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?

@jnrbutterfly

Hello everyone. I am taking a step of faith by posting on this feed. I hope that it is still active and that someone can help me to understand what is happening or possibly help point me in a direction that makes sense.

I went to the doctor in August of this year because I had been so fatigued that I often thought I was going to faint. I have never ever in my life felt so tired. At times, breathing felt like it too all of my energy… as crazy as that sounds. My doctor ordered a bunch of tests and one of them was for EBV. The results came back confusing to me…
My doc told me that I had a recent infection of EBV, but he assured me that I didn’t have mono nor was I contagious.
Based on what I’m seeing… it looks like both antibodies are elevated. Which looks like both a past and a recent infection. Regardless, it has been 5 months and I still feel terrible.

Here are my lab results:

EBNA >600.00 positive
EBV VCA IgG >750 positive
EBV VCA IgM 58.8 positive

In all the threads and forums I’ve seen… I haven’t seen anyone have all three of these test positive. What does that mean? Is this a reactivated EBV or a new infection? Thanks!

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Hi @jnrbutterfly . I too have had a positive IgM. My VCA IgG, EBNA, and early antigen were all above what the lab could detect. It looks like you either have a reactivation or this is your initial infection. If you are an adult, I'm guessing it's a reactivation. I got my initial infection at age 20 and now in a reactivation in my forties. Over 90% of the population has EBV sleeping in their body. It is a herpes virus (Herpes-4 to be exact) so like other herpes viruses it can awaken. Stress, whether physical, mental, emotional, can trigger it. Once I was fed up with it and the fact that my doctors were not taking my symptoms seriously, I began to do research on my own. I became a part of some EBV Facebook groups to see what was/wasn't working for others in my situation. Then researched some of the things that popped out. Some of the things that have helped others are nutrition (cut out processed sugars, gluten, dairy, eggs…), herbs, antiviral meds, changing lifestyle (decreasing stress as much as possible), and other supplements to support deficiencies (like iron and zinc). Is there anything that you have tried over the past 5 months. There are some resources that may be helpful for you. http://www.ebvhelp.com is run by Kasia Kines, PhD who just wrote "The Epstein-Barr Virus Solution." Rodger Murphree, DC has treated thousands of people with chronic fatigue syndrome. He also has a book called "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome." Jacob Teitelbaum, MD is a great resource as well. His website is http://www.vitality101.com. It takes patience and persistance!!!

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@mrmie

Hi @jnrbutterfly . I too have had a positive IgM. My VCA IgG, EBNA, and early antigen were all above what the lab could detect. It looks like you either have a reactivation or this is your initial infection. If you are an adult, I'm guessing it's a reactivation. I got my initial infection at age 20 and now in a reactivation in my forties. Over 90% of the population has EBV sleeping in their body. It is a herpes virus (Herpes-4 to be exact) so like other herpes viruses it can awaken. Stress, whether physical, mental, emotional, can trigger it. Once I was fed up with it and the fact that my doctors were not taking my symptoms seriously, I began to do research on my own. I became a part of some EBV Facebook groups to see what was/wasn't working for others in my situation. Then researched some of the things that popped out. Some of the things that have helped others are nutrition (cut out processed sugars, gluten, dairy, eggs…), herbs, antiviral meds, changing lifestyle (decreasing stress as much as possible), and other supplements to support deficiencies (like iron and zinc). Is there anything that you have tried over the past 5 months. There are some resources that may be helpful for you. http://www.ebvhelp.com is run by Kasia Kines, PhD who just wrote "The Epstein-Barr Virus Solution." Rodger Murphree, DC has treated thousands of people with chronic fatigue syndrome. He also has a book called "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome." Jacob Teitelbaum, MD is a great resource as well. His website is http://www.vitality101.com. It takes patience and persistance!!!

