Is Apheresis an effective treatment for Long Covid and ME?

[andyguitar]

Perhaps they are not fully formed clots, but rather fully form during the HELP apheresis process? Just a guess,

It looks to me as if it is this. So you could look at Heparin acting like a magnet.

 

[SWAlexander]

Shanti1: "COVID microclots have a different composition from normal clots"
To reveal if coagulopathies relate to the course of COVID-19, we examined 255 patients with moderate and severe COVID-19, receiving anticoagulants and immunosuppressive drugs. Coagulopathy manifested predominantly as hypercoagulability that correlated directly with systemic inflammation, disease severity, comorbidities, and mortality risk. The prolonged clotting tests in about ¼ of cases were associated with high levels of C-reactive protein and antiphospholipid antibodies, which impeded coagulation in vitro. Contraction of blood clots was hindered in about ½ of patients, especially in severe and fatal cases, and correlated directly with prothrombotic parameters. A decrease in platelet contractility was due to moderate thrombocytopenia in combination with platelet dysfunction. Clots with impaired contraction were porous, had a low content of compressed polyhedral erythrocytes (polyhedrocytes) and an even distribution of fibrin, suggesting that the uncompacted intravital clots are more obstructive but patients could also be prone to bleeding. The absence of consumption coagulopathy suggests the predominance of local and/or regional microthrombosis rather than disseminated intravascular coagulation. The results obtained (i) confirm the importance of hemostatic disorders in COVID-19 and their relation to systemic inflammation; (ii) justify monitoring of hemostasis, including the kinetics of blood clot contraction; (iii) substantiate the active prophylaxis of thrombotic complications in COVID-19. https://www.nature.com/articles/s41598-021-95397-6

 

[lenora]

Hello.....I was one of the early patients 30-35+ yrs. ago who was suffering from ME.

One of our earliest treatments involved using guafenesin (a mucous thinner) used in cough syrups, antihistamines, etc.,....and in larger amounts for treatment of ME. I faithfully used that prescription (by 'script in lg. doses) faithfully for probably 8 years or more. I still use it today to help with some allergy symptoms....it loosens phlegm and according to what was then known, helped liquify secretions that caused ME. Hence the connection to the blood vessels in the brain.

It stands to reason for a lot of us that this would be true, especially if we have pre-existing neurological conditions that require surgery, work on the brainstem and the like. I now have 6 stents, one near my carotid artery b/c of closure. I need more stents in the future and will do that fairly soon.

While I've tried guafenesin over the years, I would be very interested in hearing about treatments that are expected to be used. Please note that guafenesin did not cure my ME, or help in any manner except making it easier to breathe. Large doses must be used and it has gone out of favor. You can buy it OTC, I buy store brands, take a larger amount if necessary and it's fairly inexpensive. You may also know something similar under the name of Mucinex at a much higher cost. I've had high-end prescription ones and the OTC, store brands....they're fine, but this new info is interesting and is a repeat of one of our older "findings." Yours, Lenora.

 

[Reading_Steiner]

As I tend to do it seems i've started turning this over in my mind and looking for pattern mismatches etc.
I don't think i'm done yet but so far I've thought of a few things. Stress - tends to make people worse, this would line up with a narrowing of the blood vessels. Restless legs or body - mechanical stimulation of the muscles etc might help to shift reluctant red blood cells through the system ? PEM could simply be the result of 'running' the cells under hostile conditions ... mild to moderate lack of oxygen ? possible lack of other nutrients too ? we would expect to see increases in lactic acid under these conditions, which we do. That would explain why mild or moderates don't get PEM at 'rest', the oxygen supply is sufficient in that scenario but insufficient during exercise. Crashes and loss of stamina could either be when the toxicity in the cells becomes too much for too long of a period, or other factors amplify it, causing the cells to go on strike en masse while they regenerate / die off and regrow, this seems like a good fit for ' pacing well over time improves stamina '. The other explanation is that crashes happen when more red blood cells become deformed or however this process is occurring, which means that you feel really ill and have to rest, I suppose the question is wouldn't that turn the person a little more blue in color ? Lastly if the immune system has a hand in creating these issues or 'micro-clots', it would explain why my crashes are much worse when environmental factors in the air are also involved.

