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Okay so i'm super confused. I thought mTOR was believed to be under-activated in ME/CFS patients and from memory Davis said in his video NOT to inhibit it...but according to this, inhibiting mTOR does the following:
I realise that the context is different (Leukemic cells), but isn't this what we want and perhaps why Rapamune/Sirolimus helps?
Or the symptoms of this disease aren't at all caused by metabolic issues.So either rapamycin must be doing something else that beneficially offsets that seeming disaster, or diversion of pyruvate away from the mitochondria is actually beneficial in ME/CFS.
Argh. I saw my GP and they advise against taking an immunosuppressant. I'm going to go off the Rapamune, and try a few less risky treatments recommended by my GP. No fun, but sounds like it might be the best course for me for now I'm not looking forward to the soon-to-come crash. Boo. Hiss.
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Risk of cancer. It does make sense to me to exhaust other, less risky, options first. I don't have other obvious autoimmune issues going on, that we know of.
Maybe Rapamune's effect on B cells outweighs any metabolic impairment. In other words perhaps it's diminishing problems upstream and encouraging systemic improvement
Pretty notable risk of Lymphoma seems a legitimate concern: 1.1%(24months) to 3.2%(36months) on 5mg and .7%(24months) to 1.8%(36months) on 2mg with .8% (36month) placebo.He's your doctor, but that's seems alarmist to me. Do you have known infections or whatever? In your scihub paper for SLE they were taking 2mg rap/day nonstop for up to 2 years plus varying prednisone.
I haven't heard a good reason (except price) why you couldn't cycle Rap on weeks you need it, if nothing else (can't really say "days" because half-life covers a couple). I'm not taking Rap, but if it was cheap that's what I'd be trying, and just until someone figures out if it has exclusive disease-modifying effects or not.
Pretty notable risk of Lymphoma seems a legitimate concern: 1.1%(24months) to 3.2%(36months) on 5mg and .7%(24months) to 1.8%(36months) on 2mg with .8% (36month) placebo.
Those numbers are high and seem to increase significantly with time. That's a big black mark over this drug as long term treatment. Still, even if it works THAT alone would be a big finding. The good news is lower dosage is less risk, so maybe 1mg would be doable. But if the risk increased over time like 5mg and 2mg it would still be sketchy past a few years.
Pretty notable risk of Lymphoma seems a legitimate concern: 1.1%(24months) to 3.2%(36months) on 5mg and .7%(24months) to 1.8%(36months) on 2mg with .8% (36month) placebo.
Those numbers are high and seem to increase significantly with time. That's a big black mark over this drug as long term treatment. Still, even if it works THAT alone would be a big finding. The good news is lower dosage is less risk, so maybe 1mg would be doable. But if the risk increased over time like 5mg and 2mg it would still be sketchy past a few years.
Argh. I saw my GP and they advise against taking an immunosuppressant. I'm going to go off the Rapamune, and try a few less risky treatments recommended by my GP. No fun, but sounds like it might be the best course for me for now I'm not looking forward to the soon-to-come crash. Boo. Hiss.
sibo treatmentwhat else did they suggest?
Increasing mTorC1 is still central to everything I do, so unqualified that statement doesn't sit well with me. I haven't justified well (and there are parts of the story missing in my estimate), but Akt+/mTorC1+ and I believe Akt+/mTorC1- each have different valuable uses, but the former more. I'm speaking about normal skeletal/brain cells, and from this perspective the immune system is more a wildcard.So is the present consensus that it doesn't really matter whether a compound activates or inhibits mTOR, as long as Akt is activated?
This is my question too!!So is the present consensus that it doesn't really matter whether a compound activates or inhibits mTOR, as long as Akt is activated?