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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@sherryntn

I totally understand how you felt. I am on Monolaurin. Just up to 2 per day but keeping going. Glad you feel better!

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Thank you for posting. I will try this Monolaurin with my son. He is 7 and was diagnosed with EBV on 12/7/2018. He's homebound for school because he can't stay awake. He's sleeping 16-20 hours a day. When he is awake, he is pretty normal. He is on the Keto diet and his pediatrician is puzzled as to why he hasn't gotten better. He's not seen it affect such a young child this hard. I'm open to any ideas to help my son. We are seeing an Infectious Disease doctor on 1/25. Based on what I've read, I'm not very confident.

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@momnxtdr

Thank you for posting. I will try this Monolaurin with my son. He is 7 and was diagnosed with EBV on 12/7/2018. He's homebound for school because he can't stay awake. He's sleeping 16-20 hours a day. When he is awake, he is pretty normal. He is on the Keto diet and his pediatrician is puzzled as to why he hasn't gotten better. He's not seen it affect such a young child this hard. I'm open to any ideas to help my son. We are seeing an Infectious Disease doctor on 1/25. Based on what I've read, I'm not very confident.

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Hope I can help in some way. I have been suffering for a long time, with a current reactivation, bedbound 22 hours a day, so I understand how your son feels. I would stay away from the Keto diet , as I tried it, and it sent me into a horrible tailspin within two days. Most EBV protocols tell you to stay away from meat. It has high arginine. You need high Lysine, low arginine, and ALA for reversal of any nerve damage, Aloe Vera Juice, and a plant based, alkaline diet. High doses vitamin C, and astragalus. Coconut oil is converted into monolaurin in our bodies. Also I read that Sambucal daily to keep the virus in check while trying to heal it will help, as it has Elderberry, I am going to try it long term. You can't give the virus a chance of reactivating. When I put tons of Vitamin C in my body, I get worse, then better. Make his immune system super strong, fill it with vitamins and minerals, and anti viral herbs. Go at it from all sides. EBV likes to hide out in the spleen, I am going to try infrared therapy on my spleen and will advise if it helps. Hope this helps a bit.

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Eat these Foods Rich in Lysine (and low in arginine)
Yogurt
Most cheese (and other dairy products)
Apples, mangoes, apricots, pears (and many other fruits).
Fish (especially flounder)
Most poultry and meat
Avoid these foods rich in Arginine (and low in lysine)
Most nuts
Most seeds
Many grains (including oats and wheat).
Jello
Chocolate
In addition, some experts recommend an alkaline diet, which consists of foods that are low in acid. Here’s a list of acidic and alkaline foods.

Eat these alkaline foods:
Most fruits (including lemon, believe it or not).
Peppers, asparagus and parsley
Avoid these acidic foods:
Beef
Beer
Sugar

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@momnxtdr

Thank you for posting. I will try this Monolaurin with my son. He is 7 and was diagnosed with EBV on 12/7/2018. He's homebound for school because he can't stay awake. He's sleeping 16-20 hours a day. When he is awake, he is pretty normal. He is on the Keto diet and his pediatrician is puzzled as to why he hasn't gotten better. He's not seen it affect such a young child this hard. I'm open to any ideas to help my son. We are seeing an Infectious Disease doctor on 1/25. Based on what I've read, I'm not very confident.

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I think you are the first to post regarding a 7 year old. I agree with the advice and foods listed so far. I have battled Chronic EBV for 10 years. The best treatment for me is 500 mg ( maybe lower though for a 7 year old! ) Of L-lysine daily. That and a good brand of B-6 and B-12 for energy, Alpha Lipoic Acid for cell renewal, and EXERCISE as hard as it is to do it, I feel amazingly better after having an enjoyable fun and active activity. The huge one for me was the L-Lysine. Good luck. So sad.

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@koriann

Hope I can help in some way. I have been suffering for a long time, with a current reactivation, bedbound 22 hours a day, so I understand how your son feels. I would stay away from the Keto diet , as I tried it, and it sent me into a horrible tailspin within two days. Most EBV protocols tell you to stay away from meat. It has high arginine. You need high Lysine, low arginine, and ALA for reversal of any nerve damage, Aloe Vera Juice, and a plant based, alkaline diet. High doses vitamin C, and astragalus. Coconut oil is converted into monolaurin in our bodies. Also I read that Sambucal daily to keep the virus in check while trying to heal it will help, as it has Elderberry, I am going to try it long term. You can't give the virus a chance of reactivating. When I put tons of Vitamin C in my body, I get worse, then better. Make his immune system super strong, fill it with vitamins and minerals, and anti viral herbs. Go at it from all sides. EBV likes to hide out in the spleen, I am going to try infrared therapy on my spleen and will advise if it helps. Hope this helps a bit.

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Thank you. I will look for Lysine he can take. He can’t swallow capsules yet. We were told no dairy, gluten, sugar, or soy and high quality fat to feed the brain. He’s been eating turkey, beef, apples , pears, carrots, spinach, and some gluten free pasta. I’ve been using avocado, olive, and coconut oil. He’s had an occasional organic hot dog or gluten free/dairy free pizza. He’s not awake most of the day so I do my best to feed him as much as possible when he wakes up. Where will he get protein if I cut meat? He doesn’t eat fish or beans besides hummus. He takes a multi “Smarty Pants” , acidophilus, and an electrolyte tablet in water everyday. I looked at the elderberry but they all had sugar in them. Is there a brand that doesn’t? His pediatrician said sugar is what feeds the virus.

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@lisajensen

I think you are the first to post regarding a 7 year old. I agree with the advice and foods listed so far. I have battled Chronic EBV for 10 years. The best treatment for me is 500 mg ( maybe lower though for a 7 year old! ) Of L-lysine daily. That and a good brand of B-6 and B-12 for energy, Alpha Lipoic Acid for cell renewal, and EXERCISE as hard as it is to do it, I feel amazingly better after having an enjoyable fun and active activity. The huge one for me was the L-Lysine. Good luck. So sad.

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He hasn’t had energy for exercise. The doctor said he go back to jujitsu because his spline isn’t inflamed. We’ve attempted 3 times last week and he was wiped out before we got there. This week I will do my best to get him there and have him at least try for 15 minute warm up. I think he’s scared to over do it. I tell him since he’s not in school, better to test himself.

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@momnxtdr

Thank you. I will look for Lysine he can take. He can’t swallow capsules yet. We were told no dairy, gluten, sugar, or soy and high quality fat to feed the brain. He’s been eating turkey, beef, apples , pears, carrots, spinach, and some gluten free pasta. I’ve been using avocado, olive, and coconut oil. He’s had an occasional organic hot dog or gluten free/dairy free pizza. He’s not awake most of the day so I do my best to feed him as much as possible when he wakes up. Where will he get protein if I cut meat? He doesn’t eat fish or beans besides hummus. He takes a multi “Smarty Pants” , acidophilus, and an electrolyte tablet in water everyday. I looked at the elderberry but they all had sugar in them. Is there a brand that doesn’t? His pediatrician said sugar is what feeds the virus.

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You can buy bulk elderberries on line and make your own easily. I used honey to sweeten mine

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Your son does not have to take elderberries if it doesn't fit for him. I am gluten free too but not sure if it helps. I try to stay low sugar as well. I eat all meats and lots of veggies.

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@sherryntn

Have they checked his thyroid?

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Yes, T3, T4, Reverse T3, and TSH are all normal. I had a consult with a doctor who is concerned about his adrenals. Thyroid and digestion are fine.

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