Is chronic reactivated EBV different from chronic active EBV?

Posted by memecat28 @memecat28, Feb 7, 2018

I was just told I tested positive for all Epstein Barr Virus tests, except for the one that says you were recently infected. I was told I have Chronic Reactivated Epstein Barr Virus, and that I would be referred to an infectious disease doc. I started to research and everything keeps coming up with Chronic Active Epstein Barr, which seems to be a rare form and serious. Are these two forms different?

Liked by Marianne, bandolsmom

@mikla

My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.

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@mikla That is great news! Sounds like she is knowledgeable and supportive. That is a rare find.

@mikla

My PCP visit went great. She was well researched on EBV, CAEBV and the DNA PCR test. She walked through the various antibodies and explained how they might be elevated. She took blood and ordered the DNA test. We’ll see what comes back and take it from there. But I do feel REAL lucky to have a primary doctor that understands this issue so well.

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Hi, Where is your doctor located? What is her specialty? Is she seeing new clients? Thanks and good luck Frank

Hi Frank, Unfortunately, the wonderful ND that found the misdiagnosis of Lupus, CFS so fast has retired. He was a staff person at Bastyr Naturepathic
University's Seattle clinic. He's the one who first ordered the labs that confirmed the EBV reactivation. Another ND there several years later ran them also, but she is now with Doctors Without Border's in South America. When I ask my traditional docs to run the tests, they just run the same old ones that they run that don't pick up anything. I am pretty much on my own now, but knowing what works, I just keep using it.
Lysine is available everywhere and is inexpensive.
Monolaurin is harder to find, but Amazon does have it, and another ND has ordered it from her sources for me. Same for the Astra-Isatis. The monolaurin and Astra-Isatis are expensive, ($50-$60 each) but for me it's the difference between having a life and not having one. The Bastyr teaching clinic here can be wonderful, or can be frustrating. I'm in my 70s, so it only costs me $20 a visit. I was lucky. For years I had great student teams and docs. Now
I see a private ND for other reasons and she is much more expensive, but good. Where are you located? I do so hope you will be as fortunate as I was
in feeling wonderful again!

For 20 years I've thought I had arthritis only to find out recently that my RF and X-rays are normal. I have fatigue, joint pain all over, brain fog, etc. I asked my doctor to test for Lyme and EBV, bc all of this started a few years after I had Mono. My EBV came back very high and the labs show positive for reactivated EBV. My doctor is clueless and I am frustrated. I am super excited by @magbatt suggestion of natural medicine. I plan to start that pretty soon. I'm glad to hear that I am not alone. If anyone finds a doctor in GA I would love to hear about it.

Liked by Marianne

I just joined this group. I am 56 years old and suffered acute mononucleosis when I was 21 and in college. A perfect storm of stressful events triggered reactivation in 2014. I was diagnosed 3 1/2 years ago with Reactivated EBV. I never thought it would hang on so long. Mine affects muscle and energy recovery time, as well as flu-like symptoms ( body aches and chills, swollen lymph nodes) after periods of stress or overdoing it. Overdoing it could be as simple as attending a birthday party and doing 1 hour of light housework. It's as if my body punishes me by saying "how dare you try to live your life!". I understand that it affects us all a little differently. I was able to get SSDI after 3 years of appeals, which the stress made me even sicker. This is a very misunderstood illness with lots of ramifications. Last night I started crying again from frustration over having another "flul-ike episode. Which have been appearing almost daily while I amin the middle of a divorce and selling the house. I have had to research most of what I know because the medical community isn't well versed in this.

Liked by Marianne

Wow, no one has ever mentioned to me about an infectious disease doctor. I hope this doctor can help.

