Did Levaquin Destroy Me?

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Dec 7, 2007.

  1. joeb7th

    joeb7th New Member

    I posted my beginning story about when I first got all these horrific symptoms on another website.

    Many people commented. A few said that the flu I had before they gave me a 6 day dose of Levaquin was just as possible the main cause of the symptoms I got later taking Levaquin.

    I disagree. When I went to the Hospital ER I had fainted and fell flat on my face, smashed it and broke my septum and knocked myself out with much blood.

    After I was taken by ambulance to the ER I was found to have ( of course ) fever but also higher white blood cell count and low potassium...or what was told to me as " an electrolyte imbalance."

    I also had head trauma.

    Up to this point ( including every second I had the flu ) I had "none" of the symptoms I have now and have had for the last two years.

    I was given two Levaquin tablets right before the ER discharged me, 2 and 1/2 hours after I arrived. Within minutes I had fainted again in my wife's car on the way home.

    They brought me back at the ER and put me in a large curtained "recovery" room with many beds. The next late morning I was given two more of these Levaquin tablets.

    Then, I was discharged again later that day ( with a small bottle of 5 days worth of more Levaquin ) and that first night home is when I first felt these horrific symptoms I have had now for two years.

    Shoulders felt like they were being ripped out of my sockets. Rotator cuff tore on right side. Arms burning hot as well as hands. Then hands would go cold and numb...then back to hot. Internally I was feeling as if I had drank some type of poison. My intestines were rumbling continually like a thunder storm and the pain I felt in my insides ( especially middle intestinal area ) was so sharp and moving and so strange. It was like I had drank bleach!

    I would get stabbing pains there and all over...like electric shocks. I even got these in my head! I would feel prickly feelings all over. I was twitching like I was being stunned with a stun gun. My feet burned and my legs twitched. Also I was having all these paranoid mini nightmares but couldn't sleep! I never had paranoid thoughts and mini-nightmare after mini-nightmare while trying to sleep in my entire life!

    Just as I would about fall asleep, I would get these electric type ZAPs through out my body and it would shock me back awake. Got those all night and they were powerful...again like I was being zapped by some electricity.

    I was also so weak I could barely lift my burning arms while lying down. The next morning I tried to get up and eat some toast and within 15 mintues of doing this my GI tract exploded into pain and I actually atarted going into shock. ( went into pain so much while trying to eat I couldn't for two months. Lost 40 pounds in that time ) I was seeing spots and couldn't breath. Ambulance called and I was raced back to the same ER and told them what was hapening.

    They took my basics and said they didn't see anything, loaded me up with atavan and sent me home!
    I told them about all these symptoms that I never felt with the flu.

    They also asked me what I was taking. I told them Levaquin. Nobody ever told me to stop this even after another 3 to 4 visits to this same ER with these same symptoms. I was never given any adverse reaction material and assumed they knew what these could be. But they really didn't and never even mentioned stoping the Levaquin.

    But my point is...that never, not even at any point of having this flu...did I feel any of these horrific symptoms. It was only about 24 hours into taking this Levaquin for the first time that all this exploded inside of me.

    And one year later when I was forced to try to figure out on my own what triggered all of this, It wasn't hard to go back and take a look at the only chemical I was putting into my body at this time and the only medicine or drugs I had ingested for years prior... Levaquin!

    And when I did my research about levaquin so many things matched it was beyond coinsidence...tendon damage, brady cardia, intestinal inflamation, and on and on.

    How people can keep "trying" to absoove the Levaquin theory when it was the only foreign chemical I took for 5 days and it list all these adverse affects and also says...not be given when patient has been diagnosed with low potassium levels...is just another unfair denial about what happened to me.

    Beware everybody. If your electrolytes get out of balance...tell your doctors NOT to put powerful chemicals in your system unless they know exactly what these drugs do. Unfortunately, My ER docs didn't know this about Levaquin.

  2. skikat

    skikat New Member

    hi joeb!
    i am so sorry to hear that all of this happened to you, but i do believe it.

    everytime i take biaxin, levaquin, ceftin ,keflex, or any strong antibioric, i have so much pain that i can hardly stand it. i had to quit taking them and just take the one that i get from the AMISH people.it works and no side effects.

    but back to the levaquin, i never had half the problem with my tendons until i took it. now i have tendonitis so bad that i cant at times get my fingers or toes to uncurl! and that is not all that wont move. my whole body is feeling like it is eing pulled like a rubber band and i can get no relief unless , sometimes it helps to use the heating pad to relax them a little in th worst places.

    problem is , you would have to have a heating pad the size of your entire body and made to fit! so i know some of what you are talking about from this drug. i wouldnt touch it again for anything.

    just my own opinion. GOD BLESS-ski-
  3. MamaDove

    MamaDove New Member

    Hi Joeb,

    I have been looking for you...was going to post about this in hopes you would see it...you must have read my mind...again

    If you don't remember our past posts, just look at my profile where we discussed the side effects of Levaquin, that should remind you...I, however, cannot forget when you posted to me while I was in the hospital suffering what the docs told me was Crohn's disease, when indeed was a severe reaction to Levaquin...

