Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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CNN article: 'Bubble girl' is allergic to life

Discussion in 'Mast Cell Disorders/Mastocytosis' started by PearlGirl26, May 1, 2015.

  1. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    ahmo likes this.
  2. Valentijn

    Valentijn Senior Member

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    ebethc, Sushi, Gingergrrl and 2 others like this.
  3. Sidereal

    Sidereal Senior Member

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    Same person as in the Cosmo article linked to on @Gingergrrl's thread.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Wow, poor Brynn, but she is handling it well at such a young age. Hoping I don't end up that bad with my current mast cell problems! :eek:
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    I didn't read that one yet but I will.
     
  6. taniaaust1

    taniaaust1 Senior Member

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    That's a great article. I didn't know till I read it that mast cell activation disorder seems to be just as serious as systemic mastocytosis.

    My allergist wouldn't give me that skin prick test as he's worried I may go into a life threatening reaction as I had major dangerous reaction and I don't know what it was too which I ate. (I'm suspecting it was to a plum). I need a lot blood tests to work out what I react too in which they don't put the allergen onto you.

    .................

    Im looking forward to when the day comes when I can see a mast cell expert as I really think I have some kind mast cell issue going on. Like my uncle with masto it was interesting to note that her BP also goes up too at times as well as low (mine does the same).

    That I found very interesting. I had allergies I don't have now... I couldn't have dairy for a long time (headaches from it) but now can have it.
     
  7. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    I think so many of us with CFS/ME fall under this cluster of POTS, MCAS, EDS/JHS and would benefit from appropriate treatment. The problem is most of the expert CFS doctors aren't trained to recognize it unless the person is a "shocker" like Brynn or can do circus tricks with their joints, which is a damn shame.
     
  8. Misfit Toy

    Misfit Toy Senior Member

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    My doctor believes I have MCAS. I react to almost every med or supplement. I find it interesting that she can handle IVIG. So many react to that and myself included.

    I'm not as bad as she and I can't even take that.
     
    Valentijn likes this.
  9. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    Have you tried SCIG? It's what's recommended for many MCAS patients bc the side effects are lower. Also, do your doctor premedicate you an do iV fluids before hand?
     

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