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Rare Ebv complications

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.
6 Responses
Avatar universal
Hi I've suffering probably from ebv 20 years already but just recently one doctors sugest this diagnosis. My nails are definitely  Terry’s nails and I have high bilirubn level for years but nothing wrong with my goldblader. I have no autoimmune except Hashimoto but my hart is failing. I've got aneurysm and I think all my arteries and wains are inflame more or less. I'm scheduled for hart surgery but I'd like to have diagnosis first.
1 Comments
That is what has been happening to me. My heart has started to show signs of failing. I started producing BNP and my heart hdl has gotten super low. I did get good news this last weekend though and my ebv is finally in remission but i know I’m still dealing with convalescence of the infection. It can take a long time for that. I believe the longer you have it and the longer my body is fighting it the harder it is. Have you had your clot times tested? I noticed whenever my ebv is flared my clot disorder is compromised even more. The only thing I’ve found that has helped me go into remission is coconut oil.
Avatar universal
It cut out my comment so I had to start a new one. I can’t say for sure if it is the coconut oil that has helped, but both times I’ve relapsed whenever I’ve done coconut oil I finally made improvements. I had read about it and I was out of other ideas so I gave it a try. A tbl spoon a day. I hope you beat yours, but I wouldn’t put your issues past being ebv related and any co-infections will put you at higher risk for complications. I’ll be praying for you but if you need any help or someone to talk to as you go through this I’m always here.
Avatar universal
IAlso have you been checked for cirrhosis or any autoimmunes? That sounds very similar to either and that was my issue. They believe the ebv triggered pbc or autoimmune cirrhosis which can cause Terry’s nails and the heart problems and blood issues.
1 Comments
So I did have a liver scan and it was an f-1. I also found out later after my original post that when they went in to do the surgery my biliary ducts were strictured. I’m working with a hepatologist but he’s still saying my high bilirubin is probably a processing disorder of the bilirubin and he doesn’t think it’s PBC. Im on the same page as you. I think the ebv triggered it, but I’m not sure how after all the evidence of biliary issues how he can still brush it off to being just a bilirubin processing disorder. Bilirubin disorders don’t cause you to get biliary strictures
Avatar universal
I had ebv approx last August, I think it was. Seem to have got worse as time has passed. I’m really sorry to read what you’re going through.  There are a group of drs in the US promoting an scientifically evidence based whole foods, plant based no oils diet. This is irrelevant but the reason I mention them is I have a certain amount of trust in them. What I didn’t trust so much is when they were involved in a conference on their subject and one of the speakers was a medical psychic medium. Credibility plummeted for me personally, but many others don’t feel the same, so I thought, given the desperation evident in your post, that you may be interested in knowing he has written a book that includes claimed information on ebv residing in the body and how to overcome problems from it. I say this urging caution and researching him first, or you may feel at this stage you have nothing to lose. I can’t remember the guy’s name, but google medical medium ebv and it should come up. I’ve been too muddle headed to do anything about researching it myself, sorry.
1 Comments
I commented it below in the other reply. Thank you so much for your time and extremely kind thoughts. May I ask btw what conference this is? I’d actually love to attend one
Avatar universal
Read the book Medical Medium Thyroid Healing: The Truth Behind Hashimoto’s, Grave’s, Insomnia... May William Anthony. It’s all about the stages of EBV-a virus that, once contracted, never goes away but can be managed.
1 Comments
So I did look into him as I came across it in my hundreds of hours of research. Apparently his reviews were paid though. I found the real reviews of him and they were not very good. Although I will say he has pin pointed how destructive the disease can be and how it hosts. I finally got some results on my immune panels. It seems I have such severe relapses that either have to do with immunodeficiency or the mono caused me to develop acquired immune system issues. I’m still waiting to find out more. I was an f-1 on my liver scan and my immunoglobulins were all low along with my complement system. What a hell of a virus. When I used to hear people talk about mono I never gave it much thought, now I cringe in absolute fear any time someone brings it up. My immune system is still compromised so I’m still in the fight, but god I will be thankful when I survive this.
Avatar universal
Kasia Kines just wrote a book on overcoming EBV.  You can also take monolaurin instead of eating coconut oil.  
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