Epstein Barr Virus (EBV) Community
Just been diagnosed for EBV and very upset
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This patient support community is for discussions relating to Epstein Barr Virus (EBV), chronic EBV, and infectious mononucleosis (mono).

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Just been diagnosed for EBV and very upset

Hello, well, for the last 5 months I had been having an intermittent sore throat and for the last two years, pain all over that is sometimes worse than other times. My upper back spasms are very severe at times, and at times, I have the "achy" flu-like feeling. I just felt/feel "blah". Well, I finally talked my doctor into having an EBV blood draw, and wow, I am glad I did, here are the numbers:
EBV Ab to Viral Capsid Ag, IgG- 118  Normal range is less than 18.0
EBV Ab to Viral Capsid Ag, IgM- 17.9. Normal reading less than 36.0
EBV Ab to Nuclear Antigen, IgG- 4.2  Normal range is less than 18.0
EBV Ab to Early Ag-Diffuse IgG- 51.8  Normal is less than 9.0
EBV Panel Interpretation-Indeterminate. The panel results are atypical for a past Epstein Barr Virus infection, but the positive IgG antibodies may be indicative of a past infection.

I am so befuddled as to how I got this. I NEVER kiss anyone, never go to parties, I just go to the store and do normal everyday activities, I take vitamins, try to eat well, in other words, I don't see how this happened. The doctor said that it can be caught via airborne body fluid such as one someone sneezes and I happen to be near, or, she said I could have touch a grocery cart where someone had last touched it that had the EBV. I don't know. I do know that I am tired of hurting, feeling depressed, and this sore throat all the time. I would have sworn it was fibro as I have all the points and other symptoms, but, she will not say I do. I am going to see another doctor in a month for another opinion.

I also have a sluggish, very low, thyroid, I have done a lot of research, and I understand that this can also lead to, or mimic EBV as can menopause, which I am beginning as well. She does not agree, so, that is another reason I am seeing another doc.

Anyway, I am scared, I have even read where EBV can lead to blindness and other serious problems, I am out of my mind with worry. I am trying not to over do on the exercise, avoid stress, which is hard as I am a high-strung person, and I have even cancelled starting college as I don't want to get worse or pass this one to anyone, I feel like a time bomb.

When you all were diagnosed, were you scared? What helps you? Is this a form of herpes, a lot of articles I have read says it is and that once you have it, even if it is dormant for awhile, it can flare up and cause the same problems as when you first were diagnosed with it.

I am 53 and until the last few years, in great health, never have smoked, never drank alcohol or coffee and have lived a pure clean life. I know when my mother died in 2005, it took a large toll on me, now, I am worried sick over my dad's health, so, I guess maybe nerves and stress are not helping either.

