← Return to Long COVID exists for 5+ years: Share what has or not worked for you

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Profile picture for chuckstran @chuckstran

And thank you, greenshade.

Jumping ahead, how hard would it be for a moderator on this board who has the time to set up theraputic rubric?

Do this: List symptoms, and beside each list treatments, when first suggested, subsequent positive results for other posters on this forum.

Case in point, I mentioned and wrote several times about my use of NAC. Several others tried it with positive results. Then discussion of NAC descended into the bowels of old posts.

If a rubric or matrix were available documenting the success some of us have had with NAC its use - and benefits - could become more widespread, relieve more suffering. We'd become, in effect, our own case study think tank.

If (to pull numbers out of thin air) first a few, then 47 posters on this forum found relief and no negative side effects from NAC due to such a rubric being maintained as a feature of this board wouldn't that be cause for jumping with joy?

Why should this, and many other, potentially widespread beneficial treatment remain hidden in the catacombs of previous posts?

What would happen if several others tried 10 mg. of creatine daily, and all-of-a-sudden were able to become more active, and their results were posted where others would be inspired to try it? What would happen if creatine helped many others here, if the dosage were upped from the workout level 5 mg to a brain-effective 10 mg?

Would we not represent, in effect, an informal case study from a random group of users with positive results? And could this not be replicated for every effective self-treatment option we have tried?

And if the more widespred results from this or that prescription drug, or this or that expensive clinic works or doesn't work, could that not be posted and documented as well?

Can we encourage this? Can Mayo, through the efforts of the moderators and editors of this board do this?

Are we collectively willing to try?

I await your responses.

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Replies to "And thank you, greenshade. Jumping ahead, how hard would it be for a moderator on this..."

@chuckstran, great idea. For this reason, I pulled your post into a discussion of its own and called it:
- Long COVID exists for 5+ years: Share what has or not worked for you https://connect.mayoclinic.org/discussion/long-covid-exists-for-5-years-share-what-has-or-not-worked-for-you/

There is a website called PatientsLikeMe that does a great job of tabulating patient reported symptoms, treatments and outcomes. See their Long COVID data here: https://www.patientslikeme.com/conditions/COVID-19

@chuckstran The BIG problem is that everyone has different symptoms that appear randomly.There is a somewhat steady list of symptoms that most have had or have.I'm doing supplements.And they don't show a massive increase in health helping overnight.Unless they're IV.So it all takes time.I use carafate for my stomach.This knocks any starting pain right down.And keeps it gone.I'm not getting any more shots.Light brain fog that I can work with...it is getting better.3 years of supplements targeting the cells.It's a powerful and ugly virus..severe damage to every system it seems.I'm way better than I was...even a month ago.Keep looking UP.

@chuckstran

Thank you for your suggestion regarding a table showing which treatments have been successful, and for how many individuals each. This table would be a first priority.

Readers would then need to:
(a) further research each treatment of interest, to find out how much scientific evidence supports each treatment, and what side effects there might be, and
(b) consult with their healthcare provider about the potential treatment.

A second priority would be a parallel table showing, for each of the potential treatments, how many individuals received no benefit or suffered side effects.