Poll The Natural Killer Cell Dysfunction Poll

Discussion in 'Testing and Diagnosis' started by Cort, Apr 19, 2015.

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Have You Had a Natural Killer Cell Functioning Test Done - and What Were the Results

  1. I have not had an NK cell functioning test done

    43 vote(s)
    51.8%
  2. I have had an NK cell functioning test done - my results were normal

    1 vote(s)
    1.2%
  3. I have had an NK cell functioning test done - my results were somewhat lower than normal

    7 vote(s)
    8.4%
  4. I have had an NK cell functioning test done - my results were quite a bit lower than normal

    15 vote(s)
    18.1%
  5. I have had an NK cell functioning test done - my results were scary low

    17 vote(s)
    20.5%
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Alice likes this.
  2. Linda B

    Linda B Active Member

    Hi Cort,
    Thanks to you and your team for this brilliant web site. Congratulations.
     
    Farmgirl, Susan BP, Patty May and 4 others like this.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Gotta like that post (I clicked the like button)...
    Thanks very much!
     
    Farmgirl, concepcion and bendygirl like this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    We've only had ten NK cell test results so far but everyone has been below normal.
     
    kate brunton likes this.
  5. Sparrowhawk

    Sparrowhawk New Member

    Great survey, would love to see more attention paid to this aspect of ME/CFS. I was interested to see the comments from your related article post, where some folks actually had much *higher* acting/overactive immune systems.
    The odd thing for me is that I am in the category of "don't get sick" other than my usual symptoms, but my NK cell activity is ultra low. Does that mean I just don't show symptoms and all the pathogens are having their merry way with my body? Unknown.
     
    ankaa and kate brunton like this.
  6. pat0814

    pat0814 Member

    My first NK Cell Activity test was run in 1992 and came back at 12.2%. The range at the lab said it should have been 24%-53%. By 1997 my activity level had dropped to 4.4%. It gradually improved over the years and was at 18.94% in 2014 which is the highest it has ever been (although still low) and it took 22 years to get there!
     
    kate brunton likes this.
  7. zenmom

    zenmom Member

    I am a patient at Dr Nancy Klimas's Neuroimmune Institute at Nova Southeastern University in Florida. They run a comprehensive immune function panel on me (blood samples) approximately twice a year. My immune profile has improved a lot since I first started going there about 3 years ago, although this last round indicated Epstein-Barr Virus reactivation and some very high inflammatory markers. But at least they are looking.
     
    ankaa, kate brunton and concepcion like this.
  8. Susan Clark

    Susan Clark New Member

    Has anyone considered or have had autologous stem cell treatment for a cytokine "reboot"? If so, any advice?
     
  9. Lissa

    Lissa Well-Known Member

    NK cell activity was "normal", and NK cell count was within range, but CD19 (B cells) were low; CD4 (Helper cells) and CD3 (T cells) were both high. Not sure what any of that means, other than it proves that something strange is going on!
     
  10. zenmom

    zenmom Member

    Dear Susan,
    I had that procedure done in early December (about 4 1/2 months ago) by a doctor who is located in Miami. I decided to do it because one of the other patients at Dr Klimas' clinic had reported good results from it. I knew it was a shot in the dark, so to speak, since there was no extensive research on this procedure and its results. My reasoning was that since it was my own stem cells, I was unlikely to have a bad reaction, and there were no other potential treatments on the near horizon that might be helpful.
    The procedure to "harvest" my stem cells from abdominal fat felt really weird, but was not particularly painful. Getting them re-infused after they were separated from the fat cells and treated to activate them was nothing more than having an IV drip for a little while.
    I'm sorry to report, however, that I haven't felt any improvement since then. I'm over 60 and have had this illness for a long time. From what I've heard, the longer you've had it the less likely you are to recover.
    Having the procedure done in the U.S. meant there was no "multiplying" of the harvested stem cells, as I have read they do with offshore stem cell clinics. I don't know if that makes a difference. I think stem cell therapy is promising, but still in the very early stages. It's still an experimental procedure, and definitely NOT covered by health insurance. If you can afford it, and are interested in trying it, read everything you can about it and then make your own decision. Just know it's not a sure bet.
    Good luck!
    Regards,
    Marcia
     
