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Experiences with immunoadsorption, anyone?

Messages
12
Hi!


I am a Post-Covid ME/CFS patient with symptoms lasting nearly one year. Im moderate, 30% functional.

I am seriously considering undergoing repeated immunoadsorption in the next few months. I'll have to pay for it from my pocket in a private clinic and it'll cost me the better portion of my savings.

I would be very grateful to hear about your experiences if you had immunoadsorption.

Was it worth it?
Were there any side effects?
How long did it take to see improvement if you did?

Thank you in advance!
 
Messages
26
I asked my ME/CFS expert (Dr. Susan Levine) about this. She said she had numerous patients try it, especially those with long Covid. In general she said while many patients do get benefit from it, the effects are almost always short lived, sometimes only lasting a few days. This is because the bad antibodies pumping out of your bone marrow will keep happening, she explained. She said I can think of it on similar lines to IVIG, where you most likely would need to take it every month to maintain benefit.
 
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