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New Theory and Treatment for POTS, EDS, and MCAS/D

Discussion in 'General ME/CFS Discussion' started by Isaiah 58:11, Jan 12, 2016.

  1. Isaiah 58:11

    Isaiah 58:11

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    A Sun-Scorched Land
  2. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
  3. Isaiah 58:11

    Isaiah 58:11

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    A Sun-Scorched Land
    Oh, oops! Is it ok to just delete my post then?
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    Yep. You night want to look on Health Rising forum. . I know Doris Driscoll posts over there and may have more info.
     
  5. leela

    leela Slow But Hopeful

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    Please leave it, @Isaiah 58:11 , it's good to be reminded of Dr Diana, I always forget about her. In fact, I didn't know she had started treating. I used to really enjoy watching her "Pretty Ill" videos.
     
    justy and Isaiah 58:11 like this.
  6. Hip

    Hip Senior Member

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    It seems that Dr Diana Driscoll theorizes that for those with Ehlers-Danlos Syndrome (EDS), the cause of their POTS is due to a combination of:

    • External Communicating Hydrocephalus
    • Chronic Cerebrospinal Venus Insufficiency
    • Mast Cell Disease

    Treatment of the above recommended by Dr Driscoll is:

    • Diamox (acetazolamide)
    • H1 and H2 inhibitors

    I presume this will only apply to EDS patients with POTS.


    See: The Driscoll Theory: The Role of External Communicating Hydrocephalus, Mast Cell Disease and CCSVI as the cause of POTS (Postural Orthostatic Tachycardia Syndrome) in Ehlers-Danlos Syndrome
     
  7. justy

    justy Senior Member

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    I read the interview this week as well and thought it looked very interesting. I have EDS and MCAS and Lyme/M.E. It seems she has a clinic where they intensive study of the patient over 1 week. She also treats patients with chronic Lyme as there is a big overlap with EDS MCAS and Lyme.

    Not sure about the supplements yet as I haven't looked into them enough.
     
    jimmy86 likes this.

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