Have you had a clot or labs that show a hypercoagulative state?

Have you had a blood clot or labs showing hypercoagulation potential?

  • I have had a clot (could be in extremities, brain, lung, heart or other)

    Votes: 4 11.4%
  • I have had labs which show increased coagulation potential (please let us know which ones)

    Votes: 10 28.6%
  • I have had both a clot and abnormal coagulation labs

    Votes: 2 5.7%
  • I have not had a clot or abnormal coagulation labs

    Votes: 8 22.9%
  • My ESR (Sed Rate) is very low <3

    Votes: 18 51.4%
  • My ESR is within normal, but >3

    Votes: 4 11.4%
  • My ESR is above the reference range

    Votes: 1 2.9%
  • I have not had coagulation tests

    Votes: 6 17.1%
  • I have not had my ESR tested

    Votes: 2 5.7%

  • Total voters
    35

Shanti1

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Hypercoagulation and low RBC deformability (inability to bend and pass through capillaries) have both been proposed as contributing to ME/CFS symptoms by impeding oxygen delivery to tissues and the brain.

I'm interested in what coagulation tests look like in our group and Erythrocyte Sedimentation Rate (ESR), which tends to be low in pwME, probably due to low red blood cell deformability.

Here is the study from which theories of hypercoagulation are derived: https://pubmed.ncbi.nlm.nih.gov/10695770/

Here is the study showing alterations in RBC in pwME, including low RBC deformability. The abstract also explains how these RBC changes result in a low ESR: https://ashpublications.org/blood/a...rocyte-Deformability-As-a-Potential-Biomarker

Of note, most overt hypercoagulation states will result in an elevated ESR (ref)(ref)(ref)(ref)(ref)

In contrast, pwME tend to have a low ESR, likely due to low RBC deformability. Interestingly, blood hyperviscosity syndromes of all types result in a low ESR. Low RBC deformability is one cause hyperviscosity:
https://www.researchgate.net/public...cosity/link/0c960531ed0dd3724f000000/download (download the free full text)

For those interested, you can also view the results of Cort's 2019 ESR poll here
 

Judee

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Ken Lassessen also talks about hypercoagulation a lot on his website. Here's one page and a quote. He also talks about a Hemex test on another page which was developed by Dave Berg before Dave retired. (APS being Antiphospholipid Syndrome.)

https://cfsremission.com/treatment/thick-blood-clots-dimension-of-cfs-etc/

"There are a list of infections associated with CFS. By associated I mean that CFS patients may have infection H, 45% of the time and the general population 5% of the time. Since ALL CFS patients do not have H, then it must not be the cause…. When I compared the list of CFS infections to those associated with APS, they were the same list…. All of the CFS associated infections (EBV,Lyme, Rickettsia, CMV, etc) are known to trigger coagulation. Coagulation that is not fully cleared up because of some inherited coagulation defect…."

Anyway, just some additional thoughts.
 

Shanti1

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Ken Lassessen also talks about hypercoagulation a lot on his website. Here's one page and a quote. He also talks about a Hemex test on another page which was developed by Dave Berg before Dave retired. (APS being Antiphospholipid Syndrome.)

https://cfsremission.com/treatment/thick-blood-clots-dimension-of-cfs-etc/
Great link and info @Judee and it also serves as a reminder that just because the tests we have had for coagulation were normal, doesn't mean it isn't an issue as it could show up on a different set of tests.

The tests used in the study by Dr. Berg and on his ISAC panel are: Fibrinogen, Prothrombin Fragment 1+2, Thrombin/ AntiThrombin Complexes, Soluble Fibrin Monomer, and Platelet Activation by flow cytometry. He also found anti-B2GPI antibodies.

These are a different set of tests than used by this study which found no correlation with ME and clotting, and probably a different set of labs than what we would get if we ask our doctor to test us for hyper-coagulation.
 

Gingergrrl

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I did not vote b/c my diagnosis is not ME/CFS (but 3 other autoimmune diagnoses plus MCAS) and I do not want to mess up your results!

But I am posting b/c I recently tested positive for "Anti-Cardiolipin antibody" (one of the auto-antibodies in Antiphospholipid Syndrome) in which one of the main symptoms is blood clots (although I have never personally had a blood clot). My ESR/Sed Rate was "9" and the normal range went up to 40 (so my ESR was totally normal). I am posting this in case this is somehow relevant to your poll question.
 
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Shanti1

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I believe there might be different laboratory methods for measuring ESR...

I have a 6 on this test:
I pulled Quest and LabCorp (biggest labs in the US) sample reports for ESR by modified Westergren and they both use the reference ranges below, which is what I'm used to seeing. I think your test is using the same? I'm not sure of the OR=15 meaning....

