Rapamycin dose regime for ME/CFS?

Krister_Kauppi · 2022-10-01T07:29:37.454Z

Is there any information on rapamycin dose regime for ME/CFS? I know some here are taking rapamycin for ME/CFS. Can you share some information in the topic

I would like to include that dose regime information in the image below

Dose regimes treatments (4)940×788 53.5 KB

JeffSmith · 2023-03-01T03:57:38.933Z

Here’s a quote from Jeremy Waletzky: “I was unresponsive to everything until beginning rapamycin treatment, 6 mg once weekly in December 2021. I noticed an improvement in three weeks and by six weeks I was in remission” from this article:

Health Rising – 6 Jul 22

A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS - Health Rising

After ten years with chronic fatigue syndrome a retired doctor returns with health using Rapamycin.

Est. reading time: 8 minutes

I tried 6mg/week for six weeks (hoping for a remission of course) based on the above and had no such luck. With supervision, I increased the dosage (2mg at a time each week and then as the dosage got higher, switching to every 10 days, then every 14 days). Haven’t found a sweet spot yet.

Maxi · 2025-01-11T15:19:20.345Z

I have ME/CFS and Myositis. I just started Rapamycin 6 mg/week. I would love contacts to others.

Krister_Kauppi · 2025-01-11T18:24:34.990Z

I think there are some people here. I made a quick search in the forum and here are some threads

New here, a couple questions and is anyone trying it for chronic fatigue syndrome?

Hi, I’m female, 70 with long time CFS, and follow Cort Johnson’s blog Health Rising. A retired doc in 70’s said he was virtually cured of his fatigue taking rapamycin so I’m trying it. Started at just 1mg, then 3, 4 and now 5 last 3 weeks. Lately I’ve been slightly nauseas, has anyone else had this? No other side effects. I got mine from a place listed in a book I read by Ross Pelton - the anti aging store in the UK but when I received said it came from China and says Profound products on package. Does anyone else get it from them? I’m just finding this site and haven’t done what is says here, to read up etc, just read his book and started taking, and did hear of it from Peter Attia. Thanks for any advice.

Starting rapamycin

Hi. I’m 64, female with CFS. I have just started taking rapamycin. I took 1 mg the first week and 2mg the second week. Next week I will take 3mg and continue that weekly to see how I go. Fingers crossed it helps my CFS. So far no effects felt at all, either good or bad.

How does Rapamycin make you feel?

I have not yet taken Rapamycin but I am considering doing so. I am a 53 year old and I think I might have CFS and fibromyalgia but I do not have an official diagnosis. I often feel very tired and I get random pains which come and go in various parts of my body seemingly without any explanation. I also sometimes get nasty headaches. From your experiences, do any of you think that taking Rapamycin might aleviate some of what I have described above? If yes, how many days after starting to take it do you think I might notice a difference? Does Rapamycin give you a sense of wellbeing? Or are you just taking it in the faith that it is extending your life? Thank you very much.

Keep us updated on how things progress for you. I have heard that for some rapamycin works really well but not for all. The company AgelessRx has partnered up with Simmaron Research and they are conducting research around ME/CFS. One goal of their research is to try to find biomarkers that predict if rapamycin will work or not for a specific patient. The physician @szalzala, who is one of the founders of AgelessRx, may probably be able to give an update on the status of that research.

Here is a post about the research

https://x.com/RedefiningMECFS/status/1874159586682561010

Candleflower · 2025-01-11T19:15:51.266Z

Hi Maxi welcome to the forum it’s a great place to get info for all sorts of things and very generous, intelligent folks wanting to share their knowledge. I am here due to CFS after reading about the retired doc on Cort Johnson’s website, unfortunately it did absolutely nothing for me other than increase my glucose and lipids. It was suggested here to have them tested after 2 or 3 months as it’s a common side effect. Seems many folks take statins or metformin to counteract and I’d have been willing to do that if the rapa helped me but decided after about 8 months to go off. It’s certainly worth a try just get your blood work done.

Maxi · 2025-01-11T20:35:14.328Z

Thank you very much Krister !

Maxi · 2025-01-12T14:22:13.702Z

Dear Candleflower, thank you for the information. Sorry it didnt work !
What symptoms dou you have apart fatigue ? I have horrible muscle stiffness and pain.
It seems that dosing can vary a lot. What was your dosing during the 8 months ? Did you measure the rapa level in the blood ?
I have just started at 6 mg once weekly. I just joined this group and will search it properly once I discover the search function :-). Look forward to further exchange, Maxi

Maxi · 2025-01-12T14:31:00.406Z

Hello Jeff,
How are you doing since May 23 ?
I have ME/CFS, just joined this group and started Rapamycin:
Rapamycin dose regime for ME/CFS? - General - Rapamycin Longevity News
Best, Maxi

Candleflower · 2025-01-12T14:59:44.048Z

Hi Maxi I did 6mg a week, taking a month to build up to that. I didn’t check blood levels. I have muscle issues too but sounds as if yours are worse, although for past 2 years having very bad issue with leg muscle after a knee replacement and wonder if has to do with having fibromyalgia, just more prone to issues - who knows, but it’s the fatigue, general malaise and never knowing how I’ll feel that has most impacted me. Best of luck.