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.

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@colleenyoung

Hi @sswonger, welcome to Mayo Clinic Connect. I thought you and other members like to have an inventory of the discussions related to Epstein-Barr Virus (EBV).

– Seeking treatment and evaluation https://connect.mayoclinic.org/discussion/seeking-treatment-and-evaluation/
– Dual Diagnosis of CLL and Acute Epstein Barr Virus – https://connect.mayoclinic.org/discussion/dual-diagnosis-of-cll-and-acute-epstein-barr-virus/
– Relapsed CNS Primary Brain Lymphoma – Linked with Epstein-Barr Virus? https://connect.mayoclinic.org/discussion/relapsed-cns-primary-brain-lymphoma-linked-with-epstein-barr-virus/
– Is chronic reactivated EBV different from chronic active EBV? https://connect.mayoclinic.org/discussion/is-chronic-reactivated-epstein-barr-virus-different-from-chronicle-ac/
– Treatment for chronic epstein barr https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/
– Doctor Recommendations for Chronic active Epstein Barr virus (CAEBV) https://connect.mayoclinic.org/discussion/ebv-chronic/
– Epstein Barr Nuclear AG AB IGG result of over 600 https://connect.mayoclinic.org/discussion/epstein-barr-nuclear-ag-ab-igg-result-of-over-600/
– Diseases caused by Epstein-Barr Virus https://connect.mayoclinic.org/discussion/epstein-barr/
– Whether or not to treat epstein barr symptoms https://connect.mayoclinic.org/discussion/whether-or-not-to-treat-epstein-barr-symptoms/
– Chronic EBV – Help https://connect.mayoclinic.org/discussion/chronic-ebv-help/
– EBV? or Adrenals? https://connect.mayoclinic.org/discussion/ebv-or-adrenals/
– Chronic EBV: to go or not on a trip? https://connect.mayoclinic.org/discussion/to-go-or-not/
– Traveling with Chronic EBV. Any tips? https://connect.mayoclinic.org/discussion/traveling-with-chroniv-ebv-tips/
– EBV functional doctors on Skype https://connect.mayoclinic.org/discussion/ebv-functional-drs/
– What / how to test for reactive or chronic Ebstein Barr https://connect.mayoclinic.org/discussion/what-how-to-test-for-reactive-or-chronic-ebstein-barr/
– My 7 year old has EBV and TB https://connect.mayoclinic.org/discussion/my-7-year-old-has-ebv-and-tb/
– EBV – How do you stay healthy? https://connect.mayoclinic.org/discussion/ebv/

@sswonger, I also noticed that you wished to post a URL to a web resource with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.

A prospective study of Epstein-Barr virus antibodies and risk of non-Hodgkin lymphoma http://www.bloodjournal.org/content/bloodjournal/116/18/3547.full.pdf

sswonger, do you have EBV? Has it developed into non-Hodgkin's lymphoma?

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Hi, thank you for responding.My husband went to the hospital over a year ago for chest & abdominal pain. From a CT they found a pseudo-aneurysm which they placed a stent. From lab results it was found that his gall bladder was only functioning at 10%. They removed gall bladder.
He has not been right since. He has been to Cardiac Dr’s; his heart is fine. He went to a Endocrinologist who couldn’t find anything wrong. Finally saw a Neurologist who ordered the EBV tests.
Positive for virus but not active. He went from being pretty active & able to fix anything in the house to barely functioning after 10am. Since CoronaVirus, he has been able to work from home. They have him on oral hydrocortisone due to secondary adrenal
insufficiency. As soon as it wears off his symptoms return. They also prescribed Cymbalta for nerve pain.
The Dr today Said there were no more tests she could perform. Is this it?? He is only 56.

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@sswonger

Hi, thank you for responding.My husband went to the hospital over a year ago for chest & abdominal pain. From a CT they found a pseudo-aneurysm which they placed a stent. From lab results it was found that his gall bladder was only functioning at 10%. They removed gall bladder.
He has not been right since. He has been to Cardiac Dr’s; his heart is fine. He went to a Endocrinologist who couldn’t find anything wrong. Finally saw a Neurologist who ordered the EBV tests.
Positive for virus but not active. He went from being pretty active & able to fix anything in the house to barely functioning after 10am. Since CoronaVirus, he has been able to work from home. They have him on oral hydrocortisone due to secondary adrenal
insufficiency. As soon as it wears off his symptoms return. They also prescribed Cymbalta for nerve pain.
The Dr today Said there were no more tests she could perform. Is this it?? He is only 56.

Jump to this post

@sswonger Here is a link that may be helpful in answering questions about EBV.
https://ebvhelp.com/
It doesn’t surprise me he tested positive for the virus. Almost all adults have been exposed to EBV and will have positive EBV IgG antibodies. EBV IgM antibodies indicate it is active.
If he is feeling worse after the hydrocortisone wears off, it makes me wonder if it’s the adrenal insufficiency acting up due to all the stress he went through over a year ago. I’m no doctor and can’t advise on that. What I can say is don’t give up!!! Keep searching the best you can.
~Marianne~

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Thank you, Marianne. I may write to you again! Next stop on this train is Cleveland Clinic

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