Warren Togami

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. x.com/wtogami/status… - 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. x.com/wtogami/status… 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.

@RogerSeheult @veryvirology Fatality it turns out was not the most costly part of COVID.

@veryvirology Covid had a CFR of <1% A walk in the park.

Let’s pretend there’s a drug solution for a virus pandemic with a 30% case fatality rate. Would any sort of supply chain survive to deliver it? Would there be hoarding and a black market for this drug? Would there be scams that would imitate this drug? As a result, would there be inequalities and drug distribution? Organized crime? Remember this drug could be the difference between life and death. Many people would die and be afraid to go to work. Pharmacies closed Perhaps even looting an anarchy The government would be unable to control the anarchists. If you were able to get the drug people would just take it from you. This is the reason why I have focused on easily obtainable, non-supply chain, dependent interventions freely available at the end user. I am frankly surprised at people who put ALL of their faith and trust in interventions that have to be centrally manufactured. Sometimes outside of their own country of residence. So why aren’t people learning?

@Petrroll I would love for the time to setup my own pipeline but in this case another did most of my RNA analysis. I hear Claude can generate similar given the right inputs and prompts.

@wtogami hi, I was wondering how you fed antics results to LLM. Just their .MD export or do you some processing? Do you feed it hierarchically by subgroup and extract findings and combine those or one large context? *Very* interested in your system / approach / prompts.

Excited to announce our results from the first ever survey on GLP-1s for Long COVID and ME! Patient outcomes showed two extremes: while 53% improved, 28% experienced worsening, some long after their last dose. Full analysis here and in the tweets below: lcmedata.org/treatments/glp…

@liamsLCjourney @SKaktus_ This is important ... it took me like 2 months to complete the Amatica survey. 😢

@SKaktus_ Unfortunately no, now realizing that would have been a good addition. We were trying to balance keeping the survey short so severe patience could participate easier

Fascinating insight into GLP-1 outcomes, especially the impact on PEM, notoriously treatment-resistant Potential contributing mechanisms could include: - Vagal afferent and brainstem modulation - Mast cell stabilisation - Microglial M1→M2 repolarisation Among others

@DuaneStorey @fedupguineapig @deborahbrian People are expressing outrage as if the world is fair. The world is not fair.

Most people with ME/CFS or LC that I know are tough as nails, they have to be. I don't understand this need to frame everyone like fragile flowers who shouldn't be allowed to spend our own money or support new initiatives. It's like they think they need to hide all the tide pods when the LC person is around so they don't eat them out of desperation.

It's "unusual" to charge because typically if researchers can't get funding they just cancel the research. Would you rather people pay to contribute or the research just not happen? I paid to take part in Attomarker's mab treatment study for the same reason.

People are just sour. I posted about Amatica in an ME database and science group and a lady said it’s appalling and offensive to post that, because not everyone can afford it, some are poor. I told her, in what world does people’s feelings matter more than science progression. Those of us who can’t participate in studies because of inability to travel, maybe we should advocate for the cancellation of all those studies because it’s rude! Like no

@fedupguineapig @deborahbrian There is nothing unethical about this. Let's not entertain the idea when it's simply wrong. I also don't want my right to enter into voluntary contractual agreements to be taken away because somebody thinks it's "evil".

@deborahbrian Interesting perspective. This illness has a lack of research funds. So I don't care if someone thinks it's unethical to fund something this way. I'd rather pay 'unethically' than do nothing and remain sick. The world isn't perfect. Plus people can spend their money freely.

@HawkWolf556 @bejmorri @slye I only report what I witnessed myself. I also saw a Youtube video of The Build Show where they talked about modern building codes requiring far tighter leak envelopes than a decade ago to improve energy efficiency. They have a test where they measure pressure/leaks at a door.

@wtogami @bejmorri @slye Haven’t seen data on that. Which is what I asked for… Data

