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.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

My adult daughter was just diagnosed with chronic EBV. She has a severe rash right now, suffers from fatigue and never feels well. Thyroid is under active

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@juliemd

Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.

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My daughter read that book and then asked to get tested for EBV, it was confirmed. Now learning how to deal with it.

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Hello @shellr13 and @helpfordaughter - Welcome to Mayo Connect. Thank you for being a strong advocate for your son and daughter. Connect is a good place to ask questions and learn what others with similar health problems are doing for treatments. I’m tagging @clghanimo @jenchaney727 @suesiegel @arriba @copiela @jatl @cheryldotson @cummings3 @aman_23_23, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to offer some more insight.

Here are a few conversations on Connect that you may find useful:
– Chronic Pain members – Welcome, please introduce yourself http://mayocl.in/2tz0bcE
– I just need some answers!!! Please help me!!! http://mayocl.in/2uf42sH

More information from the National Institutes of Health on the Epstein-Barr Virus treatment:

Optimal Treatment for Chronic Active Epstein-Barr Virus Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776035/

I’m not sure if it is an option for you but if you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: https://www.mayoclinic.org/appointments

John

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@juliemd

Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.

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What is 'that book'? It's hard to find the thread of all the conversations. Thanks.

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@juliemd

Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.

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Thanks John.

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@juliemd

Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.

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This same author has a new book out called Thyroid Healing and has more Epstien Barr specific info. The book is about healing through eating healthy foods. Great book but may not be the cure all it claims to be. It certainly makes you want to eat more fruits and veggies which is always good!

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@lisajensen

This is my first time.posting to this site. I am 60 yrs old and have been experiencing chronic EBV after contracting mono about 7 years ago. I just got another big flair up about 6 weeks ago and am ready to try natural suppliments as my doctor's also say nothing can be done. I will start trying several of the ones mentioned here right away! Thank you. I also am getting UltraViolet and Ozone therapy once a week where they hook me up to an I.V. for about 20 minutes and apply UV light and Ozone to my blood stream which is supposed to sort of kill the virus. If you Google the treatment, it is a medical procedure that has been around for years. HAVE ANY OF YOU TRIED IT OR HEARD OF IT? I have had one treatment and have 6 more to go. Also have any of you tried oxygen therapy to help relieve the tiredness and gland swelling such as the type you can get in day spas? My glands are constantly swollen.

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I went to an oxygen bar for the first time yesterday . $20 for a half hour. It helped a lot!! I will be doing this regularly to see how it goes. My next UV Ozone therapy is on Wednesday. Hoping that helps too.

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@juliemd

Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.

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Yes, I did read the book Thyroid Healing and did appreciate the 'diet solution'. I've always had a healthy diet so following his suggestions hasn't been too hard. I just don't do the juicing that was suggested. I'd rather eat 'plants' than drink them. I do drink vitamin water and love my low sodium V8 juice though I'm sure it doesn't have nearly the amount of fresh healthy vitamins that juicing has. I'm always up for suggestions. We all should keep a healthy plant based diet however, I haven't noticed any change due to diet since there wasn't much for me to change.

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@lynnieb1

Cummings3, Yes please keep us posted if this helps. One thing I have learned is it's up to us to find answers to this illness. My son did see a infectious disease dr but he just said to rest and he will eventually get over it. It's been 9 months and he feels the same. No better. I think the bodies immune system thinks it's healed. He is trying an extreme diet to cut out sugar and processed foods, some herb remedies and a colon cleanse. We will see a neurologist next. He has seen an ENT, eye dr, infectious desease dr, internist, allergist, and has had an MRI. Everything come out normal except that he had recent EBV. We will see a neurologist next, his main symptom is extreme fatigue that sleep will not cure, blurred vision and concentration problems. Please keep me posted and anyone else that has advice. I think we are alone in this.

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Hi to you. I’m new to this site and have just recently found EBV to be the cause of symptoms experienced for over 20 years and two boughts of cancer How’s it going?? Could you feel comfortable corresponding thru email?

I’m most interested in your present circumstances and achievements with this crazy
Virus. Thanks so much! Janeen

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@donnamarie

Hello to all. I'm 56 years old. i've had Lyme disease 23 years -not diagnosed until 12 years later. Infectious disease specialist iNY diagnosed me with Chronic Epstein barr. Moved from MY to SW FL 8 years ago. Always positive for Epstein barr and mononucleosis. Have seen a DO/Naturopath 3 hours away since June 2016. I can't find an MD where I live for help. I've been to at least 15-20, including infectious disease. I have been treated as if I'm looking for attention, a s if I'm deceitful, a hypochondriac, that I'm mentally ill and there have been comments and questions about my marriage with my husband sitting right next to me, holding my hand, obviously upset and scared for me. Please don't think that I'm arrogant but I've had to become my own advocate due to all of the above and this is with files of documented evidence of how very sick I am and I know something is very wrong with me.DO doesn't accept insurance, has pushed all of his own products and in house servicest, hasn't helped me, has helped himself to housands of dollars that I can't spare, not going back. I have so many ongoing infectious bacterial and viral, mold toxicity etc but just sticking with Epstein barr. I'm so scared, I need excellent medical care by a kind and patient MD but I don't know where to I turn. I so much want to be the energetic, vivacious woman that I used to be. I don't understand why MDs, family and friends etc would ever think that those of us in this condition are really not sick. And nobody has to tell me or test me to confirm how ill I am, I can feel it inside the body that I have had for my entire life. If anyone can please give me direction I would be so grateful. 2013 memory testing showed decline in cognitive function. Beginning in early 2014 began having black out episodes while driving. December 2014 had to stop working and apply for disability, grateful to God I received it in 6 months. Stopped driving. June 2015 began forgetting episodes in my life, my husband had to stop working because I was falling, losing conciousness, much more. December 2015 became totally exhausted. January 2016 rapid decline, always sick (pneumonia June, July, August and bronchitis 4X). January 2017 stopped being able to take care of my home, can't even walk one block, so tired, so desolate, spend most of my time on the couch or in bed. 2 weeks ago, unable I can't eat anymore, abdominal pain so bad, bloating,. CT scan normal Vomiting began a year ago. Gastro did his tests, his diagnosis I'm nuts. And he knows that I have severe gastroparesis and a serious small bowel to large bowel motility issue.I began entire body shaking about 3 weeks ago, no changes in meds. Also I feel really strange as if something is frightening is happening in my brain. Its hard to explain. My entire body is in pain. I've no stranger to pain but this is different. All my lymph nodes are swollen and I keep testing + for dehydration, among so much more. Difficulty using my hands. EMG testing i2006 abnormal, automatic system testing abnormal 2009. Can anyone please help me? I feel alone and confused. I am seeing my Neurologist next week. He is an excellent M.D. Thank you all for your time & patience.

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Have you tried
Natural remedies and restricted diet. These really help
Plus positive happy thoughts and friends are invaluable!

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