Levaquin Reaction? 6 Months Of Suffering.

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Jun 6, 2006.

  1. joeb7th

    joeb7th New Member

    I am new to this board.

    It appears that my maladies may be connected to those that are being mentioned here on this board.

    And I certainly need to have someone else to share this with.

    December 7th, 2005 I got the West Coast flu. I worked in Doris Day's little hotel In Carmel, Ca. as a bellman, concierge and I loved my job. Was there for 4 years. It was both a physical and social job.

    People all over the West Coast were getting this flu. I probably picked it up from one of the guests.

    I went into the typical weak, 102 fever, bone ache syndrome.
    Went to a family care place and they said it was the flu. Stay home, rest, lots of water. Did this and a little bronchitis had started by the thrid day. Again, this was the course most people were reporting.

    That third night I got up to go the bathroom and standing there I fainted and fell on my face and knocked myself out with lots of bleeding from my nose. Wife called an ambulance and they took me to our local ER. Kept me three hours. Visually checked bleeding nose ( was swallowing and coughing up blood with every cough from the bronchitis. )I was in bad shape. Felt like I had been in a car accident while in the middle of the flu. But after 3 hours they said I could go home. GO HOME? I sure didn't feel well enough to go home...but they said the hospital was full of more serious patients. So they gave me two "levaquin" tablets and wheeled me out.

    3 to 4 minutes into the ride home I fainted next to my wife in the car. She frantically raced me back to this ER. They said it was a "vagal" response. They put a general IV on me and put me in a "recovery" room until the next afternoon when they sent me home again.

    I was given another dose of Leviquin around noon I believe. Again in tablet form. That night I felt horrible but assumed it was all the trauma. The next morning my body "exploded" with entire body symptoms that are almost indescribable. I was so weak and sore in my intestinal tract...I felt like I was going to die. I felt like I was going into shock. My daughter called another ambulance that first morning home and I raced back to ER.

    They gave me lorazapam? And did their basic tests but could find nothing. Their reports aleways said " anxiety, with stomach pain" I'm telling you I went there because I felt like I was going to die. Like I was being poisoned. I didn't just go their because I was anxious and felt pain only in my stomach. But you can't believe how many doctors will look at my records and immediately write me off as a mental case. To this day this is one of the worst parst of what has happened to me. And my history does not suggest this and I have never been a drinker or smoker. I couldn't have donw that very social job of mine for four years if I was close to being that bad.

    I went back to that ER 4, 5 and maybe 6 more times! I was having attacks of pain and weakness that were so frightening and powerful I would just end up shaking and almost crying. Each time I went back to this ER they would do the same thing and send me home. Finally they just called in the psych ward people. Out of embarrassment I would just fight through these attacks and I started taking Valium to get through these.

    Also, never once did these ER doctors ever say that maybe I was having a reaction to this Levaquin. It was the only medicine I was taking when all of this started. I don't even like taking medicine. I hadn't taken any medicine for years prior to this Levaquin. And I just didn't mention it ewither just trusting the doctors to ask the right questions.

    But after 6 months of torture with the same problems and tons of others like incredible insomnia, wincing pains all over, stomach looks like it may be beginning crohns disease, digestive problems, pain in arms even hands, legs, buttocks, feet, ankles...a soreness that at night is usually worst and first thing in the morning. You just toss and turn to try and get through it. Incredible weakness. I walk like a 90 year old man. Thats how weak my legs are. And tiredness, continuous tiredness.
    I was open minded and went to a psychiatrist for the first time in my 54 years and I am taking Lexipro 20 mgs a day becuase all the doctors recommended this but this doesn't touch my physical problems, never has. One thing the Lexipro does though is take away your sex drive. Like I mean, this is gone. But I tried to break off of this a few weeeks ago and maybe now I am dependant on it because within two weeks of stopping the Lexipro all I wanted to do was cry I was so depressed. And my doctors have finished with me. I live in a relatively small town area and since all the tests have come back negative..everything from MRI's to CT scans to neurologist electrical stimualtion tests to heart tests ( bradycardia though, often in 40s resting ) they say they can't find anything. And when I mentioned that all of this started within one day of taking Levaquin they get upset and dismiss this as a cause and won't give it one seconds thought.

