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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Article: Dr. Peterson Update

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 22, 2010.

  1. Kati

    Kati Patient in training

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    I have been ill for 22 months now. In January my NK cell count was 100, function 12.4 %

    At the end of June, my NK cell count : 60 and function 4.9%

    My family dr doesn't have a clue what all these weird numbers mean...
  2. mojoey

    mojoey Senior Member

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    Hey Rrrr,

    I don't know how many of the 10 were XMRV+ but I assumed that was their rationale for taking it. I also don't know the duration.

    I heard from Daffodil that Jamie does not suffer from cognitive issues; I wonder if this will be a way to differentiate outcome with ARVs? I definitely have cognitive impairment, and it seems the majority of CFS patients do as well.

    My NK cell absolute count is 40, the lowest it's ever been, and my lytic unit 30% (measure of NK cell cytotoxicity) is 2, also the lowest its ever been.

    The coffee enema just flushes out the colon, intestines. It's obviously theoretical why this would help with flu-like symptoms. I have done coffee enemas for gallbladder/liver digestion, but water enemas are just for flushing and helping with the gut inflammation. Some speculate that it may help the immune system since 70% of it is in the gut, but I'm not gonna go out on that limb.
  3. mojoey

    mojoey Senior Member

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    Hey Kati,

    Before I saw Peterson, no one had any idea what this meant either. Even neutropenia was considered a blip. Hopefully you can find a doctor that either knows something about immune dysfunction/retroviruses or is willing to learn!
  4. Kati

    Kati Patient in training

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    Thanks MoJoey, I saw Dr Klimas at the end of June. Some of my blood is frozen for her incoming XMRV test, and I will get retested at VIP for serology- I was negative by culture in January.

    The current plan is to start imunovir as soon as my dr feels comfortable prescribing it - (sigh) and perhaps even LDN. I would certainly volunteer for clinical trials should I test positive.

    P.S. My lytic unit 30% was at 19 in January, and Dr Klimas' test doesn't seem to have the number but function is 4.9% which is low.
  5. Rrrr

    Rrrr Senior Member

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    where can you test for these? somewhere where medicare would pay for it?

    - RNase L levels
    - LMW RNase L
    - NK cell function (my quest lab results only showed the LU 30 test result, which was 25. it did not show function!!)
    - neutrophils
  6. Kati

    Kati Patient in training

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    Rrrr, VIP will test Rnase L. and NK cell function and count. If I understand well, LU 30 is function, you don't have the absolute count of NK cells.
    Neutrophils are part of a normal CBC that you would get at any lab, it's quite common. Of note, the neutrophils have nothing to do with NK cells. Neutrophils are the part of the white blood count that usually fight bacterial infections.
  7. acer2000

    acer2000 Senior Member

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    Lisa, have you retested your NK cell function and other immune markers since you have been avoiding mold and feeling better? Have they improved? I am very curious...

    A
  8. acer2000

    acer2000 Senior Member

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    Hi Kevin,

    Thanks for your post. I am wondering if you can expand on this. What are the differences between the people who take ampligen once and then don't have to continue it and the people who have to take it forever or else they get sick again? Surely these doctors who have treated so many people over the years with the drug have some idea what the difference between these two populations is? Also, do you know whether the people who didn't relapse went on to still develop cancer at a higher rate? I wonder if XMRV status has something to do with this.

    I am also a patient of Dr. P and he has brought up the subject of Ampligen with me as well. I am a male under the age of 30. I have tried a bunch of other stuff and basically nothing has worked. I dismissed Ampligen initially because I don't really see much information on it, just the original trials and a bunch of anecdotes (some good, some bad). I'd love to hear more about what you think about this topic.

    I agree with you, BTW... if you could take it for a year and it cost you 20k, and then you were better and didn't ever have to take it again, the 20k would be a drop in the bucket. But its not at all clear to me how to figure out whether you'd match up as a case that would play out like that. The flip side, 20k a year for a drug that isn't even approved for the rest of your life is a whole different deal.
  9. Tony

    Tony Still working on it all..

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    Hi Joey,

    Yeah, a couple of normal looking results there for me certainly. I've had ME/CFS for 10 years now and as you've asked after my welfare I'll send you some of the cake...:) I have other abnormal ones like high IL 8 (which is apparently an indicator of possible xmrv), and IL 10 is slightly raised. I function at about 30% on a good day and have most of the usual symptoms though nowhere near what I'd call severe. I can look after myself, walk a bit and not too much more.

