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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS,FM: Use of Anti-Platelets, Fibrinolytics, Anticoagulents, Vasodilators and Other Medicines/Supplements with Favorable Effects on Blood Vessels.

Shanti1

Administrator
Messages
3,203
Thanks, wow - not an easy or cheap test
If you have it done as a peripheral draw it is easy, not sure how much it costs though. The trick is that you need to have it drawn where there is access to the right equipment. I was thinking about making an appointment with a cardiologist I once had a stress test and echo with as an outpatient since his office is in a hospital complex.
 

Shanti1

Administrator
Messages
3,203
has anyone documented bioclots in ME/CFS patients directly? if so how do they compare with Long Covid?

I was looking into this... I found lots of studies showing how we form clots in reaction to different bacteria and viruses, but I couldn't find any studies showing that bacteria or viruses can actually be found inside these clots, or that they use the clots to spread. So I'm thinking it is theory, but not unplausible.

To put both sides out there, I also found a study that proposes that the clotting reaction to pathogens is used by the body as a defense mechanism to stop their spread: https://onlinelibrary.wiley.com/doi/full/10.1002/rth2.12109

I didn't find any studies showing that pwME have 'bioclots' but perhaps Dr. Aguirre-Chang has directly observed them? I'm still of the mindset that many of us have hypercoagulation and RBC changes triggered by inflammation/stealth infection/oxidative stress.... not sure on the bioclots.
 
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CFS/ME, FM: MEASUREMENT OF VENOUS GASES AND OF LACTATE FOR THE DIAGNOSIS OF HYPOXEMIA AND TISSUE HYPOPERFUSION IN DISEASES PRESENTING CHRONIC FATIGUE AND BRAIN FOG.
For patients with Chronic Fatigue Syndrome, Persistent Symptoms of COVID, Fibromyalgia, Chronic Lyme, Herpesvirus, EBV, Bartonella, Babesia, Enterovirus, HPV, Parvovirus, Anaplasmosis, Gulf War Disease, Alzheimer's and, other Diseases that present Chronic Fatigue and/or Brain Fog.
https://www.researchgate.net/public...ASES_PRESENTING_CHRONIC_FATIGUE_AND_BRAIN_FOG
The procedure for taking a blood sample, to perform the Venous Blood Gases and Lactate Measurement analysis, is similar to the procedure performed for routine blood tests such as hemogram or cholesterol, that is, the sample is generally taken from a vein from one of the patient's arms and in this case it is not necessary for the patient to be fasting.
 

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  • CFS-EM-FM- MEASUREMENT OF VENOUS GASES AND OF LACTATE FOR THE DIAGNOSIS OF TISSUE HYPOXEMIA AN...jpg
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
CFS/ME, FM: MEASUREMENT OF VENOUS GASES AND OF LACTATE FOR THE DIAGNOSIS OF HYPOXEMIA AND TISSUE HYPOPERFUSION IN DISEASES PRESENTING CHRONIC FATIGUE AND BRAIN FOG.
For patients with Chronic Fatigue Syndrome, Persistent Symptoms of COVID, Fibromyalgia, Chronic Lyme, Herpesvirus, EBV, Bartonella, Babesia, Enterovirus, HPV, Parvovirus, Anaplasmosis, Gulf War Disease, Alzheimer's and, other Diseases that present Chronic Fatigue and/or Brain Fog.
https://www.researchgate.net/public...ASES_PRESENTING_CHRONIC_FATIGUE_AND_BRAIN_FOG
The procedure for taking a blood sample, to perform the Venous Blood Gases and Lactate Measurement analysis, is similar to the procedure performed for routine blood tests such as hemogram or cholesterol, that is, the sample is generally taken from a vein from one of the patient's arms and in this case it is not necessary for the patient to be fasting.
My lactate is always below range. None of the major US labs test anything other than carbon dioxide.

Might you be so kind as to answer the questions I posed above, please?
 
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CFC/ME, FM: THERAPEUTIC TESTS TO ASSIST THE DIAGNOSIS OF PERSISTENT CLOTS IN DISEASES PRESENTING CHRONIC FATIGUE AND BRAIN FOG.

For patients with Chronic Fatigue Syndrome, Persistent Symptoms of COVID, Fibromyalgia, Chronic Lyme, Herpesvirus, EBV, Bartonella, Babesia, Enterovirus, Coxsackievirus, HPV, Parvovirus, Anaplasmosis, Gulf War Disease, Alzheimer's and, other Diseases that present Chronic Fatigue and/or Brain Fog.

