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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.Thanks, wow - not an easy or cheap test
has anyone documented bioclots in ME/CFS patients directly? if so how do they compare with Long Covid?
My lactate is always below range. None of the major US labs test anything other than carbon dioxide.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.
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.
Hello, I have just finished, it is that there are several questions:@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!😃
The tachycardia it presents could be associated with a persistent viral infection that generates micro clots (in Chronic COVID we see it).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.
That book looks very interesting.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.
I have not had a chance to discuss all this with him yet, but I really need to. (COVID stuck here).
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?
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.What have been your Lactate values?
And an analysis of Pyruvate, also known as Pyruvic Acid, has been carried out.
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.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.
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However, there are many other things also going in in ME/CFS, some of which caused the symptoms in the boxes:
Different pathogenic microorganisms generate a similar response in the body.
- CHRONIC FATIGUE SYNDROME (CFS) AND FIBROMYALGIA ARE VASCULAR DISEASE.
View attachment 45507
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.
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.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.