Did levaquin trigger my CFS?

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Apr 8, 2007.

  1. cherylsue

    cherylsue Member

    I always was suspect of Levaquin in the triggering of my CFS, but as I'm researching more, I now feel it triggered my remitting/relapsing CFS these past (almost) 7 years.

    It began with a horrible flulike illness, 103 degree fever, night sweats, malaise. After 6 days of this, my husband took me to the doctor, who put me in the hospital pronto. I had several tests and after a few days they thought I may have a bladder infection along with the virus. My sed rate was 103.

    I was administered Levaquin, and I thought I died, or didn't care if I did. It fried my brain. I also had burning pains up and down my arms and along my back. I was so weak, but my awful symptoms were in my brain. I felt like I was in shock. If I felt bad before, I felt doubly worse after the Levaquin. I was hoping it would help me, but there was no placebo effect there.

    It took me 14 months to recover to normal.

    I relapsed twice in 2004, once immediately after taking Cipro for a bladder infection.

    I relapsed again in 2006. No drugs this time. Just susceptibility.

    In PDR one of the risks of Levaquin is nerve damage, paresthesia, and encepholopathy. CFS has been renamed myalgic encepholapathy. I certainly had those symptoms.

    I've been checking a few posts, and a few of you had bad reactions to this drug as well. Did it affect my CNS and immune system? How does one treat drug reactions?

    Thanks for you input.

    [This Message was Edited on 04/08/2007]
    [This Message was Edited on 04/08/2007]

    LISALOO New Member

    I've seen a lot of people with CFS after this.

    I got CFS after a 3 month fight with Sinus infections. I took Levaquin. Since I don't have the co-infections or viruses, I think it may be from an infection and the antis.
  3. Clay2

    Clay2 New Member

    I took Cipro for a bladder/prostate thing about 3 months before my unending flu/CFS. I also have chronic pelvic pain syndrome (CPPS, trigger points), and many men with it suspect cipro and levaquin. All men with CPPS are assumed to have prostate problems by their urologistss and given cipro. Our prostates are not the problem, but urologists are no more useful or up to date than other docs.
  4. EddieJ

    EddieJ New Member

    I know someone who developed all kinds of neuromuscular weakness and pain after taking Levaquin. It certainly appears that it could have exacerbated your CFS. I would look into getting a good lawyer. There have been several lawsuits against the maker of Levaquin.
  5. cherylsue

    cherylsue Member

    Thank you all for your replies. I do think the Levaquin exacerbated my CFS. There certainly seems to be a link.

    I had the flu several years ago before CFS, and it lasted a few weeks. I felt totally miserable, but I recovered. I often wonder if my doctor hadn't put me in the hospital, if I too, would have recovered. Instead I developed this horrible illness with neurological symptoms, malaise, and fatigue.

    Have your symptoms improved over the years?

    Best to you,

    [This Message was Edited on 04/09/2007]
  6. kbak

    kbak Member

    Hi CherlSue!
    That's an intresting question! My story is almost the same as yours. I was hospitalized in 2000 with severe flu like symptoms, but I was losing my red blood cells, which is what put me in the hospital.

    It wasn't until I was in the hosp. that they gave me Levaquin. Later after I was diagnosed with CFS, and started researching, did I come upon the fact that Levaquin had such terible side effects. It certainly would explain why my brain is soooo fried.

    I don't think it gave me my CFS because I do have HHV-6 and CMV. This combination is called non HIV AIDS by some researchers, and is also found in many people that have MS.
    I do think it gave me problems with my brain and lots of trouble with my tendons.

    It certainly could give many people serious enough side effects to be diagnosed with CFS. It's such a complicated mess.

    Take care,
  7. deliarose

    deliarose New Member

    i got CFS after an infection + antibiotics. Erythromycin plus another...

    I assume the trigger infection was EBV.

    Different drug. Same pattern.

  8. joeb7th

    joeb7th New Member

    I'm 55 , male. Worked physical and social contact jobs my entire life. Married 25 years, two kids in college and working, never drank, did drugs, or seen a psychiatrist in my entire life.

    Never, EVER, went to hospitals and docs like I am now.

    Got a flu in Dec. 2005. Had it three days and bronchitis starting too. Extremely weak, and electrolytes out of balance as I wasn't smart enough to know to drink gator aid instead of tea and just water. Passed out while standing and going to bathroom and crushed my skull and nose and blood everywhere and knocked out. Raced to local ER after my wife and son called 9-11.

    There they diagnosed me with a slight concussion, broken septum, fever, flu, higher white blood cell count, beginning bronchitis and electrolyte imbalance-potassium.

    But my current destroyed state all happened "after" I was given Levaquin near the end of my 2 to 3 hour ER stay that night ( this antibiotic was often called " The Big Gun" by nurses and docs when this first came out because it was so powerful it was only supposed to be used in cases where normal potency antibiotics weren't working well. )


    ONLY AFTER TAKING LEVAQUIN AND NO OTHER MEDICINE FOR ONE WEEK DID ALL THIS START! And it started within 24 hours of my first 4 capsules.

