Long COVID Status Update 2025 Dec 22
Symptoms Summary
* Severe since 2022: Brain fog, PEM, PENE. During 2022 I was bedridden for 6 months. I could barely walk down a flight of stairs, felt unsteady and unbalanced. Could not read or copy a 7 digit phone number. Brain was severely malfunctioning to the point where I struggled to form sentences. Driving was dangerous.
* Some improvement 2024: Feel chronically ill. Thinking is difficult. Brain fog in and out. Physical exertion is punished. For example assembling this IKEA furniture took me ~2 days of effort followed by 3 days of PEM crash.
* POTS: Maybe moderate? I am not terrible most of the time but briefly exerting at odd angles like to pick up kids makes me dizzy. Full on tilt table test makes me feel VERY BAD for 2-3 days.
* MCAS? Not sure. Many of my symptoms get worse if I stop my antihistamine medications. Hydroxyzine seemed to be the most effective but I had to stop it recently due to drug interactions. Currently on the much weaker loratadine.
* Chronic prostatitis. Started at the same time as LC back in 2022. Crippling pain. Inflammatory something caused tissue to obstruct leading to BPH.
* Complex autoimmune changes
2022-2023: CCP IgG positive suggests RA. I received some symptom mitigation from hydroxychloroquine. By 2025 CCP IgG disappeared but I became ANA positive instead.
Treatments that didn't work
- LDN, long duration Paxlovid, Adderall, Metformin (drug interaction)
- rapamycin - sort of works but causes problems over time. This again feels like a clue mitigating downstream problems not the upstream cause.
- splenic nerve stimulation - This was an interesting failure! It caused a WONDERFUL FEELING OF TOTAL RELAXATION as the brain-on-fire went away entirely. For 18 hours I felt great. That was followed by symptoms coming back ... then slowly I felt sicker and sicker. It is known to reduce cytokines. I think it causes temporary immune compromise allowing for viral activation. Two weeks later I was symptomatic and tested positive for COVID on a home antigen test.
That was an interesting and spectacular failure. I intend to try it again in combination with the combination treatments described below.
Treatments
- November 2023: hydrogen inhalation mitigates my brain-on-fire symptoms every time.
Hypothesis: cancels out reactive oxygen in all cells in your body, temporarily mitigates problems with damaged mitochondria. This is definitely a downstream mitigation but not addressing the upstream cause.
Unfortunately the effects wear off after only a few minutes. It isn't a solution, more of a clue, but it is at least something I can use to cope during a heavy PEM crash.
I should write a thread exclusively on the topic of hydrogen inhalation for LC/ME.
- December 2024 azithromycin caused significant symptom improvement for 1 month. Temporary improvement to brain fog and PEM, and temporary near remission of prostate pain. The effect stopped working so I discontinued. I have to wonder if long-term antibiotics might have been the cause of autoimmune biomarkers changing over time.
- July 17th 2025: 1st Pemgarda. See my other thread.
nitter.app/wtogami/status/1946097…
- October 3rd: brain fog was very bad. Two days after Novavax brain fog improved a lot and stayed that way for two weeks. Unfortunately it feels like brain fog might be a separate thing from cognitive dysfunction. Exertion still caused neuro crash and inability to think.
- October 22nd: Started val/cel combo. Val alone seemed to improve my PEM baseline 30%. Cel seems to be reducing inflammation a minor amount. Honestly not sure what cel is doing but sticking to it because of the Pridgen Protocol. GP is concerned about the long-term GI risks of that high cel dose.
I didn't randomly decide to try val/cel. My labs this year on multiple occasions have read high EBV IgM which suggests dormant viral reactivation. Valacyclovir is not targeted at EBV. My guess is multiple other dormant Herpes-family viruses are reactivated at the same time. ID doctor wanted me initially to try valganciclovir which is targeted against CMV. I decided to try valacyclovir first because of excellent safety profile (no black box warning). Whatever val is doing seems to be suppressing a major portion of a persistent infection.
I still feel constantly ill. Ability to think has improved by 30% on a sustained basis which is a lot better than past years. That might be due an improved my PEM baseline. I'm not sure. I tried to play catch up with years of defferred maintenance, overdid it and caused a neuro crash for a few days.
December 4th: azithromycin again mitigated both neuro and prostate symptoms.
- Very Soon: 2nd Pemgarda
The Pridgen Protocol trial suggested better results for those who took combination Paxlovid during a portion of the long duration val/cel. In my case I'm combining long duration val/cel with Pemgarda and Paxlovid.
nitter.app/wtogami/status/1946097…
My previous Pemgarda didn't yield lasting improvement. I had some serious problems like heavy drug interactions with the combination antiviral. This time I eliminated all meds that conflict with Paxlovid. I'm refusing the pre-medications that interfere with my ability to feel what effect if any Pemgarda is doing to me.
- Biomarker Monitoring
I'm periodically getting freezing blood/serum/plasma vials before each big treatment. If a big change happens after a treatment then analyzing before and after vials may help to figure out what changed.
Future Stuff I want to try
1) Microdosing GLP-1. No reason not to try this. I previously could not try because it had a dangerous interaction with those same meds that I can't take with Paxlovid. But after elimination I can try both this or the milder Metformin again.
2) I'm interested in antiretrovirals where some people had success like with Maraviroc.
3) I am intrigued by the anecdotes coming from the Anktiva LC trial. I have now begun monitoring biomarkers to help determine if I am a good candidate for these immune modulating treatments.
I have been substantially disabled by Long COVID since 2022.
Received Pemgarda infusion July 17th, 2025 after reading a few anecdotes of it helping other patients. Also read it did nothing for others. I will be posting my daily progress and answering questions in 🧵 below./1