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Thanks for the information

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@mrmie

Hi @jnrbutterfly . I too have had a positive IgM. My VCA IgG, EBNA, and early antigen were all above what the lab could detect. It looks like you either have a reactivation or this is your initial infection. If you are an adult, I'm guessing it's a reactivation. I got my initial infection at age 20 and now in a reactivation in my forties. Over 90% of the population has EBV sleeping in their body. It is a herpes virus (Herpes-4 to be exact) so like other herpes viruses it can awaken. Stress, whether physical, mental, emotional, can trigger it. Once I was fed up with it and the fact that my doctors were not taking my symptoms seriously, I began to do research on my own. I became a part of some EBV Facebook groups to see what was/wasn't working for others in my situation. Then researched some of the things that popped out. Some of the things that have helped others are nutrition (cut out processed sugars, gluten, dairy, eggs…), herbs, antiviral meds, changing lifestyle (decreasing stress as much as possible), and other supplements to support deficiencies (like iron and zinc). Is there anything that you have tried over the past 5 months. There are some resources that may be helpful for you. http://www.ebvhelp.com is run by Kasia Kines, PhD who just wrote "The Epstein-Barr Virus Solution." Rodger Murphree, DC has treated thousands of people with chronic fatigue syndrome. He also has a book called "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome." Jacob Teitelbaum, MD is a great resource as well. His website is http://www.vitality101.com. It takes patience and persistance!!!

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@mrmie thank you for you response and the encouraging words. I really appreciate that! I avoid gluten and refined sugars. I try to eat as clean as possible. I have also been diagnosed with Graves’ disease in the past and find it rather interesting that based on some things that I have read, there is a link with EBV. I will try to figure out what supplements I want to add to my regime… I currently take coconut oil and turmeric daily. I also take colloidal silver and vitamin D.
My doctor as kind as he is, doesn’t seem to be very helpful. But regardless I am 35 and should not consistently feel this rotten.
Are there any supplements that you would suggest that you feel work really well? I have read that oregano oil is good to take.

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@jnrbutterfly1

@mrmie thank you for you response and the encouraging words. I really appreciate that! I avoid gluten and refined sugars. I try to eat as clean as possible. I have also been diagnosed with Graves’ disease in the past and find it rather interesting that based on some things that I have read, there is a link with EBV. I will try to figure out what supplements I want to add to my regime… I currently take coconut oil and turmeric daily. I also take colloidal silver and vitamin D.
My doctor as kind as he is, doesn’t seem to be very helpful. But regardless I am 35 and should not consistently feel this rotten.
Are there any supplements that you would suggest that you feel work really well? I have read that oregano oil is good to take.

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Just saw the links in your post! I will check those out!

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Just diagnosed, but it gets really scary when you read NIH research for CAEBV!

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@memecat28 …have you ever gotten an answer on reactivated versus chronic active?

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@memecat28

I am. I complained of chronic fatigue to my doctor at my new patient appointment and she ordered an array of tests. Everything came back normal except for vitamin d was low and the EBV tests were positive. I don’t really remember a point in my life I wasn’t tired, it was always just explained by life corcumstances. My previous doctor told me my intermittent chest pain, palpatations, muscle pain, fatigue and general malaise was all anxiety. My new doc has actually listened to me and ordered tests. Lately I have just been very fatigued and my lymph nodes are swelling off and on and I occasionally have a low grade temp.

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@memecat28 have you learned anything else? I too have the lymph issue and CAEBV…

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@jnrbutterfly

Hello everyone. I am taking a step of faith by posting on this feed. I hope that it is still active and that someone can help me to understand what is happening or possibly help point me in a direction that makes sense.

I went to the doctor in August of this year because I had been so fatigued that I often thought I was going to faint. I have never ever in my life felt so tired. At times, breathing felt like it too all of my energy… as crazy as that sounds. My doctor ordered a bunch of tests and one of them was for EBV. The results came back confusing to me…
My doc told me that I had a recent infection of EBV, but he assured me that I didn’t have mono nor was I contagious.
Based on what I’m seeing… it looks like both antibodies are elevated. Which looks like both a past and a recent infection. Regardless, it has been 5 months and I still feel terrible.