    It was only after they started giving me Levaquin at the hospital and sent me home within 24 hours of my initial visit to their ER from head knock out fall and flu that I felt all this.

    My first night home my arms felt like they were being ripped out of their sockets and the pain was hot and shot down into my arms and hands. Then my hands would get ice cold then numb. At first I thought I was sleeping on my arms wrong. So I would toss to other side. This made no difference.

    I was trembling, freezing then hot. My nerve system felt like it was being electrically shocked!

    My brain would get these "zaps", little jolting feelings and seemed full of almost indescribable anxiety and almost paranoia and I couldn't sleep, and would have these few second nightmares! But all together this was a nightmare come to life!

    I would get these shooting pains in my rib cage and chest area near my heart. My insides felt completely haywire and my intestinal tract went nuts. Rumbling, grumbling, shooting pains, gas.

    Next morning I was fainting again and called 9-11 and had an ambulance race me back to ER again. This was 15 months ago. I was in so much torturous pain in my stomach and all over I would go into shock eating for months. Lost 40 lbs in 3 months. So weak my legs would shake and I could barely walk!

    Developed bardy cardia, hospitalized for one week once 3 months later in March after fainting in hospital waiting for stomach X-rays.

    I have been racing to hospitals and ERs and doctors ever since ( 15 or 16 times ) telling them I feel like I am dying. My brain also feels damaged and my nerve system definitely. I also have this fibro pain in every body limb. Intestinal tract still feels destroyed, sore and constantly exhausted. I am certain the Levaquin ravaged my intestinal tract and it's never come back!

    Test at first showed beginning Chrohns but later the GI docs said it was just lots of inflammation and duodenal ulcers and gastritis and acid reflux, GERD, maybe hiatial hernia,mild diverticulosis, yeast present, but not Crohns. Told me to take anti-depressants as I was exhibiting too much anxiety over all this!

    So many days in this last 15 month long torture, I have to hold back the crying. I feel destroyed. Lost everything, job, career, social life, finances in ruins $60,000 in debt, wife and kids exhausted and depressed to max after hearing me moan every day and no fatherly or spousal support from me in any way now.

    Now I am having withdrawal symptoms from Lorazepam which I am not managing well. Right at this moment I feel as bad as I ever have. The Lorazepam does this to you if you don't take it every day. I just took a half dose...so far no relief.

    Forget about getting a lawyer for the Levaquin damage. I have called 100 law firms around the country. Only one even wanted a description-of-problems form back.

    EVERYONE OF THESE FIRMS say that because Bush administration got malpractice suit limits down to no more than $250,000 and it is so tough to win against the super rich and super powerful drug companies like Ortho-McNiel in this case, that unless you die or your liver has failed, they won't take you on.

    I called Ortho-McNeil and told them what I thought their antibiotic Levaquin did to me and the lady on the product complaint line asked me to describe the what and how all this started.

    She acknowledge reports of tendon damage with Levaquin ( I have also been diganosed with tendonitis and have torn rotator cuff in right shoulder and ankles and knees and hips feel so sore and weak like 90 year old cripple.

    She then said...and I QUOTE " They ( the ER ) should have never given you Levaquin when your electrolytes were out of balance"


    WHAT AN ASTONISHING ADMMISSION! Don't the hospitals and ER docs around the country know this? Mine sure didn't.

    My potassium levels were so out of whack that first night and measured so when they gave me my first two capsules. This is why I fainted in the first place! And I fainted AGAIN 4 to 5 minutes into the ride home after this ER told me to go home 20 minutes after they gave me this Levaquin! My frantic wife raced me back to the ER where they put me in a recovery room untill next day. The ER doc said I had a "vagal" response to explain my fainting right after they discharged me.

    Oviously this ER didn't have a clue.

    I went back to them 2 to 3 times that first week telling them my symptoms and that I felt like I was dying. Well beyond anything I had been feeling with the flu.

    They would always asked what I was taking and I would tell them "one drug...the levaquin you prescribed me." They never once said maybe I should stop taking this and I sure didn't know anything about Levaquin.

    I was given this in the hospital in capsule form without warning pamphlets and I was given a bottle with another 5 day dose when I left. But I was so traumatized with smashed face, blocked breathing, swallowing blood and bronchial fluid every few seconds, I was not in any shape to be opening up fine print, ten thousand word information pamphlets and studying this that first week. I was too busy dying and racing to ER's !

    But their blood, urine and ekg tests would come out normal so they would load me up with ativan and let me sit by myself for a few hours and then send me home to another day of death symptoms when I would race back again.

    Eventually they just started calling the psyche ward...and to this day, all any of the ER docs will do now is ask me why I am there and then recommend or actually call the psyche ward people to talk to me after they sedate me with Ativan.

    This has been my experience with Levaquin.
    [This Message was Edited on 04/09/2007]
  9. cherylsue

    cherylsue Member

    This is too much. This needs to be brought to Dateline NBC or any other news station that will listen.

