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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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That'd definitely be an interesting link, but I can't add anything useful.@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?
@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
...@XenForo, you still in remission?
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.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.
@XenForo What dosage are you taking each day. I'm interested in this tablet and might suggest it to my GP next.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.
Gosh, it's almost like the sulfasalazine makes me feel more tired, not less. I'm taking 500 mg twice a day.
Yeah night and day difference. I really miss itSounds like the Rapamune gave you definite improvement
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.pdfAnyone know if Rapamune carries a risk of the [JC Virus]...