Here are my lab results:

EBNA >600.00 positive
EBV VCA IgG >750 positive
EBV VCA IgM 58.8 positive

In all the threads and forums I’ve seen… I haven’t seen anyone have all three of these test positive. What does that mean? Is this a reactivated EBV or a new infection? Thanks!

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@jnrbutterfly1 @jnrbutterfly did you get any answers or find a doctor that actually specializes in this besides Cohen at NIH??

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@luannkelly

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.

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@luannkelly did they say there is a difference between reactivated and chronic?

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Hello! I've never been on a forum, but stumbled on this in search of some answers. I'm thankful to read these posts and be part of this group.

My history is like most on here. I was always healthy & on the go, but when I turned 50 about 11 years ago I needed a routine surgery that went wrong & was readmitted twice due to complications I could have died from. A few weeks later when I thought I was getting well I started to decline. After a number of specialists & procedures I learned I had E.B.V. with very high numbers, cancer stage 0, and fibromyalgia (I have 2 sisters with that as well). I had surgery & am cancer free all these years. I use Lyrica as needed for the fibromyalgia, but I do pretty well, all things considered. The E.B.V. went away. My infectious disease doctor said it could rectivate sometime, but it's rare that ever happens with anyone.

Early Nov., 2018, I saw my family doctor explaining I was concerned my E.B.V. infection could be back, because I was so weak, tired easily, also very dizzy, light-headed, & sometimes felt like passing out. The bloodwork he ordered confirmed this.

I was told all I could do is rest & drink lots of water. I called my infectious disease doctor from when I had been in the hospital 11 years ago & this was confirmed-there was nothing a doctor can do for E.B.V. infection.

I would like to know how long can a reactivated e.b.v. infection last?

Can a reactivated E.B.V. infection take away one's appetite?

Can a reactivated E.B.V. infection become chronic?

Thank you!

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@tress1

Hello! I've never been on a forum, but stumbled on this in search of some answers. I'm thankful to read these posts and be part of this group.

My history is like most on here. I was always healthy & on the go, but when I turned 50 about 11 years ago I needed a routine surgery that went wrong & was readmitted twice due to complications I could have died from. A few weeks later when I thought I was getting well I started to decline. After a number of specialists & procedures I learned I had E.B.V. with very high numbers, cancer stage 0, and fibromyalgia (I have 2 sisters with that as well). I had surgery & am cancer free all these years. I use Lyrica as needed for the fibromyalgia, but I do pretty well, all things considered. The E.B.V. went away. My infectious disease doctor said it could rectivate sometime, but it's rare that ever happens with anyone.

Early Nov., 2018, I saw my family doctor explaining I was concerned my E.B.V. infection could be back, because I was so weak, tired easily, also very dizzy, light-headed, & sometimes felt like passing out. The bloodwork he ordered confirmed this.

I was told all I could do is rest & drink lots of water. I called my infectious disease doctor from when I had been in the hospital 11 years ago & this was confirmed-there was nothing a doctor can do for E.B.V. infection.

I would like to know how long can a reactivated e.b.v. infection last?

Can a reactivated E.B.V. infection take away one's appetite?

Can a reactivated E.B.V. infection become chronic?

Thank you!

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@tress1 Welcome. I'm sorry for what you are going through. EBV can last as long as it wants to and yes it can decrease your appetite. Im not sure about the chronic question.

Most traditional doctors have no idea how to treat it. They are not taught that in med school and do not have the time (and some simply don't want to) to do any research. I did have the time to research and have learned conventional doctors are a dead end. If you'd like to learn how to treat and beat fibro, chronic fatigue syndrome, ebv, and other related illnesses, check out yourfibrodoctor.com

Read his blogs, check out his videos. He has spent years researching and helping others like us.

Don't give up on feeling better!

Marianne

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@mrmie

@tress1 Welcome. I'm sorry for what you are going through. EBV can last as long as it wants to and yes it can decrease your appetite. Im not sure about the chronic question.