    Gues that's everything...but only you guys and gals here know how depressed and discouraged and actually frightened I am at this point. I have lost my job. Been cut off of any more disability. Financially in the hole for thousands in medical deductibles. Kids in college and they probably have to drop out now. What a nightmare.

    Other symptoms, weird and incredible sensitivity to cold. Can't get warm and shake. Tremors, and shuttering. Bladder just floods out during worst attacks. Scalp and forearms itch with little pimples forming on scalp that hurt. This comes and goes. Horrible smelling gas ( sorry to mention this but feel I should mention all of symptoms )Unsteady gait, eye sight definitely worse than before illness. Appetite just there but was completely gone for three months. Lost 20 lbs. Went from 208 to 185. Back up to 200 now by forcing myself to eat. Still shake. This is really bad when preceded by stomach growling , rumbling and discomfort and then body weakness and soreness.

    Irritable, overly sensitive to loud noises and being around people outside of my home. Can you believe I was a popular fellow employee and concierge who loved interacting with and helping his guests before all this? LMK, especially if anybody has any remedies for the body pains and weaknesses. Seem to be in the muscles.
  2. Txslady

    Txslady New Member

    I wish they would put BIG BOLD WARNINGS on Levaquin. I hate that drug. I have tried to take it twice and I literaly go crazy and the pain is like nothing you have ever had. If Levaquin was the only drug left in the world and I was dying I would not take it. Google levaquin and you will find all kinds of message boards about that drug.


    ANNXYZ New Member

    Just to be sure you might want to get an Igenex lyme test . My symptoms early on were also bizarre and kept me going to the ER . I also felt poisoned .

    Are you sure the levaquin did all of this ? It is certainly a nightmare , and no one goes crazy and becomes a psych case overnight . you honestly have to write off those comments as revelation of their ignorance . It sounds like your docs are not even really listening or applying their thinking skills .

    You might also want to read up on a newly discovered virus that supposedly disables the immune system from functioning normally . It is called cryptovirus .

    Keep looking for a doctor who will listen and try to
    work to find solutions .
  4. victoria

    victoria New Member

    what a horror story you have been through, I am so sorryy to hear it!

    My son has chronic/active Lyme, hasn't shown much improvement and trying also some protocols for suspected co-infections - it is notoriously difficult to get positives on many of these infections. My son was very social, but not now.

    He is about to start a protocol for suspected bartonella as his cognitive symptoms in particular haven't shown any improvement... Levaquin is one of the 2 abx...

    which makes me wonder if you might have Lyme +/or Bartonella etc and had a huge herxheimer reaction (makes everything worse due to die-off of bacteria) -

    -altho why it would continue after stopping it does not match up to what I've read about herxes or experienced ourselves.

    I'd guess if it were me, I'd find a very good LLMD thru ilads.org, lyme flash net also has a doctor referral section...

    and keep trying until you find someone who knows what he's doing. Persistence and research is everything... I know money is an issue, hopefully you can get SSD, if you haven't already.

    Hopefully you'll get some more responses...
    all the best,

  5. joeb7th

    joeb7th New Member

    Also, please excuse my spelling in that first post.
    I just wanted to get everything out in a short period of time.
  6. graydon

    graydon New Member

    Hi Joe,

    Really sorry to hear your story because I'm in the same boat right beside you and know just how devastating this can be. And it all started with Levaquin, just like you...

    Last year I was having reoccurring diverticulitis, which I later found out that it kept coming back because part of my intestines had ruptured and then sealed off, leaving a large infected pouch that would diminish with a treatment of antibiotics, only to rear it's head again once the antibiotics were stopped.

    In a period of just 6 months I had 4 diverticulitis attacks, and each time I would go to the ER and get a round of painkillers along with Levaquin and Flagyl.

