Gingergrrl
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He's in Oklahoma. He discusses the drug starting around 33:00 in his recent talk at the Dysautonomia International conference.
I just watched this video of Dr. Kem and thank you so much for sharing the link. There were several very interesting parts (plus many parts that were way over my knowledge level)!
Someone in the audience asked him what he thinks causes autoimmune POTS and his initial response was that we still do not know but then he said two major things are the Epstein Barr Virus (EBV) which I had ten months prior to developing POTS and his second response is that it is "calcium mediated" which also pertains to me with the calcium autoantibody so I fit with both theories. Yeah for me .
Then someone asked him about IVIG and he said they were doing a 12 month study with autoimmune POTS patients with IVIG and in one patient who had improvement, her beta auto-abs dropped in one month and her alpha auto-abs dropped in four months. Sadly, they were using autoimmune dosing so I couldn't really compare it to me with the lower dosing. He also said that patients have had improvement with steroids, plasmapheresis and RTX. He said of course they cannot predict who will be the responders but that all of these have promise (I am paraphrasing and these are not his exact words). He said the problem is that IVIG is so expensive and insurance companies do not want to pay for it and sadly I see no way around this part.
I should be a slam-dunk case with all of these auto-antibodies but I don't think I will be.