1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Discuss EBV and possible chronic EBV

Discussion in 'General ME/CFS Discussion' started by heapsreal, Aug 20, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,521
    australia (brisbane)
    I just wanted to discuss this as it was brought up in another thread and i thought it was interesting.
    This info is from wikipedia but its just the basics. Half of all 5 y/o children in the USA carry ebv and 90-95% of adults carry ebv. Ebv causes mono in teenages 35-50% of the time. Im guessing other viruses like cmv cause mono the other viruses that cause mono. EBV infects b-cells.

    The name chronic ebv was brought up for a name of cfs, my opinion was that it probably wasnt that far off. It possibly could be a triggering virus in cfs/me and then it might not be but it could be reactivated later on and cause issues. Most cfsers have low nk function, these nk cells help protect us from viruses and reactivated viruses, so having a low nk function can make us prone to ebv reactivation. They are also finding that ebv causes issues with b-cells in cfs which could how rituximab works???

    Myself as an example, i tested positive to ebv after a case of mono which was one of the viruses i had that triggered cfs for me. Several years later i tested totally negative to ebv. Generally when one gets ebv they produce igg antibodies that one then produces for life through the b cells and suppose to protect us from further infections, suppose to. Now what i found when i read Oslers web was that many from the outbreaks in the 1980s of cfs initially tested positive to ebv with igg life long antibodies but then some years later lost these life long antibodies for some reason, not everyone but a significant group did. I thought maybe this was what happened to me.

    This is all my reasoning but if someone with cfs/me tests totally negative to ebv then they are either in that 5-10% of adults who never got ebv or more likely were similar to the cfsers who stopped making ebv igg antibodies. This doesnt mean they dont have the virus but more so that there immune system/ b cells arent producing antibodies to protect them from ebv. Now if one has low nk function and other indications of immune supression like most cfs/me people then ebv and other viruses are going to be more prone to ebv reactivating.

    Why doesnt everyone improve when treating ebv with antivirals?? Dr Petersons research shows a high percentage also have cmv and hhv6 and or have bacterial co-infections that would mask any improvement made from lowering of ebv, although some people do notice some improvement as it would take a load off the immune system.

    Im posting this more as a debate and to show that with the research they had in the 1980s that chronic ebv probably wasnt far off the mark and alot better name then cfs. ebv reactivation commonly occurrs in immune supressed people with HIV or organ transplant patients on immunosupressive therapy, so i think this also shows the cfs/me has a significant amount of immunosupression going on. Even if someones cfs trigger was a vaccine, this lowering of immunity could make one more prone to having these viruses like ebv reactivate. I just think it shouldnt be something overlooked.

    Look forward to hearing others opinions on this as well as from other people who have tested positive to ebv and think they also have lost antibodies to ebv or other viruses.

    cheers!!
    Rlman, overtrain, Ruthie24 and 2 others like this.
  2. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    448
    Likes:
    229
    West Coast USA
    My EBV early AG (R+D) IgG is at 1:320, considered somewhat high by Kogelnik, and my B cells are 94, which is considered low when the reference range is 110-660 cells/uL. My EBV EBNA AB IgG is 3.41.

    A lot of what you posted above was news to me, I see I still have a lot to learn, for instance about the EBV and B cell involvement. Fascinating about going to zero long term antibodies but still being sick. Is that a sign of the body just throwing in the towel vis a vis the one virus, or that it was ensconced the immune system cold no longer tell it was an enemy?

    NK cells are 275 with reference range of 70-760, but their function was 14, where normal should be 60-100.

    Don't know how this stacks up against other people's numbers. I also have HHV6 (1:80) and CMV involvement (3.91)

    Interestingly, I thought I had HSV due to a lifetime of mouth sores, and many during my collapse last year, but HSV I and 2 are ok for me. Kogelnik said HHV6 can also cause mouth sores.

