@Gingergrrl, I never had ANY skin issues until the 2nd summer into this illness. Everything from throat closing up to unexplained weird rashes and then the development of dermatographia when scratching itchy skin. I started the zantac/zyrtec (Reactine) protocol to no avail so then switched to loratidine (Claritin) but regardless, I still had weird skin issues occur which continue to this day off and on again.
Last year I had the tryptase done by an immunologist (who is knowledgeable in EDS/dysautonomia) as well as regular allergy skin prick allergy testing done. He said I was allergic to NOTHING (bizarre as I react to seasonal pollens/grasses) and that my tryptase level was low so therefore I didn't have mastocytosis. I think I've read that you have to be reacting at the time of the t-test or your levels will be low so not sure how reliable this test is. Regardless, his opinion is that MCAS is a new label for "weird crap" (as someone said, like ME) and that its just a catch-all dx . But how would he explain this http://williams.medicine.wisc.edu/mast_cell_activation_2011.pdf
I realize you need to do the detective work b/c of the possibility of the culprit being in your meds. I feel bad for you b/c I know that it can consume so much of your limited energy. As for me, I've given up worrying about it b/c my life became one of continual and constant detective work regarding the strange skin issues, PEM and dislocations. I was becoming so frustrated and was afraid my roadblocks to wellness
were going to put me into a depression. Now I make sure there is always benadryl (works quickly for me) in the house b/c my doctor does not want me to have an epi pen. She claims it may not work when I need it... or something strange like that. How she feels about CFS/ME is a whole other thread. Wow, wish I had your doctor who seems to be a person who cares and helps work with you and your issues.You are very fortunate in that regard
Feel better.
Last year I had the tryptase done by an immunologist (who is knowledgeable in EDS/dysautonomia) as well as regular allergy skin prick allergy testing done. He said I was allergic to NOTHING (bizarre as I react to seasonal pollens/grasses) and that my tryptase level was low so therefore I didn't have mastocytosis. I think I've read that you have to be reacting at the time of the t-test or your levels will be low so not sure how reliable this test is. Regardless, his opinion is that MCAS is a new label for "weird crap" (as someone said, like ME) and that its just a catch-all dx . But how would he explain this http://williams.medicine.wisc.edu/mast_cell_activation_2011.pdf
I realize you need to do the detective work b/c of the possibility of the culprit being in your meds. I feel bad for you b/c I know that it can consume so much of your limited energy. As for me, I've given up worrying about it b/c my life became one of continual and constant detective work regarding the strange skin issues, PEM and dislocations. I was becoming so frustrated and was afraid my roadblocks to wellness
were going to put me into a depression. Now I make sure there is always benadryl (works quickly for me) in the house b/c my doctor does not want me to have an epi pen. She claims it may not work when I need it... or something strange like that. How she feels about CFS/ME is a whole other thread. Wow, wish I had your doctor who seems to be a person who cares and helps work with you and your issues.You are very fortunate in that regard Feel better.
