Immune System Supplements and Questions

[LaurelB]

Sorry to start a new thread on questions I"m sure have already been raised and answered elsewhere on here. I'm too sick to do a search and skim through old posts right now, so thanks for your patience with me.

I have a lot of questions in regards to immune supplements and immune system abnormalities in ME/CFS. I know some parts of the immune system in this illness are up-regulated, while other parts are down-regulated. I don't want to take a supplement that ends up exacerbating these specific issues, but I'm too sick to do much research on it all right now.

I wonder, is there a natural immune system supplement that increases NK cells and activity, without also increasing cytokine levels?

Also, I know that the CD4/CD8 ratio is often abnormal in ME/CFS, but I'm not sure in what way? Is CD4 too low and CD8 too high, or the other way around? I found a product (Epicor) that supposedly restores this balance, but I want to make sure it does so in the right direction. Has anyone tried this supplement? What about Moducare (another natural immune system modulator)? Anyone tried it?

I also wondered, if there a website that explains all the immune abnormalities found in ME/CFS and where one can get tested? For example, how/where does one get tested for TNF-a, cd4/cd8, cytokine levels, nk cells, b cells, etc. Is there a lab currently running all these tests? What is the overall expense?

Unrelated to the immune system, does anyone know of an adrenal supplement that is not a glandular that is effective? I am wary of taking anything that has raw cow organs in it. I have done so before, but I'd prefer to try something else if possible.

I also have questions about GcMAF, LDN and Rituximab and how all these work differently yet all can be effective, whether GcMAF and LDN can be taken together, etc... but I've run out of steam already. So I'll leave my questions at the above for now.

I probably won't be able to reply to any responses, so thanks in advance for any assistance on any of these q's!

 

[xrunner]

I have a lot of questions in regards to immune supplements and immune system abnormalities in ME/CFS. I know some parts of the immune system in this illness are up-regulated, while other parts are down-regulated. I don't want to take a supplement that ends up exacerbating these specific issues, but I'm too sick to do much research.
I'm not aware of specific abnormalities having been reliably and definitely confirmed. One study throws up some, other studies other abnormalities. This may have to do with the poor diagnostic criteria used which include people possibly having different underlying illnesses with fatigue the common symptom.

I wonder, is there a natural immune system supplement that increases NK cells and activity, without also increasing cytokine levels?
My experience has been limited to MGN-3, Reishi (good for other things), shiitake, transfer factor. Results were quite disappointing. Your best bet in terms of value for money may be Cat's Claw, there are lots of studies on this herb.

Also, I know that the CD4/CD8 ratio is often irregular in ME/CFS, but I'm not sure in what way? Is CD4 too low and CD8 too high, or the other way around? I found a product (Epicor) that supposedly restores this balance, but I want to make sure it does so in the right direction. Has anyone tried this supplement? What about Moducare (another natural immune system modulator)?
My CD4/CD8 was 0.8 against a normal range of 1-2.5 (I think). I was told this is often seen in CFS, i.e. a low percentage of T-Helper cells. I have never heard of either Epicor or Moducare. I tried Proboost which is supposed to normalise CD4 but again with no positive results. You'd have to check whether there's any real studies behind the claims of the sellers. Two herbs that have studies proving they can correct such abnormalities are Cat's Claw (again) and Astragalus (whole herb)

I also wondered, if there a website that explains all the immune abnormalities found in ME/CFS and where one can get tested?
I don't know this one (It's a waste of time and money, in my opinion)

For example, how/where does one get tested for TNF-a, cd4/cd8, cytokine levels, nk cells, b cells, etc. Is there a lab currently running all these tests? What is the overall expense?
CD4/CD8 and Lymphocytes subsets should be available pretty much at avery major lab.
For NK cells activity, I tested at a lab in Germany but there should be some in the US also.
Cytokines levels, I think Redlab (Dr KdMeirleir) does some of these.


Unrelated to the immune system, does anyone know of an adrenal supplement that is not a glandular that is effective? I am wary of taking anything that has raw cow organs in it. I have done so before, but I'd prefer to try something else if possible.
I don't think it's unrelated to the immune system. Some cytokines have a direct effect on the functioning of the HPA axis. Anyhow, Ashwagandha worked for me.

