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!

Jump to this post

It is really nice to connect here and read stories similar to mine! I am 57 years old and one year ago contracted Herpes Type II from my long term partner. Since that time I have experienced extreme fatigue, depression, digestive upsets, headaches, myalgia, arthralgia, inflamed lymph nodes, sore throats, low grade fevers. No testing from regular doctors resulted in anything "wrong" with me. In the last 10 years I have had thyroid cancer (in complete remission) and viral meningitis (hospitalized for 2 weeks). I had given up on drs and decided I was probably dying and they couldn't find what was wrong. I regularly thought I would have my children put "I told you I was sick" on my gravestone! Ha ha.
I finally saw a Functional Medicine Physician would dx'd me with Chronic EBV prior to testing me and she was right on the money. Since that time I have been taking LOW DOSE NALTREXONE. There is a book out there you can read about LDN and plenty of websites. It has been working for me; no cure by any means but definitely helps. I also take supplements; N-Acetyl-L-Cysteine, Aller C, VS-C (natures sunshine), 25mg Thyodine, Circum Eval (circumin) and 2k+mg Vitamin C per day (I use rose hips variety), 800 mg Magnesium, 200 mcg Selenium, and 10000iu Vit D daily.
I continue to have good days and bad days. The best advice I have been given is "do not run on adrenaline". I am working on regulating my days to include small walks daily (I used to be a very active athlete, but over the years have just not had the energy), standard bed times and rising times, and learning not to expect too much of myself. There are days when I sleep 14-18 hours. I am working on paying attention to what my body needs. I switched over last year to a Vegan diet (not perfect at it but generally am). I found I cannot tolerate dairy (especially cheese and yogurt), lots of breads (try to minimize or eliminate all together), and simple starchy foods (such as white potatoes). I still use some sugar but miminally. I eat a lot of black beans and chick peas and tons of veg. When I keep my diet this way, I feel better and have more energy and less bad days. If I keep a regular schedule and go to bed around 9pm, rising around 6-7am, I do ok. If I need a nap in the middle of the day I take it. If I had a regular job I would be BROKE, but I work for myself and so I am able to continue to make a living without having to go to an office every day. I do travel for work and find that I have to limit the number of clients I see in a day and when I am more than 200 miles from home I choose to stay in hotels.

Jump to this post

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

Glad I found your story hippiechic! I just discovered I have Active EBV and like you almost lost faith in dr.s and wondered who I could talk with for help. Think I'll look for an FMP in my area

Jump to this post

I feel your pain. It’s beyond frustrating and had EBV on and off the last 2 years. ID doctor told me ‘nothing she could do’
I’m responding because I have gotten massive relief from two things. I started a diet protocol with Anthony William to kill off all EBV virus. Plus I started Asea redox molecules which finally had brought my energy back after 2 years. Not the version on amazon that is questionable. My girlfriend sent me a case from Asea Global. It’s made all the difference. If you are interested for your son just let me know.
God Bless

Jump to this post

@suewilliams64 Mayo Connect is open to many traditional and supportive alternative medicine therapies. That said, it is very important to be sure recommended products have shown effectiveness in impartial testing.

Can you provide any independent sources that support use of ASEA Redox, or certify the safety of the ingredients ? Everything I find leads directly back to their commercial websites.

Sue

Jump to this post

Hi all -
I think my original post was edited out. Traditional medicine does not believe in cure. Not really cure, but extremely effective "containment" of EBV.
Astra Isatis (herbal combo) Lysine and Monolaurin. Give it 10 days.

I am 76 years old. I still ski, climb hills, work full time, and enjoy life. What a change from 10 years ago! I was virtually handicapped from decades of EBV reactivation. A wonderful teaching naturopathic doctor at Bastyr University took one
look at my old labs and said everyone had been misreading my ANA's ---- I didn't have lupus, I had an EBV reactivation. I was at 3,533 on one my tests,
where I should have tested around 30. Astra Isatis is available on line, so is monolaurin, and lysine is available almost everywhere. Sad thing is that
even after ten years, my GP and other docs (one of whom ran the test for me as directed by the naturopath so my insurance would pay for it) still don't
acknowledge the EBV in anyway. It's always the elephant in the room. They run their own tests, which always come back negative! I've taken this
protocol for 10 years and will take it the rest of my life. Do NOT take anything with arginine in it! While it's wonderful for temporary energy, my understanding
is that it dissolves the "capsule" that contains the virus and allows it to reactivate. Over simplification, I'm sure - but be careful.

The lysine is cheap. I take 1,000 mg a day. Astra Isatis in not cheap - about $50 for 270 tablets and I take 2 twice a day. Momolaurin around $40 and I take it twice a day. I can get by without the monolaurin once I get the virus in remission, but if I think it's acting up again, I have to take it faithfully. Insurance pays for none of it, but it's worth it's weight in gold to feel good. Good luck to all!

Jump to this post