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Eureka Health Profile picture
@EurekaHealthApp
Mar 22, 2023 • 13 tweets • 6 min read • Read on X
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Sharing out some results from our ai-powered #LongCovid site:
* Most popular
* Most effective overall
* Most effective for POTS, Fatigue, Brain Fog, and more

These results are *directional*, but in the spirit of empowering patients with more information, we wanted to share.

🧵
1/ Sources
* Twitter
* Reddit: 2 LC subs, plus r/cfs, r/pots, r/mcas, r/eds, and r/dysautonomia

We collected >35k treatment reports, and read them w/ an AI model to (imperfectly) see if people improved/worsened.

We show all raw data and inferences in case you want to vet!
2/ Top 20 most popular

This helps us gut check the data. Indeed, we see some familiar faces - antihistamines, nattokinase, LDN, probiotics, etc.

The beta blocker reports are mostly coming from r/pots, and the steroid reports are largely from r/mcas.
3/ Most effective overall

Significant improvement
1. HELP Apheresis
2. Tollovid
3. Serrapeptase
4. Fasting
5. HBOT

Any improvement
1. Sleep
2. Pacing/rest
3. Kefir (👀 @remissionbiome)
4. Anti-inflammatory diet
5. Meditation
4/ Top for #POTS symptoms

1. Hydration
2. Salt
3. IV fluids
4. Compression stockings

No big surprises here!

Note that % improved for specific symptoms is lower b/c people don't always call out the symptoms that improved. For these, just focus on relative ranking
5/ Top for Fatigue

1. Carnitine
2. LDN
3. Vitamin B6
4. Ashwagandha
5. Pacing

Nice to see #LDN so high on the list, with large n!

Btw, check the LDN page to see most popular dosages (most common was 4.5mg)

ai.eurekahealth.com/longcovid/Low-…
6/ Top for #BrainFog

1. Wellbutrin
2. Guanfacine
3. Carnitine
4. Anti-inflammatory diet
5. Fish oil

Interesting to see Carnitine popping up again, it wasn't previously on my radar!
7/ Top for #PEM

1. Lumbrokinase
2. Lactoferrin
3. Pacing
4. Kefir
5. VNS

Interesting to see Kefir bubbling up again, and cool to see Lumbro at the top of this list (#TeamClots).

Note that all improved % values much lower than for POTS; possibly PEM is harder to treat
8/ Top for Tachycardia

1. Ivabradine
2. Beta blockers
3. Metoprolol
4. Propranolol
5. Atenolol

All heart meds - makes sense! On the non-prescription side, we also see carnitine and potassium in the top 10.
9/ Bonus: Most worsened

1. Alcohol
2. Caffeine
3. Antidepressants
10/ Bonus 2: Some unexpected ones (each n=1)

* Tanning bed
* Marshmallow
* La Croix
* 528hz frequency

ai.eurekahealth.com/longcovid/528h…
11/ Caveats

Some of these treatments have real risks, and you should talk to your doctor before making any major changes to your treatment regime.

Also, these data shouldn't be given the same weight as actual surveys or controlled studies!
What do you think? Any surprises?

Click the link below to see the results for your own symptoms/conditions, and see user reports for any treatments you're curious about (it's 10x better than searching twitter).

ai.eurekahealth.com

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More from @EurekaHealthApp

Eureka Health Profile picture
Dec 9, 2022
#MicroClots are showing a lot of promise as a key piece of the #LongCovid puzzle (#TeamClots).

#nattokinase and #serrapeptase are supplements help break them down. They've provided relief to many, and are available today.

How do they work, and how do you get started? 🧵
1/ How do they work?

@resiapretorius's work identifying #MicroClots in #LongCovid patients was groundbreaking. These clots are different from stroke-causing clots, but could still be causing major issues.

nature.com/articles/d4158…
Covid spike protein can cause blood clots, and there's evidence that virus persists in the body for months after infection, which could contribute to ongoing clotting.
Read 19 tweets
Eureka Health Profile picture
Dec 2, 2022
Antihistamines should be near the top of your list of things to try for #LongCovid.

Yes, allergy and heartburn medication have provided *substantial* relief for many.

How does it work, and how do you get started? 🧵
1/ How does it work?

Histamine is in all of us, and plays a role in:
- Regulating sleep-wake cycles, temperature, and blood pressure
- Stimulating production of mucus and gastric acid
- Inflammation

It's in food, and it's also produced by your body. Too much is bad.
Enter Mast Cell Activation Syndrome (#MCAS).

In an allergic reaction, your immune system alerts your mast cells of an invader, and, among other things, they produce histamine to help clear things out.

Sometimes, they're too easily stimulated and flood the system with histamine.
Read 13 tweets
Eureka Health Profile picture
Oct 12, 2022
Why is Brain Fog so common in #LongCovid (+#MECFS)?

Two giants of immunobiology and neuroscience, @virusesimmunity and @michelle_monje, just published a preprint that reviews the latest.

Here’s what you need to know 👇
First, it appears that multiple mechanisms conspire to cause Long Covid, and any given case might have its own particular combination.

Researchers are racing to confirm these mechanisms, so we can start working on cures.
1/ Respiratory inflammation --> central nervous system (CNS) inflammation

Some impacts:
a) Disrupted myelination: electrical impulses don’t fire as well
b) ⬇️ hippocampus cell growth: worse memory and mood
c) ⬆️ astrocyte reactivity: poor blood flow and reduced neurotransmitters
Read 11 tweets
Eureka Health Profile picture
Oct 10, 2022
Why is symptom tracking for #LongCovid or #MECFS so hard? 📈

It's invaluable to know how your condition is changing and if new treatments are helping.

But after talking to over 200 patients, almost nobody sticks with it.

Here’s how we could do better 🧵
1/ They don't actually help you get better 🤷

Symptom tracking should help you get better. If the tool isn’t providing insight into how treatments are impacting you and how you can get better, of course you’ll eventually stop using it.
2/ The questions are too vague 😶‍🌫️

“mild, moderate, severe” isn’t enough. Answers drift over time, and it won’t capture important, small changes.

More patient-informed rubrics are needed to track more accurately and consistently.

Here's a good example in our app: Image
Read 11 tweets
Eureka Health Profile picture
Sep 30, 2022
🌬 Breathwork is a not-so-hidden secret within the #LongCovid and #MECFS community, and has been described as “game-changing” and “the number 1 intervention I’ve tried”.

But how could it possibly be so helpful? How does it work? Let’s dive in.
1/ How does it work?

First off, this is not just “thinking your symptoms away”. It creates substantial changes to your physiology that can counteract some of the harm caused by Long Covid.
1.1/ Vagus Nerve (VN) Stimulation.

A disrupted VN (e.g. via persistent virus) can contribute to dysautonomia. Breathwork stimulates the VN, activating a “rest and digest” mode, potentially mitigating these symptoms and even decreasing inflammation.
Read 14 tweets
Eureka Health Profile picture
Sep 21, 2022
The twittersphere for #LongCovid and #MECFS is an information goldmine, but to get it you need to follow the right people.

Here are the top 9 accounts you should be following to stay up to speed with the latest. 👇
1/ @PutrinoLab

David Putrino runs a research group at Mt. Sinai, is a fierce patient advocate and a great science communicator. He makes sure patients are informed and involved in the latest research.
2/ @microbeminded2

Amy Proal is a tour de force in Long Covid research, and is the CSO of a new @polybioRF initiative focusing on viral persistence. Follow her to stay up to speed on the latest Long Covid research (and we'd recommend her interviews on Youtube as well).
Read 13 tweets

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