mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

eljefe19

eljefe19

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XenForo said:
I tried some 500mg of ALA w/ the .5 mg Rapamune and I'd guess it helps me further (with the fatigue.)

I get a headache w/ Rapamune, and take Diamox 250 mg 2x/day and it goes away.

I'm still doing really really well. Completely out of bed all day long, out biking, gardening, lifting weights. I really hope I don't relapse
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How long did relief from Rapamune take?
I'm waiting for some to arrive and will start soon.
 
XenForo

XenForo

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eljefe19 said:
How long did relief from Rapamune take?
I'm waiting for some to arrive and will start soon.
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It was right away for me. Like maybe a half hour? Maybe an hour? I had gotten out of bed and and then took care of some really important stuff that I was unable to do for 2 months. Boom.

That Rapamune is an expensive drug.

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XenForo

XenForo

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I'm going to talk to my GP really soon about possibly going down to Dallas to see the Doc down there, unless this doc up here thinks he can wrap his head around it enough to provide guidence, bloodtests and a script, etc. (I think It's a really bad idea to take prescription meds without a doctor's oversight. I just did it because I was desperate. And it's so hard to find a good CFS doc who's not thousands of miles away.)
 
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XenForo

XenForo

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I forgot to mention that either the Rapamune or the Diamox helps with my otherwise intractable IBS-D. That's the trouble with taking two meds at once - I can't tell which is doing what. But I'm not willing to give up one of them just yet.
 
T

Tunguska

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nandixon said:
I don't think there's much question that mTORC1 being under-activated is the more likely situation. Some questions to ask though are:

How important is that? It may actually be more of a problem that Akt is inhibited, as @Tunguska has suggested.

Is mTORC1 activity being reduced for good reason and might it be helpful to reduce it even further?

Or, assuming that rapamycin is actually helpful in ME/CFS, is it having some other effect beyond mTORC1 inhibition, as @eljefe19 suggested?
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Thanks from me for clearing up the SIRT4 again. I'd misremember and the threads were huge, best I don't try to fill your shoes.

I wonder further that perhaps Akt provides the skeletal symptom + more immediate relief, and it has impacts on immune response, but mTorC1 (I know I write it wrong, it's prettier this way) should provide exclusive immune modulation effects one way or the other. Proliferation is predominantly from mTorC1 and nothing will match its contribution. Similarly, I was under the impression B cell treatment wouldn't give relief very fast - but I'm not best informed on this.

Then there's the distinction between getting relief specifically for the PEM vs other symptoms. Maybe this matters for the Akt vs mTorC1 question, maybe not. But I could imagine distinct role for mTorC1 in muscle PEM.

My own preoccupation with having sufficient mTorC1 over course of days/weeks/months, has much more to do with repair processes and longer-term de-/re-generation, than relief.

msf said:
Tunguska might be in the running too.
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lol that wasn't necessary. Traditionally I'm poor at this. It's that the Akt/mTorC1/mTorC2/FoxO1-3/AMPK axis is more intuitive than other pathways, because it frequently mirrors at the cell level what the organism is doing, quite well, and it ties in to some dietary concepts. Unlike methylation where you can't tell left from right. I just happened to read about this in the past, and it conveniently became relevant again.

XenForo said:
I tried some 500mg of ALA w/ the .5 mg Rapamune and I'd guess it helps me further (with the fatigue.)
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That was fast. I usually had to take higher doses (600mg+) of ALA than that. But I have no idea how it interacts with rapamycin. There's a study on rapamycin + AiCAR and it had unexpected effect on the pathways.

I forgot to point out in case people don't know, the mg amounts I mentioned to adreno were for Na-R-ALA which is for all intents and purposes (probably not exactly) twice as effective. But come to think of it, I need to check better the difference w.r.t. AMPK and Akt.

eljefe19 said:
That's amazing. I need relief and need something to hope in. Thanks.
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Sorry to hear that, I thought you were doing alright. I can't say I feel that way because I have too many things I could try, just not enough room to work with. (with the exception of one symptom)

XenForo said:
I forgot to mention that either the Rapamune or the Diamox helps with my otherwise intractable IBS-D. That's the trouble with taking two meds at once - I can't tell which is doing what. But I'm not willing to give up one of them just yet.
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I have bad IBS-D too. If you figure it out I would love to know.
 
S

Steve4Andrea

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What is the conventional or even the un-conventional opinion on the use of immune suppressants like Rapamune in conjunction with anti-viral drugs. Does the suppressant action also suppress the anti viral action of the drug?
 
halcyon

halcyon

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Steve4Andrea said:
What is the conventional or even the un-conventional opinion on the use of immune suppressants like Rapamune in conjunction with anti-viral drugs. Does the suppressant action also suppress the anti viral action of the drug?
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An interesting question and I was looking at this the other day. Rapamycin causes cell cycle arrest at G1. Activity of viruses such as enteroviruses are heavily dependent on cell cycle, and I thought I was on to something, but enteroviruses replicate very well in cells arrested at G1.
 
XenForo

XenForo

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Tunguska said:
I have bad IBS-D too. If you figure it out I would love to know.
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I would guess it's the Diamox (acetazolamide), just with the timing of when I started taking it and when the diarrhea started to clear up. And also Diamox is a diuretic, so I think? that helps with diarrhea? But like I say, I'm not sure.
 
K

knackers323

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XenForo said:
It was right away for me. Like maybe a half hour? Maybe an hour? I had gotten out of bed and and then took care of some really important stuff that I was unable to do for 2 months. Boom.

That Rapamune is an expensive drug.

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hi XenForo

have you ever taken any other macrolides, did they have an effect?

i had very good improvement on clarithromycin and azithromycin within a day. and back to hell within a day of stopping. so its unlikely it was due to them killing anything.

its known that macrolides have immunomodulatory effects but do you know if they effect mTOR?
 
XenForo

XenForo

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I cannot believe how well I've been doing. After lots of activity, I just need just a 15, 20 minute nap, then I'm good to go. That's new for me. Used to be once I got tired, I was done for the day, even if it was 9:00 am, and I'd have to go lie down for the rest of the day (very often.) I really hope this new trend continues; I'm going to be so so bummed if it ends.
 
Jesse2233

Jesse2233

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XenForo said:
I cannot believe how well I've been doing. After lots of activity, I just need just a 15, 20 minute nap, then I'm good to go. That's new for me. Used to be once I got tired, I was done for the day, even if it was 9:00 am, and I'd have to go lie down for the rest of the day (very often.) I really hope this new trend continues; I'm going to be so so bummed if it ends.
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Great news! Hope it continues :)

Has it helped other symptoms besides energy? Do you have autoimmune blood markers? Was your onset viral?
 
XenForo

XenForo

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Jesse2233 said:
...Has it helped other symptoms besides energy? Do you have autoimmune blood markers? Was your onset viral?
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Decision making is much much easier, mental fog has lifted quite a bit. I still have Raynaud's. Neuro mediated hypotension seems better, but not totally gone - I'm still wearing the compression stockings.

I haven't had AI tests yet, but plan to ask the docs about it next visits. I printed out the Encephalopathy Autoimmune Eval from Mayo, just to get the conversation started and see what they say.

The PA at Stanford Medical Clinic suspects it was viral onset from 1973 ish. Not confirmed.

Oh, and my wife says I'm loads easier to be around. So that's nice. Oh and also, I'm more social, and not as reserved.
 
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