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Long Covid Help/Hope in 2026?
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
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I have had many of the symptoms you describe, plus others I won’t list here. I was diagnosed with Post Covid Syndrome at Duke for covid I had in Sept 2023. I was also evaluated by ENT, Neurologists, Endocrinologist, Rheumatologist, Dermatologist, etc. Some of my issues were pre covid….still…I’ll just report what made a huge difference for my situation. To treat inflammation, my Dermatologist prescribed Hydroxychloroquine. It has changed my life. My pain and sore/tender muscles, tissues and joints are gone. I can’t say 100% that the med is responsible, but it’s the only change I have made. It’s surreal to feel so good. I still have some issues, but they are manageable. I just met with my Rheumatologist and she upped my dose. So….I am optimistic of the benefits it has for me bodywide. If inflammation is a problem, I’d discuss the med with your doctors to see if it could be an option. It may not be for everyone. It’s for Lupus, but I do not have Lupus.
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1 ReactionI 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!
This is a study that might assist your doctors. UCLA began research on ‘spike protein’ reservoirs in LC patients: https://www.sciencedaily.com/releases/2025/08/250811104235.htm Scientist were able to isolate 65 different spike protein fragments in LC patients in the study which appeared to be ‘stored’ in packages throughout the body. The reservoirs are called EVs.
Germany picked up the gauntlet and they are hard at work on identifying how to clear the covid fragments. https://www.mdpi.com/2076-393X/12/7/790
I discussed these studies with my doctor and then I asked the key question: Is my immune system trashed? A blood draw for a T-Cell study lead to the discovery that I had little to no T-Cell CD8 cells. CD8 cells ‘take out the trash’. When a cell dies or when a virus or bacteria cell is ‘blown up’ into fragments by the ‘seek and destroy T-Cells’, the body’s natural immunity CD8 cells safely transport the dead cells and/or fragments of diseased cells out of the body through the blood and then the liver. For 4 years, I had plenty of seek and destroy T-Cells and the lab work at the 4 year point in this journey showed they were fighting a big infection. For over 2 years, my sphenoid drainage was testing 'positive' for spike proteins but the doctors did not understand why. The sphenoid had become either the major storage organ or a replication factory for the left behind spike fragments. However, the drainage into my gut also caused major failure of my biome systems. When my body could not clear the fragments, they were left behind in my joints, muscles, the sphenoid sinus, my biome and my liver. At the 5 year point, my doctors were able to help.