I am a 32 year old female dealing with chronic mononucleosis symptoms. I contracted a pretty extreme and debilitating bout of mono just after my 30 th birthday and have been struggling to find answers and get better for the last 2.5 years. I have no primary care health coverage but have had blood work done regularly. I am medically minded but cannot figure out why my titers are still so high and what this means, they do not seem to change: VCA IGG: 2.85 H (> 1.10 is positive), EBNA IGG: >5.00 H (> 1.10 is positive) the IGM value is negative.
Do these levels seem extremely high to other people out there. I am very confused since I have nothing to compare these to and no doctor to guide me. I know each lab is different in the way they grade but what are some titer values of others out there and do you have symptoms with these high levels?
Another concern I have is that Epstein Barr-EBV is considered an oncogenic virus which means it has been linked to several cancers! So I am wondering if anyone has any insight on this link since 90+ percent of the population has EBV antibodies, does this mean we are all at risk for several rare cancers or just those with high titers or what?
Also, for future knowledge: Which doctors or care providers are best at working with EBV cases? It seems that many care providers are not clear on how to interpret titer levels or treat this virus.
I so appreciate any help or clarity and take comfort in knowing I am not alone. Thanks for all your posts everyone!
I am looking for help also. I just posted my new test results and they are similar to yours. My EBNA was >5.00 and my VCA IgG was also >5.00. The other results were normal range. My doctor who did them told me they don't mean reactivation but wants me to go on Valcyte anyway because I have high HHV6 also.
I honeslty don't know what to do....I did tons of reading and since my EA was in the normal range I take it to mean these levels just mean I had a past infection and not the cause of my current symptoms.
Both EBNA and VCA IgG are levels that indicate a past infection and once infected they can remain positive and high for life. Perfectly healthy people with no symptoms can have high EBNA and VCA IgG titers. On the other hand, many with CEBV can also have high levels of those titers. They do not, in and of themselves, indicate a reactivation, but do not necessarily rule out reactivation either. The problem with EBV titers is that they usually are not helpful/mean nothing unless you need to have a new infection diagnosed. (In those cases IgM and the early antigen(EA) will be positive). Some people show increased levels of the early antigen (EA) or IgM during reactivation and others don't.
The extreme variability of lab tests is what makes CEBV so difficult to diagnose.
Wow, 2-1/2 years is a long time to be dealing with this! As pitterpat69 said, your test results aren't all that helpful because they show an active (also evidenced by your symptoms) but not recent (which you already knew if you've been dealing with it for 2-1/2 years) infection. So at this point, there may not be a whole lot of a point to continuing to get the test done. What you need to do is (and this will answer one of your other questions) take your EBV results and find an Infectious Disease Specialist (IDS). They will have WAY more experience and expertise dealing with EBV (especially chronic cases) than a regular doctor will. Also, I wouldn't worry about the EBV/cancer link, and here's why: approximately 90% of people have acquired EBV by age 30 (and we can logically assume that number would be even higher for older people). Therefore, for any cases of cancer in people age 30 or over (which I think is easily the majority, although I don't have numbers on that), 90% will have EBV. So of course it looks like there could be a link there, but that same 90% EBV rate applies to non-cancer patients as well. Honestly, I have yet to see a credible study which has related any type of cancer to EBV. I would be more apt to believe a link exists between EBV and Chronic Fatigue Syndrome (CFS), but that has not been proven, either.
Anyway, I do hope you start seeing improvements soon! Don't be afraid to keep us posted on how things are going!
Hi! My situation/condition is actually quite rare and very strange. The antivirals I tried (Acyclovir) actually made my condition a little bit worse and didn't improve anything. But as I mentioned earlier my situation/condition is much different.
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