Treatment for chronic Epstein-Barr virus (EBV)

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!

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.

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

This is from Mayo Clinic on Acidophilus:
https://www.mayoclinic.org/drugs-supplements-acidophilus/art-20361967

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!

At that time, he only saw a cardiac specialist

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?

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

Thank you @seehawkeye 🙂
I hope you are well.

Do you mind sharing what it was called