Microclot results in ME

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Hello everyone,

Some of you know I’ve been trying to replicate Pretorius's findings for the last couple of months. I’m very interested in this research since, for me, it perfectly explains all my symptoms, and I think it matches with most ME research done until today.
I’ve partnered with the father of a teenager who suffers from LC. He bought an old fluorescence microscope and we’ve done some experiments with the help of a nurse. Our results weren’t that good, so when the opportunity came, we decided to travel to Germany to have more data and answers. Last week I visited Dr. Jaeger’s clinic in Mülheim to test myself for microclots.


They classify the results with a scale of 4 in three categories:

  1. Platelets - They look at platelet spreading (I have a 2/3 result) and clumping (also 2/3)
  2. Microclots - Significant presence (3)
  3. Endothelial Damage - Very little (2)
C0814013-A16C-49D4-8CA9-7438FD41E89C.jpeg


Here you can see the micrographs from my blood for microclots:

28A9C15E-221D-47B1-8E08-A903DAF07578.jpeg


D5283017-DA48-43D5-9245-ED7E9E8DA274.jpeg


And for platelet activation:
1C81BBAA-DD51-41AE-9D86-BFAD66DA5594.jpeg


34D2D8E9-569C-4F8D-9054-617A4BDE1898.jpeg



We already know not every ME patient has clots, as @Martin aka paused||M.E. tested negative for this. (I don’t know if he is vaccinated or had SARS-COV-2 infection).

They are collecting data and writing the paper at Stellenbosch right now, and in Mülheim, they are collecting ME samples before and after treatment to know if HELP works in ME (this one will take a while since it’s just starting).
I know my results are consistent with their findings, but I think we’ll have to wait for their research to be published to learn more about prevalence.


But here comes my skepticism and why I want the community to be cautious. We don’t really know for sure what these results mean. They theorize this is caused by past microbial infection and that treating it could improve the symptoms, but we don’t know that yet.
Also, we know spike protein (and other viral proteins) causes amyloid microclots. This means recent infection or vaccination will make them visible with this test, and that doesn’t mean pathology. I know from a healthy control that tested positive for microclots that had recent vaccination. In my case, I’m triple vaxed and haven’t had COVID19 (that I’m aware of, we can’t know for sure). Would that affect my results? I don’t know.


The thing is, this is not a standardized test. This is a research tool, and it needs more time and research. That’s why the flux cytometer that Resia, Doug Kell and Polybio are trying to fund is very interesting. This way, they can standardize the test and take it to most hospitals. The question is, if they are capable of discriminating between controls and patients in times of Covid, then we’ll know for sure if this is a real issue in ME and other post viral illnesses.

For those still interested in the test, here’s a how to contact the clinic, costs and my schedule:

  • You should send an email to the gmail account for patients posted on doctor Jaeger’s website. Tell them you want to do the microclot and platelet assessment on the first date available and to see the doctor after to talk about your results. Please give them a couple of days to answer since they are pretty busy. The moment you have your lab date scheduled, call reception and ask for an appointment to see your results with Jaeger the next day. This way, it will be easier for you to talk with her.
  • Microclot test is 250€ and platelet assessment another 250€. You need to pay for this the same day of the test. You’ll also need to pay for the doctor's visit and the labs they order (this depends on what she decides, and I don’t know the exact amount since I’m still waiting for them to send me the invoice).
  • The microscope testing is done in the morning (between 8.00 and 11.00 am) and you can pick your results in the afternoon with a memory USB (I think this might change soon). I saw the doctor after picking up my results, but you can schedule this for the next afternoon and it would be less stressful. Also, remember to take relevant results and history for the doctor to see.
Beware the staff doesn’t speak English very well and that they weren’t prepared for all of this and are a bit overwhelmed. If you have to wait a lot, remember they are doing their best!

You might have already seen the results. I wanted to post it here earlier, but I put a thread on twitter and it kind of blew up (at least for my very very small account, haha) and I’ve been answering q’s there.
Here’s the twitter thread if you want to take a look.



Mods, feel free to move this thread if it’s not in the best place. I hope this dissertation is helpful to someone! I’ll try and check this regularly, maybe we can use this thread to share and discuss our results.
 
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Hip

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Interesting findings, @Akasha. Have you tried any anticoagulants?

