Lisa
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Archived from Original Forum - deborahw author
Hi. Everyone has different symptoms. Some of us are true anaphylactic shockers; others are not shockers at all. Mastocytosis is a disease in which either has too many mast cells or they have a normal number, but they are mutated. Ultimately, the mast cells are too sensitive and are thus degranulating (releasing histamines) too easily, which causes a variety of symptoms, some annoying, some debillitating, some life threatening. Some of us have completely normal mast cells and a normal number of mast cells (which described me), yet we have mast cells that are too sensitive so we get the same symptoms as masto people. We are the mast cell disease people (my doc calls it Idiopathic Anaphylaxis; some docs call it mast cell activation disorder). I shock, but many on this forum don't shock. So, bottom line is that even if you don't have the flushing or fainting, it doesn't signify anything. Your other symptoms could be indicative of a mast cell disease, which is the reason to get to a "real" masto doc.
If it were me, I would see either Dr. Cem Akin at Univ of Michigan(my doc, but I am in Indianapolis) or Dr. Maria Castells in Boston. I googled her and found this for her contact info:
850 Boylston St Brigham & Women's Hospital AIM Suite 540 Chestnut Hill, MA 02467
Dr. Castells is closer to you, so that is who I would recommend for you. Her patients say that she is super nice and she is one of the leading researchers (along with Dr. Akin) on mast cell diseases. She is a big proponent of mast cell activation disorder, so that may be perfect for you if you have that rather than masto.
Like you, I have always been anti-medicine and never wanted to take any. I learned, though, that by taking histamine blockers as preventative rather than as treatment, my life improved 100% and I could live more normally and enjoy life again. So, for now, I take 4 pills a day of different meds. As I continue to avoid triggers, I am slowly weaning myself from cetain meds. For example, I used to take 5 pills a day, and a couple months ago, I stopped taking singulair. I am maybe a tad bit itchier than before, but I don't mind. My next goal is to reduce the zantac, but I don't know if that is possible. You asked if zantac or nexium make a difference. I imagine that it does, as the masto docs prescribe zantac to us. Just to give you an idea, I take 300 mg of zantac in the morning and 300 mg in the evening. Some people take way more than that! I would like to wean down on that, but my most dangerous symptoms are GI ones, so I don't know if that is possible.
By the way, your doc was being a fool in regard to his reason for not giving you singulair. I don't have asthma, and yet I easily got it filled and covered by insurance. (And in my opinion, my insurance company, Anthem , tried to deny as much as they can!)So, if Anthem covered it without any asthma health reason, I bet all of them do.
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