I've heard Ann arbor is a particularly bad city for me/cfs bc of the air. But also that Dallas is as well. Have heard this caution from many many people so wanted to pass it alongGreetings. I was the first member to post about the effectiveness of Rapamune (Sirolimus), prescribed by a Dallas oncologist. Update: I had amazing improvement (not total disappearance though) of all symptoms within a month of taking Sirolimus. No negative side effects, but after abou 6-7 months I plateaued and declined again to baseline moderate- severe. Under the Dr’s care I increased dose twice over a 3 month period to absolutely no effect. So I stopped as I had eye surgery coming up and was concerned about infection. I am now in Michigan near Ann Arbor (know any doctors?) and will try this medication again at some point - but waiting for pandemic to calm down. This RX was undeniably the most effective remedy for me. I believe I am in the Immune over activation Subgroup, probably with some autoimmunity involved as I test positive consistently for SCL 40. But rheumatologist say symptoms not severe enough and could be cross reactivity with other auto antibodies. Ugh! Under the right care I am hoping to try other modulators and/or suppressors at some point. But not during this pandemic. In the meantime I never get ‘normal’ sick for the last 6 years, and I have all the classic symptoms of severe fatigue, PEM, some cognitive difficulties when crashed, and muscle pain. The horrible seizure like head crashes are significantly diminished now - a good sign perhaps of a slow recovery? Pacing helps prevent crashes. Just wanted to update this long thread about my use of Sirolimus.
I have tried about all the things Dr Jeremy Waletzky tried before Rapamune, and more.New and very interesting piece on rapamycin from Cort Johnson:
Could you describe how much it helps your muscles? With examples etc? I have huge muscle issues and thinking aobut trying this atmHere a first report of my Rapamune trial:
I have clinical delayed muscle relaxation (like in myotonic dystrophy), muscle pain and weakness.
I also have skin microvascular damages, that got worse after my 4 RNA COVID vaccines.
I am currently doing a rapamycin trial, and yes it does help my muscle.
I take it once a week.
I got toxicity at 4 mg (drop of my blood red and white cells, rise of my liver parameter), but I am ok at 2 mg.
It helps with my muscles, but also with my skin vessels: I have some signs of skin perfusion improvment;
It helped with muscle strenght and muscle energy.Could you describe how much it helps your muscles? With examples etc? I have huge muscle issues and thinking aobut trying this atm
I’m happy to hear of your improvements on Rapamycin. I’m starting my own trial (thanks for commenting on that thread and for the warnings to watch my blood work!)It helped with muscle strenght and muscle energy.
My ME/FCS/Fibro may be comorbid with psoriatic arthritis, so I am currently doing a trial with methotrexate which is the forst drug of choice.
However I doesn't feel great on it, as often do people with depressive symptoms...