Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Lyme and autoimmunity

Discussion in 'Lyme Disease and Co-Infections' started by msf, Jul 20, 2015.

  1. msf

    msf Senior Member

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  2. duncan

    duncan Senior Member

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    Some people feel Steere doesn't have the best record when it comes to making the right call about Lyme disease...
     
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  3. msf

    msf Senior Member

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    Why?
     
  4. msf

    msf Senior Member

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  5. duncan

    duncan Senior Member

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    Why do I say that, or why is he like that?

    Why I say it, is because of his history. It is very hard to separate the history of Lyme in the US and Steere's involvement and influence.

    His name is on scores of Lyme studies.

    Do you see the focus is on Lyme arthritis, mostly in the knees? Wanna know why he focuses on that? Some would say it's because it's an overt symptom that cannot be denied (unlike arthralgias and cognitive issues and vertigo etc). Rather than admit its persistent Lyme, he chooses to put forth it's an autoimmune response caused by Lyme.

    Maybe he is right, but this man is one of the reasons ILADS was formed.

    Also, if he IS right, I think he would pretty much say that this autoimmune response is generally limited to knees...
     
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  6. msf

    msf Senior Member

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    Well, at least he isn't suggesting it's ALL in their heads.
     
  7. xrunner

    xrunner Senior Member

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    a few conflicts of interests as well...?
    http://www.openeyepictures.com/references/UOS2_claim_references_3.pdf

    "Conflict of interest policies typically screen for conflicts within the last year or two years, and 'key opinion leader' relationships with industry may span a career [35]. For example, one researcher on the IDSA Lyme guidelines panel, Allen Steere, has relationships spanning more than a decade with Lyme vaccine manufacturers [10,36,37]. "
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/
     
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  8. duncan

    duncan Senior Member

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    Actually, the Olde Lyme Guard hasn't been all that shy with suggesting chronic Lyme is nothing more than some misguided or delusional people describing what amounts to as "the aches and pains of everyday life."

    Arthritic swollen knees cannot be denied as such. They are visible, undeniable signs that originate with Lyme, and often fail to resolve with IDSA-recommended treatment. But ALL IDSA recommended treatment is supposed to resolve all cases of Bb.

    So, Steere tries to explain away this very overt symptom that defies those Guidelines. He tries and he tries.
     
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  9. msf

    msf Senior Member

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    That's why i stressed all. The way I see it, the urge to find another explanation for Chronic Lyme may help to connect the dots between the autoimmunity ME stuff and the ILADS stuff.
     
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  10. duncan

    duncan Senior Member

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    Understood.

    I wish someone other than Steere or Aucott were pursuing that connection in earnest. For instance, the NIH, which as far as I know, is not. Moreover, Steere's focus is pretty much on swollen knees. Other areas of chronic Lyme, arguably not as much.

    Intent is a key factor here.
     
  11. msf

    msf Senior Member

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    Yes, hopefully ILADS will start looking into this too, so we don't only get the IDSA take on it.
     
    Last edited: Jul 20, 2015
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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I wouldn't worry too much about the politics. I have only seen the abstract but there are no interpretable data there. Not so long ago an abstract written like this would be an immediate trigger for a 'reject' response by any sensible referee. There are no figures for controls. The only figure there is can't make up its mind if it is 11 or 15. The synovial findings make no sense at all to me (I wrote a book on synovium once - the only book on synovium in fact).

    I wouldn't hold your breath.
     
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  13. msf

    msf Senior Member

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    I imagine the 11-15% is because they tested three groups of Lyme patients. It would be great if someone had access to this so Prof. Edwards can pick it apart properly!
     
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  14. duncan

    duncan Senior Member

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    I would like to take those patients he has qualified as suffering with Lyme arthritis refractory to abx, and run some diagnostics on them, including the C6. In the actual study, I suspect he explains how he qualifies the cohort. What I want to know is why he assumes he needs to be looking for an autoimmune explanation. Occam's razor and all that.

    I would also check for a a GLQP protein (for b miyamotoi), and check for garinii and afzelli. I would run as broad a group of Borrelia tests - genus level - as are available. I'm not sure there are any; but in lieu of that, I'd run as many species tests as they have, as bad as those tests may be.

    I'd run Bb sensu lato WB values and stack them against other accepted protocols for two or three bands IgG to equal a positive.

    Then I'd write a paper about those results.

    I know there isn't any point in trying to culture Bb from the synovial fluid. I know odds are a PCR will fail. They also would likely fail in a cousin spirochete, Syphilis.

    So I would preface my write-up with those salient points. If my anti-body tests suggested continued infection, I would run with that.
     
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  15. duncan

    duncan Senior Member

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    I am always part amazed, part taken aback, and part appalled by some of these IDSA-types efforts. It's like they don't read other independent researchers' - not dogma-driven - studies.

    Lewis and Zheng have demonstrated, quite convincingly, that Borrelia persisters post-treatment exist. Zheng is working on repurposing abx with a pulsing technique to help with these persisters.

    But studies like this one from Steere and company keep coming hot and heavy, as if those independent efforts never happened.

    Not unlike what BPS advocates do with ignoring all the biomedical evidence for ME/CFS.

    It's...unfathomable.
     
  16. Antares in NYC

    Antares in NYC Senior Member

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    LOL! :lol:

    So true and sad. As per Steere, Lyme is a disease of the knees that's totally and completly cleared with four weeks of antibiotics.

    I often wonder if the IDSA bunch buy their own BS.
     
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  17. msf

    msf Senior Member

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    Well, they can see knees...
     
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  18. duncan

    duncan Senior Member

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    ...What they cannot see, does not exist.

    Perhaps more to the point: What most others cannot see, does not exist.
     
    Last edited: Jul 21, 2015
  19. GcMAF Australia

    GcMAF Australia Senior Member

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    There are whole communities of researchers that are angry with the CDC, and IDSA.
    There is consideration that there is some collusion between these bodies and others who are holding back medical progress.
    These people are rolling on with making progress in diagnosis, treatment and political awareness.
    There have been many approaches by the Lyme communities to governments in US Australia and Great Britain.
    Progress is being made.

    Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

    (29,300 signatures and growing worldwide)https://www.change.org/p/the-us-sen...sional-investigation-of-the-cdc-idsa-and-aldf

    I think that there have been other petitions
    As well there have been presentations to various State governments
     
  20. GcMAF Australia

    GcMAF Australia Senior Member

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    Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

    (29,300 signatures and growing worldwide)https://www.change.org/p/the-us-sen...sional-investigation-of-the-cdc-idsa-and-aldf

    I think that there others.
    There have been presentations to State govs as well.

    In Australia presentations have been made to the Australian Human Rights Commission which in some ways is above the elected government.

    The Lyme community is taking the fight right to the top, with dramatic increases in community support and awareness over the last 3 years
     
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