Reference Interval
• Male: 0 to 50 years: 0−15 mm/hour, 50 years and older: 0−30 mm/hour
• Female: 0 to 50 years: 0−32 mm/hour, 50 years and older: 0−40 mm/hour
 
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Gingergrrl

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Thanks for posting and sharing your info. I wouldn't be surprised if PWME also have a higher incidence of antibodies associated with APL syndrome.
I was actually curious about that in light of this thread, and another thread on PR that I am just starting to read, re: Apheresis & Long COVID and/or ME/CFS. I don't want to take this thread off track and plan to comment in the other thread when I have time. I am just curious in both Long COVID & ME/CFS what the connection is to the Antiphospholipid Autoantibodies (or if this has not been checked in many people)?
 

ChookityPop

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I have tested positive for APS autoantibodies two times now. I will test again in two weeks since thats the 3 month mark from my first test and apparently you need to test positive twice with a 3 month gap to be considered to have APS.

Β-Cardiolipine IgG: 35 (<10),
β-Cardiolipine IgM: 6 (<10),
P-Beta2-Glycoprotein I IgG: 30 (<10),
P-Beta2-Glycoprotein I IgM: <1 (<10),
 
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Shanti1

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I was actually curious about that in light of this thread, and another thread on PR that I am just starting to read, re: Apheresis & Long COVID and/or ME/CFS. I don't want to take this thread off track and plan to comment in the other thread when I have time. I am just curious in both Long COVID & ME/CFS what the connection is to the Antiphospholipid Autoantibodies (or if this has not been checked in many people)?
I'm not aware of a connection between Long-COVID and antiphospholipid antibodies, but it seems pwME CFS may be prone to variations of antiphospholipid syndrome.
This original study found elevated P-Beta2-Glycoprotein antibodies and this write-up has info on Anticardiolipin antibodies in pwME.
 

sb4

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Mine seem to be low but also vary quite a bit. My reference range (0-10) is lower than everyone elses. I marked very low < 3 on the poll but now I'm thinking that might not be accurate.
Results of multiple tests over the years:
2, 5, 2, 2, 8, 26, 2.
The random 26 value was probably due to some active infection or something. Along with that test I had things like high C Reactive Protein, and Eosinophils, which usually isn't the case.
 

Gingergrrl

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I have tested positive for APS autoantibodies two times now. I will test again in two weeks since thats the 3 month mark from my first test and apparently you need to test positive twice with a 3 month gap to be considered to have APS.
In addition to the autoantibodies that you listed below, did you also test positive for Lupus Anticoagulant Ab (LA)? I did not realize that you had to test positive twice within a 3-month period to be considered to have APS. I am waiting to discuss this general issue w/my doctor (and from my initial test, he said that I do not have APS).

Β-Cardiolipine IgG: 35 (<10),
β-Cardiolipine IgM: 6 (<10),
P-Beta2-Glycoprotein I IgG: 30 (<10),
P-Beta2-Glycoprotein I IgM: <1 (<10),
This is interesting, too, and I was not tested for Beta2-Glycoprotein autoantibody so I don't know if I am positive or negative. The test I had (from LabCorp in the US) was the ANA Profile that also includes 12 different autoantibody tests (in addition to ANA Titer & Pattern).

It included three different Anti-Cardiolipin Tests for IgG, IgM & IgA. I was negative for IgG and IgA but was positive for IgM (although the reference range was different than what you posted above). My IgM (for anti-Cardiolipin Ab) was "14" and was flagged as abnormal but, per their range, it is just barely positive b/c under "13" is considered negative, "13 to 20" is considered "Indeterminate", "over 20" is considered low to medium positive, and "over 80" is considered "high positive".

This makes me wonder if I am just newly positive for the IgM for anti-Cardiolipin (since my IgG is negative) or if it doesn't work that way? I'm also wondering if I should repeat the test at the interval that you mentioned and also add in the other autoantibodies for APS/Hughes Syndrome that I was not tested for. I really would like to know if there is any chance that I am now considered to be an increased blood clot risk. Although from 2016 to 2018 I did high dose IVIG and never had a blood clot (or even anything that clogged up my IV line in my arm).

I'm not aware of a connection between Long-COVID and antiphospholipid antibodies, but it seems pwME CFS may be prone to variations of antiphospholipid syndrome.This original study found elevated P-Beta2-Glycoprotein antibodies and this write-up has info on Anticardiolipin antibodies in pwME.
Thank you and that is really helpful and I am going to look at the links.

A few years ago tested twice for anticardiolipin antibodies IGG - 26 and 28 respectively. Not over 40 so no anticoagulation.
Were you also tested for IgM or IgA for anti-cardiolipin (or only for IgG)? Also, were you tested for the other main APS autoantibody, Lupus Anticoagulant (LA)? When you said "not over 40" did you mean the lab result for the IgG or something else?