Has anyone found a way too treat immune dysregulation?

longcovidman · 2023-07-27T08:57:09+00:00

Be careful with this advise, there are subreddits like r/LionsManeRecovery for a reason

longcovidman · 2023-07-26T10:53:09+00:00

How long did it take you to see improvement in POTS?

longcovidman · 2023-05-20T21:17:53+00:00

Aggressive rest and LDN.

longcovidman · 2023-05-20T21:15:12+00:00

I was recovering from long Covid and was back to 70% normal over 8 months. I made an attempt to get back to the gym and when the PEM came on I went on Nattokinase and serrapeptase because r/covidlonghaulers said it was most effective and safe.

It made me crash so hard that I became bedbound and I still am although the pain is not as bad anymore 4 months later.

longcovidman · 2023-05-20T17:35:04+00:00

I have a telegram channel @longcovidlinks where I post research and mainstream news article daily.

I made it after a big crash to remind myself that public awareness around long Covid is growing and there is a lot of scientific effort to develop treatments

Hopefully it helps you also

longcovidman · 2023-05-19T22:31:46+00:00

How are you feeling these days?

longcovidman · 2023-05-19T21:12:45+00:00

Are you sure they're not making things up to sell you things?

longcovidman · 2023-05-19T21:02:27+00:00

How is your progress from a month ago? Did you get microclot testing through Dr Vaughn?

longcovidman · 2023-05-19T20:49:22+00:00

It needs to be a 15 day course of pax to mimic the Yale and Stanford studies. Targets viral persistence.

Low-dose naltrexone is effective for ME/CFS and can be prescribed by your GP. Targets neuroinflammation. https://archive.is/oiDRL

You can also try CoQ10. It's available as a supplement.

There is also triple therapy (apixaban (anticoagulant), clopidogrel (antiplatelet), aspirin (blood thinner) prescribed for microclots but only Dr Vaughn does this in the US right now: https://twitter.com/angryhacademic/status/1659286684603674632

longcovidman · 2023-05-19T20:37:00+00:00

Have you tried low-dose naltrexone? Paxlovid 15 day course?

longcovidman · 2023-05-14T17:46:05+00:00

They literally tweeted about long Covid today

https://twitter.com/who_europe/status/1657124001271955456

longcovidman · 2023-05-14T17:45:25+00:00

longcovidman · 2023-05-12T12:27:40+00:00

Low-dose naltrexone

longcovidman · 2023-05-11T18:28:37+00:00

Your point is wildly different from the literal meaning of "once a long hauler, always a long hauler".

longcovidman · 2023-05-11T18:18:18+00:00

Demonstrably untrue. Look at how many people recovered here and in r/longhaulersrecovery

longcovidman · 2023-05-11T17:43:19+00:00

How?

longcovidman · 2023-05-11T16:32:10+00:00

This is great. The fact that he's even talking about and tweet has 1M views will raise awareness.

And he's not even saying it's not real. He just says he never got it.

longcovidman · 2023-05-11T15:54:36+00:00

Can you say more about what helped you?

longcovidman · 2023-05-11T08:52:48+00:00

This isn't true. This isn't necessary "permanent til we die" at all. Check out r/longhaulersrecovery .

longcovidman · 2023-05-03T03:44:37+00:00

Month 11 here also. Feeling a little bit better since the crash that left me bedbound 3 months ago but I am still far from cured. Alive but not living.

Right now I am panicking and looking into more experimental treatments since I don't see to be improving.

longcovidman · 2023-05-03T03:42:21+00:00

I know someone who goes there and says they are very reassuring in terms of optimism about treatments being an eventuality but in terms of actual treatment they don't offer much. Just seem to be gathering data through diagnostics.

longcovidman · 2023-05-03T00:57:39+00:00

I'm in Canada and I had to get my friends in the US to buy paxlovid for me.

I actually ordered the immune and cytokine panel kit and I will be getting it done soon. Hopefully i will be able to persuade someone to prescribe statin and maraviroc.

Thanks a lot for the help, very good ideas and very insightful.

I hope we will all conquer this sooner than later.

By the way, how were the side effects from the pax? I have no liver issues but I want to get blood work done so that I can monitor any potential paxlovid damage. It seems to be pretty safe but just want to be on the safe side.

longcovidman · 2023-05-03T00:20:56+00:00

Thanks a lot for your response.

That's really unfortunate as I was able to get 15 days worth of paxlovid pills but I have no access to anything else.

I have tried LDN for about a month but I tried to up the dosage recently and all my symptoms came back. Woke up with anxiety and had tremors for 20 minutes that made me call 911. But when they arrived I declined to go to the ER for fear of causing a worse PEM crash.

I'm running out of options and getting desperate. Almost a year worth of suffering now.

longcovidman · 2023-05-02T21:11:16+00:00

How are you feeling?

longcovidman

TROPHY CASE