mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

Jesse2233

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Rapamune is an immune suppressing drug used in preventing the rejection of kidney transplants. It inhibits activation of T cells and B cells by reducing the production of IL-2 by suppressing the mTor pathway.

From the comments section of a Health Rising article

Marcia Adelman on March 8, 2017 at 4:54 pm

Thank you Cort for this excellent write-up on the video talk. Dr. Davis mentioned the use of mTOR Inhibitors in this latest video. I listened a few times to this section but could not discern if he was cautioning against the use of mTOR Inhibitors for ALL ME/CFS patients or just a subset that may have mTOR gene mutations. He said – “You don’t want to take something that inhibits mTOR…” I am surprised and dismayed about this statement and really would like additional clarification…because I just started taking Rapamune (Sirolimus) which is an mTOR inhibitor, about a month ago and have experienced SIGNIFICANT improvement in both physical and cognitive functionality. Nothing else changed in my regimen during this time.

The oncologist/hematologist who prescribed this drug has 4 other patients that are taking Rapamune and all have experienced the same improvement that I have. I don’t know if it will last but besides LDN, it is the only thing that has moved the needle for me. Anti-virals did nothing for me. I posted about about Rapamune in another thread (the guy with the Castleman’s disease) but want to keep with this thread because of Dr. Davis mention. Anything you or others can add would be appreciated. Or is there an email I can contact Ron or Linda Tannenbaum directly for clarification? Thanks
This is counterintuitive to the latest research. Perhaps Rapamune's immune suppressing effect outweighs its mTor inhibition.

Also this is the same drug that a doctor used to cure himself of Castleman's disease.

Has anyone ever tried Rapamumr or have any ideas on what this might mean?
 
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Interesting find, and totally expected IMO as our theories' seem to get totally flipped on their heads consistently. My totally uneducated and non scientific guess is that by disabling B cell and/or T cell activation that it's interrupting a feedback loop that involves B cells and/or T cells and mTOR. There was talk in one of the mTOR threads about this B cell dependent feedback loop involving mTOR but I can't remember which thread exactly. One thing I found was that Coxsackievirus B3 can infect B cells to produce IL-10 and through this mechanism the virus is able to persist. Perhaps these patients are feeling better from either B cell autoantibodies being tampered down or their latent viral co-infections are being treated by suppressing B cell activation. Then there's the whole T cell exhaustion theory that @halcyon has been researching. I'm tagging him for discussion here as well.

I gotta say, I'm not above trying anything for this disease, but mTOR inhibition is certainly one of the more treacherous roads to go down, based on what we think we know. 5 patients as you know is not a big sample size, but I don't like to discount anecdotal reports either. Any idea Jesse what the cost of Rapamune is?
 
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By the way guys, this is the study linking CVB3, IL-10 and B-cells.

$28 a pill sounds about right for most of the meds out there to treat CFS. I'll do some sleuthing for a cheaper source.

@Jonathan Edwards I'd like to get your opinion Professor on the above study. CVB3 is thought by some, Dr. Chia mainly, to be a causal factor in CFS. Assuming this a subset of patients, could this tie a potential causal factor of CFS together with B-cells, and explain some patient's success with Rituximab?
 

wastwater

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I like this,I always felt I could understand my condition as the side effects of IL-2 my only concern was do I need that much IL-2 is it doing something that's needed or is it a fault and ok to tamp it down
 
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So Rapamune is just straight up Rapamycin, the quintessential mTOR inhibitor. @Jesse2233 any thoughts of trying it? I sourced it on alldaychemist, $600 or so for 3 months. Do you have any sources related to it's action on B cells?
 

wastwater

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Think I saw on wiki it comes from a bacterium found on Easter island
Quite a few articles out there on this
 
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@Jesse2233

Found the following quote after skimming this lengthy paper;

Therefore, the profound effect on BCR-driven proliferation is unusual and highlights that rapamycin could be an effective approach for treatment of B cell-driven autoimmune diseases. Indeed, rapamycin reduces pathogenic antibody accumulation and ameliorates disease in mouse models of lupus (Warner et al., 1994; Lui et al., 2008)
 

ljimbo423

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Hmm my thought is that perhaps all mTor inhibitors and activators are not created equal, and maybe benefits and risks are more nuanced
This is purely anecdotal, but I have been taking berberine for about a week now, and Berberine is a mtor inhibitor. link I have worked my way up to 300mg a day and feel a big improvement in my health.

I am taking it for SIBO and I think that's where most of my benefits are coming from. If it is as they say, a mtor inhibitor, it hasn't done me any harm whatsoever, in fact it's been a great help. I have read the metabolomics study saying that mtor is already inhibited in cfs. So it don't really make a lot of sense to me, but it is really helping me a lot!
 
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It's just been 1 day, so I'm not sure if it's related, but I just started Rapamune (Sirolimus) and I feel much much much better. Finally spent most of the day out of bed. I'll try to update how I'm doing over time. If I don't, it's because Rapamune is working and I'm busy getting stuff done. haha.
 
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I don't want to get too excited, because I just started Famvir (replacing Valtrex) recently and I also felt great right away with the change to Famvir, but it didn't last more than a day and a half. That was dissappointing, and I'm not sure if Rapamune will be similar, although I feel better on the Rapamune than I did on the first day of Famvir. We'll see how it goes on Rapamune in the next few days.

EDIT: Day 2 now and it still seems to be working.
 
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