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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

Jennifer

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  • May 4, 2012 at 2:33 pm in reply to: Where do I start if I think I could have a Mast Cell Disorder? #2110
    Jennifer
    Participant

    Hello. I just wanted to give you an update. I did go to the allergist and they ran the tryptase test and some other blood work all which was all negative. All my tests over this past 10 months have been negative. The allergist did let me trial gastrocrom though and it has made a world of a difference! I can now eat somewhat back to normal again! It has really helped me. I suspect I may have some type of mast cell activation syndrome that has not been diagnosed, but have not been able to prove that yet.

    Also, interestingly enough my holistic doctor did find an underlying protozoa parasite that was treated once with antibiotics. It also needs
    to be treated with herbs, but I get skin rashes with so many herbs combined that I am having a hard time following that protocol.

    Anyways, now I am going to just continue to take my sodium cromolyn and hope I continue to feel better. I don’t know if I will have to
    take it from now on or not at this point…. I am now realizing that I have some pretty bad sinus pressure which is the next issue I will have
    to try and find relief for!

    Goodluck with your daughter’s appointment!

    Jen

    February 21, 2012 at 3:23 pm in reply to: Where do I start if I think I could have a Mast Cell Disorder? #1758
    Jennifer
    Participant

    I have an appointment in March with an allergist, so if I find anything out I will let you know! I would suggest finding a good functional medicine doctor (also called holistic/or osteopath) in your area if you have not done that already. Maybe they can help too… I am
    seeing a combo of doctors! They all have very different ideas, but I will take any at this point! I will keep you posted!

    Thanks! Jen

    February 21, 2012 at 12:55 pm in reply to: Where do I start if I think I could have a Mast Cell Disorder? #1755
    Jennifer
    Participant

    Thanks for the response! Yes, I think I am going to start with allergist too! How old is your daughter? I had a LEAP-MRT
    test for food sensitivities done by my osteopathic doctors and it did show some sensitivities that I was unaware of that were
    helpful- sodium sulfite being high up there. I would have had no idea I was reacting to that had I not had that testing.
    I think the ELISA is similar, but neither test is offered by any allergist I found. My osteopathic/holistic doctors also had me
    also undergo a comprehensive stool analysis (CDSA) and that was just completed and did show some bacteria and DNA from an
    unknown parasite. So now they want me to treat those so we’ll see what happens! I think I am going to start with the allergist
    myself to ask them to run serum Tryptase and Histamine ( If I am spelling those correctly). I think those are the 2 tests that
    should be run first- If anyone else has any other suggestions please let me know!

    Thanks again for your response and goodluck with your appointment! Jen

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