Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Has Anyone Seen Dr. Lawrence Schwartz for MCAD?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Scotty81, Jan 20, 2016.

  1. Scotty81

    Scotty81

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    Hi,

    OK, this is a 2-part question.

    It's possible that my daughter, who has CFS, FM and GI issues, may have an underlying mast cell activation disorder. She is going to get the initial round of testing for tryptase and other potential markers. I do know that even if such markers are negative, that it's still possible that she may still have MCAD.

    My 1st question is whether anyone has seen Dr. Lawrence Schwartz (rheumatologist) in Richmond, VA and if they know he treats MCAD. I believe he does. If anyone has seen him, can you share your experiences?

    My 2nd question is that as far as treatment, I know the standard ones are an H1, H2 blocker and cromolyn sodium. If that treatment protocol doesn't work, then I wonder if he would consider more out of the box treatments? Or, would he be more of a conservative practitioner who only offers traditional treatments?

    The reason I am asking is to see if it would make sense to see him vs. someone more locally.

    Thanks in advance.

    Sincerely,
    Scotty81
     
    Last edited: Jan 20, 2016
  2. justy

    justy Donate Advocate Demonstrate

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    Many people try Ketoifen before cromolyn sodium, or as well as, depending on what the main symtpoms are. It can also take a long time to get the right H1 and H2's - some work, some don't some cause reactions...its a merry go round trying to get the drugs all right.

    Other than medication, the only other things I think can help are Vitamin C, Neuroprotek or Quercetin, Low H diet and anything else that reduces inflammation. MCAS is also more likely if she has EDS or chronic infections like Lyme. I have them all - M.E, Lyme and co infections, EDS and MCAS.

    I wish her luck! I found some good FB groups for MCAD's, with a lot of knowledgeable people.
     

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