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Treatment for chronic Epstein-Barr virus (EBV)

Infectious Diseases | Last Active: 4 days ago | Replies (634)

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@mrmie

Hi @smcivor94 . I am sad for what you are going through but am glad you have chimed in on this forum. Obviously I cannot diagnose or treat, but I can share some of my story and what I have learned. My EBV story started around age 21 with a severe case of mono followed by a relapse. So my twenties were spent working part-time and limited social life due to unrelenting fatigue. My thirties went well except for 1 year with a relapse of EBV. I was married, raising a child, and thankfully only working part-time then. Forties started great! Trained myself to run a half marathon, was working out as I did in my thirties, working at a job I loved and BOOM! My EBV was back. I pushed myself through work and that was the only thing I did. I was too exhausted to enjoy weekends or even get groceries. I was getting ready for work on the floor for a few months. Luckily at that point I had a desk job but still was completely exhausting. So I relapsed on a relapse and had to leave my job. Sooo disappointed. But not as disappointed as I was in my doctor. I was having a lot of low cortisol symptoms and was asking her about some tests for my adrenals. When I asked her what she thought about this illness she said one word, "Exercise." Of course I would if I could. I was missing my time at the gym with friends. She actually documented in my chart that "maybe there is nothing wrong.." So I totally hear your frustration with your doctor thinking it is all in your head. They simply are not educated about this stuff. My blood work was "normal" except for active EBV antibodies but the infectious disease specialist ignored that saying, "Anyone can have antibodies to anything. Doesn't mean they have it." .........I know you said you have done a lot of research so some of what I mention you may already know. Have you been tested for EBV? Most adults have EBV in their bodies. However, some of us have a break in our immune system or some sort of stressor and the virus awakens. Stressors can be from our diet, infection, emotional stress, physical stress. Many find help from unconventional doctors such as naturopaths or functional medicine doctors. That may be worth looking into. Cutting processed sugars, caffeine, alcohol, processed foods can be beneficial for the immune system. As far as EBV goes some have been helped with monolaurin, L-lysine, antiviral herbs, antiviral meds (Valtrex), high dose vitamin C to name a few. I assume your doctor has put you on Vitamin D since your level was low. I recommend checking out RawlsMD.com, yourfibrodoctor.com, and ebvhelp.com. I could go on and on...you can check out my profile for some of my other posts that may be helpful for you. The main thing is be your own advocate. It sounds like you are at that point. We all usually end up there once we realize conventional medicine is not able to help us. Don't give up. It is not all in your head. Keep us posted.

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Replies to "Hi @smcivor94 . I am sad for what you are going through but am glad you..."

Thank you for responding @mrmie I am 24 and I have not had an actual diagnosis of mono but I have always suffered from terrible sore throat and acute tonsillitis growing up. Prior to the onset of my current symptoms I was working part time as a waitress (I too have had to take leave) whilst completing my masters degree in law - so perhaps stress may play a part. Although I have not yet been tested for EBV, after researching recently I intend to ask my doctor to do so as many of the symptoms seem to fit my situation to a tee. I can recollect always suffering from fatigue with little ‘get up and go’ in me and finding myself needing a good 8 hours sleep at least! I have taken the liberty of supplementing myself with both vitamin C and B complex to aid my immune function alongside my vitamin D. My sister has confirmed EBV by an endocrinologist I don’t know if genetics can play part in susceptibility to the virus? But it’s certianly something I am looking into in order to get to the root of my health issues. Prior to this onset of illness I was physically healthy, apart from chronic migraines which I believe are hormone related due to my PCOS. Whatever this is it’s definitey viral but I have yet to put my finger on the cause! I’m hoping EBV is the cause just to have some peace of mind and move forward with aiding my recovery! Sorry for the long winded posts but I’ve found this forum extremely reassuring and somewhat comforting to hear people with similar experiences which confirms I am not going mad!