Sticky Blood

[paul80]

I told my GP about the sticky blood thing and they took my blood for a coagulation test. Results say i don't have sticky blood. I have severe M.E and
have terrible circulation, coldness etc. so not sure whether to believe it.
Can i trust this test?

I was thinking about trying the high dose nattokinase or similar supplements, have people here tried this and found it effective?

 

[Wishful]

I don't recall the details of the study, but I don't think it claimed that 100% of PWME had abnormally sticky blood. If that had been true, we'd have that as a clinical marker for ME. So, I think the test is fine, and that it simply doesn't mean much regarding ME severity.

As for the effectiveness of any treatment for ME: it depends on you, so the only way to know whether it works for you is to try it yourself. It might work for someone else, yet not work for you. If a treatment is reasonably cheap and safe, there's no reason not to try it.

 

[paul80]

I don't recall the details of the study, but I don't think it claimed that 100% of PWME had abnormally sticky blood. If that had been true, we'd have that as a clinical marker for ME. So, I think the test is fine, and that it simply doesn't mean much regarding ME severity.

Yeah good point, Must be something else causing the circulation problems. I'm hoping the BC007 is the answer.

As for the effectiveness of any treatment for ME: it depends on you, so the only way to know whether it works for you is to try it yourself. It might work for someone else, yet not work for you. If a treatment is reasonably cheap and safe, there's no reason not to try it.

If i don't have sticky blood then i don't think that treatment is recommended though.

 

[redsun]

I told my GP about the sticky blood thing and they took my blood for a coagulation test. Results say i don't have sticky blood. I have severe M.E and
have terrible circulation, coldness etc. so not sure whether to believe it.
Can i trust this test?

I was thinking about trying the high dose nattokinase or similar supplements, have people here tried this and found it effective?

Circulation issues and cold intolerance is more likely due to iron deficiency anemia, iron deficiency (without obvious anemia on CBC), and/or hypothyroidism. These issues will also contribute to CFS if untreated.

 

[Shanti1]

They may have just done a PT/PTT, which I think is normal for a lot of people with ME. It has been reported that some pwme have elevated antibodies that can lead to an increase in clotting (antiphospholipid syndrome), and that we have less flexible red blood cell membranes.

Anemia and hypothyroid have to be ruled out, but a lot of us have problems with regulation of circulation and temperature as part of our ME/CFS picture. It could be due to endothelial dysfunction, or some sort of peripheral or central dysregulation of the nervous system (dysautonomia). For me personally, I became less sensitive to cold after taking the antiviral valacyclovir (which I still take). I tried nattokinase, bromelain, and serrapeptase, as well as baby aspirin about a year ago when there was so much talk about microclots here on the forum. For me they were not helpful, but his doesn't mean you shouldn't try them.

 

[Wishful]

If i don't have sticky blood then i don't think that treatment is recommended though.

Do cumin or T2 have solid theories for why they would help with ME? No, but boy were they effective for me. We don't know what will work for our individual ME, but we also don't know what won't work, so anything is a potential treatment. It's all a matter of what you feel is worth trying. If a super-expensive and hazardous treatment is just as (un)likely to work for you as a cheap spice or fruit, you may as well give the latter a try first.

If two potential treatments are equally likely or unlikely to work, I go for the yummier one first.

 

[SNT Gatchaman]

Basic clinical tests may well be normal. Some insight from Covid studies that I expect could be relevant for ME—

Analysis of thrombogenicity under flow reveals new insights into the prothrombotic state of patients with post-COVID syndrome (2023, J Haemostasis Thrombosis)
Transcriptional reprogramming from innate immune functions to a pro-thrombotic signature by monocytes in COVID-19 (2022, Nature Comms)

• Post-COVID syndrome is an emerging condition linked to an uncharacterized prothrombotic state.
• We studied thrombogenicity using a range of tests, including a novel microfluidic assay.
• Post-COVID syndrome can lead to increased platelet recruitment and larger thrombi under flow.
• The median time of 23 months from symptom onset suggests potential long-term thrombogenicity

COVID-19 monocytes switch their gene expression pro!le from canonical innate immune to pro-thrombotic signatures and are functionally pro-thrombotic, both at baseline and following ex vivo stimulation with SARS-CoV-2. Transcriptionally, COVID-19 monocytes are characterized by enrichment of pathways involved in hemostasis, immunothrombosis, platelet aggregation and other accessory pathways to platelet activation and clot formation.

