Invest in ME Conference 12: First Class in Every Way
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Coxsackie A7, A16, A24 now negative and HHV-6 is half :D

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Slicky, Oct 6, 2014.

  1. Slicky

    Slicky

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    On 4-7-14 kiddos lab results were:



    Coxsackie A7 1:160 Neg <1:10

    Coxsackie A16 1:160 Neg <1:10

    Coxsackie A24 1:160 Neg <1:10



    HHV-6 10.54 positive > 0.99



    EBV >600 positive > 21.9





    On 9-26-14 Kiddos labs were:





    Coxsackie A7 Negative Neg <1:10

    Coxsackie A16 Negative Neg <1:10

    Coxsackie A24 Negative Neg <1:10



    HHV-6 4.71 positive > 0.99



    EBV >600 positive > 21.9





    I suspect her EBV is going down as well, but it was likely soooooo high the numbers are simply not below 600 yet.



    _____________________________________________________________________________



    We have been following Steven Burner's EBV protocol alternating Isatis 30 days and then Lomatium for 60 days, otherwise pretty much at full doses as he recommends. She appears to have more energy and fewer episodes.



    During this time we titrated completely off zithromax and augmentin but added low doses of minocycline.



    I wanted to pass on the great news [​IMG].
     
    Last edited: Oct 6, 2014
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  2. Christopher

    Christopher Senior Member

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    Could just be the minocycline. At one point doxy was a huge benefit to me without anything else.
     
  3. Slicky

    Slicky

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    We just started the mino about 10 days ago, so just a few days before the blood draw. We have used the EBV protocol for 4 months at full doses and 1 month of titrating up. It took me almost 4 months to get her off the zith and augmentin.

    I am going to have go with it is the protocol since that was the only additions during that roughly 5 month period.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @Slicky that is great news and I love hearing the updates on how much your daughter is improving!
     
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  5. Slicky

    Slicky

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    Sweetie, Daddy and Mommy are going to the state fair tomorrow :) We are usually there from 11am to 9-10pm, so long as she can handle it. We take breaks and pack good food to eat rather than the expensive "food" usually offered. That helps her a lot to refuel properly. I am thinking she will do really well this year :D.
     
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  6. Hip

    Hip Senior Member

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    @Slicky
    The coxsackievirus A group, whose test results you listed above, are not associated with ME/CFS; only the coxsackievirus B group and the echovirus group are linked to ME/CFS.

    Only ARUP Lab offers tests sensitive enough to detect chronic coxsackievirus B in ME/CFS patients, according to Dr John Chia.
     
  7. halcyon

    halcyon Senior Member

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    I have not heard this before, where have you seen this stated? I just assumed that Coxsackie A wasn't focused on as much because there isn't a commercially available serum neutralization test; ARUP and Focus only offer a complement fixation test.

    That does look like good news on the HHV6 though. The HHV6 Foundation says that an ELISA result greater than 5 indicates an active infection so she's headed in the right direction.
     
  8. Hip

    Hip Senior Member

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    If you look at all the early British research on ME/CFS, and look at Dr Chia's more recent research, you only see coxsackievirus B and echovirus mentioned and found in patients.

    I haven't seen a statement that explicitly says "coxsackievirus A can never cause ME/CFS," but I have never seen anyone ever mention coxsackievirus A in association with ME/CFS, nor any studies that link coxsackievirus A to ME/CFS.

    The most common disease caused by coxsackievirus A is hand, foot and mouth disease.
     
    Last edited: Oct 19, 2014
  9. Slicky

    Slicky

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    Kiddo is also positive for Coxsackie B-4 and b-6, but the doc forgot to retest those this round of blood work. We will check up on those soon.
     
  10. Slicky

    Slicky

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    If you need more info than Hip provided a post or two ago, then check with hip on that one as I have not done any research on this.
     
  11. halcyon

    halcyon Senior Member

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    I was just rereading Chia's 2005 paper and came across this:

    "Three patients with strongly positive enteroviral RNA in their PBMC had no detectable neutralising antibody to the 11 enteroviruses tested, which suggested that infections could be caused by the other echoviruses or enteroviruses not identified by commercially available neutralising antibody tests."

    The 11 enteroviruses being CVB 1, 2, 3, 4, 5, 6 and echo 6, 7, 9, 11, and 30 that ARUP can test for.
     
  12. Hip

    Hip Senior Member

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    That is quite an interesting possibility and interpretation.

    But I wonder if another interpretation might be that some ME/CFS patients seem to cease production of neutralizing antibodies. There was a recent thread on this forum about this very topic of the disappearance of neutralizing antibodies in some ME/CFS patients, but I can't seem to find that thread at the moment.
     
  13. halcyon

    halcyon Senior Member

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    I saw that thread as well. It's totally a possibility and that's why PCR is probably a slightly better method, though it has it's own problems which Chia discusses in that paper.
     
  14. Hip

    Hip Senior Member

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    It's not clear to me why DNA microarrays (such as the ViroChip or GreeneChip) are not used to detect the viruses present in the tissues of ME/CFS patients. DNA microarrays work by finding the genetic fingerprints of all the pathogens present in a sample in one go. Thats is, using just one blood or tissue sample, it will detect all viruses present, and even detect new and unknown viruses by picking up their new genetic patterns.
     
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  15. Tired of being sick

    Tired of being sick Senior Member

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    I look at you as the Angel on my shoulder!
     
  16. halcyon

    halcyon Senior Member

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    Like most things I'm sure it comes down to cost. That article mentions a cost of several thousand dollars for a single run.
     
  17. Hip

    Hip Senior Member

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    I believe that refers to deep sequencing costs, rather than microarrays. I have heard of cases where hospitals will use DNA microarrays for patients when they are stumped in terms of identifying an infection the patient has.
     
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