In this link a "Therapeutic Test" is described that helps to diagnose Persistent Clots.
https://www.researchgate.net/public...ASES_PRESENTING_CHRONIC_FATIGUE_AND_BRAIN_FOG

It is indicated that D-Dimer and/or SvO2 analysis be performed, then you should take 1 Antiplatelet and 1 Fibrinolytic/Anticoagulant for 6 days.
And the response is evaluated on the 7th day.

If the analysis is not possible, you can see the response to the treatment, if there is improvement of 40% or more, it is a Positive result for Persistent Clots.

I have included a Table with the doses for patients weighing between 55 to 95 kilos.
 
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@Aguirre-Chang Thank you for posting sand for your explanations. I have already done extensive testing and treatment and find some similarities to what you describe but I have some questions...
My d-dimer runs a little high. I have a Factor 2 (prothrombin) mutation and have already been treated for persistent infections (chlamydia and mycoplasma pneumonias, Epstein Barr, HHV6, cytomegalovirus and HSV1 as well as toxins. Therefore, does your theory apply? My fibrinogen is always near or over top of range - 390-500.
Ive been taking 1-3g lysine for 5 years, due to low value on tests and the herpes infections. Should I do this test? I've been on Valcyte for a total of over 26 months out of the past 5 years.
I can do a great deal of activity, walking over 10,000 steps a day, on average. However, increased pace or intensity, i.e. aerobic exercise for more than 3 minutes crashes me. I get a drained feeling in firearms and lower legs, dizziness and a need for eyes closed and total rest, but usually able to recover within 20 minutes and return to normal activity, other times, I have post-exertionsl malaise for days. Treadmill metabolic testing has shown very abnormal results - my mitochondria prefer to use glycolysis and only rarely fatty acid oxidation, so it has been hypothesized that I deplete muscle glycogen stores too quickly. I am never out of breath, and heart rate never exceeds 105 even at maximum effort.

I can believe muscles are not getting adequate oxygen, but think there's more going on, wouldn't you agree?
Agree, but this is temporary. Seems to relate to oxidative stress.
I have been greatly helped by Kuvan, a firm of tetrahydrobiopterin (BH4) which repeatably increases my exercise capacity, I believe, due to increased nitric oxide production and decreased peroxynitrite production which damaged membranes. I've also been helped by lipid replenishment which repairs these membranes.
A PET scan has a huge amount of radiation and is virtually impossible for patients without suspected cancer to get. SPRCT also has radiation?? And is difficult to get.

ok, what exactly does the doctor order, at what type of lab? E.g. can I order it at LabCorp or Quest Diagnostics, 2 major US labs or do I need to go to a hospital or reseaarch institution?

I will say that my autonomic neurologist explained that I had hypoparathyroidism in my brain when I fainted on a tilt table test... Does this count? (We think this is caused by adrenergic and muscarinic antibodies, however...)
So, I've been extensively tested and treated for bacterial and viral infections, toxins, autoimmunity, and neck trauma. I'm a lot better, but not cured and d-dimer and fibrinogen still run high, but again, I have Factor 2.

What about NO status, peroxynitrite damage to cell membranes, lipid replenishment, and gut malabsorption due to leaky gut? There are other studies that show these things in ME/CFS patients, hence my curiosity about this.

Thank you very much!😃
Hello, I have just finished, it is that there are several questions:
• If your Dimer is elevated, that indicates that you have persistent clots, it is definitely not normal for one to have elevated D-Dimer. Factor 2 predisposes you to have a coagulopathy.
• If you have herpes for so many years, despite taking Valcyte, it is likely that you have other viruses and bacteria as well. You would have to follow a Schedule with several medications, including fibrinolytics, and if the symptoms persist, you would have to evaluate the convenience of doing a procedure such as HELP Apheresis or BOO, and in addition to giving more anti-viral load medications at the same time.
• Fatigue is a symptom associated with hypoperfusion, cellular hypoxia and increased Lactate.
• That the heart rate does not exceed 105 is rare, it could be that there is an adaptation mechanism, for so many years.
• SPECT does have radiation.
• The Venous Blood Gas, Lactate and Pyruvate tests are not complex tests, a blood sample is taken from the arm, as when doing a cholesterol test. The cost is around US $ 20 each.
• Hypoperfusion implies a reduction in the passage of oxygen, nutrients and hormones to the tissues, this can be the cause of hypoparathyroidism.
• Yes, it is very common for there to be an alteration of the intestinal microbiota, and this generates an increase in D-Lactose.
 
