Hi, I’ve been rx’d 2mg, twice weekly for mecfs and Dysautonomia. The dosing is intended to suppress mtor consistently with autoimmune issues in mind. Doc advised starting with 1 mg twice weekly. I’ve only taken 3 doses of 1mg and am utterly exhausted, unable to function even days after the dose. I have a few inklings of positive improvements, too, but the severe fatigue has me worried. Is this side effect likely to ease in time or am I risking making myself worse? Any guidance for someone with mecfs and this type of dosing?
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How much vitamin d do you take?
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Hi, and welcome to the forums here. I am not sure if we have other MECFS people here. If there are i hope they will respond.
If you don’t get the response you are looking for i recommend the Facebook rapamycin forum. I have seen a number of MECFS people there sharing information.
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The fatigue will go away. For me after around the 3rd or 4th dose but maybe your body is more damaged and needs more time to heal
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Only very recently I’ve started to take D, 5000ish mgs/ day. What is the connection between rapamycin and D? Thank you !
Thank you, I have wondered if my body needs to sleep to allow healing. Are you speculating or is that a known thing? I haven’t found many anecdotes about severe fatigue wearing off, but I sure hope you’re right.
I sleep too much also during a crash … so it’s hard to know the difference. When is sleep healing and when is sleep hibernation- the body giving up for lack of reserves? I had a huge crash a few months ago and am just getting back to upright. So it’s concerning and inconvenient how much the rapa has knocked me back, I’m in bed again most of the time and sleeping hard during daylight hours as if drugged, even 2 days post rapa dose of 1 mg. If healing happens during that time, it’s a good thing and easy to persist!
Positives I’ve noticed: some oil on my face, as a younger person would have and some dream recall, which is usually absent for me.
At this point I think I will keep up the 1 mg dose and only increase to 2 if the fatigue improves. You think for most people the fatigue improves after a few weeks?
I dont think there is much of a connection
By the way… Do a search on Our forums for “me/cfs” and you will find a number of past conversations about it
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Hi, @Rapa4mecfs!
I found this website after reading about Jeremy Waletzky’s experience treating his MECFS with rapamycin. I’ve had MECFS since October 2018. I started rapamycin in October 2022 at 6mg/week. Sadly, I didn’t have the incredible improvement that Jeremy Waletzky had.
I’ve been experimenting (with full support of my MECFS literate doctor) with different doses/timing. In short, I worked up over a couple of months to 12mg/week and then started doing 24mg every other week (all while monitoring blood sugar with a CGM and getting routine basic safety labs). The first couple of days after I take 24mg I definitely feel a bit more run down. HOWEVER, “run down” for me is because rapamycin messes with my sleep (even at lower doses). Sort of like drinking a lot of caffeine right before bed. And, at ~25-75% through the 2 week course I feel much better than my baseline. At 75-100% through the course I’m back to my baseline. Of particular note, since I’ve started rapamycin, my overall “battery level” is improved. I’m not cured, but the rapamycin is definitely doing something. The only other medication or supplement I’ve tried that’s had this much of an impact is high dose B1. (I do 100mg injections of that twice a week.)
The other significant improvement I’ve had is that my blood pressure, which used to be in the 90-100/60-70 range (and then often got to 130/90 after I got MECFS) is now back to normal. I’ve got consistent stats on my blood pressure over the last four years, and notes on when I tried various things, and the blood pressure improvement seems to be a direct result of the rapamycin.
A thing my doctor and I are considering trying next is a lower dose 2x a week (e.g., 3mg 2x a week) just to see what changes. I’d encourage you to try spreading your dose out. Also, consider whether trying a larger dose but less often is an option.
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I think Rapamycin messes up with melatonin production. There are papers which say that autophagy disrupts circadian proteins.
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Thanks for sharing your experience. It’s really helpful to learn from others with similar conditions. My first 3 doses (1mg *2 per week) really knocked me back. Two days after dose 4 I came back to life with a miraculous improvement in mental and physical energy. I got hit by a virus after dose 6 and that really took the wind out of my sails. I was very sick, sleeping 15 hrs/day for two full weeks. I skipped doses during the virus. It’s interesting to note I have the kind of immune dysfunction that normally wards off all viruses so this bug was a rare thing for me. I resumed 1 mg rapamycin 2 days ago and am cautiously optimistic. It’s really helping me so much, now if I can only limit future viruses. You might post about your experience on Reddit, the rapamycin community and also r/CFS. Your story can help others! Thanks again for chiming in here.
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Have you tried senolytics like Dasatinib yet?
Curious, how did you acquire b1 by injection? Tia!
No, haven’t heard of it. How do you think it would help?
First I used VitaStir.com (fill out a form, Dr. review, they mail you supplies) but their prices are quite high. B1 shots are OTC in Canada so I switched to ordering from a Canadian pharmacy that also sells OTC stuff - no issues paying with US credit card.
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B1 shots are OTC in Canada !? Thats shocking considering all B1 injections in the states come with an anaphylaxis warning. I would just use benfotiamine or allithiamine to raise thiamine blood levels.
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Thanks for sharing this info. How has the injectable b1 helped you?
If you have it from long Covid, you should look into Sofosbuvir and velpatasvir. It’s the only thing I’ve seen cure long Covid. The problem is the price in the USA. You’ll have to look overseas.
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