Diagnosed as chronic EBV but results show past infection
My repeat EBV test shows a positive antibody of 99 but IgG and IgM remain negative. The first test 3 weeks ago showed an antibody of 116. Both times the lab noted results suggestive of past (latent) EBV infection. Despite this my doctor has diagnosed chronic EBV and told me to rest and reduce workload. I have most of the symptoms others on here are suffering with, particularly fatigue, aching and cramping, tingling and anxiety, but don't understand an EBV diagnosis when the tests are negative. He says the fact the antibodies are so high indicates an infection (if it was truly latent he said it would be 30 or lower). All my other bloods are fine as was a brain and spine scan for MS. Does this make sense to anyone else? Can believe how terrible (and now confused) I feel!
I stopped getting the blood work because at this point, it's irrelevant. We have EBV / post mono - chronic symptoms. Blood work is only going to confirm what we already know.
I have been having heart aches, and trouble swallowing. I had an EKG on Tuesday (result not given to me as of yet). I have to follow up with GI regarding the swallowing issue.
When I am not working, I usually just lay around in bed. This *****, and I don't think my quality of life will improve.
I never even knew there was a special scan for MS. That's good to know. I've read that 100% of MS patients have EBV.
How old are you and when did you first realize you had EBV? I'm a 33 y/o male and have had symptoms since 2009/2010. I am unsure when I first got mono, as the symptoms are so similar to the flu.. I was actually never diagnosed with mono.
I'm 45 and had the symptoms for 2 months despite never knowingly had glandular fever. My confusion is being diagnosed with EBV based on high antibodies despite the blood tests showing no active infection. Is that the same for you? Don't worry about MS - it's very rare and as most people have had EBV in some degree you shouldn't make a correlation between the two. They check for MS with an MRI of your brain and spine but the neurologist did a physical exam of me first and was sure I was clear. This involved using a pin to test for feeling on my hands and feet, me touching my nose with each index finger with my eyes closed, walking in a straight line with my eyes closed, lifting my arms and legs while he pressed against them and checkin knee and arm reflex with a soft hammer. I'm taking Pharmatron which has helped with energy levels. I think trying not to worry and being positive is important.
One confusing part about having glandular fever (mononucleosis) is that most people get it and think they have the flu. It's also misdiagnosed as the flu by doctors a lot of the time. The blood work tells the true story years later once the symptoms of fatigue (and other symptoms persist). I could have had mononucleosis when I was in my early 20's. I will never know when I first had mono.
My EKG came back as normal. I have chest / heart pains, extreme fatigue, stomach pains, erectile dysfunction, difficulty swallowing, and my arms feel very heavy (among other symptoms). I don't have much of a life now. When not at work, I just rest and stay in bed.
One positive thing you do have going is that you are 45. I have read that the symptoms are not as bad for people who get mononucleosis / ebb after 35 or 40.
The doctors at my hospital refuse to talk to me about ebv. They refer me to the CDC website and cancel all my consults to speak with hemic / infectious disease specialist.
I have accepted that I will likely get some form of cancer before I die. I am in a lot of pain and do not have any real solution on where I can go or what to do to feel better.
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