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.

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

Hi Kristina! Definitely locate a good hematologist even if you have to travel. Have you had a flow cytometry test and a EBV Quantitative blood test? In my case that, along with a bone marrow biopsies, helped get my diagnosis. A year ago I ended up getting four infusions of Rituximab and am in remission from EBV+ low-grade B cell lymphoma and now feel great. Hugs and prayers coming your way!

REPLY
@jamienolson

Hello and welcome @kschmoyer9! Wow, what a journey! Thank you for sharing.

I'd like to introduce you to @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus, and I sincerely hope they will return with some more insight.

I'm glad that you have found us and look forward to seeing you connect with others who also struggle with EBV. Supporting and talking about what tips you have for each other is so helpful.

@kschmoyer9, what advice can you share with @cummings3, whose son is 17 and diagnosed with EBV?

Jump to this post

I had Mononucleosis when I was 16 and was very fit. I was hospitalized for dehydration and missed a lot of school. I have never been the same. I had a relapse 22 years later after giving birth to my second child. After followed a very strict healthy diet I was able to get out of bed and return to work for about 5 years. Then I had to go on disability because I was exhausted. Finally I found an MD who diagnosed my Hashimoto’s thyroid problem and pancreatic insufficiency I started to do better but never felt whole. 28 years later I have had my third flare up and am desperately trying to get out of it. I will try the protocol recommended here and let you know how it works. So little progress in all these years. My primary doctor thinks I am just depressed. There has to be an answer!

REPLY

I have been suffering from EBV for 55 years. I have been diagnosed with Mono like 100 or more times
6 years ago, while listening to a lecture I learned about monolaurin. So, I did my own research, then started taking it myself.
From what I understand, monolaurin penetrates the membrane of bacteria and viruses that have a lipid membrane. EBV is one, along with most cold and flu bugs. Needless to say, I have not gotten sick since I began take it.
Do your own research into monolaurin, it is cheap at only $15 a month to keep healthy. I mean $15 a month on its own is not cheap, I get it, but I no longer have to fork out hundreds each month for pharmaceuticals either. So, for me hundreds each month vs. $15, Monolaurin is much cheaper, and I am healthier.

REPLY
@connie125

I have been suffering from EBV for 55 years. I have been diagnosed with Mono like 100 or more times
6 years ago, while listening to a lecture I learned about monolaurin. So, I did my own research, then started taking it myself.
From what I understand, monolaurin penetrates the membrane of bacteria and viruses that have a lipid membrane. EBV is one, along with most cold and flu bugs. Needless to say, I have not gotten sick since I began take it.
Do your own research into monolaurin, it is cheap at only $15 a month to keep healthy. I mean $15 a month on its own is not cheap, I get it, but I no longer have to fork out hundreds each month for pharmaceuticals either. So, for me hundreds each month vs. $15, Monolaurin is much cheaper, and I am healthier.

Jump to this post

I have taken that before when diagnosed with auto immune diseases and had forgotten about it when I reached a better level of health and my integrated medicine Dr. Told me she couldn’t help anymore. I still had not reached my pre EBV energy levels. I’m still looking for that muscle strength and energy restoration. I never caught anything else while I was on the Monolaurin either.

REPLY
@brendagail

I have taken that before when diagnosed with auto immune diseases and had forgotten about it when I reached a better level of health and my integrated medicine Dr. Told me she couldn’t help anymore. I still had not reached my pre EBV energy levels. I’m still looking for that muscle strength and energy restoration. I never caught anything else while I was on the Monolaurin either.

Jump to this post

I am curious, why did you decide to stop taking the Monolaurin?
When I learned that my Step-mom stopped taking it, she said it was because she was not getting sick anymore so she does not need it.
By the way, I also have multiple autoimmune issues, Hashimotos, and Mixed connective tissue disease are the worst of them. To me, while I know that monolaurin will not cure these autoimmune issues, not getting sick from other viruses or bacteria for that matter is still a huge benefit.

REPLY
@connie125

I have been suffering from EBV for 55 years. I have been diagnosed with Mono like 100 or more times
6 years ago, while listening to a lecture I learned about monolaurin. So, I did my own research, then started taking it myself.
From what I understand, monolaurin penetrates the membrane of bacteria and viruses that have a lipid membrane. EBV is one, along with most cold and flu bugs. Needless to say, I have not gotten sick since I began take it.
Do your own research into monolaurin, it is cheap at only $15 a month to keep healthy. I mean $15 a month on its own is not cheap, I get it, but I no longer have to fork out hundreds each month for pharmaceuticals either. So, for me hundreds each month vs. $15, Monolaurin is much cheaper, and I am healthier.

Jump to this post

Hi,

What brand of Monolaurin do you use?

REPLY
@blaira

Hi,

What brand of Monolaurin do you use?

Jump to this post

I have been using the Solaray brand for 6 years now
I know that the lauricidin brand is considered the gold standard, but it is way out of my price range

REPLY
@connie125

I am curious, why did you decide to stop taking the Monolaurin?
When I learned that my Step-mom stopped taking it, she said it was because she was not getting sick anymore so she does not need it.
By the way, I also have multiple autoimmune issues, Hashimotos, and Mixed connective tissue disease are the worst of them. To me, while I know that monolaurin will not cure these autoimmune issues, not getting sick from other viruses or bacteria for that matter is still a huge benefit.

Jump to this post

I stopped it because I had improved a lot. Also, I was taking a lot of supplements and paying out of pocket for a functional medicine doctor and my husband was very stressed about all the costs over the years. I had been to a nutritionist and homeopathic doctor at first and he got me out of bed with a very strict diet but missed the EBV component and the low digestive enzyme levels. I really didn’t know which supplement was doing what and then my fm doctor retired.

REPLY
@lovelovelove

To all, I don’t know if this is current and I hope many of you have improved.
I am not a healthcare professional but I found that lauricidin is excellent antiviral (it is my favorite brand but you may choose others. I just trust them. Don’t order on Amazon, we never know where they keep their stuff.). If you decide to give it a go, talk to your doctor about it, make sure you’re not allergic to ingredients and start very slowly. Ignore all dosage advice. Start with one pellet and build it very very slowly . Back down if you feel discomfort. Take your time.
Elderberry and lemon balm are also very good tinctures for EBV.
This must be tackled from all angles through diet and taking supplements. Vit D might be helpful.
Support your body when you try and kill this: you want things to move fast because it is good at creating autoimmunity. There is a lot of info out there about reasonable alternative options to support your body with EBV and keep things moving.
Stress must be managed.
Mostly I would give Lauricidin a shot.

Jump to this post

Diet changes helped me a lot. No gluten, dairy, soy, corn or sugar of any kind. I have also chosen to exclude anything with lectins. Also, organic as much as possible. It’s hard at first but it got me out of bed and back to work for a few years. It’s been a 28 year battle. Also, if you have any thyroid antibodies you need replacement and get you digestive enzymes checked. EBV cause pancreatic insufficiency.

REPLY

I know what you mean about expenses
I am hanging by a thread here myself

REPLY
Please sign in or register to post a reply.