Bedbound long COVID ME/CFS patient becomes fit enough to play basketball after 6 weeks of rapamycin at 5 mg weekly

Hip

Senior Member
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This Reddit post details a long COVID ME/CFS patient who was bedbound and very ill for 2.5 years, becoming fit enough to play basketball with no PEM repercussions, after 6 weeks of rapamycin (sirolimus) at a dose of 5 mg once a week.

He starting thinking in terms of trying rapamycin on the basis that ME/CFS might be an autoimmune disease. He learnt that it was unlikely ME/CFS could involve B-cell/antibody autoimmunity, because this possibility has been well explored; but ME/CFS might involve T-cell autoimmunity, and to counter this, you can promote regulatory T cells (T-regs).

Rapamycin promotes T-reg expansion and functioning, so this is why he decided to try this drug.

After his success with rapamycin, he realised that the benefits may come from mechanisms other than the T-reg one.



In this comment, he explains why taking 5 mg once a week is better than taking lower doses daily:
While doing my research, I saw that rapamycin used to be administered at a lower dose daily. They changed to a whole weeks' worth once a week because they found that rapamycin acts on multiple pathways (notably mTOR complex 1 and 2), and inhibiting mTORc1 is good and inhibiting mTORc2 is bad (leads to more immunosuppressive effects). mTOR complex 2 is less effected by intermittent dosing but is more inhibited by continuous dosing. So they switched from daily low doses to taking a whole weeks' worth at once!



Drinking 250 ml of grapefruit juice can increase rapamycin blood levels by 3.5 times, so grapefruit juice allows you to take lower doses of rapamycin and get the same effect, which saves money. This is because grapefruit juice inhibits the liver enzyme CYP3A4 which metabolises rapamycin. Other CYP3A4 inhibitors include grape seed extract and green tea extract, clarithromycin and itraconazole. See this post.

The cheapest I have found rapamycin is from BuyPharma, with 1 mg x 10 costing $19.
 
Last edited:

sb4

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@sb4 - have you started taking Rapamycin? If so, how much, how often, for how long? And any results or side effects yet? Any info at all about your experience would be great!
So I originally took rapamycin like a year and half ago for a couple months once per week at 1mg but I ate a bunch of tinned grapefruit before each dose so it probably was higher.
At this time I also found a way to make ketosis work and stopped bromocriptine and nicotine gum.
I improved in this time enough to start exercising again though needless to say I wasn't sure what exactly caused it.
I stopped the rapamycin as it could prevent muscle growth and I was lifting.

Anyway these last 4 months but in particular last month or so I've spiraled down massively, so I did start it up again on my birthday October 21st at the same dosage as before though I skipped the last 2 dosages as I may have had a cold. I can't say if it's done anything this time as I've just been crashing down.

One thing I do notice is my gums feeling sore like the next day so I assume the medication is legit.
 
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