In case you were wondering about COVID reactivating latent viruses....

I got bloodwork done yesterday after having Covid earlier this month (and developing cold / canker sores in my mouth).

I had never had them before. "HHV (Herpes) reactivation was considered a positive polymerase chain reaction result taken at the time of COVID-19 infection."
pubmed.ncbi.nlm.nih.gov/36880642/

What if I told you there was a simple OTC that you could take during acute COVID that could help prevent a cytokine storm?

What if I told you there weren't more studies because the government won't fund the research because of... optics?

That thing is nicotine.

True story. No one is suggesting taking up 🚬!!!

One week on a nicotine patch.

Early papers from 2020 make the connection.

Since then? 🦗🦗🦗

I wonder why 🤔

Welcome to Covid 101 (Season 2024)

@NickGuthe and I both got Covid.

I took Paxlovid for 10 days. He couldn't stand the taste and stopped at 5.

He tested neg for 5 days and is now sicker than before, testing strongly positive.

This is NOT a rebound. There is no such thing.

1/ This is the natural viral cycle of Covid that has been constant from the beginning:

Days 5-8 were *always* the danger zone.

You either started to recover or entered the cytokine storm that put people in the hospital and on vents.

2/

In February 2021 Congress gave the @NIH $1.15 Billion to study #LongCovid.

They decided to start with an observational cohort.

Recruitment started October 2021.

Recruitment status as of TODAY:

13,365 out of 17,000 adults
2917 out of 6000 peds

Where did the money go????

1/ In April 2021 @NIH put out a call to scientists to apply for trials (how things should work).

No applications were accepted and clinical trials were put on hold.

As of TODAY:

- no trial protocol has been completed
- no trial sites have been chosen
- no trials have started

2/

👉 Looking for some advice...

A 🧵...

From the beginning of the Pandemic @Survivor_Corps has led the way.

A few examples:

- Kicked off plasma movement in early 2020 (we saved hospitals and blood bankers a fortune b/c they never had to advertise. We did it for them)

1/ - Provided free and immediate access to Monoclonal Antibodies and other early Therapeutics through our portal GotCOVID.org (we did it way better and waaay faster than the US Government - they agreed)

2/

Let's revisit COVID testing.

Here's the story of my 14yo kid today... (his bff tested positive earlier today and they spent the weekend together)

1/ - 14yo presented with sore throat Monday. BFF tested positive = known exposure.

Tested negative on RAT (nose only)

2/

News of the study was welcomed by patients and advocacy groups.

“We have been clamoring for Paxlovid to be trialed, and it’s about time,” said Diana Güthe, the founder of a long COVID support group called Survivor Corps."
1/
thereporter.com/2022/11/21/cou… "Starting “in winter 2021, we noticed many long COVID patients experiencing a degree of symptom relief after vaccination, indicating there was viral persistence.”
2/

"Diana Güthe, is founder of SurvivorCorps, a grassroots community to help long-COVID survivors and doctors find answers."
1/
ktvu.com/news/stanford-… "She says she is encouraged that there is attention to long COVID research, which she and others have called for through their advocacy group.

"I had one of the first confirmed cases of COVID in the country in early March 2020," said Güthe."
2/

Finding patterns in the chaos of #LongCovid...

We surveyed 5,652 people with Long Covid (most never hospitalized with acute disease) and allowed them to chart their symptoms over time.

---> Onset of symptom clusters happened in a predictable fashion.
nature.com/articles/s4159… What was the pattern?

(1) cold and flu-like symptoms
(2) change in smell and/or taste
(3) dyspnea and chest pain
(4) cognitive and visual problems
(5) cardiac symptoms

I did a poll in Survivor Corps. 240 participants with #LongCovid.

80% had experienced new and unusual dental issues since Covid (teeth cracking, crumbling, falling out).

EIGHTY PERCENT. Time to add a dentistry to the mix. nytimes.com/2020/11/26/hea…

Fun fact: I was a professional photographer before COVID.

State of the World Winner - Kumbh 2019; px3.fr/winners/PX3/St… Kumbh Mela 2019.

