Urgently seeking help from #pwME #pwLC : Who tests for & treats microclots in UK (outside of research studies)? It’s been suggested I have microclots in my lungs and that this could have contributed / caused my life-threatening saturation event. Any thoughts on this? - ThreadSky

vladvexler.bsky.social • 13 days ago

Urgently seeking help from #pwME #pwLC :

Who tests for & treats microclots in UK (outside of research studies)?

It’s been suggested I have microclots in my lungs and that this could have contributed / caused my life-threatening saturation event.

Any thoughts on this?

Comments

binitakane.bsky.social•13 days ago

Hi Vlad, Prof Caroline Dalton (Sheffield) and Prof Doug Kell (Liverpool) both have the facility to measure microclots using the Pretorius method, but unfortunately only via research studies. It’s not commercially available.

notunpackedyet.bsky.social•12 days ago

It's amazing to me that Sheffield has been looking at it since...2021?...and we still have nothing available, even privately. Is it a lack of funding?

binitakane.bsky.social•12 days ago

Mainly yes…

rasneist.bsky.social•13 days ago

Really glad to learn that you made it through!! Strength for you ❤️

newsupdates.bsky.social•12 days ago

They can be removed in a procedure

hmexperience.dk•13 days ago

Ask all the chat bots that have a deep research tool to help you. They have helped countless already

no1sarah.bsky.social•13 days ago

So sorry for everything you're going through.

I haven't been able to find anywhere in the UK, I believe Germany is the nearest option - which is no use for most of us, I know.

If you haven't already come across it, this paper has useful suggestions:
https://pmc.ncbi.nlm.nih.gov/articles/PMC9484810/

murtoz.bsky.social•12 days ago

Some great videos to watch about microclots which include Dr Pretoriuis who was the first to discover the microclots.

https://www.youtube.com/watch?v=1MQEqfmYbu0

murtoz.bsky.social•12 days ago

whoops meant to add this one too https://www.youtube.com/watch?v=vWisaTFp4KI

murtoz.bsky.social•12 days ago

Another great resource: https://pharmd.substack.com/p/frequency-asked-questions-nattokinase

slow-lane.bsky.social•13 days ago

Is Nattokinase worth looking at?

p-prodigal.bsky.social•13 days ago

Nattokinase and other enzymes could be helpful indeed; As long as thinning the blood does not negatively affect other cardiovascular problems for him.

murtoz.bsky.social•12 days ago

It helped reverse the slide of my pre-covid ME from moderate to severe after one covid infection, and I know lots of other pwME/LC who have also had benefits. For most of us it was a couple of months before we started seeing effects. I reduced frequency, severity and duration of my PEM episodes.

murtoz.bsky.social•12 days ago

And going by the findings of #TeamClots, it seems safe to assume that if you've had covid, you have microclots to some extent (especially if you have LC symptoms).

They also checked pre-covid ME and also found microclots there although at a lower concentration.

rortysorbet.bsky.social•12 days ago

This contains interesting information:
https://www.technologynetworks.com/immunology/articles/how-long-covid-research-could-change-the-way-we-think-about-blood-microclots-393265

rortysorbet.bsky.social•13 days ago

Really sorry to hear this Vlad. I was diagnosed with multiple PE 3 years ago, self identified after difficulty breathing. Standard procedure is getting a CT scan - demand that your GP refers you urgently (within 24 hrs) for a chest CT. You can pay to go private as a worst case (circa 1k)
1/

rortysorbet.bsky.social•13 days ago

I was put on high dose blood thinners immediately, and that seems to be the standard treatment, it dissolves the clots. It's then just a matter of time, exercise to get the blood flowing, and staying calm. Hospital should also do other checks - heart scan, pulse-ox monitoring etc. Best of luck! 2/2

rholmes.bsky.social•13 days ago

I don't think microclots show up on a CT scan, they are tiny - about 20 μm across. Sp02 is the first thing to check: if that is low, warrants further investigation.

albertusman.bsky.social•13 days ago

Just an idea: The resolution of MR is better than CT. MR scan is more expensive though.

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