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.

pattig09 | @pattig09 | 5 days ago

In reply to @oly78 "@pattig09 now that there is some clarity as to what is happening (seems like you have..." + (show)

@oly78 This is a helpful medical report on EV packages, their purpose and what research has been up to regarding their functions. This science helped to identify the liver lipids deposited in my liver containing spike protein remnants. https://knowablemagazine.org/content/article/living-world/2019/bodys-tiny-cargo-carriers

This article includes details of Extracellular Vesicles and Cell-Free Therapy. Cell-Free Therapy captures the full spectrum of extracellular vesicles and their bioactive cargo. https://wellbeingint.com/pages/blog-post-01.html

Perhaps sharing both articles with your medical professional will assist.

onpainsufferer | @onpainsufferer | 5 days ago

In reply to @vostie "I also had Covid in March of 2020 and have sloughed through a very painful and..." + (show)

@vostie

I also had Covid in March of 2020 and have sloughed through a very painful and debilitating 6 years. But three years ago, I found a doctor that was open to treating covid and proactively called a long covid specialist ( whose practice was full) for me. We ended up with a list of about 13 possible treatments as each one of us long haulers are respond differently. We tried antivirals first and nothing made any of my symptoms better. Finally, we tried LDN and it substantially helped. I started at 1.5 mg and increased 1.5 mg per month to a final dose that I take now of 5 mg. I did have side effects to begin with - vivid dreams (not nightmares), sleepiness if I took it in the morning followed by insomnia when I took it at night followed by no sleepiness when I then started taking it in the morning again, and for a short period of time, I feeling of anxiousness a few hours after I would take it that slowly went away.

LDN has vastly improved my life...I have more energy in the morning to early afternoon and less breathlessness and malaise after exercise so I can walk 7/10 of a mile everyday. I have about 50% less pain from inflammation if I am careful to stay away from foods covid made me allergic to and only on rare occasions do I have bouts of fluctuating blood pressure and blood oxygen.

For me, starting higher levels of HRT helped with the heat and cold intolerance but did not stop it. When my stress is high, I am up drinking cold water only to then freeze for an hour before getting back to sleep.

And covid lowered my vitamin d levels substantially so supplementation has helped my sleep and overall energy.

I still have significant malaise for days if I do not practice extreme pacing. Just going over my small energy allotment for the day will put me down for two days but it is much better than before and I rarely get palpitations now. I am in the Scripts trial using GLP1 for long covid and it has worked for a few. I am seeing more and more studies on microdosing so will be trying that next with my doc. The full dose given for weight loss and diabetes appears to be too strong for most long haulers while microdosing seems to help with inflammation in the body and the brain...so we will see!

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@vostie How long were you on LDN before you saw improvement. I’m six months on LDN and haven’t noticed any improvement at all. I’m being treated at a large university’s Covid Clinic and they recently changed me to sublingual since between GI inflammation for Long Covid, LDN side effects never diminished. I’m frustrated because they won’t consider other medications yet, focused only on LDN still.

vostie | @vostie | 4 days ago

In reply to @onpainsufferer "@vostie How long were you on LDN before you saw improvement. I’m six months on LDN..." + (show)

@onpainsufferer LDN really started working for me about three months in at 3 mg but every long covid patient I have talked with is different. Some have relief at .5 and other had to go up to 6-8 mg.

I get better relief now at 5-6 mg per day. Take it first thing in the morning. It cuts my inflammation by about 50% (so much less pain) and after a year on LDN, I have much less fatigue and exercise induced malaise. I can walk about 7/20 of a mile every morning and have good energy if I practice extreme pacing (breaking tasks into smaller steps with lots of rest). I usually lay down about 1 pm and then have enough energy to get up at 4pm and cook dinner and converse with family. It is nothing like my precovid life but also nothing like the 1 1/2 years in bed post covid!

I get my LDN formulated at a compounding pharmacy into a pretty much tasteless liquid with no other additives like they put into the pills. I do not have any side effects unless I take it late in the day when it will give me insomnia.

Colleen Young, Connect Director | @colleenyoung | 2 days ago

In reply to @amyqk "@vostie I too thought LDN was my "miracle" -- I titrated up to 2.5 and felt..." + (show)

@amyqk, here is a list of current clinical trials related to long COVID at Mayo Clinic
https://www.mayo.edu/research/clinical-trials/diseases-conditions/post-covid-syndrome

amyqk | @amyqk | 2 days ago

In reply to @colleenyoung "@amyqk, here is a list of current clinical trials related to long COVID at Mayo Clinic..." + (show)

@colleenyoung
Thanks Colleen but I’m wondering where to obtain RESULTS from studies? It’s great that there are all these studies but is there any new, useful information for treating Long Covid?

diverdown1 | @diverdown1 | 1 day ago

In reply to @amyqk "@colleenyoung Thanks Colleen but I’m wondering where to obtain RESULTS from studies? It’s great that there..." + (show)

@amyqk Go to this site. https://recover-tlc.org/

or this site https://longcovidjustice.org/long-covid-essentials/

There are so many studies and research. Also, go to Google and type in Google Scholar. Once there, put Long COVID studies or whatever you want to search. There are research articles, however they are sometimes complex. I suggest reading the abstract and then the "findings", "Results" and/or "Discussion" part of the research article.

I can tell you that inflammation is a key factor. I can also tell you that they believe (from a research article I read) that other viruses, such as Epstein Barr Virus (EBV) are reactivated somehow when people like us, have gotten the Sars Covid-19 virus. The issue with a virus is that there is no medication, viruses have to work their way out. Also, with LC, there are so many other health issues that it causes, symptoms that, I believe, mimic other autoimmune illnesses. Fatigue, Brain Fog, Post-exertion malaise, weird rashes, GI issues, breathing issues, sometimes people are getting other health problems, some worse than others. Hang in there. Read as you are your own best advocate!

oly78 | @oly78 | 1 day ago

In reply to @diverdown1 "@amyqk Go to this site. https://recover-tlc.org/ or this site https://longcovidjustice.org/long-covid-essentials/ There are so many studies and..." + (show)

@diverdown1 not trying to be argumentative, about the “virus needing to work its way out,” but yes and no.

Sometimes our immune systems can wall them off, get rid of them, etc.

Then, there’s HIV, which completely disregards your statement - it IS controlled by a series of medications…

This actually has implications for the Regeneron study which did a two drug cocktail for LC (Regeneron cocktail: Casirivimab/imdevimab)

Just saying…

mishabear2025 | @mishabear2025 | 15 hours ago

Don't give up on the medical community. There are ongoing clinical trials that are zeroing in on a way ro identify LC issues.
I'm tired of my doctor's negative reaction every time I mention LC.
Here are ongoing trials that I requested joining :
(#1 ) Scripps Research institute in LaJolla. Ca. LoCITT-T- LONG COVID Treatment Trial .

(#2 )REVERSE-LC
GOOD LUCK

diverdown1 | @diverdown1 | 13 hours ago

In reply to @oly78 "@diverdown1 not trying to be argumentative, about the “virus needing to work its way out,” but..." + (show)

@oly78 Thanks. I will look and see if I can find research published about the Regeneron "cocktail." I was offered to be in a study on Barcinibab through Vanderbilt, but I declined. It is still on going.

frking | @frking | 13 hours ago

I too have been constantly afflicted with “something”. Most currently with Positional Vertigo. I am having acupuncture treatments and they are helping, but there is still a ways to go. Ritalin is also of help, 10mg daily, and I can almost function.
I am interested in the therapy or testing at UCDavis. Can you provide any more information. Thank you

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