The largest gathering of humanity in history.

📸: Me

Think you don't qualify for Paxlovid?
Think again.

Doctor says you don't qualify?
Don't buy it.

Check the qualifications and demand it. Know your rights. And have a plan.

Pass it on...

I’ve avoided social media today because, honestly, I don’t want to see any of your beautiful tributes to your mothers.

This Mother’s Day hits hard. Because it wasn’t my best year as a mother. Or as a daughter.

I can't imagine I'm alone. Although it feels it.

A thread...

1/ I’ll leave the mothering part to work out with my kids in private.

But here is the eulogy I gave for my mother in September…

In case any of you are also going through complicated times:

2/

This is what it’s like to get Paxlovid (if you're lucky)

* as a privileged white lawyer who runs the largest Covid movement in the world

A thread… 🧵 15yo (vaxxed and boosted) tests positive for Covid this morning and qualifies for Paxlovid.

1/

"The patients’ responses to vaccination “are a clue. They offer a breadcrumb trail to the possible biological mechanisms behind Long COVID,” said Diana Berrent, founder of Survivor Corps."
1/

Long COVID mystery: Do vaccines help or hurt? mercurynews.com/2022/05/01/lon… “People with Long COVID have been living in a medical desert. They are desperate for answers. They’re desperate for treatments. This will inform the next steps — coming up with treatments.”
2/

"People w/ post-COVID symptoms often know more about the issue than their healthcare providers, according to Diana Berrent, founder of Survivor Corps".
1/
Long COVID Patients Feel Gaslighted, Ignored, And Dismissed By Medical Professionals buzzfeednews.com/article/katiec… via @camerokt_ “Right now there’s a paucity of information and understanding around long COVID in the medical world,” Berrent told BuzzFeed News. “What understanding there is is on the patients’ side. Patients have become the experts.”
2/

"The National Institutes of Health is fumbling its first efforts to study long Covid."

‘A slow-moving glacier’: NIH’s sluggish and often opaque efforts to study long Covid draw...
#LongCovid @rachelcohrs statnews.com/2022/03/29/nih… via @statnews "This study “is a slow-moving glacier,” said Lauren Stiles, a former long Covid patient and a research assistant professor of neurology at the State University of New York at Stony Brook.“With a half-billion dollars, they could have run multiple clinical trials.”"
@Sci_Stiles

OMG. @RiseGardens customer service just called me after my tweeting at them re: customer service.

He asked me if there was a man in the house since I apparently didn't understand technology.

When I objected, he called me a "Karen' who "hasn't been laid in a decade".

😡😡😡😡🤬 The company just called me back to ask me on a scale of 1-10 how dry my vagina was.

I'm not even joking.

Boycott @RiseGardens and tweet your disgust at them. I have never... 🤯

The customer service guy's name is Windsor ftr.

Long COVID has nothing to do with the severity of the acute infection.

Full stop. When @Survivor_Corps looked at which symptom during the acute phase was most predictive of #LongCovid it was...

Wait for it...

Being ASYMPTOMATIC.

🧵 A quick thread on Citizen-Scientist Collaboration:

Make sure patients have a seat at the table. Always. They often know more than you do.

Together we can move mountains. But only if the platitudes about Citizen Science are brought to bear. 

1/ I haven't taken science since HS. 

BUT, based on Real World Evidence and a seat on a microbiology task force I assembled I had two ideas for #LongCOVID Randomized Controlled Trials last night.

Both addressing actual treatments. We were just working out details by the AM.

2/

#LongCovid is our nation's biggest mass disabling event in history

Wartime included

1 in 3 infections lead to Long COVID.

How many people do you know who's had COVID - even asymptomatic?

Now do the math

1/

Next Question with Katie Couric @iHeartRadio iheart.com/podcast/302-ka… People are suffering.

Some are going into year three of:

- neurological impairment
- severe gi issues (feeding tube level)
- parkinsonian like tremors
- neuropathy
- COVID onset diabetes
- Heart damage
- etc etc etc etc etc etc etc etc etc

2/