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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kittykiernan | @kittykiernan | Aug 18, 2019
In reply to @ethanmcconkey "Hi @kittykiernan and @34micasita welcome to Connect. @kittykiernan you may have noticed I moved your post..." + (show)
@ethanmcconkey

Hi @kittykiernan and @34micasita welcome to Connect. @kittykiernan you may have noticed I moved your post to this existing discussion on Chronic EBV so that you can connect with others who have similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

What both of you are going through must be so frustrating as you continue to have new symptoms arise.

I'd like to tag fellow Connect members @airsleeper @mrmie @momnxtdr @dcbrenek and @lioness as they have experience with Chronic EBV and they may be able to offer you support.

Back to you @34micasita do you mind sharing more about your stomach issues?

@kittykiernan how long untill you go to your new doctor?

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Ok great..It is a awful illness and I have no idea when I’ll be able to get in...

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Marianne | @mrmie | Aug 19, 2019

Hi @kittykiernan What you were going through is difficult. My story is a little different but similar in that I could no longer take care of myself and had no help from conventional doctors. Here is a website that may be helpful. Kasia Kines PhD has a passion for helping those with EBV. She provides lots of information in her book and website. ebvhelp.com

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1 reply
kittykiernan | @kittykiernan | Aug 19, 2019
In reply to @mrmie "Hi @kittykiernan What you were going through is difficult. My story is a little different but..." + (show)
@mrmie

Hi @kittykiernan What you were going through is difficult. My story is a little different but similar in that I could no longer take care of myself and had no help from conventional doctors. Here is a website that may be helpful. Kasia Kines PhD has a passion for helping those with EBV. She provides lots of information in her book and website. ebvhelp.com

Jump to this post

Thank you. I’m am starting to not be able to take care of myself. There are doctors that are saying insane things things about me making up psychiatric issues I have never had, putting things on my charts that I have never had. Are you better? I will look now , it’s nice she has a book but I need help. Does she take patients?

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1 reply
Marianne | @mrmie | Aug 19, 2019
In reply to @kittykiernan "Thank you. I’m am starting to not be able to take care of myself. There are..." + (show)
@kittykiernan

Thank you. I’m am starting to not be able to take care of myself. There are doctors that are saying insane things things about me making up psychiatric issues I have never had, putting things on my charts that I have never had. Are you better? I will look now , it’s nice she has a book but I need help. Does she take patients?

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Yes I believe she works with people long distance. I have had doctors chart things that were not helpful in my records as well --- such as " have you ever considered that maybe there is nothing wrong?" I can only laugh at that!! Anyway, yes I am doing much better I am hoping to get back to work next year. I have been working with Dr. Roger Murphree since January. He is specialized in chronic fatigue syndrome and that is basically what I have.

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Marianne | @mrmie | Aug 19, 2019
In reply to @34micasita "I am a 48 year old woman who had Epstein-Barr Virus when I was 19 yrs..." + (show)
@34micasita

I am a 48 year old woman who had Epstein-Barr Virus when I was 19 yrs old. I dropped out of college so many times that eventually I gave up. From this virus I have developed Mitral Valve Prolapse. I have a friend who's son contracted Leukemia as a direct correlation from this auto-immune disease. I have suffered bouts of chronic fatigue, depression, anemia, low-blood cell counts, and now stomach issues and possible Diabetes. This disease has haunted me like an evil specter and I am so tired of seeing arrogant doctors who know diddly-squat about this disorder and think all woman are just hysterical drama queens. I am so fed up I don't lknow what to do. I called my insurance today and was told they have ENT-Immunologists but no Immunologists participating in my plan. WTF do I do ???????

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Hi @34micasita Your story sounds similar to mine. What you are going through is difficult -- understatement!
Here are some links that may be helpful. http://www.ebvhelp.com
You can also check out my blog. http://www.BackToLifeWellness.blogspot.com
Use the search box for my posts on EBV, and Tips For Dealing With a Chronic Illness. Wishing you well soon!!! .....Marianne

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kittykiernan | @kittykiernan | Aug 20, 2019

Thank you for the resources. I just can’t function no one will help me. I feel like I’m going to die. I’ll look at everything I’ll do anything to get better I’m scared I might have cancer from it I have the brca cancer gene. This is the worst thing that could happen to anyone and no one gets it...

