Hi. I figured it was time I reach out here because I have felt so alone this year and have been fighting to survive. So far I have not come across anyone who has had the same severe rare complications of ebv and I have yet to find a doctor who can help me, but I hope in sharing my story I might be able to help others and also be able to find someone who might be able to help me. I’m 29 years old and a parent of a 5 year old boy who is dependent on me getting my health back. I contracted ebv in 2008 was always super healthy and never knew why I was sick at the time. In 2013-2014 I relapsed and then I had two great years and then relapsed at the beginning of 2017. The last two times I have relapsed I had very rare acute acalculous cholecystitis related ebv. I almost lost my life to it this year and finally had my gallbladder taken out when it became inflamed along with the virus again. I had jaundice, cyclical vomiting, fevers and chills for months before they figured it out, but there’s only been 16 cases like mine documented so far worldwide so finding a doctor for supportive care following the removal has led to no avail. Everyone tells me getting mono twice isn’t possible and they’ve never seen complications like mine. I got it taken out which immediately corrected the life threatening portion but it’s been almost a year and I’m still fighting it. Ive lost so much weight no matter what I eat, I’ve had severe gastritis with no evidence of pylori for a year now, severe anemia with no apparent cause, I’ve started to develop Terry’s nails and I’m still having high bilirubin come back on my tests. The removal of my gallbladder at least lowered my jaundice and took away the cyclical vomiting, but doctors have not been able to figure out why I keep relapsing or what immune system is causing the severe complications that are persisting. As time went on after I had my gallbladder removed I am where I am at now which is I can no longer walk 30 mins or more without passing out. I’ve tested positive off and on for random autoimmunes. I had low levels of anti-dsdna but no ana levels, my ssa protein was positive only once and then was not positive again, I had low levels of ama m2’s, borderline high RF levels, and high positive cerevisiae ab iga levels. I push myself everyday to try and beat this. I try not to stress over what I cannot change and keep a positive mind since I know that’s important and keeping anxiety and stress levels low are important, but I don’t want this to ultimately beat me and take my life. I still feel I have a fair chance at this but have no idea how to go about it. I have tried doing antivirals, sun therapy, supplementing to keep my body up, but I still feel like I’m in the fight of my life every day. I do hope by sharing this people learn though it is possible to lose your gallbladder to ebv. It happened to me twice only I didn’t catch that it was my gallbladder on my first relapse. I lived with that cyclical vomiting for months which was miserable. I got down to 95lbs. I just hate that there are still so many stigmas attaches to ebv and mono because there is so much that is still misunderstood about it, but I have come to believe in people who are immunodeficient it can have life threatening consequences, yet there are still so few doctors who have any knowledge on it or try to treat it. I was genuinely told good luck by one of the infectious disease doctors I drove hours to see for help. I hope this will bring more awareness to the destruction of this disease.