The 12th Invest in ME Conference, Part 1
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My results for Hips Roadmap for Testing

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Aurelius, Dec 1, 2018.

  1. Aurelius

    Aurelius

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    Dear Community,

    as someone who suffers from fatigue and related symptoms and who has had poor experiences with doctors, rather recently I came to the Roadmap for Testing and Treatment, gathered by Hip (thank you for that.
    Before I was not aware of CFS/ME. According to the criteria for CFS, I would qualify, although not a severe one, as I have seen that some people are bedridden.
    I also still have to rule out other root causes. As for any symptom I could come up with a cause, which could be plausible (e.g. very low testosterone for muscle weakness, etc.).

    I am therefor very grateful for the roadmap and took most of the tests available to me (for example no CVB and EV testing). It would be of great help to me, if someone with more insight into the matter, could have a look on the results.
    In general the roadmap speaks of antibody titers in a format like e.g. 1:320. My lab results came back in U/ml, and I dont know how convert these to correctly interpret the results.

    Here are the results so far. I will just mention the abnormal levels in detail. Reference is in brackets ():

    Chronic lyme disease:
    Lyme IgG: >240 (<10) U/ml
    Lyme IgM: 15 (18) U/ml
    Lyme IgG (Blot): positive (negative)
    Vlse: ++
    DbpA: +
    Osp17: ++
    p21: +
    p39: ++
    p43: +
    p83: ++
    (I dont know what these mean, but apparently they have a system, with the more + meaning the more positive)

    Hypothyroidism:
    normal Tsh

    Celiac disease:
    All tests in blood and stool normal

    System lupus e.:
    Normal ANA levels

    Anemia:
    normal

    Hepatitis B or C:
    not checked, based on lifestyle

    Coxsackievirus:
    Not checked, no access

    Epstein Barr Virus:
    EBV-VCA-IgG: 449 (<20) U/ml
    EBV-EBNA1-IgG: 379 (<5) U/ml
    EBV-VCA-IgM: <10 (<20) U/ml

    HHV-6:
    Not tested

    Cytomegalovirus:
    IgG: 110 (<12) U/ml
    IgM: negative (<18) U/ml

    PB19:
    IgG: >46 (<0.9) Index
    IgM: <0.10 (<0.9) Index

    Chlamydia pneumoniae:
    IgG: 17 (<10) U/ml
    IgA: 16 (<10) U/ml

    Toxic mold exposure:
    Tested with visual contrast sensitivity test. Positive for factors like mold/parasites etc.; negative on nutrition.

    Intestinal dysbiosis:
    Stool test. Too low levels for some of the major players, but no bad bacteria, etc.

    Leaky gut:
    Negative

    Allergies:
    negative

    Yersinia (I dont recall why I tested these, they dont seem to be inside the roadmap):
    IgG: 11 (<10) U/ml
    IgA: <10 (<10) U/ml
     
    erin and Moof like this.
  2. Markus83

    Markus83

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    From where do you come from and which lab performed the tests? I'm asking because there are some "lyme specialty labs" which produce very likely many false positives. If you got tested in a standard lab, it's likely that you have chronic Lyme disease, especially if the symptoms match to Lyme disease. You are also weakly IgA positive for Chlamydia pneumoniae, which might also be a problem. In case of EBV you need also check for EA-IgG which is a marker for chronic activity or reactivation.
     
  3. Aurelius

    Aurelius

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    Thank you for your kind reply. I am reading through the forum right now, and yes, I came upon the labs that you mentioned (Arminlabs was it?).

    However, personally I have a local lab here in the city. I just go there directly, they draw the blood etc. I dont know why other labs should want to produce false positives (do they sell the "treatment" too?), but I doubt that this would be the case here. They are more surprised of having a private patient in their halls.

    My question would be how to differentiate between high Igg levels because immunity (due to a past infection) and ones due to a chronic disease. Hips Roadmap mentions the appropriate titers, but because my lab results show U/ml, I dont know what to make of it and sadly Google dont deliver any results. Do you have an idea?
     
  4. Markus83

    Markus83

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    It's not possible for Lyme disease, although the high titre and the different bands in the western blot would make a chronic infection more likely than just immunity in my opinion, especially if you haven't got a treatment yet and you have symptoms which match with LD.

    Concerning the other infections you should use the tests which Hip recommended in his roadmap, that's the problem, because there is no possibility to convert U/ml to a titre concentration.
     
  5. Hip

    Hip Senior Member

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    This is the issue with viral testing: each lab uses it own measurement system, and there is no way easy to translate from one lab's results to another. I wrote to many of the leading ME/CFS doctors asking them what threshold titer levels they used for diagnosis of a chronic active infection in ME/CFS, but unfortunately I did not get any answers from them.

    The titer levels given in the roadmap for herpesviruses are out of date, because the labs detailed in the roadmap have now changed their measurement systems.

    The only precise info we do have is from Dr Chia, who has stated the threshold titer levels he uses for diagnosis of enterovirus in the ARUP Lab tests.


    The best you can do is look at your test results page, because sometimes the lab will state that you have high titers. You can also look to see how high your titers are compared to the reference range provided by the lab.

    Nothing looks very high in your results, though you really need to have your results interpreted by an ME/CFS specialist.



    If you were you tested for Lyme at ArminLabs or IGeneX, note that these labs have a high false positive rate (see here and here). ArminLabs is also very dubious when it comes to their coxsackievirus B testing (see here).
     

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