Anyone out there with EBV/CMV???????

Discussion in 'Fibromyalgia Main Forum' started by bandmom90, Apr 24, 2007.

  1. bandmom90

    bandmom90 New Member

    EBV/CMV and than found out later they have FMS and/or CFS.

    I was dx this past dec. with EBV/CMV while in the hospital for other things and since than have had more pain and other symptoms that are like FMS/CFS. My pcp is currently trying to find what is wrong with me and will be doing blood work as soon as I'm able(long story). He thinks it's FMS and/or Rhuematoid Arthritis. He has to be careful what he gives me because I am on coumadin(anticouagulant). He put me on cymbalta a week ago and am not sure if it is helping me. My pcp is great and will eventually find out what is going on. I was also in a car accident approx. 3 years ago.

    Would love to hear anyones thoughts if the EBV/CMV(or other acute viruses) is something that is prevalant with the FMS/CFS.

    Thanks, bandmom
    [This Message was Edited on 04/24/2007]
    [This Message was Edited on 04/24/2007]
    [This Message was Edited on 04/24/2007]
  2. bandmom90

    bandmom90 New Member

    It's the only way to keep this where it can be seen.

    Would really like to hear......................
  3. lyradot

    lyradot New Member

    I was dx with cf/FM/ myositis/ dysautonomia 5 yrs ago. Approximately 6 yrs ago my infant daughter needed a blood transfusion.When my blood was tested by red cross,my daughter could not recieve my blood because of cmv.I have never considered the link.We are all a mystery.
    I have been on Cymbalta 2 yrs .It may take2 or 3 weeks to see any change. I hope it works for you.
  4. bandmom90

    bandmom90 New Member

    I've only posted a few things and never really hear much from anybody. Thanks again for the reply.
  5. bandmom90

    bandmom90 New Member

  6. revlcb

    revlcb New Member

    EBV & CMV dx about 10 years ago. Pretty sick puppy. Then nothing until 2005, when both reared their ugly heads and dx FMS.
  7. irishprincess

    irishprincess New Member

    was diagnosed about 25 years ago.went into fibro about three years ago.
  8. bandmom90

    bandmom90 New Member

    I will be researching this more before seeing my pcp in a few weeks. Thanks again for replying.
  9. Nanie46

    Nanie46 Moderator

    I have had FM for 20 years. I developed it shortly after having a bad respiratory viral infection. I always knew that my FM was caused by a virus. Recently I started phone consultations, testing and treatment by Dr Dantini in FL. I live in PA. My viral testing did include an EBV profile and CMV. You can read in my previous posts what all I was tested for,and the results, I believe, if you click on my screen name. These tests are broken down into different subtests. I was positive for EBNA and EBV VCA IgG. I was also positive for CMV AB IgG. I was positive for some other viruses also. I have been taking Famvir 500 mg three times daily for 7 weeks now. I will be taking it for a minimum of 3-6 months and then as needed according to symptoms. The ELISA test for delayed food allergy testing also has played a big part in my treatment. I have sensitivities to 22 of the 88 foods tested for and I did the elimination phase of the diet for 6 weeks and now I'm doing the challenge phase. You can read more at and Unknown food sensitivities can play a big part in the stiffness, soreness, pain and fatigue. I started to feel better about 10-12 days into my treatment. I have no other health problems to complicate my situation. I am 110 lbs and workout at Curves 5 days a week. I am very functional and try to ignore any discomfort that I have. I am optimistic that I will continue to get better. The Dr said my quick improvement has been unusual and surprising. I had a cold last week and felt more pain since then, but I expect it to improve again. I totally believe in the virus theory and now I'm convinced about the foods also. If everyone would cut things like cane sugar(evaporated cane juice, dextrose etc) and high fructose corn syrup out of their diets, the world would be a much healthier place. Good Luck to you!
  10. spacee

    spacee Member

    I have had high EBV titers for about 21 years. Oddly the CMV is positive at times and not at others.

    I was doing really well (for me) on the Transfer Factors for about 4 years. But since about the middle of January I have been going downhill. About that time I developed chronic iritis. It may have nothing in common with why I feel bad but it did happen about the same time.

    I wish so much I had a doc who knew what was going on.

    I still do my exercise classes despite the fact that I feel so crummy. Some people can do exercise, others just cannot. It is a very individual thing. And it has been that way for me. Some times I couldn't do anything and others I could. I actually hate going to the classes but once I am there and I have done it I feel a little better.

    You are not alone.


    [This Message was Edited on 04/25/2007]
  11. deliarose

    deliarose New Member

    IN other words, high IGG titers.

    I think that the problem may be upstream of that... though.. in other words the reactivated or chronic viral infections are due to a compromised immune system.

    And that is why I am doing Rich Van Konyenburg's methylation protocol.

    there is a lot of info on this on teh board..

  12. bandmom90

    bandmom90 New Member

    Unfortunatly because of a pulmonary embolism back in Nov. I have to be very careful of what I take and my pcp needs to approve it. So many supplements,meds,etc. mess with coumadin(anticoagulant). Like I said in original post long story. The PE is the most important thing right now, but I am continually looking for answers so in the near future I will be able to get my true physical life back.

    I appreciate all the replys.

  13. fiddlestix

    fiddlestix New Member

    Hi there,

    My IGG titers to EBV have been high for two years. They told me I had mono for TWO YEARS! So I went to a specialist who ran some kind EBV DNA test. Apparently we can have high level IGG with CFS/FM.

  14. bandmom90

    bandmom90 New Member

    Thanks fiddlestix. I will ask my pcp about that.

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