Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Positive EBV Antibodies Question

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Galixie, Aug 12, 2018.

  1. Galixie

    Galixie

    Messages:
    96
    Likes:
    207
    I was trying to explain to someone that my EBV antibody results indicate something although I'm not sure whether the something is an autoimmune problem or a chronic viral infection. (I lean towards the former because antivirals did nothing for me, but I really don't know for sure.)

    Anyway the conversation got me thinking about my antibody levels. I was tested 4 times in 2015 for:
    VCA IGG
    VCA IGM
    EA IGG
    NA IGG

    All of them came back positive (EA came back equivocal on the 2nd test but positive on the other 3).

    All of those antibodies were tested again in 2017 and all 4 came back positive again at that time. Two additional tests were run at the same time:
    LOG 10 EBV DNA QNT
    EBV BY PCR, QUANT
    Both of the last two tests came back negative, so there is no detectable virus in my blood.

    The thing that, apparently, is odd is that the VCA IGM never dropped back to normal/negative.

    So I'm wondering if it's truly strange that I perpetually test positive for all 4 antibodies? (The virologist thought that could only happen if I were being repeatedly re-exposed, which has not been happening.)

    When I looked at lab tests online, I notice that none of their example results show all positive. Could this be a slightly more solid indication of an autoimmune issue since it is not a typical viral infection set of results?
     
    ljimbo423 likes this.
  2. Ema

    Ema Senior Member

    Messages:
    4,674
    Likes:
    6,796
    Midwest USA
    If you look at Table 1 here, it shows all positives and classifies it as a reactivated/recovery pattern.
     
  3. Galixie

    Galixie

    Messages:
    96
    Likes:
    207
    I'll have to take your word for it because I can't get that table to come up on my phone (it cuts off at row 7). But if it were a reactivation, the antivirals should have made a difference, right? If it was recovery, it shouldn't have all stayed positive when tested 2 years later.

    The fact that they are all positive for years is what struck the hematologist as odd. The perpetually high VCA IGM had the virologist scratching his head.

    I realize the hematologist I went to is no expert on EBV, but I would think that the virologist he consulted could be counted on to know when a result seems strange. I got the impression that the virologist found my rseults a little strange.
     
  4. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    You know that it normally takes a year or two for the full benefits of antivirals such as Valtrex or Valcyte to appear in herpesvirus ME/CFS? This is what Lerner found in his studies.

    Were you tested for enteroviruses, by the way? These are also linked to ME/CFS.
     
  5. Galixie

    Galixie

    Messages:
    96
    Likes:
    207
    I don't know if I was tested for enteroviruses. Which ones are those? I know I was tested for EBV and CMV but only the EBV tests came back positive.

    It may take two years to fully work, but some difference, if it were having an effect, would have been noticeable in the time I took it. It really made no difference at all. My antibody levels didn't change while I was taking it.
     
  6. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    Coxsackievirus B and echovirus. Only the tests at ARUP Lab are valid.
     
  7. Galixie

    Galixie

    Messages:
    96
    Likes:
    207
    How would testing for those viruses relate to the antibodies my system is already making for EBV? Are you thinking it's more likely to be autoimmune if my body is making high antibodies for multiple viruses at once?
     
  8. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    Viral testing in ME/CFS is a complex and uncertain subject. I put some details in my roadmap document. Basically if you have high antibody titers, much higher than the titers found in the general population, then that suggests you may have an ongoing infection with one or more viruses.
     
  9. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,102
    Likes:
    2,063
    United States, New Hampshire
    This is a quote from one of the leading ME/CFS researchers, Robert Naviaux about high viral or bacterial titers in ME/CFS. He is a very well established virologist of 25-30 years-

    LINK

    What he is saying is that in most cases the high viral or bacterial titers are caused by the immune system dysfunction seen in ME/CFS, not viral or bacterial reactivation. Unless they are shown to be high by PCR testing.
     
  10. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    Naviaux's opinions are all very well, but they don't lead to any treatment. Whereas most of the ME/CFS specialist doctors, who test for and treat viral infections in ME/CFS, are often able to make improvements in a patient's health as a result of this antiviral treatment.
     
    Last edited: Aug 20, 2018 at 2:14 PM
    edawg81 likes this.
  11. edawg81

    edawg81 Senior Member

    Messages:
    118
    Likes:
    310
    Upstate, NY
    Dr Lerner, in one of his published papers (can find if you need), noted most MECFS patients are IGG positive while IGM/PCR negative. So this is a fairly common finding in MECFS.

    Depending on what dr/researcher you talk have different interpretations, you will either get an answer that the virus is somewhere where blood PCR testing is ineffective (maybe in the nervous system or the brain tissue?) or the virus is gone and leaves in the wake a dysfunctional immune system (possibly auto immune) producing high levels of antibodies. There is no clear consensus yet at so why these results are so common and the underlying pathology in MECFS.

    I myself have high IGG to EBV and am PCR negative so similar to your results. But I am still trying antivirals for treatment with limited success.

    While a conservative doctor will use the lack of PCR as evidence not to prescribe antivirals a Dr following Dr Learner's/Stanford protocol (and a majority of ME drs) will treat with higher dose antivirals. Some people without positive PCR test results have responded to antivirals while others it seems to exacerbate their condition.

    If you want to look for auto immune issues I would consider looking at APS, ANA, Sjögren antibodies ect ect...
     
    Hip likes this.
  12. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,102
    Likes:
    2,063
    United States, New Hampshire
    That depends on what you think is causing the immune system dysfunction in ME/CFS that he thinks is causing the high titers found in ME/CFS.