    My last attack was in early January of this year, and again I took the Levaquin. I was working at my computer when I noticed that all of my limbs felt like they were heavy. I could barely lift my arms. I got up to go to the bathroom and it felt like I was walking in water. I started to break out in a rash across my nose and cheeks later that evening and had sores inside my mouth and nose. I skipped my evening dose of Levaquin knowing that I was having a reaction of some sort (I'm allergic to so many medications), and went to bed with plans to call the doctor in the morning and report the reaction.

    That morning the pain was incredible! I had horrible pain in what felt like every joint in my body. And on top of that, I was covered in hives and had severe anxiety that had me grinding my teeth as my heart raced. I called the doctor to report everything and he told me to take Benadryl and stop taking the Levaquin. Four days passed quickly as I slept through most of the hours, and when the hives finally disappeared I awoke to the horrible pain along with the rash across my nose and the sores in my mouth and nose.

    I have never had a reaction like this to any medication, and I've been allergic to many. The pain was what really stood out. So I started doing some research after about a month of this pain that wouldn't go away, and I noted that I had a lot of symptoms associated with lupus. So I did some research on lupus and Levaquin and found a lot of people developed lupus after taking the antibiotic.

    I finally decided to visit my doctor for help with the pain and because I only have one kidney and was concerned about lupus. To make a long story short, he wrote me a pain medication prescription for methadone, which worked, and then later changed it to Ultram. He also ran some blood test, particularly ANA, which I believe is a screening test used for lupus.

    He told me it was negative, but in May I finally decided to go to a rheumotologist because the pain was still horrible (perhaps even worse), and he looked at the same exact test my doctor had said showed no evidence of me being sick and he told me my ANA level was high, which could mean lupus.

    In short, I've had problems with my one kidney lately, and the pain is just getting worse. The rheumotologist is thinking I could have lupus or rheumatoid arthritis along with fibromyalgia. But he's holding off on a formal diagnosis because he wants a few more months to pass to see if by chance the Levaquin is causing this and hopefully it will go away.

    I'm now on narcotic pain medication for pain. I take Norco and Mobic, and some days they don't touch the pain while other days allow me to get up and work to support my family.

    I've tried about everything for pain, and I've found -- at least in my case -- that ibuprofen doesn't work as well as Tylenol. But neither do much for the pain. Hot baths do help though. But the best relief I've gotten is from narcotic pain medication.

    I guess this horrible thing happened to us about the same time, and I don't seem to be getting any better. I'm 34 years old and have 2 young boys and a wife, and this is destroying my business and life. I just hope that one day it will go away.

    [This Message was Edited on 06/07/2006]
  7. joeb7th

    joeb7th New Member

    I wake uo every morning and it takes so much effort to get up. With the limb sorness and weakness and stomach tiredness. Your body just doesn't want to move. Then every morning I get up my body "shudders" from the cold and my legs and ankles have to get moving over their weakness and soreness and stiffness.

    I shake for a couple of hours and "usually" my body starts to feeel less of these symptoms. Then middle of day things are better, I can usually do some errands ( worst days nothing, best days mow the lawn ). Am searching for attorneys to see if anyone can help me here...even though my few doctors just dismiss this Levaquin cause that I believe has done all this.

    Something I discovered is this fact. Most doctors know very little about Levaquin/Cipro damage and how prevalent it is and what it does. They simply haven't read up on this subject. Most people who research this because they've been damaged know more about this specific adverse reaction than they do. Yes, they have the scientific background..but in regards to this specific drug and it's effect they really don't. And they dismiss it I believe because their egos can't allow them to accept that you may actually know more about this drug than they do.
  8. pam_d

    pam_d New Member

    I do hope this gets better with time.

    I take Levaquin with no problems....but I know there are reports of strong reactions to this drug.

    As an FMer who was recently diagnosed with Leukemia, I thank God Levaquin has been there for me in situations where my white count has been critically low (on Chemo) and infection set in. I've also had to use stronger antibiotics than Levaquin intravenously. Thankfully, no reactions. My former aversion to antibiotics and things not "natural" has had to go out the window---with this kind of cancer, I'm grateful for anything that keeps me alive, and thankful I haven't encountered what you have, i.e. strong reactions to medications.

