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

[Gingergrrl]

My IGM and IGA were negative. MD said IGG not over 40 so not going to cause a clot so best forget about it.

Thank you and I appreciate the info! Do you happen to know if you were also tested for lupus coagulant (LA) antibody? And no worries if you don't know!

 

[Nine lives]

Sadly I wasn't. Thanks for your interest!

 

[Gingergrrl]

Sadly I wasn't. Thanks for your interest!

Thanks again (and I am selfishly trying to figure this out re: my own situation!) It is so helpful to ask others questions who also tested positive for anti-cardiolipin. In the past, I've tested positive for 11 autoantibodies and am kind of upset that there is now a 12th (although I guess I shouldn't be ). I am actually just in the information gathering stage now re: the APS/Hughes Syndrome autoantibodies.

 

[Zebra]

I responded to the poll.

My ESR results, going back 11 years!, have always been normal, and often quite low.

Additionally, I once had an elevated d-dimer and high suspicion for pulmonary embolism, but emergent CT scan was negative for PE.

A few years later, during routine CBC, an elevated platelet count was noted.

In my medical experience the ESR test has been used to test me for signs of inflammation, not coagulation. My doctors have used d-dimer, platelet counts, PTT/INR, etc. for thrombolytic assessment.

 

[Pyrrhus]

@Martin aka paused||M.E. shared some pictures of red blood cells in a rouleaux formation during PEM, but not at baseline. Does this mean that ESR (sed rate) might increase during PEM?

If so, this might be a non-specific indication that PEM is an inflammatory process, which would be significant since we still know so little about the pathophysiology of PEM.

...And it might mean that the timing of the ESR (sed rate) test is important.

Josh found sth very interesting. RBC clotting in a crash but normal when at baseline.
He has 200 patients in his study now.
Pics shared with permission:

 

[Shanti1]

@Pyrrhus
If Josh's findings are consistent, I would think ESR would definitely go up during PEM. PEM sure FEELS inflammatory, and it would be great to have an inflammatory marker to prove it! I couldn't find any studies checking ESR pre-PEM and during PEM. Rouleaux formation can also cause microvascular occlusion and contributes to diabetic neuropathy, so it links in with symptoms of poor oxygen delivery and SFN.

Stat Pearls Erythrocyte Sedimentation Rate
https://www.ncbi.nlm.nih.gov/books/NBK557485/
The fluctuating nature of the acute phase proteins in inflammation leads to the increased "stickiness" of RBC's, the formation of RBC "stacks" (rouleaux formation), and an increase in ESR.

 

[HealingFalcon]

Increased:
D Dimer
Prothrombin
Faktor 8
Antiplasmin
ESR

 

[SNT Gatchaman]

Hypercoagulable TEG (informal).

 

[junkcrap50]

Hypercoagulable TEG (informal).

View attachment 46074

Is this your test result? Or just an example?

 

[SNT Gatchaman]

That's mine - informal.

 

[Zebra]

Increased:
D Dimer
Prothrombin
Faktor 8
Antiplasmin

Hi, @HealingFalcon

Do you mind if I ask of your doctor offered any explanation and/or treatment for these abnormalities?

Seems like they should be taken quite seriously.

Thanks in advance!
Z

 

[SWAlexander]

I´m taking this chance repeating myself about vWF F2, F5 (Leiden) and F8.

Factor 8: Fibrinogen, red blood cells, and factor XIII in venous thrombosis: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5975093/
ESR is not specific for any one disease but is used in combination ... increase in inflammatory / autoimmune disorders. Beta thalassemia trait also have a raised ESR
Factor 2: prothrombin mutation- https://www.stoptheclot.org/learn_more/prothrombin-g20210a-factor-ii-mutation/
Factor V and Leiden: Factor V Leiden and factor II G20210A mutations

So far no one has paid attention to: X-ALD Very Long Chain Fatty Acids (VLCFA) in relation to ME/CFS:
Long-chain fatty acid oxidation disorders (LC-FAODs) are rare, life-threatening, autosomal recessive genetic disorders characterized by acute crises of energy production and chronic energy deficiency.

Fatty acid oxidation disorders are rare health conditions that affect how a body breaks down fat. Fatty acid oxidation disorder can't use fat for energy. This can cause low blood sugar and harmful substances to build up in his blood.
There are many papers on google.

