mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

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Tunguska

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516
Jesse2233 said:
@Tunguska

What do you make of rapamycin effect on regulating B cells affected by lipopolysaccharides in graft verse host disease? Might this tie rapamycin's potenial effectiveness to De Meirleir's work on gram negative bacteria and lipopolysaccharide toxicity?
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That'd definitely be an interesting link, but I can't add anything useful.
 
XenForo

XenForo

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@Tunguska Do you think the Chinese medicine Si Miao San or Four Marvels Formula might substitute for rapamune?
Here's a journal paper, "Modified Si-Miao-San inhibits inflammation and promotes glucose disposal in adipocytes through regulation of AMP-kinase" in Chinese Journal of Natural Medicines:
https://cyber.sci-hub.cc/MTAuMTAxNi9zMTg3NS01MzY0KDE0KTYwMTM0LTU=/yang2014.pdf

Or how about the Chinese medicine Si Shen Wan, or Four Miracles Formula. Here's an article, "Si Shen Wan Regulates Phospholipase C-1 and PI3K/Akt Signal in Colonic Mucosa from Rats with Colitis"
https://pdfs.semanticscholar.org/4aab/cb174898e37ffa9295b08fb5679e1116fc39.pdf
 
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T

Tunguska

Senior Member
Messages
516
XenForo said:
@Tunguska Do you think the Chinese medicine Si Miao San or Four Marvels Formula might substitute for rapamune?
Here's a journal paper, "Modified Si-Miao-San inhibits inflammation and promotes glucose disposal in adipocytes through regulation of AMP-kinase" in Chinese Journal of Natural Medicines:
https://cyber.sci-hub.cc/MTAuMTAxNi9zMTg3NS01MzY0KDE0KTYwMTM0LTU=/yang2014.pdf

Or how about the Chinese medicine Si Shen Wan, or Four Miracles Formula. Here's an article, "Si Shen Wan Regulates Phospholipase C-1 and PI3K/Akt Signal in Colonic Mucosa from Rats with Colitis"
https://pdfs.semanticscholar.org/4aab/cb174898e37ffa9295b08fb5679e1116fc39.pdf
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The first study, according to what they found it has a similar effect outside brain as ALA, and by extension very loosely rapamycin metabolically but doubt it counts as any substitute... It's several herbs and according to them contains berberine, so far from ideal for any purpose including experimentation.

The second study is confusing, but it ends up suppressing PI3K/Akt(/mTor) in colon cells... where it was already high, in sick rats... I wouldn't use that study, unless you were thinking about IBD, but even then.
 
XenForo

XenForo

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107
necessary8 said:
...@XenForo, you still in remission?
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I lapsed, and was sick in bed all day for a few days again. Took one rapamune pill and was good to go for a few more days. Total change. It's like the rapamune makes it all better for me. But I'm trying to stay off it. Doc wrote a script for something similar without the cancer threat. It's called Sulfasalazine. I (not surprisingly) have never heard of it and know nothing about it. Starting on it soon. I hope it's helpful for me.
 
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dreampop

dreampop

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XenForo said:
I lapsed, and was sick in bed all day for a few days again. Took one rapamune pill and was good to go for a few more days. Total change. It's like the rapamune makes it all better for me. But I'm trying to stay off it. Doc wrote a script for something similar without the cancer threat. It's called Sulfasalazine. I (not surprisingly) have never heard of it and know nothing about it. Starting on it soon. I hope it's helpful for me.
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Interested to hear how Sulfasalazine works for you. Haven't heard it being used for CFS and didn't find anything when I searched for it.
 
rosie26

rosie26

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XenForo said:
I lapsed, and was sick in bed all day for a few days again. Took one rapamune pill and was good to go for a few more days. Total change. It's like the rapamune makes it all better for me. But I'm trying to stay off it. Doc wrote a script for something similar without the cancer threat. It's called Sulfasalazine. I (not surprisingly) have never heard of it and know nothing about it. Starting on it soon. I hope it's helpful for me.
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@XenForo What dosage are you taking each day. I'm interested in this tablet and might suggest it to my GP next.
 
XenForo

XenForo

Senior Member
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107
Gosh, it's almost like the sulfasalazine makes me feel more tired, not less. I'm taking 500 mg twice a day.
 
dreampop

dreampop

Senior Member
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296
Anyone know if Rapamune carries a risk of the JC Virus like Ritux? I couldn't find anything on it.
 
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XenForo

XenForo

Senior Member
Messages
107
dreampop said:
Anyone know if Rapamune carries a risk of the [JC Virus]...
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Here's a paper from the journal Transplantation, BK Virus–Associated Nephropathy in Sirolimus-Treated Renal Transplant Patients: Incidence, Course, and Clinical Outcomes: https://zeze.sci-hub.cc/ef2a1b38a294ac83c55842c02373f95e/benavides2007.pdf

Here's a paper from the journal Transplantation Proceedings, Opportunistic Posttransplantation Virus Infections in Renal Transplant Recipients: https://moscow.sci-hub.cc/551c37ae4a2918e0e01ee8c12ead0890/hu2011.pdf

if I'm reading these papers correctly, they seem to be saying no.
 
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