    I haven't tried any particular western medical intervention for any of this yet, still learning here what the options are. Thought GcMAF looked promising then read two blogs where gals had IRIS with it.
    merylg likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,521
    australia (brisbane)
    I think there is also issues with accuracy of testing or viruses move from blood and into cells and nerves etc so cant be detected by blood or as dr lerner has mentioned, viral particles???
    merylg, overtrain and Sparrowhawk like this.
  4. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,277
    USA
    I suspect that immune dysfunction -- particularly of the types that make us more susceptible to intracellular pathogens -- is at the root of our illness..... maybe not the original cause, but the reason for the majority of our symptoms. Something -- the real cause -- gave us the immune dysfunction. That might be a pathogen (or a variety of pathogens), or something genetic, or an environmental trigger such as organophosphate pesticides or mold.

    Immune dysfunction leaves us susceptible to any number of pathogens, so a variety of symptoms shouldn't be surprising. I agree, though, that reactivation and chronic active infection with viruses like EBV, HHV-6, CMV, and probably enteroviruses may be what's making us sick. They can cause the kind of symptoms we have.

    Another possibility is that a chronic infection can impair or disorder the immune system just by keeping it always turned on. The people who died in the 1918 Flu Pandemic didn't die from the flu, exactly. They died from the cytokine storm the immune system put out in response to the virus. That's why the young and healthy died in larger numbers than infants or the old and infirm. Their healthy immune systems responded too strongly.

    If one part of our immune systems is always in "on" mode to fight a chronic or continuously reactivating EBV (or other) infection, that could mess up other parts of our immune system, which is supposed to maintain a kind of balance. Maybe chronic EBV wears down the part of the immune system trying to fight it, while other parts of the immune system are working overtime trying to adjust.

    I suspect EBV (or something very similar, maybe still unidentified) will turn out to be a major player in ME/CFS. (I haven't read the research that determined it wasn't the "reason" for ME/CFS, so I may be talking nonsense at this point.)

    As I understand it, the research determined that some people with ME/CFS showed no long-term (IgG?) antibodies to EBV, meaning they never had it, so it couldn't be a cause of ME/CFS. One question I have is whether they checked to see if those people were even capable of producing the appropriate antibodies. Somehow I doubt they did. The assumption was probably that everyone had an intact immune system capable of producing the necessary antibodies. Not an entirely valid assumption for PWME, as it turns out.

    Another question is about the conclusion they drew. Did they conclude that EBV was not the cause, or that it was not a significant factor? As we've learned from HIV/AIDS, the worst symptoms don't have to be a direct effect of the original cause if immune dysfunction is a factor. The symptoms can be the result of the secondary infections. Many/most/all of us could be suffering from chronic EBV (or CMV, or HHV-6, or HSV, or enteroviruses or...), even if it isn't the original cause. To suggest it isn't important to the illness and it's progress because it's unlikely to be be the cause would be pretty short-sighted.

    I think if we're going to look at EBV as a major player in ME/CFS, it makes sense to ask why 90+% of the population keeps EBV (CMV, HHV-6) latent and we can't. When we know that, we might be closer to finding the cause of our illness.

    Treatment is another matter. If we have chronic infections, or are susceptible to repeated infections, treating effectively could vastly improve our quality of life. It could also slow the progress of the illness by minimizing the damage done by the infections. As Dr Klimas once pointed out, HIV patients are out there working and living their lives because their treatment is minimizing the secondary infections, not because they're cured. We are stuck being sick and disabled because we can't get timely, effective treatment.

    So far, I've been treated for chronic HHV-6, chronic EBV, chronic Chlamydophila pneumoniae, Parvo B-19, and Coxsackie. Each treatment made me feel noticeably better. Were any of those infections the cause of my ME/CFS? Who knows? I certainly don't think they've legitimately ruled out any of the herpesvirus infections. Of them, EBV seems a likely culprit for many of our problems, although CMV and HHV-6 are also candidate.

    Ultimately, though, I think the real root may lie elsewhere -- in the reason we can't keep these viruses latent.
    Rlman, wastwater, merylg and 3 others like this.
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,277
    USA
    It has been demonstrated that some of us cannot make (or can no longer make) the necessary antibodies in sufficient amounts or for long enough. heapsreal testing positive for antibodies, then negative, then positive again suggests he might be one of those people. Maybe he produces some antibodies during an acute infection, but his body doesn't keep making them.