Most traditional doctors have no idea how to treat it. They are not taught that in med school and do not have the time (and some simply don't want to) to do any research. I did have the time to research and have learned conventional doctors are a dead end. If you'd like to learn how to treat and beat fibro, chronic fatigue syndrome, ebv, and other related illnesses, check out yourfibrodoctor.com

Read his blogs, check out his videos. He has spent years researching and helping others like us.

Don't give up on feeling better!

Marianne

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Thank you!

Liked by Marianne

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In reply to @tress1 "Thank you!" + (show)
@tress1

Thank you!

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Hello – I'm a newbie and have a couple of questions. In July of last year, my ALT levels (for liver) were sky high and my doctor assumed it was either alcohol related / fatty liver disease. I wasn't a big drinker, but cut that out and I immediately started eating better (following the Mediterranean diet) but it didn't seem to make any difference. I was sent to a liver doc who did the fibroscan and he thought I needed further testing, so sent me for a biopsy, which came back with better than expected results. HOWEVER – it appears that in August of last year, I was diagnosed with EBV (according to bloodwork), which I didn't know about. Liver doc figures it's related to what's going on with my liver (swollen) and that I need to keep on with the healthy eating, etc. and doesn't need to see me again for 6 months (yay). My question is – I have NO recollection of ever having had mono or anything like that as a kid or as an adult, so I was very surprised when the tests came back positive. I find the research I've done to be very confusing and so I guess I'm wondering if I'm one of those lucky people who will have to be monitored for life for EBV? I was also diagnosed with Fibromyalgia about 10 years ago, and now I'm wondering if it's not that and actually a side effect of EBV? Sorry this is so long – thanks for taking the time to read it 🙂

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@cjts1967

Hello – I'm a newbie and have a couple of questions. In July of last year, my ALT levels (for liver) were sky high and my doctor assumed it was either alcohol related / fatty liver disease. I wasn't a big drinker, but cut that out and I immediately started eating better (following the Mediterranean diet) but it didn't seem to make any difference. I was sent to a liver doc who did the fibroscan and he thought I needed further testing, so sent me for a biopsy, which came back with better than expected results. HOWEVER – it appears that in August of last year, I was diagnosed with EBV (according to bloodwork), which I didn't know about. Liver doc figures it's related to what's going on with my liver (swollen) and that I need to keep on with the healthy eating, etc. and doesn't need to see me again for 6 months (yay). My question is – I have NO recollection of ever having had mono or anything like that as a kid or as an adult, so I was very surprised when the tests came back positive. I find the research I've done to be very confusing and so I guess I'm wondering if I'm one of those lucky people who will have to be monitored for life for EBV? I was also diagnosed with Fibromyalgia about 10 years ago, and now I'm wondering if it's not that and actually a side effect of EBV? Sorry this is so long – thanks for taking the time to read it 🙂

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@cjts1967 Welcome! So sorry you are dealing with such a debilitating illness. I'd be happy to answer some of your questions, although I am not a doctor. You do not have to have had mono to have EBV in your body. Well over 90% of people have been exposed to the virus by the time they are adults. Most may have just had minor symptoms. Mono (more severe form) is usually seen in teens and young adults. I'm curious as to what was actually "positive." There are different antibodies to EBV. IgM detects current infection/reactivation. IgG detects past infection although if extremely elevated along with an elevated early antigen, it can reflect a current infection. Since most adults have been exposed to the virus, most have elevated IgG antibodies. When I relapse, my IgM is positive along with all the other antibodies being out the roof. I also have a fatty liver found accidentally on a CT scan. EBV can affect the liver. I'm assuming that's why in my case. I'm not a drinker, or overweight, and I have eaten a fairly good diet as an adult. My liver enzymes have always been normal, unlike your case. So it is a good idea to continue to monitor your liver function. As far as fibro being linked to EBV — that most definitely can be the case! Fibromyalgia is actually a collection of symptoms. It is only a diagnosis in the fact that there is an ICD10 code for it for billing purposes. The root cause can be different in everyone, but most always includes some kind of stress (infection, emotional, physical, surgery, environmental toxins, relationship stress, job stress). That can affect the immune system, sleep patterns, adrenal glands, and the list goes on. Most conventional doctors do not dig deep enough to find the root cause and treat it. For more information about EBV check out Kasia Kines, PhD at ebvhelp.com. For more info on fibro and chronic fatigue syndrome check out Dr. Rodger Murphree at yourfibrodoctor.com. Feel free to click on my profile, scroll to the bottom and read some of my other posts for more info. I'm glad you found this site. I know you want to get better! Please don't give up. You are your own best advocate! Keep us posted.

