Discussions By Condition: I cannot get a diagnosis.

reactivated EBV or is it Lyme Disease?

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: achybreaky41
  • March 23, 2009
  • 03:43 AM

I have been researching this reactivated EBV for almost a year now as it just wont go away and leave me alone. I am run-down all the time, have poor sleeping habits due to being up late hours of the night with leg pain and throbbing in my knees, ankles and toes. Nightly sweats, severe migraine, eye sensitivity, swollen glands in my neck that are sore to the touch and flu symptoms. My blood test came back with a negative rheumatoid factor, my ANA-DIRECT is at 33 which is negative. What is scaring me is my EBV AB VCA IGG which is a skyrocketting 3907 and is positively high. My EBV EARLY AG AB is at 274, also high, EVB NUCLEAR AG 1 is at 153, all positive. My doctor told me I had mono, but it keeps coming back and stays at these high levels. I am starting to worry that somehow it is connected to my migraine headaches and may have something to do with Lyme Disease?? The migraines have been going on since 1988. The severe leg pain has been intermittent thru the years and when I was younger the doctor just called it "growing pains". Yes, I still get them and I am now 41 and miserable. Can someone give me some answers as to what I should do next? I cant spend my life indoors confined...

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8 Replies:

  • If you think you might have lyme disease the simple question is have you been tested? From TV I know it is possible to get a negative result even if you do have it so if you have any doubts get tested again.
    halal37 96 Replies Flag this Response
  • Check out the replies to Sleeping Death's post:http://forums.wrongdiagnosis.com/showthread.php?t=43708 good info on lyme in the reply posts.
    halal37 96 Replies Flag this Response
  • My doctor http://kona.kontera.com/javascript/lib/imgs/grey_loader.giftold me I had mono, but it keeps coming back and stays at these high levels. I am starting to worry that somehow it is connected to my migraine headaches and may have something to do with Lyme Disease?? The migraines have been going on since 1988. There is a connection between reactiving mono (EBV) and chronic fatigue immunity dysfunction syndrome (CFIDS). 10% of those who get mono, end up getting CFIDS triggered (probably if one has a genetic preposition to it).
    taniaaust1 2267 Replies Flag this Response
  • I went to the site CANLyme.com and checked out the symptoms and it is almost frightening. I thought there would be a difficult chance of contracting this due to my location in Ohio, but we had relatives visit from the south and I distinctly remember a difficult rash & flu. I thought perhaps it was shingles as I had already had chicken pox when I was a teen. I have all the symptoms except I dont get as much sleep as I'd like and I feel like the symptoms come and go in cycles. I lose weight, no-apetite, then I gain weight and feel better for awhile. My temp ranges btwn 96-97 and anything higher and I feel feverish. The leg pain feels like rheumatic fever, but I have 0 rheumatoid factor. How can I get an accurate test if I live in the US? Aren't they banned?
    Anonymous 42789 Replies Flag this Response
  • Sounds like you most definitely have Chronic Fatigue Syndrome. I had most of the same symptoms and it took 4 years to get disgnosed. 6 months after that I was diagnosed with Sjogren's Syndrome, which the primary diagnosis, and CFS is secondary. Seems most people with CFS have chronic Epstein Barr, or mono. If you've had mono anytime in your life, it can come back chronic, which is one of the suspected causes of CFS. I never even knew of a time I had mono prior to the CFS diagnosis. Go to www.cdc.gov/cfs and read everything they have on it.I am a RN, and I recommend anyone having problems getting diagnosed to go to a holistic DO. I went to a variety of 13 MD's who specialize in one thing or another & could not diagnose me. It wasn't until I went to a holistic DO that I started getting diagnosed. They run many different tests that MD's don't. Hope this helps
    AngilT 13 Replies Flag this Response
  • Its been awhile since I have made any progress where doctors are concerned, symptoms are regular with maybe 1 good day every two weeks. There is a big difference in the type og headaches I am experiencing. Prior, I would seem to have a basic migraine with halo and vomiting, now it primarily affects the eyes moreso than before. It is very rough having flu-like symptoms everyday and not allowing itto take its toll on your spirit as well as your body. There are many days of discouragement. My insurance isn't the best and it is difficult to have the proper bloodwork done let alone find a doctor willing to investigate this problem. I have been told to see an infectious disease specialist by my neurologist and my primary care physician just moved out of state. ER docs just wanted to mask the symptoms with "feel good" steroids and dilaudid. Everything returns after the course of steroid therapy is over... I was diagnosed with fibromyalgia back in the early 90's along with myofascial pain syndrome and migraine and now a misdiagnosis of Reiter's Syndrome. The search for a doc goes on. Large hospitals scare me and believe it or not, sometimes I am too sick to drive to my appointments.
    Anonymous 42789 Replies Flag this Response
  • Its been awhile since I have made any progress where doctors are concerned, symptoms are regular with maybe 1 good day every two weeks. There is a big difference in the type og headaches I am experiencing. Prior, I would seem to have a basic migraine with halo and vomiting, now it primarily affects the eyes moreso than before. It is very rough having flu-like symptoms everyday and not allowing itto take its toll on your spirit as well as your body. There are many days of discouragement. My insurance isn't the best and it is difficult to have the proper bloodwork done let alone find a doctor willing to investigate this problem. I have been told to see an infectious disease specialist by my neurologist and my primary care physician just moved out of state. ER docs just wanted to mask the symptoms with "feel good" steroids and dilaudid. Everything returns after the course of steroid therapy is over... I was diagnosed with fibromyalgia back in the early 90's along with myofascial pain syndrome and migraine and now a misdiagnosis of Reiter's Syndrome. The search for a doc goes on. Large hospitals scare me and believe it or not, sometimes I am too sick to drive to my appointments.I had Lyme for 3.5 years until a kind infectious disease doctor did the right test on me and found all this strange antigen. He said it was Lyme and I lived in Illinois where the CDC didn't recognize it. To me all that stuff you talk about that you are going through sounds like Lyme - I got to the point where I would start having trouble with emotions - yelling fits even when I knew it was wrong. It was all neurological. The infectious disease doctor saved my life. I had fibromyalgia, knee swelling and lots of fluid, feeling "infected", my muscles were highly spasm-ed. Day by day I would feel a little better then sick, weak and very yucky like i was coming down with something. I took years of antibiotics to get over it. I was given an antibiotic that could penetrate into the cell because lyme can live inside of white blood cells even. Good luck
    Anonymous 42789 Replies
    • September 7, 2010
    • 10:31 PM
    • 0
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  • Look up Hodgkin's Lymphoma - the symptoms you describe are exactly what they say for Hodgkin's Lymphoma:(http://www.medicinenet.com/hodgkins_disease/article.htm)...right down to the night sweats.
    Anonymous 42789 Replies
    • October 6, 2010
    • 04:04 AM
    • 0
    Flag this Response
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