1. < Infectious Diseases

Treatment for chronic Epstein-Barr virus (EBV)

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with Epstein-Barr virus (EBV) for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

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smcivor94 | @smcivor94 | Jan 2, 2019

I should also add that I have had a terrible pain in my spine which comes and goes in addition to painful but not swollen glands throughout my body.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 2, 2019

Hi @katlyn57, @smcivor94 and @jeff49 -- welcome to Mayo Clinic Connect. Thank you all for posting here on Connect. @katlyn57 and @smcivor94 in case you missed Jeff's encouraging post, here is a link to his earlier post on what helps him for chronic epstein barr:

-- https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/?pg=20#comment-252745

I'm hoping others will join in and offer suggestions on what helps them also.

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1 reply
Marianne | @mrmie | Jan 2, 2019
In reply to @jeff49 "Hi Marianne I hope you are doing better. The monolaurin when I started it, my understanding..." + (show)
@jeff49

Hi Marianne I hope you are doing better. The monolaurin when I started it, my understanding was that you have to start at a low dose then steadily increase over time. Reason being is that it does kill the virus but your body has to process out the dead cells, if you take too much to begin with I believe you feel worse. thats my understanding. My new Doctor is great, she is sending me vitamins in the mail, I'm a veteran so thats how they come to me but nothing I've taken so far has made any difference that I can tell besides the mononlaurin and the rei-shi mushrooms. I'm not sure what adrenal fatique is but I do have just pure fatique and weakness, I can tell that its coming back slowly, I'm still miserable because my energy is so low. It's also very depressing so my Doc started me on Wellbutrin, I believe its the mildest anti-depressant that I know of and it helps with energy also. It has been about 2 months since I started fighting this disease and I have to say that I'm doing alot better. I actually ran out of monolaurin before Christmas and a week later I'm starting to feel bad again.

I TRULY BELIEVE THAT MONOLAURIN, REI-SHI MUSHROOMS, AND WELLBUTRIN HAS CHANGED MY LIFE!!! Just the other day I was sitting watching tv when I had this really funny feeling come over me...it was a feeling of ENERGY. I haven't felt that in so long that I didn't recognize it at first, and there has been 2 other days that I felt it, one was Christmas Day. I thank God for my new Doctor, she has been great, some Doctors don't think anything is wrong or can't be that bad especially when they can't find anything. She can't find a cure but she is really trying, she could tell that I was at the end of my life that I would have rather been dead then to keep living like that. A few months ago I started a goodbye letter, goodbye to the world because of the misery of this disease. Thankfully I didn't follow thru with it and now I have HOPE again. It's hard to stay positive with EBV but when you start feeling better you will start to have positive feelings again.

GOOD LUCK TO EVERYONE. MAY GOD TOUCH US ALL, AMEN.

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Thanks @jeff49 ...I may try to go back on the monolaurin soon. Adrenal fatigue is when the adrenals are stressed therefore put out less cortisol and other hormones as they should. It is not recognized by conventional medicine. They believe your adrenals are flat out not working (Addison's Disease or secondary adrenal insufficiency or they are working well. There is no in between. Symptoms of low adrenals are debilitating fatigue, hypoglycemia, salt cravings, increased thirst. I have had all of those. I have read in the International Journal of Endocrinology that EBV can affect adrenal function even when the infection clears. ....I'm not giving up. I have filled out onlilne paper work to have a consult with Dr. Rodger Murphree.....Anyway, thank you for your encouraging words and for serving our country!

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Marianne | @mrmie | Jan 2, 2019
In reply to @katlyn57 "Hi, I'm new to this group. I was dx with fibro right after having mono. I..." + (show)
@katlyn57