    If you think it's the gut like at least 3 leading ME/CFS researchers do, there is a lot that can be done. I know this because I am doing it with great results, that only get better with time.
     
  13. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    I am not sure how Naviaux's views that viruses are not the cause of ME/CFS equates to ME/CFS having a gut etiology. Naviaux is looking into the cell danger response as the possible cause of ME/CFS; he is not really focused on the microbiome.

    But if you want to talk about the gut, can you link to any studies that have shown gut treatments improve ME/CFS?

    I do not know of any ME/CFS specialist doctors who treat ME/CFS via the gut bacteria, except for KDM, who just nukes all his patients with high dose antibiotics, but does not seem to get any results from it. There is nothing he has published that suggests he get results, anyway.

    Microbiome research is fashionable and trendy in science at the moment, so it is easier to get funding for microbiome studies, and that's why some researchers are jumping on the microbiome gravy train. However, good researchers follow an idea not because they want to get on the funding gravy train, but because they think their idea may lead to the truth.



    In any case, theories are all very well, but patients want treatments that have a track record of working. Antiviral treatments have that track record to some extent, but there's not much in the published literature that shows gut treatments help.
     
  14. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,102
    Likes:
    2,063
    United States, New Hampshire
    I said that he thinks it's the immune system dysfunction causing the high viral or bacterial titers. My view, like the 3 ME/CFS researchers, is that it's the gut causing the immune system dysfunction.

    If it is, one can intervene and make significant changes to protect the mitochondria from the toxins from the gut, heal the gut and re-balance the microbiota.

    Therefore allowing the immune system to normalize. I have links to 6 studies that all show high levels of lipopolysacharides (LPS) in ME/CFS. LPS are well known to cause immune system activation, even at very tiny doses.

    Exactly!! I think ME/CFS specialist are often treating viruses that aren't there, because of high titers. Instead of core issues, like the gut and mitochondrial dysfunction.

    Why would researchers want funding to research something they don't believe in? It sounds like a waste of their time. That don't make sense to me.

    Chris Armstrong, Ian Lipkin have spent years studying the microbiome. So it's something they obviously think is a core issue in ME/CFS.
     
  15. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    When I said I don't know of any of the specialist ME/CFS doctors that treat the gut, what I meant was, since the leading ME/CFS doctors are pretty much on the ball about what works and what does not, they fact that they don't focus on the gut suggests this type of treatment is not effective.

    A few ME/CFS patients have anecdotally improved from probiotics (with others being made worse by probiotics); but published evidence for gut interventions helping is just not there.



    Possibly because they have no good ideas of their own, so they like to jump on the trendy microbiome bandwagon. That's why I am a bit skeptical of the microbiome research field, simply because it is fashionable.



    Enterovirus is very much there in ME/CFS. There are high titers, but you can also find enterovirus RNA and viral protein in the muscle, gut and brain tissues of patients. Thus it is clear that in this case, the high titers reflect the demonstrable infections in the tissues.

    The main problem with enterovirus is that there are no good antivirals available.
     
  16. knackers323

    knackers323 Senior Member

    Messages:
    1,396
    Likes:
    423
    @ljimbo423 what treatments are working for you and how much have you improved?
     
    ljimbo423 likes this.
  17. Galixie

    Galixie

    Messages:
    96
    Likes:
    207
    Which is another reason why I prefer to think it isn't viral. I mean the lack of treatments in general is depressing, but at least some forward movement seems to be happening in the autoimmune research realm. If what I have is an immune system dysfunction and not an active virus, which is what I understand to be the case with me, then I can at least hope that a treatment will be stumbled upon in the near future.

    I don't know what is happening, if anything, in the research and treatment of enteroviruses. I assume it's about the same as with EBV, which appears to be nothing much.
     
    ljimbo423 likes this.
  18. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    A few treatments are available for enterovirus: oxymatrine, Epivir and tenofovir. For herpesvirus ME/CFS (linked to EBV, HHV-6 or cytomegalovirus), good antivirals are available in the form of Valtrex, Valcyte and others.



    Which autoimmune research are you referring to? The recent rituximab phase III clinical trial, which was based on the assumption that ME/CFS is autoimmune, unfortunately failed to show any benefit for ME/CFS, so this was a big blow for the autoimmune hypothesis.

    There are new studies showing that the POTS condition that many ME/CFS patients have may be autoimmune, due to autoantibodies targeting the autonomic nerves.
     
  19. Galixie

    Galixie

    Messages:
    96
    Likes:
    207
    I was on Acyclovir and it didn't do anything for me. I really don't think antivirals are the answer for me.
     
    ljimbo423 likes this.
  20. Hip

    Hip Senior Member

    Messages:
    10,842
    Likes:
    18,014
    What dose did you take, how long were you taking it?

    It normally takes a year or two for the full benefits to manifest. See Dr Martin Lerner's and Prof Jose Montoya's Antiviral Protocols for Herpesvirus-Associated ME/CFS.


    Also, were your EBV antibody titers elevated? Being positive for EBV by antibody titers is not the same as elevated titers; it's the latter that suggests active infection to ME/CFS doctors. If you were just positive but not elevated, that suggests just past infection with EBV.

    Also, if you have high titers to coxsackievirus B and echovirus, then those may be the cause of your ME/CFS.
     
    Last edited: Aug 21, 2018 at 8:25 PM

See more popular forum discussions.

Share This Page