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POLL: For post-vaccination ME/CFS patients: do your tests show active viral infections?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Hip, Feb 4, 2018.

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Vaccination-triggered ME/CFS patients: do you have any chronic active viral infections?

  1. Epstein-Barr virus: I have a chronic active infection

    25.0%
  2. Epstein-Barr virus: My results show an inactive infection

    25.0%
  3. Epstein-Barr virus: I have not been tested for this virus

    0 vote(s)
    0.0%
  4. HHV-6: I have a chronic active infection

    0 vote(s)
    0.0%
  5. HHV-6: My results show an inactive infection

    25.0%
  6. HHV-6: I have not been tested for this virus

    0 vote(s)
    0.0%
  7. Cytomegalovirus: I have a chronic active infection

    25.0%
  8. Cytomegalovirus: My results show an inactive infection

    25.0%
  9. Cytomegalovirus: I have not been tested for this virus

    0 vote(s)
    0.0%
  10. Coxsackievirus B: I have a chronic active infection

    0 vote(s)
    0.0%
  11. Coxsackievirus B: My results show an inactive infection

    0 vote(s)
    0.0%
  12. Coxsackievirus B: I have not been tested for this virus

    25.0%
  13. Echovirus: I have a chronic active infection

    0 vote(s)
    0.0%
  14. Echovirus: My results show an inactive infection

    0 vote(s)
    0.0%
  15. Echovirus: I have not been tested for this virus

    25.0%
  16. Enterovirus by stomach biopsy: I have a chronic active infection

    0 vote(s)
    0.0%
  17. Enterovirus by stomach biopsy: My results show an inactive infection

    0 vote(s)
    0.0%
  18. Enterovirus by stomach biopsy: I have not been tested by stomach biopsy

    25.0%
Multiple votes are allowed.
  1. Hip

    Hip Senior Member

    Messages:
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    This poll is only for ME/CFS patients whose illness appeared immediately after vaccination.

    The poll asks whether post-vaccination ME/CFS patients have any chronic active herpesvirus or enterovirus infections, as viral infection-triggered ME/CFS patients often have.

    The purpose of this poll is to see whether vaccine-triggered ME/CFS might involve the same chronic active viral infections that are found in ME/CFS triggered by viral infection.

    To ensure this poll only includes patients whose ME/CFS was clearly triggered by vaccination, in this poll we are looking for patients whose ME/CFS symptoms suddenly appeared within say one week of a vaccination (as opposed to patients whose symptoms appeared months after a vaccination, when it is less certain that the vaccine triggered the ME/CFS).

    So if your ME/CFS suddenly appeared within a week of a vaccination (but not if it appeared months after vaccination), please vote in this poll, and indicate which chronic active infections you have. Please also post some details about your vaccine trigger (which vaccine it was, and how long it took for the ME/CFS symptoms to appear).

    To be diagnosed with a chronic active infection, the following criteria should be satisfied (you need to have certain elevated antibody titers to be diagnosed with a chronic active infection; if your titers are lower than the titer thresholds give below, please vote for an inactive infection):


    Epstein-Barr virus:
    Elevated antibodies in the EBV IgM VCA test and/or the EBV EA diffuse test by ELISA indicate active EBV infection, says Dr Lerner.

    Alternatively, antibody titers of 1:640 or higher in the Quest EBV IgG VCA test and titers 1:160 or higher in the Quest EBV IgG EA test indicate active EBV infection, says Dr Montoya.


    HHV-6:
    Antibody titers of 1:160 or higher in the LabCorp HHV-6 IgM test and the LabCorp HHV-6 IgG test indicate active HHV-6 infection, says Dr Lerner.

    Alternatively, antibody titers of 1:320 or higher in the Quest HHV-6 IgG IFA test indicate active HHV-6 infection, says Dr Montoya.


    Cytomegalovirus:
    Elevated IgG antibody titers for cytomegalovirus indicate an active chronic CMV infection, says Dr Lerner. He says you must test for IgG, not IgM, as the IgM titer is insensitive.


