B’s Recovery Story – Levaquin Toxicity

 

*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.

42 thoughts on “B’s Recovery Story – Levaquin Toxicity

  1. Tara September 12, 2013 at 4:53 am Reply

    Thank you for providing many wonderful stories! These provide so much hope for those of us in the initial stages of toxicity.

    • o. val. October 23, 2013 at 6:50 pm Reply

      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.

      • Mark June 5, 2014 at 6:22 am Reply

        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

    • JC June 1, 2015 at 3:58 pm Reply

      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.

  2. Mark June 1, 2014 at 9:29 am Reply

    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

  3. Mike June 11, 2014 at 3:03 pm Reply

    Hey B, why no chicken or turkey?

  4. phantomdavid02 July 12, 2014 at 5:13 pm Reply

    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 :/

    • Angie magdy April 17, 2016 at 8:44 am Reply

      Hi phantom,
      Could plz tell me how r u doing now?

  5. BW November 3, 2014 at 1:20 pm Reply

    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.

    • Troy Fichter December 1, 2014 at 9:44 pm Reply

      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!

      • BW December 1, 2014 at 10:18 pm Reply

        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?

    • aaron akemon July 24, 2015 at 11:20 am Reply

      i am 2 months out and have very similar symptoms, how are you doing now, and what has helped your recovery?

    • Angie Magdy April 17, 2016 at 8:47 am Reply

      Hi BW,

      Plz let me know how r u doing cuz am newly floxed and I hv similar symptoms

    • Richard G berg August 10, 2016 at 6:57 am Reply

      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!

  6. Troy Fichter December 14, 2014 at 1:53 pm Reply

    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!

    • Lisa Bloomquist December 14, 2014 at 2:29 pm Reply

      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

    • Dolores O'Gara December 16, 2014 at 11:29 am Reply

      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

      • Troy Fichter December 16, 2014 at 12:44 pm Reply

        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

  7. Troy Fichter December 14, 2014 at 7:27 pm Reply

    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

  8. tricia April 15, 2015 at 7:20 pm Reply

    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!

    • J April 28, 2015 at 7:08 pm Reply

      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 –

  9. Ben May 9, 2015 at 2:30 pm Reply

    What a wonderful post. Lots and lots of good hopeful reading. Thank you so much!!

  10. Janine May 28, 2015 at 7:01 pm Reply

    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.

  11. Janine May 28, 2015 at 8:02 pm Reply

    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.

  12. Fanny June 11, 2015 at 1:43 pm Reply

    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

  13. Jen December 4, 2015 at 9:46 pm Reply

    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

    • Lisa Bloomquist December 4, 2015 at 11:44 pm Reply

      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!

    • Lucero November 18, 2016 at 4:54 pm Reply

      Hi Jen, how are you doing now? Hope all is well.

  14. dan December 24, 2015 at 2:32 pm Reply

    jen, how are you? any better? thanks dan.

  15. joanneg February 4, 2016 at 10:56 am Reply

    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

    • Ryan L April 9, 2016 at 12:45 pm Reply

      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.

  16. Renee May 15, 2016 at 6:38 pm Reply

    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!

  17. Pat June 15, 2016 at 7:34 am Reply

    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

  18. Pat June 15, 2016 at 10:16 am Reply

    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

  19. John Martin August 24, 2016 at 12:35 pm Reply

    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.

  20. John Martin October 6, 2016 at 9:47 am Reply

    How do I find if I have any legal possibilities the bills are big and still can not work

  21. No cipro November 22, 2016 at 9:49 am Reply

    B, what happened when you tried steroids? I have relapsed after taking prednisone in September for a severe pinched nerve.

  22. Christina December 28, 2016 at 8:56 pm Reply

    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.

  23. Marcos Sepulveda February 24, 2017 at 2:28 pm Reply

    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

  24. Ted R June 26, 2017 at 10:48 pm Reply

    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.

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