Mono, but not mono and now my life sucks
TLDR: I tested positive for mono last april, then it came back in august which it isn't supposed to do, then I got tested again in March because I was symptomatic again, and thankfully tested negative, but the doctor did another more specialized test -- and looked for the EBV virus -- it wasn't there. I repeatedly have bouts of illness now and I don't know what fucking virus I had or why it triggered positive on the mono spot test.
putting tldr above for anyone lazy and here are the deets:
I got mono last April and it was brutal. Lasted a month. had severe fatigue, fever, headaches, and at the very end of it, had the bad sore throat and white pus on my tonsils. I was so miserable at the end no amount of tylenol helped me sleep and i was just mouth breathing in sufferance. But it lasted a full ass month and I had to go to the ER and that's when they did the first mono spot test and I tested positive. So as one does, I assume I have mono because I supposedly have mono and it feels like mono and seems like mono.
Except then I tested positive for mono again in August after a bout of a will-not-be-named horrible throat disease that was my own fault. And I was confused because I didn't think mono could come back. Why would mono come back? And I proceeded to have some mono symptoms and enough mono symptoms that I apparently infected some guy I was dating at the time ALSO WITH MONO so the mono virus was back and active and fucking people up (yes I talked to that guy, we're chill, he holds no hard feelings, I didn't know).
After that, I repeatedly had moments where I'd wake up with my tonsils all swollen again and all fucked up and feeling sick and I didn't know why. I eventually went to another doctor one of these times that I was really messed up and this doctor said I'll do a mono spot test but I'll also do a more in depth test that actually looks for the EBV virus and checks how much of it is active versus inactive. She did that test and said a) I did not test positive for mono on the spot test (woo but I'm still in pain) and b) there is no EBV virus.
None???? Like none. And I clarified and she said there's no way you could have EVER had the EBV virus in your system. And this kind of makes sense because mono isn't supposed to come back and the doctor who told me I tested positive again in August said at the time (different doctor) that I couldn't re-contract the same mono and that it was super unlikely that I could have gotten mono twice because you're not supposed to be able to get it again. And I thought that too and because of the throat virus thought that that could have triggered some virus that was dormant (eg. EBV) to reactivate. But now I don't even have EBV in my system and I'm concerned.
I ended up going to an ENT who gave me some treatment regimen to just deal with my tonsils when they act up and deal with the other issues when they happened. I asked about the mono/not mono thing. He said yeah no matter what the virus they still kinda call it mono and they likely won't find out what virus I had. But I'm concerned because like I said, I'm having continued problems and even this regimen isn't solving them. I've been having repeated flare ups for the past year and a half and my tonsils hurt now too and I don't know if it's possible this other weird virus fucked my immune system or something?
Anyway, has this happened to anyone before??? What other viruses could cause mono?? Help???? Did anyone have permanent immune damage from mono???? I don't know what to do because I keep going to doctors and not getting help or any clarity.