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Long history with manageable PANS (first triggered by strep then flu and parvo). Did fairly well until September of 2013 with recurrent colds, coughs, other viruses, sinus infections. Since then DS12 flares have been more frequent, dramatic and debilitating with headache, eye pain, joint pain, flushing... New plan starting over - recently diagnosed with autoimmune encephalopathy (anti-adrenal antibodies and severe flare with documented acute cognitive dysfunction). Please tell me what you think of this plan? Now on Azith and Augmentin (and probiotic). Doctor wants to do 1 week steroid taper given continued nasal turbinate and bronchial inflammation but since DS is not flaring terribly right now I am hesitant. Ordered new rounds of bloodwork to test family for myco P. and strep - along with the usual suspects et cetera. Depending on lab results will consider moving to Igenex. Doc concerned about lyme and bartonella. Wants to additionally perform more in depth allergy testing given that our worst flares are always in the spring. The only positive test in past has been for dust mites. Also his IgE for the first time ever is above normal - before it was always below normal even though we thought we had allergy issues. Our house also tested with higher than normal count Aspergillus so mold is likely a key player. Once allergy and infectious triggers are addressed, possible IVIG. My questions: do I request MTHFR investigation as well? Is the above the proper order to "peel the onion?" I have lingering concerns about gut health and yeast overgrowth while on antibiotics and am not sure how to address. Doc said a probiotic is enough. Many thanks for all your help. This forum is so healing.
