I believe it was my post on Health Rising as well as corresponding with a couple of members here that initiated this thread about the use of Sirolimus (Rapamune.)
@Jesse2233 asked for an update so here goes. I am continuing to improve after 8 months use (2mg per day) with no noticeable side affects. I am a very long term patient (40 years replaps/remit.)
Lots of viral activity in my life and high titers at various points in my life. All other relapses occurred after a period of sickness or a severe physical exertion. This relapse started after a flu shot in fall 2014. Diagnosed with CFS in the early 90s and subsequently diagnosed by more doctors. Saw Montoya's PA, was on antivirals for about a year, along with LDN (GOOD), then stopped the anti-virals before I started the Sirolimus. Prior to Sirolimus, I was operating on a functional level averaging 1-2.5 In bed 95% of time.
Definitely housebound and only out if absolutely necessary. Severe PEM if I did do anything remotely taxing. Even a conversation lasting longer than 10 minutes or too much tv, computer, or reading, etc. would prompt a severe crash with many cognitive issues. During a crash I needed dark and quiet, and had a horrible sense of bees buzzing in my head. I've heard others call it wired but tired but this was much worse. My brain was like on fire. I could not carry on a cogent conversation.
Did not have pain as many do. But did have subtle muscle twitching during bad crashes. Immediately following the start of Sirolimus in January this year, and continuing to this day - the cognitive difficulties are just gone and I have much more energy and can function all day out of bed most days, and enjoy an occasional shopping spree and dinner or a movie out. I function consistently at around a 7-8 now. 10 for me is on the golf course and not quite there yet
If I don't listen to my body and pace my activities, I still have periods where I have to lie down to rest. BUT the recovery time after overdoing it, is a day or 2, not weeks or even months.
I am able take care of myself, do light housekeeping, and enjoy reading and art, and working part time on my computer in my business from home. And I have my brain back! I KNEW there was something going on with my immune system because this episode started out like others with light fever, swollen glands, fluish feeling for a few months, but morphed into something quite different - a period of NEVER getting normal sick, even with snotty grandkids and hubby with cold around all the time.
I believe my immune system was in overdrive which is why I thought to try the mTOR inhibitor, hoping it could modulate what was going on with my immune system. I got the flu within the first week after Sirolimus (along with husband who brought it home) and was really excited about being normal sick. Took a month to recover, and have been steadily improving since. I can not emphasis enough the disappearance of my cognitive difficulties. I hated the PEM because I normally am extremely active when I am well, but thought the brain dysfunction would be the end of me at some point. I just could not accept that part, and certainly could not think my way out of it! I do not follow a particularly stringent diet, I take a really good multivitamin with Metfolin, still take LDN at 5.5 mg, a blood pressure med, and metformin for pre-diabetes. (Both are long term RX) I stopped taking all other supplements about a year into this episode before I tried the anti-virals.
I am a stickler on one thing at a time to find out what actually works! I did come out of all other relapses within a few weeks or months of rest, but this one was different - long and new symptoms. Since nothing in my regimen changed I am assuming it is the Sirolimus causing the immediate improvement. The LDN had a positive affect on the cognitive but the Sirolimus was like LDN super plus. So... I am interested in the brilliant minds that frequent this forum,and would appreciate continuing the speculative discussions on how the pieces of this Sirolimus puzzle fit together, given the many new studies out now. I would love it if someone could diagram it! Sorry so long but wanted to give as much info so not too many questions.
