short email of from mostly recovered victim (these are all unedited so spelling and grammar are not great on some of them– I am doing pretty well actually. Thanks for asking. It
has been almost 19 months post Levaquin, and I have no muscle pain any more.If I work out real hard (yard work or heavy lifting ect.) I will feel worse than I used to especially the next day or two, but that might just be I am getting older. (33). Anyway my ear ringing is bearable but is really the only thing bothering me along with my left eye now has 20/40 vision. I think I now have some forms of arthritis in the early stages from the earlier problems.. I might have problems 10-15 years from now more pronounced arthritis wise. Nothing major at all. At least not compared to the year of pure hell I went through.
I have very minor cycles now and then but they are going away. My muscle twitching in my calves do act up sometimes, but that too is getting less and less. I still have no had ANY caffeine, and probally never will. LOL
7) Another email of recovery–“It’s good to hear from you. Am I 100% my old self? Well, I really don’t know for sure. Sometimes it is hard to remember what life was like prior to Levaquin. I am certainly much better than I was during the winter of 1999.
I have some aches and pains but since I am now 54, it is hard to tell if this is a holdover from the ADR or just getting older. I don’t have anything that keeps me from doing what I want. I guess I should be thankful that I am not experiencing a lot of the problems that my friends and family members report.
My sister (only one year older than I) has a whole menu of post-50 type ailments. She’s on no fewer than six prescription therapies and is not enjoying life at all. Sometimes I wonder if part of her problem is all the Rx that she has used for every complaint.
I have become even more skeptical of modern miracle drugs and at the moment take nothing except over the counter Ranitidine for acid reflux. This does not include the vitamins, amino acids and various and sundry other supplements that I have been taking for years. I also do a half aspirin each day to reduce risk of heart attack and stroke.
So, if you want to say I am fully recovered, I would agree.”
8) One more for neuropathy– Hi B:
sorry to be late in replying, been on a long vacation!
also sorry to hear about your problems with Levaquin. The good news is
others are aware of these problems; the bad news is most doctors are not!
which makes for a very frustating experience if you are the patient. So you
will find no hard and fast rules for what to do to help. and the
pharmaceutical companies (and the FDA) have been told REPEATEDLY about these
problems and each time someone calls they act dumb all over again.
Whether symptoms persist or not and what to do about them varies from person
to person so I can only tell you what I think helped me. Perhaps it was
time…. though it was certainly a LONG time (18 months or more). and like
others my symptoms cycled so i would be relatively okay and then be sitting
at my desk at work and it would all come over me again. horrible and I
certainly hope yours is short-lived. here’s about what happened to me, though sometimes I have to think about what
happened first and the sequence gets screwy…
while on the levaquin first time in April 1999– visual problems, painful
muscles, painful burning in sinuses and face, tiredness, irregular menstrual
periods (you won’t have this problem!).. did not know it was the levaquin
except in retrospect.
thoughout all this I exercised, probably lucky i did not tear a tendon. but i
have been working out all my life, including walking dogs and gym work outs
so i did not quit.
then in july 1999– two week dose of Levaquin.. ended up in the ER with heart
problem… also muscle twitching, psych symptoms. could not find my way to
the family doctor the next day. absolutely terrified. found the quinolone
site and started researching. continued exercising etc. (I am a lifelong
vegetarian so I have not had the added “bonus” of quinolones in chicken,
beef, fish etc. ) thought if i exercised i could get it out of my body
quicker.
thought i was better then the neuropathy began in earnest as well as visual
problem in right eye continuing, then panic attacks as well. also tiredeness
and mental confusion off and on. tried SAM-e for a short time…. for mental
symptoms as well as Tums as suggested by Dr. Flockhart to try to absorb extra
Levaquin still in system. (I am sure you have read that theory.) Also began
using a salt-baking soda rinse for sinusitis suggested by my ENT to stay off
any other antibiotics.
the neuropathy worsened and began to spread throughout my body. no sensation
was right. hot felt cold. cold felt hot. wet felt hot. felt like I could not
sweat. all typical medical tests were normal, except I had a low sed rate.
not enough to alarm them. had EMGs and MRIs and CAT scans. ER docs thought i
was crazy. Family doctor thought neuropathy was menopause hot flashes (Made
me laugh). i tend to believe I had vasculitis, which Johns
Hopkins says is only diagnosed through tissue biopsy…never had that. some
who have had nerve punches have found they have small nerve fiber damage (EMG
will not find this… punch biopsies done at Hopkins… not sure where else??)
had strange head pressure, not a headache, just an overwhelming sense of
fullness like I was a balloon. neuropathy began in cheeks, spread to
forehead, down neck and eventually all over body. oddly enough hot showers
were the only thing that helped and then only enough for me to get to sleep.
had to resort for a couple of nights to narcotics from old dentist visits.
resisted taking Neurontin which a neurologist suggested, tried alpha lipoic
acid, a supplement suggested on the Mass. General Neurology site neuropathy
web board as a possible assist. then became afraid of ALL pills…neuropathy continued
through May of 2000; visual problems and mental confusion also continued.
panic attacks worsened. gradually over summer 2000 felt better…
i pray to God it is all over but i never say never. I don’t know what really
helped but you can see what i tried… i continued exercising no matter what
(got two new dogs in the Fall of 1999 which needed walking no matter how bad
I felt!). i hesitate to tell you that if you have severe muscle/tendon pain
for fear of a rupture but I do think it was what saved me both mentally and
physically….
9) Another short recovery story—“Hey B…I’m actually feeling pretty good at the moment. I’m going to attempt to do a 10 mile race on Sunday – I’ve recently pushed up my mileage to see if I
could do this race. I ran 10 miles last weekend and all was well. I clearly
remember in the first few years after my Levaquin experience, I seemed to have
tendonitis in many areas of my body. I seemed to be prone to injuries and
inflammation. That did get better.”
10) I saved a lot of emails from people over time that mostly or fully recovered from their floxings. I will try to post a few for the benefit of the group. Here is the first- I am pleased to hear from somebody from the forum again. It´s been more than 4 years now since I took the levaquin. As far as I can tell my tendons completely recovered. I would say from the second year on even under training conditions like jogging or bicycling I canot differ between normal muscle pain after workout (which was normal ) or possibel tendon problems. In daily life, I do not notice anything.
I did not undergo any treament, did not drink a lot of water,no magnesium etc. as suggested in the forum. It did not work for me. I still have from time t time sleeping problems, but it is endurable.
