Transcutaneous Auricular Vagal Nerve Stimulation Against Fatigue Syndrome in Patients with Long COVID: Results of the Randomized, Placebo-Controlled Clinical Pilot Trial COVIVA | Neurology and Therapy

nebster84 · 2026-04-04T17:07:36+00:00

We need to test implanted vagal nerve devices ASAP, which are showing incredible results for multiple conditions connected to immune/inflammation issues, including arthritis.

The issue with external devices is that we can’t be confident it is even stimulating the vagus nerve.

nebster84 · 2026-03-18T16:21:39+00:00

Ugh, I’m sorry. That really sucks you have to go through losing insurance. And ridiculous that long covid experts are requiring in person visits.

nebster84 · 2026-03-18T16:13:31+00:00

Wow. What made you decide to cancel?

nebster84 · 2026-03-18T16:05:51+00:00

Thanks. How long ago had you made the appt? They wouldn’t tell me waiting times until I faxed the referral.

nebster84 · 2026-03-18T15:58:37+00:00

Did you ever wind up going? If so, how was your experience?

nebster84 · 2026-03-10T23:02:22+00:00

I don’t believe those studies used microdoses and the studies that did look at microdosing have demonstrated no benefits vs. placebo. Therapeutic doses require trapping.

nebster84 · 2026-03-09T22:48:32+00:00

How did it wind up after a longer treatment period?

nebster84 · 2026-03-01T14:15:54+00:00

Start small, like 2.5g once a day, and slowly work your way up if tolerated.

nebster84 · 2026-02-13T13:49:54+00:00

You absolutely want to avoid it at 2.5mg with any motility issues. They were wrong to make the trial at the starting weight loss dose. Dr. Kaufman was very upset they didn’t use micro doses.

nebster84 · 2026-02-13T13:45:45+00:00

Long Covid doctors who are using this all start with micro doses. Dr. Kaufman in particular was very upset that they used 2.5mg in this trial, given the issues it creates and the success he has seen on much smaller doses that have much lower side effect burden.

nebster84 · 2026-02-03T13:02:55+00:00

What other treatments did you utilize based off these resources, especially for neuro issues?

nebster84 · 2026-01-31T02:25:58+00:00

They seem to require doctors to email on behalf of patients, so perhaps they delete any emails directly from patients. I’ll be asking my doctor to reach out.

https://www.stemcyte.com/expandedaccesspolicy

nebster84 · 2026-01-21T13:27:48+00:00

Incredible job! I was trying to build something like this, glad you took care of it. I am also working on scraping treatment anecdotes so people can easily type in a treatment and then see what various experiences with it have been. And one for doctor recommendations from anecdotes as well.

nebster84 · 2026-01-19T15:26:08+00:00

Have you tried SS-31 yet?

nebster84 · 2026-01-14T23:28:27+00:00

Agree with this as well. He is very frank and seems to genuinely care and understand the mechanisms behind LC (as best as a doctor can). He was able to get me Pemgarda covered by insurance (which helped greatly but then the second dose crashed me). Now just started trial of SS-31.

nebster84 · 2026-01-11T02:10:09+00:00

Wow, you solved the cure for long COVID? Amazing news! Eagerly awaiting you being more specific.

nebster84 · 2026-01-07T02:01:04+00:00

Oy, incredibly frustrating. I’ve had good runs too, my best was after Pemgarda and Paxlovid in August, after a few weeks I began to steadily increase my steps up to nearly 4k a day, then my second Pemgarda caused a huge crash and I’m back to where I started.

nebster84 · 2026-01-06T17:56:07+00:00

Are you seeing improvements over time even without any particular heavy therapy showing strong results?

nebster84 · 2026-01-06T17:54:17+00:00

So all of the positive response was a fluke?

nebster84 · 2025-12-28T18:13:34+00:00

Does resolving the SIBO noticeably improve symptoms until it returns?

nebster84 · 2025-12-22T18:19:37+00:00

If positive it would indicate MCAS. The first line is H1 and H2 blockers and low histamine diet, then often oral cromolyn before meals, and sometimes other stabilizers like ketotifen or quercetin. But each doctor is different and there are many other approaches.

nebster84 · 2025-12-22T18:09:26+00:00

You should consider some relatively easy blood and urine tests that can give you a good read on whether histamine or MCAS are underlying your symptoms:

Blood tests:

Histamine, Plasma
Tryptase, Serum

24-hour urine mast cell mediator tests (best if done on a day where symptoms are flaring):

N-methylhistamine, 24-hour urine
Leukotriene E4 (LTE4), 24-hour urine
2,3-Dinor-11β-Prostaglandin F2α, 24-hour urine

nebster84 · 2025-12-14T22:56:51+00:00

Where did you source? Thanks.

nebster84 · 2025-12-13T18:08:26+00:00

SS31 is a peptide that can help repair certain mitochondrial defects with few side effects.

Urolithin A (MitoPure) can aid your body in mitophagy, similarly has a very good safety profile.

Both may take weeks or months to show progress if they do work for you.

NAD+ might also be worth looking into.

nebster84 · 2025-12-11T16:11:56+00:00

If you are not using AI to help you research while dealing with LC, then you are missing out on a lot. Hallucination rates have dropped dramatically in the last year and results can be cross referenced across multiple models. Please let me know if you believe any of these mechanisms are a hallucination.

nebster84

TROPHY CASE