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?

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!

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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.

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I was diagnosed with chronic reactive EBV in 1999. I was told there was something wrong with my immune system for it to set up in me the way that it had. I had an initial EBV infection in 1996. It reactivated and I have labs that show it was active in 2001 and 2004. I don't have all my labs but I most definitely had symptoms both times as well as the labs showing reactivation. They told me in 1999 that I would have "mono-like" symptoms for the rest of my life.
We moved. Over the years doctors started to give me the eye-roll when I told them my diagnosis. Then, in 2017 they tested my immune system. Turns out I have immunodeficiency (I have something called specific antibody deficiency that is evolving into common variable immune deficiency). Doctors no longer roll their eyes at me. My cousin has CVID and she was diagnosed with intermittent chronic reactive EBV. Our diagnosis sound very similar. Not everyone with CVID has this. Anyway, it is not your imagination that you have recurring boughts of symptoms and reactivations of EBV. You might want to have your immune system checked. Have them count your immunoglobulin titers and I think there is another thing, CD27 that could be missing. Someone in my group said that is the root of her issue with EBV.
Very few people, even among people with primary immune deficiency have this problem, but they are out there. You are not alone. There is a group on Facebook that can offer support.
You are right the chronic active people are much more serious.
I was told to be careful of my spleen, rest, avoid stress. There were certain vitamins I was supposed to take. My cousin takes antivirals (acyclovir) when hers flares up.
I wish I could be more help. Good luck to you.

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@lisa53

I was diagnosed with chronic reactive EBV in 1999. I was told there was something wrong with my immune system for it to set up in me the way that it had. I had an initial EBV infection in 1996. It reactivated and I have labs that show it was active in 2001 and 2004. I don't have all my labs but I most definitely had symptoms both times as well as the labs showing reactivation. They told me in 1999 that I would have "mono-like" symptoms for the rest of my life.
We moved. Over the years doctors started to give me the eye-roll when I told them my diagnosis. Then, in 2017 they tested my immune system. Turns out I have immunodeficiency (I have something called specific antibody deficiency that is evolving into common variable immune deficiency). Doctors no longer roll their eyes at me. My cousin has CVID and she was diagnosed with intermittent chronic reactive EBV. Our diagnosis sound very similar. Not everyone with CVID has this. Anyway, it is not your imagination that you have recurring boughts of symptoms and reactivations of EBV. You might want to have your immune system checked. Have them count your immunoglobulin titers and I think there is another thing, CD27 that could be missing. Someone in my group said that is the root of her issue with EBV.
Very few people, even among people with primary immune deficiency have this problem, but they are out there. You are not alone. There is a group on Facebook that can offer support.
You are right the chronic active people are much more serious.
I was told to be careful of my spleen, rest, avoid stress. There were certain vitamins I was supposed to take. My cousin takes antivirals (acyclovir) when hers flares up.
I wish I could be more help. Good luck to you.

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How do you get Drs to do that testing? My Drs think I'm a hypochondriac! Or crazy, or lazy! I'm beyond frustrated with asking bout bloodwork and having them poo-poo me!

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@swingerofbirch That would be frustrating not being able to talk with your doctor. Your bloodwork indicates that there might be a reactivation of the Epstein-Barr virus since the IgM is positive. Checkout https://ebvhelp.com/labs-diagnosis/ for more info. The pharmacist flagged the Valtrex prescription because it is an odd dose. It comes in a 500 mg and 1000 mg tablets. I'm wondering if your psychiatrist meant grams not milligrams. The psychiatrist is practicing bad medicine if her office does not contact you and explain why she has ordered a new medication! In my personal experience and what I have heard from others, infectious disease is not very helpful. I'm not saying that to discourage you from seeing infectious disease, I just want you to be prepared. Most people with reactivated EBV have better luck with a functional medicine doctor or naturopath.
Again, you can check out EBV.com for more info. I wish you the best in wellness, Marianne

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@lisa53

I was diagnosed with chronic reactive EBV in 1999. I was told there was something wrong with my immune system for it to set up in me the way that it had. I had an initial EBV infection in 1996. It reactivated and I have labs that show it was active in 2001 and 2004. I don't have all my labs but I most definitely had symptoms both times as well as the labs showing reactivation. They told me in 1999 that I would have "mono-like" symptoms for the rest of my life.
We moved. Over the years doctors started to give me the eye-roll when I told them my diagnosis. Then, in 2017 they tested my immune system. Turns out I have immunodeficiency (I have something called specific antibody deficiency that is evolving into common variable immune deficiency). Doctors no longer roll their eyes at me. My cousin has CVID and she was diagnosed with intermittent chronic reactive EBV. Our diagnosis sound very similar. Not everyone with CVID has this. Anyway, it is not your imagination that you have recurring boughts of symptoms and reactivations of EBV. You might want to have your immune system checked. Have them count your immunoglobulin titers and I think there is another thing, CD27 that could be missing. Someone in my group said that is the root of her issue with EBV.
Very few people, even among people with primary immune deficiency have this problem, but they are out there. You are not alone. There is a group on Facebook that can offer support.
You are right the chronic active people are much more serious.
I was told to be careful of my spleen, rest, avoid stress. There were certain vitamins I was supposed to take. My cousin takes antivirals (acyclovir) when hers flares up.
I wish I could be more help. Good luck to you.

Jump to this post

@lisa53 Thank you for the helpful information. I'm glad you were able to find some answers!

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@katlyn57

How do you get Drs to do that testing? My Drs think I'm a hypochondriac! Or crazy, or lazy! I'm beyond frustrated with asking bout bloodwork and having them poo-poo me!

Jump to this post

If you go to lab tests online there is a good explanation of EBV and antibody tests to be found. I tried to put up a link – but I just joined so this site will not let me. (They probably have to protect against spam on here).
Anyway, good luck to you.

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