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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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EBV in ME/CFS: Four Part Series

Discussion in 'Latest ME/CFS Research' started by Cort, Dec 2, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    This was put up on the Phoenix Rising Website recently

    EBV was the first major disappointment for CFS researchers. Several studies in late eighties suggested EBV might be the cause of CFS but subsequent studies revealed EBV activation to be no higher in CFS than controls. In recent years, however, like Lazarus rising from the grave, EBVs role in CFS has been given new life by several research groups that have continued to examined this intriguing virus in greater detail.

    Check out the four part series on EBV and ME/CFS from Phoenix Rising.

     
  2. cfs since 1998

    cfs since 1998 *****

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    Interesting series, Cort. I have a comment on this from part 2 (about rituximab):

    Note that they also discussed another hypothesis, "ongoing infection with a B-lymphotropic virus". Presumably this could be EBV, or XMRV, or both. Dr. Timothy Lucketts wrote on his blog that, even though XMRV infects both B and T cells, eradicating XMRV-infected B cells could give the patient's immune system a leg up on the situation, at least until the new B cells become infected again.
     
  3. starryeyes

    starryeyes Senior Member

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    That part about "until the B cells become infected again...."

    I remember hearing about a woman with CFS who lost a lot of blood because her stomach ruptured or something from too much aspirin and she received a blood transfusion at the hospital and she felt better for about 2 weeks and then her symptoms returned.

    Cort, your articles are amazing! You do us all a great service writing such well-researched and informative information. What is the date of these articles? I can't find that anywhere, if it's there can you tell me where?

    I always thought there was much more to EBV in CFS. I was first Dx with chronic EBV in 1985. I am really hoping my brainfog clears up more soon so I can actually comprehend all these articles and the other information about the CAA that you gave me. I'm looking forward to more discussion here about the EBV articles.
     
  4. CBS

    CBS Senior Member

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    Thanks

    Cort,

    Thanks for the reference to the series. I am seeing Dr. Montoya and while I have not had a chance to go over all of my recent test results, I do know that in addition to other viral infections, I have elevated EBV IgG levels. He's started me on Acyclovir for an active/chronic HSV-1 infection but this article suggests that it might also be useful to lower EBV levels. This is also encouraging as I have had significant cardiovascular issues over the last 18 months. Great post!
     
  5. PoetInSF

    PoetInSF Senior Member

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    This is not proven by any means. The best you can say is that IM *may* be a risk factor, as http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2756827/ states. Other infections are also suspected to trigger CFS, and this paper did not compare the post-IM incidence rate with other infections. Most of the cases resolved eventually anyway.

    This borders religion. If it is undetected, how do you know it is undetected? You could as well say unseen spirit causes CFS.
     
  6. kolowesi

    kolowesi Senior Member

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    smoldering infections

    I can't find info on the EBV test Dr. Lerner uses, but I remember the HCMV test looked for antibodies to early gene products. I think he uses an Italian test for EBV early gene products.

    If a virus is making proteins but not completely replicating, you could have an infection that is not shown by ordinary antibody testing. The EBNA doesn't work because the infection moves inside the cells, so the antibodies to viral nuclear antigen subside.

    It's "undetected" because the common testing is not looking for smoldering infection.

    I've only begun to read Cort's work, so maybe he says this somewhere.

    Mononucleosis can be caused by both EBV and CMV, FWIW.

    Kelly
     
  7. Cort

    Cort Phoenix Rising Founder

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    Thanks CFS since 1998 - I amended that passage to include that.

    Hi Poet - I agree I missed something there: I altered it to

    • Rates of active EBV infection are not higher in chronic fatigue syndrome (ME/CFS) patients than the population at large: EBV infection does not play a role in this disease.
    • EBV infection during adolescence/adulthood that leads to infectious mononucleosis is a risk factor for ME/ CFS.
    • An ongoing chronic and mostly undetected EBV infection by itself or in interaction with other viruses causes significant symptoms in a subset of patients.

    Note that I said, though, that I said these are 'ideas' in the line before - not fact.

