✨How I Recovered from Long Covid PEM:✨

Hey everyone, I've waited a while to share this - I wanted to make sure my improvements stuck.

It's been almost a year now, in total - wow!

1/ In spring 2024, I put together a 3-part treatment plan based on the idea that I needed to clear the SARS-CoV-2 virus from my body.

While viral persistence may not be the root cause for everyone with Long Covid, I was strongly influenced by this 2024 preprint...

2/

Hey everyone,

If you're wondering how to get your SARS-CoV-2 antibody levels tested, here's what I did:

Here in the US, the best option I could find is this specific test at Labcorp:

SARS-CoV-2 Antibody Profile, Nucleocapsid and Spike
Test # 160236

1/ It has to be this *specific* Labcorp test - # 160236.

I've had other antibody tests done, both at Labcorp and Quest, and none of them gave the level of information I wanted.

(They either cut off at 2500 U/mL, or just say "positive" without giving you a number at all).

2/

Update for my Long Covid peeps:

The bad: had a suspicious insect bite with a Lyme? rash last week. Started the antibiotic cefuroxime. So far no systemic symptoms🤞

The good (?) Lyme-literate doctor started me on herbal antibiotics which are giving me TONS of energy...

1/ Specifically, he prescribed the Chinese medicine herb dan shen which he said helps a lot of his LC patients by improving blood flow.

It also activates the immune system and is broadly antimicrobial

Link:

2/ pmc.ncbi.nlm.nih.gov/articles/PMC37…

I gotta write a longer post on this, but if you have #longcovid and you aren’t already, please take glutathione and CoQ10.

They strengthen your immune system and help fight viral persistence in a way that doesn’t create resistance. I’ve found results can vary with different forms and brands.

I got great results once I switched to this liposomal glutathione brand:



I just take one capsule, on an empty stomach. 2 caps make me feel a little too amazing + then I can’t sleep 😂amzn.to/4gONK0k

Huge finding from the @UCSF team. #longcovid patients have abnormally low levels of Natural Killer cells- the immune cells responsible for clearing virally infected cells.

Consistent with the growing evidence for viral persistence as a cause of LC. 1/

https://twitter.com/atranscendedman/status/1869081456712220814

At this point it isn’t clear whether the difference in NK cells is the cause of viral persistence, or if it’s the result. 2/

Hey #longcovid crew, thought I'd put something positive out into the world right now. At 15 months in, *some* of my symptoms have improved greatly.

I’m honestly not sure whether it was time or one of the things I did, but I thought I’d share in case it helps someone... 1/ As you may know, I believe I'm in the chronic Sars2 infection subgroup, due to my persistently high anti-spike antibodies.

I've been trying to plan a long-term combination antiviral trial. In the meantime, I tried a bunch of things... 2/

Oh my god, you guys- @NIHDirector just said #longcovid is live, replicating virus.

"We see evidence of persistent live virus in humans in various tissue reservoirs, including surrounding nerves, the brain, the GI tract, to the lung."

FINALLY.

medpagetoday.com/opinion/faustf… @NIHDirector I cannot get over how amazing this interview is. @jeremyfaust thank you so much for putting this out there.

We have needed this confirmation for SO LONG.

Now we need actual antiviral treatments.

Currently researching glutathione to see if it can activate natural killer cells in #longcovid

https://twitter.com/organichemusic/status/1585509439431376896

Dr. Michaela Muller-Trutwin's team believes there may be viral persistence in the lungs of EVERYONE who's had #SarsCov2. Not only those of us with LC

We will need strong natural killer cell ability + therapies to clear this (h/t @winslow_la) 2/n

https://x.com/winslow_la/status/1751633775673360424

Hey everyone, so I have a small update on my #longcovid antiviral treatment. I promise to keep you all posted on the good, the bad, and the mundane-

After my bittersweet success last week I took a few days off, then tried a small dose of Truvada yesterday… 1/

https://twitter.com/fcknsyd/status/1777051490005205444

Closer to 1/4 pill than 1/8.

I was hoping I’d get another miracle today, but so far no real change.

Not sure what it was about my amazing day on Tuesday.

Could have been the combination of Maraviroc and Truvada, or the fact that it had been two days of Maraviroc in a row. 2/

Hey everyone, I have a bittersweet update on my personal trial of antivirals for #longcovid.

The good news: I had dramatic improvement in 2 days. I'm convinced antivirals are my answer.

The bad news: Due to side effects, these aren't the right meds for me. 1/ What happened: I posted on Friday that I was beginning a trial of maraviroc and truvada.

Over the weekend, I started with VERY small doses of these meds. This is how I always try new meds, with MCAS. 2/

https://x.com/sun_in_winter12/status/1773779360920535409?s=20

Hey everyone, I can't stress enough that if you're going to trial antivirals for #longcovid, please be sure to investigate whether a combo would be most effective

For example, sofosbuvir will be much more effective if taken with an exonuclease inhibitor

ncbi.nlm.nih.gov/pmc/articles/P… Among the drugs people are trying, the study found the same thing for Remdesivir, Favipiravir, and Molnupiravir

These drugs work by interrupting the process of viral replication. Here's one on how sofosbuvir + possibly ledipasvir work against Sars2:

ncbi.nlm.nih.gov/pmc/articles/P…

Just met with a doctor who's prescribing me multiple antivirals for #longcovid. Beyond disgusted with our govt for providing no warning and no treatments.

Honestly I urge anyone considering antivirals to start now. My doc said I might have made things worse by waiting. I’m starting maraviroc and truvada together. He normally prescribed them separately, but he’s giving them to me together because I’m so severe.

On the bright side, both were covered by my insurance 2/

Questions I have:

-How is prolonged #SARSCoV2 infection different from #longcovid?

-We see #longcovid patients who had diagnosed immune deficiency before Covid- Should they be characterized as having LC or a persistent infection?

And are these really 2 separate things? 1/

https://twitter.com/keithdurkin/status/1765008762325045410

-Can we use the same treatments to clear the virus in both populations?

See this case study where 2 patients with prolonged infection and secondary antibody deficiency were successfully treated with @Regeneron monoclonal antibodies + Remdesivir 2/

pubmed.ncbi.nlm.nih.gov/34969393/

Hey everyone, I wanted to highlight this groundbreaking #longcovid preprint

If you haven’t seen this yet you should know:

**High anti-spike antibodies that don’t wane 6 months after infection may be a sign of viral persistence** 1/

👇

medrxiv.org/content/10.110… In this study, researchers recruited out of LC clinics in Sweden and Belgium.

They purposely chose patients with the most severe symptoms following a mild infection. The goal was to zero in on the root cause of LC, as opposed to organ damage from severe infection. 2/

ICYMI the Bomsel group in a France recently presented data showing #longcovid viral persistence in megakaryocytes. These are the cells that make platelets, and they’re found in bone marrow.

30/30 subjects had platelets containing infectious viral RNA and microclots. 1/ The team looked to see if it was possible the platelets were picking up the viral material from the bloodstream.

But they determined that, in fact, no- the platelets were in fact being PRODUCED with infectious virus inside of them. 2/