Hi @luannkelly! I'm glad you found this forum. I could have written your first post! I came down with a bad case of mono just a month shy of 21 y/o and not long after recovery ended up with "persistent EBV infection." Unfortunately at that time the internet was not around so I accepted the diagnosis and lived part-time. My thirties went well except for a 9 month relapse. Currently, I am 46 and have been in a relapse for over 2 years. I have had to quit my job because I couldn't even work from home. I know I don't have to explain because you understand the frustrating fatigue. I missed plenty of birthday parties, weddings, and other activities with family and friends. At one point overdoing it was making breakfast! I have been a part of the medical community for over 25 years as an RN and unfortunately, they don't get it. That has been extremely disappointing for me. You are your own best advocate! Join online EBV support groups such as this. Learn about what is helping others. Research it and then make the best decisions you can for your health. I saw an infectious disease MD 2 years ago who dismissed me as they have dismissed others. There are some who have been helped by infectious disease though. It's just hard to find a good one. From what I have learned from fellow EBV sufferers is that it's usually diet, supplements, and lifestyle changes that help the most. In addition to some being helped by taking Valtrex (antiviral med that can be ordered by your primary care doc). I'm currently following a protocol (diet and supplements) by Dr. Bill Rawls who has suffered from Lyme, CFS, Fibromyalgia, and reactivated EBV. Definitely pace yourself! Even if you feel like doing a lot in one day — don't. You will pay the price. I've learned from experience as I have improved (still a ways to go but am optimistic!). I am sorry for all the stress you are going through right now. That definitely hinders the immune system. Please don't give up, hang in there, be your own advocate, and lean on support groups even if it's just to vent. We have been there. 🙂

@purpleholli

For 20 years I've thought I had arthritis only to find out recently that my RF and X-rays are normal. I have fatigue, joint pain all over, brain fog, etc. I asked my doctor to test for Lyme and EBV, bc all of this started a few years after I had Mono. My EBV came back very high and the labs show positive for reactivated EBV. My doctor is clueless and I am frustrated. I am super excited by @magbatt suggestion of natural medicine. I plan to start that pretty soon. I'm glad to hear that I am not alone. If anyone finds a doctor in GA I would love to hear about it.

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Hi @purpleholli. I am sorry for all the symptoms you are experiencing and the disappointment you feel towards typical doctors. Unfortunately they do not understand chronic illnesses like this. Mine told me to exercise! Of course I would if I could — I used to run half marathons and lift weights. Anyway, I'm confident you will find some hope in alternative treatments. Learn what is helping others by reading all you can on online support groups. From what I have read, many have been helped with diet changes, supplements, lifestyle changes, and Valtrex (antiviral medication). Do your research and then make the best decision as possible. I'm currently doing a diet and supplement protocol by Bill Rawls, MD. He is a physician who has been through what we have including the frustration with the medical community. I also did the research on Valtrex and asked my nurse practitioner if that was something she would consider. She researched and went ahead and ordered it. This journey is definitely not a sprint, but rather a marathon. Learn, plan, pace yourself, celebrate small improvements. Let us know how you do. I wish you a full recovery!! 🙂

@mrmie

Hi @purpleholli. I am sorry for all the symptoms you are experiencing and the disappointment you feel towards typical doctors. Unfortunately they do not understand chronic illnesses like this. Mine told me to exercise! Of course I would if I could — I used to run half marathons and lift weights. Anyway, I'm confident you will find some hope in alternative treatments. Learn what is helping others by reading all you can on online support groups. From what I have read, many have been helped with diet changes, supplements, lifestyle changes, and Valtrex (antiviral medication). Do your research and then make the best decision as possible. I'm currently doing a diet and supplement protocol by Bill Rawls, MD. He is a physician who has been through what we have including the frustration with the medical community. I also did the research on Valtrex and asked my nurse practitioner if that was something she would consider. She researched and went ahead and ordered it. This journey is definitely not a sprint, but rather a marathon. Learn, plan, pace yourself, celebrate small improvements. Let us know how you do. I wish you a full recovery!! 🙂

Jump to this post

Hello,
I am having so much problems for two months now, I am swollen on my entire lymphatic path, it has been a long painful story for me, the only abnormal tests were the EBV and my doctor is one that doesn’t understand it either…Im suffering beyond words…is the valtrex working for you? Plz advise, thank you
Jenny

