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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sswonger | @sswonger | Sep 3, 2020

In reply to @mblack "Yes, it absolutely effects your neurological state along with your body. I finally got one of..." + (show)

Can I as who you saw at Hopkins??

Marianne | @mrmie | Sep 3, 2020

In reply to @sswonger "Where can I find the Chronic Epstein Barr virus discussion or is this it?" + (show)

Hi@sswonger
https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/
Here is a link. Or you can click on my profile and click on any of my comments since they are mostly linked to the EBV discussions. ....~Marianne~

Colleen Young, Connect Director | @colleenyoung | Sep 3, 2020

In reply to @sswonger "Where can I find the Chronic Epstein Barr virus discussion or is this it?" + (show)

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).

@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?

sswonger | @sswonger | Sep 3, 2020

In reply to @colleenyoung "Hi @sswonger, welcome to Mayo Clinic Connect. I thought you and other members like to have..." + (show)

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.

Marianne | @mrmie | Sep 3, 2020

In reply to @sswonger "Hi, thank you for responding.My husband went to the hospital over a year ago for chest..." + (show)

@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~

sswonger | @sswonger | Sep 3, 2020

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

seehawkeye | @seehawkeye | Jan 20, 2021

In reply to @michellebelle "dquick, Yes my EBV Antigen ab has been over 700 for three years. I keep expecting..." + (show)

Did you have any testing done on your CD8+ T-Cells? Mine are very low and there is research that indicates there is a connection with that and chronic EBV. Risks are autoimmune diseases. I know there is a connection between EBV and lymphoma risk. No connection between EBV and chronic fatigue. If the EBV is bad, only option is blood transfusion therapies and that is an area where research continues. Good luck. I feel for you.

seehawkeye | @seehawkeye | Jan 20, 2021

In reply to @sswonger "Hi, thank you for responding.My husband went to the hospital over a year ago for chest..." + (show)

They may have done the EBV tests because research is showing that Covid-19 can reactivate it. Ugh. I have low cortisol too. I am reluctant to use my meds so I take very little and only when I am sick. Your husband may want to experiment with taking his dosage and splitting it in two. That is what my endocrinologist is having me do. I would suggest he speak with his doctor about it. May help him from running out of steam so to speak.

sswonger | @sswonger | Jan 20, 2021

In reply to @seehawkeye "Did you have any testing done on your CD8+ T-Cells? Mine are very low and there..." + (show)

I will ask him. Not that I’m aware of. Thx!!

sswonger | @sswonger | Jan 20, 2021

In reply to @sswonger "I will ask him. Not that I’m aware of. Thx!!" + (show)

He is taking 50mg per day (20, 10, 10, 20) They also started him on Gabapentin for nerve pain.

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