Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Fluoroquinolone Antibiotics (Cipro, Levaquin, Avelox, Plaquenil, etc.) and ME

Discussion in 'General ME/CFS News' started by abellom, Aug 2, 2012.

  1. abellom

    abellom

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    Hello all:

    I am one of many who suffer ME symptoms (including the post exertional fatigue and pain) after taking a fluoroquinolone antibiotic or other closely related drugs. Some of us with Fluoroquinolone Toxicity Syndrome (FQT) took only one pill, others (like myself) took multiple courses with delayed reactions. We also are subject to tendonitis and ruptures. FQs effect all body symptoms and destroy human DNA as they do bacterial. I have heterozygous MTHFR mutation C677T which probably made me vulnerable to the toxicity syndrome. Many of us can not tolerate commercial meats, poultry, fish or shellfish as they are loaded with FQs. Soy is very harmful to us as well. Peripheral neuropathy is common along with CNS lesions. The toxicity can bring on autoimmune conditions such as MS, SLE, etc. I myself was diagnosed with life-threatening vasculitis. Steroids and NSAIDS can worsen our symptoms and increase the risk of tendon rupture. Food and chemical sensitivity is common. Some have gotten pain relief with Low Dose Naltrexone. Many are home/bed/wheelchair bound. Some die with their first experience of the FQs. We all search for treatments (natural) that will help us. Often our labs are normal (sound familiar?) with the exception of potassium which can be very low. Our eyes are often affected with retinal deterioration and detachment occurring with some. These drugs were intended to be used in life-threatening infections only as they are so dangerous but, the MDs hand them out like candy for simple infections like sinus infections, UTIs, etc. Many are ill but do not suspect the antibiotic as their reaction was delayed and the doctors are unaware.

    Have any of you taken these drugs (cipro, levaquin, avelox, plaquenil, malarone, etc.)?

    Rich and other researchers - Do you think the B12/folate protocol may be helpful?

    Thanks so much for your time.

    AB
     
  2. sianrecovery

    sianrecovery Senior Member

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    I was just about to restart plaquenil. I didnt realise it belonged to that family of drugs.
     
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    They have been really bad for me. I do not take antibiotics that can be toxic to nerves. Has nothing to do with B12, just toxic.
     
  4. richvank

    richvank Senior Member

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    Hi, AB.

    The quinolones chelate magnesium and several other essential minerals. They also deplete glutathione. Yes, I do think the methylation protocol will help. I would also suggest taking a good multimineral to replace the minerals that have been chelated.

    Best regards,
    Rich
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Isn't it best not to use them Rich? They scare me, not so good for me. I have read so much about what they do to the nerves.
     
  6. Nielk

    Nielk

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    Hi Rich,

    You are some magician - aren't you? As soon as someone mentions your name, you are there to post your reply. How do you do this? We are so lucky to have you here with us. (for us?)

    I too have had very bad reaction to Cipro. Does this automatically mean a methylation problem?

    Thanks,
    Nielk
     
    Mel9 likes this.
  7. richvank

    richvank Senior Member

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    Hi, Neil.

    You're very kind!:) Actually, I think I miss quite a few posts that are directed to me. Sometimes people ask questions that I haven't considered before, that I will need to study to answer. I put them on the back burner sometimes, and then I sometimes don't remember, or don't find the time, to go back to them. Time is really the problem. It takes time to try to find out if the answer is known or not, if I don't know it. I'm always behind on emails. I try to respond to questions on the forums, because more people can read them, and there is thus "more bang for the buck."

    I don't know, but I do suspect, that the people who have trouble with the quinolone antibiotics are already somewhat low in glutathione and magnesium. Those are hallmarks of ME/CFS, so I think the people in this community are particularly vulnerable to adverse effects from quinolones.

    I'm sorry that you had a bad reaction to Cipro.

    Best regards,

    Rich
     
    Mel9 likes this.
  8. aiden424

    aiden424

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    My mom had a severe reaction to Levaquin. Within 3 to 4 days of starting Levaquin she had severe leg pain and weakness in both legs. She ended up in the hospital for 3 days, and then a nursing home. It put her in a wheelchair! She is 77 years old. So I don't know if age had anything to do with it. That was last fall and she has not fully recovered. She has been seen by all kind of specialists with no answers. They said after ruling everything else out that it was the Levaquin.

    Kathy
     
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Levequin was what I believe my problems came from, but the others are also bad for me.
     
