Long Covid Help/Hope in 2026?

Posted by oly78 @oly78, Aug 15 1:23pm

Background - 48 y.o. male - confirmed infections in 8/23 and 2/25 - whole family had an illness in early March 2020 (we suspect it was covid before people knew how widespread it was) and these health issues started for me around April 2020…. My wife has some issues, but she can still work and get through her day pretty well. I, however have been stuck on a roller coaster of illness, to the extent that I cannot work, and have been bed ridden for a large part of these 6 years, on and off.

For six years I have been battling long covid, and to be honest, I have no idea how I am still here as it has been an ongoing roller-coaster of a war.

My main symptoms have been the classic crushing lethargy and mild brainfog, along with sleeping disturbances, facial flushing, heat-intolerance - and then the big ones - major GI distress and throat/nasal issues with phlegm/mucus, etc.

All of this to say, my doctors and I have been searching for answers for 6 years and I have had a litany of tests (like a lot of people) - 3 EGD (scope into the stomach), laryngoscopies (scope through the nose to view nasal passages and throat (6), countless abdomen and chest and sinus CTs, blood work, barium swallows, swallowing studies - and of course, everything comes back normal and in range. Okay, so enough background.

I almost cried in 2025, after 5 years of no answers and suffering, and relapses, and no therapeutics that were making any difference (I am sure many can relate), when a friend of my mother’s passed an article to her that said “maybe this will help your son…” It was talking about how UC Davis, in Northern California, was using its high powered PET scanning machines (usually for cancer, etc.), in conjunction with UCSF Medical Center to follow radioactive tracers to look in the bodies of long covid sufferers and see if there were actually the supposed reservoirs of virus, that researchers and clinicians had postulated, might exist. Up until that time, they were really only seeing evidence of it in cadavers of those who has passed away, etc., and that unfortunately, does not paint a clear picture of why some people have been battling for YEARS.

At any rate, roughly a year later in 2026, it seems that a lot of clinical trials are active now, at least ones that seem to be making more progress, and I am more hopeful than I ever have been, but I also know the road is still probably a long one - but at least we are closer to not being “crazy” or “somatic” or any others of the things that conventional medicine or doctors who are stumped like to use. I pray that we may also actually be closer to proof and vindication that a lot of us may have these reservoirs, and that they may be playing a primary role in those with extended/persistent illness.

There are so many active studies that now look like (after confirming that there are indeed virus reservoirs throughout the body) they are trying to determine whether these reservoirs are harmful or benign or actually driving persistent inflammation, ongoing immune responses, and/or - the persistent illness/symptoms that people are still dealing with, etc.

And with that, there are also many clinical trials looking at old and new drugs to see if these reservoirs can be cleared, etc.

I would love to hear from anyone, now and in the future, as to if they go through any of these studies - have found doctors that actually care, have tried any drugs, etc.

I have Kaiser Permanente and it has been awful - plainly, AWFUL. They have done all the testing they can and then actually get mean when they feel like there is nothing more they can do - and trust me, I get it - it’s a very difficult illness to figure out, but I never dreamed that something I paid into would give up on me.

Kaiser is not a research institution and shoots in the dark without evidence, and the only thing they have latched onto recently has been the onset of LDN (low-dose naltrexone) and I have only read conflicting evidence, and it seems to be really hit or miss - and as we know, it’s a therapeutic if anything, it’s not getting at the core of whatever is causing persistent illness.

In advance, thank you to anyone reading, for those who can share any insight — and for all those in the fight, continue to stay strong!

- Oly

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Profile picture for andie1228 @andie1228

@vostie

It's been a while since I've been on the website so I apologize if you've covered this. What is LDN?

Thanks,
Andie

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@andie1228 it’s primarily an anti-opioid called Low Dose Naltrexone (LDN), which is being used off-label for LC sufferers…

Some LC patients have seen symptom improvements - it has anti-inflammatory properties and can also help to calm the immune response.

However, it can also come with side-effects (vivid dreams, insomnia, lethargy, etc.)

Right now, it is all the rage for the healthcare systems that don’t know what else to do, which is also cost effective for them, so they can have the appearance of doing something while we wait for actual therapeutics and medicines that address the real issues behind LC.

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Profile picture for ohpkease777 @ohpkease777

@colleenyoung
Is there an intervention or therapy to clear the “garbage“ left by spike proteins?

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@ohpkease777 there are many research studies and clinical trials trying to get at the heart of this, and to see if the “persistent viral reservoirs” are even responsible for LC symptoms…

Off the top of my head, they are looking at anti-virals (Paxlovid was a bust - UCSF), JAK-STAT inhibitors, monoclonal antibodies, and “blood-derived cell therapies” like RegeneCyte, which I had never heard of, and was quite interesting.

However, as John mentioned, there are no definitive interventions that have been proven to reduce spike protein or viral fragment load in patients, yet.

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Profile picture for oly78 @oly78

@andie1228 it’s primarily an anti-opioid called Low Dose Naltrexone (LDN), which is being used off-label for LC sufferers…

Some LC patients have seen symptom improvements - it has anti-inflammatory properties and can also help to calm the immune response.

However, it can also come with side-effects (vivid dreams, insomnia, lethargy, etc.)

Right now, it is all the rage for the healthcare systems that don’t know what else to do, which is also cost effective for them, so they can have the appearance of doing something while we wait for actual therapeutics and medicines that address the real issues behind LC.

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@oly78 ,

Thank you for the explanation. I tried the LDN once or twice and didn't notice any difference. I take several medications so I told my dr. since it's not working I wanted to discontinue it. I already feel like I have a small pharmacy.

I will say that I saw a post on this website for Amantadine. I have experienced some help with it just in case someone hasn't heard of it.

Thanks again!
Andie

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