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Did your ME/CFS start after mononucleosis? What were your Epstein-Barr virus lab test results?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Manuel, Jul 7, 2018.

  1. Manuel

    Manuel

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    This thread is related to the article I uploaded to the forum. I would like to know whether a number of markers that I propose at the end of the article are met.
    It is aimed at people who have had CFS post-Epstein Barr virus infection.

    I therefore propose that we pool these markers in order to be able to classify this sub-group of CFS. I would like each person to put the following:

    - Pathogen causing your CFS: EBV

    - Number of antibodies against EBNA IgG. These antibodies to this latent protein should be elevated due to chronic latent infection, as in multiple sclerosis.

    - Number of activated T-lymphocytes CD3 + HLA-DR +. They should be decreased by the expression deficit of MHC class II molecules.

    - Molecular typing of the HLA system. For example: HLA-DR15 and HLA-DQ6 predispose to developing multiple sclerosis but together with more factors. Depending on the type of HLA it will indicate a greater or lesser genetic susceptibility to have difficulties in controlling this infection. HLA-DR would be the most interesting type of HLA in this case, because DR is a class II MHC molecular type.

    If you have any questions or doubts, ask me by this thread.
    Greetings and thank you very much for your cooperation.
     
    Last edited: Jul 8, 2018
    Sancar likes this.
  2. Learner1

    Learner1 Forum Support Assistant

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    Not sure I'm giving you what you want, but these are what I have...

    Pathogen causing your CFS: EBV, CMV, HHV6, HSV2, Zoster, chlamydia pneumoniae, mycoplasma pneumoniae

    - Number of antibodies against EBNA.
    Zero (repeatedly) but I had a positive PCR and high VCA IgG.

    - Number of activated T-lymphocytes CD3 + DR +.

    Absolute CD 3. 815. 622 - 2402 /uL
    Absolute CD 3. 1.397 thou/ul. 1.04-3.4 thou/ul


    - Molecular typing of the HLA system.
    Positive for HLA DQ2
     
  3. wastwater

    wastwater Senior Member

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    Mine was EBV acute onset
    Monospot positive
    And many atypical mononuclear cells seen
    Lasted about a week thought it was just tonsillitis at first so pushed through
    Caught in the normal manner ie kissing at normal time late teens
    It feels like some part of the reaction to EBV never went away 23 years on
    Thats all the testing I had for it and I have a genetic disorder involving most likely a cluster of genes but I'm waiting for results on that
     
    Last edited: Jul 9, 2018
  4. Nine lives

    Nine lives

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    - Pathogen causing your CFS: EBV, Chlym. pneumonia, mycoplasma, HSV1 but not tested for all culprits.

    Surprised with viral component as 1st time down I was floxed (flouroquiolones) and thyroid affected. Second time mold. But, they reckon an underlying viral component now. Better with mold protocol and removal of 3 root canals and several cavitations. Still cannot exercise aerobically without PEM.

    - Number of antibodies against EBNA IgG. 19.3 (0-8.9)

    - Number of activated T-lymphocytes CD3 + DR +. Never tested.

    - Molecular typing of the HLA system. Only done mold specific testing for the Shoemaker protocol making me a 4-3-53 and 13-6-52A.

    Specifically,
    HLA DRB1*04 HLA DRB1*13
    DBQ1*03 DQB1*06

    Hope this helps.
     
    Notjustfatigue and Manuel like this.
  5. Forçe e Honra

    Forçe e Honra Senior Member

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    My EBNA IgG is: 119
    I do not know for sure what caused my ME/CFS although my PCP at the time thought it was CMV that did not resolve. But I was not IGM pos only IgG. I was very ill for maybe 9 months (although at the same time battling constant strep throat and tonsilitis, having antibiotics every month after positive strep tests - which resulted in me having my tonsils removed in Jan 2016. It seemed my ME/CFS had gone away a bit before that. But after a long recovery from the tonsilitis - over 3 months - my asthma started to act up very badly and by the middle of 2016 I was very ill with repeat lung infections, antibiotics and steroids for the entire rest of the year. With a new antibiotic in Dec 2016, my lungs finally started to clear up. But then in January 2017, my ME/CFS started to reappear along with POTS (which I never had before and did not even know what it was), MCAS and other issues.

    I have been battling and finally won EBV viremia despite having been on Valtrex for months, when my specialist was able to get Valcyte approved (and after adding Famvir to the Valtrex for about 6 weeks while waiting for approval) - after taking it a couple of months it resolved the viremia and IGM.

    I also have been until recently IGM pos for VZV with the IgG still over 3,500...what else, very high CMV, Paro19 (?), HH6, and more.
     
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  6. Manuel

    Manuel

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    Hi, @wastwater
    Thank you very much for answering and collaborating. You have some of the markers I've been talking about, like antibodies to EBNA. The genetic tests you're talking about are to look at the HLA system?
     
  7. Manuel

    Manuel

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    Hi @Nine lives

    Thank you very much for your help.
    I have a question about this.

    You mean your results are HLA-DRB1*04:13 and HLA-DQB1*03:06?
     
  8. Nine lives

    Nine lives

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    My blood test report shows them separately. But possibly - I am no expert.

    For DQB1 report shows Allele 1 as 03 and allele 2 as 06. All the results from Labcorp test can be put into mold risk calculator such as this:http://www.myhousemakesmesick.com/hlacalc/ which helped me get the 4-3-53 etc.
     
    Notjustfatigue likes this.
  9. wastwater

    wastwater Senior Member

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    I'm just waiting for results of a whole genome scan
    It will probably show deletions of a cluster of genes on the short arm of chromosome 6 as i have riegers syndrome likely FOXC1
    This location is close to HLA
    I'm not sure what if anything the genome scan will show about HLA
    My location probarbly still involves B and T cells and other stuff
     
    Last edited: Jul 10, 2018

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