Martin aka Paused and H.E.L.P treatment

[Martin aka paused||M.E.]

Wow, thanks for sharing these findings with us. May I ask if your standard lipid profile shows elevated cholesterol or triglycerides? I remember that you had very elevated LpPlac2, which surely ties in. Thanks!

I have high cholesterol and especially very high LDL levels braids Lp-PLA2 which is completely out of control.

 

[Martin aka paused||M.E.]

The thing is that ketonic diet did not change anything. Last year I experimented with high quality oils without any effect. So I’m not sure if that’s the solution to change it through diet.

 

[SWAlexander]

The thing is that ketonic diet did not change anything. Last year I experimented with high quality oils without any effect. So I’m not sure if that’s the solution to change it through diet.

Ketogenic diet totaly goofed up my colon, because it consist of about 75% fat, 10-30% protein and no more than 5% or 20 to 50 grams of carbs per day.

 

[lenora]

Thanks @ Martin for giving us the info as soon as you were able. I hope you're doing better.

Also, a big thanks to everyone who has something to offer re: high triglycerides & high cholesterol. As I'm probably one of the oldest ME patients around, I have both of these, plus high BP. 6 stents have taken care of things thus far, but I still need more. Of course I realize that I won't live forever; that's not my aim.

If your doctor asks for a stress test, please ask him for a chemical test as I understand from cardiologists that this is now considered the most reliable and has good technology behind it.

I have very high cholesterol, triglycerides & the said BP. It's very frustrating as my diet has been and still is a good one. I'm presently on statins (which work, but have side effects) and no, as far as I know, not a lot is known about a tie-in between these problems and people with ME. It's interesting and I don't know of any researchers here that are working on this angle. I'm wondering why this info isn't shared, unless it's very new. Just interesting! Yours, Lenora.

 

[SWAlexander]

SARS-CoV-2 Antibodies Are Persisting in Saliva for More Than 15 Months After Infection and Become Strongly Boosted After Vaccination
SARS-CoV-2 antibodies in saliva serve as first line of defense against the virus. They are present in the mucosa, more precisely in saliva, after a recovered infection and also following vaccination. We report here the antibody persistence in plasma and in saliva up to 15 months after mild COVID-19. The IgG antibody response was measured every two months in 72 participants using an established and validated in-house ELISA assay. In addition, the virus inhibitory activity of plasma antibodies was assessed in a surrogate virus neutralization test before and after vaccination. SARS-CoV-2-specific antibody concentrations remained stable in plasma and saliva and the response was strongly boosted after one dose COVID-19 vaccination.
https://www.frontiersin.org/article...T&utm_campaign=ECO_FIMMU_XXXXXXXX_auto-dlvrit

 

[Countrygirl]

The HELP FB page has just uploaded this paper with this introduction.

CHRONIC COVID (Long COVID), SFC/ME, FM:
"THERAPEUTIC TEST" AND FIRST TREATMENT SCHEME
FOR PATIENTS WITH CHRONIC FATIGUE AND BRAIN FOG TO ASSIST THE DIAGNOSIS OF PERSISTENT CLOTS
AND HYPOPERFUSION.
https://www.researchgate.net/.../355757939_CFSME_FM...
For patients with Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Fibromyalgia, Persistent Symptoms of COVID (Chronic COVID or Long COVID), Chronic Lyme, Herpesvirus, EBV, Bartonela, Babesia, Enterovirus, HPV, Gulf War Disease, Alzheimer's and others Diseases that present Chronic Fatigue and Brain Fog.
Based on scientific publications and our clinical experience, we have argued that the main cause of Chronic Fatigue, Brain Fog and Dysautonomia symptoms is long-term endothelial dysfunction, that is, an inadequate functioning of the blood vessels, and in a A high percentage of this dysfunction is accompanied by endothelitis and the presence of persistent bioclots, which are adhered to the vascular walls and also intravascularly.

We have observed that the degree of affectation is variable, there being a correlation between the severity of fatigue and brain fog, with the presence of persistent bioclots, that is to say that, with greater symptoms and the functional disability that this entails, it is presumed that there is an increased presence of persistent bioclots.

These are then vascular diseases, in which there is often no obvious damage to the tissues, so most of the tests that are routinely requested tend to be normal, such as X-rays, CT scans and laboratory tests of routine.
In the same way, the tests to evaluate coagulation that are usually requested are generally normal, since these tests are aimed at evaluating the processes related to the formation of clots and the risk of bleeding, and what happens in Chronic COVID and Chronic Fatigue Syndrome is an inhibition of the body's Fibrinolysis System, that is, there is a problem that consists of the body not breaking down or destroying existing clots, so they persist, and this alteration is not detected with routine exams.

Before proceeding to apply the "Therapeutic Test" that we present and describe in this document, the patient must perform the following 2 analyzes:

1) DIMERO-D: it should be emphasized that this analysis does not measure the formation or the existing amount of clots, what it measures is the breakdown or fibrinolysis of the clots present in the body. So, if there are persistent clots, and the patient is not taking any medications, supplements, or foods with anticoagulant or fibrinolytic effect, the D-dimer may turn out to be normal or only slightly increased.

