1. < Infectious Diseases
Profile picture for worriedmom123

EBV - Reactivation / Chronic EBV

Posted by worriedmom123 @worriedmom123, Aug 6, 2023

Hi, My son (17) just got diagnosed with reactive / chronic EBV he is an athlete with dreams of playing in college. He is really struggling, and we cannot find a doctor to help him. This is his test results.
EBV VCA IgG (U/ML)
>750.0
Comments: Above high normal

EBV VCA IgM (U/ML)
< 0.0

EPSTEIN-BARR EARLY AG IgG (U/ML)
20.1
Comments: Above high normal

EPSTEIN-BARR NUCLEAR AG IgG (U/ML)
>600.0
Comments: Above high normal

His DNA PCR was negative.

He is resting and eating healthy with some supplements - a little worried to just start giving him a ton of stuff though. He is 3 months ( or longer) into this reactivation and just getting worse. He had mono in early 2022 and covid / Vaccine.

Worried this is progressing. We are willing to travel just need to find help!

Thanks!

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

Profile picture for d3wilson
d3wilson | @d3wilson | 4 days ago
In reply to @firestorm7 "Hi, new to this chat string. Reaching out for a support group for my son. He..." + (show)
Profile picture for firestorm7 @firestorm7

Hi, new to this chat string. Reaching out for a support group for my son.
He is 21 and has been chronic EBV reactive for at least two years. It has gotten worse this year. We recently did a bone marrow biopsy And thankfully, it came back with no cancer, but we still have the chronic EBV that is just ripping through his system on a daily basis. He has multiple Symptoms on a daily basis in the evening his fever Spikes to 103 with cold chills. His appetite is a hit or miss every day. He has a persistent cough like he has bronchitis, but we know that his lymph nodes in his lungs are swollen and has been. He can’t work and is extremely tired most of the time. He has his good moments and then he has not so great moments, especially when he’s pale. Many times he turns white as a sheet. His hemoglobin is in between 5.3 and I think the highest it has gotten Was 8.0. We’ve had multiple transfusions since March and two hospital stays. When he got the bone marrow biopsy last week, he ended up being sepsis come to find out. It was a surface bacteria that got into his system by way of the insertion of the Biopsy that One through us for a loop.
So basically this next week, we are going to see the oncologist again to see what his options are for the next step. I know that this virus cannot be killed, but something has to give on the symptoms.

Any suggestions or common Situations would be so helpful at this point. My son has no one to talk to that shares the same experience.

Jump to this post

@firestorm7 Im so sorry for what you and your son are going through. I’ve had EEV reactivation since October 2025. I was very sick for a while but starting to feel some improvement with a change in my diet. I eat a lot of fruit, vegetables, and very lean meat. Chicken or fish. I stay away from sugar, greasy or fatty foods, breads or anything made with white flour and I’m starting to feel a little better. My symptoms come and go but I know this diet has been helpful for me. I wish you well on your journey and hope your son starts to feel better soon.

REPLY
Profile picture for momac59
momac59 | @momac59 | 4 days ago
In reply to @firestorm7 "Hi, new to this chat string. Reaching out for a support group for my son. He..." + (show)
Profile picture for firestorm7 @firestorm7

Hi, new to this chat string. Reaching out for a support group for my son.
He is 21 and has been chronic EBV reactive for at least two years. It has gotten worse this year. We recently did a bone marrow biopsy And thankfully, it came back with no cancer, but we still have the chronic EBV that is just ripping through his system on a daily basis. He has multiple Symptoms on a daily basis in the evening his fever Spikes to 103 with cold chills. His appetite is a hit or miss every day. He has a persistent cough like he has bronchitis, but we know that his lymph nodes in his lungs are swollen and has been. He can’t work and is extremely tired most of the time. He has his good moments and then he has not so great moments, especially when he’s pale. Many times he turns white as a sheet. His hemoglobin is in between 5.3 and I think the highest it has gotten Was 8.0. We’ve had multiple transfusions since March and two hospital stays. When he got the bone marrow biopsy last week, he ended up being sepsis come to find out. It was a surface bacteria that got into his system by way of the insertion of the Biopsy that One through us for a loop.
So basically this next week, we are going to see the oncologist again to see what his options are for the next step. I know that this virus cannot be killed, but something has to give on the symptoms.

