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

[Marylib]

@HealingFalcon - thanks for clarifying. I hope you can receive more of the treatments if you want, and I hope everyone will have access to anything that helps!

 

[Martin aka paused||M.E.]

Hi @Martin aka paused||M.E.
You had mentioned before that you have high cholesterol, I am wondering how high and if the triglycerides were also very high. Lipid droplets on a blood smear have been documented in people with extremely elevated lipids. Were you fasting when the blood smear was taken?



People who have moderately high cholesterol wouldn't typically exhibit lipid droplets on a blood smear as fats are carried as part of a lipoprotein, which allows them to be water-soluble. Lipoproteins are very small and visible only with an electron scanning microscope. It is only when the fats in the blood are excessively high that you would expect to see them as free-floating accumulations. It is not any stretch for me to think that lipid droplets in the blood and such a high LpPLA2 are contributors to endothelial dysfunction and poor oxygen delivery. If you do have very high cholesterol/triglycerides, has it always been that way or just since ME/CFS diagnosis? Does it run in the family?

As far as lowering lipids having a consequence on your ability to utilize fats for energy, my though is that lowering them is not a problem. The body/cells are designed to uptake fats in the form of lipoproteins, not accumulated lipid droplets and should be able to do so with normal lipoprotien levels in the blood.

Of course we don't have visability to the specifics of your metabolism, but lets say you do have a problem with glycolysis or maybe you convert all your pyruvate to lactic acid because of an inhibition of the pyruvate dehydrogenase enzyme, or because your tissues aren't getting enough oxygen to utilize oxydative phosphorylation. Fatty acids and ketones can bypass the pyruvate dehydrogenase enzyme and enter the Krebs Cycle as Acetyl CoA, going on to produce the higher ATP count.... but only if oxygen is available.

My guess is that your cells will not suffer from a lack of fuel if you lower your lipids, but that the inability to produce energy is due to lack of oxygen delivery to tissues, or something else directly inhibiting mitochondrial function such as a pathogen, toxin or the mitochondria going into a "cell danger" response" from a precieved threat, rather than the inability of your cells to efficiently sequester lipoprotiens from your blood.

High lipids can also contribute to insulin resistance which would lead to high blood sugar, which then, unfortunately, contributes to higher triglycerides. It might be worth checking your fasting insulin at some point.

I hope all of that helps

My Cholesterol is normal but my LDL (photometry) is high (148 mg/dl). What is a bit confusing is that my lipoproteins are low (<2mg/dl). Tryglicerides not measured). I wasn’t fasting. Just took blood in the morning last meal was evening. No special diet.

I remember that i once had high cholesterol as a child. I’m not sure if it was high again before I got severe. But as a child I did not have ME.
Then ferretin is very low (9.6 mg/dl) and iron too. I don't know if that plays a role. But I don't think so because when I took iron pills I did not improve anything. Maybe it's a consequence of chronic inflammation?

ATP is a bit low. Intracellular potassium and magnesium are very low (could be due to low leukocytes?).

All vitamin D values are low, especially VDBP.

FGF23 very high while alpha Klotho low. Lab says that could lead to low production of 1.25- (OH)2 Vit D from 25 (OH) Vit D. And as a consequence of low alpha klotho cells wouldn't be protected from ox stress.

Methionine and Arginine are low.

EBV is mysterious. LTT slightly elevated but lab says latent. But I have a t cell exhsustion so I don't know if this is accurate.
EBVM 25.5 (ref. <0.12). IgG: EBNA: 9.6 VCA-p18: 2.2 VCA-p23: 1.5 EA-p54 1.6
So could be reactivation?

MBL below detection limit (but I have found a SNP so I think it's genetic).

IFN-g always very low (lab says decompensation due to chronic inflammation and not TH-2 shift).

NK-cells very low, low NK-cell activity. Very low b-cells. T-cell exhaustion. Low thymus function (CD 31+). Low relative CD 8 (cytotoxic CD 28+).

