The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

[BrightCandle]

https://www.researchsquare.com/article/rs-1727226/v1

The area of plasma images containing fibrinaloid microclots was commonly more than 10-fold greater in untreated platelet-poor plasma from individuals with ME/CFS than in that of healthy controls.

We conclude that ME/CFS is accompanied by substantial and measurable changes in coagulability, platelet hyperactivation, and fibrinaloid microclot formation. However, fibrinaloid microclot load was not as prevalent as was previously noted in PASC. Fibrinaloid microclots, in particular can provide a ready explanation, via (temporary) blockage of microcapillaries and hence ischaemia, for many of the symptoms, such as fatigue, seen in patients with ME/CFS. The discovery of these biomarkers pointing to significant and systemic endothelial inflammation, represents an important development in ME/CFS research. It also points at novel treatment strategies using known drugs and/or nutraceuticals that target systemic vascular pathology and endothelial inflammation.

Not a surprise to most of us that the clotting is present in ME/CFS too, interesting that this may suggest therapies that can improve our condition.

 

[godlovesatrier]

Really interesting got sent this in telegram group.

What I'd like to know is has anyone seen improvement from heparin and seraptase etc? As ten years ago people were trying this on PR forum but even those that responded well are to my knowledge no longer taking it. So just wondering why that is and why so few responded favourable.

Would be nice to get a study focussing on that next ideally.

But this is great work really very interesting.

 

[godlovesatrier]

Interesting sushi here talks about low sed rate meaning hypercoaguability and my sed rare has remained at 2 for 6 years. So maybe that's slightly predictive.

https://forums.phoenixrising.me/threads/low-sed-rate-hyperviscosity.14308/page-2

One other person said her short term memory was massively improved by heparin.

Another poster went into remission on sub-q heparin after the first dose not sure if therefore it didn't last much longer than that.

 

[Rufous McKinney]

What I'd like to know is has anyone seen improvement from heparin and seraptase etc?

after a sustained lul, I'm resuming ...at the moment: some NATTOKINASE

(editted to add: I'm beefing up my Omega consumption, and my purple anti blood stagnating...) and feel like its been helping so I'm just going to keep that up for a while)...

Part of my quest to further detox and somehow feel less ill. Serapeptase is around here too, maybe I'll alternate.

Just going slow- one every few days.

 

[godlovesatrier]

Yeah I've taken natto without noticing really any effect. Wondering if it's not strong enough....never was able to get any seraptase.

 

[BrightCandle]

Nattokinase made me dizzy, Lumbrokinase on the other hand made me feel clear and I found bromelain to fairly similar in terms of benefits but both I had to stop about 1 month in as my blood got too thin. Grape seed apparently breaks up platelet clots and I am still taking that, all of that is from the German clinic paper talking about things to try before physically removing the clots.

 

[godlovesatrier]

Yeah I had an unpleasant allergic reaction to lumbroniskase. I'm still wondering if I have mcas at this point as well. I do seem to react in an allergic way whereas ME patients just seen to feel sicker not have an allergic or anaphalytic reaction to things. Unless they have mcas.

Good about the GSE. got that upstairs as well will have to add it back in.

 

[BrightCandle]

In my experience though its not a route to recovery, I just got some improvement from this alongside the other 3 major things I did. Its part of the mix. We likely need more effective and targeted treatment.

 

[godlovesatrier]

We always do it seems. I do wonder if the heparin would work tho. Based on forum threads it seems to have a small but noticeable effect on certain symptoms

 

[godlovesatrier]

From 2001:

Hypercoagulation
The CFS/FM Plot Thickens
Melissa Kaplan, The Carousel Network News, 8(5), 2001
https://www.anapsid.org/cnd/diffdx/hypercoagulation.html

So it turns out that someone did a treatment trial with heparin for the exact same reasons already in 2001. It says it saw large improvement in 3 patients and moderate in 4 patients and no improvement in zero patients.

Patients appear to have been on heparin injections twice a day. Inc transfer factor and bromelain. And then antivirals and antibiotics to apparently clear the infections which hide inside the fibrin deposits.

 

[Rufous McKinney]

the chinese herbs target my blood stagnation, so they will contribute positively, somehow to this process of clearing out junk.

I've been off this particular herb mix recently, having been unable to tolerate more than a few days of "detox effects". I'm trying to go REAL slowly as it crashes me otherwise. I hate feeling EVEN worse.

I usually notice improvement in mucous and breathing, when I do some of the enzymes.

 

[SWAlexander]

This is to be very significant, at least for me:
"The discovery of these biomarkers pointing to significant and systemic endothelial inflammation represents an important development in ME/CFS research. It also points at novel treatment strategies using known drugs and/or nutraceuticals that target systemic vascular pathology and endothelial inflammation."
https://www.researchsquare.com/article/rs-1727226/v1

The 20 days of Heparin and now on Marcurmar plus methotrexate have brought me to 80% recovery.

There is also vedicinals9 that reduces inflammation.
Originally it was for Covid-19 but it may help ME/CFS.

 

[GlassCannonLife]

Nattokinase made me dizzy, Lumbrokinase on the other hand made me feel clear and I found bromelain to fairly similar in terms of benefits but both I had to stop about 1 month in as my blood got too thin. Grape seed apparently breaks up platelet clots and I am still taking that, all of that is from the German clinic paper talking about things to try before physically removing the clots.

Paper link please?

 

[godlovesatrier]

Here's a full explanation of Berg's treatment plan from 2001 written by Cort in 2018 (Please see previous reply for a link to the 2001 discussion of Berg's hypercoagulation work around fibrin deposits in FM and ME patients).

https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/

Which people may find interesting.

 

[Countrygirl]

 

[godlovesatrier]

Very helpful. Thanks @Countrygirl

 

[Countrygirl]

 

[GlassCannonLife]

Do any of you know if you can take eg bromelain and serrapeptase at the same time (or any of the others), ie in the same swallow? Would they digest each other.?

Not sure if they need to be spaced apart but then wouldn't they digest themselves if that was an issue..?

 

[Marylib]

Time to start manufacturing BC007 in the bathtub @sometexan84? (that was kind of a joke. I would never make BC007 in a bathtub). But seriously, someone needs to invest in something to help us, for the love of all that's holy.

 

[Marylib]

Now Doug Kell says they find the same thing in RA. So much for that. Poly Bio may be branching out and leaving us behind like everyone else.