    Thanks for the comments - they were very helpful
     
  8. jackie

    jackie Senior Member

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    Hi Come Back Shane! I just noticed your post re: Dr. Montoya and that you had started Acyclovir.

    I've been trying to find someone besides myself taking this....and now I've found you! Valcyte is common - Acyclovir...not so much, it seems.:confused:

    Can I ask how you're doing on it?...and what dosage, length of time... any anecdotes on how you are feeling? (if you feel like sharing this info...if not - I understand!)

    I'm just curious for anothers insight. I've been on 3200mg. for over 3.5 years. (high EBV, chronic Enteroviruses, chronic Shingles)

    jackie:) back to bed;)

    (BTW am I on-topic here? if not - it will be the second time today that I am - NOT!?)
     
  9. PoetInSF

    PoetInSF Senior Member

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    OK, Cort, I missed that. I mistook those as a priori that Glaser, Learner, et al was basing their new research on.
     
  10. Cort

    Cort Phoenix Rising Founder

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    Thanks Teejkay - Most of the articles were done quite some time ago but I tried to bring them up to date. I just posted them recently. I'll put a date on them.
     
  11. starryeyes

    starryeyes Senior Member

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    Thanks Cort, I appreciate that. :)

    I was also wondering if you can make it so that the font in your articles is able to be enlarged a lot without going off the page like this forum lets you do. It's hard for me to read smaller print because of CFS even though my eyesight is still good.

    tee
     
  12. Kati

    Kati Patient in training

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    I ageee Teejkay, the small font and not much spacing is a deterrent to reading, I had to give up, too overwhelmind for my smashed brain cells.
     
  13. _Kim_

    _Kim_ Guest

    Ditto

    I tried to read it earlier today in preparation for my doctor's visit tomorrow. I was looking for a reference value for my EBV results. I wanted to know how high is a high EBV VCA AB IgG?
    Mine is 4.19 (ref. range <= .90). I couldn't skim the text and got bug-eyed trying. I gave up.
     
  14. Khalyal

    Khalyal Guest

    Small font

    This may help a bit... to enlarge the text, hit the control button and the + button on your computer at the same time. To reduce, hit control and -
     
  15. _Kim_

    _Kim_ Guest

    Khaly, thanks for the reminder about enlarging the text. I tried it, and it does make the text larger, but then the text doesn't fit horizontally on the screen and I have to scroll left/right to read each line. Might only be a problem on a smaller screen, like the laptop I'm using.
     
  16. Cort

    Cort Phoenix Rising Founder

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    I've wondered if its too small. I hope to make it so that you can adjust the font size easily - I have to learn how to do that. Thanks for the feedback.
     
  17. gracenote

    gracenote All shall be well . . .

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    copy and paste

    I sometimes copy and paste an article to Word or some other word processing program and then enlarge the font, change the font, add spacing, or whatever I need. Sometimes it is also helpful to then print it out so I can underline what I want to remember.
     
  18. txfriend

    txfriend

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    Hi Kim...and Khaly

    :(


    No, it's not because it's a laptop, Kim. My PC has a computer/tv
    monitor, and it's 27" and I have to scroll left and right on so many
    pages, it makes my dizziness even worse. I've tried Khaly's advice
    using the 'control and +', but that doesn't help at all; it it still all off
    the right side of the pages I read, here and everywhere else.
    Makes learning and advocacy that much harder, doesn't it?

    Back to the topic: of the three of us here with CFS, two have
    tested positive with high EBV titers. So, does that mean the
    third person may have a 'smoldering' EBV, or maybe other
    viruses that are activated by something else?
     
  19. cfs since 1998

    cfs since 1998 *****

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    Don't forget CMV causes symptoms almost identical to EBV even in "regular people". And other herpes viruses have been implicated in CFS.

    I know my condition started with an acute EBV infection but after about a year my doctor said my antibodies had normalized -- although there is debate about what normal is. I should probably have them rechecked.
     
  20. Cort

    Cort Phoenix Rising Founder

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