Normal NK Function

[Ema]

You understand this a lot better than I do. The reason I asked is because I thought maybe your CD57 would be low before treatment, but normal after treatment since the Lyme bacteria is supposed to lower CD57. Do you think the information is wrong about people with Lyme having low CD57? I'm confused by those conflicting studies I posted earlier. I decided to start the Buhner protocol and part of the reason he recommends cat's claw is because it's supposed to raise CD57.

I really don't know, Lotus97.

I read a little about it when my results came back and concluded that it was probably not a useful marker for everyone (which unfortunately makes it not a reliable marker for anyone). That seems to follow along with my LLMD's thinking and that of other doctors that I have read. Some people can have good NK cells and be terribly ill and others can feel pretty OK and have terrible NK cells. It doesn't seem to predict illness severity for sure.

But that said, I think if your level is low, it doesn't hurt to try to do things to raise it. I've heard other people say good things about cat's claw for Lyme as well.

Ema

 

[LiveAgain]

This is so odd to me. Researchers keep saying NK function is low in ME/CFS, so I assumed asking this question on a popular ME/CFS site would garner lots of responses from patients who were at least tested for it. Who are these Doctors talking about then?

 

[Lotus97]

I really don't know, Lotus97.

I read a little about it when my results came back and concluded that it was probably not a useful marker for everyone (which unfortunately makes it not a reliable marker for anyone). That seems to follow along with my LLMD's thinking and that of other doctors that I have read. Some people can have good NK cells and be terribly ill and others can feel pretty OK and have terrible NK cells. It doesn't seem to predict illness severity for sure.

But that said, I think if your level is low, it doesn't hurt to try to do things to raise it. I've heard other people say good things about cat's claw for Lyme as well.

Ema

I hate learning something and then find out later it might not be true or at least not as true as I thought. I think cat's claw also affects CD4+ and CD8+ (although it might have been another herb in the protocol). And I'm almost positive it's antispirochetal. And who knows? Maybe my CD57 is low too.

 

[Lotus97]

This is so odd to me. Researchers keep saying NK function is low in ME/CFS, so I assumed asking this question on a popular ME/CFS site would garner lots of responses from patients who were at least tested for it. Who are these Doctors talking about then?

I don't know if you had a chance to read that quote from Rich I posted (about how glutathione depletion affects NK cells and cytoxic cells) or checked out that link to the thread he created, but he also mentions these two studies in that thread:

Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
http://www.translational-medicine.com/content/pdf/1479-5876-10-88.pdf

Immunological abnormalities as potential biomarkers in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3120691/pdf/1479-5876-9-81.pdf

 

[Tristen]

This is so odd to me. Researchers keep saying NK function is low in ME/CFS, so I assumed asking this question on a popular ME/CFS site would garner lots of responses from patients who were at least tested for it. Who are these Doctors talking about then?

Well, I'm one of them their talking about. My doc (Peterson) apparently see's a lot of low NK function in his ":classic me/cfs" patients. I couldn't comment on the percentages he see's or what it means as far as subtypes. I believe Heapsreal was part of a NK study they did down under for this very purpose.

Of course we need to find a biomarker, but at this time, I think clinical presentation (symptoms) is by far the best we have for diagnosis. If a person fits the CCC, yet has normal NK function, well um,...........

 

[heapsreal]

nk function test is still a research test only so only docs in the know would have access to it.

I think its true that nk function doesnt predict severity but a poor nk function all the same seems to be the best biomarker we have.

Im still not sure that fixing low nk function will cure us, but cant hurt chasing after it. I have used immunovir for the last 6 months and i cant really say it has helped but then im at a point where im functioning well before i started immunovir.

cheers!!!

 

[Kati]

heapsreal I have to disagree with you, I believe that within an individual, the NK cell function inversly correlates with health status.

what I really wonder is who decides whether we have a biomarker or not?

 

[WillowJ]

This is so odd to me. Researchers keep saying NK function is low in ME/CFS, so I assumed asking this question on a popular ME/CFS site would garner lots of responses from patients who were at least tested for it. Who are these Doctors talking about then?

most doctors don't know to do this, because it isn't recommended by health authorities or the major clinics that doctors look to for guidance. Mostly those patients who are able to go to one of the specialists who test this (not all of the specialists do) or who are able to be in studies, would have had it tested.

However it is very well replicated in the literature that many ME patients have low NK cell function. This is not unique to ME/CFS and it overlaps with the supposedly healthy population. This would be similar to the usage of ANA test.

Although the literature does not say how it correlates with clinical status, we do know that it indicates certain things about immune dysfunction. A doctor should be able to draw certain conclusions from the test whether or not they know anything about ME. There is a commercial version from Quest which gives less information than the research version.

It is not expected of biomarkers for diseases in general to appear in 100% of affected patients. Some biomarkers for other diseases are in low levels of patients, like 20%, while some are very high, like estimated 95+% (of these it is sometimes disputed that this would be a real figure; some researchers think some patients are being missed).

 

[heapsreal]

heapsreal I have to disagree with you, I believe that within an individual, the NK cell function inversly correlates with health status.

what I really wonder is who decides whether we have a biomarker or not?

Severity not correlating with nk function comes from the nk function in cfs/me research study by bond/phanu in australia. The study was more specific looking into nk bright cells and nk dim cells. It also incorporated approx 100 cfsers.

My nk function tests were very low but i think there are sicker people then me with cfs, but i was also on antivirals when these tests were done.

