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ME/CFS and the Magic of the Canine Factor
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SPECT Brain Imaging in Chronic Lyme Disease

Discussion in 'Lyme Disease and Co-Infections' started by RustyJ, Aug 19, 2012.

  1. redo

    redo Senior Member

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    Reading the study I find it pretty much about ME as well as lyme. There's no proof that the patients in the study were suffering from a active borrelia infection. Rather, it seems to me that the lyme (after the acute infection is gone) kick starts ME symptoms, just like giardiasis and mononucleosis can do. The patients get better with treatment, and they didn't have to have a positive lyme test to begin with. I think it's immune modulation via some pathway (e.g. via effects on the endothelium or the gut flora) which brings about the symptom alleviation when given the biaxin/plaquenil. A clue as for what's causing the symptom improvement, is that most patients relapse when they are off the antibiotics...

    RA patients also often times get better from plaquenil.
    Jacque likes this.
  2. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Brisbane, Aust
    I am not sure I understand all that this paper says, but is it really saying salt water may be just as good as an antibiotic for some pathogen treatment? If some patients have enteric pathogens as a primary or secondary cause then simply drinking highly salted water as a therapy may provide improvement. I think the salt water protocol would have been discussed before on this forum. It is a somewhat controversial treatment, but this paper seems to suggest it has merit.
  3. anciendaze

    anciendaze Senior Member

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    More than simply possible, doxycycline and minocycline definitely do have some antiviral activity. Even stranger fluoxetine (Prozac) strongly inhibits coxsackie-B in vitro. I now believe most SSRIs have some antiviral activity. This leads me to question just what we are treating.

    I first became suspicious when I read reports of some patients with very recent onset schizophrenia recovering after treatment with minocycline. Even when you stretch the idea of recent onset to three years you can still find unusual antibodies in that disease. Doxycycline even has an effect on plasmodium falciparum, making it an antimalarial. When the same drug can be an antibiotic, antiviral, antiretroviral and antiparasitical agent it is really hard to figure out what problem it might be correcting in patients.
    Jacque likes this.
  4. Jacque

    Jacque Senior Member

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    Well..... that makes complete sense to me... I have Lyme, 4 active Viruses, and Protomyxoia parasite... When I take Doxycycline I get SO sick I almost go to the ER... and I become extremely suicidal! My brain swells and I get all symptoms of meningitis. Consequently I don't treat the Lyme. It is just so difficult to go from feeling like complete CRAP to wanting to DIE... Thanks for info.
  5. Jacque

    Jacque Senior Member

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    Wow I have to read this on a less BRAIN DEAD day... but I do know there is a protocol for Lyme of Salt and Vit C and I have also heard or taking up surfing being a miracle for some.... hmmmmmmmm?
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Jaque,
    ah ha! so it's true we are...THE WALKING DEAD! :p

    left-4-dead-poster.jpg
    Jacque likes this.
  7. Jacque

    Jacque Senior Member

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    Makes complete sense!!! Curious to hear what you are doing for your Lyme Treatment???
  8. Jacque

    Jacque Senior Member

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    The Lyme Zombies....not it all makes sense...
  9. Jacque

    Jacque Senior Member

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    The book: Betrayal of the Brain is very interesting and pointed in this direction altho I cannot find a Doc who will experiment with his theories... Of course the MD RETIRED...AFTER writing the book... grrrrr
  10. redo

    redo Senior Member

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    I'm on Biaxin and amoxicillin (and metronidazole on and off). Without it I wouldn't be able to come to these boards and post even on occation. Interestingly enough my own experiences coincide with the ones in the study: Biaxin (in combination) works best. Tetracycline, doxycycline and ceftriaxone, works not so well.

    What I really think we can take from the study, is that the people with CFS responds just as well to the antibiotics as people with CLD. And it's no surprise, take a look at what CLD really is, it's ME/CFS symptoms which comes post an infection. And IMO, it doesn't really matter if the trigger is EBV, giardia or Borrelia.

    One could wonder if what's seen in the antibiotics study on CFS and CLD patients by Donta is merely a placebo effect. To that I have three comments:

    1) If it was a placebo effect, one wouldn't expect that the people given the different antibiotics responded significantly differently (since a pill is a pill). Except for the antibiotic given intravenously, were one would expect a better placebo effect. But in fact, the group given the intravenous ceftriaxone performed poorly.

    2) The patients doesn't simply say they get better, one can see it on the SPECT scans. This rules out patients simply assuming/thinking that the treatment has worked, and responding accordingly when asked about their symptoms.

    3) A large study was done on people with ME symptoms post an infection (read: chronic lyme) and they found the following about placebo effects treating that group: Among the seropositive patients who were treated with antibiotics, there was improvement in the score on the physical-component summary scale of the SF-36, the mental-component summary scale, or both in 37 percent, no change in 29 percent, and worsening in 34 percent; among seropositive patients receiving placebo, there was improvement in 40 percent, no change in 26 percent, and worsening in 34 percent (P=0.96 for the comparison between treatment groups). The results were similar for the seronegative patients. So, using the antibiotics ceftriaxone and doxycycline (antibiotics which performed poorly in Donta's study) they found out that they didn't have a effect better than a placebo effect. In Donta's study other antibiotics (plaquenil/clarithromycin) have a great effect, and the ones expected to not perform better than a placebo (ceftriaxone/doxycycline) didn't do so well.

    Since the patients tend to relapse once off antibiotics, I think what we're seeing in the Donta study on CFS and CLD is an immune modulating effect from the antibiotics. Both clarithromycin and plaquenil are known to modulate the immune system... And this is good news for ME patients, since it means they'll have the odds on their side if they decide to give it a go. From my experience, 2-3 months in, one would except a major symptom alleviation.
  11. Jacque

    Jacque Senior Member

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    Well... I am gonna keep this all in mind. Dr. Kogelnik is not in ANY way on board with Antibiotic treatment for the CLD... and I cannot intelligently convey to you why he feels this way. He basically said it is not dealing with the immune dysfunction and there are so many relapses etc. But then again ... seems to me that that is true with all treatments available to us lab rats currently... sigh

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