mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

[ScottTriGuy]

I wonder if MD and ME/CFS and FIBRO could have similar pathologic functioning. What do you think about it?

It would not surprise me - but, fwiw, I do not have pain and I'm a rapamune responder.

Do you know of any ME researchers looking into this?


Tangentially, I have a suspected neuroendocrine tumour (NET) and have read that rapamycin is one of the treatments for the tumour.

Because NET's are slow growing, I wonder if rapamune has been inhibiting tumour growth for the last 2 years I've been taking it.

And I wonder if my ME symptoms are a manifestation of the tumour as exertion can trigger NET symptoms.

 

[XenForo]

Once been off rapamune for quite a while. Been managing symptoms by handling stress less stressfully. Working 6 hours a day, down from 8 or more on rapamune. Seems that for me, stress is the big driver of symptoms. I wonder if rapamune helps to lessen some stress response.

 

[Avena]

Keeping track of those taking rapamycin...

XenForo - major response
eljefe19 - major response
made_lman / Dallas patient #1 - major response
Ken Lassen blog reader - major response

Dallas patient #2 - positive response of unknown degree
Dallas patient #3 - positive response of unknown degree
Dallas patient #4 - positive response of unknown degree
Dallas patient #5 - positive response of unknown degree

perovyscus - discontinued

nandixon - pending
Hip - pending

steve4andrea - no response
Montoya Reddit patient - no response
BadPack - no response

Two years later... any updates? Does the Dallas Clinic still believe in Rapamune for ME?

Are you still responders, @eljefe19 @XenForo ?

 

[knackers323]

To those that have tried rapamune, what effect do you get from other macrolides?

I get a large benefit from other macrolides within a day

How damaging is rapamune on gut bacteria?

 

[XenForo]

Two years later... any updates?

Are you still responders,@XenForo ?

I am even better able to manage my MCAS via anti histamines, avoiding high histamine foods, and mindful ness exercises (which help immesurably). I have stopped the rapamune on the advice of my mountain view doc. (She is well and truly great, btw) She also referred me to anok gupta's amygdala retraining exercises, and I've found them to be extremely helpful. (I have to say, he seems totally full of shinanagins. However, it helps me out so much I don't really care about that any more.) So bottom line, no more rapamune for me. I don't need it, as I'm enjoying better health than I ever have, even though I'm almost 50 years old and I'm under lots of temporary stress atm.

I still have a few rapamune pills left, but I just never take them. I do like the thought of having them around as a last ditch support, even if I never end up taking them. This disease can be so #!*!#ing frustrating that every potential support is worth holding on to, like I say, even if I never end up using it.

Particularly stressful days still set me back - in bed the rest of the day, even, sometimes. However it's always just a half a day here, full day, there. Never is it more than that, certainly not months or more on end like it used to be.

In only going to update again here on the forum if things change for me again; So if you don't hear from me, things are still good.

 

[Avena]

Thank you for taking your time to respod, @XenForo - great to hear that you are doing well!

I am familiar with the Gupta programme, tried it years ago (did nothing for my symtoms).

 

[SlamDancin]

I know @eljefe19 and he no longer uses Rapamycin nor necessarily recommends it.

However, he says high dose Naltrexone is having an interesting and possibly positive effect.

 

[SlamDancin]

I actually have read some interesting papers where Rapamycin was protective against structural disorders like progressive scoliosis and other bone/connective tissue illnesses. I think it could be utilized by some pwme.

 

[Avena]

I actually have read some interesting papers where Rapamycin was protective against structural disorders like progressive scoliosis and other bone/connective tissue illnesses. I think it could be utilized by some pwme.

Promising Lupus trial published 2018.

 

[XenForo]

I know @eljefe19 and he no longer uses Rapamycin nor necessarily recommends it.

However, he says high dose Naltrexone is having an interesting and possibly positive effect.

That's interesting; Low Dose Naltrexone helps me; I've never tried High Dose Naltrexone.