And many more (high IL-1b, IL-8, MCP-1, RANTES, MRP-8/14, very (!) high MIF, procalcotonin….) VEGF below detection limit.

Signs of CMV reactivation in LTT and ITT (IL2 and IFN-g very high),
HHV-6 IgG 1:640 IGA-IFT 1:20. Could also be reactivation.

Coxsackie B4: 1:640! Should be reactivation but qPCR negative so maybe only in epithelial cells of mucosa and not detectable in peripheral blood?

SOD very high, Perox-status high.

Pregnenolone low.

Interferons:
MxA very high.
IFN-b mRNA very high
RIG-1 mRNA very high
—> viral reactivation

Could go on for years. So as you see me body is a mess.

 

[BrightCandle]

Could go on for years. So as you see me body is a mess.

As say we all.

Someone is looking for once, I hope they are onto something.

 

[Martin aka paused||M.E.]

As say we all.

This shit ruins your body completely

 

[Marjoleine]

No. I did it in one of the other HELP apheresis clinics in Berlin which is the reason my blood wasn't studied before...and for now there is no possibility to get it examined.

I have more appointments sheduled but had to cancle each until now. We will see...

I sincerely hope you will feel well enough soon to have the additional Treatments.

 

[Crux]

FGF23 very high while alpha Klotho low. Lab says that could lead to low production of 1.25- (OH)2 Vit D from 25 (OH) Vit D. And as a consequence of low alpha klotho cells wouldn't be protected from ox stress.

Hi, I hope this isn't out of line , but after reading a bit about calcium , phosphorus, parathyroid function, and kidney function, I came across these hormones. This science is mind blowingly complicated.
Perhaps an endocrinologist is interpreting these results I hope.

This paper is older but explains the function of FGF23 well ;
https://www.sciencedirect.com/science/article/pii/S8756328216302563

https://www.pnas.org/content/115/16/E3749

Since these results may be an indication of parathyroid and kidney dysfunction , I risk being rude to warn you.

 

[Martin aka paused||M.E.]

Hi, I hope this isn't out of line , but after reading a bit about calcium , phosphorus, parathyroid function, and kidney function, I came across these hormones. This science is mind blowingly complicated.
Perhaps an endocrinologist is interpreting these results I hope.

This paper is older but explains the function of FGF23 well ;
https://www.sciencedirect.com/science/article/pii/S8756328216302563

https://www.pnas.org/content/115/16/E3749

Since these results may be an indication of parathyroid and kidney dysfunction , I risk being rude to warn you.

Thank you! I think I have to make contact with an endocrinologist

 

[Crux]

Thank you! I think I have to make contact with an endocrinologist

Relieved here.

 

[Strawberry]

How may I ask did you get that diagnosis?

A doctor looking at my CBC ? I don’t remember what made him say it though.

 

[Shanti1]

@Martin aka paused||M.E. Your lab tests are definitely telling a story of immune dysregulation, inflammation, viral reactivation, endothelial dysfunction, and poor tissue oxygenation. I hope you can find a doctor who can synthesize all of this into efficacious treatments. I made a few comments below.

My Cholesterol is normal but my LDL (photometry) is high (148 mg/dl). What is a bit confusing is that my lipoproteins are low (<2mg/dl). Tryglicerides not measured). I wasn’t fasting. Just took blood in the morning last meal was evening. No special diet. I remember that i once had high cholesterol as a child. I’m not sure if it was high again before I got severe. But as a child I did not have ME.

The fats seen in blood smears in the papers I saw occurred in people with extremely high levels of triglycerides. Although I wouldn't expect extremely high triglycerides with a mildly elevated LDL like yours, it can happen, so it may be worth checking your triglycerides (I'm sure you have had them tested at some point, it should be part of a standard lipid profile). Eating a high-fat meal before the smear could also elevate triglycerides.
I'm not familiar with a test for total lipoproteins, I'm more familiar with testing for certain types (VLDL, LDL, HDL, Lipoprotein (a), and Apo B). If your total lipoproteins were <2mg/dL, that does seem very odd indeed.

