Thoughts on rapamycin with a virus? I normally do not catch any virus - likely a sign of poor health linked to over activity of the immune system. Now on week 4 or 5 of rapamycin (twice weekly dose) and I caught a virus and spent 3 days bedridden, temp of 101-102.
Temp is down now and I don’t feel flu-ish but feel like a limp noodle, lack of energy, fatigue and brain fog. The lymph glands in my neck are still swollen and tender.
I’m debating whether the lymph nodes suggest an old virus has re-emerged and whether I should consider viral testing (ebv?) or treatment. I skipped a dose while I had the fever and am debating whether I should skip the next doses until my lymph glands reduce.
I saw recently that Dr green advises not to use rapamycin for Lyme disease, for fear reduced immune function may allow Lyme to proliferate and I guess that’s made me nervous. I’ve never tested for Lyme but I have a lot of overlap with the risk factors. And if “latent” viruses may be part of my long term chronic health problems - if now makes me a bit leery of rapamycin.
My first few doses using it were terrible but until this virus the recent weeks had me feeling better than I have in a very long time. So I’m trying to balance the optimism of those feeling-better days with my fear of not wanting to worsen my condition. And yes, I will consult my doctor, too, but value the hive mind! Any advice, thoughts, ideas greatly appreciated
Everyone is different, with different medical situations so its hard to generalize. But I have seen increasing numbers of people saying things like this tweet below (which to be honest suprised me a bit):
Without testing it’s not possible to know if it’s a virus. I had swollen lymph nodes on my neck when I tested positive for Covid last December. If it’s Covid, Rapamycin in fact could help to avoid cytokine storm. It helped me.
I haven’t been sick with infection for a very long time, besides Covid last December. I was taking Rapa for the first 5 days (1mg/day, then stopped for 12 days before restarting). It’s pretty much my regular protocol (I don’t take it every day like most transplant patients).
Thanks for sharing this. My fever is gone now but my energy remains extraordinarily low, along with an overall feeling of profound body weakness which is not my norm even with the mecfs history. Doc suggested I take a break from the rapa until I’m stronger. Guess my real worry is if Dr Green is right about rapa being a bad idea for Lyme. It’s difficult to know the best way to proceed given my medical history and risks are not the norm among those taking rapamycin. Appreciate your input.
So why not take a test for lyme, to put the uncertainty away? If positive, then you have to stop taking rapamycin. If negative, then a break is all that is needed.
Yes, that may be a good next step. I have always avoided lyme testing b/c it is very expensive, not covered by insurance, and notoriously inaccurate. Since there aren’t really any good treatments for lyme, it hasn’t seemed worthwhile.
Ummm… have you considered Epstein Barr Virus… EBV …Mono?
I caught it traveling… about 5 years ago… knocked my energy… liver phosphates was crazy high…
Slow slog back to full health… took 5 months.
You can kinda test for it looking at antibodies.
I was tired, so weak … was even sent to a cancer doctor… for 3 months… blood never found anything… he would say… it could be a virus… or cancer… never found cancer.
Just tested these. Both of the old infection markers were elevated but not the current infection marker. I’ve now had two doses after skipping 3 while sick, and I’m still feeling poorly. It’s been almost 3 weeks now.
It seems this may be happening to me. Not sure if I have Covid or not (I haven’t tested yet) but have a fever, slight cough and feel exhausted. I started Rapa about a week ago. 2mg Tuesday and Thursday and 6mg on Saturday with GFJ and EVOO. I missed my Monday workout yesterday because I felt like I had been hit by a truck. Serious muscle aches, feet felt tingly, burning and twice their size (they looked normal) and moving in ultra slow motion. Finally took a pain killer and went to bed yesterday evening. This morning I feel like I might bounce back. This is usually the way with me, even on the extremely rare occasion I start to get sick. I never had Covid so far or anything like that. I did have influenza A around 15 years ago and still remember that. My husband thinks it’s why we never got Covid. Do I take the Rapa today? What do y’all think?
Wow… This is a really, really high dose schedule and very frequent. What is your weight? Did you take each of those doses with GFJ and EVOO? If you did, that would be a dose equivalence of something like 35mg to 50mg a week… and since you are female, it could be double the mg/kg level compared to a male taking that same dose…
Most women take 3mg to 5mg total, and you are 10X to 50X that level… I really don’t think you want to be taking that much rapamycin!
It is what I arrived at after reading through everything I could find. I will go back and have a look again, but from what I remember the trend was moving towards bi and tri weekly doses which I have alternated with my workout routine. After researching dosage, my conclusion was that it appeared most were erring on the side of caution when compared to the doses used in the research.
I think the issue could be that you are interpreting people saying “bi-weekly” as being twice a week, when what they are meaning is once every two weeks (easy to mistinterpret this since both interpretations are “correct”).
People are typically taking rapamycin either once a week, or once every two weeks… and most people are starting really low, eg. 1mg/week and then slowly working up increasing by 1mg per week until they see some sort of side effect.
I think you want to take a few weeks off and then start slowly again…