11) One more email of recovery, I will stop unless folks want to see more– B,
>”I first took Levaquin in August of 1999 for 3 weeks. I noticed no problems
>at the time but as I look back I now know that joint pain in my fingers and
>toes was just the start. Anyway, I was given another round during the first
>2 weeks of March 2000. After completing just 12 days of that I had to stop
>and shortly thereafter my nightmare began.My symptoms included heart
>palpitations, blurred vision, tinnitus, neck and jaw pain, headaches, joint
>and muscle pain and aches, twitches over my entire body, extreme
>nervousness, confusion, severe depression, insomnia, tingling and burning
>sensations on my skin, weird swallowing sensations, chest pains, and
>weakness and fatigue that was just unbelievable. There was more but that
>for the most part covers the major symptoms.
>I too was always a very active person. I used to run 10 miles 4 to 5 times
>a week. But after this episode I had to give up all exercise for a while.
>The fatigue was too great. I went to dozens of doctors and specialists some
>of which were hundreds of miles away but no one could really help. But
>anyway after the first 6 months things started to improve slightly and now
>after 2 and a half years I lead a normal life. I still have a minor episode
>of fatigue every now and then, and also some joint pain, but the episodes
>don’t last long and they do not hinder my life. I don’t think I will ever
>be able to do as much as before, but I am more active than most people. I
>run a couple of miles each day, I workout at the gym with weights, and take
>martial arts classes. So I am very active compared to most people but not
>as active as I used to be. At first though, my entire life came to a
>screeching halt.
>I think the key to recovery was the twofold: First, I took real good care
>of my body with high quality supplements, and ate right. I also exercised
>as much as I could. Sometimes it wasn’t much but I did what I could. I
>learned to recognize my limits and didn’t push past them. But I didn’t give
>up at the first sign of weakness either. I just kept doing things and
>eventually things have improved. Hopefully, I will keep improving until
>there is no longer any sign of this problem. But I am satisfied with where
>I am. Hopefully, your recovery will be faster. But please write back and
>let me know if there is anything else I can provide as far as information
>and let me know how you are doing.”
** 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.
Thank you for providing many wonderful stories! These provide so much hope for those of us in the initial stages of toxicity.
Tara, my email is caballoazul@hotmail.com. I’m almost 4 weeks after being floxed. I agree stories like these provide hope. If you wanna email each other for venting, or support, it will be nice. thanks.
Hey!
May I ask how it turned out for you?
Did you heal?
How bad were the symptoms and when did they peak/get better?
Regards,
Mark
I agree that this gives people hope. I was prescribed Cipro in February of 2015 for a urinary tract infection. The ARNP prescribed it before she read my UA results. I ended up not having a urinary tract infection and was told to go ahead and finish the prescribed dose. Needless to say I have been floxed. For the first few weeks I had stomach and chest pains. These subsided after eating clean and taking turmeric, krill oil, probiotic, cholera, and a multi-vitamin. After a couple of months I began eating not so “clean”. Sugar, beer, and other junk. Now I am feeling neck stiffness and head pressure. I am hoping that getting back to a clean diet will take care of the neck and head issues. The success stories are wonderful to read. Please pray for me. Thank you.
JC – hopefully you have the notify me of new comments via email checked and see this – since the post is over 4 years old. I too have had issues with a very sore neck – started a little over a year ago; lots of neck popping. This is getting better but about 6 months back the head pressure started. It is better than when at its worse; but cycles a lot and really impacts my work. I am nearing my 4 year mark for floxing and would basically consider myself well except for the head pressure. How long did it take for yours to go away. Was there ever anything you found that helped.
THANKS
Hi,
Did you catch some experience or info about testosterone replacement therapy.
I’ve been on it but since I got the 10 days 2x500mg cipro I was anxious to get my next shot even though low testo also causes depression and weak muscles and tendons…
Hope you can give me some info.
Regards,
Mark
Hey B, why no chicken or turkey?
Hey, B. I am recently floxed and had just gotten a new job and have my first baby on the way. I’m about a month an a half out and it’s TREMENDOUSLY hard to deal with the symptoms … They were staying stable but, as if two days ago, emerged stronger and with new pains as well. I’m scared to take any medicines because u simply have no doctors to turn to to tell me what will interact poorly with being floxed and what won’t . Do you happen to know if I can take an ssri or a benzodiazepine drug to at least stop the crippling mental part of this? Do you know of any people who might know better? Thanks and your article was a bright point in my day… Currently in bed with worsened symptoms
Hi phantom,
Could plz tell me how r u doing now?
Have you recovered
Hi. I am 2 mths out an physically I can get up but just have no energy and I have horrible cold feelings in my calves an Achilles. Mentally I have extreme anxiety an depression which are there most days but saturday an yesterday seemed to have not been there so im hoping things will get better with time. Right now I basically eat whatever, although I do have bad gi issues and have lost a lot of weight. I was on cipro 500mgs/2 a day for 7 days. The head pressure seems a little less although I do have headaches almost daily. Insomnia seems to be abating and I have tinitus and extreme dry mouth and eyes. Im recently engaged, but now am out of work and living at my parents bc I cannot do anything for myself. My current supplements are magnesium, probiotics, and a b vit supplement. I rly just am at a loss at to whats hapnd to my life and have been at the point of suicide quite often, which is very out of character for me. Ive noticed pain meds or any other kind of meds make the symptoms and especially the anxiety much worse. Im a strong person and am religious but some days I just feel like I cant take anymore of this and other days I feel stronger and like myself mentally again. I also take apple cider vinegar 2 a day n oral glutathione. Im interested in the glutathione ivs. Any feedback would be great and would love to email or speak with some ppl who have recovered from this.
BW, I am a fellow floxie and saw your post and wanted to write and tell you it will get better! Many things you have gone through I have experienced. I am still struggling but things are much better. I did Glutathione IVs and not sure if it helped but it probably did. I have struggled with suicide also but it always has left! so I really think it is this demonic syndrome hitting a certain part of our brains. Fill your body with good foods and try and laugh and get your mind off your Pain. It is hard to do but it has helped me. Not sure if this helps but I felt lead to write you. God Bless!
Thanks brotha. Im 3mth out now. Been gettin the glut ivs which make me way worse but a few days later im much more clear headed. Gonna go after the gi issues next, rt now im on probiotic an kefif, an organic meat. Doin smoothies for fruits n vegs. Coq10 st johns wort n gaba. I dont rly know what im doing just hoping and praying for something to help me. I rly dont care about my body all I want back to normal is my cns. How far u out troy?
i am 2 months out and have very similar symptoms, how are you doing now, and what has helped your recovery?
