BeenThere Posted June 25, 2018 Report Share Posted June 25, 2018 (edited) If you are o the East Coast are you aware of the relatively new Lyme and Pans Treatment Center in Cohasset MA? I don't know anyone who has gone there but it seems comprehensive and they will work with adults unlike the other major Pandas Centers. Has your son had comprehensive testing for Lyme and other co-infections? When we finally got the Igenix testing in Jan '18 I was shocked at how many co-infections my son had. He was asymptomatic for them. He had systemic yeast, mycoplasma, babesia, bartonella, and strep titers still at 500 after 12 months on abx - starting at 950, eventually down to 300, now back up again. He is on 3 abx now (zithro, alinia, keflex), but that has varied over the last 4 months, and many supplements to attack the lyme co-infections. His blood tests are getting better. We hope to clear out all infections and get to IVIG and hope for success. My son was desperate 5 months ago: had to withdraw from school. He is feeling better today although we still have a long way to go. I have to say the neuro-psychiatric symptoms for all the above co-infections are pretty much the same as for Pandas/Pans. We aren't sure whether his symptoms actually derived from Pandas or everything else or a combination. Also, the die-off caused by treating lyme and babesia is really rough. He was in a very dark place - we were worried to leave him alone. He is better enough today to go and take a couple of classes at school and try to get his life back. He is still treating the Lyme and prophylactic abx for strep. He follows a pretty strict diet for Lyme and candida - mainly paleo. We think this has contributed to his ability to eradiicate the yeast and reduce the lyme. He still has babesia IGM at 40 so still work to do. I would get the tests for co-infections. Either rule them out or start working to eradicate them as they are immune-suppressors or can be Pans triggers - as I understand it. Edited June 26, 2018 by beenthere added detail Link to comment Share on other sites More sharing options...
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