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View attachment 45349
You might find this interesting then Dr Aguirre-Chang .
Not sure if you will be able to see this picture but it is my heart rate track for earlier today, average was 96, minimum around 65, maximum 150 to 160. I did no real exercise, just slow walking short distances and pushing a 60 kg motorbike a little. I don't have anxiety and my usual resting heart rate seems to vary between around 60 to 100, depending on how tired I am.

Since getting this heart rate monitor I have tried to capture my sometimes unusually high heart rates but I found that to begin with, when I exercised such as walking hundreds of meters or doing landscape gardening work, my heart rate averaged a very stable 110 to 120, today is the first time I have seen it go past 140. I have had POTS and OI in the past but it hasn't been a consistent problem lately. Yesterday morning I became very tired after exertion and spent most of the day resting, and this morning I felt like perhaps I had caught a virus or something because just waking up felt 'extreme' as if my body wasn't happy about something.
The tachycardia it presents could be associated with a persistent viral infection that generates micro clots (in Chronic COVID we see it).
It is necessary to see if he presents symptoms associated with hyperfusion, such as numbness or pain in the hands when getting up after resting in bed, or fatigue due to exertion.
Blood tests would need to be done for:
1) Venous Blood Gases.
2) D-dimer.
3) Lactate or Lactic Acid.
 
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My personal Primary Care Physician wrote a whole book on his theories of what going on with Capillaries and Endothelial inflammation .


I wonder if something in this book, would be useful to this entire ME related issue.

Hazing Aging is the name and I think he keeps doing new editions. Dr. Robert Buckingham.

https://www.amazon.com/Hazing-Aging-Capillary-Endothelia-Inflammation/dp/1491766727

I have not had a chance to discuss all this with him yet, but I really need to. (COVID stuck here).
That book looks very interesting.
And yes, I am convinced that maintaining a healthy endothelium is very beneficial.
In the last conversation I had with Dr. Beate Jaeger (pioneer of HELP Apheresis), I told her that for me, intervening cleaning the blood and improving the endothelium seems to me to be the best antiaging therapy today, she answered me that his experience of years was applying it to reduce lipids in blood.
 
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These tests are from the last 4 years. There's no real correlation with my symptoms. However, from 2012-2014, before my illness they were robustly normal.

View attachment 45482View attachment 45483View attachment 45484View attachment 45485View attachment 45486View attachment 45487
I have been talking with Bo Karlicki about the years he has been taking Lysine, he is from the team specialized in Lysine for Herpes.
Some data is required:
His weight.
Age.
You are male.
Your D-dimer results.
 
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CHRONIC COVID (or LONG COVID or PACS) IT IS A VASCULAR DISEASE.

https://www.researchgate.net/public...ISTENT_COVID_or_PACS_IT_IS_A_VASCULAR_DISEASE

Aguirre-Chang G and Trujillo A. Chronic COVID or Long COVID or Persistent COVID it is Vascular...jpg


To identify Hypoperfusion and Hyperlactacidemia, regular tomography or X-rays are not more useful.
Since the tissues are not damaged, or they only present macroscopically not visible lesions.

Routine blood tests are also usually normal or slightly abnormal.

What is required are specific blood tests to identify hypoperfusion, persistent clots, and cellular hypoxia.

We indicate the following 3 analyzes are carried out, which are not complex or high-cost (on average the cost is 20 to 40 US dollars each):

1) MEASUREMENT OF VENOUS BLOOD GASES.
If Venous Oxygen Saturation (SvO2) is low, it is assumed that the supply of oxygen to the tissues is decreased, and it is highly probable that there is Hypoperfusion.

2) D-DIMER.
If it is elevated, it would indicate as a first option that there are persistent clots.
If it is within the normal range, clots cannot be ruled out, since D-Dimer is a product of fibrin degradation, so if there is no breakdown or lysis of clots (as can occur in COVID Chronic) the D-dimer would not be elevated.

3) LACTATE (also known as Lactic Acid).
If it is elevated, it would indicate that there is cellular hypoxia.

Taking a blood sample to perform these 3 tests is similar to the procedure performed for routine blood tests such as hemogram or cholesterol, that is, the sample is generally taken from a vein in one of the patient's arms.
The amount of blood required is not much, and the patient does not need to be fasting.
 
