I’ve had mono/EBV since 2005. In the last 2 years it’s reactivated 4x

Posted by jessicamakin @jessicamakin, Jan 25 8:13am

I’m 33 year old woman. I had my first encounter in 2005 with mono, then relapsed a few weeks after I returned back to school from initial infection.

It stayed dormant until April 2019.

Then 2024 comes, my first time back to college after ten year hiatus, it reactivated wickedly in January 2024, then in May 2024 I relapsed again.

I then got it again November 2024, then April 2025, then July 2025, then November 2025, and most recently blood tested again and my EBV levels are slightly decreased from novembers numbers but doctor said to treat it as chronic EBV, that I’m asymptomatic and it’s not a new infection, it’s reactivated from a previous infection, and that not to worry about being contagious. The only symptoms I have this time is extreme fatigue.

My question is if going to the infectious disease doctor will help get more answers, is there anything that can be done to prevent this from reoccurring so much so frequently. It is extremely abnormal and wreaking havoc on my life.

Any insight and advice would be greatly appreciated.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

sue222! | @suewilliams64 | Feb 24 3:28pm

I’m so sorry you too are struggling with this! My first case was Nov 2019 and weirdly after my 2 Pfizer covid vaccines I’ve had it 3 more times since. Like you I go back and forth with new episodes or reactivation. I did the infectious disease specialist and they came up with nothing except another underlying autoimmune which doesn’t help. So no, the answer is you can try but no one has a remedy except eat clean fresh fruits and veggies and tons of rest and NO stress! Unfortunately when you can’t work and are worried about money… pretty hard not to do!! Just do your best

therealsharic | @therealsharic | Mar 17 5:09am

There's no cure or treatment. I've seen all the doctors all the specialists and it's chasing a ghost. The best thing that you can do is accept that you have a chronic lifelong immune compromised condition. I never even remember having mono. But I have extremely high viral loads for caebv. It is simply lifestyle change literally limiting all stress in your life. And let me tell you that's hard. I'm a nurse and it's very very difficult but I literally simply exist to work and come home. I can't be in a relationship I don't hold many friendships because I don't know how I'm going to feel in order to be able to do anything.

Please sign in or register to post a reply.