The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Active EBV?

Discussion in 'Immunological' started by Anana, Jan 10, 2018.

  1. Anana

    Anana

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    Hello!
    I have posted here before but I am mostly lurking in the shadows. I do have a question for you.

    I had mono in 2010 (lasted about one year) which left me with PEM after intense actibvities and in need of a nap or so a week but that's about it. In January 2017, I became bed bound for about 6 months and I am still inable to work or care for my 3 year old more than 3 days a week.

    To get to the point, my EBV results have been as attached simce June 2016 (doctors hadn't told me, I just discovered after getting results printed).
    ***See lab results in comments as I forgot to post.***
    My questions:
    1) Am I having mono a second time? It feels much worse that the 1st time.
    2) Do I have CFS because of EBV?
    3) Would a specialist help? If yes, which one? (Immunologist, infectious disease?)
    4) My family doctor says I don't have mono and refuses to try an antiviral, such as Famvir. Anyone think it would be helpful?

    I can't get another doctor because I live in rural Ontario, Canada and doctors are pretty scarce.

    Thank you all so much for taking the time to read this. I am sending everyone love and courage.
     

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    Last edited: Jan 10, 2018
  2. Hip

    Hip Senior Member

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    ME/CFS is linked to active infections with certain herpesviruses (namely EBV, HHV-6 and cytomegalovirus) as well as certain enteroviruses (coxsackievirus B and echovirus). If you have an active infection with one or more of these, ME/CFS specialist doctors consider that it could be the cause of your ME/CFS, and will treat with the appropriate antivirals or immunomodulators.

    I find it hard to interpret your EBV results, because normally they would give you a numerical result, whereas your lab report just says "reactive" or "non-reactive". However, the fact that your lab results conclude with "possible recent infection" suggests that you may currently have an active EBV infection.

    Treatment given by ME/CFS specialist doctors for an an active EBV infection includes Valtrex 1,000 mg x 4 daily. This is Dr Lerner's protocol for EBV ME/CFS. It usually takes 3.5 months to begin to see improvements, but the full benefits of this antiviral can take up to 2 years to manifest.

    You can by Valtrex at these prescription-free pharmacies, but unfortunately it is expensive, and may be confiscated by Canadian customs.

    It is immoral that doctors will not prescribe these antivirals, as they do help some ME/CFS patients.



    Other much cheaper options you might consider to improve your ME/CFS are: the methylation protocol, low-dose naltrexone. Some info about them here.
     
  3. Anana

    Anana

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    Thank you so much for the reply. I will look into the links you supplied! I know, Canadian lab results are qualitative instead of quantitative, which is very frustrating (amongst other things).
    Thanks again!
     
  4. Patrick*

    Patrick* Formerly PWCalvin

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    Anana, I recently went through a long period of trying to determine if I really have active EBV because tests repeatedly showed that I had an active infection. My doctors couldn't agree on whether these test results were significant or errors. You said you've been lurking, so maybe you've already seen this: http://forums.phoenixrising.me/inde...is-right-about-chronic-ebv.56744/#post-942956

    Also, most of the blog posts on my blog throughout all of 2017 deal with this question of what to make of my EBV IgM test results and whether and how to treat EBV. You might find something interesting there: http://quixoticmeblog.blogspot.com/2017/01/i-have-active-ebv-infectionagain.html

    Good luck.
     
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  5. Anana

    Anana

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    Thank you SO much for your knowledge! It sounds like we're in the exact same boat.
     
    Patrick* likes this.
  6. Learner1

    Learner1 Forum Support Assistant

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    Sounds like it may be worth treating and see if you feel better. My brain fog and cognitive dysfunction improved dramatically within 4 weeks of Valcyte.
     
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  7. Anana

    Anana

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    Really? How long have you been on Valcyte now? Was it for chronic EBV? Thank you so much for replying!
     
  8. Learner1

    Learner1 Forum Support Assistant

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    Yes, I've been on it for 7 months for chronic EBV.
     
  9. Tammy

    Tammy Senior Member

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    I have been on an anti-viral protocol for EBV for 2 and 1/2 yrs using herbal anti-virals. Although I am not cured...............I no longer feel that horrible 24/7 yucky flu feeling. I had many layer upon layer symptoms............and many of those are gone. I learned more about EBV from Anthony William...............his 1st and 3rd book have the best information I've come across since researching this illness for the past 20 yrs.
     
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  10. rockymountainmama

    rockymountainmama

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    Dear @Hip,
    I too received the "positive" EBV results from Mayo, however they were positive for every EBV category, IGM+ included. (actual mono was in 1983)
    I have since found out that ARUP does the quantitative results, and that many US labs will send to ARUP, one just has to specify ARUP on the Order.
    I have long wondered about enteroviruses being causative for me because I did indeed fall ill rather suddenly, in 1996, while living for months in Belize and drinking collected rainwater.
     
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  11. jodiesattva

    jodiesattva

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    @Learner1 I just read that mini roadmap...

    Today I was going through all my lab results (looking for iron tests because I couldn't find any since 2014), and I decided to plot my EBV titers on a chart because I'm a nerd. I also plotted some other stuff that's been bothering me, but that's beside the point right now.

    From the mini roadmap this, "unusual types of infection that do not produce new viral particles, and this may explain why not much virus is found in the blood in ME/CFS" hit me like a truck and I remember you mentioned that to me. And then this "antibody titers of 1:640 or higher in the Quest EBV IgG VCA test." Let's just say I'm convinced, as my VCA IgG hovers between 4.50 and 5.00.

    @Anana please try and see a specialist. I hope you can get help. I originally contracted mono in 1995, and upon looking through all the medical records and labs I have access to, I think it's been wreaking havoc on my system since then. I relapsed just about two years later (luckily I was able to get a mono test from student health) during final exams my sophomore year in college. And I may have been ok for most of the time since, but I found doctor scribbles of me complaining of malaise and fatigue; and I remember asking for mono tests, but them refusing since I'd already had it and "that's not possible!"
     
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  12. Learner1

    Learner1 Forum Support Assistant

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    Chronic EBV is well documented.
     

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