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.

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@airsleeper

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short...I've also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can't remember everything else. I've noticed from the recent posts I've read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I'm wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I'm concerned that no better treatment is known and that
This will be a waste of my time and money...which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

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Hello AirSleeper there is a doctor called Dr. Jill the sleeping giant who helps with EBV I hope this helps.

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Monolauren: 1800 mg twice daily
Olive Leaf: 1000-1500 mg twice daily
L-Lysine: 1000-1500 mg twice daily
Cat’s Claw tincture: 30-60 drops twice daily

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@mengla01

Can you tell me what type of doctor you saw to have this testing done? My daughter is suffering and I would love to find someone who may help her.

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There is a test at life exstensions for EBV

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I never did find the book on Amazon by Dr. Jesse Stoff Epstein. I was doing okay with my diet and exercise program, and suddenly this month I have crashed for no discernible reason. I am barely able to drag myself around the house. I have noticed MANY MANY supplements mentioned on this site, and I'm just wondering which ones truly work, or is it just a matter of trial and error? I have lost weight because I'm trying so hard to follow a healthy diet, but now my mental state is about as low as it can go. I really need help to manage this illness. I thought I was getting better, but a year into this whole mess and I'm worse than I was at the beginning. Can anyone recommend supplements that have truly worked? Or medications? This is especially hard in a COVID world.

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@nataliem

I never did find the book on Amazon by Dr. Jesse Stoff Epstein. I was doing okay with my diet and exercise program, and suddenly this month I have crashed for no discernible reason. I am barely able to drag myself around the house. I have noticed MANY MANY supplements mentioned on this site, and I'm just wondering which ones truly work, or is it just a matter of trial and error? I have lost weight because I'm trying so hard to follow a healthy diet, but now my mental state is about as low as it can go. I really need help to manage this illness. I thought I was getting better, but a year into this whole mess and I'm worse than I was at the beginning. Can anyone recommend supplements that have truly worked? Or medications? This is especially hard in a COVID world.

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@nataliem, Is this the book you are looking for on Amazon? Chronic Fatigue Syndrome - The Hidden Epidemic, November 19, 1988 by Jesse Stoff M.D.
https://www.amazon.com/Chronic-Fatigue-Syndrome-Jesse-Stoff/dp/0394569563/ref=tmm_hrd_swatch_0

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@nataliem

I never did find the book on Amazon by Dr. Jesse Stoff Epstein. I was doing okay with my diet and exercise program, and suddenly this month I have crashed for no discernible reason. I am barely able to drag myself around the house. I have noticed MANY MANY supplements mentioned on this site, and I'm just wondering which ones truly work, or is it just a matter of trial and error? I have lost weight because I'm trying so hard to follow a healthy diet, but now my mental state is about as low as it can go. I really need help to manage this illness. I thought I was getting better, but a year into this whole mess and I'm worse than I was at the beginning. Can anyone recommend supplements that have truly worked? Or medications? This is especially hard in a COVID world.

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Some supplements work for some people and different ones for others. I've tried them all and nothing seems to help.
Monolaurin & L-Lysine seem to be the two that work for most people.

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@johnbishop

@nataliem, Is this the book you are looking for on Amazon? Chronic Fatigue Syndrome - The Hidden Epidemic, November 19, 1988 by Jesse Stoff M.D.
https://www.amazon.com/Chronic-Fatigue-Syndrome-Jesse-Stoff/dp/0394569563/ref=tmm_hrd_swatch_0

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Yes, this book was recommended earlier on this site, but it was not listed on Amazon.

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@nataliem
I understand your frustration about finding the right supplements. I have not posted anything on this sight in a long time because I just find myself saying the same things over and over. It is really hard as a new comer to sift through the huge amount of information that everyone has posted. Here is a list of supplements that have helped me the most. Also... Exercise! You have to try your hardest to get out of bed and walk, or hike or do at home yoga, lift weights, what ever you can find that you enjoy doing. I feel so much better when I force myself to move. My symptoms are fatigue, severe brain fog, swollen lymph glands and a pain on my left chest that comes and goes. I first had Mono about 15 years ago so have been battling this since then, like most everyone in this blog. Here are supplements that help me a bit:
B12 / B6
L-Lysine
Alpha Lipoic Acid
Zinc
D3
C
Monolauren helps many, I am thinking about trying it again.
I hope this helps.

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@lisajensen

@nataliem
I understand your frustration about finding the right supplements. I have not posted anything on this sight in a long time because I just find myself saying the same things over and over. It is really hard as a new comer to sift through the huge amount of information that everyone has posted. Here is a list of supplements that have helped me the most. Also... Exercise! You have to try your hardest to get out of bed and walk, or hike or do at home yoga, lift weights, what ever you can find that you enjoy doing. I feel so much better when I force myself to move. My symptoms are fatigue, severe brain fog, swollen lymph glands and a pain on my left chest that comes and goes. I first had Mono about 15 years ago so have been battling this since then, like most everyone in this blog. Here are supplements that help me a bit:
B12 / B6
L-Lysine
Alpha Lipoic Acid
Zinc
D3
C
Monolauren helps many, I am thinking about trying it again.
I hope this helps.

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Yes, there are huge amounts of information, and i admit that I have never read through all thirty-something pages. It's just daunting. I was exercising and it was helping me, but suddenly the fatigue came back so heavy that any exercise at all made me fold like a house of cards. I can't understand it. I need to start over and just do a little bit and try to build back to where I was. Thank you for re-posting your supplements. I have tried most of them, but I will add the others. I have noticed that any stress at all sends me back to square one, so possibly there is a large mental component to this illness. Has anyone else noticed this?

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@nataliem

Yes, there are huge amounts of information, and i admit that I have never read through all thirty-something pages. It's just daunting. I was exercising and it was helping me, but suddenly the fatigue came back so heavy that any exercise at all made me fold like a house of cards. I can't understand it. I need to start over and just do a little bit and try to build back to where I was. Thank you for re-posting your supplements. I have tried most of them, but I will add the others. I have noticed that any stress at all sends me back to square one, so possibly there is a large mental component to this illness. Has anyone else noticed this?

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Yes, it absolutely effects your neurological state along with your body. I finally got one of the many specialists I see to look at EBV being the cause of most of my issues and symptoms. He is sending me for a DNA PCR test & referring me to John's Hopkins University. After having reactivated EBV for over two years with every test coming back higher he started listening.

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