    I was just reading hvs's vistide report again...damn fine result!
  10. abc123

    abc123

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    Did he get any more specific about XMRV infectiousness & transmission? Like possibly through saliva in addition to blood & sexual fluids, or not...?

    It would seem that if blood banks are now refusing CFS patients' blood, the CDC or somebody should come out with transmission prevention guidelines...

    Thanks...
  11. dannybex

    dannybex Senior Member

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    Hey Joey,

    I'm so sorry you've been doing so poorly, but am confident you will be able to improve.

    I was wondering if Peterson or anyone else has recommended any other treatments to help improve your gut function? Have you done another CDSA or Metametrix test lately?

    Dan
  12. mojoey

    mojoey Senior Member

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    Hey Dan,

    So sorry I missed your post.

    Peterson didn't recommend any tests for gut function. I did the Metametrix analysis last year and it was fine, was thinking about re-doing it but it's 400 big ones :(
  13. Daffodil

    Daffodil Senior Member

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    kati....why would klimas suggest not to send blood to VIP because the blood should be fresh...but then freeze your blood for later testing? thats odd, isnt it?
  14. Kati

    Kati Patient in training

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    all about technique... remember Judy Mikovits has been able to infect cell lines with someone's blood from the 1980's?
  15. aquariusgirl

    aquariusgirl Senior Member

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    Joey

    Yr Metametrix test was fine. Well that sentence stopped me in my tracks!

    A PWC with a clean gut. No parasites. No yeast. No dysbiosis. Woo-hoo.

    I would say your gut program is working.

    That's amazing.

    You were doing something called the sanpharma protocol right. Anything else make a difference?

    Sorry if this is off topic fo rthis thread.....
  16. mojoey

    mojoey Senior Member

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    My gut is the worst it's ever been despite all that! My h2s has gotten worse. Back in February it was normal, believe it or not. The last two times I did it was quickly positive (it's measured by change in color and the time it takes to change color).

    Cheney reported that XMRV could hide in the GI tract, which would lower the value of the metametrix test. What's the point in not having parasites, yeast, or dysbiosis (which I highly doubt is true at this moment) if you have a retrovirus in the tissues lining of your GI tract:

  17. aquariusgirl

    aquariusgirl Senior Member

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    What does yr phsyician recommend for H2s?

    Or what are you doing for it?
  18. mojoey

    mojoey Senior Member

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    I don't think there's anything that can be done specifically for the H2S as it's a byproduct, and even if there were it wouldn't make sense to splurge on a mop when the drain stays open. De Meirleir focuses on immune modulation, gut modulation, ABx, and metals. Nothing new there.

    I've done most of that, and now I'm just waiting to do more intense immune modulation (ampligen or other interferon-induction), treat the retroviruses and see what comes of that.
  19. dannybex

    dannybex Senior Member

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    Jeez, someone is marking up that test...or perhaps it's taxed more in your state? I had it done (with some friend's assistance of course) about 4-5 months ago and it was $191. Still, even that's a lot to pay...

    After all the hoopla re Metametrix, I must admit I was kind of disappointed. Although my 'good' bacteria was at nice, decent levels, they did find one parasite, but it was described as "taxonomy unavailable. A taxonomy unavailable finding likely indicates an ingested protozoan and not a human parasite. It does not indicate treatment unless patient symptoms and other inflammatory markers are consistent with parasite infection."

    Well, that wasn't exactly helpful. I may not have inflammatory markers in my gut (who knows...the test didn't suggest anything), but most likely do elsewhere, and definitely have more than enough "symptoms". They also found high-ish levels of mycoplasma species (no specific strains) and streptomyces (not specific). Again, not exactly helpful considering the hype about how their testing is so far superior to others. Doc gave me a few things to deal with these, but haven't been able to afford to get back to see if there are any changes. But when I can...I'm not sure I'd go w/Metametrix.

    I understand (as much as my Sesame Street brain can) your current plan/approach to treating the retroviral issue, but since gut issues can wreak such havoc on one's overall health, that if there's anything else you could do that might help strengthen/balance it...that that might help...as you continue to look into anti-retroviral possibilities...you know, just in case it's due to something other than XMRV.

    Like eating at Taco Bell. :D
  20. aquariusgirl

    aquariusgirl Senior Member

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    dan
    did u run the GI FUnction Profile from metametrix or one of their other tests?.
    just wondering if you're comparing apples to oranges.
    as far as I can see, the GI function goes for about $400-450....depending who u go thru.

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