Here's one round of tests, normal reference range if brackets. The other 4 test i had in the 18 month study were typical of these results-

nk activity 1 (13.8-34.8)
nk bright cells .93 (5-10)
nk dim cells 79.89 (60-88)
these tests are lucky if my nk function is working at all but i was able to hold down a job, but again maybe famvir antiviral i was on was helping me to function.

As for nk function being a biomarker, i think its one of the best they have come across but i dont know how it can become apart of a cfs/me diagnosis. More research maybe? I know Phanu are persuing their nk bright cell test as a diagnostic test for cfs/me and Dr peterson is on board with phanu.

 

[Kati]

Oneof the thing to keep in mind is the NK functiontest is not a standardized test. For instance the Miami Lab has a test that is different than the Quest lab test that is available commercially in the Us, which is measured in lytic unit (LU-30). Dr Fletcher's lab measures in percentage.

i would suspect that your usage of anti-viral has helped your functioning, remember that NK cells kills viruses. But who knows?

Research needs to compare apples with apples and pears with pears.

 

[heapsreal]

Oneof the thing to keep in mind is the NK functiontest is not a standardized test. For instance the Miami Lab has a test that is different than the Quest lab test that is available commercially in the Us, which is measured in lytic unit (LU-30). Dr Fletcher's lab measures in percentage.

i would suspect that your usage of anti-viral has helped your functioning, remember that NK cells kills viruses. But who knows?

Research needs to compare apples with apples and pears with pears.

But there would have been very few of us out of the approx 100 in the study that would have been on antivirals. Its very rare that any australians would be treated with antivirals for cfs/me as it just costs too much as it would be an off label prescription. So i would still be leaning towards phanu's findings of nk function doesnt correlate with severity of the illness. In this study they also found poor cd8 t cell function, so maybe its a combination of this that might correlate with severity of this illness??

 

[Tristen]

Poor NK function in me/cfs is not a new discovery. I had a very astute GP doc 15 years ago who had access to testing for me/cfs which included several immune values. I remember my test showing poor NK function as well as up-regulated TH2 (and other immune malfunction)......this added to the diagnosis of me/cfs (called just CFS at that time). What's happening today is just research looking deeper into prevalence and significance of these immune values.

I said somewhere that I didn't experience immediate noticeable changes in symptoms with the changes in NK function. Maybe it is connected down the line, but not right away like Il 6&8 seem to be.

 

[LiveAgain]

Thanks for the excellent responses. So the NK test researchers are using may differ from Quest. I'll hang my hope on that. I worry that one day a biomarker will be discovered and I'll test negative for it - and then what?

 

[Lotus97]

I'm not great at interpreting data, but I thought those studies I linked to earlier did confirm immune dysfunction in CFS/ME. And also what Rich said about NK cells measured to being low in perforin....

http://www.translational-medicine.com/content/pdf/1479-5876-10-88.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3120691/pdf/1479-5876-9-81.pdf

 

[jimells]

I just received the results of a "Natural Killer Panel". It looks to me to be a report of cell counts and percentages. I don't see anything that looks like a test of cell function, as in "how well are they working?" Are the NK function tests LiveAgain refers to something other than cell counts?

The CD56 cell count on my test was flagged as low at 75. The reference range is 90-590 cells/uL

 

[SOC]

I just received the results of a "Natural Killer Panel". It looks to me to be a report of cell counts and percentages. I don't see anything that looks like a test of cell function, as in "how well are they working?" Are the NK function tests LiveAgain refers to something other than cell counts?

The CD56 cell count on my test was flagged as low at 75. The reference range is 90-590 cells/uL

The function test is the harder one to get. It requires careful timing -- the blood has to be started in the lab in less than 12 hrs (or maybe 8?) from the time it was drawn. There are only a few labs that even do the test, so it gets complicated quickly.

So it's quite possible you got only a NK cell count, which is the more common test. Many PWME have normal count but low function.

Daughter and I had our first immune tests (at the Miami lab) after we had been on Valcyte about 2 years. At that point she was in remission and I was housebound. Interestingly, her NK cell count and function were both low and mine were at the high end of normal. So no correlation between functionality and NK cell function for us.

I did have low CD8 and high CD4 cells and some significant cytokine abnormalities. I was also taking some immune modulating supplements at the time. I had the immune tests done again about a year later when I hadn't been taking immune modulators, but I haven't got my hands on them yet so I don't know how the numbers changed.

 

[WillowJ]

I just received the results of a "Natural Killer Panel". It looks to me to be a report of cell counts and percentages. I don't see anything that looks like a test of cell function, as in "how well are they working?"

most labs get confused when asked to do a natural killer function test and do a natural killer count instead. when questioned, they may even assure you this is a function test, but it is not. If all they did is count the cells, it is a count. A function test will tell you something about the lysing ability of the cells.

A commercial version which will give you some information about the actual function of NK cells is "Natural Killer Cell Functional Assay, FC".

 

[LiveAgain]

Yes, I went to Quest and the first time they did NK count, not function so I had to go back and repeat the test making certain they did the function one. I had the test done twice and both times function was in normal range.

 

[heapsreal]

Yes, I went to Quest and the first time they did NK count, not function so I had to go back and repeat the test making certain they did the function one. I had the test done twice and both times function was in normal range.

Research further break down nk function into nk bright cells and nk dim cells. Nk bright cells is what they are finding abnormal. So its possible your nk functikn is normal but possibly your bright cell function is low. Also found abnormalities in certain t cells in cfs?? Have u tested positive to certain infections??

 

[LiveAgain]

I don't know Heapsreal - it's this http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=34184&labCode=SEA. CFS Dr. ordered it from there so I assume it's looking at the right thing. Yes, I've tested positive for EBV and HHV6.