International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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ME/CFS is a mast cell disorder (hypothesis)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 12, 2012.

  1. justy

    justy Donate Advocate Demonstrate

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    Have you had a bone marrow biopsy to rule out mastocytosis? This should be done if Tryptase is high.

    No idea if anything can be done about it. I take a lot of vitamin c as well.
     
    ebethc likes this.
  2. brescl

    brescl

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    how do you test for it
     
  3. ahmo

    ahmo Senior Member

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    @brescl My understanding is that only bone marrow biopsy can determine MCAS. I'm certainly not going there. I treat myself symptomatically. My MC situation is relatively mild, but as w/ all the other symptoms, when it flares, not nice. I'm using royal jelly daily, and add mangosteen when I have flares. Seems to work.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    My understanding is that the bone marrow biopsy is the gold standard test for mastocytosis but for MCAS it is often based on clinical symptoms combined with elevated histamine and prostaglandin levels. Tryptase is another test that can be used for both but is often more indicative of mastocytosis. I have never had elevated Tryptase, even at my most severe in 2015. A good place to start is "Mast Attack" which is a blog, website, and FB group.
     
    Jennifer J likes this.

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