New consumer MECFS, crippling fatigue, pls assist – rapamycin

Hello, I’ve been rx’d 2mg, twice weekly for mecfs and Dysautonomia. The dosing is meant to suppress mtor constantly with autoimmune points in thoughts. Doc suggested beginning with 1 mg twice weekly. I’ve solely taken 3 doses of 1mg and am completely exhausted, unable to perform even days after the dose. I’ve a couple of inklings of optimistic enhancements, too, however the extreme fatigue has me fearful. Is that this aspect impact more likely to ease in time or am I risking making myself worse? Any steering for somebody with mecfs and this sort of dosing?

How a lot vitamin d do you’re taking?

Hello, and welcome to the boards right here. I’m not positive if we’ve got different MECFS individuals right here. If there are i hope they’ll reply.

For those who don’t get the response you might be searching for i like to recommend the Fb rapamycin discussion board. I’ve seen quite a few MECFS individuals there sharing info.

The fatigue will go away. For me after across the third or 4th dose however possibly your physique is extra broken and desires extra time to heal

Solely very just lately I’ve began to take D, 5000ish mgs/ day. What’s the connection between rapamycin and D? Thanks !

Thanks, I’ve questioned if my physique must sleep to permit therapeutic. Are you speculating or is {that a} recognized factor? I haven’t discovered many anecdotes about extreme fatigue carrying off, however I positive hope you’re proper.

I sleep an excessive amount of additionally throughout a crash … so it’s exhausting to know the distinction. When is sleep therapeutic and when is sleep hibernation- the physique giving up for lack of reserves? I had an enormous crash a couple of months in the past and am simply getting again to upright. So it’s regarding and inconvenient how a lot the rapa has knocked me again, I’m in mattress once more more often than not and sleeping exhausting throughout sunlight hours as if drugged, even 2 days submit rapa dose of 1 mg. If therapeutic occurs throughout that point, it’s a superb factor and simple to persist!

Positives I’ve observed: some oil on my face, as a youthful particular person would have and a few dream recall, which is often absent for me.

At this level I believe I’ll sustain the 1 mg dose and solely enhance to 2 if the fatigue improves. You assume for most individuals the fatigue improves after a couple of weeks?