 

[XenForo]

Any rapamune responders try NAC, with or without Rapamune? It sounds like NAC is also a mtor inhibitor: https://www.ncbi.nlm.nih.gov/pubmed/22549432. (N-acetylcysteine reduces disease activity by blocking mammalian target of rapamycin in T cells from systemic lupus erythematosus patients: a randomized, double-blind, placebo-controlled trial)
and:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3411859/. (N-ACETYLCYSTEINE REDUCES DISEASE ACTIVITY BY BLOCKING MTOR IN T CELLS OF LUPUS PATIENTS)

Rapamune has so many effects that it's had to know which one or ones are the helpful ones. There's antifungal, there's the effects on t-cells I think, and maybe B cells ( I forget ).

 

[ScottTriGuy]

Any rapamune responders try NAC, with or without Rapamune?

I was taking NAC long before I started Rapamune.

Rapamune has so many effects that it's had to know which one or ones are the helpful ones. There's antifungal, there's the effects on t-cells I think, and maybe B cells ( I forget ).

Yep, it impacts many things, hard to know what its helping in the body.

 

[bread.]

what is the last on rapamune?

 

[bread.]

Rapamune maybe works for Leigh Syndrome, the number 1 differential diagnosis for leigh syndrome is the fatal Pyruvate-Dehydrogenase-Deficiency in young childs. I think it is somewhat established that that there pdh deficiency in me/cfs.

 

[XenForo]

Rapamune maybe works for Leigh Syndrome, the number 1 differential diagnosis for leigh syndrome is the fatal Pyruvate-Dehydrogenase-Deficiency in young childs. I think it is somewhat established that that there pdh deficiency in me/cfs.

I did a quick google search, but didn't see a connection between rapamune and Leigh Syndrome. Are you thinking of something specific, or speculating? (nothing wrong with speculation, of course

 

[bread.]

I did a quick google search, but didn't see a connection between rapamune and Leigh Syndrome. Are you thinking of something specific, or speculating? (nothing wrong with speculation, of course

https://mitochondrialdiseasenews.co...-mitochondrial-diseases-case-series-suggests/

 

[made_lman]

Greetings. I was the first member to post about the effectiveness of Rapamune (Sirolimus), prescribed by a Dallas oncologist. Update: I had amazing improvement (not total disappearance though) of all symptoms within a month of taking Sirolimus. No negative side effects, but after abou 6-7 months I plateaued and declined again to baseline moderate- severe. Under the Dr’s care I increased dose twice over a 3 month period to absolutely no effect. So I stopped as I had eye surgery coming up and was concerned about infection. I am now in Michigan near Ann Arbor (know any doctors?) and will try this medication again at some point - but waiting for pandemic to calm down. This RX was undeniably the most effective remedy for me. I believe I am in the Immune over activation Subgroup, probably with some autoimmunity involved as I test positive consistently for SCL 40. But rheumatologist say symptoms not severe enough and could be cross reactivity with other auto antibodies. Ugh! Under the right care I am hoping to try other modulators and/or suppressors at some point. But not during this pandemic. In the meantime I never get ‘normal’ sick for the last 6 years, and I have all the classic symptoms of severe fatigue, PEM, some cognitive difficulties when crashed, and muscle pain. The horrible seizure like head crashes are significantly diminished now - a good sign perhaps of a slow recovery? Pacing helps prevent crashes. Just wanted to update this long thread about my use of Sirolimus.

 

[XenForo]

...Update: I had amazing improvement... but after abou 6-7 months I plateaued and declined again to baseline moderate- severe. Under the Dr’s care I increased dose twice over a 3 month period to absolutely no effect. So I stopped ...

Have you ever tried the on again off again dissing that seems to work Fort many of us, (including me?) It's weird, it seemed to "stop working" if dosed consistently, rather than pulsed or whatever it's called.

 

[made_lman]

I did not pulse but I know that is an option I should try when I test it again. Was happy to hear you are improved!

 

[XenForo]

I wonder if is rapamune responders would also respond to rituximab. They both help with rheumatoid arthritis. And doesn't rapamune attack b cells too?