    Patty May likes this.
  11. ankaa

    ankaa Well-Known Member

    how does Klimas define "ebv re-activation"? which test defines it? there are several ebv tests... thanks
     
    Lissa likes this.
  12. ankaa

    ankaa Well-Known Member

    what does Dr Klimas recommend to increase NK cell function? what does she recommend to decrease inflammatory markers? I super low NK cell function, and as far as I know, there's no solution... Also, I can find anything to bring down all the inflammation in my body...
     
  13. Strike me lucky

    Strike me lucky Well-Known Member

    Klimas use to recommend immunovir from what i have read.

    I personally have used cycloferon, a substance used in eastern block countries for viral and bacterial infections, it stimulates the bodies own interferon levels which increase nk activity.

    I have found it helps but not a cure. Also best used in short courses of a week or 2 etc as the body sèems to acclimatize to its effects. I used it when i have a crash or feel like viruses are reactivating.

    Not alot of info on this substance that explains it easily but many studies on pub med done in russia and the Ukraine. It appears to be related to or is arachidonic acid, which can change different cytokines etc which seem to me to lower inflammation and improve immune function.
     
    Farmgirl and ankaa like this.
  14. ankaa

    ankaa Well-Known Member

    interesting..... is inosine really similar to immunovir? I've read that it is... Inosine is the natural alternative to immunovir... Any info on inosine would be welcome

    Interesting re arachidonic acid; mine is super high as is my inflammation... If there's a way to lower arachidonic acid, it might help me... do you know of anything else that lowers arachaidonic acid?
     
  15. Strike me lucky

    Strike me lucky Well-Known Member

    I dont think arachidonic acid is always inflammatory as cycloferon as anti inflammatory properties andhas arachidonic acid in it.

    They say inosine is similar to immunovir but my experience i didnt get much out of either but tests showed a slight increase in nk numbers on immunovir but nothing on inosine. Cost wise inosine is cheap and worth a shot. The above is just my experience, others have found it more helpful.

    http://brandmedicines.com are the cheapest i have found for immunovir/isoprinosine. When u take the full 6 pill dose a day the cost can add up so important to take that into account. From what i have read about klimas, she recommends using it long term as can take several months to see nk function to improve.
     
    ankaa likes this.
  16. Remy

    Remy Administrator

    I haven't a clue where one could get their hands on low dose IL-2, but it always makes me mad when I see studies like this and wonder why in the heck haven't these things been tested in ME/CFS? I'm still not convinced increasing NK cells will be curative in any way given that it's such a nonspecific marker, but it seems like it should be easy enough to rule in or out.

     
    Strike me lucky and ankaa like this.
  17. Seven

    Seven Well-Known Member

    To be honest I take all 3 since my body cannot tolerate immunovir alone at full dose, so I supplement the other amount with inosine,. But I saw the most increase on NK when I up the LDN to 9mg a day.

    Be aware of uric acid raising when on immunovir, you have to check every 3 months ( I think it is) and then I get checked the cbc and methylation panel. When we take these drugs we monitor liver and the other stuff.
     
    ankaa likes this.
  18. ankaa

    ankaa Well-Known Member

    do you know if inosine raises uric acid as well?
     
  19. Strike me lucky

    Strike me lucky Well-Known Member

    Australian study distinguished different nk cells, bright and dim cells. Nk Bright cells they found low in cfs me.

    Cycloferon i have used and improves symptoms increased my nk function tested significantly but when looking at the nk bright cells, it didnt alter their function at all.

    So really i think we need something more specific then just increasing nk function but increase nk bright cell function to find out if treating nk function will help. From the research nk dim cells were normal with cfsers and healthy control group.
     
    ankaa and Remy like this.
  20. Remy

    Remy Administrator

    Yes, it does. I've done labs that show the increase.
     
    ankaa likes this.
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