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

@chuckstran Thank you. Very well thought out and presented. After five years of COVID and just as many of LC, the scientists and experts are still not certain what LC is. The symptoms, yes. But not the etiology. The prevailing theory is that after infection, some patients retain "reservoirs" of the virus that continue to manifest symptoms months, years, or ??? longer. But that is only one theory, as yet unproven. So I suppose it should be no surprise that the health care industry does not have a consensus on how to treat LC. I live in CA and have Kaiser Permanente Insurance. KP treats LC symptomatically. So, in my case, I have gone to different physicians for mood disorder, hearing loss, vertigo, sleep disorder, fatigue, and muscle and joint pain. That would be fine except for one overreaching problem. No one is coordinating. No one oversees all those involved. They all have access to the notes of the others, but there seems to be no "connecting the dots." I feel as if I am being treated as six different patients. Given that there are already millions of Americans with LC, you would think that there would be an effort for all the healthcare providers to unite and find a consensus on treatment. Frankly, what has helped me the most I have discovered through my own research. One useful resource comes from the Yale Medical School. They are conducting various studies on COVID and LC and learning much along the way. A Japanese American, Dr. Iwasaki, heads the studies, but there are many highly qualified people working on different aspects of them. They are one of the few credible sources that have acknowledged that the mRNA vaccines/boosters can result, in a subset of patients, in a setback of symptoms of LC. They are not anti-vaxers, but they do acknowledge the issue and substantiate it with data.

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.

@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

Thank you, thank you!

Now, can data be gathered and a rubric, or table, be posted and updated periodically, similar to this simplified example?

SYMPTOM - THERAPY - HIGHLY EFFECTIVE - MODERATELY EFFECTIVE

Brain fog - 10 mg. creatine - 17 (# of users) - 4 (# of users)

This table is obviously incomplete due to space limitations in the posting format, but you get the idea. Reference to the original post would be valuable; an old post that has been proven beneficial over time might gather bigger numbers; a recent post with lower numbers might be promising but overlooked without supporting data citing date and source of original post.

This board certainly has enough in the way of random, scattered results to quantify and itemize, and in so doing could generate data that would benefit many of us. That is a big hope, but certainly doable.

My bigger hope is, as informal case-oriented data is gathered and updated, instead of waiting for double-blinded and time consuming (we've wasted too much time already!) controlled studies, the medical community at some point, maybe big Mayo, would tune in, sit up, and take notice.

Besides, there's NO MONEY for big pharma in studying the effectiveness of creatine, NAC, or morning sunlight! Positive results from such therapies would cut their revenues and they would vigorously oppose and discredit that as they have in the past!

Whether the doc relies on reported cases or controlled double-blinded placebo studies (as conducted by big pharma, always to boost their revenue) when it comes down to that 1:1 sit-down with the patient, the doctor is ultimately down to "Here, you might try this."

@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.

@h2998sc Thank you. My main issue is fatigue. It comes and goes. And GI issues (bowel upset - IBS - and diarrhea). And now, most recently, I have developed edema in my left foot. It is likely a result of venous insufficiency. It seems that there are more and more issues popping up. And, yes, one has to keep looking UP.

@greenshade
Main issues for all of us seem to be, in no prticular order, 1.) fatigue, either constant or post-exertion or both, 2.) respiratory issues of many overlapping sorts, and what ubiquitously gets called 3.) brain fog. There are many others, some of which appear to be exacerbation of a previous condition.

If a table existed for the big three, perhaps as a separate chart for each, that would be a great start. Others could be added later. On this board we've recently been through the exercise of prioritizing our most common ailments; now is the time to do something with what we've learned.

From a table, rubric, or series of charts (whatever format the board editors and mods deem most effective and workable) we could look up therapies, treatments, or behaviors that have proven effective for our fellow long haulers, do our own research, and make informed decisions for ourselves from there.

Please hit the like thumbs up button below or share your thoughts if you'd appreciate having such a tool useful. We're asking a lot of the board editors and administrators. They need to know in advance that their efforts will be valuable to us.