Then ferritin is very low (9.6 mg/dl) and iron too. I don't know if that plays a role. But I don't think so because when I took iron pills I did not improve anything. Maybe it's a consequence of chronic inflammation?

In chronic and acute inflammation, ferritin will elevate. It is both a marker of our iron stores and a marker of inflammation. While high ferritin can indicate inflammation or iron overload, low ferritin pretty much means low iron, which can contribute to fatigue. Iron defficiency will override the ability of inflammation to elevate ferritin.

Here is a recent thread with comments on how to increase iron when it doesn't improve with oral supplementation: https://forums.phoenixrising.me/thr...ency-without-anemia-an-internist-found.86183/

ATP is a bit low. Intracellular potassium and magnesium are very low (could be due to low leukocytes?). Methionine and Arginine are low.

Maybe there are some issues with nutrient absorption, esp considering the low iron?

[QUOTE} FGF23 very high while alpha Klotho low. Lab says that could lead to low production of 1.25- (OH)2 Vit D from 25 (OH) Vit D. And as a consequence of low alpha klotho cells wouldn't be protected from ox stress.[/QUOTE]
High Fibroblast Growth Factor 23 (FGF23), as you noted, suppresses vitamin D production. It also lowers phosphate concentration in the plasma (might be good to check your phosphate and calcium levels). It is often elevated in chronic kidney disease as a countermeasure to the resulting high phosphate. I saw someone already commented to check kidney function. Since a-klotho is a protein that activates FGF23, I wonder if it gets down-regulated when FGF23 is so high. Alpha-klotho is also important for proper endothelial function and nitric oxide production.

EBV is mysterious. LTT slightly elevated but lab says latent. But I have a t cell exhsustion so I don't know if this is accurate.
EBVM 25.5 (ref. <0.12). IgG: EBNA: 9.6 VCA-p18: 2.2 VCA-p23: 1.5 EA-p54 1.6
So could be reactivation?

I'm not sure about the EBV. I think the LTT test looks at virally produced antigens. I'm not sure what EBVM is (is it IgM?) and I'm not familiar with the ranges for the others as they are different than what is typically done here in the US. If you are inclined to post those results, I'm sure I and others would comment.

And many more (high IL-1b, IL-8, MCP-1, RANTES, MRP-8/14, very (!) high MIF, procalcotonin….) VEGF below detection limit.

Procalcitonin is elevated in bacterial infections: https://www.testing.com/tests/procalcitonin/, thats how most docs would read an elevation, but it may not be true for your case. It is also dependent on the degree of elevation.
You would think our bodies would want to produce VEGF but some studies document it as low in ME/CFS. Undetectable seems like another indication that for some reason your body is resisting oxygen delivery.

Coxsackie B4: 1:640! Should be reactivation but qPCR negative so maybe only in epithelial cells of mucosa and not detectable in peripheral blood?

Yeah, I think the viruses are too localized to the tissues to be picked up in blood PCR. Seems it would be more likely to be found in the stool I'm not sure if any lab runs PCR test for coxsackie B4 in stool.

You have so much going on, it is no wonder you feel so unwell. I'm sorry your body is doing all of these strange things. I'm always hoping for the best for you.

 

[GlassCannonLife]

@Martin aka paused||M.E. have you tried magnesium injections (or in IV)? I saw Dr Myhill recommending them when I was first getting ill and tried some - they brought me out of a crash nicely but then I got worse anyway. Might be worth a shot, I think they can help increase cellular stores as serum will be maintained by the body in preference.

Also how do you know you have T cell exhaustion? I heard of this but never saw any specific tests.

 

[Akasha]

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

@Martin aka paused||M.E. In the minute 23:00 (about the things that could cause platelet hyperactivation) she says: "LPS from the walls of certain bacteria". Has this something to do with your case?

