I became sick with mono at the end of my 7th grade. I've never been so sick in my entire life. I spent the entire summer sleeping and wasted away to nothing. I couldn't even look at food without vomiting. I was incredibly weak and remember panicking about starting 8th grade and wondering how I was going to get through. I weighed 63 lb the first day of 8th grade. It wasn't until many years later that my parents told me the doctor thought I had lymphoma, at first.

It's crazy how this virus is dismissed so much despite being chronic for some people. Just got back from the ER yesterday and was diagnosed with EBV antibodies for the third time in my life. I'm seeing a infectious disease specialist next week.

Me sitting here with mono 👁👄👁

Finally something about mono!! My personality, severe depression, fatigue, brain fog started directly with mono & I was never the same! Yet no one talks about it

This is my story too, for the past 10 years. I want my life back

I was diagnosed with lupus, POTS, and celiacs in my 30s. But I always told people I've felt sick since I was 16. I just realized I had mono when I was 16. Thanks for this info I'm gonna have a talk with my doctors

Seeing this is giving me hope. I used to be an extremely hyper active competitive athlete until I caught mono in 2018. I can’t remember a day without being in pain since then. I catch about 6 viruses a year, I’m in constant agony, and my bloods are always off. At 22 years old, my doctors tell me I’m young and will recover, and that my symptoms COULD be related but it’s “unlikely”. Fighting for justice because this is not a way to live.

I had mono in 1986. Was diagnosed with Fibromyalgia in 2008...although it hit me in 2007. I read somewhere antivirals wouldn't help EBV. Seemed to have helped this lady. Wish more doctors would jump on this. I lay in bed day in and day out in so much pain, exhausted from doing nothing and just watch the world go by.

So glad she shared her story. I was diagnosed with Epstein-Barr Virus syndrome in 2017. I went to every specialist you can think of before my neurologist diagnosed me. A hematologist confirmed. I suffered from seizures, severe fatigue, GI issues, GYN issues, severe migraines and anemia. I have been on meds since and have very few symptoms/flair ups. I was able to get my life back because someone finally took me seriously. I will never be cured but I can manage my symptoms. Don't lose hope for all the ones out there still searching for answers.

Trying not to cry, watching this video. 33 years old and have had years of illness, pain, exhaustion and symptoms. EBV at 16. I’m lucky enough to have found a doctor to take me seriously, have had so many bloodwork done, so many diet plans, supplements. So much trying to explain myself to people around me. Careers ending prematurely, not strong enough to start a family yet. It’s not a joke, this is really serious. The one thing that has made a different is Low Dose Naltrexone, so I would advise anyone with a similar path to look into that.

i have long covid which has reactivated EBV- i feel like i’ve had mono for 5 years it’s brutal !!!

Why does everyone in here say they don’t recover from it you guys are scaring me

I'm almost 60 now, this started when I was about 5 with recurrent fevers and tonsillitis. My mother has it so I expect I was born with it. At it's worst it caused over 150 migrating symptoms.

Had my first diagnosis at 16. I had another confirmed diagnosis at 27. Ever since I was first diagnosed, I’ve had flare ups at least once a year where I feel HORRIBLE. The fatigue is unreal and the body aches/joint pain is AWFUL. Currently battling this once again at age 32. My kids brought a stomach bug home and it hit me like a ton of bricks. The pain in my bones is almost unbearable

Thank you for sharing the knowledge and your experience you have impacted me in such a positive way . Thank you 11 alive news for sharing the story kudos to the reporting of accuracy

Thank you for this- I think this is a much bigger issue than has been understood. I’ve been exhausted my entire adult life and just thought I was over sensitive. Now I know it wasn’t really in my head- it was in my whole body.

Just got tested and my levels were 691… I’ve been struggling with illness for soooo long I’m so happy I found this video 😭

Most people are asymptomatic, but I wasn't so lucky. When I was infected, I woke up feeling like I had been hit by a truck. I couldn't eat a cracker without projectile vomiting. Eventually my tonsils and lymph nodes in my throat swelled up so badly I could barely breathe. After I was diagnosed, they told me to go home and get rest and cancel my plans. I shut off my alarm clock since I was still in school and went to bed. When I woke up, two and a half days had passed. I was so weakened I could barely stand and it took about 2 months to feel normal and 6 months to regain the weight I lost. Probably the only time in my life I thought I was going to die.

We need an update. This was 4 years ago. Still no vaccine.

My story exactly..every year I get lymph nodes so inflamed and measuring around 4c.m they take them out thinking it's cancer. Well again another inflamed one causing me to be very sick, like the rest. Dr said after core needle biopsy came back as showing signs of something wrong, we could take it out. I told him no, I want to know why this keeps happening. Sent me to an oncologist (my 3rd one) who did bloodwork for EBV and found I have CAEBV. Finally some answers! Been living this nightmare for 11 years. I didn't get mono as a teen. I was around 42 when we figure what they thought was severe strep throat was probably actually mono.