Microclot results in ME

Marylib

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I wish I had the brain power to understand all this. Am currently trying to help someone diagnosed with ME at some point - referring him to various Covid protocols, owing to his worsening with his Covid infection. This person has had 2 rounds of Astra Zeneca vaccine, then two rounds of Pfizer vaccines. He managed to avoid infection for some time, but seems the vaccines finally lost their mojo after 12 weeks from the last dose and nothing has helped so far. His IgG for SARS Co V2 is through the roof, D dimer indicates the body is trying to deal with something, but what can this person do? This person is also trying to recover from surgery for tethered cord.
 

vision blue

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@SNT Gatchaman In routine clinical practice, there are two fibrinogen tests- the one that looks at behavior - fibrongin activity (is that the clauss method? don't know what nmethod they use ) and the other than measures the amount of it - fibrinogen antigen. I think sometimes when the former is high, they reflex to the latter but sounds like we really should be having both of them.

theye landed on my radar because i'm looking for non invasive ways to measure for vessel inflammation

@Marylib Do you think his immune system is overreacting? or do you think he's still battling a smoldering infection? different appraoches on what to do depending on which.
 

SNT Gatchaman

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From reading I expect (I don't know) that the Clauss method or similar would be standard in clinical practice, but that an antibody-based test would be uncommon — probably only really used in research. If anyone has direct knowledge of this, please confirm or correct.
 

SNT Gatchaman

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At least not in my case, all are in normal values.
Also normal D dimer, alpha2antiplasmin and vonWillebrand factor Ag.
One of the points that Prof Pretorius makes is that the standard clinical tests are not reflecting what is going on with microclots. Now it's not proven that microclots are circulating in vivo, but their assessments in vitro showed the microclots were made of amyloid form fibrin, resistant to digestion and contained a2-antiplasmin, von Willebrand factor, serum amyloid A and various other inflammatory molecules.

Serum tests can't measure these sequestered factors ("all tests are normal"). Additionally, they make the point that d-dimer is a fibrin degradation product (FDP) and it would only read high if clots are being formed and broken down. The conjecture is that microclots are persistent and not being broken down, therefore d-dimer won't be elevated.

See A central role for amyloid fibrin microclots in long COVID/PASC: origins and therapeutic implications for more details and diagrams.
 

Marylib

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@vision blue Not sure what is going on with this poor guy. He kind of disappeared but he's quite sick in an acute phase, so that's only natural. Hopefully he will have enough improvement to show up again. I gave him all the accessible protocols I know of and directed him to a thread on this forum that I thought might help. First he has to feel well enough to read, think, etc.
 

vision blue

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@SNT Gatchaman some of the earliest folk who raised the problem of microclots in covid argued that d-dimer (the break down product of fibrinogen) in blood WOULD be elevated. Not sure about fibrinogen itself. and for platelets saw some claim theyd be low.
Later people may be changing that and arguing that its something more subtle in long covid (based on what youre saying) but i have not kept up with the literature. I think the earliest people to raise microclots were talking about acute severe covid so perhaps its more subtle in long covid cases.

@Marylib Yeah, its so hard to know what's going on when one is that sick. he may be on a lead that ends up going nowhere and is just an epiphemenon. But what else can one do except follow the leads til one collapses.
 

SNT Gatchaman

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I can't recall d-dimer being described as elevated in the micro-clot literature since I've been following it, but you're right that high d-dimers may relate to the initial observations in acute severe disease.

I think people were observing disseminated intravascular coagulation (DIC) in ICU patients which is when the thrombotic balance systems have got so out of control, that you can be simultaneously clotting organ microvasculature and haemorrhaging to death.
 
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These micro clots will contain metals and other accumulated toxins in my opinion, so processing them via using proteolytic enzymes should be done very slowly and carefully ( in my opinion.)

I"ve yet to pin down just what is slow enough...Maybe I dare take one nattokinase, today. And one next month.
 
