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The original was posted on /r/cfs by /u/shanmurp on 2025-01-29 00:54:26+00:00.
I am writing on behalf of my daughter who is very severe. Last February had colossal crash and has been unable to do anything except lie in bed. Needs full time care. When PEM crashes occur, cannot tolerate light, sound, movement. Can’t eat solid food.
She had some improvement this summer using Rapamyacin. Prozac also helped. Was able to sit up and eat food, able to talk/converse without problems. After a few months, the gains stopped and she crashed again.
The Prozac has been a PEM shielder, but she has had to go up 10 mg every so often and is now at the limit (60 mg—she is a small person).
Currently she is crashing with any small thing—even sipping a drink. Can’t tolerate light, sound, etc., again.
She has tried Valtrex for 6 mos., LDN, LDA, some peptides, all sorts of supplements….
Does anyone have ideas about the success of the mechanisms of the Rapamyacin (3mg a week)and Prozac; and if so, do you have any suggestions for medications that work in a similar way?
We would greatly appreciate your help.