Well, nice to meet you all, I am glad this forum is here. Take care and God bless.
Susie
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650547_tn?1271776798
Hello, your case seems very strange to me.  For one thing, some of your EBV titers are high, but others aren't.  Obviously if you've been dealing with these symptoms for 5 months or more, it's not an initial infection; why some of your "early" antigens are still high seems odd.  It's much more likely that it's an EBV re-activation, although your test results still seem kind of strange for that.  I know EBV can cause a lot of different symptoms, but you may want to eliminate the other factors (thyroid, etc.) before chalking everything up to EBV.  It's also very possible that it could be a combination of things.  The vast majority of people your age have contracted EBV at some point in their lives; chances are you've had it for a long time, and recent events could have caused the re-activation.  For example, you mentioned stress, which is a MAJOR factor in causing possible relapse.  My suggestion would be to try to get as much rest as possible, even though you don't feel tired/exhausted (which also seems strange, in my opinion); but also make sure to check into the other possibilities as well.  Also, at this point, there wouldn't be much of a reason to get the monospot test; chances are by now it would be negative.  Given your high EBV results, it's likely you had mono at some point, whether you knew it or not.  Hopefully this has helped clear things up a little for you, but feel free to ask anything else!  Hope things start going better for you!
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363281_tn?1353103243
I wanted to add that so far, I am not abnormally tired, still have fairly good energy, but, I sure do have the brain fog, forgetfullness, etc, but, this is also due to menopause and a low thyroid. Geesh, I am upset, I really am not thinking straight.
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363281_tn?1353103243
I am gettting forgetful. I also wanted to say that the doctor did not say anything about having "Mono" Just the EBV, are there seperate tests for Mono?
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Avatar_f_tn
Hello I am also new in this. It is curious that you mention the brain fog, and forgetfulness because I never related it to EBV. I don´t have much to offer because I am also learning but I think nutrition and vitamins might play a role in diminishing symptoms.
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Avatar_f_tn
HI SassieLassie I am just like you in barely discovering how this EBV and how much trouble it can cause. I have had it for going on 2 months and I have not gotten any help from doctors. I have also read that it is because of stress and before this I had a lot of emotional stress and I am sure that's what triggered it. Yes, the EBV is a form a herpes virus and it stays in your body forever. We just have to get it back to dormant stage so it will not continue to cause problems. Hope you feel better soon! God bless you.
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650547_tn?1271776798
Hello, your case seems very strange to me.  For one thing, some of your EBV titers are high, but others aren't.  Obviously if you've been dealing with these symptoms for 5 months or more, it's not an initial infection; why some of your "early" antigens are still high seems odd.  It's much more likely that it's an EBV re-activation, although your test results still seem kind of strange for that.  I know EBV can cause a lot of different symptoms, but you may want to eliminate the other factors (thyroid, etc.) before chalking everything up to EBV.  It's also very possible that it could be a combination of things.  The vast majority of people your age have contracted EBV at some point in their lives; chances are you've had it for a long time, and recent events could have caused the re-activation.  For example, you mentioned stress, which is a MAJOR factor in causing possible relapse.  My suggestion would be to try to get as much rest as possible, even though you don't feel tired/exhausted (which also seems strange, in my opinion); but also make sure to check into the other possibilities as well.  Also, at this point, there wouldn't be much of a reason to get the monospot test; chances are by now it would be negative.  Given your high EBV results, it's likely you had mono at some point, whether you knew it or not.  Hopefully this has helped clear things up a little for you, but feel free to ask anything else!  Hope things start going better for you!
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Avatar_f_tn
My doctor told me I tested positive to a past infection of EBV.

He also told me about 90% of people will test positive for it, it is just lying dormant.

I can't say I freaked out or worried about it much. I have for the past 3yrs felt like my body has the flu & I do have swollen lymph nodes in the neck area and have actually have had a total of 3 enlarged lymph nodes removed.

I guess I am used to the feeling that I hardly worry about it. This is how God made my body.
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Avatar_f_tn
i was just diagnosed with ebv this week - started asking doctor about why i was sooo tired a while ago - not sure how long i have had this; but now that i know, i am also concerned.  it really 'hit' me with thebody aches and feeling like i can't move off the couch about a month ago - been losingg my ability to concentrate at work, can hardly get anything done; hope i return to 'normal soon'...but i was fighting this fatigue for so long and now just gave into it because i know if i don't it will get worse.

i have blurry vision at times, heart palptations with anxiety sometimes upon awakening, (this has gone on for years...and so has the blurry vision )  ...i just feel like now its gotten much worse.  how am i supposed to get better if i have to go to work?  

very concerned...very tired...back to couch...
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Avatar_f_tn
I'm sorry for your situation. I'm saddened that your doctor didn't put you better at ease. Its very common, most after the I initial illness don't have problems. I actually just found out I had it, showing positive for current and past, but the only time in my life I was ever ill like of described was 15 yrs ago. Some titers have lasted over 20 from reports I've read. Please don't stress. Its so easy to get that there is no point fussing over it. Its like pinpointing who gave you a cold when half the people you came in contact with had one. Stressing won't help. Put your efforts into resting and getting well.
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329994_tn?1301666848
I am very sorry to hear about all your troubles. Please do not blame everything on menopause and thyroid, either though. You can be tested for your thyroid and treated. You can take some supplements for menopause to ease symptoms but menopause you just have to get through, in my opinion. I have active EBV or re-activated EBV actually, CFS, and Fibromyalgia. The chronic fatigue can wear you down, along with the constant brain fog but the most important thing that everyone else said is that stress makes it worse, so please keep that in mind, find a good doctor that will test you for your thyroid and that believes in the others.  Exercise mildly and rest as needed. I take a nap or lay down every single day but I will not give in to it and lay in bed all day long (although I want to).  Life is too short. I hope you get some help. I hope we all do. Take care!
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