Hi BW,
Plz let me know how r u doing cuz am newly floxed and I hv similar symptoms
Interesting. Could you kindly tell me how the insomnia started to abate?! Mine began gradually (two weeks after stopping x2 Cipro 500mg for 2.5 days) and has gone up and down. Some evenings it takes me two hours to fall asleep and on others it can take four hours and I get as little as 4 hours of sleep! Am desperate to overcome this debilitating side effect and the intermittent anxiety attacks which are also horrendous though tolerable, especially if they abate!
Have you recovered
Hi BW, I am at 15 months out. My main problems are brain fog and fatigue now, my spine quivers every night but getting use to that. My insomnia, tingling and numbness, muscle pain etc. are 95% gone. I also pray everyday to have healing but trusting that it will happen in time. Let me know if you have things that help your mind being clearer. I have not had a clear day in 15 months. but somedays are maybe 30% fog compared to 90%. I am going to start smoothies after Christmas once I get a Ninja blender. Take care and God Bless!
Hi Troy,
Here are some things that have helped to clear my mind – https://floxiehope.com/2014/04/15/healing-my-brain-after-cipro/. None of them are “big guns” and they all require some time to kick in, but they are what helped me.
Some people have noted some interesting things about nootropics. Looking into nootropics may be something to do.
I take lots of fish oils too. They are reported to be helpful for brain functioning. I went on a date with a guy who works for a company that produces a nootropic and he said that krill oil is even better than fish oils.
Did anything help your insomnia, tingling, numbness and muscle pain?
Take care and God bless back to you!
Lisa
Hello Troy,
How long did it take for your tingling to go away? Also, did you have tingling in legs and arms also?
Best wishes for your continued recovery,
Dolores
Hi Dolores,
I had tingling non stop from months 2 through 6, but it has slowed down but still have it almost everyday but only for a few seconds each time. So my arm, leg, side might tingle for a 4 to 5 seconds and then go away. This might happen couple times a day to couple dozen times a day but I know it is getting better compared to what it use to be. So that is encouraging! I pray that you will recover soon!
Troy
How are you now
Hi Lisa,
Great to hear from you! Thanks for the information. I just ordered krill oil and have lecithin from reading your suggestions before but stopped taking it. I am going to start it up again. I think i counted 40 bottles of different supplements on my desk the other day so forgot about Lecithin.
I wish I could say what helped me with insomnia, muscle pain, and tingling and numbness but they got a lot better 6 or 7 months after being floxed and keeps slowly getting better. i think that is why I am surprised my brain isn’t clearing. I have taken most of the common supplements that many floxies take so they may have helped the symptoms that improved.
I have no stomach troubles but read how fixing the gut might be the key to helping the brain. Have you read anything on this?
Thank you for being such a great support for me and many others!
Troy
Hi Troy,
The connections between the gut and the brain are fascinating! I have no doubt that more and more information about the connection between those two organs (the microbiome is now being referred to as an organ by many researchers) will be uncovered as time goes on. Here is an interesting article that is a start. http://www.apa.org/monitor/2012/09/gut-feeling.aspx Also, here’s an interesting article about how the microbiome affects the blood brain barrier – http://neurosciencenews.com/blood-brain-barrier-gut-microbiota-1558/. FQs also downgrade gaba receptors – http://www.pharmacologyweekly.com/custom/archived-content/pharmacotherapy/118. I’m not sure if that has anything to do with the gut or not. A fellow floxie, Terry, has some really interesting information about healing the gut on his web site – https://gettinghealthiernow.wordpress.com.
I hope this helps!
Regards,
Lisa
B, I don’t know if you’re still commenting on this page, but just wondering if your vision issues got better? I’m 6 months in, and everything seems to be worsening, including my vision!! Hope this is not permanent….I’m really freaking out, which is making everything worse!
B, you said you had collected hundreds of recovery stories . Could you post some more? We all need them !! I reread the ones you posted after your story constantly . I hope you are well –
What a wonderful post. Lots and lots of good hopeful reading. Thank you so much!!
I am interested to know if the visual issues will improve also. I notice if I just rest my eyes when they seem fatigued it seems to help. I had a couple of days where my eyes felt ridiculously heavy.
I was on the computer one night and was having pain in my right eye, so to be able to continue working I just closed that eye and used only my left one. It was late, so I shut off all the lights except the hallway bathroom light and went to bed. As soon as I shut off the hallway light I noticed that I could not see out of my “left” eye…the one I was using while working on the computer. I noticed that if I closed my left eye, I could see in the dark “normally” but if I closed my right eye, I could see bits and pieces of things, but I could not see 90% of anything. That only happened the one night, but it was very strange.
I have noticed though more of a strain on my eyes than vision loss. If I read or if I am on the computer for very long and get up, everything is a little blurry. I do use my reading glasses when reading. Normally it only takes a few seconds for my eyes to readjust after taking them off. Right now I have to literally close my eyes for a few minutes to make a difference.
I started Levaquin IV while I was in the hospital for pneumonia and hypomagnesemia (Low Magnesium). I was getting it IV for 4 days, then by mouth for 7 days at 1 500mg pill per day. I was also on Methylprednisolone (steroid) for several weeks, having 3 dose packs and solumedrol (same thing but IV) for the same 4 days I was in the hospital. From what I understand using the 2 together spells disaster for some people.
Side effects I had: Tremors, twitching, tiredness, weakness, tinnitus, and mild pain in Achilles Tendon flushing.
I did feel my left Achilles tendon have a little pain, but I stayed off of it the best I could and babied it. I am just over 2 weeks post meds.
The first day I was home I felt great but was still on medication. The day after, I started feeling faint and weak which gave me anxiety, so I went to stay with my parents for a few days which really helped. I went home a day after taking my last Levaquin pill.
I think being alone really makes you focus on how you feel. I have a son who has Down Syndrome, so I am not “really” alone, but having other people for emotional and physical support REALLY helps!
It might have been about 3 days after I ended Levaquin that I started to feel my Achilles Tendon feel sore…just sitting and doing nothing. I tried to find the most comfortable position for the tendon and kept my foot there…this was not necessarily the most comfortable position for the rest of my foot though but I didn’t want to rupture it, so I did what I felt was best…and now I don’t feel hardly anything abnormal with the tendon.
About 4 or 5 days ago I started feeling a vibration going through my body and also started having twitching in several parts of my body, ie; fingers, arms, legs (in different areas).
