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 wheezerplzr @wheezerplzr

Go on Recover Covid website and check it out. Also see Patient Led Long Covid website

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@wheezerplzr Yes, they are doing research currently and have webinars where the research panelists discuss the findings.

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Profile picture for vostie @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 I too thought LDN was my "miracle" -- I titrated up to 2.5 and felt great. But I got Covid again in January 2024 and I was back to square one with the debilitating fatigue and energy crashes. I went to Dr. Hurt at Mayo, Rochester. He said in their LC research, they found that LDN quits working in people who get Covid again. I still take LDN but still have crashes when I don't pace and get plenty of sleep.
Has anyone on her asked about new research results from Mayo Rochester?

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I encourage you to look at Howard Schubiner, MD treatment approach. He has a book as well as pod casts. His approach works for many.

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Profile picture for amyqk @amyqk

@vostie I too thought LDN was my "miracle" -- I titrated up to 2.5 and felt great. But I got Covid again in January 2024 and I was back to square one with the debilitating fatigue and energy crashes. I went to Dr. Hurt at Mayo, Rochester. He said in their LC research, they found that LDN quits working in people who get Covid again. I still take LDN but still have crashes when I don't pace and get plenty of sleep.
Has anyone on her asked about new research results from Mayo Rochester?

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@amyqk I was not aware ldn would stop working. My next thing to try is micro dosing GLP 1. Supposed to help with inflammation especially neuro inflammation. My doc did not consult with Mayo,

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Profile picture for ann728 @ann728

I encourage you to look at Howard Schubiner, MD treatment approach. He has a book as well as pod casts. His approach works for many.

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@ann728 Thank you Ann!

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Profile picture for vostie @vostie

@amyqk I was not aware ldn would stop working. My next thing to try is micro dosing GLP 1. Supposed to help with inflammation especially neuro inflammation. My doc did not consult with Mayo,

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@vostie what type of Dr.?

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I have found that only Concierge or direct care doctors will take the amount of time and it needs to work with a long Covid patient. They do charge you a monthly fee to provide care but spend tons of time with you and you can usually get in within a day or two. Mine consulted with a long Covid specialist whose practice was full and got a complete list of about 30 different treatments that we needed to try. Microdosing GLP one is next on the list for me.

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Yeah, my “health care system” has also latched on to LDN, because they don’t know what else to do - and I am glad that it has helped some people, most likely through its anti-inflammatory and modulatory effects on the immune system - but I have heard mixed results and side-effects. Even if LDN helps, it is, at best - a bandaid, so I am not surprised that it takes a while to work again, if at all, after active infection, etc.

For those trying the latest therapies - GLP-1, monoclonal antibodies, new/old antivirals (except for Paxlovid - has been proven not to clear viral reservoirs), please update us on your treatment and how you’re doing!

- Oly

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I developed Long Covid January 2024. While I had many of the usual symptoms, my worst was that I slept little because of stomach pain and digestive symptoms. Once I identified and avoided my nonIgE food sensitivities, I improved dramatically on those symptoms. I had mild hand osteoarthritis and it quickly advanced to the point where I could barely use my hands. I did not initially think of this as Long Covid related and proposed a trial micro-dose of Sirolimus (starting at 1 mg and titrating up by 1 mg per week up to 5 and staying on that for 9 weeks to my doctor. She approved and when she reexamined my hands, I would say 80% of the pain was gone. I do not know how much of the hand joint pain was due to Long Covid vs OA, but she enthusiastically agreed to keep prescribing Sirolimus (rapamycin). My hand pain is now almost nil though I have less hand strength than I used to have. I am now micro-dosing tirzepatide. I would say that is perhaps mildly beneficial for me but so far I can’t take more than a very small dose before serious digestive side effects kick in. I have just started LDN at a very low dose. I am not well, but am vastly improved and looking for more answers. I have not been able to find a Long Covid doctor, but have found the wealth of information online, especially that shared by other patients, incredibly helpful. Since nothing has really worked in RCT trials, I have focused on what is currently in trials at major universities (eg. Tirzepatide, and after I was already using it, I saw Sirolimus was being trialed at Mt. Sinai) and meds that are commonly used in major Long Covid centers (LDN). I also tried two different H1+H2 blockers but reacted badly to both combinations and am now trying to determine if my reaction to them may indicate my Long Covid might be initiating Sjogrens. I still lack energy, have elevated d-dimer, some minor autonomic symptoms and my hsCRP and other blood tests have either not returned to my personal baseline or are abnormal.

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