I also have questions about GcMAF, LDN and Rituximab and how all these work differently yet all can be effective, whether GcMAF and LDN can be taken together, etc...
but I've run out of steam already. So I'll leave my questions at that for now, I guess. I used to be able to do all this research on my own but my health is just too poor right now.
I probably won't be able to reply to any responses, so thanks in advance for any assistance!
You're wellcome, we're all here to share information, experiences etc and help each other if possible, all the best.

 

[Tristen]

Hi Laurel, I'm sorry to hear your more ill currently.

My immune system is extremely sensitive to many things in all categories. Most are out of the question for me, and because of this I wasn't going to reply to your post. But I see you asking about Moducare. It's definitely the best Immune modulator I've ever taken. It was many years ago and you know how we change over time, but at that time it not only gave obvious relief, but I was able tolerate it just fine. No idea how it would affect me now because I've been off on many other tangents since then. Just wanted to say I think it's worth a try. If you find it helps and the price is prohibitive, there are cheaper brands of Plant Sterols. But I would start with Moducare.

I thought those labs your asking about were routine with me/cfs docs. I've had them done several times through VIP, and maybe some of them via Labcorp. They are all covered 80% by Medi-Care. Rest is out of pocket but hasn't amounted to much.



Hope you feel better soon,

Tristen

 

[Tristen]

I've also had cytokine panels done via Dr Klimas's lab in Miami. The last one was called the "Cytokine Multiplex-18 Report". It measures 18 different cytokines.

http://medicine.med.miami.edu/x642.xml

 

[*GG*]

Thanks for the link but I don't see any reference to "Cytokine Mulitplex-18 Report". Perhaps I am just missing it, will try again tomorrow.

GG

 

[Tristen]

Thanks for the link but I don't see any reference to "Cytokine Mulitplex-18 Report". Perhaps I am just missing it, will try again tomorrow.

GG

Sorry, I didn't realize it gives only an overview rather than a breakdown of specific tests. I would expect to find the "Cytokine Multiplex-18" in a drop-down under the "Determination of a large number of cytokines and soluble immune mediators in serum or other body fluids", category. But it's not there.

I guess the site is good for contact info only. Maybe a doc can get access to the test menu another way. Surely by calling.

Anyhow, that test includes:
Proinflamatory.......................TNFa, TNFb, IL1a, IL1b, IL6, TNF R1
Th1/IL8...............................TFNy, IL12, IL2, IL15, IL8, TNF R11
Th2/TH17/Anti-inflammatory....IL4, IL5, IL17, IL23, IL10, IL13

 

[LaurelB]

Thanks, everyone. You've been very helpful. I will look into all the products mentioned.

Tristan -- I assume you don't have to be a patient to have those tests done at the Klimas lab? Did your insurance cover it? Thanks again in advance.

 

[Tristen]

Thanks, everyone. You've been very helpful. I will look into all the products mentioned.

Tristan -- I assume you don't have to be a patient to have those tests done at the Klimas lab? Did your insurance cover it? Thanks again in advance.

I'm not a patient there. And yes, they did take my m-care for payment. My doc consults with Dr Klimas on research issues, but I believe the lab also functions as a reference lab open to the public. Anyhow their web page sure appears they do, listing all the tests, shipping, and billing information for reference lab work. I see nothing there about being exclusive for research, particular docs, or studies. Line was busy this morning, but the number is lower on the page, and their usually very helpful.

I don't know about VIP as an option after all these latest changes, but most of my complex immune lab work was done through them. They also billed my insurance.

 

[Lotus97]

I think I might be having problems with some of my immune system supplements. I'm really glad I found this thread. Someone mentioned Cat's Claw. I'm not sure if this is just for Lyme, but it can cause a Herx in some people which I suppose is a good thing or a bad thing. I read somewhere that Epicor is an immune system modulator and not an immune system booster, but please don't quote me on that because I don't remember where I read it. If anyone does know if Epicor can cause problems I'd like to know because I have 2 unopened bottles (BOGO) in my room. Is increasing cytokines the main thing that causes problems or are there other things to look out for too? And I thought there are different kinds of cytokines. Are there only certain ones that are bad? For the past 2 years I took a lot of different supplements and rarely had a problem, but recently I've been having a lot of bad luck and not just with the immune supplements. My monocytes and eosinophils are high. I'm not exactly sure what that means.