At first I thought the tremors (vibration) may have been due to anxiety, but my anxiety pills did not relieve them very much…maybe a little. I was waking up with tremors, so really, I doubt it was anxiety. I was admitted to the hospital for magnesium deficiency, which does cause tremors and twitching, so I went back to the E.R. 2 times and both times my mag levels show normal. But I did notice that I had A LOT of levels out of wack! Some high, some low..but there were many. I am an RN program drop out…went until just before my last semester then quit…hated it, and was getting panic attacks when I went to bed at night…they stopped after I quit.
Anyhow, I always ask for my labs when I get them and noticed that my mag was normal but on the low side. I did learn that the labs for mag are not reliable at all and hospitals do not do the test that does actually give an accurate reading. So I thought that the tremors and twitches were due to low mag since they are a symptom of low mag. Also, I was on steroids for several weeks which deplete magnesium stores, so I have been taking supplements for the last few days. I research everything and realized the mag I’ve been taking is not the best for absorption. I am still researching which is best. Many people say that the Doctor’s Best brand is best so I tried it and got increasingly fatigued. I took it before bed and woke up feeling like jello and I only took 1 pill…the serving size is 2 with 2 daily servings a day recommended. If I took 2, don’t know if I would still be here, lol. It’s now evening and I still feel very weak, more than before I took it.
I went to 2 hospitals and both said mag was normal…so this must be from the Levaquin. But I’m still not ruling out magnesium. Several websites I found on the subject written by MD’s have found that the normal test is not reliable because it only measures 1% of magnesium of the body in serum. Magnesium is in every part of your body and when you are low, it will still rob mag from the body to make sure the serum mag is normal which is why it is not reliable. Low or High mag is fatal and is one of the many reasons for heart attacks and strokes. 3 weeks ago I went to the E.R. for chest pain, the EKG diagnosed my rhythm as being possible cardiac infarction…possible previous heart attack. The findings of course were low mag.
So at 6am I woke up and noticed that the tremors and twitching were gone…but I felt like melting jello too. It is almost 14 hours later and I still feel extremely weak and the tremors are light and have had a couple minor twitches.
This whole experience is nerve racking! I want my life back! Just trying to make a meal for my son is difficult. We’ve been eating out, which is expensive. All he wanted me to do earlier was to peel and cut an orange for him, cut a couple strips of pepper jack cheese and put a bit of cranberry sauce in a bowl for him and that was almost too much. I felt better yesterday before the stupid magnesium…I do have to say that I carried some heavy bags for an extended period of time which made me very sore last night and even though I felt like jello (weak) I was still sore at 6am, worse than last night…however, I went back to bed and woke up around 9am feeling much less sore, but still like a wet noodle.
If anyone can comment when they stopped twitching and having tremors I would really appreciate your input.
If anything sounds a bit incoherent or screwy I apologize, I’m just not feeling that great today.
hi janine
how are you doing? I am having the tremors too did itey ever go away?
Im not sure if you check this site anymore, but if you do please let eme know.
Msrie
To begin with I’m a healthy 28yo medical student with BMI 21, no smoking and I do lots of excercise and eat healthy.
I took levofloxacine for pneumonia (I specificly wanted penicillin but the doctor thought otherwise) in March 2015 and so I took 500mg 2 times a day for what was supposed to be 10 days but I had to quit on day 6. Back home we dont sell Levofloxacine (Denmark) so I really had to google around to find out more about the drug.
2 hours after my first dose a watery diarrhea started and kept on for most of the days (got better with probiotics). But what freaked me out was that 4h after the first dose my thumbmuscle started twiching, all the way from the lower arm. This got worse and worse, and I felt literally like shit the following days, really weak and dizzy and could barely walk. I started having twitches in my buttocks, cramps in my foot and the last day my tounge was affected. At this time I had made enough internet surfing that I realized it must be the drug (my prescription didnt have twitches on as side effects so I didnt connect them at once – this was in Switzerland) and I quit it at once. I had ciprofloxacine severals times before without any problems so first I really thought it might be the superinfection following a bad flu giving me everything else than the diarrhea.
Now it’s been 3 months and the thumb is still twitching, on and off but almost every day. Dizzines, weakness and a sense of trembling which I had during my illness feaded out 3 weeks after I stopped the drug. I’m not sure if I’m just more aware now, but I feel like other muscles twich more now. I’ve been prone to minor twitches before (in the eye, buttocks) but never this persistent. I’m lucky I feel like my performation hasn’t gone down and I still do as much sports as before and feel strong and I have no sense of muscle weakness.
I hope these twiches will go away eventually, they are minor but it’s a horrible feeling not being in control of all your body. I just wanted to share my story so other people react immidiately if they get neuromuscular or other side effects from Levofloxacine – it doesnt matter how fit or young you are apparently.
Love from Denmark
Mine is a strange story,i’m 23,female. I had muscle weakness for two months and was so misdiagnosed by every doctor till I found one who tested for brucella. Turned out I had it and a bacterial infection in my blood.So he gave me medication by drip IV and prescribed levofloxacin 500mg twice a day for 10 days. From the very first night i had terrible pain in my right achilles tendon which i told the doctor about but he said it was the brucella leaving my body. Anyway it progressed, muscle twitches and pain that made me think I was going to lose my legs. Yesterday I saw a doctor who immediately put me off the meds and told me to look up its effects on the internet. Thats when I discovered floxie toxicity. Tried to ask him for the supplements ive been seeing on floxie hope but he just told me to quit being paranoid. Today though the pain and musscle tightness is in both my feet, my right calf and buttock and in my wrists. I’m going to buy all the supplements I can possibly afford and pray for healing.I’m not even sure the brucella is completely out of my body so I’ll go back to the doctor to ask whether i need other antibiotics.I’m hopeful and give God glory and thanks for leading me to this site and many others like it.May we all be healed in Jesus name.Love from Kenya to you all.M.M
Hello Fellow Floxies,
I love reading the hope stories, they have gotten me though some really tough spots over the past year. First a bit about my story (though my story is very similar to all the others).
