Discussion in 'Fibromyalgia Main Forum' started by m1she11e, Oct 31, 2009.

  1. m1she11e

    m1she11e New Member

    About 2 months ago I got a sinus infection. I went through many, many antibiotics. Finally the doc gave me Levaquin. I read all the bad info but I had been through every natural anti viral and anti fungal and the prescription ones too and I couldnt take it anymore. I finally just took the Levaquin. It was working wonderfully on the sinus infection and then it hit me. The night of my 3rd pill I woke up with cramps in the backs of my legs. The next day my Achilles started to hurt. Of course I switched antibiotics right away.

    It has been over 2 weeks and I still am hobbling around. I am reading and trying everything I can to heal. I still have a sinus infection and now can hardly walk. My right ankle is the worst.

    Has anyone else who has suffered from the side effects of Levaquin found a way to speed healing or reverse the damage done? I dont believe I have torn any tendons as there has been no swelling. They just hurt very bad and I fear if I put full weight on them they will tear.

    Any suggestions? Not "told you so's" please...

  2. victoria

    victoria New Member

    have you tried any detox methods -- even taking hot epsom salt baths may help, possibly, to get it out of your system and may even help the tendons, muscles, whatever because of the sulfur in it. I don't know if taking MSM (sulfur) might help, it might be something to research.

    My son took it for a month for lyme & bartonella and did well... until after his week 'off' and he resumed it. He said after 2 days it felt like all the muscles, tendons, etc were spasming altho nothing was obvious to the eye. It only took a few days for it to pass, however, after stopping the Levaquin.

    good luck, so sorry you've had to go thru this; I hope you find something that helps...

    all the best,
    [This Message was Edited on 10/31/2009]
  3. street129

    street129 New Member

    i heard this drug is bad

    here is a video. please watch about someone who has bad bad experience taking LEVAQUIN, and have symtoms like the original poster


    at one time about 1 month ago dr. put me on cipro. that is another bad antibiotic, and the first pill that i took had me so sick, that i flush the rest down the tiolet bowl. horrible, just horrible
    click on video[This Message was Edited on 10/31/2009]
  4. Chelz

    Chelz New Member

    Hello Michelle, I took Levaquin about 7 years ago.............and never again. My doctor gave me this drug when I had bronchitis and I warned him that I was super sensitive to most medications. Obviously, I do not see this doctor anymore because he didn't take my FM seriously enough. Anyway, after taking only two doses of this drug, I couldn't breathe, I almost went to the ER, but breathing problems got better once I stopped the drug.

    I also remember feeling paranoid when I took it, maybe because my breathing was so labored when I took it, I also had worse muscle aches, this drug is a nightmare.

    I have heard nasty things about it as well, but this was 7 years ago, and I didn't know. It seems like all the people who were taking this drug back then and experiencing nasty symptoms from it, have finally figured out that is a bad drug.

    My only suggestion is to stop the drug and tell your doctor EXACTLY what happens when taking it, there is no need for anymore further uncomfortable problems with these kind of drugs. Usually the side effects will go away when the drug is removed. Hugs, Chelz.
  5. lgp

    lgp Well-Known Member

    I went through absolute HELL with Levaquin last winter, also prescribed for an inflamed sinus. The aches in the backs of my knees went away after a few weeks, but my digestive system went into an extreme tailspin, and seemed to set off a heightened gluten sensitivity. I am allergic to a few antibiotics but nothing was ever as bad as the Levaquin. Going gluten-free really helped; since going gluten-free I do not get sinus inflammations, joint pain, or ear inflammations any longer. My doctor believes the Levaquin could have sent the gluten sensitivity into overdrive. I've posted about this before.

    In addition to digestive issues, I had severe headaches, pins and needles in my arms and legs, insomnia issues, nightmares, etc. This drug effected me so adversely; as well I had to stop taking all vitamins and supplements to 'clean out' my system. It was a disaster. It took six months for my digestive system to finally heal. There were other problems with the levaquin, too numerous to name. Check out a website called askapatient.com and type in levaquin. You will find hundreds of entries of people who have had very bad results with this drug. There are numerous lawsuits nationwide, and this drug has been black-boxed.

    I truly believe under no circumstances should anyone take this drug.


    [This Message was Edited on 10/31/2009]
  6. gb66

    gb66 Well-Known Member

    I took Levaquin several years ago on several different occasions for sinus infections. I broke the pill up into tiny doses and the only trouble I had with them was a rash on my neck and face. From what I've learned since, I was lucky. This was after a week or so. I am so thankful I didn't take the reccommended dose of 500mg that my dr. wanted me to take.

    The only antibiotic that I can tolerate is Doxycycline. I just take 2 doses a day of 50 mg. tablets (have to break a 100mg. in half) and it has been okay so far. Have you tried this one? I hope your legs heal soon. Maybe you should get a checkup.