Most HVAC contractors in America are trying to keep you in the 1990s. I had $15,000 cash to spend on a cold-climate heat pump. Nearly every contractor I contacted tried to talk me out of it or over-quote me an outrageous amount to deter me away. One guy spent 20 minutes explaining why variable-speed heat pumps are a scam. Another literally said he wouldn’t put one in his own house. Why? My guess: 1) They are ignorant of the latest technology 2) They don’t have the training to install/service the new systems 3) Their pockets get filled from big box old school HVAC manufacturers if they sell them Unfortunately, a new HVAC for most homeowners is very urgent so these contractors use this time crunch to overcharge or upsell inferior systems. Luckily, I bought a couple of $130 window AC units to hold me over for 2 weeks while I reached out to 15+ contractors. I received quotes ranging from $10,000 to over $24,000. Only 2 of the quotes included a modern cold-climate heat pump. After price matching and negotiations, I ultimately chose a Daikin Aurora Fit cold-climate inverter heat pump + 97% modulating gas furnace (true dual-fuel setup) Total cost after rebates = $13,000 This system usually goes for around $20,000. Here are the key takeaways I wish I had known before I started shopping: 1. Always demand a real Manual J load calculation. Don’t settle for a “rule of thumb” or register count. I had 3 different contractors give me 3 different sizes until one actually ran proper software. 2. True variable-speed inverter technology is worth it especially in a multi-level home. It runs longer at lower speeds, gives much better dehumidification, smoother temperatures, and is noticeably quieter. 3. Dual-fuel (heat pump + high-efficiency gas furnace) is often the smartest move in mixed climates (like my home in Louisville). The heat pump handles most of the year efficiently while the furnace only kicks in on the coldest days (if necessary) 4. Shop aggressively and negotiate hard. Buy yourself some time with some temporary/portable units. I got competing quotes and used them to drive the price down significantly. 5. Duct sealing, correct sizing/tonnage, and proper installation matter more than most people realize especially in older homes. 6. Have a detailed checklist to vet each contractor. An extremely helpful guide I had throughout the process was from @energysmartwv So why did I insist on cold climate heat pump? • Way better temperature balance upstairs (even without zoning) • Excellent dehumidification in humid summers • Significantly quieter operation • I’m expecting to save $60/month on electricity • Less reliance on gas and possibly eliminating the need altogether Modern cold-climate heat pumps are no longer experimental. They’re one of the smartest upgrades most homeowners can make right now. Do your homework to make sure you are getting the best system possible for your home. Don’t let old school contractors keep you in the past. Have you installed (or considered) a heat pump in a cold or mixed climate? Were the contractors helpful or did they try to talk you out of it?

@ClareCraigPath I agree hundreds of millions should be inconvenienced instead of a few dozen.

It is terrifying that they are pushing the ideas of "super spreader events" and "asymptomatic transmission". It is all based off one study which showed clusters of infections - but totally failed to exclude coincidental environmental exposure. Why is this treated as gospel?

I took NAC on and off for years for glutathione support especially cold/flu/COVID. I never felt anything except the first time I tried glyNAC-ET. I felt a huge rush where systemic inflammation reduced and I suffered insomnia. I don't know if that was from the first time trying glycine or NAC-ET being far more bioavailable than NAC. Subsequent doses of glyNAC-ET had far less noticeable effects. Possibly related: My RNA seq suggests significant dihydrolipoamide dehydrogenase (DLD/E3) deficiency. If true that would impairs a few things including glycine cleavage. x.com/i/grok/share/8…

@wtogami Yeah NAC is a strong one I dabbled with 2,4gr per day for a while with food, never felt something But also never took it without food, which you would if you use it for biofilm

Combining biofilm disrupters with metal chelators is pretty powerful Microbiota depend on heavy metals liek iron, calcium or copper for their biofilms If you combine systemic enzymes, take them with lactoferrin so that the enzymes can break down the biofilm and the lactoferrin binds excess iron, essentially starving the bacteria/ funghi of it Another all in one solution could be MCP, which directly binds to metals but also adds as a biofilm disruptor Potentially also lowering red meat around the timing of such interventions could be small but good changes

@yurikageyama I want to buy it for the novelty.

Today I bought Calbee chips at a convenience store, and the lady at the cash register said: “Are they really going to make these black and white? Everyone is waiting because of the mass media reports.” I nodded in agreement and did not tell her I was mass media, too, and I’d sent the story to half the world population as an @AP reporter.

Almost no one reading this needs to be worried about catching hantavirus tomorrow. But every person dealing with this outbreak needs to be on 100% vigilance with utmost best practice. Most people: don't need to be concerned. Experts: need to be extremely concerned.

World Health Organization director general told @nytimes that officials emphasized close contact as the way hantavirus spreads to avoid panicking people over occasional instances when transmission occurs without close contact. He said @WHO did not rely on the study of the 2018 Andes outbreak because it had not been "replicated." The virologist who conducted the study disagreed, saying their paper defines what the virus can do under favorable transmission conditions and public health guidance must account for this.

@HawkWolf556 @bejmorri @slye Apartment with minisplits. The bedroom gets above 4,000 ppm CO2 at night. Living room above 2,000 ppm during day. ~2007 construction house with central air: 1,500-2,000 ppm and gets stuck there for weeks. ERV brought that down to 600-800 ppm. Newer houses are sealed far more.

@wtogami @bejmorri @slye I would appreciate some additional info on the CO2 issue. Most homes are "leaky" enough that CO2 shouldn't be an issue. Even with the "standard" HVAC, it would seem this problem would arise, as all of them recirculate air in the house?