    I couldn't type all the problems I had (due to the tendon damage and brain damage apparently) nor dare I cause it upsets me so to remind me how I was 'damaged' by a drug and noone knows how to admit that a reaction occured and the damage done because noone caught it in time...

    And a caution to all...I just had the state of Maine licensing and regulatory board do an investigation of this on my behalf along with all the other errors they made and to my shock, they found my claim to be unsubstantiated due to the fact that none of the staff WROTE IT DOWN...One doc did write it in my chart 4 days later cause I screamed at him (that works sometimes)and the investigator 'missed it'.

    This reminds me to never trust thes people and be your own advocate...always!!!

    My list of symptoms is coincidentally similar to the thousands of 'floxed' people who post on other sites proving we are not alone...Oh joy...so much needless suffering...

    For the past year (12/2 was the anniversary of my 'floxing') since the red line went up my arm, my heart pounded so hard I thought I was finished right then only to endure the swelling of my legs and hands to the point it damaged the nerves and made my left leg 'dead' and eventually developed clots that hospitalized me once again. The burning pains, the tendons pulling, being unable to lift my arms or keep my legs under me...I feel like a torture victim but I am slowly working out of this nightmare to consider myself a survivor...

    What a fight to even have anyone ADMIT what happened and then to find someone who can treat me...

    My rheumy finally admitted he has seen this before and is 'pushing my PC's hand' and ordering a rehab specialist to handle me so I can hopefully gain some more function without tearing tendons in the process...Imagine doctors and therapists advising certain exercises and a 'no pain, no gain' approach to this when the risk of tendon rupture is still great even after a year? Incompetence and lack of education in this area...
    There is much info regarding this 'reaction' and I finially got it through to my PCP, the physiatrist that wanted to treat me with Lyrica and Neurontin and my rheumy who I believe knew all along but wanted to rule out everything else (that's usually how it is done once YOU figure out what has poisoned you)...Like FMS, CFS, we have to usually educate the doctors...

    Like I said, brain is damaged now so my writing has worsened and my hands are now FROZEN from typing...
    Forgive me for going on and on but like joeb, this experience has been a total nightmare...I have been through 'stuff' before but this takes the cake...

    Joeb, I know by your other posts that you have contacted people regarding this situation...I too searched for someone to even listen to me...I found someone recently...Have you tried Rights for Americans? Google them...Robert Weiss Law Firm, very knowledgable and caring to me...They have an office in Jericho, NY, where I am from, so that was a plus...

    Please let me know if you want more info on them and somehow I can get it to you...I just signed my papers and gave them the go-ahead to help me, and others eventually...I trust that they will serve in my best interest and we will uncover the truth and at least alert others to the possible life-altering changes this class of drugs can bring...Again, I cannot go into all the scary details of what happened to me but I recall vividly what I was told about the drug before they put it in my IV...I needed it to 'cure me' of my disease...'THIS WOULD HELP ME'
    It did help me...OBTAIN A HANDICAP PERMIT!!!

    While pam_d and others have benefitted from this drug, many of us are forever changed and 'damaged' (sorry, that's the only way to describe this), the word 'poisoned' does so nicely too...Only those who have gone through this and still live with this daily could possibly understand...I lay many of nights in the hospital begging to die because of the ill-effects of this drug...I was also given solumedrol at a high dose and together they create a 'perfect storm'...

    I will check back to this post soon to see if you need info from me...Hope you don't disappear again...I miss your posts...Hope to chat soon...

    Oh I almost forgot, the end of your post mentioned the electrolytes...My potassium went dangerously low and I developed hypokalemia, another known effect of this...Even being severely dehydrated when I was admitted, so much so, the IV's burned when being put in, my potassium levels were fine UNTIL the levaquin ran through the first time, the second time destroyed me, while my husband sat there watching me crumble in fear...AGain, noone can understand but the 'floxed' ones...We may someday have our own board, lord knows there are more than enough 'members' out there...

