r/covidlonghaulers • u/LeageofMagic • 22h ago

Update My rapamycin experience

Kept a detailed health journal for 3 months while I took it.

The drug didn't do jack squat for me, outside of consistent canker sores which started about a month in and went away a week after I stopped.

The journal helped make the importance of sleep more clear though. The majority of my crashes followed periods of poor sleep.

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6

u/mermaidslovetea 21h ago

Thanks so much for sharing this experience. I am sorry it wasn’t better for you. Please may I ask what dosage/schedule you tried?

5

u/LeageofMagic 20h ago

As prescribed, 3mg taken once per week

5

u/notarussian1950 21h ago

Hasn’t done anything for me either. Been on it for a few months now. 15 mg compounded from my health span. 

3

u/Outrageous-Aside100 1yr 20h ago

same here, 6mg a week for 5 months now with no improvement in neuro LC, will finish the final month and then stop

1

u/LightBlue1997 16h ago

Can I ask u what symptoms do you have

3

u/Outrageous-Aside100 1yr 16h ago

Anhedonia, head pressure, agitation, restlessness, overstimulation, disassociation, fog, light/sound sensitivity, dizziness/off balance when standing, cold extremities

1

u/Pure_Translator_5103 15h ago

I’ve had most of those symptoms 2 years+ so far as well. I’m trying to figure out the overstimulation, sound, light, touch sensitivity, tinnitus root cause. Feels like a type of neuropathy, dysautonomia. Get tingly, weak arms and legs in certain positions. Ties into agitation, restlessness. Fatigue, brain fog, dizziness are brutal tho. Strange inner ear, Eustachian, jaw area aches I can’t figure out either. I get really cold easily too. When it’s below 70 outside I’m frozen and bundled up. Cold hands prominent. Heat sensitivity too in summer. Have you had any luck with diagnosing conditions causing some of your symptoms?

3

u/Outrageous-Aside100 1yr 14h ago

I’m over three years now. Yeah I also get a weird ear thing where for a few seconds it feels muffled/clogged and have a high pitched noise. It only happens in one ear at a time. I don’t know if it’s tinnitus or some sort of eustachian issue but it’s bizarre. I haven’t had any luck on diagnosis. I’ve had a number of anomalies on labs like high ebv early antigen, high urine/plasma histamine, low vegf, high fibrin monomer and thrombin antithrombin complex, low cd57, and various others. The problem is treating these things using antihistamines, antivirals, anticoagulant enzymes, immune boosters, etc hasn’t gotten me anywhere. I feel like my brain has been poisoned 24/7.

2

u/Pure_Translator_5103 14h ago

Interesting. Same way I describe I feel poisoned. Haven’t had success with meds, supplements, nasal sprays.

2

u/LightBlue1997 16h ago

Wow, we have some symptoms in common, namely these: cold extremities, sometimes a feeling of an empty head, restlessness, a sensation of being overstimulated (I don't suffer from anxiety). I feel kind of stuck in fight/flight. I have other symptoms too...

I'm a bit thoughtful; I should probably start Rapamycin as well, but I'm not sure how much it will actually help.

Thank you for your feedback!

2

u/LightBlue1997 16h ago

Can I ask you what symptoms do you have?

3

u/LeageofMagic 16h ago

I've got lyme disease too which went unnoticed likely for many years until the long covid started and the 12th doctor found it in the bloodwork (and confirmed by the next two doctors who initially didn't believe it).

I've got POTS, PEM, and brain fog as the main symptoms but I also have 5 new allergies/overactive histamine/inflammation in legs and feet which is sometimes painful enough to keep me in bed all day. Avoiding triggers for histamine stuff and good hygiene usually keeps the inflammation manageable. My symptoms on the inflammation front aren't nearly as intense or frequent as many others here, but still definitely present. 

I'm not sure that insomnia is the right word, but being unable to exercise in addition to the other symptoms makes sleeping very difficult most nights. I also have tinnitus from working in machine shops which went from mild to more severe with long covid even though I haven't worked in almost 3 years.

The POTS is pretty intense. I lost track a long time ago of how many times I passed out, including during a turn table test. This happens most often on the way to or from the bathroom in the morning before I've eaten. The POTS gets much worse when PEM is triggered and occasionally keeps me in bed for days. Typically I can get around the house without too much trouble as long as I take my time, stay hydrated/fed, and I'm not crashing from PEM.

I have pretty good support from family but not always. I'm quite thankful despite it all and my mental health is still doing well other than brain fog and low mental stamina. 

1

u/SpaceXCoyote 36m ago

I'll second this, I'm more than 2 months into rapamycin at a 6 mg a week dose and it definitely hasn't been the miracle cure.