Warren Togami

LC since 2022. Founder @fedora Linux. ex-Red Hat. ex-Blockstream.

[Warren Togami @wtogami]

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.
https://t.co/Y3U7zvU5Ez

- 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.

https://t.co/Y3U7zvU5Ez
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.

[George Panos Tsiolis @gptsiolis]

It looks like we will all be on some dose of a GLP-1 sooner than later. More and more incredible non-weight related benefits are being discovered as clinical studies continue.

- Cancer progression is crushed
- Livers completely heal
- Cartilage regenerates in joints
- Powerful immune modulation

...and so much more...plus all of the benefits we've yet to identify.

[Salvatore Mattera @SalvMattera]

I looked into @AlanLevinovitz 's previous work and he does have this sort of template he applies in his writing. The ironic thing is that I believe he could have written a great article about neglected illnesses and the people who have them using that template.

Much of the community does have cult-like structure to it, with in-groups and out-groups, sacred beliefs, rituals, high priests, and language games. It's something I've written a lot about myself, and I think it often gets in the way of real solutions.

But he's so Long COVID-phobic, he ended up shilling for what's arguably the worst cult in this entire space.

Brain retraining isn't just cult-like - it is the literal definition. Charismatic leaders with origin-stories. A sacred doctrine (your body is fine, it's your nervous system's fear loop) that can never be wrong; that can never be disproven. Testimony as the central ritual. Paid initiation and a pipeline that turns the converted into evangelists who recruit the next crop of disposesed. Apostates that get kicked out. A religion scholar could have written the definitive story; instead, he got himself baptized.

[Joseph Mallozzi 🏴‍☠️ @BaronDestructo]

Sadly, it's true. Amazon has elected not to move forward with the new Stargate series.

There's not much I can add beyond confirming what's happened. But I will say this...

Creator Martin Gero developed a new Stargate series over two years, ultimately crafting a show that offered a fresh jumping-on point for new viewers while deeply respecting existing canon. It was a series that avoided the pitfalls of several modern remakes and reboots by fully embracing the core of its predecessors: action, adventure, exploration, wonder, heart, humor, and found family. And based on that creative vision, the new Stargate series was greenlit in November of 2025.

As of today, officially, that original vision is no more. We'll never get the opportunity to introduce you to that world and those characters - or reintroduce you to, and check in with, some familiar faces from the past.

My heart breaks. For the incredibly talented writers who worked tirelessly to bring this show to life. For Martin who maintained an unwavering positive outlook throughout despite the challenges, and who always strove to make a show that would honor the fans while welcoming a new audiences. And for the long-suffering Stargate fandom who waited so long and came so close to getting a show they truly would have loved.

[Warren Togami @wtogami]

@MichaelShanks I was looking forward to Stargate produced by many of the same people who created the original series. This is deeply disappointing. Continuation of the existing timeline with resolution of those old plot threads is exactly what I wanted.

[Michael Shanks @MichaelShanks]

I’m gonna simply say this: if you are at all interested in a Stargate show with ANY of the original creators/performers involved, now is the time to say something. Otherwise it really will be the end of that chapter forever. Let them know you are THERE

[Froglet 🐸 @froglet80]

"Not like HIV"
"There is no Long Covid"
"PAIS"
🤣

Meanwhile, SARS-CoV-2 gave me persistent CD4 lymphopenia with atypical latent viral reactivations & opportunistic infections colloquially referred to as "AIDS defining illnesses"

Oh yeah, and Biktarvy seems to have saved my life. But that makes me inconvenient to reporters I guess.

[Amy Mitchell @amymitchellart]

@froglet80 @WIRED Same @WIRED talk to me... if you want to talk about long COVID patients who responded to mind body therapy, then maybe you should discuss the other side more thoroughly- those of us who have responded to antivirals.
I have documented lymphocyte deficiency and recovery:

[Froglet 🐸 @froglet80]

Hey @WIRED
Want to try real journalism? I'll talk on the record, and give access to my medical records. Hell its all been posted here anyway. Persistent CD4 lymphopenia that was not present before SARS-CoV-2 infection and does respond to antivirals.
I dare you to cover it.

[Warren Togami @wtogami]

@MykhailoRohoza It took so many takes to get the burning jet to pose for that photo.

[Warren Togami @wtogami]

@James6939710330 @zeynep @AlanLevinovitz @MeganTStevenson This isn't inability to discern legitimate sources. This is deliberate bad faith pushing an ideological agenda. The most impressive part to me is the complete lack of shame.

[Republicans against Trump @RpsAgainstTrump]

New statement from Scott Pelley:

“Last month, 60 Minutes lost its DNA when our entire senior leadership and two of our best on-air correspondents were cruelly fired without cause. Good people were silenced because they stood up for our audience. They stood for fairness against the forces of political bias; they stood for professionalism against chaos.