    I can only hope things get better for you. Have you found a good Fibromyalgia doc in your vicinity who could evaluate you and rule that in or out?

    Good luck to you---I'll send a prayer your way that you find some relief from this pain and weakness!

    ((Gentle Hugs))
  9. joeb7th

    joeb7th New Member

    Pam and Greydon and others,

    Thank you for responding so sympathetically.

    And here you are in worse situations than me!

    The selflessness and thoughtfulness and caring and courage of people on these boards is just unbelievable.

    I have gotten more "therapy" and sincere sharing and caring on message baords than I ever would in my small communityin person. More helpful than the psychotherapist I am seeing ...and definitely more sincerly caring.

    Thanks again..JB
  10. cbs1234

    cbs1234 New Member

    All my problems started after a course of levaquin in 2001. Many of my problems have resolved over the years including tinnitus, tingling, numbness, night sweats, vision problems, insomnia, low libido, brain fog, fatigue, anxiety, depression, etc. However, I am still left with recurring and relapsing tendon problems that can be pretty debilitating. It generally gets better over time so hang in there.

    Don't listen to the folks that talk about lyme. You don't have lyme. You had a severe reaction to Levaquin, not a "herx" reaction. Read the manufacturers insert and the physicians desk reference which will show you that all the issues you are dealing with can definitely be caused by the drug. There are tens of thousands, probably hundreds of thousands of folks in similar positions. Do a google search and you will find lots of info on levaquin and tendon/nerve damage including some support groups with thousands of participants. Also, do a search of PubMed and you will find thousands of medical articles that deal with adverse reactions to levaquin and other fluoroquinolone antibiotics.

    I am well researched on these reactions including dealings with the foremost researcher in the world on these reactions. Ask if you want more info.
    [This Message was Edited on 06/07/2006]
  11. joeb7th

    joeb7th New Member

    Greydon, I tried to mail you this letter, but for some reason I am blocked from mailing anything to Yahoo. Somehow, somewhere I got blocked from being able to do this.

    Hello Greydon.

    Thanks for the post response.

    You are suffering more than I. Man, I feel for you. I don't know how you are able to work..

    I am not working right now. I'm 54 and there aren't alot of job opportunities for guys my age with health problems and no education ( high school graduate only )

    Yes, my body is going through so many unprecedented symptoms that I can't even keep up with them. Like this morning. Iwake up with little sleep because this anti-depressant I have been told to take ( Lexipro) causes insomnia. So I am tired from only sleeping 2 to 3 hours, my body aches all over ( limbs and stomach ) and I have just an entire body weakness and lethargy. And my llegs and ankles hurt and are so weak and stiff I just shuffle around for hours hoping that these will unwind as the day goes on. Sometimes they do, sometimes they don't. Plus I am so sensitive to cold. I mean, it isn't even cold and I am cold. Shaking with cold.

    It's been 6 months for me. I have found that because the doctors I have seen can't find any test results for all my symptoms they just suggest a psychological cause. This seems to agree with their egos more than saying..."I'm sorry, I can't find anything but you do have something physically wrong with you. " The shunting off to a psychiatrist has only helped with the anxiety and depression that has accompanied this physical trauma. It has done nothing for physical symptoms. But it is humiliating to have doctors do this when they can't find your physical problem.

    And they don't do it nicely. In my case, they act irritated because I mention that I am not certain this is all psychological. And they really got upset with my suggestion that maybe this was from the Levaquin and because I said all my never before experienced symptoms all started within 24 to 48 hours of taking this drug. Both my PC and Rheumatologist have told me they don't want to see me for another 2 months! That's there's nothing else they can do for me.
    Talk about feeling anxious. Where do I go from here? This is not a large population area. Not many other doctors to go to.