    Another issue with chronic infections and the immune system is immune exhaustion. I have low CD8+ cytotoxic T-cells and other immune abnormalities that indicate that my immune system had been fighting chronic infections so long it can no longer put up an effective defense.
  6. Sparrowhawk

    Sparrowhawk Senior Member

    Messages:
    448
    Likes:
    229
    West Coast USA
    Right, which is what makes the Chia stuff so interesting and promising to me, finally someone talking about various tissue biopsies. And at least for gut tissue, currently doing them.
    merylg, Antares in NYC and heapsreal like this.
  7. Forbin

    Forbin Forbin

    Messages:
    250
    Likes:
    247
    I came down with “classic” ME in the early-1980’s following a flu, but test results showed I had never been infected with EBV. When I started to hear about Epstein-Barr Virus Syndrome in the mid-1980’s, it certainly sounded like what I had… except for the EBV part.

    The Dubbo study from a few years ago showed that a small number of people develop “CFS” following a variety of different infections. They saw it develop after infection with a DNA virus (EBV), an RNA virus (Ross River virus) and a bacteria (Q Fever -Coxiella burnetii)– and those were just the infections they checked for.

    [My bolding below.]

    SOC, heapsreal and Sparrowhawk like this.
  8. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,277
    USA
    The tests for EBV test for antibodies to the virus, not the virus itself. What your test proved was that you aren't producing IgG antibodies to EBV. The assumption is that you have an immune system that is capable of producing the antibodies, so the lack of antibodies means you haven't been exposed. That is, indeed, the most likely explanation. However, it's possible that the assumption that you have an intact immune system is wrong and you are simply unable to produce the IgG antibodies they are measuring. The negative IgG is not a guarantee that you have never been infected. The most accurate interpretation is that you are not immune to EBV infection -- unlike the majority of the population who have been exposed and are now making long-term antibodies to it.
    merylg, Ruthie24, Sushi and 1 other person like this.
  9. Forbin

    Forbin Forbin

    Messages:
    250
    Likes:
    247
    FWIW, I tested negative to both antibody to VCA-IgM and antibody to viral capsid antigen (VCA) as well as antibodies to cytomegalovirus. I never developed swollen glands, although, about a month after onset, I did briefly develop an odd, measles-like rash of the type which is seen in a few mono patients.

    It does seem kind of odd, though, to imagine that I would be incapable of producing antibodies to mono. As opposed to becoming more susceptible to various infections after getting ME/"CFS,” I didn't catch a cold or flu for over a decade (though I was by no means isolated from the outside world). I've always presumed that my immune system was somehow "turned up too high."
    Sparrowhawk likes this.
  10. SOC

    SOC Moderator and Senior Member

    Messages:
    5,289
    Likes:
    6,277
    USA
    The immune system is way more complicated than on-off, high-low. You can have part not working well enough and another part "turned up too high".

    All that said, the most likely explanation for you not having antibodies to to EBV and CMV is that you've never been infected. It's just not a certainty. You're lucky though, if you got into adulthood without getting either of those ubiquitous infections. Since 95% adults have been infected with EBV and 80% with CMV, your luck must be good for you to have missed both of them. :)
    Sparrowhawk and Ruthie24 like this.
  11. Ruthie24

    Ruthie24 Senior Member

    Messages:
    151
    Likes:
    269
    New Mexico, USA
    In the FWIW category, I don't recall ever having mono or mono symptoms so was very surprised when a mono spot test came back positive at the age of 46. (A red flag for a malfunctioning immune system as Dr. Kogelnik called it). I also found it interesting on my viral panel that although I've had both chicken pox and shingles, I had no antibodies to that virus. So I appreciate your insight SOC about how parts of the immune system can be turned up too high and other parts not high enough. Also an interesting insight @ Heaps that you aren't able to produce antibodies to EBV at times.
  12. Forbin

