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.

suefish | @suefish | 1 day ago

In reply to @jgk177 "@dido2 I'm so sorry.. 6 years is way too long to be dealing with this. I'm..." + (show)

@jgk177

@dido2 I'm so sorry.. 6 years is way too long to be dealing with this.
I'm almost right behind you at 4 years. I have been looking into MCAS from long covid. I had it in 7/22 and 12 23. I have been going downhill since 7/22. I also had 3 shots (including 2 boosters). I started with daily headaches for about 60 days after I cleared the virus. Because I was not a headache person, this was the most profound symptom at first. The brain fog and fatigue seemed to be a by product of the headaches. Then my digestive system started going haywire. Then my body's ability to regulate temperature seemed to vanish. I was living in the desert at the time and had chills all the time. Day and night, always actual chills. The bloating and gas and upset stomach became a constant. Then I started having what seemed like random pelvic and lower back pain. That was debilitating. I saw 10 doctors, no one had an answer. I started working with an RD and after 2 years she said my symptoms were similar to some symptoms associated with MCAS. It was ONLY then I realized when I ate certain things, I got "sick". Things I had been eating my entire life, I could no long tolerate. Cold drinks, carbonated drinks, yeast (bread) mushrooms, avocado, anything at all that was fermented, citrus, zuchini, rice, most carbs, the list goes on. When I started eliminating foods, I started feeling better. The problem became I was LIMITED to eating about a dozen things, and that was both unsustainable and unhealthy. I JUST had an endoscopy and I have stomach ulcers (no one every checked for them before) and I'm about to do a 24 hour urine catch to see if I do in fact have MCAS. Both of these conditions ( MCAS AND ulcers) apparently are associated with long covid. I also started taking claritin which helps significantly with inflammatory responses, now presciption pepsid, and the thing that has helped me feel human again, believe it or not, Wegovy. I gained almost 20 pounds in the past 4 years which has been a part of this cycle of suffering. When I get "sick" I get hungrier. Most people lose weight, I gained it. I was told by my son in law who is a veterinarian, to ask for the claritin, pepsid and a GLP-1. The combination has truly helped me feel like i no longer have an alien in my body.. I feel "normal" 80% of the time, for the first time in 4 years.. I used to never feel "normal" and feel horrible 70-80% of the time. SO while this is not perfect, it's SO much better than it was. I am still seeking answers, but to feel relief even if it's not all day every day, has been nothing short of a miracle. I hope you find relief soon!! You may find this helpful.. https://pmc.ncbi.nlm.nih.gov/articles/PMC10166245/

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@jgk177 I know EXACTLY what you mean.

sjde53 | @sjde53 | 1 day ago

I couldn’t see all of this without a subscription-

“Long COVID's brain fog finally has a biological explanation:
Dopamine loss

For years, long COVID has been defined almost entirely by what patients report feeling: fatigue, brain fog, memory lapses, a loss of motivation that won't lift.

Recent brain imaging researcn links persistent long COVID neurological symptoms to measurable reductions in dopamine-releasing nerve terminals in the brain.
A study published in eBioMedicine by researchers at the Centre for Addiction and Mental Health (CAMH) used PET scans to compare adults with long COVID to healthy control participants. Patients with long COVID showed a 16% to 20% reduction in VMAT2 (a marker for dopamine nerve terminal density) across key regions of the striatum. *
This offers objective, biological evidence that long COVID neuropsychiatric symptoms are rooted in physical changes in the brain rather than being psychological.”

What’s interesting too , is this is exactly what happens in Parkinson’s disease.

jgk177 | @jgk177 | 16 hours ago

In reply to @suefish "@jgk177 I know EXACTLY what you mean." + (show)

@suefish I'm sorry to hear that, because it means you have been and continue to suffer. I truly hope for relief for all of us. Hearing people who have never suffered from long covid say "it's like a bad cold" is so upsetting. People in my own family say things like that. Like most other things in life, I imagine this is all a matter of luck.. some people get the virus and lose their lives, others are severely incapacitated long term, and It feels to me there is a massive number of us who have long term suffering on a level that makes us miserable but does not incapacitate us. And then there are people who got it, cleared it and it's like they never had it. Random and a degree of luck. Although I get tired of the fight and every so often I take a pause from it, I will never fully give up the search for answers and relief. The quality of life depends on it!!

