@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 and H.E.L.P treatment
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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.
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.
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As say we all.
Someone is looking for once, I hope they are onto something.
Someone is looking for once, I hope they are onto something.
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This shit ruins your body completely
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I sincerely hope you will feel well enough soon to have the additional Treatments.
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.
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.
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Thank you! I think I have to make contact with an endocrinologist
A doctor looking at my CBC ? I don’t remember what made him say it though.
@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.
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.
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/
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.
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.
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.
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.
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.
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/
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.
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.
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.
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.
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@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.
Also how do you know you have T cell exhaustion? I heard of this but never saw any specific tests.
@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
By the way, thanks for the link @SWAlexander
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Yes 1-2g IV. Helps a lot!
I did an LTT for t-cell activation
I did an LTT for t-cell activation
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I won't. It's too complicated.
Look at the inflammatory markers below.
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.
They are normal (114 mg/dl)
They are normal.
Interesting!!!
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.
Yep 👍
Look at the inflammatory markers below.
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.
They are normal (114 mg/dl)
They are normal.
Interesting!!!
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.
Yep 👍
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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
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
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
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
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Hear, hear, you indeed do, Martin! Thanks for updating us and lighting our spirits as you do.