Also, you are you doing these days, @Rapa4mecfs ?
1 Like
hamtaro
#22
I figured I’d post this here. I have CFS but its technically IBD-F (fatigue from Crohns disease). I noticed NO improvements at 5mg per week, but I went up to about 15mg/week and started to notice an overall improvement. Then I took a break due to surgery, and about 3 weeks after the break, I had a horrible relapse of both Crohns and fatigue. So I’ve started back on the 15mg/week and wala… I feel better again. It took a few weeks for it to work… but it seems legit.
As a side note… I’ve previously tried everything under the sun, and the only thing that ever reliably helped the fatigue was immunosuppressive doses of corticosteroids.
3 Likes
Hello, I am slow to see this message! The rapamycin felt a miracle but only briefly. I caught a virus with it and after that, never experienced the benefits again. I tinkered with dose and timing for close to 6 months, at which point I tested insanely high on my CRP levels. I can’t make sense that the rapa should raise CRP but the levels fell after I stopped it. My next experiment was using nicotine patches and that has given me more benefit than any intervention or supplement I have tried in 20 years. The patches are helping so many people with me/cfs, long covid, and v injuries, working miracles for some.
Those interested to learn more @TheNicotineTest | Twitter, Instagram, Facebook | Linktree
1 Like
CRP is (in part) a response to infection. Hence Rapamycin would probably increase CRP whilst infected. My own CRP is now back to normal at unmeasurably low (<0.15mg/L). On the other hand I only take Rapamycin every 3-4 weeks.
That was the confusing thing, mine never goes above 2 but when measured many months into rapamycin, with NO indications or symptoms of any type of infection it was above 30! And I felt as fine then as I ever do. Very strange! I thought perhaps the rapamycin was pushing my body to attempt repairs or extend more cellular / mitochondrial energy than I could spare?
The problem with CRP is it moves around a lot. Hence if you really want to know what is happening you need to measure quite frequently.
1 Like
I’ve tried the nicotine patches and most everything else. I’m 71 and so discouraged as have been in bed so much lately and feel like I’m sick which sometimes happens. Other times I feel fine but so tired it’s as if I’ve been drugged. I wish someone could figure this out. How are you doing now? It’s been awhile.
hamtaro
#28
There is work towards an ‘at home’ CRP monitor. Dr. Younger mentioned this in his recent video.
This would theoretically allow you to closely monitor any diet/lifestyle affects on CRP.
It’s definitely something I’m looking forward to.
2 Likes
Because CRP responds also to infection people need to be careful with it as a metric.
Thanks. It was interesting to hear that 0.3 CRP is “normal healthy adult” rather than outstanding. It was also interesting to see how fatigue and CRP track together. I assume he is excluding temporary illnesses like a cold, so this relates to chronic fatigue. Perhaps the effect is related to high amount energy being used by the immune system to do its thing (high inflammation) leaving less energy available or brain signaling for conservation of energy (a person feels as fatigue).
It depends whether measured in mg/dL or mg/L
hamtaro
#32
Yes, I was also shocked at the 0.3 CRP being considered normal. He’s referring to high sensitivity only. Mine is typically somewhere between 1.5 and 3, but that’s more common with people with autoimmune diseases.
High CRP indicates inflammation ‘somewhere’ in the body. By itself, that isn’t too helpful. That could be from infections, repeatedly injuries, smoking, heart issues, excess adipose tissue, excess cortisol.
But, using ‘changes’ in CRP, may help point the way to better lifestyle decisions for those with ME/CFS. That’s the real hope here.
The theory is that people with ME/CFS tend to be ‘hyper-sensitive’ to inflammation cues/signals/patterns in the brain. So although everyone gets occasional signals of inflammation in their brain, PWME are overly aggressive with triggering the defense mechanism which causes us to feel awful/fatigued.
So long story short: if we have an increase in CRP, although we don’t know exactly where the inflammation source is, its possible that the brain is also getting these inflammation cues/signals/patterns, causing us to over-react, and get malaise.
1 Like
Interesting. My hsCRP is 0.3 or less whenever I measure it but I still get a reduction in body aches after a 5-day FMD, so CRP isn’t everything. I’m confident that chronic inflammation is a key cause and effect of accelerated aging. I’m doing everything I can to keep it down, mostly following the advice of Dr Dwayne Jackson and Dr Valter Longo. And add in my expanded work on adaptive homeostasis. Of course some of the things I do boost inflammation in the short run so it’s a balancing act.
1 Like