@Biff234523 @ShionogiUS I want Ensitrelvir approved in America. I just don't know where this "more potent" idea came from that seems to be repeated by everyone today.

Are you sure it is "more potent" than Paxlovid? It failed the SCORPIO-HR phase 3 trial then they pivoted to this prophylaxis niche. For sure it is safer and fewer dangerous drug interactions than Paxlovid. But they would have gone for full approval to treat acute COVID like Paxlovid had the trial succeeded. I have my own combo anecdote. I had Ensitrelvir prescribed to me in Japan, then I used a long duration with Pemgarda. That left no lasting difference to my LC baseline. Later that year I repeated Pemgarda with long duration Paxlovid. The drug interactions were miserable but it seemed to make a lasting difference. x.com/i/grok/share/5…

💊🧵 Thoughts on Xocova/Ensitrelvir, the drug that everyone is talking about today after Nature recently described it as “a pill that can prevent COVID after exposure to infected people.” For starters, none of this data is new. @ShionogiUS published topline data for SCORPIO-PEP, the trial showing that Xocova is beneficial in post-exposure prophylaxis, in March of 2025: shionogi.com/us/en/news/202… Yesterday, the full peer-reviewed results from the SCORPIO-PEP trial were published in the New England Journal of Medicine, which is why everyone is suddenly talking about them: nejm.org/doi/full/10.10… After that data was released in March 2025, Shionogi then submitted applications with the Japanese government and with the US FDA for the indication of post-exposure prophylaxis: shionogi.com/us/en/news/202… In Japan, this drug is not new at all. It has been approved for the treatment of COVID-19 since 2022. And, 2 months ago in March 2026, Japan did indeed issue approval for that indication of post-exposure prophylaxis: shionogi.com/global/en/news… For @US_FDA , the decision date that they have set is coming up next month, on June 16th. In my view, we’re going to need all the help that we can get to push this approval through, because the FDA offices that will need to issue an approval are currently in complete turmoil: • Earlier this week, Politico announced that FDA commissioner Makary is resigning, and will be replaced by acting commissioner Kyle Diamantas: politico.com/news/2026/05/1… • The FDA’s Center for Drug Evaluation and Research (CDER) is now led by Tracy Beth Høeg, one of the worst anti-science hacks that this administration has to offer. Just last week, it was widely reported that she personally got involved against Sanofi’s type 1 diabetes drug in a disagreement with staff: biospace.com/fda/sanofi-req… • Within CDER, the Office of Infectious Diseases (which Xocova approval goes through) currently has no director - Adam Sherwat left the FDA last month: statnews.com/2026/03/18/fda… If you would like to help urge the FDA to approve Xocova, there is an active petition you can sign here: change.org/p/urge-the-fda… Now, what exactly is Xocova, and what is it capable of? When you strip away the flashy headline from Nature, Xocova is the same class of drug as Paxlovid - a 3CL protease inhibitor. It’s just essentially a “2nd generation” version. It’s a very encouraging step up from Paxlovid, because it’s very obviously a bit more potent, it comes with slightly less side effects, and it also has less drug interactions. That’s all great, and those advantages highlight why it’s important to get this on the market. It’s going to be good for lowering viral load during an acute infection, if taken within the first couple days of symptoms, but probably still not very helpful at preventing long-term damage or Long COVID. Just like Paxlovid, it’s going to be an important part of polytherapy for Long COVID driven by viral persistence. The issue there is that you need a longer course of these antivirals than most physicians are willing to prescribe, and most insurance companies are willing to cover. And it’s not effective as a monotherapy, you need to pair these oral antivirals with other therapies for better coverage (eg. monoclonal antibodies and Novavax, and potentially even a 2nd antiviral like Remdesivir) And, indeed, as Nature points out, it does appear to be somewhat beneficial for post-exposure prophylaxis, reducing COVID incidence from 9% to 2.9%. This initial data is encouraging that Xocova could potentially be another Swiss cheese layer / tool in our toolbox, but not a game-changing silver bullet. Notably, nobody should really be expecting to use or rely on Xocova in a way that they wouldn’t be open to using or relying on Paxlovid in the present.

@amymitchellart @US_FDA Since it would not be approved for acute COVID, I wonder if the price would be lower. Prophylaxis is needed far more often so it would be impossible at Paxlovid-like prices like $1,500.

The best time for @US_FDA to approve ensitrelvir was 2022 when it was approved in Japan. The next best time is now! We need an alternative to Paxlovid and this is a good one. For risky events, travel, and medical procedures, having ensitrelvir available could open up possibilities that have been too dangerous due to COVID til now. I had a vaccine on Tuesday and the likely sick pharmacist coughed all over me- even that should be reason enough to take PEP (post exposure prophylaxis). For too long, we've had to wait to treat COVID until we're symptomatic and test positive, which is late into the infection.