    And I am having to spend so much time and energy and dig out from my depression to contact other doctors, make and keep appointments, take tests, defend yourself against doctors who say you just need mental help, go into debt, find and research websites. You put in so much of this that if it were college you would earn a degree with the amount of work you are putting in...and under much more challenging circumstances than a student normally feels. You have to motivate yourself every day by yourself. No social sharing No credit.

    I haven't taken any specific pain medication as of yet. I am not supposed to mix many things with these anti-anxiety and anti-depression meds although I was taking another antibitoic for my intestinal beginning Crohns disease along with something called "Entocort." A steroid I believe, but recently just stopped taking these as I was so nauseated and sick in the stomach while doing so. My stomach is so messed up. I go in June 12th for a biopsy at the University of San Francisco Med Center. They want to see if it is truly Crohns or just a lot of inflammation from before. I think this Levaquin set everthing in my body back. What a life.

    Thanks for your message. take care, Joe B.
  12. joeb7th

    joeb7th New Member

    CBS, thanks for the reply.

    I needed to read a post like yours. Maybe it is possible for these symptoms to resolve over a few years. That would be such a hopeful blessing.

    But you still have the tendon problem? Wow, that's not good news.

    CBS...could you e-mail me at [email address removed as per rules] so that I may be able to get some specific information regarding this?

    I would appreciate it. Thanks, Joe B.
  13. joeb7th

    joeb7th New Member

    permanent adverse reactions 02/13/06 10:43 AM

    Yes some adverse reactions might take years to show up. But, many occur within 1 or 2 doses of a drug. And others can be attributed to herxing or simply part of the viral or bacterial infection being treated. Sulfa based drugs and the fluoroquinolone antibiotics are especially nasty, but with the sulfa based drugs the reaction is generally intense enough that you know to stop the drug.

    With the fluoroquinolones like cipro, levaquin, floxin, avelox, etc., the reactions can start slowly and you don't recognize the problem before its too late and permanent damage is done. The peripheral neuropathies might start as a little tingling and numbness and before you think of stopping the drug, you are left with permanent tingling, numbness, buzzing and/or burning sensations. The diffuse joint and tendon pain can start slowly and mimic overtraining injuries or simply the aches and pains of the flu. Before you know it, you are left with permanent tendon and joint damage.

    Be careful.
  14. joeb7th

    joeb7th New Member

    I was in just incredible pain at night in bed in my shoulders ( especially my right shoulder ) and arms and even hands and back of neck where I had some previous although never hurting too bad disk degeneration.This started in the first days of taking Levaquin.

    The pain was burning and I would turn over back and forth to see if I could relieve it a little on one side or the other again as my right side seemed definitely worse.

    I took me months to get a PC as the one I had was leaving his family practice group to be a Doctors On Duty doc and never once saw me and when I would call in the worst times of pain he would just say go to the ER. He never "once" saw me. I had to give him up. His treatment of me was a crime now that I look back.

    I was making appointments with specialists on my own and it would take two weeks each to get in and see these guys. I finally got a PC and finally got some MRI's done on my shoulder and neck. They found a "torn rotator cuff" in my right shoulder! I never knew I had one of these before all this pain and I certainly wasn't doing anything physical except taossing and turning in bed with extreme pain in this shoulder. Could this "rotator cuff tear" have been caused by the levaquin? Is this a tendon?
  15. cbs1234

    cbs1234 New Member

    get back to you later. At work now.
  16. graydon

    graydon New Member

    Joe ....

    I also have shoulder pain, and I've noticed it really gets severe in the afternoon if we're having a t-storm. Most of my pain seems to be focused on my left side. I'm thinking an MRI of my shoulder, wrist, and elbow might be beneficial hearing your story.

    And this cold ... I hear you on that one. It's been really hot hear lately, but when it was in the 70's and even 80's, I would get horribly cold and would shake and literally layer about 4 levels of clothing on, but the cold seemed to come from within and nothing would help. My family would be comfortable as I was shivering in a coat, sweater, and undershirt.