@magbatt

Hi Frank, Unfortunately, the wonderful ND that found the misdiagnosis of Lupus, CFS so fast has retired. He was a staff person at Bastyr Naturepathic
University's Seattle clinic. He's the one who first ordered the labs that confirmed the EBV reactivation. Another ND there several years later ran them also, but she is now with Doctors Without Border's in South America. When I ask my traditional docs to run the tests, they just run the same old ones that they run that don't pick up anything. I am pretty much on my own now, but knowing what works, I just keep using it.
Lysine is available everywhere and is inexpensive.
Monolaurin is harder to find, but Amazon does have it, and another ND has ordered it from her sources for me. Same for the Astra-Isatis. The monolaurin and Astra-Isatis are expensive, ($50-$60 each) but for me it's the difference between having a life and not having one. The Bastyr teaching clinic here can be wonderful, or can be frustrating. I'm in my 70s, so it only costs me $20 a visit. I was lucky. For years I had great student teams and docs. Now
I see a private ND for other reasons and she is much more expensive, but good. Where are you located? I do so hope you will be as fortunate as I was
in feeling wonderful again!

Jump to this post

Hello Magbatt,
Can you please tell me which antiviral medicine has worked for you? I am so so desperate…

I'm so sorry to hear of your continued battle with the evil EBV virus. As for Valtrex, I do not take it or any other pharma anti-Viral. I take the
protocol that was given to me by the staff ND at Bastyr Clinic. Astra-Isatis (2 tablets three times a day to start with, then twice a day.)
Lysine – (I started with 1,000mg twice a day then reduced it to once a day / or a split dose.) Monolaurin (Two or three times a day – don't
know the originally prescribed strength.) It took exactly days to know it was working. What an amazing difference! At one point, I found this
protocol on line along with the research to support it, but have not been able to find it recently. I have been taking it for nine years.

The Astra-Isatis can be difficult to find. I get mine at Bastyr by prescription, but have seen it online. (Made by Health Concerns) Cost's between $35
and $50 for 250 tablets. Monolaurin is not so easy to find either, and about the same price. I get mine at Bastyr, by prescription, but I have seen it on-line.
Lysine is cheap and available everywhere. You MUST take all three together for it to work in the beginning. I find that I can sometimes skip the
Monolaurin unless something triggers a reactivation. Do not use any kind of "energizers" that contain arginine out of desperation. Some research
shows that it dissolves the virus "capsule" and allows the virus to reactivate. Be careful – it's in almost all energy anythings, not always by name.
If it says "amino acids" you can bet there's arginine in it.

I can't say whether or not this will work for everybody, but it gave me back my life after years of mis-diagnosis (lupus) and misery.
Good luck to all! Magbatt

@magbatt

I'm so sorry to hear of your continued battle with the evil EBV virus. As for Valtrex, I do not take it or any other pharma anti-Viral. I take the
protocol that was given to me by the staff ND at Bastyr Clinic. Astra-Isatis (2 tablets three times a day to start with, then twice a day.)
Lysine – (I started with 1,000mg twice a day then reduced it to once a day / or a split dose.) Monolaurin (Two or three times a day – don't
know the originally prescribed strength.) It took exactly days to know it was working. What an amazing difference! At one point, I found this
protocol on line along with the research to support it, but have not been able to find it recently. I have been taking it for nine years.

The Astra-Isatis can be difficult to find. I get mine at Bastyr by prescription, but have seen it online. (Made by Health Concerns) Cost's between $35
and $50 for 250 tablets. Monolaurin is not so easy to find either, and about the same price. I get mine at Bastyr, by prescription, but I have seen it on-line.
Lysine is cheap and available everywhere. You MUST take all three together for it to work in the beginning. I find that I can sometimes skip the
Monolaurin unless something triggers a reactivation. Do not use any kind of "energizers" that contain arginine out of desperation. Some research
shows that it dissolves the virus "capsule" and allows the virus to reactivate. Be careful – it's in almost all energy anythings, not always by name.
If it says "amino acids" you can bet there's arginine in it.