Questions that stand out for me - do long covid patients experience crashes and PEM as separate things ?
could the mechanisms involved be different enough to account for that if they don't ?

 

[SWAlexander]

I would ask (as I have before) why blood cells become deformed. Is deformity a genetic or epigenetic condition such as sickle cell or spherocytosis? Deformed blood cells cannot transport oxidant. Are died-off cells, like spherocytosis, become waste (micro clots) that lingers and clots blood vessels? “The irregular shape of the red blood cells can cause the spleen to break them down faster. A normal red blood cell can live for up to 120 days, but red blood cell with hereditary spherocytosis might live for as few as 10 to 30 days.” “New research indicates that an overload of various inflammatory molecules, literally "trapped" inside insoluble microscopic blood clots (micro clots), might be the cause of some of the lingering symptoms experienced by individuals with Long COVID.”
Dr. Asad Khan It may interest you to see pictures of my clots & fibrin. Usual clotting tests were normal

https://twitter.com/i/web/status/1452355219254235136

There is no explanation (yet) what these clots & fibrin consist of. That would be the most important finding.

This is how Dr. Khan´s venous blood gas test looked.

 

[SWAlexander]

Welcome to The Apheresis Association
Paper Downloads: https://apheresisassociation.org/papers-&-studies

 

[ruben]

I was wondering, if the Astra Zeneca vaccine is risky when it comes to causing blood clots, which I think has been suggested, does this now mean that this vaccine might be best avoided if we already have a problem with micro clots. My ME/CFS is worse since I had my covid Astra Zeneca injections.

 

[SNT Gatchaman]

I would ask (as I have before) why blood cells become deformed. Is deformity a genetic or epigenetic condition such as sickle cell or spherocytosis? Deformed blood cells cannot transport oxidant. Are died-off cells, like spherocytosis, become waste (micro clots) that lingers and clots blood vessels? “The irregular shape of the red blood cells can cause the spleen to break them down faster. A normal red blood cell can live for up to 120 days, but red blood cell with hereditary spherocytosis might live for as few as 10 to 30 days.” “New research indicates that an overload of various inflammatory molecules, literally "trapped" inside insoluble microscopic blood clots (micro clots), might be the cause of some of the lingering symptoms experienced by individuals with Long COVID.”

Just spit-balling...

In hereditary spherocytosis (HS), red blood cells (RBCs) are unable to maintain their normal form of a biconcave disc. This means they can't deform properly through the smallest capillaries, where they usually fold over, like a taco, and then bounce back.

HS is associated with marked splenomegaly and gallstones. Both features are due to the short RBC lifespan as you note, being broken down in the spleen and releasing their haem products as conjugated bilirubin. I think the short lifespan is due to the damage they sustain squeezing through the small capillaries as larger spherical forms. I don't believe marked splenomegaly and gallstones are common in ME patients.

In ME, the RBCs may be completely normal, and able to deform appropriately. But what if the micro-thrombi circulating with them are sufficient to impede their passage through the smallest capillaries? This would mean the RBCs don't get damaged, but are slow.

Slower RBC transit would mean that more O2 is extracted from each RBC, leading to lower SvO2, as observed by Dr. Khan on his venous blood gas. The tissues are still being starved of O2 overall, as the absolute flux of RBCs is decreased due to their slower transit.

A mild-moderate ME patient might have an amount of micro clot that impaired tissue oxygenation during exertion but not at rest. A more severe patient might have so much micro clot affecting their micro-circulation, that they are compromised even at rest. Fatigue affects the muscles and neuroinflammation and cognitive impairment affect the brain. Multiple symptoms ensue.

Aerobic threshold is then reduced and the mitochondrial biochemical pathways shift to compensate.

Could the slower flow through the (high-capacity) microcirculation cause an effective reduction of blood volume and lead to POTS symptoms?

ETA: This all seems to have been thought about previously and was discussed on Health Rising back in 2018.

