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My journey with EBV in 2016 - Reactivated/Chronic Active EBV?

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Hi all, thank you for reading my post.

I'm currently going through a sequence of blood tests and treatment (800mg Acyclovir 5x a day for 7 days) tied to a diagnosis of Reactivated EBV that came at the beginning of October 2016 this year - following a positive monospot test back in Feb 2016 as well.

A little additional background:

Early this year in Feb 2016 - I started to feel what I thought was a cold coming on. I didn't think much of it, and I was going on a ski trip in a couple days - so I popped some Zicam's and ignored it. Immediately following my ski trip, my first full day home, I started suffering from some intense sinus congestion that I assumed was sinusitis. The next 2 months consisted of 3 visits to my PCP and 3 different antibiotics being given due to symptoms getting worse and worse. Two months in - my sinuses were more clogged than ever, sore throat and ear pressure/pain was unbearable - and I was having severe night sweats. I also had 2 bean-sized swollen lymph nodes along the side of my neck.

When my doctor prescribed me my 3rd antibiotic, Levoquin - I immediately started to feel better within days. A few weeks later, I was still feeling some of the symptoms and still had swollen lymph nodes. The doctor decided to do a Monospot test, just to see, and it turned out to be positive!

This was a shock to me - as I had mono in high school (now 29) and never knew it could recur. I was also confused that Levoquin made me feel better, as Mono isn't responsive to antibiotics. Despite this, I accepted the diagnosis and moved on as I eventually felt completely better aside from my lymph nodes never going completely down (I was told these are now shotty lymph nodes).

I felt great all summer, however while playing hockey one night at the end of September, I felt this sudden weakness in my legs and cognitive fogginess right in the middle of my game while just skating lightly - no contact injuries involved. The feeling of weakness persisted for a few more days - so I went to my PCP to have various bloodwork done - including a EBV antibody panel and monospot test.

The results can back as a negative monospot, but positive across the board on my EBV antibody panel

VCA-IgM - positive
VCA-IgG - positive
EBNA, IgG - positive

My PCP's diagnosis was that I had mono and would feel better in a few weeks. No real explanation as to why the monospot was negative. After some further questions from me, she referred me to an Infectious Disease Specialist.

His interpretation of my EBV antibody panel results were that it is not an active mono/ebv infection, but showing a remote infection. To be safe, however, he ran a EBV PCR Whole Blood test - which he said goes more in depth to find active EBV infection. This came back positive - and he retracted his prior interpretation, now agreeing that I do have an EBV reactivation.

(If you've made it this far - I seriously commend you)

Where I am today - the Infectious Disease Specialist has me on a 10 day regime of 800mg Acyclovir 5x a day and wants to see me again in 1 month to re-assess my EBV levels. I've had a persistent cough, body aches everywhere with varying intensity, occasional night sweating, and 4 noticeable lymph nodes along the left side of my neck.

I am wondering if this is a reactivation that is going to come and go, or if I am going to suffer from Chronic Active EBV for life. Did I ever actually clear the active virus from February, or has it been active all this time? My lymph nodes in my neck have been enlarged for over 9 months now, but neither my PCP or Infectious Disease specialist see it necessary to investigate them further (I've asked for CT/Ultrasound imaging but been told that is not necessary right now).

September was a very stressful month for me - I had to put my dog down, my girlfriend moved in with me, we adopted a 2 month old puppy, and work has been extra intense - so I can see how all that stress may have reactivated my EBV infection.

My main fears at this point are - what if this is actually Chronic Active EBV? And also, what if the EBV is an underlying infection while my now 10 month swollen lymph nodes could be tied to something more serious like a Lymphoma?

I hope this rambling all makes sense. I guess my main reason for posting here is to see if anyone else has had an EBV experience similar to mine, and if you could offer any advice on how to cope, and what questions I should be asking my doctors?

Thank you all again!
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replied December 13th, 2016
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Wow, sounds like you have an awesome medical team behind, most don't. Yeah, you have symptomatic reactivated Mono, NOT CAEBV (very rare). That's pretty cool the infectious disease doc is letting you take anti-virals, don't get your hopes up though, there's isn't much evidence it will shorten the duration of SYMPTOMS. My conspiracy theory is that lots of people "re-get" mono, it just never gets investigated enough to "prove" it like you. Don't worry, but rest lots. You've learned the hard way that stress can reactivate this stupid virus. Also, watch out for developing health anxiety. That you don't want.
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