IVIG (immunoglobulin G) for POTS

[LTCBL]

Has anyone been treated with IVIG ( immunoglobulin via IV) for POTS?  There's a (blood) test processed in Germany by Cell Trend that looks for auto-antibody markers to determine if IVIG might be helpful to you. This will help your area POTS MD in administering IVIG.  Research was reported by Dr. David Kem, Univ of OK and OK VA.

LTC Bill

[corina]

Hi bleon, wanted to let you know that I have moved your topic on IVIG from chit-chat to Dysautonomia Discussion forum! Chit chat in general is meant for off topic conversation with friends and isn't read by everyone. Hope you will get some answers!

[p8d]

I sent my blood off to them a couple of weeks ago.  UPS wouldn’t touch it and the local FedEx offices were a disaster to deal with.  The sample got held up at customs for days because of paperwork that no one told me I would need.  The international people at FedEx were great and the sample eventually made it to the lab.  I am waiting to see if the serum is viable after the delay for testing and results.  This was all after finding that the lab at the Drs office would not physically hand me back the tube for shipping so I had to scramble to find a lab (local medical college-affiliated) that would.  If you decide to go this route be sure you have everything sorted out beforehand.  I have all the customs forms if anyone wants them.  I am hoping that everything works out so I can try IVIG.

[Guest ANCY]

I am having IVIG next week, 3rd time having a mega dose. Insurance doesn't agree with it's usefulness as a treatment though so not sure if we will be able to continue treatment. I see a massive benefit from it for about 3 months. I do get aseptic meningitis from IVIG but it wears off and then I get to reap the benefits for 3 months.