Update on markers and ...need to explore co-morbidities?

[Sinclair]

Hello,

If anyone might be interested and has the time and energy to give me a feedback, I drafted a summary of my hypothesis, symptoms, protocol and tests performed so far, which is available here (#8).

While preparing this document I realized that beyond the not-that-rare markers for a PWME (immuno-deficiency markers (inverted CD4/CD8 ratio, and absolute NK count well below range), and positive IgG ABs (with no titers) for EBV, CMV, C.Pneumoniae, and VZV)......

I also have some others markers in line with the Dx (very low Creatine Kinase, gliosis spots in two brain MRI, radiculopathies in spine MRI, and had chickenpox in 1993 at 17 y.o.)......

but that I also have some markers suggesting inquiring for co-morbidities or misdiagnosis could be worthwhile: no inflammation shown by C-Reactive Proteine, low creatinine, high homocysteine, high transferrin saturation percentage, low SGOT/SPOT index, low eosinophils leukocytes, very low ESR, but normal low platelets, high LDL colesterol, low insuline, high HbA1c, urine with bacteria, cetones, leukocytes and mucus

I am a partial respondent to a protocol based on suggestions by the www.enterovirusfoundation.org but I am dependant on the protocol and I have the feeling that I am not really tackling the cause of this but rather just the symptoms. When I checked these markers, I though that something else could be worth exploring.

Thanks for the suggestions and any insights.

I take the chance, at this time of the year, for thanking all the members and administrators that make PR a non-ending source of knowledge and health improvement!

Best,

S.

 

[Sherlock]

inverted CD4/CD8 ratio

JonathanEdwards addresses the CD4/CD8 ratio very recently here: http://forums.phoenixrising.me/inde...e-panel-lymphocyte-results.34533/#post-537773

and elsewhere in that same thread.

 

[halcyon]

Good idea summarizing everything in one document like that, I think I'll do the same.

I too developed vertical nail ridges after I got sick. Supplementation with selenium appears to be reversing it so I apparently became selenium deficient, despite being within range on a blood test.

I also have a very low ESR (had, I should say, it hasn't been checked since the beginning of my illness) and I believe this is actually common. I seem to remember someone saying that it's discussed in the Osler's Web book but I haven't come across that part yet.

I also have high LDL but I believe the way this test is calculated is kind of bogus.

 

[Sinclair]

@halcyon thanks for your reply; actually a doc. like this one will be helpful in your consultation with Dr. Chia, are not you seeing him by January?

 

[halcyon]

Yes, I want to send him something like this before my appointment in January. Hopefully then I can spend most of the appointment time discussing treatment options.

 

[Sea]

I also have some markers suggesting inquiring for co-morbidities or misdiagnosis could be worthwhile: no inflammation shown by C-Reactive Proteine, low creatinine, high homocysteine, high transferrin saturation percentage, low SGOT/SPOT index, low eosinophils leukocytes, very low ESR, but normal low platelets, high LDL colesterol, low insuline, high HbA1c, urine with bacteria, cetones, leukocytes and mucus
S.

I haven't looked at your link yet, I will though. I appreciate the sharing of lab results and ideas here to help us all.

Although some with ME/cfs do have a raised CPR it is not an expected finding so I am curious as to why you think a normal CPR is a marker to consider misdiagnosis or another illness. Also I am not sure what you mean by very low ESR, the bottom of normal range is 0. Only a high ESR is an indication of a problem.

 

[halcyon]

Only a high ESR is an indication of a problem.

From what I've read this isn't necessarily true. A very low ESR can be an indication of blood hyperviscosity.

 

[Mij]

Good idea summarizing everything in one document like that, I think I'll do the same.

I too developed vertical nail ridges after I got sick. Supplementation with selenium appears to be reversing it so I apparently became selenium deficient, despite being within range on a blood test.

I also have a very low ESR (had, I should say, it hasn't been checked since the beginning of my illness) and I believe this is actually common. I seem to remember someone saying that it's discussed in the Osler's Web book but I haven't come across that part yet.

I also have high LDL but I believe the way this test is calculated is kind of bogus.

Could you tell me how much selenium you took to reverse this? I also have this problem after becoming ill. First I thought it was low iron and/or magnesium, but they are not disappearing after supplementation.

 

[halcyon]

Could you tell me how much selenium you took to reverse this? I also have this problem after becoming ill. First I thought it was low iron and/or magnesium, but they are not disappearing after supplementation.

I'm taking 200mcg of selenomethionine a day. They're not back to normal yet but they're slowly getting better.

 

[taniaaust1]

high homocysteine

Generally that is usually a sign that the person has MTHFR mutation, mine was in the higher range of normal and my specialist immediately told me he thought I had MTHFR mutation due to it (he was correct) but many due to it have it out of the normal range.

I strongly suggest you get tested for that as that is something which can be treated some with things and can help a bit. My MTHFR mutation unsupplemented properly does make my ME symptoms worst.

very low ESR,

That one is a quite common ME finding.

 

[taniaaust1]

I was just looking at your old post. You really need to have a tilt table test done as it sounds like you have dysautonomia, probably POTS from what you've said.

 

[Sinclair]

so I am curious as to why you think a normal CPR is a marker to consider misdiagnosis or another illness.

I am not sure but wouldn't you expect an indication of chronic inflammation, so what can you think when in spite of symptoms, no inflammation marker shows up?

 

[Sinclair]

From what I've read this isn't necessarily true. A very low ESR can be an indication of blood hyperviscosity.

I took this from another thread by the late RVK:

http://forums.phoenixrising.me/index.php?threads/esr-always-low-in-me.19139/
The sed rate can be either high or low in ME/CFS. If a person's blood is hypercoagulated, and that dominates, the sed rate will be low, below 4 or 5 mm per hour. If Inflammation dominates, it will be high, above its reference range.
Hi, Ocean.