    I hear you loud and clear. Although my levaquin experience was limited to an IV and then a few weeks later in pill form for an UTI, I felt far worse after taking it. It did devastating things to me, and somehow, we need to get a class action lawsuit. I wonder how many people out there are affected? There's power in numbers.

    Angry as hell.

  10. karinaxx

    karinaxx New Member

    i pumbed my post from a few month ago about CFIDS/ME/MS/FM+ adverse reactions+autoimmune D. and ABX for you.
    maybe you will find it interesting....
    take care
    [This Message was Edited on 04/09/2007]
  11. roge

    roge Member

    my condition (FM) got much worse after tequin (now off the market). will never know if was this or a virus. assuming the latter as easier to accept than the former. Have had FM since I was 19 (now 36) and have CFS now since fall of 2004 as I am assuming it is viral based.

  12. cbs1234

    cbs1234 New Member

    One very bad news drug. A little research will show you thousands upon thousands of scary and sad stories about levaquin and the other fluoroquinolones like cipro, tequin, floxin, avelox, etc.
  13. bunnyfluff

    bunnyfluff Member

    hurry. In my state (TX) there is a 3 yr limit of time to file on a medical claim.
  14. cherylsue

    cherylsue Member

    Well, it's been almost 7 years, and I don't know if I want to spend my life in litigation. However, I do think this drug needs to be exposed for what it is so that others do not have to go through this. I just don't know how to do this unless there is a group that already exists. I would just join its ranks.

  15. skikat

    skikat New Member

    hi all. you have in the last 2 nights verified just exactly what i have been telling my family for 2 years.i dont know about the long term damage as i am on so many high powered pain meds including morphine that i couldnt tell you if i cut my arm off1 lol but this i do know. everytime i take an antibiotic (i have really bad sinus infections that go into the lining of my brain and infect it too) every time-- i go into a flare by the 2nd day with pain that i cannot describe and have to stop taking the antibiotic. and they all do it to me. it started with levaquin. then they changed the script to biaxin. same thing. then cefelexin, keflex, ceflex, just to mention a few. but they all do the same thing. i really dont know what to do as i also have the fibro, myositis,tendonitis, osteoarthritis, etc. but whatever we have . they are killing us with this stuff. i have had so many sinus infections that it has eaten a hole in my septum and that is how the infection gets into the lining of my brain. the headaches from that are unbearable. and my forehead and back of my head are so sore to the touch that it is miserable. i dont want to whine but i think we are going to have to use something natural. i can tell you that the amish people sell a product called SilverMIRACLE . they dont ruin thier soil but let it lay and build up its richness. that is where the silver comes in. it is supposed to be in our soil naturally but we have poisioned it and sowed it to death without any rest. they dont do that. i asked my druggist about it and he ran a research on it as he had never heard of it but this is how i found all of this out. SILVER is a natural AANTIBIOTIC! he told me it made complete sense after he read about it. wanted to put it in his small pharmacy but the amish dont let things like that go. it also says on the bottle that it not only kills bacterial infections but will kill VIRUSES! not even the doctors can do that. well i tell you , i went and bought 4 bottles of it. 25.00 dollars a bottle. about 6 oz. but--- you only have to take 1/4 teaspoon in a drink of your preference 3 x a day! it will last forever. it is as clear as water and has no taste to it. i am going to start it in 2 days so i will try to let you know on the post how it works.ok? hope this helps someone. oh and it doesnt have to be refrigerated. also doesnt go bad.maybe thats why they call it a miracle.lol i live close to the amish and they carry all of the herbals and things like valerian in bottles to help nerves and sleep. just everything. and they have been such a source of information. mennonite stores carry some of these things but not as much i dont think. if you dont live close to go to thier stores. they will mail it. gotta go for now. hugs to all you good folks and hope i didnt ramble.lol. nite....ski
  16. desertlass

    desertlass New Member

    This has given me a LOT to think about. I took so much cipro in the year before I developed CFS.

    I always knew that there were many factors that all conspired together to cause the CFS/FM, both from birth, early childhood exposures to pesticides, having EBV in college 1989, and due to an injury in my back in 2000.

    But it was in 1999, the year before the injury that I took many, many courses of ABX and I know I had cipro several times,and a different one that I can't recall.

    My doctor gave me samples of something she thought would be more powerful and I only took a few because I thought I had been "brained" and knocked out. I will have to find out what it was she gave me in conjunction with the cipro.

    My guess is that my EBV might have reared up, and because my main complaint was incredible fatigue, headaches, weakness along with a slight runny nose, she just kept insisting I had a low-level sinus infection. You would think that a doctor would at least run a simple blood test before prescribing the final "bomb".

    I don't think the CFS could have been avoided, because of the other factors. But I have sometimes thought the injury was caused by the ABX, or at least set me up for it.

    I know at least that the injury is what caused the FM and then CFS to flare up so severely anyway, even if they were already present.

    Perhaps that injury is what could have been avoided. :(

    But for me, it is all still just speculation. I don't have such a clear cut picture. It is tempting for me to blame everything on one thing, but I still am trying to connect all these dots...

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