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Different pathogenic microorganisms generate a similar response in the body.

Causes change. The etiological agents, which are intracellular microorganisms, change.

In the case of Chronic COVID, it is the SARS CoV-2 virus.

In the case of CFS / ME they are frequently triggered by viruses.

But it can also be due to bacteria and other intracellular microorganisms, it can also be due to antigens or parts of viruses or bacteria.
 
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Different pathogenic microorganisms generate a similar response in the body.

Causes change. The etiological agents, which are intracellular microorganisms, change.

In the case of Chronic COVID, it is the SARS CoV-2 virus.

In the case of CFS / ME they are frequently triggered by viruses.

But it can also be due to bacteria and other intracellular microorganisms, it can also be due to antigens or parts of viruses or bacteria.
However, there are many other things also going in in ME/CFS, some of which caused the symptoms in the boxes:
  • Immune deficiency or dysregulation (NK cells, T cells, B cells, immunoglobulins, mast cells)
  • Autoimmune antibodies
  • HPA axis and thyroid dysfunction
  • Mold, chemical, and/or heavy metal toxicity
  • Mitochondrial dysfunction
 
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ME/CFS, FM:
MITOCHONDRIAL DYSFUNCTION
IN DISEASES PRESENTING CHRONIC FATIGUE AND BRAIN FOG
IS ASSOCIATED WITH CELLULAR HYPOXIA, HYPOPERFUSION, ENDOTHELIAL DYSFUNCTION AND PERSISTENT CLOTS.
https://www.researchgate.net/public..._ENDOTHELIAL_DYSFUNCTION_AND_PERSISTENT_CLOTS


Analysis of Venous Blood Gases, Lactate and D-Dimer is recommended.

For patients with Chronic Fatigue, Persistent Symptoms of COVID (Long COVID), Fibromyalgia, Chronic Lyme, Herpesvirus, EBV, Bartonela, Babesia, Enterovirus, HPV, Parvovirus, Anaplasmosis, Disease of the Gulf War, Alzheimer's and others.

Cellular Hypoxia causes Mitochondrial Dysfunction.

In a state of normal oxygenation, the cells maintain an aerobic metabolism since the supply of oxygen meets the demand of the cells and tissues.
But in a state of hypoxia, when aerobic metabolism is insufficient to produce Adenosine Triphosphate (ATP), cells must resort to alternative pathways to maintain ATP production, thus activating anaerobic metabolism.

Dysoxia with higher production of Lactate and Pyruvate.

It is considered that when SvO2 drops to less than 50% and persists in these low oxygenation levels, Dysoxia occurs, which is a state of cellular hypoxia in which ATP production is limited by the very low level of oxygen, so "mitochondrial respiration" cannot be maintained, mitochondrial dysfunction occurs, ATP production decreases and existing ATP depletion occurs, this situation of cellular hypoxia causes the body to resort to increasing lactate production (or lactic acid) from pyruvate, so the blood levels of lactate (hyperlactacidemia) and pyruvate rise.
 

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  • Aguirre-Chang G. Trujillo A.CFS-ME-MITOCHONDRIAL DYSFUNCTION IN DISEASES PRESENTING CHRONIC FA...jpg
    Aguirre-Chang G. Trujillo A.CFS-ME-MITOCHONDRIAL DYSFUNCTION IN DISEASES PRESENTING CHRONIC FA...jpg
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Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Dysoxia with higher production of Lactate and Pyruvate.
It is considered that when SvO2 drops to less than 50% and persists in these low oxygenation levels, Dysoxia occurs, which is a state of cellular hypoxia in which ATP production is limited by the very low level of oxygen, so "mitochondrial respiration" cannot be maintained, mitochondrial dysfunction occurs, ATP production decreases and existing ATP depletion occurs, this situation of cellular hypoxia causes the body to resort to increasing lactate production (or lactic acid) from pyruvate, so the blood levels of lactate (hyperlactacidemia) and pyruvate rise.
So, the lactate and pyruvate results I posted are not unique to me. Certainly, others have high lactate, many times, it is due to either thiamine deficiency or gut dysbiosis with lactate producing bacteria in the microbiome.

But, I've seen several others with low lactate and pyruvate, like me. Why would this be?

I did hyperbaric oxygen therapy 2-3 days per week over 2 years. It didn't seem to change any of the coagulation markers or lactate and pyruvate. Why would this be?

Thiamine is helpful with high lactate - see attached, and thiamine is essential to mitochondrial function.
 

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