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.

Liked by mapchap, pijax, lioness, nacc ... see all

@seehawkeye

The research I read says most people have been exposed to it best most are able to clear it in the US meaning they will not test positive for chronic or reactive EBV. Chronic EBV is considered rare by researchers in the US.

Jump to this post

Thanks seehawkeye! Anything you can provide is greatly appreciated!

REPLY
@seehawkeye

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.

Jump to this post

Hi again,
Could u please explain the CD8+ T-cells?? Thanks!

REPLY

I feel you. My son is 9.5 years old. When he was in the first grade, he fell asleep in class. I took him to the doctor and he tested negative for mono, strep, and flu. We sent him for more tests and he was positive for EBV with levels at 600. Two weeks later his levels were still 550. A month later, minimal change. I took him to several doctors in the interim…endo, neuro, infectious disease, and acupuncturist. The acupuncturist told me he needed to build his immune system and gave me herbs. I went to an immunologist and he ordered more tests than anyone else and he came back with inflammation in the brain. We went back to neuro and did a MRI and sleep test. Turns out he has a neurological sleep disorder that has now been confirmed by Stanford, two different neurologists in Texas. Neuros recommended stimulants. The immunologist put him on keto diet and gave him prescription strength probiotics. He started feeling better within a week or so. We kept to the acupuncture weekly for about 6 weeks. The second we decide he's ok and let him eat normally or stop the acidophilus he has a relapse and sleeps for 30 hours straight. You may want to look up KLS, Klein Levin Syndrome. It is very rare, but it made perfect sense for us. It usually stems from a virus. For us, EBV was the virus. He's now homebound and sleeps 15-20 hours a day but is completely normal for the 5 to 10 hours that he is awake. I am sending you healing thoughts. This is not for sissies. You got this regardless!

REPLY

Can you clarify what the acidophilus is? Is that the prescription probiotic? You really pursued every avenue in your search for answers! I'm so glad you got a diagnosis. All I have been told to do is "eat healthier." So I have been eating so healthy that I'm now almost a skeleton, but I'm certainly not well. I was teaching first grade and had to quit because I couldn't function in the classroom – diagnosis mono which has never left me. I am completely shocked by what these viruses can do to your body, and the lack of knowledge by the medical community on how to treat patients.

Liked by Sundance(RB)

REPLY
@momnxtdr

I feel you. My son is 9.5 years old. When he was in the first grade, he fell asleep in class. I took him to the doctor and he tested negative for mono, strep, and flu. We sent him for more tests and he was positive for EBV with levels at 600. Two weeks later his levels were still 550. A month later, minimal change. I took him to several doctors in the interim…endo, neuro, infectious disease, and acupuncturist. The acupuncturist told me he needed to build his immune system and gave me herbs. I went to an immunologist and he ordered more tests than anyone else and he came back with inflammation in the brain. We went back to neuro and did a MRI and sleep test. Turns out he has a neurological sleep disorder that has now been confirmed by Stanford, two different neurologists in Texas. Neuros recommended stimulants. The immunologist put him on keto diet and gave him prescription strength probiotics. He started feeling better within a week or so. We kept to the acupuncture weekly for about 6 weeks. The second we decide he's ok and let him eat normally or stop the acidophilus he has a relapse and sleeps for 30 hours straight. You may want to look up KLS, Klein Levin Syndrome. It is very rare, but it made perfect sense for us. It usually stems from a virus. For us, EBV was the virus. He's now homebound and sleeps 15-20 hours a day but is completely normal for the 5 to 10 hours that he is awake. I am sending you healing thoughts. This is not for sissies. You got this regardless!

Jump to this post

Wow!! Thx for sharing. I will definitely look into this!!

REPLY
@nataliem

Can you clarify what the acidophilus is? Is that the prescription probiotic? You really pursued every avenue in your search for answers! I'm so glad you got a diagnosis. All I have been told to do is "eat healthier." So I have been eating so healthy that I'm now almost a skeleton, but I'm certainly not well. I was teaching first grade and had to quit because I couldn't function in the classroom – diagnosis mono which has never left me. I am completely shocked by what these viruses can do to your body, and the lack of knowledge by the medical community on how to treat patients.

Jump to this post

Liked by Sundance(RB)

REPLY

I can take a pic of the probiotics when I get home. Acidophilus is the good bacteria. I know the brand is Metagenics and I got the link from the doctors office to buy online. There are also shakes that my son hated so he has the Bio-K yogurt that I buy at Sprouts or Whole Foods. It's pretty expensive but it's easier to have him eat it. I do see a difference when he forgets. The main difference is the quality of life he has when he is awake. He's happier, less lethargic, and completely alert. Before he was like a walking zombie when awake and he was having a hard time connecting the dots. His EBV has remained under 200 ever since we started this in December of 2017. He is still very skinny but he gets his protein and fat macros in most days. I wish you the best!

REPLY
@mrmie

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~

Jump to this post

At that time, he only saw a cardiac specialist

REPLY
@seehawkeye

The research I read says most people have been exposed to it best most are able to clear it in the US meaning they will not test positive for chronic or reactive EBV. Chronic EBV is considered rare by researchers in the US.

Jump to this post

Hi @seehawkeye, I noticed that you wished to post a URL to web resources 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.
– CD8+ T-Cell Deficiency, Epstein-Barr Virus Infection, Vitamin D Deficiency, and Steps to Autoimmunity: A Unifying Hypothesis https://www.hindawi.com/journals/ad/2012/189096/

Seehawkeye, what about this research interested you in particular?

REPLY
@sswonger

Thanks seehawkeye! Anything you can provide is greatly appreciated!

Jump to this post

Apologies for taking so long to get this to you. I was not able to upload files as a new member.

Shared files

AD2012-189096 (AD2012-189096.pdf)

REPLY

Thank you @seehawkeye 🙂
I hope you are well.

REPLY
@kschmoyer9

Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you’re not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn’t stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.

Jump to this post

Do you mind sharing what it was called

REPLY
@rglovesdb

Do you mind sharing what it was called

Jump to this post

@rglovesdb Welcome to Mayo Clinic Connect.

@kschmoyer9's post is from 2017, so you may not get a response.

https://plexusworldwide.com/ This is the supplements they were speaking of.

So that I can connect you will like members, may I ask if you too have epstein barr?

Liked by rglovesdb

REPLY
@erikas

@rglovesdb Welcome to Mayo Clinic Connect.

@kschmoyer9's post is from 2017, so you may not get a response.

https://plexusworldwide.com/ This is the supplements they were speaking of.

So that I can connect you will like members, may I ask if you too have epstein barr?

Jump to this post

I do, thank you.

REPLY
@colleenyoung

Hi @seehawkeye, I noticed that you wished to post a URL to web resources 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.
– CD8+ T-Cell Deficiency, Epstein-Barr Virus Infection, Vitamin D Deficiency, and Steps to Autoimmunity: A Unifying Hypothesis https://www.hindawi.com/journals/ad/2012/189096/

Seehawkeye, what about this research interested you in particular?

Jump to this post

Great article. I need to read it and reread it to fully understand it all

REPLY
Please login or register to post a reply.