Treatment for chronic epstein barr

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with this 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.

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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@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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Lisa,

I’m glad you shared your story. It is similar to mine in that I am a 63 year old who has been battling chronic EBV for the past six months. I believed I had mono many times in my adult life but just wrote it off as the flu. My blood tests show recent mono infections.
I do know someone who had the UV light treatments over twenty years ago in NYC. She fully recovered, though she wasn’t sure if it was this blood cleansing that cleared it up. I didn’t know they still did this therapy and would love to hear more about it. I don’t know anything about the oxygen therapy but would sure love to get some help with the tiredness. I’ve had a major life style change and would love to get some of my energy back. Where does your doctor practice who is conducting these treatments? No one here including the Mayo and Cleveland Clinic seem to have a treatment plan for this illness. Thanks for taking the time to reach out.

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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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Thank you for your reply as well! I am getting the therapy from a nurse in Phoenix/Tempe Az (I live in Prescott) who is also a Naturopath. Patti Woodridge 602-570-1493 Light Works Photo Therapy. Where ever you live, I would start by calling Naturopath offices to get a referral on who does this treatment near you. I am going to try oxygen therapy soon and will let you know if it helps with energy levels!

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i am in the same boat with my son but now he is 21! We are going back today to get him tested for the 5th time in 3 years. Always tests positive. He does heavy lifting at work and now his spleen is hurting. If someone can help us It sure would mean the world to me. He is too young to stay so run down.

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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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@michellebelle I think the book that is being talked about is “Medical Medium” by Anthony William. Here is a link to his website:
http://www.medicalmedium.com/book
I have not read the book and can’t give any recommendations but if nothing else it may help you learn more about your health condition and that is a good thing. The more we learn, the better questions we can ask our doctors and the better we can advocate for our health and treatment options available.

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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Thanks John.

REPLY
@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.

Jump to this post

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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