    There are other knowledgable posters on this board too (cbs1234 if my memory serves me), hope they come along and maybe we can join together to help others...

  4. Juloo

    Juloo Member

    Well, *I* believe you! One partially torn rotator cuff here. I would have to be on my deathbed to ever consider Levaquin again.
  5. Clay2

    Clay2 New Member

    After first reading your story before, I did a quick google search with levaquin and "tendon rupture". I didn't even have to read any of the 9000 hits to realize you weren't making this up.

    I just had a friend take levaquin's cousin Cipro for a urinary infection. I begged her not to. She's ok, but I wouldn't do it.

    I also frequent a forum for men's issues and urology. People there know about the quinolone antibiotic problems.

    Why are the docs always the last to learn?
  6. joeb7th

    joeb7th New Member

    ankles feel like they were broken, wrists too. contant pain in shoulders, arms hands hips, knees. intestinal tract constant problems.malabsorbtion real problem immune system weakened.
    nerve system is damaged.

    so weak 24 hrs a day. many other weird symptoms. pains weakness all together with nerve system distress and major depression is a living nightmare. career gone, debts massive. little social security stipend barely helps.

    can't go to local docs anymore for reasons i described. same thing with ER. other docs and hospitals too far away.
    psych ward calling used as threat to keep you away.

    and levaquin as trigger can not even be discussed with any doctor. they tell you flat out they will not even discuss this at all.

    just stay at home in suffering, still can't quite believe this whole science fiction horror movie like scenario. damaged and sick but can't do anything about it.

    legal field won't touch it because you haven't died or had your liver fail. in between living and dying does not get it in the legal world anymore. only death or comatose state gets attorneys to act on your behalf.
  7. gastitcher

    gastitcher New Member

    The Levaquin.com website has information on the side effects and talks about the tendon rupture. I am taking it now and my pain level is through the roof. I am contacting my doctor about this.
  8. MamaDove

    MamaDove New Member

    Please google 'rights for americans', will lead you to Hooper & Weiss in Jericho, NY...

    They have helped me when all others said they 'wouldn't'.

    My legs, arms, wrists and heart have been damaged, over a year...I have improved since last year but this is not acceptable...This damage is unbearably painful most of the time and my life has forever changed...My husband is now my full-time caretaker due to this drug...Those who are unwilling to discuss this are adding to the problem...

    Contact the above, ask for Brian...You may want to fill out the online correspondence to them stating what occured, but I still would speak directly to Brian, he has been the only one willing to 'hear' me...
  9. cbs1234

    cbs1234 New Member

    Me too!

    It's been 6.25 years since I was floxed with 28 days of levaquin. I was VERY athletic and a very energetic and doting father of two young kids.Nerve damage, vision damage, hearing damage, peripheral neuropathies, tachardia, insomnia, anxiety, depression, and tendon/joint damage. For a year and a half, I thought it would never end. Fortunately, over time, I began to heal. But, it took a LONG time for the healing to start and I went through numerous cycles of recovery and horrendous relapses. All of my nerve damage appears to be 98% better with only nuisance problems from time to time. My tendons continue to bother me but they are much better than in the past. I still can't run or jump, but I can ride a bike, lift light weights, play a little golf, and be more active than most in the general population. This activity does not come without pain, but I refuse to give up.

    hang in there fellow floxies. You too will likely see recovery over time, but you must be patient. Take heart in the little victories and every minor step in the recovery process
  10. msbsgblue

    msbsgblue Member

    What are these meds given for?

    What is their main use?
  11. cbs1234

    cbs1234 New Member

    These drugs are broad spectrum antibiotics given for any type of bacterial infection (unfortunately most antibiotics are prescribed without confirming a bacterial versus a viral infection). Docs prescribe these drugs for ear infections, sinus infections, UTI's, pneumonia, etc, etc.

    Unless you really, really need an antibiotic and no others work for you, avoid them at all costs.
  12. Moogie758

