Reply To: Cidp after Covid

I had the antibody test, months ago.
There concern for these other drugs is the myriad
of side effects and risks for every other infection
on earth, not just covid. Gabapentin, once i passed 200 mg, which is non therapeutic, I cant stay awake, lyrica has had no affect, is like a sugar pill for me.
Plasmapheresis, is inpatient, pic line, during the highest number of covids on nyc since last year, and a new starin.

I have manhattan docs, centers of excellence.
They feel its covid antibody inflammation, which
they don’t know enough about, that is the cause, and
there is no data, studies, enough cases to even guess
what to do responsibly. I am the only cidp,
covid pt. my doc has. I have googled it…NOTHING
I was thinking, regeneron,or remdesevere, as that is given to hinder the covid inflammatory response, specifically. Maybe that is still in me, as indicates in the antibody test.
Docs, hate to have suggestions made to them about drugs, or anything…too much ego, and they hate that they dont know, and since covid in nyc, I can sense the change in their attitude in seeing pts in full ppe, at these major hospitals, they r uncomfortable, hot, typing their own notes during visit so not to have another person in room like prior to covid doing chart notes, making them impatient.
The immune response is different now in me, or the ivig would still work..nothing else changed.

I appreciate your input, if you hear of anyone with my situation please let me know. This is making my life
no existent right now. Hands feet, pain unyielding.

Pammy