1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Normal NK Function

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by LiveAgain, May 13, 2013.

  1. Ema

    Ema Senior Member

    Messages:
    3,412
    Likes:
    3,769
    Midwest USA
    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
     
  2. LiveAgain

    LiveAgain

    Messages:
    61
    Likes:
    23
    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?
     
  3. Lotus97

    Lotus97 Senior Member

    Messages:
    2,015
    Likes:
    421
    United States
    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.
     
  4. Lotus97

    Lotus97 Senior Member

    Messages:
    2,015
    Likes:
    421
    United States
    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:
     
  5. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    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 likes this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,309
    Likes:
    4,661
    australia (brisbane)
    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!!!
     
    Tristen likes this.
  7. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545
    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?
     
  8. WillowJ

    WillowJ Senior Member

    Messages:
    3,098
    Likes:
    2,714
    WA, USA
    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 likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,309
    Likes:
    4,661
    australia (brisbane)
    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.
     
  10. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545
    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.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,309
    Likes:
    4,661
    australia (brisbane)
    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??
     
  12. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    421
    Northern Ca. USA
    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.
     
    heapsreal likes this.
  13. LiveAgain

    LiveAgain

    Messages:
    61
    Likes:
    23
    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?
     
  14. Lotus97

    Lotus97 Senior Member

    Messages:
    2,015
    Likes:
    421
    United States
    Tristen likes this.
  15. jimells

    jimells Senior Member

    Messages:
    466
    Likes:
    700
    northern Maine
    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
     
  16. SOC

    SOC Moderator and Senior Member

    Messages:
    5,357
    Likes:
    6,414
    USA
    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. o_O 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 likes this.
  17. WillowJ

    WillowJ Senior Member

    Messages:
    3,098
    Likes:
    2,714
    WA, USA
    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".
     
  18. LiveAgain

    LiveAgain

    Messages:
    61
    Likes:
    23
    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.
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,309
    Likes:
    4,661
    australia (brisbane)
    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??
     
  20. LiveAgain

    LiveAgain

    Messages:
    61
    Likes:
    23

See more popular forum discussions.

Share This Page