Hi,
I'm new to this group. I was dx with fibro right after having mono. I was told in Sept '06 I had mono, which as far as I knew, was my first time. I'm 61 now. I started getting over it in Dec, but had a relapse. Late Jan, was still feeling awful so was sent to a rheumatologist who dx me with fibro. It took several months to feel better, but I got back on track. In about 2011 my fatigue and pain got worse and has been that way since. I had type A flu early 2017 and missed 10 wks of work due to terrible fatigue. Got back to work but then noticed more brain fog and making mistakes. More fatigue. No FMLA from May '17 to May '18 due to missing that 10 wks plus time off for vac and people working trades for me. Got FMLA back end of May this year. Got sick with a virus early Oct and am still out from work. I'm thinking my EBV gets going every time I'm ill/stressed. I'm supposed to return to work Sat. My Dr said "you just have to get back on the horse if you get bucked off". My reg bloodwork was all ok. I'm hoping if I ask for the EBV test, he'll do it. All my rheumatologist does is to keep trying to keep shoving higher dosages of Lyrica and Cymbalta at me. I actually don't take the amounts he prescribes, but take as little as possible. Am worried about having to quit my job and trying to afford ins. And disability takes a long time to win. So I'm trying to see what's working for others on here to try a new approach after 12 yrs of fighting for my Dr to hear what I'm saying. I'm going to try an ND. I had one for 15 yrs and she retired, so on to a new one. My daughter and her 18 yr old son seem to have alot of the same issues with her having swollen lymph nodes and terrible pain and him having one virus after another and fatigue and missing 2/3 of high school as straight A student. So we all will have to have our EBV checked.
I'm so happy to have read all of this thread way back for a few yrs! Lots of insight and gives me hope for the future! So tire of being sooooo tired!

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@katlyn57 It sounds like you have the right idea about going to an ND. I am disheartened when I hear comments from physicians like the one you mentioned. It's important to have a conventional doctor, but when it comes to fibromyalgia, CFS, EBV, chronic Lyme, and other mystery illnesses, conventional doctors are not equipped to help. I have yet to come across one that even wants to learn or investigate. You think they would want to find out why an otherwise healthy person doing all the right things they say to do (not smoking, rarely drinking, healthy diet, exercise) would develop a debilitating, life-altering illness. Sadly that is not the case. So we become our own advocates! I know you have read through many posts on here and may have come across some of mine, but he's worth mentioning again. You may want to check out https://yourfibrodoctor.com/ and watch some of his videos. Wishing you the best in this journey! You will be a stronger person because of it!

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Marianne | @mrmie | Jan 2, 2019
In reply to @smcivor94 "Hi, I’m new to here after researching profusely for the last 3 months which I can..." + (show)
@smcivor94

Hi, I’m new to here after researching profusely for the last 3 months which I can only describe has been a living hell. Out of the blue I fell ill with a viral illness (terrible sore throat, excruciating muscle pains, joint pain, fever, neurological symptoms and chronic constipation and an unrelenting bout of thrush - whether this Is related to ebv I don’t know? Has anyone else had similar experiences? Doctors performed numerous tests which revealed chronically low vitamin D, low wbc and negative serologies for HIV and other immune disorders. All other metabolic panel tests came out normal including Thyroid, liver kidney function and iron levels etc. I am at a total loss as my GP has presumed it’s ‘all in my head’ and prescribed me antidepressants and anxiety medication to which I am quite offended!! I am still suffering from ongoing joint pain, debilitating fatigue and body pain which travels to various places each day. I will add that I have PCOS and since this episode I have also experienced worsening symptoms such as a burning pain in my left ovary which is also confusing again, whether it is related I don’t know? Please feel free to share your experiences or offer advice as I simply do not know where to turn and it is really starting to negatively impact my life.

Jump to this post

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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1 reply
smcivor94 | @smcivor94 | Jan 2, 2019
In reply to @mrmie "Hi @smcivor94 . I am sad for what you are going through but am glad you..." + (show)
@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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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!

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1 reply
smcivor94 | @smcivor94 | Jan 2, 2019
In reply to @smcivor94 "Thank you for responding @mrmie I am 24 and I have not had an actual diagnosis..." + (show)
@smcivor94

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!