I was a healthy mom of two (2 year old and 10 year old) working and getting my masters degree, then I took Cipro (December 2015) for what they thought was a UTI (turned out it wasn’t). I was put on Cipro for 8 days. Looking back I think I started having symptoms at day 3 but didn’t put it together until day 8, when I felt like two needles pierced the bottom of both my feet at the same time I realized I might be having side effects from the Cipro. Later that night I felt tingling and numbness in fingers and my leg muscles felt really tired and weak. By the next day my entire body was affected and I felt like something was really really wrong. I went to the urgent care and was blessed that the random doctor I got had something similar happen to her after taking Levofloxacine. She said she had a tremendous amount of pelvic pain that lasted for about 3 months. That gave me hope through the worst of it (I hadn’t yet found out about “floxies” on the internet). The first months my symptoms consisted of the following:
(Month 1-3)(January-March 2015)
Severe joint pain, cracking and popping (all over)
Severe tendon pain all over, I could not drive, lift a jug of milk, or pick up daughter
Tendons felt really tight, like rubber bands stretched too tight.
Low level of muscle pain and weakness
Nerve issues-burning, tingling, crawling sensation, needles,
Weird sudden sensations of hot and cold
Blue fingernails
Pain in jaw and ears
Severe eye pain, both light sensitive and just aching
Thick throat feeling
Panic attacks
Extreme anxiety
Room spinning when I laid down
Heart palpitations
Muscle twitches in legs, eye, face
(Month 4-6)(April-June 2015)
By three months out the panic attacks had stopped, the joint and tendon pain had improved slightly, the muscle pain was mostly gone and the ear pain and jaw pain was gone.
Relapse 1- seemed to involve the vagus nerve (lasted 6-8 weeks)
Heart fluttering, Heart racing, chest pain, shortness of breath, indigestion, bloating, heartburn (none of which I had previously)
weakness, lightheaded, shaky feeling, dizzy
Relapse 2 – pelvic pain related to sacral nerves (lasted 10 weeks)
deep pelvic pain
pinching sensations in pelvis
rectal pain (like a rock was in my rectum)
constant feeling of having to urinate
heavy bloated feeling in pelvis
low back pain
(Month 7-12)(July-December 2015)
Relapse 3 (lasted 8 weeks)
Pelvic Pain: Same as relapse 2
Currently: A lot of eye pain still, some heart fluttering, some nerve pain, joint and tendon pain comes and goes. Thick throat feeling comes and goes. Issues with taste, metallic taste, and some food tastes bitter (like chocolate). I am more sensitive to smells, foods, motion sickness, altitude sickness, which I never had issues with before.
I am almost a year out and learned the following:
-It is always two steps forward and one step back.
-Staying positive through the relapses is really hard but I read the floxy hope stories and try to fill my time reading anything that makes me laugh and feel happy.
-I try to get a full nights sleep, and reduce stress.
-I drink a lot of water and take Cq10 and D3 supplements.
-I get what exercise I can but I do it slowly and carefully.
I still see doctors when things get really bad but I have spent a fortune on tests and haven’t gotten any answers. I don’t trust pills anymore. There are moments when I still worry about the long term damage, or wonder if I might have cancer and just be mistaking it as the Cipro. I would say I am 70 percent better when I am not in the middle of a relapse. Relapses have lasted a a week to two months. I have pain everyday but most days it is manageable and I can do most things.I think you just get use to a new normal. IT GETS BETTER!!!!!
Jen
Thank you so much, Jen! When you want to post your full recovery story on this site, please don’t hesitate to let me know through the Contact link. Yes, it does get better. Thank you for sharing the hope!
Hi Jen, how are you doing now? Hope all is well.
How are you now
jen, how are you? any better? thanks dan.
Hi, I’m trying to post all over this site to let EVERYONE suffering from this horrific, debilitating affliction know that I think I found my CURE!!!
Go to homepage (located at top of page) and read my posts starting on Feb. 2nd and the ones following.
It’s too much to write again
For those searching for Joanneg’s treatment, she posted on Feb 2nd on the home page commentary that she discovered the product Colostrum which has helped her leaky gut symptoms that in turn have improved other issues she was dealing with. She says, “my stomach isn’t wrenching, and even my joints are sooo much better. Not only that, my mind feels bright and happy. It took that ugly depression and doom and gloom away. And I know it’s the Colostrum because I stopped everything else.” From another post she states that she’s “been using Immune-Tree Colostrum 6” as her preferred colostrum product.
Others have had some improvement with this product as well, but the results seem to vary. Colostrum doesn’t appear to be a magic bullet, but another tool in fighting this toxicity. The consensus among many floxies is that fixing a leaky gut will allow one’s body to repair itself much more efficiently, and theoretically, colostrum is a product that can be beneficial in fixing leaky gut. Even if you don’t feel you have digestive problems, treating the gut with good food seems to help many floxies. I’m still new to all of this myself, and I’m not one who posts much, so I’d recommend that other new folks to this site post general questions on the home page commentary, as there are many wonderful people with much more experience in all of this than I who check that page daily to see what they can learn or how they can help others.
Hi… I am struggling after taking 6, 500mg of levaquin. Knee pain, ankle and feet pain. It’s AWFUL! I saw an ortho and homeopathic dr. The homeopathic dr has me on glutathione, fish oil, flax seed oil and omega 7 for joints. I’m wondering if adding magnesium to the mix is too much. He seems concerned about hyper magnesium and said it can lead to more collocations, but, from what I’m reading it seems to really help. Any insight? How much is safe to take, if any, with what I’m on? Thank you!
I’m about 8 months from when I took Cipro I’ve gone through a lot My biggest problem is the tingling and muscle weakness It seems to be off and on Can anyone tell me if lifting weights agravates this Will not working out for awhile help I’ve also had feelings of not wanting to go on I am a Chritian and I have a husband and 2 kids do I would never do that
I also wanted to mention with my tingling and muscle weakness I have periodically tremers and seizures Seversl months ago I felt I was having a stroke and went to the hospital Had a MRI and a MRA nothing showed up Anyone else have these
I need to hear from anyone that has been Floxed with a pre-existing condition of osteoarthritis. I was Floxed in March 2016 terrible pain ,muscle,joints,thought my ADHD mess stopped working -they were I just now had Floxin brain. Due to tendon weakness my osteo arthritis allowed my right knee to grind bone on bone and by August the pain was so severe I required a total kneel replacement. I am one week post op and I think I am having a full Relapse I have lost my flexibility and the pain is seveve. Needless to say I am exhausted and too tired to be sad. My nursing staff and doctors don’t understand “Floxed” and think I am nuts. Who has been through those? I am twitching and hands jerking. I need to keep progressing or insurance will kick me out of rehab. Please email jkmmartin@msn.com.
Hi John,
I am so, so, so sorry for everything you’re going through!
