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Immune Function, Remission and a real mystery

Discussion in 'General Treatment' started by SOC, Dec 1, 2012.

  1. SOC

    SOC

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    Many of you have heard that my daughter has been in remission for over a year after about 18 months on Valcyte. We have never considered this a cure. She still takes Valtrex to keep herpesviruses suppressed.

    She has no ME/CFS symptoms. Physically she does everything she wants to without problems. She has not tried competitive sports or heavy aerobic activities, yet, so we don't know for sure what her situation is there.

    We just got her immune tests from September -- no analysis/interpretation from the doc, yet. Here's the kicker -- her NK numbers are low (1.7%), NK function is low (4.25%), CD4+ high and CD8+ low (like me). Her cytokines look like a mess -- all over the place with quite a few very high or very low. None of this surprising for a PWME, but I expected it to look a lot better than it did for someone doing as well as she is.

    I wonder if our immune tests are always going to look flaky, even if we are symptom-free (or nearly so) with treatment. Or maybe she doesn't have as many symptoms because we caught the infections early and treated them aggressively before much damage was done. Or......?

    I expect that even though she feels fine, the doc will add something to her treatment to improve her NK cell function. We'll see in about 10 days. Meanwhile, we'll be wondering about this dichotomy between symptoms and immune test results.
     
    Gavman, ukxmrv, taniaaust1 and 3 others like this.
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    'Tis a puzzlement.
     
    MishMash likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    who is your doc? Are they fans of immunovir or some othet immune mod??
     
  4. SOC

    SOC

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    Dr Rey. She does use immunomodulators when she feels they are warranted. I'm guessing that she'll recommend Imunovir or maybe some form of AHCC. We'll see.
     
  5. Shell

    Shell Senior Member

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    SOC that is strange and leaves me wondering what happens in remission. It looks a but like HIV in some ways. So long as the HIV+ person takes the meds they can stave off AIDS and all it's hideous extras but if they either don't get meds or stop them then the whole shabang will hit them like a train.
    I hope your dd remains well and can have a full and energetic life. Thanks for keeping us updating on this. Stories like this are like little lights in the dark.
     
    Little Bluestem likes this.
  6. SOC

    SOC

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    I'm beginning to wonder about that, myself.
    Thanks. I'm glad we have Dr Rey on our side to help keep her going strong.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wish there was more people writting about iimunovir experience and how it has affected their nk function. I dont have access to nk function testing now. my nk numbers have always been low normal so we will see how immunovir affects my nk numbers when i get my next lymphocyte sub set test.

    I was also thinking that if nk function stays low, maybe another part of the immune system upregulates to take over the role of the nk cells, eg maybe cd8 t cells increase their function to compensate etc??
     
  8. SOC

    SOC

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    @ heapsreal
    I had been taking supplements that can (supposedly) affect NK function up to a month before my first immune function tests. My NK function tested high normal. I wondered afterwards if a month off was not long enough to clear the effect of the supplements.

    For my second round of immune function tests (almost a year later), I will have been off any immune modulating supplements for at least 6 months. It will be interesting to see if my NK function is still high normal. I'm hoping this will give me a clue as to whether I should continue to take immune modulators even though I've cleared all the known infections.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    you might be right that it takes longer then a month for the affects to wear off, immunovir they take every 3rd month off and from what i have read there hasnt been any mention of nk function going down during this month, but then again not alot has been reported on this either.
     
  10. taniaaust1

    taniaaust1

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    Interesting post. Thanks for it. I'd be very interested to hear if those things stay about the same over time (say 1 year more) with her health still being good.

    I personally think I may of had immune abnormalities way way back before getting ME which I believe may of made me susceptable (that along with genes.. but maybe the gene connection affects immune system in some way?)
     

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