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Hannah Davis Profile picture
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Nov 15 • 7 tweets • 4 min read
Big news: I was lucky to get tested for micro blood clots, & I have a lot of them! #LongCovid

Healthy control blood on the left. Mine on the right. The green is all microclots!

These clots are likely blocking oxygen from getting around my body & could explain many symptoms. 1/ healthy control blood; the screen is mostly black with a fewHannah's blood; the screen is lit up with green dots which a
I also have a bunch of hyperactivated platelets.

I'm officially on #TeamClots & believe it's a vital and immediate research direction for #LongCovid & ME/CFS.

2/
The amount of clots seem to be associated with the severity of #LongCovid. Of the 3 people I tested with, we guessed I would have the most because I'm generally more severe, and that ended up being true.

3/
While this is exciting, it's also scary! For whatever reason, it seems like treatment is not straightforward for these clots; they seem to return after treatment, meaning it's likely a downstream finding of some other process. Finding a good treatment is an immediate goal!

4/
I started nattokinase-serrapeptase on Friday and am keeping my hopes moderate; will update when I've been on it for a month.

5/
Trying not to tag anyone but a ridiculous amount of love & thanks to everyone who is investigating this research direction! 💓 #LongCovid #TeamClots

6/
This is not a commercially available test yet! These tests may pick up on clotting in the meantime: 7/

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More from @ahandvanish

Hannah Davis Profile picture
Nov 7
#LongCovid can happen after a 2nd/3rd infection even if you recovered fine after earlier infections. Patient groups have known this for months, since many people are joining under those circumstances.

1/
#LongCovid support groups said that infections happened in vaccinated people, that Long Covid happened in breakthrough infections, that not everyone made antibodies, that some lost antibodies, & many other patterns that we saw months before the public. All of them came true. 2/
The same will happen with reinfections. They are not safe for everyone. People get #LongCovid after being fine on their 1st infection. But it will take likely at least a year before it's common knowledge, because the early warnings are not heard.

Until then, protect yourself. 3/
Read 5 tweets
Hannah Davis Profile picture
Nov 5
I hate putting symptom stuff on Twitter but going to bc it’s so consistent & weird & I need insight:

When I get accidentally overdo it physically/with cardio, I get a feeling of my brainstem being in a grip & my head filling up with pressure. 1/

#NEISvoid #LongCovid #pwME
The brainstem sensation is most specific - it feels like someone is gently squeezing it, or like someone had previously hit me in the back of my head.

In the worst times, but not always, this comes with vertigo and vision issues.

It doesn’t seem like PEM bc it’s instant. 2/
An example: I lugged a suitcase up 4 flights of stairs, & my heart rate hit 150 (I know, I wasn’t thinking).

By the top of the stairs I had the brain feeling and it lasted for about a day (was in bed the whole time). 3/
Read 6 tweets
Hannah Davis Profile picture
Sep 28
I'm honored to be on @TIME’s 2022 #TIME100NEXT list, with a kind write-up by @timkaine.

Thousands of people are getting #LongCovid each day, many of which lead to ME/CFS, POTS, & other lifelong illnesses. We need clinical trials & treatments urgently!

time.com/collection/tim… 1/ A picture of Hannah Davis w...
This is a big responsibility & I will do my best to represent our communities well. So many patients with #LongCovid & ME/CFS brought light to the illness & continue to fight for better research, resources, & treatment. We all deserve this recognition.

2/
To everyone: please keep talking about #LongCovid. Please talk to your friends, family, neighbors, government officials. Please learn about and circulate our major calls to action (docs.house.gov/meetings/VC/VC…), and research requests (patientresearchcovid19.com/wp-content/upl…). We need allies!

3/
Read 7 tweets
Hannah Davis Profile picture
Sep 21
“I can’t say why people aren’t reacting like their hair’s on fire. #LongCovid is a serious, serious illness.”

-@ZekeEmanuel

time.com/6213103/us-gov…

1/
"The following day, chronic disease advocates protested in front of the White House, arguing that #LongCovid and the related condition myalgic encephalomyelitis constitute a public-health emergency."

2/
“We’re in the middle of the greatest mass-disabling event in human history,” says #LongCovid patient and advocate @loscharlos.

And unless people wake up to the long-term consequences of COVID-19, it is “going to continue taking folks out like fish in a barrel.”

3/
Read 10 tweets
Hannah Davis Profile picture
Sep 9
To #pwME and #LongCovid - is a crash the same as PEM, to you? Or are they different?

(Please feel free to elaborate in comments).
cc @JanetDafoe
Followup if they are different to you: does a crash come before PEM, or after? Or neither? #pwME #longcovid
Read 4 tweets
Hannah Davis Profile picture
Sep 8
How does reinfection impact #LongCovid?

Excellent early data from @long_covid and team shows reinfection makes Long Covid symptoms worse in many people, both children and adults.

1/
Reinfection with COVID brought back #LongCovid in 60% of people whose Long Covid had resolved 😬

2/
10% of people in this cohort got #LongCovid on their second infection, not their first infection, and 1% got it on their third infection.

3/
Read 4 tweets

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