Here are some things that may help to keep your insurance going:
5/12/16 – Fluoroquinolone Antibacterial Drugs: Drug Safety Communication – FDA Advises Restricting Use for Certain Uncomplicated Infections – http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm500665.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery
7/26/16 – FDA Drug Safety Communication: FDA updates warnings for oral and injectable fluoroquinolone antibiotics due to disabling side effects – http://www.fda.gov/Drugs/DrugSafety/ucm511530.htm
July, 2016 Drug Safety Labeling Changes – http://www.fda.gov/Safety/MedWatch/SafetyInformation/ucm514705.htm.
Here is a post with additional articles to show your doctor – https://floxiehope.com/2014/05/20/articles-about-fluoroquinolone-toxicity-to-give-to-your-doctor/
Here is some basic advice for approaching this mess (be sure to read the comments too) – https://floxiehope.com/2015/10/12/im-floxed-now-what/.
That’s a lot of reading for you – sorry for not having more simple answers! Hang in there though, and know that healing is possible. It was horrible that your doctors gave you a fluoroquinolone when you have existing osteoarthritis. There is really nothing okay about that. Recovery happens though, so please hang in there.
If you’re on facebook, you may want to try this group – https://www.facebook.com/groups/floxies/.
I also recommend commenting on the home page of floxiehope.com. More people look there than on the individual stories.
Have hope.
Regards,
Lisa
How do I find if I have any legal possibilities the bills are big and still can not work
B, what happened when you tried steroids? I have relapsed after taking prednisone in September for a severe pinched nerve.
These stories give me great hope. I was just floxed the Friday before this Christmas (2016). I found out I had a kidney infection and was prescribed a 7 day regime of levofloxacin 750mg each. The beautiful pharmacist who filled my script forced his way to the counter and told me if I had the slightest bit of muscle or joint pain to stop taking it. I go home and take one pill. Within 2 hours I’m dizzy, nauseated, short of breathe and have tingling hands and feet. A blessing… at 2.5 hours I throw up. I call my doctor and passed out. 3 hours after I was floxed I wake up with TIGHT tendona and empty the remaining contents of my stomach on purpose. 45 min later my doctor calls and sends me to the hospital. The ER doc assures my 35 year old otherwise healthy self thato one dose shouldn’t be enough to effect me and I should be ok. Well that was Friday. I got a different medication and waddled home on my stiffy legs and went to bed. Over the next couple of days the pain subsided but I woke up to a lovely new symptom this morning. It’s day 5 and my left knee hurt so bad I could barely make it down the stairs this morning and had to wrap it to go to work. Keep in minsome I’m 35, 125lbs and usually run up the 4 flights of stairs in my building to my office every day. I’m an avid horseback rider. This is the first page that has given me hope for a recovery from this incident.
Hi Christina,
You are the first person I’ve read of here that has taken only one pill. I, too, have taken only one pill, just last week. I’ve ached, and had an episode of swollen blurry eyes. I am currently taking lots of Magnesium and other supplements.
I would love to know how you are doing, and what your journey has been like after just one pill.
Hope you are well,
X
Can I please get an e mail or phone number to contact you about this? I would like to talk about my story and what i am going through sounds all too similar. Cipero messed me up bad but I am finally feeling better. My “stool” isn’t the best but it’s better than before. Also my major problem is the muscle twitching. That hasn’t gone away. It thankfully my tendons are fine. I would very much like to hear more if you are interested in talking. None of my doctors or anyone I know thinks anything is wrong with me. I found this website and it’s given me hope.
Please contact me Via e mail and maybe we can arrange a phone call?
mark_sepulveda@yahoo.com
My name is Marcos Sepulveda
I don’t understand why I’m still seeing so many people being prescribed these dangerous drugs. It seems the doctors are clueless. Don’t they come with black box warnings (if they are still available). These drugs should have been banned long ago.
I’m a victim of Levaquin poisoning from almost 9 years ago (August 2008). I was prescribed a week of Levaquin (3-4 pills a day) after my gall bladder surgery. I didn’t notice any problems until I blew my Achilles tendon about 7 months later (March 2009). That was a long slow recovery as I had no health insurance and I couldn’t afford physical therapy. Anyway, I felt almost back to normal almost 2 years later (by 2011) and didn’t feel any residual effects from the tendon rupture or Levaquin until. ….
Around December 2013 I noticed a weakness in my right leg (gastrocnemius of the lower leg). It got progressively worse and severely affected my walking. A few months prior to that I had noticed severe muscle cramps and spasms in both my lower legs, but didn’t think much about it then. Now I believe they were related. I now (June 2017) walk with a severe limp and am unable to walk or stand on my toes. I’m convinced my condition is related to the Levaquin from almost 9 years ago now. I tend to walk more on my heels now because I have no strength in my plantar flexor (calf) muscles. I regularly have pain and fatigue in both legs after walking (even short distances). Some of the stories here do give me reason to have hope, so I thank you for providing this forum.
I had a complete tendon rupture in 2010, seven months after taking Cipro for a UTI. I had cortisone put in it because I was limping, obviously had no idea about the toxin issue, and when it wore off I stood up and it tore 6″..The peroneus tendon to the right of the Achilles.
Now as I write this it is October 2017. Im 62 year old female.
On Sept. 23rd I came home from a Norwegian cruise on which I contacted another UTI.
I was given Cipro intravenously and threw up and then the doctor gave me 10 tablets of Levaquin instead, again never warned me of the side effects.
The night I got home, for no reason at all, I tiptoed downstairs and started to cry hysterically.
The next day I was violently ill, headache, could not move, nauseous, and crying hysterically..I rarely cry, and horrible nightmares, which I never have.
After 4 days, I was taken to the doctor, too weak to drive, and now, as of three weeks ago. I cannot walk.
BOTH ankles are in severe tendonitis pain…….I already had a rupture..and this is when I got on the internet and typed in Levaquin and this entire nightmare of a story unfolded.
I Don’t know how long it will take for the pain to go away. The mental anguish is subsiding, some nightmares still..but I cannot walk now.
I went on the Fluoroquinolone Solution and am following their supplement suggestions, plus a lot of chlorella and icing three times a day and using these braces that give blood flow to the tendons three times a day.
With tendons, and I know from last time..when they hurt you must stay off of them. I just thought I had a sprained ankle for no reason and walked the hell out of it when I got cortisone. The surgeon said it was the largest rupture he has ever seen, and he is the top ankle surgeon in southern California.
This time I am staying still until all pain is gone, and then not doing too much for six months to a year.
It takes a long time for tendons to heal…even with a surgery..I could not walk and was in a cast for months and it took six months to recover.
