Found out I have Epstein Barr Virus

Discussion in 'Fibromyalgia Main Forum' started by kriket, Jul 9, 2009.

  1. kriket

    kriket New Member

    Hi all-

    I just found out today that I have EBV. Apparently anyone who has had mono in the past carries this virus. It has a lot of the same symptoms of fibro. Dr. thinks my fibro is a result from the EBV. Do any of you have epstein barr virus also??

    What did the dr do for treatment?

    Thanks Kriket
  2. heapsreal

    heapsreal New Member

    Most people eventually end up with ebv and it runs its course and its over and stays in a latent state. But some with cfs/fm it reactivated and you go through another episode of ebv /monoclulosis or several episodes. Most docs wont do anything, you need to find a doc who will give you antivirals like valtrex or famvir, these dont kill the virus as such but stop it reactivating, hopefully 6-12 months down the track your immune system recovers and is able to keep ebv in a latent state by itself. Ask doc for a lymphocyte subset test and if your cd8 lymphocytes are elevated then its a good chance ebv is reactivating. When on antivirals , these readings should go down and you should feel somewhat better. I would also look into things that strengthen your immune system like a combination of herbs like echinacea, astragalus, ginseng etc. Also make sure you get good quality sleep, even if it means medication, without good sleep your going to struggle.

    A good book is from from fatigue to fantastic, although not perfect it will point you in the right direction. The earlier you get onto this virus the better.
    good luck
  3. skeptik2

    skeptik2 Member

    Hi! So sorry you have EBV. Your immune system may be strong enough to get it back in check, but if not and it becomes "chronic EBV" it can lead to many, many other things, including cancer.

    I do not mean to scare you, but to warn you that you might want to see an infectious disease specialist and have an array of tests run to determine the status of your immune system and whether any other latent infections are present.

    Jonathan Kerr, a geneticist in the UK found many co-factors in his amazing gene studies in CFS patients, and many of them involved the EBV. There is more info regarding this on this message board, just enter his name in the search engine above. Hopefully, the thread is still here; coversely, the library/archives may have it. He determined 7 subtypes of patients.

    Do everything you can to support your immune system; suggestions here are very helpful, and ProHealth has some excellent products for this. It is a sort of hit and miss thing because all of us are different immunologically and genetically, but don't give up, keep reading and learning and trying.

  4. mujuer

    mujuer New Member

    I just found out a couple of months ago that I have it too. I was told it was the initial infection that occured somewhere around Christmas or thru January. I am 51 yrs. old and have never had mono before. I don't know a thing about it but thanks to all of the others on here who commented. I will look up the suggestions. Were you tested for other viruses as well? I am on famcyclovir and it has done wonders for me. Did your Dr. put you on anti-virals? P
    [This Message was Edited on 07/10/2009]
  5. Beadlady

    Beadlady Member

    I'm sooo sorry you have this to deal with too. I wish you the best in getting this under control.

    Know you're in my thoughts ok.

    Check your regular e-mail :)
  6. heapsreal

    heapsreal New Member

    I currently take famvir 250mg twice a day since november 2008, it has made a big difference although still have some issues such as insomnia which i am currently working through. I had an elevated lymphocyte count which can indicate an ongoing viral infection and famvir has knocked my lymphocytes down to a more normal level,,not quite there yet but getting there.
  7. momof3inks

    momof3inks New Member

    I have been recently diagnosed with having high titers of EBV & CMV (?). I am seeing a naturopathic doctor and he said that it indicated CFS more than FM (my original diagnosis). He said one of the virals was 8.0 (normal range is 0.2-0.8).

    I was curious what all of your levels came to? Since I am seeing a naturopath, he is just giving me supplements to help my immune system recover so that it will not let the viruses get out of control.

  8. jasminetee

    jasminetee Member

    Most people carry EBV. The Medical community once thought that EBV causes CFS (not FMS) and maybe your doctor read that and got confused. Anyway, healthy people often carry EBV. However many of us, myself included, came down with CFS after getting mono and having it chronically after that which became named Chronic EBV and that name was later changed to CFS in the late 1980s when studies showed that many patients with CFS were found to not have EBV.

    It wasn't until a decade and a half after coming down with EBV that I developed FMS myself. Although I had CFS that entire time.

    It's easy to see why doctors are so confused.

    [This Message was Edited on 07/10/2009]
  9. ladybugmandy

    ladybugmandy Member

    dr. lerner prescribes 4 g a day of valtrex for EBV (depending on your size) and most people have to stay on it forever.
  10. kriket

    kriket New Member

    The Dr. is gna put me on an anti-viral med. for 2 months and maybe for the rest of my life. From what I understand it lays dormant and can strike out at any moment esp. under stressful situations. He told me that my immune system is weak from this and it can cause severe achiness esp. in legs and terrible fatigue. It is a lot like fibro.

  11. richvank

    richvank New Member

    Hi, kriket and the group.

    In order to put these viruses into their latent state and keep them there, certain things are necessary. These include normal levels of reduced glutathione, a normal capacity to methylate (and thus silence) viral DNA, and normal folate metabolism to be able produce new RNA and DNA in support of the cloning and proliferation of T lymphocytes, which are needed to fight viral infections.

    According to the Glutathione Depletion--Methylation Cycle Block hypothesis for the pathogenesis of CFS, all these functions are rendered abnormal, and that's why the viruses continue to have a field day in the bodies of PWCs.

    The good news is that there is a way to correct these problems. It is the methylation cycle block treatment. It is in growing use, with several physicians now using it in their practices.
    It has been through a preliminary open-label clinical study, which was presented in a poster paper at the IACFS/ME conference in Reno this past March, which is available on the internet, and it produced significant improvement in about two-thirds of the patients in the study.
    It costs less than $3 per day, and consists of targeted nutritional supplements, not prescription drugs. There is a lab test available commercially that will determine whether a partial methylation cycle block and/or glutathione depletion are present, and periodic repetition of this test has been shown to indicate the progress of the treatment in terms of improvement in glutathione, folates, and methylation capacity. I have discussed this several times on the board over the past two and a half years. If anyone would like more detailed information, please email me at richvank at aol dot com. I am not financially involved in either the lab test or the supplements.

    Best regards,

  12. I swear I have it. Reg. blood work comes up a virus? Is there a actual mono test? I amj beyond exhausted but have trouble sleeping . I am so tired of being tired.