Any suggestions or common Situations would be so helpful at this point. My son has no one to talk to that shares the same experience.

Jump to this post

@firestorm7
So sorry to you & your son!
I have 2 daughters who have had chronic health issues since they were babies, all around autoimmune diseases that run rampant in our genes! I have had them most of my life but as serious as they are nothing is worse than your kids being sick!!
When I was a teenager I had mono a few times & as a young adult I was told by ER doctors that I had EBV. By the time I was 30 I was diagnosed with Systemic Lupus, Hashimotos & diabetes.
Has your son been tested for autoimmune diseases by a Rheumatologist?
The reason I ask is do many people in my family & support groups for autoimmune disorders have EBV and or mono in their history.
I wish your family healing & some answers soon!

REPLY
1 reply
Profile picture for firestorm7
firestorm7 | @firestorm7 | 3 days ago
In reply to @momac59 "@firestorm7 So sorry to you & your son! I have 2 daughters who have had chronic..." + (show)
Profile picture for momac59 @momac59

@firestorm7
So sorry to you & your son!
I have 2 daughters who have had chronic health issues since they were babies, all around autoimmune diseases that run rampant in our genes! I have had them most of my life but as serious as they are nothing is worse than your kids being sick!!
When I was a teenager I had mono a few times & as a young adult I was told by ER doctors that I had EBV. By the time I was 30 I was diagnosed with Systemic Lupus, Hashimotos & diabetes.
Has your son been tested for autoimmune diseases by a Rheumatologist?
The reason I ask is do many people in my family & support groups for autoimmune disorders have EBV and or mono in their history.
I wish your family healing & some answers soon!

Jump to this post

@momac59 thank you for your response, i really appreciate it. He has been tested for alot but not sure what all it includes. I will check out all his test results and look for that specifically.

Wow it sounds like you have lots of knowledge on dealing with this. My heart goes out to your family.

My son, is the only one who has developed this. Not sure if it was his fathers genes but we are flying by the seat of our pants with this one. I really wish we had a connection to an experienced doctor who has dealt with this. It seems as though westerna and eastern medicine doctors are just guessing at this point!

REPLY
1 reply
Profile picture for momac59
momac59 | @momac59 | 3 days ago
In reply to @firestorm7 "@momac59 thank you for your response, i really appreciate it. He has been tested for alot..." + (show)
Profile picture for firestorm7 @firestorm7

@momac59 thank you for your response, i really appreciate it. He has been tested for alot but not sure what all it includes. I will check out all his test results and look for that specifically.

Wow it sounds like you have lots of knowledge on dealing with this. My heart goes out to your family.

My son, is the only one who has developed this. Not sure if it was his fathers genes but we are flying by the seat of our pants with this one. I really wish we had a connection to an experienced doctor who has dealt with this. It seems as though westerna and eastern medicine doctors are just guessing at this point!

Jump to this post

@firestorm7
Can I ask where you live?
I ask because I myself have been through that before over the years, especially this last spring where I got so sick over 6 weeks, feeling scared & wondering if any Doctor would figure out what was going on with me. 2 different ER’s couldn’t help me after they tested & scanned & prodded & poked. They sent me home with suggestions if I got worse I should come back & wait another 10 hours?? No thanks! They knew I had Lupus but at this point no one knew I had developed a new more serious autoimmune disease; GCA which affects the vascular system, especially in the head. I was in real danger of stroking out or losing my sight. And those other ER’s that did not have the expertise to recognize this discharged me. Very dangerous! I have lost a little sight in my left eye but am grateful I didn’t lose it all.
My husband finally said enough is enough & drove me the almost hour to bring me into the Mayo ER in Phoenix. They admitted me right away.
I feel so grateful that we are closer to One of the Mayo locations & they admitted me, promising they were going to keep me until they figured out my medical mystery. And they kept that promise. I have been home, still recuperating but treatment is helping & I feel so much better. They continue to monitor & the care I am receiving is amazing.
Sorry this is so long but if you are able to get to one of the hospitals, Mayo is known for giving hope to people who have complex medical issues. And they are committed to keeping patients until they figure it out in a team with specialists all working together.
May not be possible for you but people come from all over the world to get answers & treatment.
I’m sure there are other good doctors out there but finding them is the challenge.
I wish you much luck getting answers for your son.

REPLY
Please sign in or register to post a reply.