    Also, the doctor I have now said one of her patients took Levaquin and ended up in the emergency room and nearly died. She doesn't prescribe it any more. GB66
    [This Message was Edited on 10/31/2009]
  7. SnooZQ

    SnooZQ New Member

    About 5 yrs. ago, my college-age DD was in serious condition following 2 doses of Levaquin. She was diagnosed with "threatened tendon rupture" at 8 different joints in her body, due to the fluoroquinolone, which of course was immediately discontinued. She needed to use a motorized cart to get around for several weeks.

    Some of the internet research she did suggested that Levaquin is a strong chelator of minerals, and that some people were reporting that supplementing copper was helpful.

    DD tried the copper, and recovered with only occasional residual pain (on overdoing), but it did take some time. How much of her recovery was due to copper supps, and how much to regular healing processes, I don't know. She did find the copper supps hard to take (caused nausea), ended up taking 1/2 caps at a time.

    At least your doc tried other ABx before the quinolone. My daughter's college doc put her on it for the second day of a mild respiratory infection that probably should have been treated with rest & chicken soup ...

    Best wishes.
    [This Message was Edited on 11/01/2009]
  8. m1she11e

    m1she11e New Member

    I appreciate everyone's input. Last night I passed out in the bathroom. I dont know if it is the Levaquin or the sinus infection. Maybe the Levaquin did throw the mineral balance off in my body?? I have never passed out before. I was alone and it was awful.

    A friend is coming to get me. I think I am going to the Emergency room just to have it all documented and have some tests run to see if something shows up.

    What a mess I have got myself into by taking this drug!
  9. goodguess25

    goodguess25 New Member

    I took alot of magnuiesm, antixidated vitamin,A.B,C,D,E, K, . took me a couple of month to recover completly and I only took one and got extremely disoriented, I was hearing things that were not there. My heart beat was rapid and evertime I felt vibrations from the car, or my shopping cart, or walking on rough uneven surface it felt like it skipped a beat and would hurt really bad in my chest, this lasted 2 weeks. I spent the next two month with my knees swelling so much I could not put my jeans over my knees. Wore a lot of my husband baggy sweats and slept alot. I also elimated as much flouride by drinking water that had been filtered by reverse osmiso that include making all my drinks making coffee cooking and what not with it. I also elimated any medcine containg flouride. You would be surpised by how many medcine and vitamins contane flouride. Aleve, prevacide. Also watch your jucies because alot of them are concetrated with muncipal waters.
  10. cbs1234

    cbs1234 New Member

    Go back and research my posts regarding levaquin. I took 28 pills in summer 2001. Although I am doing very well compared to the first few years, my tendons still haven't recovered fully. I was very, very athletic prior to the levaquin. Great shape and played every sport in the book. I can no longer participate in many of the sports I love but I can bike vigorously so thats how i stay in shape.

    There are no known "cures" for the levaquin reaction.

    Good luck to you.
  11. richvank

    richvank New Member

    Hi, m1shelle and the group,

    I'm very sorry to hear about the adverse effects you have experienced from taking a fluoroquinolone antibiotic.

    I have done some study in the past to try to understand the damage mechanism of these drugs and why people with CFS seem to be more sensitive to experiencing adverse effects from them.

    According to Goodman and Gilman's (the pharmacology "Bible") the quinolone antibiotics bind mineral ions that have a +2 oxidation state. These include magnesium, manganese, and perhaps some others. Doctors are instructed not to give magnesium together with these antibiotics, because it can reduce their potency. Of course, it can also deplete these minerals in a person who is already low in them. As you may know, PWCs are often found to be low in intracellular magnesium. So this may be part of the reason for the sensitivity.

    It's also been found in the literature that these drugs produce oxidative stress. Perhaps this is a consequence of depleting certain ions. For example, manganese, copper and zinc are all used in the superoxide dismutase enzymes, which normally help in dealing with oxidative stress. As you may know, oxidative stress is already a feature of CFS, so adding to it may also contribute to the sensitivity of PWCs to these antibiotics.

    The damage mechanism in the tendons and cartilage appears to be that the oxidative stress raises the level of hydrogen peroxide, and the hydrogen peroxide stimulates the production of matrix metalloproteinases, which in turn attack the tendon and cartilage tissue.

    As you probably know, I can't give individual treatment advice unless a physician is involved to review my suggestions, but generally speaking, it would appear that supplementing essential minerals and also using antioxidant supplements, as has been mentioned by others here, may help to counter the damage mechanism. Rebuilding tendon and cartilage tissue might be helped by ingesting gelatin (such as Knox gelatin), since it contains the amino acids needed to make collagen.

    As I have posted in the past, the long term solution to the oxidative stress in CFS is to raise the level of glutathione to normal, and the best way I have found to do that is to lift the methylation cycle block. You have probably all read my posts about the Simplified Treatment Approach that is designed to do this.

    I hope this is helpful. Please work with your physicians if you decide to try any of the above.

