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Please help. We are on our 2nd round with Pandas and now Lyme co-infections with my DS(23). Twelve years ago he responded beautifully to abx. This time he has not responded to abx or to one round of IVIG (no response at 8 weeks). He has treated yeast successfully, mycoplasma and H pylori successfully, no active strep or viruses, although ASOs still high 400s and Dnase B at 300. Babesia duncani at 40, and possibly some bartonella - although no symptoms for any lyme or co-infections. Physically he is the picture of health. His symptoms as an adult are invisible but still debilitating - extreme social anxiety and consistent depression. We are seriously interested in plasma exchange as a next step. It seems logical that cleaning his blood of antibodies and then re-training the immune system would alleviate his symptoms. We would love to hear some current experience with this. Who is doing plasma exchange? Our provider said she would do it if she could; apparently its almost impossible to get in California. If insurance will not pay - how much does it cost and can one get the contract rate? Does it matter that DS has primary diagnosis of autoimmune encephalitis? I would really like to hear some recent experiences with this? Most comments I see are from 6-8 years ago. Does this mean that no one is getting plasma? It is listed as a front line treatment for AE, which many or most of our kids seems to have as a diagnosis. We have to make a decision about next steps. DS is not getting any better. NO better on the path we are on. Is plasma exchange a good option - obviously knowing there are no guarantees. Thanks for any help.