 

[HealingFalcon]

Hi, @HealingFalcon

Do you mind if I ask of your doctor offered any explanation and/or treatment for these abnormalities?

Seems like they should be taken quite seriously.

Thanks in advance!
Z

I requested these parameters by myself and my doctor ignores them...

But I went to HELP apheresis over a month ago as I have very high triglycerides, LDL, and two homozygotous SNPs for familiar hypercholesteria...(insurance covers a quarter). It crashed me too much to do any further treatments until now and I had to cancle the last three sessions.

Also, I take serrapeptase and rupafin against coagulation. My doc would prescribe aspirin, but I have severe MCAS and don't tolerate it.

 

[Countrygirl]

I had a 23andME test last December and it alerted me to a blood clotting disorder. I asked the doctor if I could be tested to discover which one, but was told that 'there is no point'.

I started experiencing a number of small blood clots from the age of 15 throughout my adult life (4 years before the severe infection that triggered ME) and these would cause painful swellings until they burst, leaving a large bruise the size of a saucer. In recent years, I have had a stroke in the basal ganglia, a number of TIAs, and most unpleasantly of all, a blood clot in the retinal artery a few months ago that has damaged my sight. It was after this that the doctor declined to test for a blood clotting disorder that is also evidenced by early death in my family, according to the death certificates that I have traced back to 1837.

I filled in the poll but because I had genetic testing that indicated a blood clotting disorder I ticked the coagulation box even though the doctor declined to test. Hope that is okay.

 

[SWAlexander]

Countrygirl: I had the same warning from 23andme back in 2010 and I told this Dr`s in the hospital in NM USA before my surgery. It was dismissed, even later as the first thrombosis in my left arm was discovered.
Now, I am in Germany, I had a very good Hematologist and he tested all vWF Factor. The results confirmed my DNA results.

 

[SWAlexander]

Interview with Dr. Resia Pretorius: LongCovid microclots (spike protein, apheresis + other topics)
Dec 18, 2021

 

[Akasha]

My ESR was 2 in my last lab work. The highest it has been was 9 in 2008, and it looks to slowly lower with the years.

My coagulation labs have always been normal. I had one specific coagulation panel back in 2006 (I was mild back then) with normal values for:
- PFA 100 COL/EPI
- D-DIMER
- Factor V
- Euglobulin lysis
- Fibrinogen/Prothrombin/Thrombin times and ratios...

Does this mean that ESR (sed rate) might increase during PEM?

I think so, but I don't get why, since usually we have low ESR.
Rouleaux occurs when there are high protein levels in the blood (like fibrinogen) and it produces a high sedimentation rate. Hyperviscosity is what lowers ESR.

 

[Consul]

According to wiki rouleaux formation is retarded by albumin proteins, maybe that could be a pem buster.

 

[SWAlexander]

2/ In the interview Resia talks about how her research team has identified microclots resistant to fibrinolysis + hyperactivated platelets in the blood of #LongCovid patients. We also discuss how we are planning to extend the research to #ME/CFS

https://twitter.com/i/web/status/1472595623451009031

 

[SWAlexander]

Long Covid vs ME/CFS | Why There's Much We Can Learn From The Similarities
In this film I talk to Dr Ronald Tompkins MD, chief medical officer of the Open Medicine Foundation and co-director of the ME/CFS collaboration at Harvard affiliated hospitals - to find out just what we do, and don't know about ME/CFS - and how relevant those lessons are for Long Covid. Discussion includes the current hot topic microclotting, along with mitochondrial dysfunction, autoimmunity, gut microbiome, MCAS, dysautonomia, POTS and that old chestnut, the HPA axis. CONTENTS: 0:00 Introduction 2:43 HPA Axis down-regulation 5:00 Associated symptoms 6:04 Microclotting 7:28 Metabolism dysfunction 9:12 My PEM theory 11:57 Gut / Microbiome dysfunction 13:25 MCAS 15:30 Antihistamines 17:20 Dysautonomia / POTS 20:30 Risk factors / Who Gets It? 24:05 Autoimmunity 26:50 Dream Research Project 29:25 How Well Understood is ME/CFS? 31:06 Long Covid vs ME/CFS 33:45 Conclusion