 

[Martin aka paused||M.E.]

I have a homozygous mutation for osmotic hemolysis... I wonder if that plays a role.
I also wonder why no we don't have heart attacks or strokes...

 

[SWAlexander]

Just spit-balling...

In hereditary spherocytosis (HS), red blood cells (RBCs) are unable to maintain their normal form of a biconcave disc. This means they can't deform properly through the smallest capillaries, where they usually fold over, like a taco, and then bounce back.

HS is associated with marked splenomegaly and gallstones. Both features are due to the short RBC lifespan as you note, being broken down in the spleen and releasing their haem products as conjugated bilirubin. I think the short lifespan is due to the damage they sustain squeezing through the small capillaries as larger spherical forms. I don't believe marked splenomegaly and gallstones are common in ME patients.

In ME, the RBCs may be completely normal, and able to deform appropriately. But what if the micro-thrombi circulating with them are sufficient to impede their passage through the smallest capillaries? This would mean the RBCs don't get damaged, but are slow.

Slower RBC transit would mean that more O2 is extracted from each RBC, leading to lower SvO2, as observed by Dr. Khan on his venous blood gas. The tissues are still being starved of O2 overall, as the absolute flux of RBCs is decreased due to their slower transit.

A mild-moderate ME patient might have an amount of micro clot that impaired tissue oxygenation during exertion but not at rest. A more severe patient might have so much micro clot affecting their micro-circulation, that they are compromised even at rest. Fatigue affects the muscles and neuroinflammation and cognitive impairment affect the brain. Multiple symptoms ensue.

Aerobic threshold is then reduced and the mitochondrial biochemical pathways shift to compensate.

Could the slower flow through the (high-capacity) microcirculation cause an effective reduction of blood volume and lead to POTS symptoms?

ETA: This all seems to have been thought about previously and was discussed on Health Rising back in 2018.

I have (diagnosis) gallstones, DVT, Urtikaria, Myalgia, MCAS among others.

 

[andyguitar]

I also wonder why no we don't have heart attacks or strokes...

Some other circulatory disorders are fairly common in me/cfs. Such as Raynauds and migraine.

 

[SWAlexander]

Some other circulatory disorders are fairly common in me/cfs. Such as Raynauds and migraine.

Raynauds is related to Lupus (MTHFR).
A while back I asked about Autoimmune Hemolytic Anemias Hemolytic anemias, which are rare, are often caused by autoimmune destruction of red cells. The hemolysis can be intravascular or extravascular. In general, IgG mediates warm antibody–induced hemolysis, and IgM cold antibody–induced hemolysis. Immunosuppression is the main treatment. https://www.nejm.org/doi/full/10.1056/NEJMra2033982

 

[godlovesatrier]

I was wondering, if the Astra Zeneca vaccine is risky when it comes to causing blood clots, which I think has been suggested, does this now mean that this vaccine might be best avoided if we already have a problem with micro clots. My ME/CFS is worse since I had my covid Astra Zeneca injections.

Joshua Leisk now has 40 blood samples from patients after getting a variety of vaccines and has seen the red blood cell clustering and lack of red blood cell repelling each other - also in some samples the red blood cells look very strange...not perfectly round that is. He even saw what I think might now be fibrin about 4 weeks ago in one of the first ever samples, I thought it looked very odd the first time I saw it, but now I think it looks very similair to a micro clot (the micro clot article published an image of the micro clot and the two look incredibly similair).

What this all means is anyone's guess of course, but it seems like a big coincdience if not relevant.

The blood goes from this:

To this:

Longer explanation here: https://bornfree.life/experimental-...eurotransmitters-and-mineral-deficiencies/37/

I mentioned on a seperate thread he's telling people to take NAC and Bi-carb to alleviate this. Joshua says that the people with the red blood cells as shown in image 2 display CFS like symptoms. I cannot get a definitive answer on ME patient samples and what they look like (I am trying!).

I'm posting this because it's not clear at all whether this IS related to the coagulation and fibrin discussion or it's something else entirely different and because you asked about vaccines @ruben which do appear to cause this heavy worsening of red blood cell abnormalities.

