Discussion in 'Fibromyalgia Main Forum' started by 3gs, Apr 19, 2009.

  1. 3gs

    3gs New Member

    I have noticed lately EBV being talked about.Simpson asked a thread start on how many have it.

    I was first diagnosed in 1988. Oct.2008 virus reactivated. Have been in a terrible flare since then. How many are having their ebv treated with antivirals?
  2. TeaBisqit

    TeaBisqit Member

    I have EBV and HHV6. They said I had mono back in the 80's. But I was later told that my viral titers were sky high for both EBV and HHV6. My doc said he didn't know how I was walking around with them so high. And he couldn't believe anyone missed it on my prior bloodwork cause I had been given the stupid "labs are normal" speech before I went to him.
  3. SpecialK82

    SpecialK82 New Member

    I have EBV - high titers of 1:10,240 - been diagnosed for a few years.

    Started Valtrex last year for 8 weeks but had to stop due to stomach problems with the drug.

  4. panthere

    panthere Member

    I had EBV reactivated July 08, been in a relapse since then. First I was taking famvir and then switched to valtrex. No change so far...
  5. hensue

    hensue New Member

    For EBV also many of the herpes I cannot remember them all.
    My doc says everyone has had viruses so he doesnt really think that has anything to do with it.
    He is the one who mentioned it to me many years ago.
    Also have herpes that goes into my eye. Very dangerous
  6. ladybugmandy

    ladybugmandy Member

    been sick since mono 17 years ago. viral titres not very high....maybe a little.

    was severely ill when i started antivirals 2 years ago. am about 20-40% depending on the day.
  7. outofstep

    outofstep Member

    got "mono" (initial ebv infection) in 89 and never fully recovered, then had major relapse in 2003 that left me completely disabled. Antivirals helped until I developed allergies to acyclovir-type drugs.
    [This Message was Edited on 04/19/2009]
  8. jasminetee

    jasminetee Member

    I got EBV out of the blue one day when I was 20. I've had CFS ever since.

  9. annwinter

    annwinter New Member

    i got mono when i was 20, and i was never the same since. i'm now 51.
  10. sweetbeatlvr

    sweetbeatlvr New Member

    chronic mono.

    my IgG titres are high (the "past" infection ones).

    i'm diagnosed w/ FM.

    never knew i had mono.
  11. outofstep

    outofstep Member

    Here's a study where the theory is that EBV is triggering an endogenous retrovirus (HERV-K18):

    Fatigue states (like CFS/post-infectious fatigue syndrome) can follow EBV infection:

    If you go to Dr. Martin Lerner's website he's done lots of studies where treating EBV improves CFS symptoms.
  12. ladybugmandy

    ladybugmandy Member

    i dont think EBV is airborne. it is in saliva.

    it is true that most people carry EBV but it can cause a host of disease. some people have a genetic defect that renders them unable to induce latency of the virus.

    if you got CFS right after EBV, as far as i'm concerned, your EBV is still active and causing disease (possibly reactivating other viruses too). it's common sense.
  13. stschn

    stschn New Member

    Had my first test done on ebv and cmv in earily 90's both very high. My then Doctor said if my sickness was viral they would have found it by then. I first started with Dr. Montoya in Feb. of 2007 all were off the chart. I did 6 months of Valcyte -pretty good cognitive recovery. Then on Valtrex-side effects to much- nothing like Valcyte but to much. Am now on acyclovir and doing better. Doctor Montoya and many others feel that our immune system is up regulated. Had this DD for 21 years.
  14. SpecialK82

    SpecialK82 New Member

    stchn - the side effects you had on Valtrex - are you talking the herx-like symptoms?

    I'm surprised you don't feel the same effects on acyclovir as you did on Valtrex since Valtrex changes to acyclovir in the body - I wonder if it's a dosage difference??

  15. ladybugmandy

    ladybugmandy Member

    ebv travels in droplets of saliva that can fly through the air but it is not airborne per se. it does need saliva.

    Guillain-Barré, RA, lupus, MS - are all linked to EBV.
  16. stschn

    stschn New Member

    I've head the same thing that valtrex changes in to acyclovir in the body but several people that I've talked to have found that they do better on acyclovir. Was it herx-like symptoms? I have no idea certainly nothing like I had on valcyte I just know I felt terrible day in and day out not any one single listed side effect but really bad. Yes it is lower dosage and when I left a message with Dr. Montoya about the dosage he had no problem with 400mg 3 times a day with the acyclovir instead of the 500mg 3 times a day with valtrex.