suefish | @suefish | 13 hours ago

In reply to @jgk177 "@suefish I'm sorry to hear that, because it means you have been and continue to suffer...." + (show)

@jgk177, thanks for the explanations and the support. Much appreciated!

juliasgarden | @juliasgarden | 12 hours ago

Thanks so much to you all for the validation of my experiences since March of 2019. I had long COVID for 2 years, severe bronchitis, breathing and neurological issues. I recovered for about a year and then came down with an extremely severe gastro long COVID which 3 years later I have not fully recovered from. I am so sorry about the struggles you have all been through and send you healing wishes. A couple of medical people have told me that they observed that people like me who have asthma or other respiratory issues are particularly vulnerable to COVID and Long COVID, since COVID is a respiratory disease. Thank you to the person above who spoke of the remaining "reservoirs" of COVID that can remain in the body. I also read an article in The NYT recently which did confirm damage to one's biological defense systems and immune systems. This would explain a lot. I used to be very strong and healthy, I like to swim a lot. Now my health is unpredictable and the brain fog, fatigue and being so susceptible to infections and viruses that last way too long is challenging. I have been so disappointed that I have been unable to find a long COVID clinic in a big city like Chicago and don't understand why there has been so little support for people like us in finding ways of improving our health and quality of life. My heartfelt best wishes to you all.

kaybast | @kaybast | 11 hours ago

In reply to @celia16 "I have had many of the symptoms you describe, plus others I won’t list here. I..." + (show)

@celia16 I had a complete work up by my Rhumotologist . His findings were high inflamatory markers in my bones, blood and gut. He prescribed infusions for me of Remicade.
However cultures from sinus and lungs showed colonized Pseudomonas . So I could not proceed with the infusions until I get clearance of the Pseudomonas .
I am scheduled for sinus surgery on the 7th of Oct . The left maxillary has been trouble for some time . It is thought by my ENT Dr that’s where the Bacteria started and dripped down through the throat to my lungs ….He feels he will be able to eradicate the bacteria through the surgery .
Now my Pulmonologist is dealing with it being in the lungs . Over the last hear and half I’ve had 5 different infections .
Ironically I was hospitalized at the end of 2019 for eight days …and now all of my contingent of Doctors think that I had Covid as Covid was officially named in a month or two later .
My Pulmonologist has diagnosed me with Asthma and COPD and I have Pulmonary Hypertension..just turned 85 in June .
My goal is to follow my Rhumotologist direction as far as the infusions . I think he will proceed if it gets eliminated from my sinus and I can bring up another sputum to see about my lungs . I have no active infections ..and that what “colonized” means . It’s resting there but not causing infection .
I am going to ask my Doctors about the Hydroxychloroquine.
All the best to you in your continued treatment and feeling much better … Kay

pattig09 | @pattig09 | 9 hours ago

In reply to @sjde53 "I couldn’t see all of this without a subscription- “Long COVID's brain fog finally has a..." + (show)

@sjde53 Great post. It seems University of Minnesota posted this news also: https://www.cidrap.umn.edu/covid-19/new-study-offers-clues-about-long-covid-s-brain-symptoms

jgk177 | @jgk177 | 7 hours ago

In reply to @juliasgarden "Thanks so much to you all for the validation of my experiences since March of 2019...." + (show)

@juliasgarden The reason there are so few resources is most physicians are working to their max just to be able to get through the days.. many doctors find themselves working for the insurance companies and being financially "punished" for diving deep into a patient who presents with a complicated load of symptoms. And there is STILL so much we don't knnow about Covid. It's not just deadly in some cases, it was a new virus, one that scientists had not seen before, and although it feels like half a lifetime to those of us who are suffering w long covid, 7 years is not a long time in science to learn about an organism.. especially one that morphs as easily as covid does. The people I notice that have the most success with doctors working with them to find answers are the people who say they joined a concierge practice. I pay for health insurance and it's NOT cheap.. I am not going to cough up another 5 grand a year for health care.. but it sounds like in many cases because those doctors working in a practice that does not accept insurance have more time, the people who sign up see more results. Its so messed up.

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