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PANDAS/PANS treatment protocol for ME/CFS?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Aug 19, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Several doctors are now using the Cunningham autoantibody panel to establish a case for autoimmunity in ME/CFS patients. These same autoantibodies have been linked to PANDAS/PANS, a post-infectious autoimmune disease affecting children.

    A treatment protocol has emerged for PANDAS that mirrors some of the more successful ME/CFS treatments. The difference seems to be that more mainstream doctors are willing to accept and implement these treatments for PANDAS than for ME/CFS. Furthermore these treatments are implemented in a systematic and complementary way thus improving the outcomes; e.g. underlying infection is treated at the same as autoimmunity.

    You will find many PANDAS communities with stories of recovery from these protocols. I wonder if the same might be true for ME/CFS (at least a subset) if these same treatments were more regularly used.

    Treatment protocol:
    • Antibiotics: penicillin, amoxicillin, erythromycin, azithromycin, and clindamycin

    • Immunomodulation: IVIG, plasmapheresis, prednisone, rituximab, cellcept, and cyclophosphamide

    • Supportive: CBT, antidepressants
    Cunningham panel / PANDAS autoantibodies:
    • Anti-Dopamine Receptor D1
    • Anti-Dopamine Receptor D2L
    • Anti-Lysoganglioside GM1
    • Anti-Tubulin
    Pathogens linked to PANDAS onset:
    • Mycoplasma pneumonia
    • Streptococcus pyogenes
    • Various strains of Lyme
    This is an interesting read on a young girl who recovered from severe PANDAS using rituximab and helminths
     
    Last edited: Aug 23, 2017
    pattismith, pibee, MEMum and 12 others like this.
  2. Skippa

    Skippa Anti-BS

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    VERY interesting, thanks...

    But...

    One can't help but notice...

    CBT and antidepressants crop up everywhere!!

    Jeez, cure them of x but create a patient for y indefinitely...

    Anyways, the rest of it is cool :)
     
    MEMum, Sancar and Charles555nc like this.
  3. Jesse2233

    Jesse2233 Senior Member

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    Hahah yes I almost didn't include that part. I suppose if you have treatments targeting the actual disease palliative care can be beneficial.
     
  4. Vojta

    Vojta Senior Member

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    Hi @Jesse2233, I just found out today I'm positive for anti dopamin D1 and anti tubulin in cunningham. I'm also positive on 2 antibodies in celltrend test. Dr. suggested Rituximab.
     
    Last edited: Sep 22, 2017
    pattismith, MEMum, Hanna and 3 others like this.
  5. Jesse2233

    Jesse2233 Senior Member

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    This is an excellent in depth discussion of PANDAS treatment protocols and recovery

     
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  6. Diwi9

    Diwi9 Senior Member

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    The Cunningham Panel also tests for the following, as described on their website:
     
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  7. el_squared

    el_squared Senior Member

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    I just got my Cunningham Panel test results back. Will be a few weeks before I see the doctor who ordered test to discuss.
    I am elevated on three out of the five markers. If anyone can opine on the significance, what these means, please chime in...
     
    Dakota15 and used_to_race like this.
  8. Dakota15

    Dakota15 Senior Member

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    @el_squared I know this bumping an old thread from quite some time ago, can I ask which markers you were elevated in? Was one of them CaM Kinase II?

    Feel free to PM me if you'd prefer that route
     

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