Jump to this post

Thank you for your guidance and support I shall take your advice on board for sure! @mrmie

REPLY
jbri | @jbri | Jan 2, 2019
In reply to @smcivor94 "Hi, I’m new to here after researching profusely for the last 3 months which I can..." + (show)
@smcivor94

Hi, I’m new to here after researching profusely for the last 3 months which I can only describe has been a living hell. Out of the blue I fell ill with a viral illness (terrible sore throat, excruciating muscle pains, joint pain, fever, neurological symptoms and chronic constipation and an unrelenting bout of thrush - whether this Is related to ebv I don’t know? Has anyone else had similar experiences? Doctors performed numerous tests which revealed chronically low vitamin D, low wbc and negative serologies for HIV and other immune disorders. All other metabolic panel tests came out normal including Thyroid, liver kidney function and iron levels etc. I am at a total loss as my GP has presumed it’s ‘all in my head’ and prescribed me antidepressants and anxiety medication to which I am quite offended!! I am still suffering from ongoing joint pain, debilitating fatigue and body pain which travels to various places each day. I will add that I have PCOS and since this episode I have also experienced worsening symptoms such as a burning pain in my left ovary which is also confusing again, whether it is related I don’t know? Please feel free to share your experiences or offer advice as I simply do not know where to turn and it is really starting to negatively impact my life.

Jump to this post

Beware of doctors who insist that this is all in your head and prescribe antidepressants. I had a similar situation here when I had a severe recurrence of CAEBV (Chronic Active Epstein Barr Syndrome) a few months ago. Fortunately when I lived back east my doctor who diagnosed me had other patients with CAEBV. He knew better than to say it was all in my head.. He also told me that I'd have to find what worked for me in handling the symptoms. Afte3r 20 years that still seems to be true. I have used acupuncture in the past; it helped. I just found a reputable acupuncturist here in Tucson, AZ. While not as fast as I'd like, it is helping. I also am taking Vit D3, Ubiquinol and Vit C. Today I started Monolaurin, suggested by Jeff's doctor ( jeff49 @jeff49 above). Don't give up on yourself. And don't let anyone tell you that the pain and fatigue and lack of energy you are experiencing is all in your head. It's not.

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1 reply
smcivor94 | @smcivor94 | Jan 2, 2019
In reply to @jbri "Beware of doctors who insist that this is all in your head and prescribe antidepressants. I..." + (show)
@jbri

Beware of doctors who insist that this is all in your head and prescribe antidepressants. I had a similar situation here when I had a severe recurrence of CAEBV (Chronic Active Epstein Barr Syndrome) a few months ago. Fortunately when I lived back east my doctor who diagnosed me had other patients with CAEBV. He knew better than to say it was all in my head.. He also told me that I'd have to find what worked for me in handling the symptoms. Afte3r 20 years that still seems to be true. I have used acupuncture in the past; it helped. I just found a reputable acupuncturist here in Tucson, AZ. While not as fast as I'd like, it is helping. I also am taking Vit D3, Ubiquinol and Vit C. Today I started Monolaurin, suggested by Jeff's doctor ( jeff49 @jeff49 above). Don't give up on yourself. And don't let anyone tell you that the pain and fatigue and lack of energy you are experiencing is all in your head. It's not.

Jump to this post

@jbri thank you for your kind words. It saddens me that doctors are unwilling to consider EBV as the cause of chronic illness, especially since it appears to have such a debilitating effect on individual lives. Personally, my life has been affected significantly. I can no longer walk my dog without pushing myself, even getting clothed most days I am ashamed to say takes me great time and maximum effort. I too miss out on a great deal of social events @mrmie due to the constant fatigue. I have medical insurance and intend to go private if my GP is not compassionate upon my next consultation.

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lioness | @lioness | Jan 2, 2019
In reply to @johnbishop "Hi @katlyn57, @smcivor94 and @jeff49 -- welcome to Mayo Clinic Connect. Thank you all for posting..." + (show)
@johnbishop

Hi @katlyn57, @smcivor94 and @jeff49 -- welcome to Mayo Clinic Connect. Thank you all for posting here on Connect. @katlyn57 and @smcivor94 in case you missed Jeff's encouraging post, here is a link to his earlier post on what helps him for chronic epstein barr:

-- https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/?pg=20#comment-252745

I'm hoping others will join in and offer suggestions on what helps them also.

Jump to this post

@johnbishop Have you tried fresh air Golden Milk in ice cube form? How was it ?

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