I am going to sue Norwegian Cruise Line. I see there were a lot of comments from six years ago, but things have changed and there are now thousands of lawsuits.
The doctor never warned me of the side effects. All he had to say was…”Did you ever have a tendon problem?”.
I am aghast at how many physicians I know personally and some of my own, who have never heard of all the side effects..not just the tendons, but the nervous system.
I do not know why that is, but I am spreading the word now.
This is the 2nd time for me.
I am improving by resting, following the supplement and diet regime and taking 20 chlorella pills and a ton of vitamin c, Epsom baths, magnesium oil, and other vitamins.
Sleep and rest..I use melatonin to sleep. My tendons are getting better. You just can’t rush the healing..it takes a year for complete tendon healing..if you exercise before that, you risk a rupture. Take it from one who already has.
Eat well, take the right amount of the right supplements, get some physical therapy, and rest rest rest. Read books, write watch TV. Don’t feel sorry for yourself.
Healing thoughts to all of us. Its the worse thing that has happened to me because I was totally unprepared. Usually, we know we are going to have a surgery, or that we have been in an acident…but we know nothing and the side effects often don’t come immediately leaving us clueless. There are thousands of people like myself who have side effects right now and don’t realize its from an antibiotic. It Took me SEVEN years to learn the hard way. Even the surgeon didn’t ask if I had taken antibiotics…and he is an ankle sports therapy specialist!!!
If anyone you know mentions they have tendonitis..make sure you tell them, and ask if they have taken any of these antibiotics. My husband does, and he told me he had taken them twice. So, there you have it. I am going to fight the system in every way I can. This is devastating.
Heyy B can you please tell me what helped you the most to recover or anyone i got Floxed when i went to mexico on vactions i really regret going to the doctor over therr cuz he gave me Cipro vut i took it onces cuz i notie i felt weak and then i went back to See another doctor n i told him not to prescribe be. Strong medecine then he prescribed me Lavaquin 500 MG ii only took one full dose the first time and i didnt see any bad symtoms only a lil enxiety but not bad i never thought it was cuz of the medeince then i decided to take have of the pill for like 5 days then the 5ths day i took it i fellt bad i wasent sweating anymore and i felted bad enxiety like if the drug was still in me But i felt it inside my head and my mouths was dry i was like its guna go away the next day and it didnt my symtoms got worst my enxiety and my heart rate is very Fast sometimes alot of Mucles weakness my back hurts alot and feels weak pressure in my head sometimes i kinda stopped wen i took nac but i feel like nac isnt helping me cuz my mucles get spasm and i also feel weakness in my legs and hands they feeel sore and i have bad insomnia headaces can Anyone please tell me wat has helped. To recover please itll help me im only 21 and im expierencing to many syimtomes beacuse this medecine doctors domt help im guna see a neorologist on the 30th but anyone please email me cuz. Sometimes i feel like i cant take this anymore my email is alexandravalencia990@gmail.com
-alexandra
For the person who said they could never eat chicken or turkey…I am wondering why? What did that make worse? I think I have problems with those meats also after Levaquin. Could you never eat these meats again? I’m finding I cannot eat many of the foods I once ate(grains, dairy, eggs, soy, and corn).
Hi Michele…I have the same problem I can’t eat chicken(antibiotic free too)now after Cipro,all my symptoms get worse…..do you have same problems with other kind of meats or fish?
Bet:
My body seems to be in an “over sensitivity” mode to everything I eat. When I first realized that I had a problem with meats was after I had testing from a well known hospital. Apparently my body wasn’t breaking down the protein. Now I try to eat strictly organic and from a prescribed an anti-inflammatory diet. The diet and the supplements have helped make my body stronger since I lost a lot of muscle mass however these things are not really fixing the underlying problems that have been caused by this drug. My muscles in my back are in knots which is I believe caused by dehydration linked to this drug. I drink plenty of water daily. Symptoms worsen one day and then seem to minimally improve sometimes. I just keep hoping for the best. Thanks for your comment. Stay strong.
I had the flu in the beginning of March for 3 weeks and then came down with a secondary sinus/chest infection afterward. My doctor gave me Levaquin 500 2x per day, also a steroid inhaler because I could not clear my airway and had a terrible cough. I live in Hong Kong where the doctor gives you your meds in the office. And you are not given a box with a warning, you are given just the number of pills you need in a bottle or plastic bag. Nor is there a chance to see a pharmacist for the drug counseling. I asked her if the drug was safe, and were there any side effects. She said no. It was safe and I would be fine. About 8 days in, my left hip became very sore, especially at night and then my left shoulder started to ache. I had no idea this drug could be the culprit. After reading on the internet about FQ toxicity, I went back to see her. She had never heard of this before.
So I am about 5 weeks out and have pain in my hips down my thighs into my knees, and sometimes my shoulders. I have had the burning sensation under my skin on my chest, which comes and goes. Luckily I have not had any eye pain, GI issues or anxiety. Knock on wood. I have read everything I can on this site and FQ Research.
I am taking a good multi-vitamin, probiotic, krill oil, magnesium and Curcumin. I start my day with warm lemon water and then have pineapple for the bromelain. I take Epsom salt baths and have found that incorporating essential peppermint or lavender oil into coconut oil and rubbing that into my sore places helps.
I hope we someday the doctors will agree this is a problem and do more research to find a cure.
Hello Michelle, how are you now? I’m out for similar time (2 months now) and new symptoms have appeared (but some are gone) So I’m little bit confused, maybe next cycle…
It has been 16 months since I have had Avelox and Prednisone for a sinus infection. I have lost weight, no hunger ever and have developed rapid gastric emptying. I eat because I know I have too. The biggest problem is the head and neck pressure. Is there any help for that? I am beginning to give up as I have tried everything. Now the doctor wants to give me a steroid injection in my neck to help the headaches. Has anyone tried this?
I keep sinus pressure and swelling around the eye since CIpro 9 months ago. Never had any issues like this prior.
Ronna – how are you doing with your head and neck pressure. I am nearing my four year floxing anniversary and while I still have several symptoms these are the primary ones still having a major impact. Started with a sore neck for me nearly 18 months ago then the head pressure started about 6 months ago. The sore neck is mostly gone maybe a 1 or 2 out of 10 on most days; but head pressure still really bothers me. It comes and goes during the day usually getting better later in the day but not “normal” other than for brief periods.
Hopefully your issue has resolved – don’t see you posting regularly. If so, how long did it take to resolve; and did you do anything that you can track to helping other than time?