2) MEASUREMENT OF VENOUS BLOOD GASES: useful to know the Venous Oxygen Saturation (SvO2 or Sat vO2).

At the end of the "Therapeutic Test", which consists of taking medications or supplements with antiplatelet, anticoagulant and/ or fibrinolytic effects for 6 days, the symptoms of fatigue and brain fog, as well as the 2 aforementioned tests, should improve significantly, thus the Test result would be POSITIVE for Persistent Clots and Tissue Hypoperfusion.
If the patient could not undergo at least the D-Dimer, to interpret the result of the Test only the clinical response will be evaluated, since, if there is a significant improvement in Fatigue, Brain Fog and symptoms of Dysautonomia, it would be understood that the medications have worked by breaking down clots and these would be the cause of the symptoms.

Before taking supplements or medications with effects on clotting for several days, the risk of bleeding should be evaluated, especially in people with a history of ulcers or increased acid in the stomach and duodenum, and in older adults






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Comment

 

[andyguitar]

if there is a significant improvement in Fatigue, Brain Fog and symptoms of Dysautonomia, it would be understood that the medications have worked by breaking down clots and these would be the cause of the symptoms.

Er... no it isnt possible to say that the medications have broken down clots. Or that clots are present. Or that the clots (if they exist) are causing symptoms. The drugs/supplements listed could have a range of benefits that have nothing to do with clots.

 

[SWAlexander]

Er... no it isnt possible to say that the medications have broken down clots. Or that clots are present. Or that the clots (if they exist) are causing symptoms. The drugs/supplements listed could have a range of benefits that have nothing to do with clots.

Correct: I am on Xarelto since May 21 still have clot´s - D-Dimere 2985. Before medication D-Dimere 3003.
In addition side effects extreme sleepiness 1 hour after taking Xarelto.

 

[BrightCandle]

It took a lot more than the listed to make any dent on my thick blood so I highly doubt its beginning to do much of anything on microclots at the day 6 point. I didn't notice the drugs impact at all for 2 weeks, its barely getting to any normality on week 6.

 

[BrightCandle]

Adding baking soda has almost immediately fucked me up. Blood pressure has shot up and I feel dizzy and really unwell. I am stopping, the effect is obvious and whatever good it might do its had my guts in arggh mode since taking it and its made me really unwell and sent me straight to bed for a day.

 

[bensmith]

I think i had the same issue with baking soda.

 

[Marylib]

@Countrygirl
So now it's a big celebration on twitter that the micro-clots have been identified in a Long Covid person in New Zealand. I guess I am wondering if anyone who is past the early stages with ME has had any benefit? There seems to be a tendency to lump everyone into the same group. Is the general hypothesis that by continually removing the clots a person with ME can recover? Somewhat analogous to the way a person with kidney disease needs dialysis? It's quite confusing.

https://twitter.com/i/web/status/1469194810053566466

 

[bensmith]

@Marylib that one girl with severe me(couch bound iirc, wheelchair) recovered. 7 years ill. Not sure if they identified micro clots but she recovered greatly with help.

i feel you though.

 

[Countrygirl]

@Countrygirl
So now it's a big celebration on twitter that the micro-clots have been identified in a Long Covid person in New Zealand. I guess I am wondering if anyone who is past the early stages with ME has had any benefit? There seems to be a tendency to lump everyone into the same group. Is the general hypothesis that by continually removing the clots a person with ME can recover? Somewhat analogous to the way a person with kidney disease needs dialysis? It's quite confusing.

https://twitter.com/i/web/status/1469194810053566466

Ben has already answered, but there was also the UK ME patient who required 14 cycles to experience considerable improvement. I don't know if he was actually cured though or just massively better.

 

[bensmith]

I should clarify, major improvements but not sure if cured. She is apparently walking multiple kilometers now though. even if i was still
Sick the imrpovement would Be so major I’m sure it would feel like cured.

 

[mitoMAN]

Ben has already answered, but there was also the UK ME patient who required 14 cycles to experience considerable improvement. I don't know if he was actually cured though or just massively better.

14 cycles so that's about 18 200€ for the HELP.
Hopefully it's a one time Investment and won't need continuous application

 

[Countrygirl]

14 cycles so that's about 18 200€ for the HELP.
Hopefully it's a one time Investment and won't need continuous application

They seem to be aiming at finding a combination of anticoagulants to replace the micro clots. It wouldn't work on lipids and other debris though which would still require apheresis.

 

[elvira]

The ME study by Pretorius that will begin next year, what is it about? Are they looking for micro clots in ME patients as well?

 

[Marylib]

@Marylib that one girl with severe me(couch bound iirc, wheelchair) recovered. 7 years ill. Not sure if they identified micro clots but she recovered greatly with help.

i feel you though.

I am happy for her. I guess I am always a bit weary when someone looks at only one part of the story.

 

[bensmith]

@Marylib yes. I’m sure there will be more shortly.