New user MECFS, crippling fatigue, pls help

Also, you are you doing these days, @Rapa4mecfs ?

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I figured I’d post this here. I have CFS but its technically IBD-F (fatigue from Crohns disease). I noticed NO improvements at 5mg per week, but I went up to about 15mg/week and started to notice an overall improvement. Then I took a break due to surgery, and about 3 weeks after the break, I had a horrible relapse of both Crohns and fatigue. So I’ve started back on the 15mg/week and wala… I feel better again. It took a few weeks for it to work… but it seems legit.

As a side note… I’ve previously tried everything under the sun, and the only thing that ever reliably helped the fatigue was immunosuppressive doses of corticosteroids.

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Hello, I am slow to see this message! The rapamycin felt a miracle but only briefly. I caught a virus with it and after that, never experienced the benefits again. I tinkered with dose and timing for close to 6 months, at which point I tested insanely high on my CRP levels. I can’t make sense that the rapa should raise CRP but the levels fell after I stopped it. My next experiment was using nicotine patches and that has given me more benefit than any intervention or supplement I have tried in 20 years. The patches are helping so many people with me/cfs, long covid, and v injuries, working miracles for some.
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CRP is (in part) a response to infection. Hence Rapamycin would probably increase CRP whilst infected. My own CRP is now back to normal at unmeasurably low (<0.15mg/L). On the other hand I only take Rapamycin every 3-4 weeks.

That was the confusing thing, mine never goes above 2 but when measured many months into rapamycin, with NO indications or symptoms of any type of infection it was above 30! And I felt as fine then as I ever do. Very strange! I thought perhaps the rapamycin was pushing my body to attempt repairs or extend more cellular / mitochondrial energy than I could spare?

The problem with CRP is it moves around a lot. Hence if you really want to know what is happening you need to measure quite frequently.

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