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mblack | @mblack | Aug 29, 2019

I contracted EBV in 2015 from someone in the gym I was going to. I went from being in the gym every day to barely being able to move. This all happened one month before I turned 40 so I caught it late and it took months of doctor visits to get that much. As things progressed I was diagnosed with CFS. Fifteen months ago I ended up in the ICU and since then I literally feel like I've been poisoned, that's how bad I feel on the inside. I feel like my mind is gone, my pain is debilitating, dry eyes, stomach and digestive problems, neuropathy in my feet, mouth issues, can't deal with temperature changes, cold hands and feet but sweating,oversensitive nerves, sinus infections that antibiotics couldn't touch so I had to have sinus surgery and the list goes on. Now after numerous ER visits and about 15-20 specialists I've been told it may be Chronic EBV but now my bloodwork is showing an autoimmune disorder and this was only after I told them to test me for it. It looks like a reactivation that does not go away. The problem with this illness is Doctors DO NOT know about it. I'm scheduled for an endoscopy in two weeks then onto the infectious disease doctor. I'm to the point that I am so miserable that I enjoy nothing. I've tried to read as many of the posts as possible and it seems like we all have the same issues of varying degrees. Has anyone had luck with Anti-Viral meds or anything else?

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3 replies
michellebelle | @michellebelle | Aug 29, 2019

If you haven’t already, become a member of Facebook’s EBV group and read, read, read everyone’s posts. I learned a great deal and followed nutrition, treatment and activity advise. There was so much to learn. I’m doing better after two years of following suggestions. I didn’t have a single doctor who knew enough about this illness. I had to request my doctor write me scripts for what I heard worked for others.

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1 reply
kittykiernan | @kittykiernan | Aug 30, 2019
In reply to @ethanmcconkey "Hi @kittykiernan and @34micasita welcome to Connect. @kittykiernan you may have noticed I moved your post..." + (show)
@ethanmcconkey

Hi @kittykiernan and @34micasita welcome to Connect. @kittykiernan you may have noticed I moved your post to this existing discussion on Chronic EBV so that you can connect with others who have similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

What both of you are going through must be so frustrating as you continue to have new symptoms arise.

I'd like to tag fellow Connect members @airsleeper @mrmie @momnxtdr @dcbrenek and @lioness as they have experience with Chronic EBV and they may be able to offer you support.

Back to you @34micasita do you mind sharing more about your stomach issues?

@kittykiernan how long untill you go to your new doctor?

Jump to this post

I have no money to see a doctor

REPLY
kittykiernan | @kittykiernan | Aug 30, 2019
In reply to @mblack "I contracted EBV in 2015 from someone in the gym I was going to. I went..." + (show)
@mblack

I contracted EBV in 2015 from someone in the gym I was going to. I went from being in the gym every day to barely being able to move. This all happened one month before I turned 40 so I caught it late and it took months of doctor visits to get that much. As things progressed I was diagnosed with CFS. Fifteen months ago I ended up in the ICU and since then I literally feel like I've been poisoned, that's how bad I feel on the inside. I feel like my mind is gone, my pain is debilitating, dry eyes, stomach and digestive problems, neuropathy in my feet, mouth issues, can't deal with temperature changes, cold hands and feet but sweating,oversensitive nerves, sinus infections that antibiotics couldn't touch so I had to have sinus surgery and the list goes on. Now after numerous ER visits and about 15-20 specialists I've been told it may be Chronic EBV but now my bloodwork is showing an autoimmune disorder and this was only after I told them to test me for it. It looks like a reactivation that does not go away. The problem with this illness is Doctors DO NOT know about it. I'm scheduled for an endoscopy in two weeks then onto the infectious disease doctor. I'm to the point that I am so miserable that I enjoy nothing. I've tried to read as many of the posts as possible and it seems like we all have the same issues of varying degrees. Has anyone had luck with Anti-Viral meds or anything else?

Jump to this post

Oh so we feel alike. Interested what immune did you find? For the drs to test? Unreal we have to tell them

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