  12. m1she11e

    m1she11e New Member

    I really appreciate everyone's comments.

    Rich, everything you have said makes sense. I have started to do most of the things you mentioned (with my doctors supervision of course) and I will add the gelatin. I forgot about gelatin and how I used to use it for hair and skin at one time. That is a simple, inexpensive thing that I can easily incorporate. I also started Liposomal Glutathione. I know that some people have issues with Glutathione but I always feel better when I take it.

    I went for my first low level laser therapy treatment today. Another doctor recommended I find some one with a the right kind of low level laser and that it would take down inflammation and start to rebuild the damage. They said I should start to feel a difference by my second treatment but to still take it easy on them.

    Hopefully the combination of these things, and time, will help me to heal. I just hate to sit back and not be able to walk and accept there is nothing that can be done.

    I will check back if the low level laser helps me. Maybe it could help others as well.

    Thanks again for your comments and support! What an AWFUL drug!!!!!!!!
  13. goodguess25

    goodguess25 New Member

    I have noticed that you have mentioned mutiple timescfs patients are more sucspectible to the adverse effects from them. I have not been dx with cfs I don't have the symptom of cfs. So is this type of reaction normal for those that have FM. I took one pill it was not like I had fluoroquinolone antibiotics before I rember being on one in my early 20s I am now 31 before my FM was dx and long before FM got bad enough that I had to quit working.

    [This Message was Edited on 11/12/2009]
  14. kjade

    kjade New Member

    I am SO sorry you are having such a horrible time after taking this med.

    I was prescribed Levaquin a few times about 10 years ago for chronic bronchitis/sinusitis. It was HORRIBLE. It made me so sick! From everything I have read about this med, I often wonder if taking it contributed to my FM. Because although I had symptoms of FM for a long time before that, it was after taking the Levaquin that it got significantly worse.

    Hope you are feeling better!!
  15. richvank

    richvank New Member

    Hi, goodguess25.

    I really don't know the answer to your question.

    I think there is some evidence that people with FM are low in magnesium, and perhaps that would make them more vulnerable to this class of antibiotics, since they are known to bind magnesium, and that could make a deficit in magnesium worse. It might also bind more manganese, copper or zinc if there is less magnesium available. This could inhibit the antioxidant system and lead to oxidative stress and thus into the damage mechanism I described earlier.

  16. m1she11e

    m1she11e New Member

    I think Kjade asked if maybe Levaquin made her FM worse. Of course I dont know the answer but I can tell you this... I have had CFS for 28 years. Pain has never been an issue. I do get aches and my legs can get really weak but I have never needed any kind of pain medicine for it.

    I do still have the Achilles and calf pain. I have to keep my ankles wrapped and cannot be on them for very long. Yesterday was the first time I was able to go to the grocery store and I had to be very careful and supported myself with the cart. (Not ready to saddle up the riding cart) I do think they are improving.

    BUT, I now have pain in all of my joints. If I have typed much my wrists and arms will hurt. If I strain any part of my body in even the slightest way it will be very sore. My calf muscles always feel on the verge of cramping and I will get shooting pains with the slightest movement.

    I am also very stiff everywhere. My whole body just hurts now and every day I feel as if I had a tremendous work out the day before. My joints feel like I am 80.

    Im mentioning all of this because I do wonder if some people could get worse or even develop Fibro symptoms after a Levaquin type antibiotic??? How many people could have taken one without even knowing???

    Wanna hear the real fun part to this...I finally went to an ENT for my "sinus infection." She looked in my nose, ears and I did the aaaaaah for my throat. She declared that I have MAJOR allergies and doesnt think I ever even had a sinus infection to begin with.
    Basically all of the other doctors heard my head was always stuffed, I had a low grade fever, I had post nasal drip and felt AWFUL and asumed it was a sinus infection. When I got the Levaquin I was going to ask for a culture but I was so exhausted and run down I just took the antibiotic. What a mistake!!! So, all this damage I am trying to undue was totally unnecessary.

    I am getting low level laser on my Achilles and after the second one I was able to take the trip to the store. I am taking Glutathione. I do Rich's protocol. I take lots of Magnesium.
    Im taking an ionic mineral supplement. I am also taking a Collagen supplement. I take alot of other good stuff that I took long before I was poisoned...

    Maybe this combination will give me a good chance to recover. I hope that this thread will stop some one from taking Levaquin or help some one who already has.

  17. redhummingbird

    redhummingbird New Member

    I'm so sorry you are having to deal with this on top of ME/CFS.

    Three weeks ago I was prescribed Cipro (same family as Levaquin) for a staph infection. I only took 3 doses but my experience was awful. I started having pain in my achilles in addition to other intolerable side effects.

    The pain is getting better and I'm able to walk better. I tried staying off my feet (which wasn't too difficult given I've been bedbound for the better part of the last 3 weeks).

    I too am on Rich's simplified protocol and I think that has helped.

    I hope you recover quickly...