By the way, thanks for the link @SWAlexander

 

[Sizzle]

I would like to find out what's the risk of taking anticoagulants, aspirine (3x300mg daily) and natokinase (3 capsules a day) for 6 days.
Especially the risk of bleeding. For stomach protection we already use omeprazol

GP isn't any help for us

 

[Marylib]

This may be a stupid question but if you use the same technology as the images on twitter with the micro-clots, do the lipid deposits look the same?

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. have you tried magnesium injections (or in IV)? I saw Dr Myhill recommending them when I was first getting ill and tried some - they brought me out of a crash nicely but then I got worse anyway. Might be worth a shot, I think they can help increase cellular stores as serum will be maintained by the body in preference.

Also how do you know you have T cell exhaustion? I heard of this but never saw any specific tests.

Yes 1-2g IV. Helps a lot!

I did an LTT for t-cell activation

 

[Martin aka paused||M.E.]

I hope you can find a doctor who can synthesize all of this into efficacious treatments.

I won't. It's too complicated.

In chronic and acute inflammation, ferritin will elevate.

Look at the inflammatory markers below.

Maybe there are some issues with nutrient absorption, esp considering the low iron?

I don't think so. I think it hypoxia. But if you're right it might have sth to do with the lipids in the plasma. Maybe I use fats as fuel. Glucose is high in serum while markers for diabetes are negative. I think it hints to a failure in glycosis.

extremely high triglycerides

They are normal (114 mg/dl)

calcium levels

They are normal.

Alpha-klotho is also important for proper endothelial function and nitric oxide production.

Interesting!!!

Procalcitonin is elevated in bacterial infections:

Yes, right. But it’s not that easy. If it’s highly elevated it is a sign of bacterial infections. But it is only a bit elevated which hints to viral infections.

Undetectable seems like another indication that for some reason your body is resisting oxygen delivery.

Yep

 

[Martin aka paused||M.E.]

Jaeger called me today. I have severe epithelial damages and a severe form of EBV reactivation with a high viral load. Interesting that Red Labs could not detect viral DNA, but it showed many strange things.

And yes, I have a high amount of fat droplets. She thinks the infection is causing all this. What I immediately thought is that enteroviruses can cause all this (titer 1:640).

My LDL-Cholesterol is high. My potassium very low.

She thinks what would help me most is remove the lipids and fight the infection. But it could need apheresis for up to one year (she doesn’t want to earn money with it; she contacted another clinic which isn’t that far for me. Furthermore she will contact a lawyer because we will have to fight for my insurance to pay the costs.

Two final notes. Greetings to me from William Weir (was surprised he kept me in mind) and my interview will be aired on tv soon. This then potentially means a run by ME patients on apheresis

 

[bensmith]

Wow very interesting, congrats mate. I hope this spells out some good things for you, you deserve it.

 

[EtherSpin]

Jaeger called me today. I have severe epithelial damages and a severe form of EBV reactivation with a high viral load. Interesting that Red Labs could not detect viral DNA, but it showed many strange things......
And yes, I have a high amount of fat droplets. She thinks the infection is causing all this. What I immediately thought is that enteroviruses can cause all this (titer 1:640).
.........She thinks what would help me most is remove the lipids and fight the infection. But it could need apheresis for up to one year (she doesn’t want to earn money with it; she contacted another clinic which isn’t that far for me. Furthermore she will contact a lawyer because we will have to fight for my insurance to pay the costs.

Wow!
this is equal parts fascinating and exciting - obviously I don't know you but just seeing your recent posts I am so glad you have the eye of the Doc really finding some significant metrics and speculating both about the mechanisms at play AND what to do about it - all the best and thanks so much for your reporting in and telling us this excellent stuff

 

[Marjoleine]

Wow very interesting, congrats mate. I hope this spells out some good things for you, you deserve it.

Hear, hear, you indeed do, Martin! Thanks for updating us and lighting our spirits as you do.