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.
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@Alex_Barton please follow up on CFS and let us now how you are doing after a few months.
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You won’t really notice anything until you pass 3 mg, IMHO.
Jonas
#5
3mg daily for CFS? or weekly?
That’s interesting. And am I likely to feel something after a one x 3mg dose, or would I have to take 3mgs for a few weeks before noticing anything? Thanks
Big thanks for sharing your journey, Alex! I’m trying to figure out the CFS dose regime that is used to treat this. What made you decide to go with 3mg/weekly?
Here is a quite nice overview of other general dose regimes and treatments. Would be nice to get ME/CFS there as an off label dose regime.
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With Rapamycin, you may experience effects immediately, it may take a few weeks, or you may not notice anything.
For me, I noticed after I started 3 mg.
My first dose was 6mg. I got a canker sore.
I would be interested to hear what you find too. Were you “officially” diagnosed with CFS? I ask because I finally got to see a CFS specialist at Stanford. After going thru some questioning and testing we concluded that I am suffering from fatigue but not specifically CFS. Earlier I had a bout of Polymyalgia rheumatica (PMR) another autoimmune disease.
Though the doctor didn’t think I had CFS per se, it was clear there was some kind of history now of autoimmune / inflammatory tissue for me. She asked if I wanted to try an “off label” use of a medication that they were finding helped with inflammation of the brain that could cause fatigue. It’s a micro dose of Naltrexone! (She didn’t offer Rapamycin even though I asked).
It turns out that similar to how Rapamycin has an almost exactly opposite impact when done at low dose vs high dose, Naltrexone has a very different effect when used at micro dose levels. At normal levels it binds and blocks opioid receptors. At micro dose levels it has an anti-inflammatory effect and can reduce some chronic pain and fatigue. The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain
I’ve been taking it for about a month now. Fatigue is so subjective. I know when I am having it, but when I’m not so fatigued I can forget what being fatigued is like. That being said. I do feel like my level of fatigue and “brain fog” has been reduced. I am able to do concentrated work at levels I haven’t been able to do for a long time. Is it placebo effect? I can’t be sure. But it does seem like I’m in a much better condition.
I still want to try Rapamycin though if I can ever find the right doctor setup to do it with…
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One thing about the Low Dose Naltrexone that I was warned about and it seems true. Much more intense dreams. I have not found that uncomfortable. I actually been liking that. They have not been disturbing and in general have been positive. People also complain of headaches but I have not had anything bad.
Here’s another interesting article Low-dose naltrexone as a treatment for chronic fatigue syndrome
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Since taking supplements, I have forgotten what being fatigued feels like. It seems like I am either “ON” (full of energy) or “OFF” (time to sleep).
Of course, there is the euphoric fatigue I get from Rapamycin, but at lower doses, that becomes less fatiguing.
KarlT
#14
Is there data showing Rapa as treatment for CFS?
I think it started to become interesting to people due to this anecdotal account: Chronic Fatigue Syndrome Put Into Remission By Rapamycin
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The article, as mentioned by RapAdmin, first got my interest. A few people with CFS have reported benefits. And Dr Alan Green apparently prescribes for CFS. That’s all I know.
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Just stumbled into this paper - perhaps of interest:
mTOR activation is a biomarker and a central pathway to autoimmune disorders, cancer, obesity, and aging
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Luckily I no longer have PMR after a year of taking Prednisone. If I had a relapse I would try Rapamycin instead of going back on to Prednisone.
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Hello, Alex! I thought I’d share my Fribromyalgia/CFS story with you since I’m also taking Rapamycin. I’ll be 70 in August, and I started 5mg Rapacan by Biocon on March 29, 2023…so a full three months now. I had no issues at 5mg for 8 weeks so then increased it to 7mg. I also take it with a grapefruit supplement, 1 tablespoon of virgin olive oil and have recently added metformin 4 weeks ago. I take it weekly on Thursdays around noon.
Regarding Fibro/CFS, I contracted it in May of 2007 after a Chiari Decompression surgery, which as you know a neurological trauma can cause it’s onset. I struggled with it for many months trying to get it under control for a followup surgery I needed 7 months later. Glutathione IVs got it under control, and I was able to undergo the second unrelated surgery. Since 2007, I’ve continued Glutathione IVs every 1-3 months, then 2 years ago I added NAD+ injections, twice a week. Those injections allowed me to lower the number of IVs without lessening my ATP levels.
Unfortunately, my Internist can no longer get the compounded injections so I have been without; however, the timing aligns with my beginning Rapamycin. To my delight, I have not needed to get a Glutathione IV for 5 months and feel more strength and energy than I have in many years. I attribute it to the Rapamycin because at this point, I normally would’ve needed at least 2 IVs to continue functioning without the weakness which I’m sure you’re quite familiar.
Good luck to you on your Rapa Journey!
If you have any questions, you can email me at saracasper71@gmail.com
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I thought I’d jump in here, since I also have Fibro/CFS, as to why I decided to start on 5mg weekly initially for longevity, but as I related to Alex a few minutes ago, I’ve experienced quite positive results with my Fibro/CFS. After doing a little research and seeing the doses Dr. Matt Kaeberlain and Dr. Alan Green began with, I decided to follow them…as well as my dog.
As an aside, I was first introduced to Rapamycin when I was able to get my Doberman accepted into the REPAIR study at Texas A&M being conducted by their Chief cardiologist Dr. Sonya Gordon. Before applying for the study, I did a little research about Rapamycin being used in conjunction with the DCM medication Vetmedin (pimobendan). That’s how I came to learn of its longevity application, which in fact is also being studied at A&M in their TRIAD study which Dr. Matt Kaeberlein began at several universities.
My 88-pound male Doberman takes 9.6mg of Rapamycin every Friday at 7:00 at which time we also take his respiration. The study is a 6-month pre-clinical one so all participants are getting the study drug which will also be provided to them for their lifetimes. He completes it in 2 weeks and has done wonderfully. Every 2 months, I take him in for a full work up, which includes an echocardiogram, EKG, full panels of lab work, urinalysis, and a 24-hour holter monitoring which I do from home. His cholesterol and triglycerides have remained in the normal range.
The instructions were explicit about taking the full dose on the same day and at the same time. I randomly decided that if my 88-pound dog can take 9.6mg weekly with absolutely nothing but positive results, I could begin with 5mg weekly and now 7mg weekly, which is in alignment with Dr. Kaeberlein’s and Dr. Alan Green’s initial dosages. I know they’ve both changed their dosing schedules, but for now, I’ll just keep following in my dog’s 
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