  10. sianrecovery

    sianrecovery Senior Member

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    so what to use for protazoan infections?
     
  11. richvank

    richvank Senior Member

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    Hi sian.

    Some people have success with the Paradex Herbal Formula.

    Best regards,

    Rich
     
  12. sianrecovery

    sianrecovery Senior Member

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    thanks Rich. I started the methylation protocol and then stopped when diagnosed with protomyxzoa as dr Fry felt B vits were problematic in biofilm formation - I wondered if you'd seen his work or had any contact with him?
    Will look up Paradex.
    Abellom - just to be clear - you feel all quinolones are problematic, or just the FQ?
     
  13. m1she11e

    m1she11e Senior Member

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    I have to speak up here because I wish I had known HOW BAD this family of abx can be. I have taken Cipro on more than on occasion with no problems. Levaquin caused severe muscle cramps within the second or third dose. I stopped it but my Achilles tendons were so tight and painful I could barely walk (literally could not point or flex so walking was almost impossible) for 4 or 5 months. I had to wrap my ankles in ace bandages to make the pain bearable. If you go on line there are so many people with long tern nerve, brain and tendon damage from these drugs.

    I will NEVER take one again!!!! It is tolerable now but I still deal with tendonitis that I have never had prior to Levaquin. They tell you it is a very slim chance that it will happen and it is usually only to those over 60. Doctors just dont report it as due to Levaquin. Mine didnt.

    Bad drugs!! :mad:
     
    Mel9 likes this.
  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I'm sad for everyone's bad experiences with these medications.

    Just for perspective, I take hydroxychloroquine (generic for Plaquenil) in a low dose (I am small) for positive ANA and it improves my joint pain. I believe it reduces my PER as well. I get my eyes checked and they are doing fine (I had one examiner say they'd never seen a bad reaction, but I didn't let them discourage me from being concerned enough to be diligent with checkups! There's a reason for the warnings) I'm told this medication has a synergistic effect with antibiotics for long-term infections (such as Lyme)

    It's a bit troubling that it messes with methylation, however. I do not have any provider who is interested in that as a treatment strategy.
     
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  15. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    m1she11e, I agree, a scary group of meds. There are others too. SO many cause neuropathy.
     
  16. sianrecovery

    sianrecovery Senior Member

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    so now i'm understanding the FQ have a flourine atom attached, the hydrocholroqunines a chorine atom- flourine being very reactive, and chlorine less so, but still somewhat reactive. Plaquneil seems to have a much less scary safety profile than the FQ, and I would go ahead, other than my initial experience of tendonitis...which may have an associative, rather than causative relationship, but I just dont know....I think I may stick with the herbal quinones, samento and banderol, which obviously are less studied, but do seem to have less risk.
     
  17. jen1177

    jen1177

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    I believe that plaquenil is NOT a flouroquinolone, but I'm not %100 sure. I did do some research to decide if I should take plaquenil or not and found it to be in a group of antimalaria drugs and considered separate from the flouroquinolones. But, I'm going to double check now. :)

    I just checked on the web again and plaquenil is a chloroquine, not a quinolone. Rarely it can cause damage to vision by destroying the retina. But I found nothing to make me think it is as dangerous as the quinolones are.
     
  18. sianrecovery

    sianrecovery Senior Member

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    I'm told plaq is a choloro rather than flouro quinolone, therefore less reactive, but still with risks. I just saw dr Fry again and he thought my IRIS type response was encouraging rather than discouraging, and said palq works well with doxy. I may try again at a greatly reduced dose.
     
  19. waif

    waif

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    hi, I have to bump this thread
    I have EDS and mysterious peripheral neuroparhy, (fwiw i took cipro many times in my 20s)
    recently i found out my c3 c4 are extremely low, indicating i might have an AI disease (my ana tests were negative)

    so you guys are saying cipro and plaquenil are not in the same drug class? because i'd seriously considering taking plaquenil if it'd bring my c3 c4 into a healthy range. my hands are numb 24/7

    i tried to google floxies and low c3, c4 and nothing came up. so it's possible my immune system is suppressed from something entirely different
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    @waif They are NOT in the same class of drugs. Cipro is a fluoroquinolone antibiotic and Plaquenil is an anti-malarial drug that is also used as an immunosuppressant.

    I was floxed by Levaquin in 2010 and had fluoroquinolone toxicity syndrome (FTS) but have never taken Plaquenil.
     
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