 

[Martin aka paused||M.E.]

Joshua Leisk now has 40 blood samples from patients after getting a variety of vaccines and has seen the red blood cell clustering and lack of red blood cell repelling each other - also in some samples the red blood cells look very strange...not perfectly round that is. He even saw what I think might now be fibrin about 4 weeks ago in one of the first ever samples, I thought it looked very odd the first time I saw it, but now I think it looks very similair to a micro clot (the micro clot article published an image of the micro clot and the two look incredibly similair).

What this all means is anyone's guess of course, but it seems like a big coincdience if not relevant.

The blood goes from this:

View attachment 45292

To this:

View attachment 45291

Longer explanation here: https://bornfree.life/experimental-...eurotransmitters-and-mineral-deficiencies/37/

I mentioned on a seperate thread he's telling people to take NAC and Bi-carb to alleviate this. Joshua says that the people with the red blood cells as shown in image 2 display CFS like symptoms. I cannot get a definitive answer on ME patient samples and what they look like (I am trying!).

I'm posting this because it's not clear at all whether this IS related to the coagulation and fibrin discussion or it's something else entirely different and because you asked about vaccines @ruben which do appear to cause this heavy worsening of red blood cell abnormalities.

I had the same thoughts buddy! When he sent me I saw it was clotted but now it all makes more sense and fits to the bigger picture

 

[godlovesatrier]

Yep definitely. These vaccines cause massive coagulation for about 4 weeks without the NAC and bicarb prob goes on much longer, it's scary really.

I've no idea of nattokinase even works tbh. Hopefully this is progress for all patients anyway inc ME.

 

[SWAlexander]

I had the same thoughts buddy! When he sent me I saw it was clotted but now it all makes more sense and fits to the bigger picture

Thanks for posting.
Very very interesting to me was "BH4 can be impaired by peroxynitrites, low ferritin, low riboflavin, low niacin and low 5-methyltetrahydrofolate (5-MTHF)."
https://bornfree.life/experimental-...eurotransmitters-and-mineral-deficiencies/37/

 

[godlovesatrier]

Just a quick comment on BH4, extremely difficult to balance or rectify with supps or herbs, honestly amazingly hard to rebalance these symptoms when they are broken. Some are much easier than others to rectify, but the dopamine precursors etc, very hard to balance and get right on a daily basis.

 

[Martin aka paused||M.E.]

Just a quick comment on BH4, extremely difficult to balance or rectify with supps or herbs, honestly amazingly hard to rebalance these symptoms when they are broken. Some are much easier than others to rectify, but the dopamine precursors etc, very hard to balance and get right on a daily basis.

Very true! The truth is it's nearly impossible... That's why the drug is so expensive

 

[godlovesatrier]

Yep, that's my takeaway from 3 months of looking at it and reading peoples struggles via Josh's discord haha!

 

[Keats]

Joshua Leisk now has 40 blood samples from patients after getting a variety of vaccines and has seen the red blood cell clustering and lack of red blood cell repelling each other - also in some samples the red blood cells look very strange...not perfectly round that is. He even saw what I think might now be fibrin about 4 weeks ago in one of the first ever samples, I thought it looked very odd the first time I saw it, but now I think it looks very similair to a micro clot (the micro clot article published an image of the micro clot and the two look incredibly similair).

What this all means is anyone's guess of course, but it seems like a big coincdience if not relevant.

The blood goes from this:

View attachment 45292

To this:

View attachment 45291

Longer explanation here: https://bornfree.life/experimental-...eurotransmitters-and-mineral-deficiencies/37/

I mentioned on a seperate thread he's telling people to take NAC and Bi-carb to alleviate this. Joshua says that the people with the red blood cells as shown in image 2 display CFS like symptoms. I cannot get a definitive answer on ME patient samples and what they look like (I am trying!).

I'm posting this because it's not clear at all whether this IS related to the coagulation and fibrin discussion or it's something else entirely different and because you asked about vaccines @ruben which do appear to cause this heavy worsening of red blood cell abnormalities.