The conventional medical establishment does not attach significance to a low sed rate, only to a high one. David Berg introduced the concept of Immune System Activation of Coagulation, or ISAC. He found that sed rates below 4 or 5 mm per hour were suggestive of ISAC, and recommended specialized testing for those cases. This testing is still available from the Esoterix Lab in Phoenix, which bought out his Hemex Lab some years ago. Esoterix is now part of LabCorp.

The concept is that when there is an infection, even a normal person's coagulation system deposits some fibrin in the capillaries to help to prevent spread of the infection. However, in a person with ISAC, this response is exaggerated because of a genetic variation in one or more of the proteins in the coagulation cascade.

David recommended that this be treated with low dose heparin or with one of the natural proteolytic substances, such as nattokinase or lumbrokinase. He also recommended that an antiviral or a transfer factor be used with this, because otherwise the virus would multiply and the deposition of fibrin would become even more severe.

The reason for treating to remove the fibrin, according to David, is that it hinders the diffusion of oxygen from the capillaries into the cells.

Best regards,

Rich
Blood Coagul Fibrinolysis. 1999 Oct;10(7):435-8.
Chronic fatigue syndrome and/or fibromyalgia as a variation of antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis.

Berg D, Berg LH, Couvaras J, Harrison H.
Source

HEMEX Laboratories, Inc., Phoenix, Arizona 85021, USA.
Abstract

Chronic Fatigue and/or Fibromyalgia have long been diseases without definition. An explanatory model of coagulation activation has been demonstrated through use of the ISAC panel of five tests, including, Fibrinogen, Prothrombin Fragment 1+2, Thrombin/ AntiThrombin Complexes, Soluble Fibrin Monomer, and Platelet Activation by flow cytometry. These tests show low level coagulation activation from immunoglobulins (Igs) as demonstrated by Anti-B2GPI antibodies, which allows classification of these diseases as a type of antiphospholipid antibody syndrome. The ISAC panel allows testing for diagnosis as well as monitoring for anticoagulation protocols in these patients.
PMID: 10695770

 

[Sinclair]

Could you tell me how much selenium you took to reverse this? I also have this problem after becoming ill. First I thought it was low iron and/or magnesium, but they are not disappearing after supplementation.

@halcyon how did you make the link nail ridges - Selenium deficiency? I have been supplementing with 300 mcg seleniomethionithe daily for 6 months with noticeable effects in other symptoms (e.g. Brain fog, headaches) but nothing noticeable regarding nail ridges.

 

[Sinclair]

@taniaaust1 many thanks for taking the time for reviewing my records!!!

As to SNPs (re: MTHFR) I started methylB12 sublingual yesterday and plan to add folinic acid in a few days, as a first approach to improving methylation, as suggested by my GP. Anyway, I plan to take the 23andME and the Nutreval tests soon, in order to have a clearer view of what my SNPs are.

As to dysautonomia/POTS, not really sure how to proceed and what priority it deserves.
I was thinking in testing it by 3 subsequent BP + HR measures (as suggested by the international primer for medical practitioners), and I have tried to increase my sea salt and water intake. I understand that IV saline might help too, but have not tried it yet. Regarding drugs for POTS my concern is how they might be worsening leaky gut.
On the other hand I understand that not all the ME/CFS gurus give POTS the priority it deserves in relieving symptoms...(indeed I am not aware that Dr. Chia, for instance, tackles POTS, but Dr. Klimas, on the contrary, seems to give it a first priority).
So, in this field I am rather lost, thus suggestions are very welcome.

Many thanks again for your time!

S.

 

[halcyon]

@halcyon how did you make the link nail ridges - Selenium deficiency? I have been supplementing with 300 mcg seleniomethionithe daily for 6 months with noticeable effects in other symptoms (e.g. Brain fog, headaches) but nothing noticeable regarding nail ridges.

Someone on here mentioned that selenium made their nails stronger. Then I learned how important selenium was for immune health and assumed it must be getting used up fighting this enterovirus infection.

 

[Sea]

I am not sure but wouldn't you expect an indication of chronic inflammation, so what can you think when in spite of symptoms, no inflammation marker shows up?

You can't call a normal result a marker. You may have symptoms that would normally indicate inflammation but it is obviously not of the type that the CRP test measures, as is true for most with ME/CFS.

There are some with a diagnosis of ME/CFS who do have a chronically elevated CRP but they seem to be in the minority. Sadly I hear that because of their diagnosis most of them have this marker ignored by their doctor. Whether that is one expression of ME/CFS, a subtype, a comorbid illness or a misdiagnosis we do not yet know.

So, if you had an elevated CRP I would suggest looking for some answers as to why, but with a normal CRP it really doesn't give you any clues and is very usual for ME/CFS patients so it doesn't indicate a comorbidity or misdiagnosis at all.

 

[jsfm]

You can't call a normal result a marker. You may have symptoms that would normally indicate inflammation but it is obviously not of the type that the CRP test measures, as is true for most with ME/CFS.

There are some with a diagnosis of ME/CFS who do have a chronically elevated CRP but they seem to be in the minority. Sadly I hear that because of their diagnosis most of them have this marker ignored by their doctor. Whether that is one expression of ME/CFS, a subtype, a comorbid illness or a misdiagnosis we do not yet know.

So, if you had an elevated CRP I would suggest looking for some answers as to why, but with a normal CRP it really doesn't give you any clues and is very usual for ME/CFS patients so it doesn't indicate a comorbidity or misdiagnosis at all.

I have a chronically elevated CRP and the doctor just ignores it. Has anyone had a doctor actually look for a secondary diagnosis for this elevated CRP?