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slow journey, but it gets better- EBV

Posted , 4 users are following.

Izzy233
Izzy233

Hello!

I’ve been wanting to post for a bit now. This page was such a comfort to me when i needed answers and support. i am 24 and got sick last December and it took about 9 weeks to find out it was EBV. I had all the symptoms mentioned on here to a severe level. Countless ER trips, specialist visits, could not breathe for months(this was horrible), intense migraines, excruciating stomach pain, fatigue, panic attacks non-stop, vision issues, De-realization. It was truly the worst thing I’ve ever experienced- I felt like my body was shutting down. if you click my name it should show some of my past posts/comments. BUT… almost a year later I am doing so much better. I wanted to post this for anyone who thinks this is never going to end or who thinks mono can’t possibly be what’s causing this. I have a job, a puppy, and an almost normal life again. I still struggle with some symptoms such as some fatigue, occasional days where I feel breathless, vision spots, and headaches.. but what used to consume my entire life is the occasional bad day that I can push though. It does get better, and for me it just took alot of time and patience with myself.

2 likes, 8 replies

8 Replies

  • monica25949
    monica25949 Izzy233

    Edited

    this made me feel safe ❤️ i keep having a hard time breathing and it sucks but this gave me hope!! glad your doing better!!

    • Izzy233
      Izzy233 monica25949

      Edited

      Hi monica,

      i remember reading your posts a couple months ago about the breathing and i relate so so much. the breathing was my scariest symptom and I always thought doctors were missing something but it was just this crazy mono. i know exactly what you are going through and i hope you know it will go away, even if it doesnt seem like it!

  • dave46200
    dave46200 Izzy233

    Posted

    Hello,

    This is good to hear

    I got Mono in 2019 (42, male) and it lasted around 6 months.

    Got Covid this July and reactivated EBV almost instantly. It's been one hell of a ride this time with every symptom. I had several tests done and all came back clear. The anxiety this causes is unreal.

    Hoping for better days.

    Dave

    • Izzy233
      Izzy233 dave46200

      Posted

      Hi Dave,

      yes, the anxiety is brutal. i always found myself doubting that mono could really cause all of the insane symptoms but that was exactly it. hang in there, you've got this! better days will come even if it doesnt seem like it.

    • kellydopjo83
      kellydopjo83 Izzy233

      Posted

      i have those thoughts almost all the time and it drives me crazy. i tested after 2 months of symptoms so igm negative, vca igg positive, nuclear antigen postive. at 4 months they test early antigen and it shows mildly positive . at the 18th day mark i was in the hospital and the mono test was negative. i wonder what the window for the spot test is?

  • kellydopjo83
    kellydopjo83 Izzy233

    Posted

    good news izzy. At nine weeks what did your blood work show? positive early antigen?

    • Izzy233
      Izzy233 kellydopjo83

      Posted

      Hi kelly,

      my blood work showed very high levels for recent EBV antibodies which is how my doctor determined i had it- but the active test never showed positive because i was tested for mono too late! i think it is a small window to catch it as active mono

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