Supplements which have significant blood thinning effect include:

Bromelain — enables your body to produce plasmin, which helps to clear away the fibrin that holds blood clots together. Ref: 1

Rutin — targets disulfide isomerase, an enzyme involved in blood clotting. Refs: 1 2

Nattokinase — an enzyme that breaks down fibrin, which may prevent clots from forming and dissolve those that have begun to form. Refs: 1 2

Garlic — inhibits the production of thomboxane, which is involved in blood clots. It also contains ajoene and adenosine, which helps prevent and dissolve blood clots. Ref: 1




The original researcher who looked at blood hypercoagulation in ME/CFS was Dr Dave Berg.

Dr Berg found that 80% of ME/CFS patients have a hypercoaguable state (too much activation of blood coagulation).

And there are now three groups that I am aware of looking at blood clotting in long COVID:
  • Dr Gustavo Aguirre-Chang (Peru) and bioclots.
  • Dr Resia Pretorius and Dr Jaco Laubscher (South Africa) and microclots.
  • Dr Beate Jaeger (Germany) and microclots.

Dr Aguirre-Chang has posted on this forum, see this thread.
 
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Thanks for gathering the info in this thread @Hip !
Interesting findings, @Akasha. Have you tried any anticoagulants?
Jaeger recommended a test of clopidrogrel + heparin for a month and then reevaluate. We preferred to be cautious and not adding ASA since I had some problems with it when I was a kid. I don’t have too much hope about it, but I’ll try and report back.

I have a bottle of Nattokinase at home I haven’t even opened 🤣 There’s promising research on it.
 

BrightCandle

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I also had bad results with Nattokinase, it made me very light headed. Bromelain is better but just be careful about dosing it seems to accumulate over time and a month down the line it will be doing more. The best was Lumbrokinase in my experience but its expensive and hard to get.
 

Alvin2

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Could it be the other way around, ME results in microclots (as does Covid-19)?
As blood thickening and low blood deformation has been found in ME patients though its been hard to quantify, its too variable to use as a biomarker according to OMF.
 

Alvin2

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Interesting findings, @Akasha. Have you tried any anticoagulants?

Supplements which have significant blood thinning effect include:

Bromelain — enables your body to produce plasmin, which helps to clear away the fibrin that holds blood clots together. Ref: 1

Rutin — targets disulfide isomerase, an enzyme involved in blood clotting. Refs: 1 2

Nattokinase — an enzyme that breaks down fibrin, which may prevent clots from forming and dissolve those that have begun to form. Refs: 1 2

Garlic — inhibits the production of thomboxane, which is involved in blood clots. It also contains ajoene and adenosine, which helps prevent and dissolve blood clots. Ref: 1




The original researcher who looked at blood hypercoagulation in ME/CFS was Dr Dave Berg.

Dr Berg found that 80% of ME/CFS patients have a hypercoaguable state (too much activation of blood coagulation).

And there are now three groups that I am aware of looking at blood clotting in long COVID:
  • Dr Gustavo Aguirre-Chang (Peru) and bioclots.
  • Dr Resia Pretorius and Dr Jaco Laubscher (South Africa) and microclots.
  • Dr Beate Jaeger (Germany) and microclots.

Dr Aguirre-Chang has posted on this forum, see this thread.
Very interesting, thanks. I have bookmarked this for future research.
I have tried bomelain for digestion and it had no effect on my ME, but i was not taking it on a consistent schedule as one would for a chronic health issue so i will try it again.
Also i take MK4 (vitamin K2) to no ME effect, K7 (nattokinase) also had no ME effect on me.

Can anyone suggest what dosage of Bromelain to try for ME?
Would once a day be sufficient (i have no idea its half life).
 

Hip

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I have tried bomelain for digestion and it had no effect on my ME, but i was not taking it on a consistent schedule
If I remember correctly, I believe with bromelain, in order to act as a blood thinner it has to be taken on an empty stomach. If taken with food, the enzyme is used up on breaking down the food proteins.

I am not sure what would be an appropriate dose, but the highest strengths I have seen are around 1500 GDU per tablet.
 

Alvin2

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If I remember correctly, I believe with bromelain, in order to act as a blood thinner it has to be taken on an empty stomach. If taken with food, the enzyme is used up on breaking down the food proteins.
Interesting, i most definitely took it with food.
I am not sure what would be an appropriate dose, but the highest strengths I have seen are around 1500 GDU per tablet.
Good to know i will look into whats available.
 
