u/Liface

Last week, I was on a Renegade Research webinar where Amatica presented some research they did on the data they've collected so far from their research cohort:

https://www.amaticahealth.com/blog/first-findings-from-our-rna-sequencing-cohort/

They are a patient-founded company that sells RNA sequencing direct to Long COVID/ME patients. You get a dashboard with 20,000 RNA markers and you can see how yours compare across all different systems of the body, compared to both healthy controls and other patients. It's useful for seeing which pathways might be affected, setting you up for further testing and treatments.

There was a bunch of interesting information that you can find in the blog post above, but the part that most interested me is that even though they are early in their sample collection (they have only 159 people who have ordered the test), they found that their RNA blood signature diagnoses 92% of ME and Long COVID patients correctly.

(Now, the problem is that it also falsely flags 22% of healthy people, but I asked them about this on the webinar and they were confident that with more samples they can get this to a clinically copacetic standard - ideally you'd want both sensitivity and specificity above 90%.)

One other caveat is telling us apart from people with untreated hypothyroidism, or depression, or post-viral illness that resolved, is a much harder problem and this probably isn't quite ready yet. Specificity against that group would almost certainly be worse.

But in any case, I think it's important for people to know how promising this is! We've had biomarker studies come out in the past, but nothing that was immediately commercially available like Amatica is (though to be clear, you don't exactly get a "you have Long COVID" indicator in your dashboard yet, though I have seen examples on Twitter of people downloading their raw data, putting it into AI, and it correctly guessed what they have.)

Disclaimer: I have no affiliation to Amatica, though I did buy their test and am in the next run to have my RNA sequenced.

Note that this was posted earlier today but without much explanation, and I figured it deserved one

Rapamycin (sirolimus) is an mTOR inhibitor, originally an immunosuppressant, used to prevent transplant rejection, but now popular in the longevity space for its effects on cellular senescence and autophagy.

The case for Long COVID is that chronic mTOR overactivation may drive some of our metabolic and immune dysfunction, and pulsed dosing may attenuate PEM by clearing senescent cells and restoring autophagic flux.

Sourcing: IndiaMart, $1/mg

Dose: I started at 0.5mg and worked up to 6mg, once weekly, and am now seven weeks in.

What happened:

• First two weeks: no positive effects, but no side effects either - decent news!
• The day after titrating up to 4.5mg, I noticed my morning clarity improving and my afternoon bajón shrinking and attenuating.
• Last three weeks: overall baseline is slightly better, and for the first time I can watch TikTok or YouTube for hours on rare good days.
• Most notably, my PEM episodes have halved in duration and are much less painful! This is very rare, there are not many medications that can touch PEM.
• I've noticed no side effects or downsides.
• I do not notice any difference between the day after my dose and the day before my next dose, in other words, my condition does not fluctuate throughout the week.

I'd have to stop taking it to be sure, but at seven weeks I would reasonably characterize myself as a positive responder.

I am waiting on some basic labs that my doctor had me do to see if it was doing any damage, but from what I can see, the risk is low.

Verdict: Rapamycin is not a total miracle - I'm still bedbound - but a very solid addition to my stack. I'll now try increasing the dose, based on some anecdotes that positive responders should try higher doses. Trying 9mg tonight.

If anyone else has tried rapamycin, please leave your anecdote in the comments!

P.S. list of stuff that works for me so far:

• rapamycin
• low dose abilify
• quviviq [for sleep maintenance insomnia]
• ativan/lorazepam
• bromantane [kind of]

Previously: Amantadine, Meldonium

See also: I analyzed all Long COVID/ME rapamycin anecdotes on Reddit

Amantadine is a "brain drug", a NMDA receptor antagonist (in the same broad bucket as DXM) and a dopaminergic, an antiviral that's also used for Parkinson's and drug-induced movement disorders. It's structurally related to the nootropic bromantane, which I use on occasion for a bit of clean energy, but which always causes insomnia for me.

I'm experimenting with brain drugs for symptom reduction as I'm quite severe with post-COVID ME (almost completely bedbound), while I try and fix my root cause. I looked at amantadine, lamotrigine, and memantine, but it seemed like amantadine was the best fit for my symptoms.

Dose: 25mg in liquid solution, about 1/4 of a standard dose, mid-morning

What happened:

• As it kicked in I started feeling partially numb throughout my body, with a strong urge to shut my eyes.
• I entered a parasympathetic coma-like state for a bit, and was more adrenalized at sudden sounds.
• After a couple hours most of that disappeared, leaving me overstimulated and unable to concentrate. I still felt kind of numb.
• My vision and light tolerance also got worse.
• I slept better than I have in a while. Not sure if this was correlated.

The adverse reaction was similar to what I experienced with DXM, which fits given the shared NMDA antagonism. What's interesting is that bromantane gave me none of this.

The half-life is long at ~15h, so the effect lasted into the next day.

Verdict: Definitely not trying again.

Per my scraping of reddit posts and comments mentioning amantadine, 21% worsened, with major side effects being insomnia, anxiety, headache, dizziness, nausea. Basically overstimulation. However, 55% reported that they felt better.

If anyone else has tried Amantadine, please leave your anecdote in the comments!

Previously: Meldonium