Long Covid Help/Hope in 2026?

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!

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.

@vostie please, what is LDL? I had Covid in 2021 and hospitalized for 3 weeks. I am not the same and share so many of the symptoms. You have or had. I am practically bed ridden with fatigue, now Vertigo. I have tried functional medicine with little relief, but continue to seek help. Thank you

@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.

@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

@diverdown1 yes, I see baricitinib keeps coming up in trials too - you’re talking about the JAK inhibitor, right?

Hi - Is the consensus that LDN just treats symptoms and if you stop are you right back to LC symptoms? Or does LDN actually get rid of LC altogether?

Thanks

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

@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.