TomTomas
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Posts: 2
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Hey, thanks for your reply! : )
Yup, I drink lots of water, I feel thirsty all the time. I've been to two mastocytosis doctors in Poland, but since I don't have elevated tryptase and other masto symptoms they ruled it out. I think they don't know about mast cell related diseases, MCAD, but only deal with typical mastocytosis. Docs also say that elevated IgE (500-600) without true allergy is weird.
Yeah, I thought of this mechanism, that my mast cells may be degranulating because of some latent, mild infection. I've had lots of test, but, now that you mentioned it, I'm going to double check it, if something hasn't been omitted. When it comes to viruses I only had hiv, hbv, cmv and mono done, maybe I should check other. However, this hidden infection hypothesis doesn't work well, when taken into account that for the first couple of years I felt great in the autumn and winter and bad in spring and summer. BTW. My grandma also has elevated IgE, low grade fevers and post nasal drip for 4 years, it started after infection.
When it comes to meds I don't think there's much left. Regular antihistamines don't work for me. Ketotifen made me feel a bit better, but only for two weeks, then my body kind of accommodated and it stopped working. I double the dose and the same thing happened. I react badly to turmeric and quercetin due to histamine / salicylate intolerance.
Additionally, I found out that my B12 and folic acid are near the lower range and I try to supplement them, but only in small quantities due to the aforementioned intolerances. (There's much hype about vit. B protocols on some other forums and I want to try it out.)
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