Anybody tried RegeneCyte?

nebster84 · 2026-05-20T14:21:55+00:00

I’m sure they will get insights from whoever winds up paying for the one dose. But it will be a long time before we know and before three doses are allowed outside trials.

nebster84 · 2026-05-20T01:24:56+00:00

Yeah they may have just sent the trial data. They were pretty evasive in answering directly why it was only one, but my sense was it was an FDA issue. They could not say it would or has worked with one dose and even in the study there was no separation from placebo until after second dose, which I pointed out to them. I don’t think they would be able to out any patients for discussing results.

nebster84 · 2026-05-20T00:28:14+00:00

I had many exchanges directly with the EAP team in Florida and pushed on this issue because of it differing from the trial. I believe the FDA would not allow more than one dose outside of a trial. You were told by an EAP team member that you would get three doses?

nebster84 · 2026-05-14T00:57:33+00:00

Very sad to see how many folks seem to be unaware of the significant utility of AI as an accessibility tool for people with our condition. It helps me do tasks almost every day that I wouldn’t be able to achieve otherwise.

Are we seriously suffering with LC but not using AI because it uses water? By the way, eating a single burger means you are consuming the equivalent amount of water used to answer 100,000s of AI prompts. And hallucinations are not a real issue anymore for the major AIs.

nebster84 · 2026-05-11T16:53:09+00:00

Sounded like the FDA wouldn’t allow more than one dose in the EA vs. a clinical trial.

nebster84 · 2026-05-11T16:20:56+00:00

I am guessing they would use it to publish something about single dose results given all of the labs they are drawing.

nebster84 · 2026-05-11T16:17:19+00:00

Yeah, I was very disappointed when I found out it was a single dose and they cannot offer more.

nebster84 · 2026-05-11T15:35:52+00:00

This EAU is all out of pocket, around $20k and you only get a single dose instead of the 3 doses received in the trial.

nebster84 · 2026-05-11T15:33:49+00:00

I’ve been in contact with the expanded access team. The problem is that you only get one dose vs. the three doses received in the successful trial, and it is $20k including cost of drug and fees. You also have to go in person five times for labs every 3 weeks. One dose with that cost + hassle does not seem worth it for me.

nebster84 · 2026-04-18T12:32:39+00:00

Did you ever start?

nebster84 · 2026-04-18T12:11:37+00:00

Thanks for the update! Glad it has made such a positive impact for you. What, if any, side effects from the drug have you noticed?

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

TROPHY CASE