B’s Recovery Story – Levaquin Toxicity
Floxiehope Lisa Bloomquist December 2015
The following was written by B and was shared publicly on Facebook. I reached out to B to see if it was okay to share his story but I did not hear a reply from him. B, if you get word that I posted this, please let me know whether or not it’s okay. Thanks! Since it was posted publicly, I’m hoping that it’s okay to publish it.
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 stories above are truthful, accurate and told to the best of the ability of the writer. They are not intended as medical advice. No person who submits their stories, nor the people associated with Floxie Hope, diagnoses or treats any illness. The stories above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in these stories.
http://floxiehope.com/b-recovery-story-levaquin-toxicity/
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