1. < Infectious Diseases

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.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

kkathysan | @kkathysan | Feb 25, 2020

I can see how it would be hard to imagine for someone that is not plagued with the Chronic Active form of the Epstein Barr Virus. Mono is an illness that comes from Epstein Barr which sounds like what you had. The Epstein Barr Virus never leaves your body after that. And in most people it never reactivates and makes them sick again. You sound like you are one of the fortunate ones. Unfortunately in some people their immune systems get out of wack and cannot keep it inactive, and it returns with symptoms all over again. It is a different illness altogether at that point, still Epstein Barr, but a Chronic form that shows a different pattern of Titers. I had this happen to me in my 30’s as a young mother and it lead to a very rare illness called Gillian Barre Syndrome and I was paralyzed in intensive care before I knew it. It took me years to recover from that illness. Then a few years later it appeared again keeping me in pain and on my couch barely able to enjoy life for almost a year. My Dr. tried to give me anti depressants! When I refused, he finally agreed to test me for Epstein Barr. (The reactivated form) showed up in the Titers and he immediately referred me to an infectious disease specialist who told me to go home and rest! Finally after much research on my own I Started intensive supplement therapy, and I gradually recovered or so I thought. I got lax in my supplement regimen and allowed my immune system to get weak again and along with a lot of family stressors (caring for sick parents, etc.) It came back! I am now in my 60’s and it is reactivated and as strong as ever. I have been fighting it with the help of an Integrative Drs. Practice and after 11/2 yrs finally starting to win the battle, I hope. Yes we do go to the Drs. But most General Practitioners do not know how to treat it. My Integrative Dr. now has me on Anti-Viral meds and a lot of supplements but it is as the name implies CHRONIC and ACTIVE. Epstein Barr can cause many illnesses, so I just work at getting a lot of rest, eating as healthy as I can, keeping stress low, and supplements to keep my immune system fighting. You sound like a very strong healthy individual and will probably never have to worry about illness with the virus again. BUT unfortunately there are many who do!!

REPLY
1 reply
kkathysan | @kkathysan | Feb 25, 2020
In reply to @cindylb "Once I had EBV (later in life in my 50's) I have had lower immunity and..." + (show)
@cindylb

Once I had EBV (later in life in my 50's) I have had lower immunity and more fatigue than I had previously. I did see where there are several doctors getting close to a vaccine for EBV, which would be great. For those replying here.....have doctors ruled out Guillan Barre syndrome (I'm sure my spelling is off). My brother in law had EBV a couple of times and then developed the much more debilitating Guillan Barre. It can be acute and chronic and very difficult to manage. EBV can also cause several cancers. I hope they find more help and information on EBV and a vaccine soon. Hugs

Jump to this post

Hi Cindylb, I saw your post referencing your Brother-in-law having Gillian Barre Syndrome from Epstein Barr Virus. I pray he is doing okay. I also had that in my 30’s...it was the worst experience of my life! Apparently I had an acute form as I have only had it once and it has never returned, although I do have Chronic Active Epstein Barre and an ongoing battle with that. The symptoms of Gillian Barre are very similar to MS, only more severe very quickly in my case. The onset generally starts with numbness and stinging in your feet and progresses up your legs gradually numbing the rest of your body until you are paralyzed. It can also affect your breathing, sight, internal organs. Hospitalization and constant monitoring is required if you are on the incline with this illness. There is another form that starts in the face called Fisher Miller Syndrome. If someone might suspect they are having any of the symptoms in the info below they should see a neurologist ASAP. It is a much different Illness than Epstein Barr Viral infection with specific symptoms related to the nervous system. As the myelin Sheathing on the nerves are being attacked by the antibodies trying to fight off an infection, you would be experiencing neurological symptoms. It is quite rare.

What is Miller Fisher Syndrome?
weak eye muscles, with double or blurred vision, and often drooping eyelids with facial weakness;
poor balance and coordination with sloppy or clumsy walking; and.
on physical examination, loss of deep tendon reflexes, such as the knee and ankle jerk.
GBS/CIDP Foundation › variants
Miller Fisher Syndrome - GBS/CIDP Foundation International

Fast facts on Guillain-Barré syndrome:

Here are some key points about Guillain-Barré syndrome. More detail and supporting information is online.

Guillain-Barré syndrome (GBS) is an autoimmune disease.
The first symptoms of GBS are usually tingling and muscle weakness that begins in the lower extremities. The entire body can eventually become paralyzed.
The exact causes are still unknown.
Once they start to occur, the symptoms of GBS tend to develop very rapidly, over a small number of days, usually causing the highest levels of weakness within the first 2 to 3 weeks of symptom onset.
The onset often follows an infection.
Most people fully recover within 12 months, but full recovery may take up to 3 years in some cases.