Has anyone here taken only one pill, I am curious to know if dosage affects symptoms and duration?
thank you, all….at 78, I keep looking for histories of folks my age who’ve been floxed [love that expression]. My history began 8/9 yrs. ago, after cipro, then levaquin. Soon after meds had many of the pain/muscle twitches/swelling of joints others have encountered. After several months developed achilles pain, put in boot for 2 months. Following this I began research and knew what had caused all my problems. FINALLY, after an article in an orthopedic journal, my PA agreed with me. Since then have diagnosed 40% nerve loss in right leg, and tendon damage in right leg. Recently, an MRI showed severe partial tear of achilles tendon. Now more research for surgery[?], or not. Still on the fence about that, considering my age, good health, activity level [never met a garden I couldn’t conquer, spread my 50 bags of mulch this spring]; and, also researched recover and re-tear/rupture rates. IS THERE ANYONE NEAR MY AGE OUT THERE?
I’ve been pretty much ignoring some of the symptoms I’ve seen here…altho I’m certainly aware I’m considered elderly and “invisible”, I’ve found humor to help, and an occasional good cussing. Must also blame some things on that blessed age.
It’s wonderful to find a site for personal info.
We mustn’t give up.
Hi Liz:) I hope you are feeling better these days.
My story starts in 2011 when my daughter was 3 years old. I was prescribed Levaquin for a UTI I ended up not even having. My symptoms began with severe tendonitis in both of my Achilles tendons . I had knots in both calf muscles and always felt like I ran a marathon. I was unable to play with my young daughter without taking breaks because the pain was so bad. I went to an orthopedist, neurologist and a rheumatologist trying to find out what caused myself to go from an active mom to struggling thtough the day. After 3months I collapsed at work and proceeded to be on disability for 3months. I too had MRI”s, CT scans. EMG’s and countless lab tests. It was a rheumatologist that finally listened to my story and symptoms and out of nowhere asked if I had taken Levaquin.
Seven years later Im still battling with chronic pain. This drug ended my marriage and stole those vaulable years of being yoing mom. I tried every possible supplement and diet to aid in my recovery. The only thinh that seems to make a difference is getting enough sleep and stretching. I have finally accepted that the person I was before I used this drug no longrr exists. There are no words I can use to describe how taking Levaquin has made me a shell of the person I once was. I dont think I will improve but my daughter keeps me going. Good luck to everyone in their recovery . There’s a special place in hell for those who profited of the drug.
So you still have achilles pain? Are you able to work? Walk?
hi karen
have you gotten any better? Please let me know if you have improve any so this can give me hope.
Marie
I am so sorry this happened to you, and yes these people deserve hell for that they’ve done to innocent people. I too was given CIpro, and didn’t need it, ended up having painful bladder syndrome from eating spicy foods/alcohol/coffee. I think the thing that helped me the most was cardio exercise. In the early days , each time I worked out I would have pain, even had a few spider veins pop (leaving blood spots) while I lightly jogged. I lightly jogged to make sure I was not slamming down my ankles too much. I pushed through the discomfort, and I really believed it helped work a lot of that mess out of my body. I too stretch everyday, and I think that helps keep things from getting too stiff. Now my only symptom is odd inflammation under one eye. Eye doc said it was an immune response. I hope you can atleast manage now. X
Would love to speak to people who have recovered. I’m in my 5th month and was doing quite well but the last 4 weeks I have had a terrible “relapse”. Feel so incredibly tired and weak. Gastrointestinal problems too.
I have recovered completely and I will still say every 4-6 months now I have a small relapse
If you need to contact me plz do so
mark_sepulveda@yahoo.com
I posted on this blog in 2017 and it’s now 2 years post flox and I feel so normal again.
I took over (30) 200 mg cipero pills
I was messed up for a good solid year but I’m finally normal again and It feels amazing!
I don’t want to brag about it because I know others are going through so much.
Bottom line is I’m back and I hardly give It a second thought but once every 3-6 months depending on what’s up and symptoms.
Reach out to me and I will deff give you a min of my time and tell you what I did to help myself get better. I’m not a doctor I’m not looking for your money. But I was there once and I got an e mail that reminded me of this place and it helped me a ton.
I pray you all feel better.
I know what it’s like guys.
Wishing you all the very best in your recovery.
-Marcos Sepulveda
My e mail is mark_sepulveda@yahoo.com
Still answered an e mail today from someone looking for help. I can give some advice.
I hope y’all are doing okay.
It’s been about 3 years now and I’m 100% better.
Once every 6 months or so I’ll have a small relaps but nothing major anymore.
Good luck and I continue to pray for everyone here.
Be safe
Hello . everyone, Is there anyone go to dentist when they are floxed and at the healing period? I need some advice. Thank you.
Was given Levaquin, four months ago. This was for preventative measure for a prostate biopsy. I had no idea what I was being given, was just told to take it. I asked the nurse to see the doctor, to find out more about the pill. My request was denied. Shortly after my biopsy, my feet and legs started to burn. I never thought it could be that pill that was causing this horrible burning, until I got the bill for that pill, not covered by insurance.I looked up the name of the pill Levofloxacin, and my symptoms started to make sense. I now live in horrific burning nerve pain. It is now in my feet, legs, hands, arms and face. I also have joint pain in ankles, hips and back. Doctors, neurologists, spine doctors all deny that, Levaquin could cause my symptoms. After numerous tests that came back normal, their answer is to take Gabapentin and good luck. Anybody else going through this horrible burning. If so, and you find any relief, please share.
I felt horrible burning in my arms and hands and legs for some time and in my feet around my toes.
What helped me a lot was 3 things.
Daily all vitamin
Vitamin B
Magnesium
Stretching
The burning was the worse after a week of taking it.
Eventually It turned to twitching and then eventually went away.
It took time. Lots of time.
Time mentally prepping myself that it’s going to take a year + to get better.
Keep your head up.
Your okay and It will pass most likely.
If It does pass come back and reply to help others like I have.
I’m 100% back to normal.
John I’ve had the same reaction to that poison. You can contact me if you like. LoeveJrL@gmail.com
If nothing helps specially with sleep and you neck is not in pain, but cracks and you have neuro symptems like tinnitus, light and sound problems, concentration, eys, etc. well I got a functional MRI upright the outcome is, two mayor ligaments holding dance axis ligamentum transversum and alaria are not right anymore. That is a neck instability and can cause massiv sympaticus stress. Modern medicine does not recognize it as illness, but I got another simular report in Germany with direct contact. Wait and hope and be very carefull with neck movement.