catly
Senior Member
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- outside of NYC
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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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I don't know, but let us know if you find out. My daughter has the same pattern.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.
I don't know, but let us know if you find out. My daughter has the same pattern.
She has hhv6 and ebv, both difficult to keep latent. I'm not confident she's been adequately tested for tick-borne diseases.I will. Does you daughter have lyme disease? Any co-infections?
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.
NK cell count is done by many labs, but I think the NK cell functional assay is only done a few places. I've been told Mayo does it. I get mine done at Dr Klimas' lab at NOVA Southeastern University.
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?
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.
@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.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.
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 ;(.
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.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.
No, I did not see this study @Nielk, thank you for bringing it to my attention.Have you seen this study by Hemispherx - Ampligen for low NK cell function?
http://forums.phoenixrising.me/inde...-hemispherx-on-cfs-samples.34921/#post-545447
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 ...