Treatment for chronic Epstein-Barr virus (EBV)

@lioness Thank you ❤️

@tmccarthy2019 CAEBV and reactivated EBV are sometimes used interchangeably in error. CAEBV is a more severe form affecting multiple organs and can lead to death. It is usually defined with a marked elevation of EBV PCR (DNA). A reactivated form is definitely debilitating but not considered a deadly form. Reactivated EBV is not well acknowledged by conventional medicine. It usually gets ignored or you are simply told to exercise, eat well, and take an antidepressant. For more info and helpful links, check out
http://www.BackToLifeWellness.blogspot.com ...I'm curious as to how you were diagnosed.

It is diagnosed with a BLOOD test. I have Chronic Active EBV and the other CMV (herpes blood virus) that goes along with it (score 189) and my score is 209 for EBV. it is affecting my kidneys, liver, immune system and the vagus nerve in my ear and I have constant ringing in my left ear. It is also affecting my thyroid, and Naturopaths do recognize it. EBV is part of the herpes complex family and it is dangerous past a certain point and is either the result of or part of AutoImmune Disease (mainly Hashimoto's Thyroiditis & Graves).I have HM's and can not take meds for it because of the CAEBV. My doctor is going to prescribe me some Low Dose Naltrexone to try and manage it.

Naltrexone is most commonly used to help prevent alcohol and drug abuse. I personally would not use this drug to help the Epstein Barr Virus no matter what anyone said about it.

I personally have not tried LDN. Now that my EBV IgM is negative, I don't see a point in me pursuing it. I have, however, heard from folks with EBV who say it has helped them. I think it depends on what is really going on in the immune system and if there is a lot of inflammation. This article explains how it works and possible side effects for those who are interested. https://kresserinstitute.com/low-dose-naltrexone-promising-drug-hard-treat-conditions/

I too was diagnosed with chronic Epstein Barr 6 months ago. The first time I knew something was wrong was about 3 yrs ago, I suddenly felt lightheaded and really tired. Now, for the last few months I've been feeling weak, tired, muscles ache, lightheadedness cold sweats etc. Seems like I've seen every doc in town with no help except high dose of vitamin c and d. This condition is ruining my life!

Hi everyone, I'm new here and wanted to say how nice it is to have found you! To hear stories that so closely mirror my own circumstances gives me hope at a time when it seems there's no one in my life, medical providers included, who is able to understand just how difficult things have been for me.

I got sick on Christmas day 2005 (I was 30yo at the time), felt like a typical flu for the first couple of days but then 3-4 ER visits later with no answers and running fevers as high as 103 my fiancee made me go to the ER one last time. Invasive strep infection with infectious mono were finally diagnosed but it was nearly too late as I was already in septic shock. Thank goodness it was caught in time, I spent the night in the hospital was given a mega dose of azithromycin and released from the hospital the next day. That was the extent of it, no follow up, no idea that either of these could lead to long term health problems. My son was born a week, to the day, later (I'm a guy so I didn't have to do any of the hard work or worry about the baby getting sick).

My health was fine for the first couple of years, my kids were getting bigger and I went back to the gym after a few years off, got into really good shape and added a good amount of muscle and strength. I was very vigilant about my diet, rest and was constantly reading research about supplementation. Around 7 or 8 years ago I went to the gym like normal, had a great workout and went home. Everything felt fine until I woke up the next day, I felt like I got hit by a truck and could barely get out of bed. I thought I was perhaps overtraining or not eating enough but no matter how much I rested or ate or how much I cut back at the gym it's like lifting weights turned me into a zombie. Now I get winded by walking up a single flight of stairs, nearly never have energy to do things with my kids or visit with family or friends. My work has suffered, I have a hard time getting to work on time and when I'm there it feels like my brain is running at around 30% for the majority of the day. I recently had to take medical leave for a few weeks and returned to the office last week, the first day or two felt ok but since then the fatigue is back and I have to push myself so hard to get out of the house and am wiped out when I get home.

I feel like I've lost so much but I appreciate all of the things that I'm still able to do. I'm still hoping that I can find something to help me feel better because it's been a steady decline in mood, cognition and energy.

I apologize for writing a book on my first post but a lot of this has been built up inside for so long. Thanks.

Please don't apologize for writing a book! Your story parallels mine in a couple ways . After retiring I felt well enough to start exercising, riding bike, doing the treadmill. For the next few years I increased my cardio to 80-100 minutes a day with no problem. I added going to the gym and lifting as well. I thought I had beaten the EBV beast. But about 18 months ago that began to change. I had a bout of diverticulitis. It changed my diet. I needed starches to baby my digestive tract. I thought I was well enough for a trip to Italy which included a really intense tour. With all that and returning home, jet lag, time change, etc., I felt my body being taken over. By last summer I was beat. I had to give up the gym and much of the cardio. I've gained weight because of the starches as well as the lack of exercise. Yes, I stopped exercising completely because it exhausted me for days afterwards. Now I try to do 3 miles on my bike a day or a 20 minute walk. If I'm not feeling up to it, however, I do not push myself. Really the bottom line is that my body tells me I have no energy with which to push. Let me add one thing: I very much appreciate your perspective. It's positive in the face of the beast. I too still hope I can find something that helps. I wish you well. .

There seem to be many questions and responses in this Discussion about the definition of CAEBV. Let me suggest an excellent 2017 general article about EBV by Jeffrey I. Cohen MD (NIH) and Hiroshi Kimura MD PhD: "Chronic Active Epstein–Barr Virus Disease,"
https://www.frontiersin.org/articles/10.3389/fimmu.2017.01867/full
Read the first five or so paragraphs in the section titled "CAEBV Definition and Features. It also tells you which definitive EBV lab test to have performed and which EBV lab tests not to have performed.

Further down in the article, you also might want to read the section titled "CAEBV in the United States."

Even further down in the article, you also might want to read the section titled "Treatment and Prognosis." As has been stated in other research articles, "patients succumb to their disease if they do not undergo hematopoietic stem cell transplantation."

Hi ! I am brand new and just diagnosed with CAEBV. I am a 62 year old woman and I have been sick with fatigue , fever, malaise and now enlarged spleen and shoulder pain. My blood results are 750 . I feel just awful.

I have joined because I need to have all of your support and your knowledge. I have no idea what to do. Help

Thank you,
Sue