    Forbin Forbin

    Messages:
    250
    Likes:
    247
    Partially luck and perhaps partially because I was tested at age 22. I've seen values reported of between 80%-95% for people between ages 35 - 40, but I have no idea what the age curve looks like.
    SOC likes this.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,521
    australia (brisbane)
    SOme may have ebv or cmv but have never had mono or it may have been a mild cold/flu and wasnt noticed or diagnosed. Mono mostly only gets picked up and tested after a long bought of illness as in a few weeks and doc sends one off for a test, they also usually test high for lymphocytes at the time which helps confirm the mono diagnosis. So not everyone who has ebv/cmv gets mono aka glandular fever.
  14. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Mono is far more impactful to the system to catch the first time in middle age.... from what I've read. I'm going on two years down.
  15. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Really interesting about the
    Very interesting about the 1918 flu.... on that wiki pg (1918 flu) I found this wild illness:
    http://en.wikipedia.org/wiki/Encephalitis_lethargica
    which talks about brain stem involvement. I've always sensed that is connected to my case of M.E., along w having a hyper immune system, even going years w no colds then wham, Mono the first time at 49.
  16. overtrain

    overtrain Medical Mafia needs to die via this virus.

    Great, needed topic. I didn't know that about about the test result conversion re the 80s cases. I am beginning to wonder if I was one of the rare ones with no antibody to EBV... or it too disappeared.

    The EBV titer test is a MESS, period. At this late date there is still no universal consensus on titer interpretation. If you put several hours into online research, you'll come up with assorted theories by anyone & everyone about what number means what, when active infection is happening, the whole shebang. When I talked to a doctor about the original EBV test, I quickly realized he wasn't even as informed as I was, nor several other doctors. I learned to just stop talking about what I knew. NONE of the doctors were able to interpret my numbers at the very hospital that invented their own EBV numbering system (as a naturopath told me, so no one will question it or be able to interpret it). To this day these numbers sit in a doc on my desktop and I have no clue how to interpret them. I will tell you, because *I* live in my body, I *know* my infection was *active* at the very time a doctor say & told me it *wasn't*. I even had an arm rash they dismissed.

    And as someone said below to the effect, the virus can be hiding or otherwise not accounted for in blood serum. All I know is I coughed so hard I broke a rib when I got a respiratory thing 9/11, then it all went to hell. I got Mono at 49; not a good age. I sure as $%^ don't want to re-get this at 60, 70 or worse. Been sick & mainly housebound 2 years next month. Slowly, emphasis SLOWLY improving, esp. after dealing with MTHFR.

    I don't have $ to get CMV, HHV-6, etc. tests, so no clue there...

    Thank you, Heapsreal.
    Sparrowhawk likes this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,521
    australia (brisbane)
    Overtrain a high total lymphocyte or a high cd8 t cell lymphocyte can Indicate an active ebv or cmv infection too. So more proof for you indicating ebv is an issue for you. Google cd8 lymphocyte and ebv you will get alot of hits.

    Cheers
    overtrain likes this.
  18. overtrain

    overtrain Medical Mafia needs to die via this virus.

    thank you, heapsreal. you're the first person to ever address & validate this for me. 2 years is a long time to wait.
  19. Rlman

    Rlman

    Messages:
    59
    Likes:
    8
    Toronto, Canada
    When I got initially ill with CFS, heterophile antibodies were positive (mono test), but EBV, CMV antibodies all neg (also PCR neg). Docs stumped about that. I've had all infections negative except toxoplasmosis came back IGG positive when tested 2 years later. Turns out heterophile antibodies can be positive for toxo as well. I still think I had mono though. When got ill, lymphocytes normal, but WBC, platelet count and neutrophils were low. The numbers recovered after a few weeks, though hemoglobin has gone up since to borderline high. Can mono cause decreased WBCs? Internet research shows that viral infections can cause temporary low WBC and platelets.

    Question: if immune system to weak to make antibodes to EBV, would that mean it can't make antibodies to any infection? I had antibodies to Toxo and Rubella IGG+, so some part of immune system is working.

    Thanks,
    Ron
    Last edited: Jun 18, 2014
  20. Rlman

    Rlman

    Messages:
    59
    Likes:
    8
    Toronto, Canada

See more popular forum discussions.

Share This Page