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mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

ScottTriGuy

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I've been on Rapamune since Nov.

It is harder to induce PEM for me (only physical activity can induce it). And when I do its not as intense or as long.

I was trying to induce for MCAS testing, but couldn't get to the lab during my new shortened PEM window.

My chromogranin A and tryptase were in the normal range.

I will tell my doc that Rapamune may be impacting my MCAS results.
 

ScottTriGuy

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used_to_race

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Just a super quick update: I'm working well over 10 hours a day, at a very very stressful place that I hope to get away from in the next year. I'm also going through a divorce and also unrelated litigation. Stress is usually one of the triggers that brings me down very very fast. I do have down days, especially after very hard physical work over 3 hours at a stretch. But, overall, I am doing orders of magnitude better. Once in a while I do still reach for the rapamune, but it's rare nowadays. Mast Cell Activation Syndrome is what I have been diagnosed with and my doc says that Sirolimus helps fight mast cell activation as one of it's many activities. I'm still following this forum, because I'm curious if anyone else who is a rapamune responder has been diagnosed with MCAS as well.
This is so interesting. I've been getting periodic MCAS testing done through CCD and nothing has come up yet, but my impression is that Dr. Chheda thinks MCAS is much more common in ME/CFS than many of us would guess. In general I'm very different from the health profile you've mentioned here in terms of allergies, vomiting, etc. But I do get outbreaks of blotchy red skin sometimes and I have some gut issues that seem tightly coupled to my other symptoms. Dr. Chheda mentioned to me that she wants to do a clinical trial of Rapamune in the near future, and CCD is gearing up to do clinical trials of several other drugs as well.
 

Gingergrrl

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I'm sorry but Dr. Chheda only mentioned Rapamune because I mentioned that I had considered trying it. I also wonder what the other drugs are; perhaps they have plans to get involved with the Suramin stuff?
Thanks and no worries and I was just curious!
 

ScottTriGuy

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When I saw my doc on Friday (who prescribed Rapamune off label after I came to him with the research) he told me to listen to episode # 70 the STEM Talk podcast as it talks about mTOR, which I'm about to do:

https://www.ihmc.us/stemtalks/

ETA:
Today, Dr. David Sabatini joins us and gives us a first-hand account of how his research into rapamycin in 1994 as a graduate student led him to the discovery of mTOR, which we now know is a critical regulator of cellular growth.

Our interview with David delves into his continuing research into mTOR, which has led to promising opportunities for the development of new treatments for debilitating diseases such as cancer, diabetes and neurological disorders. He also discusses mTOR’s role in healthspan and lifespan.


David is a molecular cell biologist who, according to Reuters News Service, is on the short list for a Nobel Prize. David is on the faculty at MIT and heads up the Sabatini Lab at the Whitehead Institute.
 

voner

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@ScottTriGuy,


thanks for posting that podcast. The podcast really helps me start to understand mtor, etc.. and its role in metabolism etc. Dr. David Sabatini sure is a clear communicator and an expert on Mtor!

it appears there’s a lot of scientific interest in mTor and human longevity, but there many, many unknowns about mTors effects in different human tissues and evidence of long term detrimental effects of Rapamycin use.

for anyone interested in the dynamics of MTor, I recommend giving that podcast episode a try (@nandixon). They even get into longevity, ketosis, insulin, diet & exactly what’s known and NOT known about mtor signaling, etc. It is a brave new world out there.
 

ScottTriGuy

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It is a good listen.

I took particular note when he said continuous long term use was not good, and that pulsing would be best - however he didn't know yet how best to pulse.

Fwiw, I will be decreasing my daily 1mg use to every other day starting this week.
 

ScottTriGuy

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Based on what Sabatini said in the podcast about not taking Rapamune continuously, I am now only taking it Monday - Wed - Friday.

Immediately my ME symptoms intensified and my exertion tolerance decreased.

It occurred to me that Sabatini was speaking in the context of healthy people. I don't recall at any point him referring to the use of Rapamune by sick people.

I emailed Sabatini for clarification a few weeks ago, but have not had a response.

I am very tempted to resume once a day. Will discuss with my GP.
 

used_to_race

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How was your functioning without rapamune compared to daily rapamune and now "every other day" rapamune? Also, can you comment on its effect on your "immunological" type symptoms? I'd be particularly interested to know if it had any effect on things like sore throat, runny/stuffy nose, headaches, things of that nature.
 

XenForo

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Ugh, I'm doing crappy again, and Rapamune isn't helping me. I've switched my other meds quite a bit. I wonder if one of the added ones is causing a change. Does anyone know if magnesium affects rapamune's affect?
 

ScottTriGuy

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I've been taking magnesium the whole time, so I don't think it has inhibited Rapamune's effect for me.

Fwiw, I changed one of my HIV meds in November (to include Tenofovir) and I became hyperthyroid and have had to reduce the my thyroid medication (taken for hypothyroid symptoms).

I suspect Tenofovir knocked down my B cells (this is what Dr Carmen Scheibenbogen told me) and that has impacted (positively?) my thyroid. I suggested this to the endocrinologist and he just shrugged.

I am taking 1mg Rapamune daily. How much are you taking, and for how long? I wonder what would happen if you increased the dose for a short period to see if it helped?
 

pattismith

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@Hip, @pattismith

See my later post here. I had to reevaluate the mTOR/mTORC1 situation because of the new T-cell work by Mark Davis and also Maureen Hanson.
Rapamycin is helpful in Myotonic Dystrophy type 1 (MD1) mouse model, and AICAR as well (both AMPK/mTOR modulators).
see my new thread here.

MD are genetic sliceopathies, they modify the nuclear DNA expression and transcription for several proteins. It's not a muscle disease only, it's a multisystem disease (muscle, brain, autonomic nervous system, endocrine system…)
Symptoms look quite similar to ME/CFS+FIBRO in many cases.
I wonder if MD and ME/CFS and FIBRO could have similar pathologic functioning. What do you think about it?