    Moogie758 New Member

    I am a recent Levaquin user, Oct. '07 for a bad sinus infection. I had also been in physical therapy for Achilles Tendonitis, right side all summer, which was improving. Within 2 days of taking Levaquin, my Achilles Tendonitis on the right was much more painful, and the left Achilles Tendon had it's first bad flare-up. I could barely walk across a room and getting up the stairs brought me to tears. My left shoulder and arm began to throb, sting, ache and become numb. I was quite concerned as I had successful open rotator cuff surgery on that side 2 years ago, that healed up 100%. My hips began to hurt when I laid on my side in bed, and my knees now were having pain.
    I felt like I was hit by a truck. I continued to get worse.
    I saw my orthopediest for my shoulder problem 2 weeks ago.
    Of course, he dismissed the Levaquin as causing any problems and ordered a MRI of my shoulder and a trip to the neurologist for nerve tests. It's the best thing he could have done for me.
    Upon giving the neurologist my many symptoms and explaining the Levaquin, which I told him he probably would not believe anyway, he knew right off that was my problem. Being a FMS sufferer, but not too badly, I am in a severe flare-up of fibromyalgia caused by the chemicals in the Levaquin, according to the neurologist. I could have kissed him for being the first one to agree that this is a terrible drug. His quote was he would have suffered the sinus infection, than to take Levaquin. He has me on Lyrica and gave me a steroid injection in my painful arm. I feel a bit better, but it has only been 5 days now. My walking is still very painful, which is the worst part of the entire thing. Mobility is so important. The sad part is that when I got my RX for Levaquin it did mention tendon ruptures, so I called my orthopediest about my tendonitis and he said that I should be OK, and just to take it easy while I'm on it. I'm to see him again next week, and might cancel due to his irregard of the potential problems with this drug. I can only hope that I start to feel better soon. I worry when I read other posts on the time involved to heal. I will NEVER take any drug in that class again. Please make your doctor listen to you when you have concerns, I know that is a big order. We should have the power, not the drug companies.
  13. pam_d

    pam_d New Member

    ...but I feel compelled to present another side. I have taken Levaquin on numerous occasions with no such problems.

    I am NOT saying everyone's concerns are not valid; the maker of Levaquin specifically lists tendon damage as a possibility, as well as a number of other side effects, so I'm not saying that it can't happen, nor am I minimizing the devastating effects you all describe.

    What I AM saying is that hundreds of thousands of people take this drug without having these problems.

    I agree with everyone that it should NOT be prescribed for minor ailments when another antibiotic would do the trick. And certainly if you've had a problem with it, you should NEVER take it again. Tetracycline is that way for me---I've had horrible side effects, and will NEVER take it again.

    I took Levaquin several times during my Leukemia treatment when I had effectively no immune system to fight infection, and a very STRONG antibiotic was warranted, and it saved my life, literally....it was not a situation where it was given for a "minor" ailment.

    Just presenting another side to this controversial drug---most every topic HAS another point of view---which I'm sure I'll be bashed for...

  14. cbs1234

    cbs1234 New Member

    I am very happy that it saved your life. However, this thread is about the problems that Levaquin causes, not the people that it helps.

    By the way, I know many, many folks like you that took levaquin or cipro or other fluoroquinolones many times with no problem. Then on the 3rd or 4th or even the 7th course, they became severely disabled. Like someone that has been stung by bees several times in their life, and then bam, the next sting causes an anaphylactic reaction and they almost die. The moral of the story for you or anyone else reading this post--don't take a fluoroquinolone unless your life literally depends on it and there are absolutely no other antibiotics that will save your life.

    Believe me and JoeB and others, it is not worth the risk. The suffering these drugs can cause is unbelievable.
  15. pam_d

    pam_d New Member

    ...bashed. Sorry I hijacked the thread to present another side; I temporarily forgot, it is all one-sided here. Forgive me.
  16. cbs1234

    cbs1234 New Member

    If you will notice, I was not bashing you. I actually tried to warn you about repeated doses of these drugs. I don't want you or anyone else to suffer the fate I and others have suffered from the FQ antibiotics.
  17. forfink

    forfink New Member

    I have a friend who also had a horrible reaction to Levaquin. It ended up rupturing her achilles tendon, she will be on crutches for the rest of her life and also be debilitated with FM from this so called miracle drug.

    This drug is not worth the risk. The naysayers may call us one sided, I think we are cautious and not willing to play Russian Roulette! This drug will eventually be recalled, just a matter of time.
  18. mrwilliams

    mrwilliams New Member

    Add me to list. Was on it for sinus infection. Somehow , just gettting up from the floor holding my granddaughter, I tore my meniscus in my knee. Had knee surgery the day after Christmas.

  19. sophiekk

    sophiekk New Member

    Never taken Levaquin, but I've taken Cipro repeatedly with no ill effects at all. Can't speak for others of course.
  20. findmind

    findmind New Member

    JUST TODAY I was rx'd Cipro.....something...for a UTI!

    What's the first thing I should watch out for?

    It's 500mg 2x daily.

    It is one of the ones you're talking about, right?

    Geez, that's all I need!