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@mrmie

@cjts1967 Welcome! So sorry you are dealing with such a debilitating illness. I'd be happy to answer some of your questions, although I am not a doctor. You do not have to have had mono to have EBV in your body. Well over 90% of people have been exposed to the virus by the time they are adults. Most may have just had minor symptoms. Mono (more severe form) is usually seen in teens and young adults. I'm curious as to what was actually "positive." There are different antibodies to EBV. IgM detects current infection/reactivation. IgG detects past infection although if extremely elevated along with an elevated early antigen, it can reflect a current infection. Since most adults have been exposed to the virus, most have elevated IgG antibodies. When I relapse, my IgM is positive along with all the other antibodies being out the roof. I also have a fatty liver found accidentally on a CT scan. EBV can affect the liver. I'm assuming that's why in my case. I'm not a drinker, or overweight, and I have eaten a fairly good diet as an adult. My liver enzymes have always been normal, unlike your case. So it is a good idea to continue to monitor your liver function. As far as fibro being linked to EBV — that most definitely can be the case! Fibromyalgia is actually a collection of symptoms. It is only a diagnosis in the fact that there is an ICD10 code for it for billing purposes. The root cause can be different in everyone, but most always includes some kind of stress (infection, emotional, physical, surgery, environmental toxins, relationship stress, job stress). That can affect the immune system, sleep patterns, adrenal glands, and the list goes on. Most conventional doctors do not dig deep enough to find the root cause and treat it. For more information about EBV check out Kasia Kines, PhD at ebvhelp.com. For more info on fibro and chronic fatigue syndrome check out Dr. Rodger Murphree at yourfibrodoctor.com. Feel free to click on my profile, scroll to the bottom and read some of my other posts for more info. I'm glad you found this site. I know you want to get better! Please don't give up. You are your own best advocate! Keep us posted.

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@mrmie Thank you for the welcome! Wow, there sure is a lot of information to weed through – the acronyms alone might do me in 🙂 Regarding my tests, I tested positive for VCA IgG, VCA IgM and EBNA-1 1gG with a note that says 'This serological profile occasionally occurs in late primary infection; it can also be seen during an EBV reactivation in patients that were remotely infected' (umm…sure?) I find it odd that my GP doesn't seem the least bit concerned about it (this is all from tests done in August 2018; I didn't even know about it until my liver doc pulled my reports). If stress is the culprit – the last 14 years have been full of it – my dad died suddenly and I completely fell apart, had to care for my bats**t crazy mother, she died, diagnosed with fibro on the same day I lost my condo to a fire and was 'homeless' for 9 months, job stress and my sister was diagnosed with Parkinsons about 5 years ago (geez, I don't mean for that to sound whiny). My tests also indicated that I have an elevated rheumatoid factor (25), but was tested for that 9 years ago and it came back negative). It's interesting how everything seems to tie together. For the most part, I feel okay – I have had a lot of body aches and pains for the past few months, so I'm attributing it to all of these other things going on. Ah, so much to learn with all of this. I think it's also important to do our own research – I love my doctor to bits, but I know for myself if I didn't look into all of these things on my own, I wouldn't have any idea. I was petrified for 6 months that my liver was failing – but had I known I had EBV, I could have correlated the connection between that and a swollen liver. Anyhow, thanks for letting me express my thoughts and I hope that during my journey I will not only learn – but also to be of help to others.

Liked by Marianne

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