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Saw this earlier: discussion of therapeutics being evaluated for long haul covid...including addressing micro-clots..

https://covid.responsumhealth.com/millions-hoping-for-much-needed-long-covid-treatments

Excerpts:

Current thought on possible causes of long COVID includes the following, singly or in combination:

  • Direct viral damage, either during initial infection or through remaining pools of virus
  • Autoimmunity, wherein the body’s immune system attacks healthy tissue
  • Dysregulated immunity, where a heightened immune response leads to excessive inflammation that can damage small blood vessels and nerves
  • Microclots, microscopic blood clots that can cause vascular issues
  • Reactivated dormant viral infections not directly related to the SARS-CoV-2 virus
"the target is hazy"

University College, London, will lead a major U.K.-funded trial involving 4,500 long COVID patients and four existing drugs with promising early data:

  • Loratadine (antihistamine)
  • Famotidine (antihistamine)
  • Colchicine (gout and heart inflammation)
  • Rivaroxaban (Xarelto®) (blood clot prevention)
Lead researcher Amitava Banerjee says the trial isn’t easy because the target is “hazy,” but they aim to learn more about possible underlying disease mechanisms.

Resolve Therapeutics’ experimental long COVID treatment, RSLV-132, is now being tested by the University of Washington and Fred Hutchinson COVID Clinical Research Center for fighting inflammation, fatigue, and brain fog. The drug is designed to remove from circulation certain nucleic acids that promote inflammation in autoimmune disease.
 

Marylib

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RSLV -132
https://resolvetherapeutics.com/product-candidates/rslv-132/
Remember RNase L? https://me-pedia.org/wiki/Ribonuclease_L
I wonder how long this clinical trial will take for Long Covid? If Long Covid people don't have Sjogren's already, considered among the many co-morbidities in ME, Dan Peterson may have a long white beard like Methuselah before someone connects the dots as microclots and decides what to do about it. But yeah, @Rufous McKinney if the micro-clots are full of decades worth of nasties by now, or if they have just migrated to all those tiny vessels that keep my feet blue unless elevated, not to mention the sclera and the lips and ... So roll it out and FDA approve whatever people want. If they want HELP Apharesis, give it to them.
 

Marylib

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oh I have that. My dentist kindly diagnosed me. Now, will anyone treat it? Without killing me, first?
Have you tried Mestinon? It's unlikely to kill you and I cried happy tears when I was first on it. Happy because I actually had tears instead of eyeballs made of grit and sandpaper. I guess it's officially autoimmune.
 
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Normal values in coagulation proteins are expected. Pretorious showed these inflammatory markers are sequestered inside the clots with proteomics. Their content was analyzed, so there's not so much left to the imagination here.
D-dimer could be high during acute COVID19 infection. Still, it is not usually elevated in LongCOVID since the body is not breaking down clots, and it is not elevated in my case with ME and microclot presence.

Now it's not proven that microclots are circulating in vivo, but their assessments in vitro showed the microclots were made of amyloid form fibrin
I didn't even think about the fact that this is not proven in vivo. Thanks for the thought 🤔
 

lenora

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I've had a heart attack, but I'm on blood thinners and aspirin. I've also now had four immunizations...Pfizer in all cases. No after-effects except a sore arm at most.

My children and their families have had COVID twice.....immunizations up to date at the time. One daughter & family had their vaccines in December, didn't have the 4th vaccine and ended up with COVID again...this time it was more serious. The vaccines were given in December and only lasted 4 mos. Point being, that it still isn't really know how long the immunizations exist in different individuals.

Research is still determining the length of time between vaccines will be needed. Yours, Lenora.
 
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Have you tried Mestinon? It's unlikely to kill you and I cried happy tears when I was first on it. Happy because I actually had tears instead of eyeballs made of grit and sandpaper. I guess it's officially autoimmune.
No...eye doctors I saw do not want to help me. Need to find somebody who will help me.

I need a new plan of attack.
 
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Point being, that it still isn't really know how long the immunizations exist in different individuals.
the vaccines don't prevent infection....so you can just keep getting it over and over.

We don' t even know if the vaccines "took" in our own cases.

My daughter in another country just got far more comprehensive blood testing than I ever receive.