just got diagnosed with EBV, not sure how progressed all this is

Discussion in 'Fibromyalgia Main Forum' started by patpeymom, Oct 29, 2005.

  1. patpeymom

    patpeymom New Member

    About 2 weeks ago, I went to the fair with my children, rode a couple of rides, and then by the time I got home I was sick as a dog (nauseated big time) Thought it was just that I am WAY to old to be riding rides lol. I went to the doctor the next day, he said I had two ear infections, and sent me home with some antibiotics. The next day all of my lymph nodes were swollen in my neck, big time shotty lymphadenopathy, and behind my head as well, the back of my head was very sore.... I went back to the doctor and he told me that he really felt I had mono. He did a Monospot on me, CBC and also Epstein Barr. I had severe mono with every symptom imaginable, was in the hospital for a week, when I was about 20, Im 40 now, and I have to admit I feel the exact same way. The Monospot came back negative, and the CBC was okay, but the Epstein Barr was very high. He said right then that I had chronic fatigue, he put me on acyclovir, but now reading all of your posts, now Im not sure what I have. I still feel really bad... can't sleep more than about 1-1/2, wake up with severe muscleaches in my neck and the back of my head, my back hurts, i run a low grade fever every day, i feel so tired that i have a hard time just doing anything for me or my family. I have always been a go getter, and now i feel like im totally wasted all the time. Im just really kinda lost at this point, if anyone can offer me any suggestions on where to go from here... please? Thanks and God bless all of you!
  2. Sandyz

    Sandyz New Member

    I have the epstein bar virus too. It is another difficult thing to live with for us CFS/Fm suffers. How high did you test come back? Mine was 5.60. I took acyclovir for about two monthes. I haven`t been retested yet to see if it gone. I don`t feel like I am totally over it but I do feel way better then I did. I don`t have a fever and sore throat everyday anymore. I don`t feel flu-like anymore. Stick with it and it will help you a lot.
    [This Message was Edited on 10/29/2005]
  3. busybusymom

    busybusymom New Member

    Hi Patpeymom - All your symptoms, I experience, and I have an extrememly high EBV titer. After I got sick 5 years ago, my titer was 600 times the normal. Swollen lymph nodes, severe fatige, muscle aches, insomnia - I've got them every day. I don't take my temp, so not sure what it is running. My recent EBV tests show that I have a reactivated infection - my titers are still in the 200s and there were a couple of other EBV tests (I'm not sure what they mean) that were very high. Before I was diagnosed with a positive EBV test, I also had a bad upper respiratory cold - common trigger for EBV.

    I was given Famvir to try - couldn't tolerate it. Is acycolvir an anti-herpes drug?

    I know what you are going through; one day feeling great, the next your life is turned around. Just take it day to day; that is how I live my life. I pray you have the support you need, too!!

    I have found this website to be a lifesaver, and remember, you are not alone!!

    Jennifer


    [This Message was Edited on 10/29/2005]
    [This Message was Edited on 10/29/2005]
  4. patpeymom

    patpeymom New Member

    yes acyclovir is another antiviral... and they up'd me to two tabs a day, about 800 mg, I dont know if its working or not.., but ill keep plugging along. Thanks for the input, it is much appreciated, its hard to be ignorant of something that has changed my life. Thanks again, and anything anyone can offer is most appreciated.
  5. ldbgcoleman

    ldbgcoleman New Member

    I have it too but I'm better. It's my understanding that you have to be on Antivirals at least 6 months and then off for two weeks to see how you do then if you start to have symptoms back on. You also need to be on immune boosting things like Transfer factors and Miyake mushrooms and maybe NK stem. Good Luck! Lynn
  6. winsomme

    winsomme New Member

    there are two DRs that i know who treat EBV agressively.

    Dr Dantini in Florida, and Dr Lerner near Detroit, MI.

    here are their websites:

    http://www.cfsviraltreatment.com/

    http://www.4fibromyalgia.com/

    Dr Dantini consults over the phone if you are not near his practice, but Dr Lerner requires that you travel to see him in person.

    also, i believe the FFC (Fibro and Fatigue Centers) also treat EBV, once they attack nutrional, immune and hormonal problems. they are all over the country, so maybe there is one near you. here is their website:

    http://www.fibroandfatigue.com/index.php

    many, many people are going to FFCs on this board, so if you find an FFC near you, you might want to post a question for people who have gone there.

    let me know if i can answer any other questions about either of these DRs.

    thanks
    bill



    [This Message was Edited on 10/30/2005]