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If I remember correctly, I believe with bromelain, in order to act as a blood thinner it has to be taken on an empty stomach. If taken with food, the enzyme is used up on breaking down the food proteins.

I am not sure what would be an appropriate dose, but the highest strengths I have seen are around 1500 GDU per tablet.
Can we take it sublingually to bypass the need for an empty stomach..? Ie empty the capsule into your mouth.
Or would it just dissolve your mucosa a bit..
 
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Did you say specifically what test they did for endothelial damage?
It’s the same test, don’t truly understand the specifics but depending on the size and amount of the “bigger ones” and their intensity they classify. In my case it was very little endothelial damage, in fact I was I thought I would have more endothelial damage than microclots, who would know?

I always share the same pic when someone asks me, but that’s the only info I have…
 

heapsreal

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How much would inflammation be involved in these clotts? Maybe why statins are helping some with LC as they help reduce blood vessel inflammation and potential clotts breaking away.

Do they know what these clotts are made from ie is it platelets aggregating together , lipids or calcium deposits from blood vessels.
I know there's a big push online to use vit k2 to help prevent calcium building up in blood vessels and reducing heart attack risks. Maybe helpful in ME and LC who have these clotting issues???
Just looking over some of the suggested supps mentioned and it might be worth considering fish oil and as well as vitamin E with mixed tocerophils are good for reducing too much platelet aggregation.
 
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Martin is vaccinated, but he said he had no reaction good or bad to the vaccine when I spoke to him about it. He said he had Pfizer.
Interesting…then not every vaccinated person will have residual clotting. Thanks for the info.
Do they know what these clotts are made from ie is it platelets aggregating together , lipids or calcium deposits from blood vessels.
In Stellenbosch they analyzed the contents (not mine specifically) and found a myriad of inflammatory molecules and coagulation proteins trapped inside. The interesting part is that the fibrin that forms these clots is amyloid and they are resistant to fibrinolysis.

Don’t know if Resia’s team checked ME’s microclots contents with a mass spectrometer. We’ll know more about this when they publish the article.
 

Violeta

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SNT Gatchaman

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Would someone with microclots be more likely to hive high CRP, fibrinogin, and platelets on a blood test?
Platelet numbers may well be normal. Demonstrating whether they are actually hyperactivated is tricky. Once out of the circulation, I believe that pretty much just looking at them sets them off.

Fibrinogen itself is interesting. I'm suspicious that true values may actually be high or even very high (hyperfibrinogenaemia) in LC±ME, but that the standard clinical assays might be reading erroneously normal/low.

The assay indirectly quantifies fibrinogen by seeing how long it takes for fibrinogen to form a fibrin clot (the Clauss method).

To determine plasma fibrinogen concentration, several assays have been developed. The most frequently used in a diagnostic routine is the Clauss assay: a method based on clotting time that measures the ability of fibrinogen to be enzymatically converted to a fibrin clot. In principle, diluted citrated plasma is activated with a high concentration of thrombin, and the clotting time is inversely proportional to the functional fibrinogen concentration.
Glycated fibrinogen makes functionally poorer clots and hyperglycaemic patients will read erroneously low on this assay.

... fibrinogen concentration measured by the Clauss method significantly decreased with increasing glucose contamination (0–5–10–20%)
If fibrinogen in LC is defective and/or abnormally glycated due to associated metabolic derangements, then it too might read artificially low. Functional intact fibrinogen might be a more accurate indicator of hyperfibrinoginaemia.

the functional intact fibrinogen test (FiF), a monoclonal antibody-based assay that measures the amount of fibrinogen antigen, may be a better overall predictor of the overall risk of cardiovascular disease.
Paper #1, despite being a pre-print, may warrant its own thread as the authors are published on this subject in Nature (pre-Covid).

Refs:
  1. SARS-CoV-2 spike protein induces abnormal inflammatory blood clots neutralized by fibrin immunotherapy (Preprint 2021)
  2. Fibrinogen Glycation and Presence of Glucose Impair Fibrin Polymerization—An In Vitro Study of Isolated Fibrinogen and Plasma from Patients with Diabetes Mellitus (2020)
  3. Glucose Concentration Affects Fibrin Clot Structure and Morphology as Evidenced by Fluorescence Imaging and Molecular Simulations (2018)
  4. Determinants of Increased Fibrinogen in COVID-19 Patients With and Without Diabetes and Impaired Fasting Glucose (2021)