 

[paul80]

What's T2 ? Google's not helping.

 

[Wishful]

What's T2 ?

3-5 diiodothyronine, the next thyroid hormone in line after T4 and T3. I've written my experiences with it elsewhere, so a search for diiodothyronine should show them up.

It worked great for me, despite supplemental T4 and T3 not helping. Other people have tried it but reported no significant benefits. There was at least one T2 product available on Amazon last I checked. Supplemental iodine worked just as well for me, since part of it gets used to create T2, so if that's easier to obtain (I used tincture of iodine), you could see if that has any effect.

 

[Lieselotte]

If you are talking about hypercoagulation, I would wonder if they ran the right tests.

Here are the testing measures (notice, no ESR here):

• Thrombotic Marker Panel
• D-dimer
• Soluble fibrin monomer
• Prothrombin Fragment 1+2
• Thrombin antithrombin complex
• PAI-1 number (activity degrades quickly)
• PAI-1 4G/5G genetic test (4G/4G (about 15% incidence) and 4G/5G have up to a 10 fold increase risk of thrombotic event and IAC)(also increased CA risk)
• Protein C/S activity
• Elevated fibrinogen
• Low PTT
• Low PTT, elevated fibrinogen, increased LP(a) and high homocystine make more likely

Here's a presentation with the information, starting slide 58.
https://restorativemedicine.org/wp-content/uploads/2017/01/4Holtorf_-Lyme-CFS.pdf

 

[Violeta]

Have you seen this article by Cort?

https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/

 

[lenora]

Is there a specific test for ME? I've never heard of one....and a conclusion is generally reached by ruling other illnesses out. If there is a test, I'd be interested in hearing more about it.

I'd say cold is very common with us and many others, especially as we age. Many of us seem to have no heat regulation either. One extreme or the other....I've been that way since childhood. I think I'm doomed to spend all of my life as either hot or cold....but never moderate. Yours, Lenora

 

[SWAlexander]

Must be something else causing the circulation problems.

Could you see a hematologist? Sticky blood, cold hands and feet, in my case was Antiphospholipid syndrome (APS).

 

[tyson oberle]

I told my GP about the sticky blood thing and they took my blood for a coagulation test. Results say i don't have sticky blood. I have severe M.E and
have terrible circulation, coldness etc. so not sure whether to believe it.
Can i trust this test?

I was thinking about trying the high dose nattokinase or similar supplements, have people here tried this and found it effective?

I tried high doses of nattokinase for a month but still had ice cold hands and feet and cold intolerance. I also separately tried high doses of lumbrokinase and serrapeptase for a month each as well, but I felt nothing different.

 

[tyson oberle]

Could you see a hematologist? Sticky blood, cold hands and feet, in my case was Antiphospholipid syndrome (APS).

I see that one of the symptoms of APS is high blood pressure. I always have normal blood pressure or a little on the low side

 

[SWAlexander]

I always have normal blood pressure or a little on the low side

I also have low blood pressure (105 over 65) until I have an acute infection (sepsis or Covid).

 

[Violeta]

Laboratory studies have shown that ginkgo improves blood circulation by opening up blood vessels and making blood less sticky. It is also an antioxidant. For those reasons, ginkgo may improve vein and eye health.

 

[paul80]

Laboratory studies have shown that ginkgo improves blood circulation by opening up blood vessels and making blood less sticky. It is also an antioxidant. For those reasons, ginkgo may improve vein and eye health.

Is ginkgo ok to take if you have low blood pressure?

 

[lenora]

Hi Paul.....I would put in a call to your doctor, his P.A. or even someone who knows what they're dealing with at a Compound Pharmacy. A lot would depend on the amount taken and interactions with other drugs. Good luck...and you'll get an answer sooner or later. Yours, Lenora

 

[SWAlexander]

I see that one of the symptoms of APS is high blood pressure. I always have normal blood pressure or a little on the low side

Again I would like to encourage you to see a hematologist to have your "sticky blood" checked first for possible "von Willebrand Factor" (vWF).

There are other possibilities to research.
If you have a "23andme" DNA you could look for specific "rs".
Nevertheless, it would need a hematologist to confirm any discovery.