    Coxsackievirus B and echovirus:
    Antibody titers of 1:320 and higher in the ARUP Lab coxsackievirus B and echovirus antibody neutralization blood tests indicate a chronic active infection with these enteroviruses, says Dr Chia. Note that for these viruses, only the ARUP Lab antibody neutralization tests, or a similar antibody test using the neutralization method, are valid. Other methods of antibody testing (such ELISA, IFA or CFT) are not sufficiently sensitive and are not valid tests for ME/CFS purposes.

    If any of your six coxsackievirus B serotypes have titers of 1:320 and higher in the ARUP Lab tests, please vote for an active infection for coxsackievirus B. Likewise for echovirus. If they were all lower than 1:320, please vote for an inactive infection. If you were tested for coxsackievirus B or echovirus by any lab other than ARUP, Cambridge Biomedical, then please vote for "I have not been tested for this virus". It is only the neutralization test offered by these labs that is valid for testing in ME/CFS.

    Alternatively, a positive result in a stomach biopsy test, when the biopsy tissues are sent for testing to Dr Chia's lab, indicates a chronic active enterovirus infection.
     
    Last edited: Feb 5, 2018
    Aroa, ebethc and pattismith like this.
  2. impossible

    impossible

    Messages:
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    Mine was triggered like a light switch hours after a dpt shot and ive had elevated cmv titers consistently since then. Came down with lyme some years later which only made it all dramatically worse.

    Also turns out I have mcas and likely have had it to some degree my entire life. My mother said i reacted horrifically to my infant vaccines to the point that she stopped them and my health history as an infant and toddler was pretty scary.I wish I would've known that as an adult before it was too late.
     
    cigana likes this.
  3. Hip

    Hip Senior Member

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    Thanks @impossible, that's very interesting.

    The motivation behind this poll is to see if vaccine-triggered ME/CFS patients generally have chronic active herpesvirus or enterovirus infections, because if they do, it suggests that the etiology of vaccine-triggered ME/CFS may not be much different from regular ME/CFS triggered by infection.

    I am thinking that the vaccine might somehow cause the reactivation of existing herpesvirus or enterovirus infections in the body, and once reactivated, these remain as chronic active infections, as you find in regular ME/CFS.

    So that would mean that in vaccine-triggered ME/CFS, it may still be the infections that are the cause of the illness.

    And as a corollary to that, it would mean that vaccine-triggered ME/CFS patients may benefit from the same antivirals and immunomodulators used by regular ME/CFS patients to treat their chronic active infections.
     
    pibee likes this.
  4. impossible

    impossible

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    I'll give that some credence. I'm in the camp that believes that theres a lot of, too much, mast cell activity driving the whole process, most likely along with some sort of autoimmune component in most (also quite possibly caused or driven by mast cell hyperactivity). Theres a lot of things that can fuel that fire once that process is in play. Its pretty well known that inflammation activates those virus's, so it's another one of those viscous circles keeping the party going. Gotta do whatever you can to take the load off the immune system.

    Also, its been shown that a lot of the antimicrobial medications used have the added benefit of calming down mast and microglial cells in one way or another.

    And who knows, one could argue, quite strongly, that some sort of genetic or epigenetic change has occured due to a known or possibly unknown virus that is screwing with a molecular process, constituitively activating some kinase or downregulating some regulatory protein, making the immune system constuitively activated or hypersensitive. Would explain all the outbreaks. Thats kinda what i'm putting my money on these days.
     
    Last edited: Feb 5, 2018
  5. impossible

    impossible

    Messages:
    53
    Likes:
    44
    I'll add to what i said above that a recent study has shown that sustained stat3 activation in human mast cells causes hypermethylation of socs3 promoter genes, thus downregulating socs3 which pretty much makes the whole mast cell hypersensitive and hyper reactive. They can only handle so much before they go into crazy mode, in a way they then arent capable of rescuing themselves from if theres anything going on to keep them stimulated.

    A vaccine is plenty capable of delivering quite an immune load, and has been shown in studies to pretty much knock out a lot of process's that the body needs to keep things in tune and under control (like the methylation cycle, mb12 levels, nrf2, etc), so is quite capable of kicking the immune system, and mast cells in particular, into that process, if not also causing an autoimmune process possibly via a few different ways.
     
    Last edited: Feb 5, 2018

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