    I'm also not sleeping well since the incident. Last night I barely slept -- other days I don't want to wake-up. It feels like anxiety is the cause.

    One word on Lexipro -- I've taken it in the past and it can be really hard to come off of because of withdrawals. Just thought I would mention that in case you want to do additional research on it.

    I actually ended the relationship with my PCP because he didn't believe I was in pain because he said my test results were normal, which was only a blood test. He said I was out to get my hands on pain medication and was creating a fake illness. Of course, he didn't read my test results correctly as the rheumotoligist later said that the ANA was elevated and my creatine was high after looking at the test my PCP ordered. And my PCP never order any x-rays or other scans.

    Yes, so much work to do to try and help ourselves because nobody else will do it. It's like another full-time job keeping up with chiropractic appts and other doctors.

    CBS ... how long until the pain and other symptoms finally started to go away? I'm hopeful in reading your messages that this will pass in time.

  17. TXFMmom

    TXFMmom New Member

    I was a Certified Registered Nurse Anesthetist until I became disabled with this DD.

    I took Levaquin, after having a sinus infection which had survived treatment with several other things.


    I experienced my first one just an hour after the first dose, and I was shaking, weak-kneed, sweating, clammy and just managed to get to the fridge and grab some orange juice and some cheese. It took half an hour for it to subside. I did not relate it to the Levaquin.

    This continued, and I learned I had to eat about every three hours, with a protein in the meal, or I would end up in trouble. I just thought it was a side effect of being ill.



    The problem is the reason for this person's reaction, I believe. Having been sick, and probably dehydrated, and having been not eating, especially protein, during the event, set him up for A SEVERE HYPOGLYCEMIC ATTACK WHEN HE TOOK THE LEVAQUIN. THE FOOLS IN THE ER JUST DIDN'T PROPERLY DIAGNOSE IT.

    I know it was hypoglycemia, because I CHECKED IT, ONCE, when it happened to me with a glucose tester I have.

    My blood sugar usually runs around 95 to 100 and it was 55, which is not good.


    I really think this is the basis for what you guys have been reporting.
  18. joeb7th

    joeb7th New Member

    I have been in constant pain all day in my legs. Some parts numb, tingling. Rest of body so weak, shaky.

    Also, I know about coming off of Lexipro. Since it wasn't helping my physical symptoms I just stopped taking it after my first 4 or 5 weeks of 10 mgs. daily.

    I ended up being so on edge and irritable and ready to burst out in tears constantly with "major" depression I had to get back on it. Even double up!

    I have not had a sex drive since so long ago and the Lexipro just shuts this down completely. I noticed it coming back after stopping it for a week or so but the trade off...OMG. Crying plus sex drive...or no sex drive and not crying.

    Looking for someone to start taking a look at suing. But legal firms here in California just won't touch this unless I have documented liver damage or documented tendon damage. And even then they ask, "who are you going to sue?"

    I mentioned the manufacturer of course and also the emergency room for giving me this without any warnings and especially for seeing me 2 to 3 times in the first week I went to them with classic, documented severe reactions to this drug and never suggesting that I should stop taking it. Each visit they would ask what I was taking and I would tell them "Levaquin." I sure didn't know about any correlation between what I was experiencing for the first time in my life and the Levaquin, but I believe they should have been knowledgable of this correlation.

    I took Levaquin for another 4 days after my visit to them with these symptoms not including the fainting episode the first visit with them.
  19. cbs1234

    cbs1234 New Member

    The worst symptoms for me persisted for almost a year and then things started to get better. My tendons still cycle through bad relapses and periods of recovery. However, I know many folks that have recovered fully from all of their symptoms, but it can take up to two years. You need to be patient.

    The low libido, anxiety, insomnia, etc are all symptoms of a levaquin ADR.

    Ask more if you are interested. I've been at this for 5 years.
  20. cbs1234

    cbs1234 New Member

    not sure how to email you or contact you directly as the rules do not allow posting such info.

    You might try doing a search on yahoo groups for quinolone related forums to find others dealing with similar issues.