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POTLUCK

Question About Jaha Autoimmunity Study

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Thanks, Dops. I'm just overly curious!!

Can anyone guess what antibody tests Dops may have had? I'm not sure what is being tested these days.

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Wow, rereading this thread, and we still don't have but minimal new information 5 years later.  And, still no new treatments.

Does anyone know a good POTS doctor that focuses on the autoimmune component and actually does something about it???

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My Drs understand the autoimmune connection/Cell-trend lab and fought my insurance company to approve IVIG/SCIG.  I see the Drs at the Aurora Autonomic Center in Grafton, WI.  I had all the tests that Mayo/Vandy do for underlying cause after my first appointment, all negative.  A subsequent ANA came up positive which led to a UCTD diagnosis and I had a positive to anti alpha 1 adrenergic antibodies on the Celltrend test which led  to the positive review by the insurance company.  I have been on SCIG since November.  I think it’s helping with some things but no effect yet on BP/HR.  I was told it will take years for the nerves to regrow because they grow so slowly.  So, yes, there are some places that believe this and treat accordingly IF you have the test results to show it. Dr Schofield wrote up a nice piece on how IVIG is helping last year but I don’t have the citation right now.  She did a great study and my Drs used that in my case with the insurance company.

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Thanks p8d!  That sounds wonderful that your doctors advocated for you!  I will keep my eyes and ears open to people mentioning if they have doctors that do the same, AND are closer to me(I live in the deep South).  All the good places are a long way away.

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