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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 am sorry you have had a hard time of both covid and kaiser.
my LC was diagnosed outside of Kaiser by a functional medicine doctor.
at the time Kaiser was not acknowledging the existence of LC.
my primary gave me access to dr. nerves, dr. gut, dr., dr. heart, etc. i got everything but a diagnosis. i was persistent…
covid gave me fatigue, internal tremors, small fiber sensory neuropathy, and high blood pressure. kaiser fixed the blood pressure. for a time when my energy was non-existent, LDN helped a lot.
dr. Quon put me on an anti-histamine protocol for the tremors as the first level treatment. it worked for a year, until my body decided that it had enough H1. my internal tremors are pretty much gone now. so it is possible the H1 and H2 protocol worked, or time made it better. my blood pressure is under control with drugs. the SFSN remains, will continue to remain and is untreated.
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1 Reaction@oly78 I am not with a healthcare system. I've been treated by a total of 10 different doctors over the last 6 years in 5 different states, from GP and emergency room doctors to neurosurgeon, allergist, 3 different ENTs and gastroenterologist. Even an oral surgeon was brought in by my dentist for the tongue swelling and loss of taste and smell. I read everything put on line by Dr. Ardis and Dr. Bruce Patterson regarding immunity serological testing . It was Ardis and Patterson who provide me with research to ask my PCP: Is my immune system total trashed? Ardis and Patterson research also gave me the courage to contact Lab Corp about tests they were doing to isolated LC and how I could give the blood test information to my PCP to order the tests. That is how my PCP solved the T-Cell dysfunction mystery. I paid Lab Corp direct, PCP ordered the lab, results sent to PCP. I was tested for severe microvascular endothelial dysfunction and T-Cell dysfunction because I presented most symptoms for both in this extremely informative National Report: https://pmc.ncbi.nlm.nih.gov/articles/PMC8233978/
Things really improved when my dermatologist who is a LC sufferer told me in detail what labs would help identify if I was having an allergic reaction to the spike protein. This proved to open doors to answers. I selected one from 3 different ENTs, each ordering new tests: CTs and MRI of my head. They all saw the same 'swollen' sphenoid, but only one ordered micro surgery to determine what it was. Every time I met a new specialist I asked them up front if they would be 'willing' to read my extensive research and labs to decide if they would work with me as their patient based on the medical records I brought into the exam room.
I've shared research here in the LC group for what European doctors are doing to find answers and what the National Institute of Health in the US is focusing on for solutions. Sufferers present differently for symptoms. I focused on inflammation causation but never lost track of the specific symptoms that developed over time and documented everything. That helped the doctors.
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4 Reactions@pattig09 —
I love your approach:
- Doing deep research and presenting the research findings to prospective doctors.
- Getting many tests done, to create a complete picture to present to doctors.
- Screen potential doctors to find ones that will take the approach that you want.
I’m doing deep research on LDN, and will present findings that endorse its use to my PCP. She can then share the findings with relevant specialists in our health system whom she might want to consult.
You’ve provided a valuable example for others to follow!
~ friedrich
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1 Reaction@pattig09
As you mentioned the latest most promising research is endothelial dysfunction and T-Cell dysfunction, leading to these chronic spike proteins after Covid that wreck havoc in all kinds of ways in different people. I would be very interested if you could share more information on what your tests found and what the doctors are recommending for possible treatment/protocols to shed these spike proteins?.
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1 Reaction@dido2 Micro surgery discovered the spike protein fragments had taken over my sphenoid cavity, blocked my malefactor sinuses left and right and completely clogged my turbinate, left and right. This was a very complex micro-surgery to protect the sinuses while cleaning out the covid remnants. It took a year to recover after surgery with twice daily cavity flushing. The goo that was taken out tested positive for covid in the labs. T-Cell Dysfunction/Exhaustion labs revealed the exact cell that had been destroyed by the spike protein in my body. Treatment options related to my specific T-Cell dysfunction to heal my immune system took several paths, all focused on my labs. It was exhausting to determine 'what' had been left behind and not cleared by T-Cells and 'where the remnants had been deposited throughout the body in order to purge remnants.
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. 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.
German scientists are working to identify how to clear the covid fragments. https://www.mdpi.com/2076-393X/12/7/790
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2 Reactions@pattig09
Thank you so much for the resources. I've got some reading to do.
@dido2 The Tevogen Bio’s TVGN‑489, an allogeneic cytotoxic T‑lymphocyte therapy targets SARS‑CoV‑2 antigens broadly (including but not limited to spike), has been studied as a therapeutic avenue for persistent viral reservoirs. (reservoirs throughout the body but on the brain and the gut).
Have you heard about the SPEAR group? This involves monoclonal therapy. https://investors.invivyd.com/news-releases/news-release-details/invivyd-and-leading-researchers-form-spear-spike-protein
Here is the link to Tevogens latest clinical trial. Too bad there currently are no more trials to further these findings and move towards a treatment option. Looks like they are more interested in boosting their stock price with news releases, then gain it takes $ to continue to FDA approval also.
https://tevogen.com/press-release/tevogen-bio-announces-publication-of-positive-phase-i-clinical-trial-results-for-tvgn-489-in-blood-advances/
No have not heard of the SPEAR group, I'll look into them,
Thanks
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1 Reaction@dido2 Scientists work on the CD8+ T-cells benefited my healing. National Institute for Health published a detailed medical analysis of the T-Cell to advance the science into action in some medical arenas: https://pmc.ncbi.nlm.nih.gov/articles/PMC7574860/ Tevogen seemed to have a goal to create a new vaccine. Perhaps they didn't advance the science, but more curious medical professionals like a few I've found have used the trial data and joined in healing processes. I'm thankful solutions for options of monoclonal treatments and peptide treatments to help me improve.
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1 Reaction@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/