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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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What is your NK cell function?

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

  1. Aerose91

    Aerose91 Senior Member

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    I'm wondering if it's consistent that most or everyone with ME/CFS has very low NK cells? I had mine tested through quest and on a scale of 8-170 my NK cells were 4. Dr Enlander said that this is very low but normal for this disease. Do other people have counts this low?
     
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Low NK absolute count is an indication but low NK function seems to be more important. See if you can get that tested.

    Sushi

    P.S. you will find a lot of threads here on NK if you use google site search
     
    aimossy likes this.
  3. Nielk

    Nielk

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    This I believe is a NK function test? Mine also through Enlander and Quest was a 3.
     
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  4. Aerose91

    Aerose91 Senior Member

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    Your right, upon second inspection it is NK function not count. It's measured by LU30 whatever that means. I guess we're pretty bad huh? Is that pretty common? And would I expect that if I can raise my NK function that my condition could/should improve?
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is common, yes, but doesn't always correlate with how you feel and doesn't always go up when after treatment. Confusing? :rolleyes:

    Yes!
    Sushi
     
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  6. Aerose91

    Aerose91 Senior Member

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    ;)If only it was that simple
     
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  7. SOC

    SOC Senior Member

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    My daughter's NK cell function went from low to high over the course of a year. She has been fully functional for 2 years with no PEM, so the increase in NK cell function may be part of a normal healing process. It's also possible that the "green" pills she has taken regularly this year is improving her NK cell function since it has "Super Beta-Glucans Mushrooms" (among lots of other things).
    The pill form: http://www.iherb.com/Paradise-Herbs-ORAC-Energy-Greens-120-Veggie-Caps/23550?ic=1&flt=0000
    The powder form: http://www.iherb.com/Paradise-Herbs-ORAC-Energy-Greens-6-4-oz-182-g/12309?ic=2&flt=0000

    Her NK cell count is still very low.

    My NK cell function has been normal to slightly high over the same period. I, however, am still largely housebound. So a good NK cell function is not a guarantee of health. :( I have low CD8+ cells, extremely low IL-17 and IL-23, and low IgM and IgG, so those may be the problems in my case.

    FWIW, I also take the High ORAC Energy Greens.
     
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  8. Aerose91

    Aerose91 Senior Member

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    Thanks for all the help, SOC and I'm so sorry to hear you are still sick. No one should have to live a life like this.

    I am starting LANK, some mushroom compound from dr enlander so I guess the ingredients are the same. If I may ask, how old is your daughter? I'm 29 now and I know age has a lot to do with our recovery rates
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  10. helios

    helios

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    thanks for the link HR. I am interested in this. I am going to see a specialist on my immunology soon. I have very low T-Cell & NK cell count. I talked to someone on a lyme forum who had very low levels like I did and they were offered blood transfusions. I have been taking medicinal mushroom extracts recently but have not felt any better for it yet.
    I don't quite know if its a consequence of the infection or if the low immunology will in fact hamper recovery of the infection.
     
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  11. Aerose91

    Aerose91 Senior Member

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    I asked this same question to my doctor and he said it's the viral infections that are keeping the NK cells down. I don't know about other viruses but I know HHV-6 directly targets and infects NK cells. I would guess attacking the viruses atthe sandbags as building the NK cell function would be a good tandem approach. I'm starting LANK soon myself and am hoping for some progress
     
  12. Tristen

    Tristen Senior Member

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    Yes, low NK cell function has long been recognized as one of the most defining aspects of this disease. My NK count and function have remained abysmal for years. Those values did improve while on AV therapy, but were not directly correlated with changes in symptom severity. The high rate of cancer in me/cfs is likely related to this dysfunction.
     
  13. SOC

    SOC Senior Member

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    My daughter is 21 yo. She had the initiating illness at 12yo, was largely in remission for 5 years and then crashed badly (and stayed crashed, no return to remission) after getting a live herpesvirus (chicken pox) booster shot. It probably reactivated HHV6 and EBV for her. We got her on Valcyte about a year after she crashed badly. She took it for about 20 months after which she was fully functional. She still takes Valtrex to help keep the herpesviruses latent (or mostly so).

    It seems to me that the younger you are, the better your chances are for recovery or near-recovery. Even so, it doesn't happen over a few weeks -- more like several years.
     
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  14. PNR2008

    PNR2008 Senior Member

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  15. Tristen

    Tristen Senior Member

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    Always makes me sad and angry to hear of really young people with the disease......but your right, it seems they do have better chances of arresting the disease progression when caught early.

    I've never been on board with the theory that me/cfs has a genetic component....regardless I've really worried for my girls. So far their OK. I was really surprised watching Dr Peterson's talk in Norway the other day when he said that he believed there was a genetic aspect involved. I'm the only one in my family with me/cfs.....but there is lots of autoimmune disease, mostly RA.
     
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  16. SOC

    SOC Senior Member

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    I buy into the possibility that there's a genetic component. We do see quite a few parent-child illness sets but not many husband-wife sets which suggests that it's not only an infection. It may be an immune weakness that makes us more susceptible to the root infection or less able to keep common infections in check.

    How old are your girls? If they're under 10yo, you might want to pay more attention/have them tested after puberty as that seems to be somewhat common time for symptoms to start showing. Must be that hormone thing -- for females anyway.
     
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  17. Antares in NYC

    Antares in NYC Senior Member

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    I did not have my NK cell function tested yet, but I had my NK cell levels measured a couple of times recently, and they were alarmingly low (1.8%). As I read, low NK functioning is a defining treat of this disease.

    I have also noted that it's common for ME/CFS patients to also have low or deficient levels of IgG type 2 and IgG type 4. The immune implications are starting to seem more than clear.
     
  18. Tristen

    Tristen Senior Member

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    Daughter is 35, and I have worried most about her because she had a severe traumatic brain injury, which is another known trigger. Granddaughter is 16.....mid puberty. So far all's well for both of them.

    The RA (Rheumatoid Arthritis)in my immediate family is common and severe. My mother has me/cfs like symptoms when she has severe flares with the RA......but when it calms down, she has not a hint of me/cfs, just the RA joint stuff.
     
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  19. catly

    catly Senior Member

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    Mine was 6 when originally tested end of May 2013, after roughly 5 months on Valcyte and 4 months on LDN it is up to 16.
     
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  20. Ruthie24

    Ruthie24 Senior Member

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    Mine was 6 in Jan. 2013. After 6 months on high dose Famvir and 4 months on LDN it was 3.:(
     
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