For my part, new management has instructed me to inject falsehoods and bias into a politically sensitive story. I’ve been told to include assertions that are unverified. To date, in every case, I have managed to ignore these instructions or refuse them. Recently, politicians have been invited to choose correspondents for interviews on the broadcast. Giving politicians control over 60 Minutes interviews is not how this is done. Finally, incompetence and unprofessionalism in the new management have wreaked havoc. In a case involving one of my stories, the entire program came within 19 minutes of not getting on the air at all.

At 60 Minutes, we have fought harder than anyone knows to save the program that became an American icon. We owed that to our millions of viewers. I am deeply moved by the thousands of wishes we have received to “keep up the good fight.” Most of the men and women of CBS News are still in that fight. But now the collapse of values at the top has become untenable. The leadership of 60 Minutes is no longer recognizable. The principles I hold dear are gone, and so I must leave as well.”

[Warren Togami @wtogami]

Since this fake disease is entirely in our heads we don't need to worry about this.

[Warren Togami @wtogami]

One of the drawbacks of denying a problem exists is you can't warn against this entering the blood bank supply.

[Christiansen @LeneCch]

In vitro study: IgG from #MECFS and Post-COVID patients can enter endothelial cells, bind to mitochondria, and induce fragmentation linked to impaired cellular function.
#proteomics #immunology
https://t.co/QRZSlGFgKT
(Pic: Professor B. Prusty, Rīga Stradiņš University, Latvia)

[Salvatore Mattera @SalvMattera]

@tylerblack32 Please research brain retraining for yourself. This is not legit therapy or SSRIs or anything even close to that. It is a predatory alternative medicine scam

[Taylor Lorenz @TaylorLorenz]

@awaisaftab @AlanLevinovitz As someone who actually reports on this stuff, no it’s absolutely not. The people quoted include several very well known grifters pushing anti science MAHA claims and the whole piece is riddled with pseudoscience. It’s an insanely irresponsible and harmful piece.

[Warren Togami @wtogami]

@WarMonitor3 What does North Korea get out of sending aid to a soon-to-be-bankrupt basket case?

[Arijit Chakravarty @arijitchakrav]

@AlanLevinovitz @WIRED What a bizarre piece of writing!

There are literally hundreds of basic science papers on the molecular mechanisms behind long covid- with concrete biological changes documented.

Given that you lack a medical & scientific background, what motivates you to write stuff like this?

[Danielle Beckman @DaniBeckman]

Hey @WIRED, how about interviewing neuroscientists who are actually studying the brains of people with #LongCovid? I'm available, and so are many others in the field.

"When the brain gets stuck in a feedback loop of fight or flight" What does that even mean? #Pseudoscience

[Warren Togami @wtogami]

The "journalist" for WIRED was acting in bad faith to push an ideology.

[Megan Stevenson @MeganTStevenson]

Turns out I was featured in this very dumb article about long covid. And the guy lives in my small town and didn’t even reach out to ask for my perspective! Just sent him this email.

[Duane Storey @DuaneStorey]

I received my day 21 RNA seq back yesterday and ran it through my pipeline. I'm not going to deep dive it too much until the end, but I'll just share a few interesting things.

My protocol started with sofosbuvir, daclatasvir, biktarvy, plus high dose thymosin alpha 1. Sof/Dac is a Hep C medication that can in theory target the RdRp of sars-cov-2. Biktarvy was chosen because it can suppress LINE1 which might help with HERV/RE elevation, which I've noticed in my blood. And TA1 was chosen because it helps increase thymic output, which should help T cells differentiate.

I spent a lot of time thinking about this protocol. I think the problem with antivirals alone in long covid would be you are removing the antigen on top of an already broken immune system. And using TA1 on its own might help T cells improve, but if the antigen burden is too high, it would be like spraying water on a large fire, largely ineffective. So my reasoning was that both would be needed - augment the immune system at the same time you're dropping viral load. Let the immune system then finish the job the antivirals have started.

The transcriptions themselves between day 0 and day 21 haven't changed in super meaningful ways, certainly not enough to say it was obvious what was going on with the antivirals. But I actually didn't think I would see much effect in these first few weeks, I just wanted to set a baseline before I added the other antivirals.

What did happen though is I saw massive T cell expansion and improved class switching. Here are some rough metrics - total clones increased 2.17 times, the diversity metrics have improved (I have a much broader response pool now), both TCR and BCR diversity has improved. Basically I had a very contracted clonal pool on day 0 that has started to resolve by day 21.

[Warren Togami @wtogami]

@DuaneStorey I too felt an acceleration of weight loss recently despite no change in dose. I find myself needing to force myself to eat on a schedule because I otherwise forget.