I can't say whether or not this will work for everybody, but it gave me back my life after years of mis-diagnosis (lupus) and misery.
Good luck to all! Magbatt

Jump to this post

Thank you so much for your response, I will buy everything today on amazon and start asap, I have been sick for 2 month now and I am getting desperate…

@jgee18

Hello,
I am having so much problems for two months now, I am swollen on my entire lymphatic path, it has been a long painful story for me, the only abnormal tests were the EBV and my doctor is one that doesn’t understand it either…Im suffering beyond words…is the valtrex working for you? Plz advise, thank you
Jenny

Jump to this post

@jgee18 Hi Jenny. It's hard to say if the Valtrex (valacyclovir) is helping since I am doing other things as well. I'm at least hoping that it keeps me from going backwards. It may be more helpful for you since it sounds like you are in an acute phase in which it may be replicating with having those swollen lymph nodes. It may be worth discussing with your MD. Google valtrex and EBV to get some articles to share with your doc if needed. Wishing you speedy improvements!

@mrmie

Hi @luannkelly! I'm glad you found this forum. I could have written your first post! I came down with a bad case of mono just a month shy of 21 y/o and not long after recovery ended up with "persistent EBV infection." Unfortunately at that time the internet was not around so I accepted the diagnosis and lived part-time. My thirties went well except for a 9 month relapse. Currently, I am 46 and have been in a relapse for over 2 years. I have had to quit my job because I couldn't even work from home. I know I don't have to explain because you understand the frustrating fatigue. I missed plenty of birthday parties, weddings, and other activities with family and friends. At one point overdoing it was making breakfast! I have been a part of the medical community for over 25 years as an RN and unfortunately, they don't get it. That has been extremely disappointing for me. You are your own best advocate! Join online EBV support groups such as this. Learn about what is helping others. Research it and then make the best decisions you can for your health. I saw an infectious disease MD 2 years ago who dismissed me as they have dismissed others. There are some who have been helped by infectious disease though. It's just hard to find a good one. From what I have learned from fellow EBV sufferers is that it's usually diet, supplements, and lifestyle changes that help the most. In addition to some being helped by taking Valtrex (antiviral med that can be ordered by your primary care doc). I'm currently following a protocol (diet and supplements) by Dr. Bill Rawls who has suffered from Lyme, CFS, Fibromyalgia, and reactivated EBV. Definitely pace yourself! Even if you feel like doing a lot in one day — don't. You will pay the price. I've learned from experience as I have improved (still a ways to go but am optimistic!). I am sorry for all the stress you are going through right now. That definitely hinders the immune system. Please don't give up, hang in there, be your own advocate, and lean on support groups even if it's just to vent. We have been there. 🙂

Jump to this post

Thank you Marianne, for the kind response. Today has been one of those do little, try to recharge the batteries kind of day. Last winter I spent a month in Texas visiting my brother and his wonderful family. I had hoped a change in scenery and time away from my toxic marriage would make me all better. I was sick almost the entire time even though I was so happy to be there. You are right about being your own best advocate, and careful pacing of activities. My labrador retriever is a godsend too. He makes sure I get fresh air and keep my throwing arm in shape. 🙂

Liked by Marianne

@mrmie

@jgee18 Hi Jenny. It's hard to say if the Valtrex (valacyclovir) is helping since I am doing other things as well. I'm at least hoping that it keeps me from going backwards. It may be more helpful for you since it sounds like you are in an acute phase in which it may be replicating with having those swollen lymph nodes. It may be worth discussing with your MD. Google valtrex and EBV to get some articles to share with your doc if needed. Wishing you speedy improvements!

Jump to this post

Thank you so much for your response! Yes I have the entire lymphatic path swollen and I am in pain, one doctor placed me on prednisone and it didn’t help at all…I am getting desperate and crying at night because is the first time in my life I have been sick for two months now and I can’t even understand it…it’s very taxing even emotionally….Thank you for the advice, I will definitely do it…

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