A disease with two faces? Re-naming ME/CFS
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What is your NK cell function?

Discussion in 'General ME/CFS Discussion' started by Aerose91, Nov 5, 2013.

  1. catly

    catly Senior Member

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    I had my last NK testing done by Quest and it was fully covered by my insurance and in line with my first test done which was done through BioReference laboratories.
     
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  2. Thinktank

    Thinktank Senior Member

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    Done by REDlabs in Belgium:
    NK cells CD16/CD56 = 9 (range 3 to 95)
    Perforin mRNA expression (NK cell activity) = 864 (range 250 to 750)

    What does that really say in someone with lyme? Lowish NK cell count and high NK cell activity.
     
    Last edited: Jan 10, 2014
  3. SOC

    SOC Senior Member

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    I don't know, but let us know if you find out. My daughter has the same pattern.
     
  4. Kati

    Kati Patient in training

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    Getting tested for NK cell function is done only at a few centres via quest, in the USA. Your blood sample is time sensitive in order to have the test yield valid results- so ensure that timely shipping is done on that sample.
     
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  5. Thinktank

    Thinktank Senior Member

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    I will. Does you daughter have lyme disease? Any co-infections?
     
  6. SOC

    SOC Senior Member

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    She has hhv6 and ebv, both difficult to keep latent. I'm not confident she's been adequately tested for tick-borne diseases.
     
  7. Aerose91

    Aerose91 Senior Member

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    Im in Connecticut and they do my NK function here. I just have to do it mon-thurs so they can overnight it to california to be read
     
  8. Kati

    Kati Patient in training

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    Just know that time of draw matters- it needs to be drawn just before shipment- like I said it's time sensitive.
     
    SOC likes this.
  9. kisekishiawase

    kisekishiawase sad

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    I didnt know nk cell and nk function are different. :(
    Is nk cell useless? Is it usually tested for immunity only and the nk function/activity for specific infection?
    Whats the difference between them?
     
  10. Aerose91

    Aerose91 Senior Member

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    Someone here can probably explain this better than me but the problem we have is our NK cells not scavenging like they should. We may have a normal count but that doesn't mean anything if they aren't working
     
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  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I did not read this whole thread but my NK cell functioning back in July 2014 was five (done by Quest.) I never had it tested prior to that so no baseline when I was well. I just had it re-tested on 12/23/14 but results are not back yet. I am so curious to see if it increased from five after six months on Famvir but my expectations are very low and I was told not to expect an increase. Also, if I am not feeling better, the number on paper is meaningless to me. But I think it could be very important from a research perspective if the government ever actually decides to fund some research.

    ETA: I hope I didn't already post this earlier in this thread and not remembering! Sorry if it is a duplication?
     
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  12. NK17

    NK17 Senior Member

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    Last time my NK cell function was tested via Quest lab in California it was 4 LU.
    I've been tested several time since I've been diagnosed by Dr. Kogelnik and confirmed by two other ME doctors. At my highest it was 17 LU, back in 2011 when I was much more functional and much less ill. Back then I was on Famvir for almost a year, but I've been deteriorating and I've seen my NK function mildly fluctuate up and down over the years.
    It is totally personal and anecdotal, but I feel that the more I'm in a flare up phase of ME, the lower my NK cells function is and no pharmacological intervention has so far helped me feel better and/or raised my NK function.
    I don't want to discourage anybody though from seeking expert advice from an ME doctor or start any pharmacological therapy tailored and appropriate to their specific case.
    I'd also add that rest is tantamount if you want to increase your chance at recuparating some level of functionality.
     
    Last edited: Jan 13, 2015
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  13. Nielk

    Nielk

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    It is interesting that you noted that you NK Cell function fluctuates according to the way you feel. I only tested once for NK function, by my ME specialist, has been testing my viral load each time I go to him. I have noted that when I am in a crash, my viral numbers go up as well.
     
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  14. NK17

    NK17 Senior Member

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    @Nielk I also should report that my viral loads (HSV 1-2, EBV, CMV, HHV6, VZV) since being tested and retested have been constantly high and so far no anti-viral I've taken has made them budge.

    But I personally know somebody who has had success at treating her ME and return to a decent quality of life, with A/V treatment and lifestyle and dietary changes although her viral loads have not gone down.

    I personally suffer from a very long standing case of ME, which has been ignored for decades. My case is also complicated by other co-infections and difficulty in being able to abstain from day to day normal life activities or to put it more bluntly I can't work anymore and can't afford the help that I'd need in order to rest and possibly gain back some health.
    Unfortunately I know that you and many others here on PR know too well what I'm talking about ;(.
     
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  15. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @NK17

    My titers on EBV and VZV have not gone down on six months of Famvir and the VZV actually went up! I have not tried any other anti-virals yet and still waiting for the NK functioning results which take weeks for Quest to process.

    What did she do?!!!! I want to know her secret :D. I don't care what my viral or NK tests say if I can feel better and function better.

    I have not been ill as long as you have BUT I still believe if they do discover the mechanism and treatment that actually works, then it will work for all of us including those who have been ill longer. We just have to keep helping the scientists to raise the money so they can do the work. And I totally understand your second part about having to give up our careers and not being able to fully rest because we have families and relationships that need us. But we are doing the best we can with the circumstances that we have been given and you are an inspiration to me that you keep fighting every day against this illness and never give up :hug: :heart:
     
    Last edited: Jan 13, 2015
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  16. Nielk

    Nielk

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    Gingergrrl likes this.
  17. Antares in NYC

    Antares in NYC Senior Member

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    Same here. I have been on daily Famvir for 16 months now, and if anything my EBV and HHV6 titers have gone way, way up. The EBV numbers are off the charts. In terms of symptoms, nothing has really improved.
    I tried Valcyte, but he side effects were terrible. I could not continue beyond a few weeks.

    I have not checked NK functioning recently, but tested the NK and CD57 count, which were dangerously low a year ago and are now even lower.

    Is this normal? What is going on?
     
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  18. NK17

    NK17 Senior Member

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    No, I did not see this study @Nielk, thank you for bringing it to my attention.
    I'm dreaming of a day, in the not too far future, when pwME will have a selection of choices of drug treatments, one of which is Ampligen.
    Dr. Kogelnik speech at the NIH last month was centered on pharmacological intervention for ME and Ampligen was in good company between Valcyte and Rituxan.
    Of the 3 drugs Ampligen seems the least attainable one, with only 2 or 3 doctors in the US dispensing it and I'm not even going into the cost of the treatment ...
    I guess I need to start my P2P document review and submit some comments ;).
     
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  19. SOC

    SOC Senior Member

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    Antibody titres do not directly track with level of infection. Antibody titres can stay high for years after the infection is cleared. That's the reason doctors who don't use their brains claim that high titres only mean a past infection, not a chronic one.

    If your antibody titres are rising, that's bad. If they stop rising with AVs, that's a good sign. Beyond that, you can't measure treatment success by antibody titres. Symptom reduction is a better, if vague, measure.

    FWIW., my daughter increased her NK cell function from quite low to slightly high with Inosine. Unfortunately, her NK cell number is still very low. So she's only got a few of the little beggers, but they're working their tails off. :p
     
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  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @NK17 Who are the doctors in the US that dispense Ampligen? I read it is only available as part of a clinical trial and not FDA approved, is that correct?

    Has anyone on PR tried it? (I am asking everyone, not just you LOL.) Also, is it only in IV form? I am wondering as a person who failed IV saline if I could ever do well with any med in an IV form?
     
    NK17 likes this.

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