Just be aware of the symptoms and seek immediate help if suspected. It is not something to be managed on your own, like Epstein Barr Virus

REPLY
1 reply
lioness | @lioness | Feb 25, 2020
In reply to @kkathysan "I can see how it would be hard to imagine for someone that is not plagued..." + (show)
@kkathysan

I can see how it would be hard to imagine for someone that is not plagued with the Chronic Active form of the Epstein Barr Virus. Mono is an illness that comes from Epstein Barr which sounds like what you had. The Epstein Barr Virus never leaves your body after that. And in most people it never reactivates and makes them sick again. You sound like you are one of the fortunate ones. Unfortunately in some people their immune systems get out of wack and cannot keep it inactive, and it returns with symptoms all over again. It is a different illness altogether at that point, still Epstein Barr, but a Chronic form that shows a different pattern of Titers. I had this happen to me in my 30’s as a young mother and it lead to a very rare illness called Gillian Barre Syndrome and I was paralyzed in intensive care before I knew it. It took me years to recover from that illness. Then a few years later it appeared again keeping me in pain and on my couch barely able to enjoy life for almost a year. My Dr. tried to give me anti depressants! When I refused, he finally agreed to test me for Epstein Barr. (The reactivated form) showed up in the Titers and he immediately referred me to an infectious disease specialist who told me to go home and rest! Finally after much research on my own I Started intensive supplement therapy, and I gradually recovered or so I thought. I got lax in my supplement regimen and allowed my immune system to get weak again and along with a lot of family stressors (caring for sick parents, etc.) It came back! I am now in my 60’s and it is reactivated and as strong as ever. I have been fighting it with the help of an Integrative Drs. Practice and after 11/2 yrs finally starting to win the battle, I hope. Yes we do go to the Drs. But most General Practitioners do not know how to treat it. My Integrative Dr. now has me on Anti-Viral meds and a lot of supplements but it is as the name implies CHRONIC and ACTIVE. Epstein Barr can cause many illnesses, so I just work at getting a lot of rest, eating as healthy as I can, keeping stress low, and supplements to keep my immune system fighting. You sound like a very strong healthy individual and will probably never have to worry about illness with the virus again. BUT unfortunately there are many who do!!

Jump to this post

@kkathysan I guess I am fortunate the meds the Dr put me on first of all I still take a bunch of supplements vitamin,minerals and other things . Im sorry to all those who suffer from E.B. I know it lives in our system as does Herpes virus. I think that maybe where my canker sores in my mouth came from . I,ll have to research it more and talk with my Dr. who is a O.D, Thanks for sharing

REPLY
kkathysan | @kkathysan | Feb 25, 2020
In reply to @nataliem "Jonathan, I was diagnosed with Mono last Oct., and I have been sick ever since -..." + (show)
@nataliem

Jonathan, I was diagnosed with Mono last Oct., and I have been sick ever since - 5 months and counting. It is looking like I will have to quit my job, since I absolutely can not work. I am still looking for answers, and also wondering if I will have to live like this the rest of my life. Just know that you are not alone, and others feel what you feel. That's not much to offer, I know. I am pursuing every avenue, even though I live in a very small city with not much to offer. I am astounded that people have been living with this for 20-30 years. How do they keep hope going? I watch family and friends living their lives with happiness and energy, and I get so angry. I need tips on how to keep going when I feel like throwing in the towel. What's the use? This is not living.

Jump to this post

Hi Nataliem, I hope I can encourage you today by saying YES you can get better! It will take hard work and diligence on your part. But you can and will get better. I know right now it probably doesn’t seem like it, because it’s been months and months of feeling Awful but there is hope. I have a few recommendations for you. First do NOT give up and be determined to beat this monster back down. They say there is NO Cure for getting the virus out of your system, so you have to get your immune system built back up again so IT can put the EBV monster back in a dormant stage. It takes time, to do this as my Dr. told me, “Kathy this is a marathon, not a sprint!” Second go on Amazon and order this book. By Dr. Jesse Stoff, Chronic Fatigue Syndrome, the Hidden Epidemic (aka, Epstein Barre Virus). If you type in Dr. Jesse Stoff Epstein, it should come up in the list. You can also order supplements from Amazon to be delivered directly to your door. You said you were in a small town, so not sure what your resources are there, but thank goodness for online orders. Dr. Stoff list a protocol in his book of specific supplements and diet which got me back on my feet when I first was diagnosed with the Reactivated Virus in my 30’s. It’s an easy read, and helps you to understand what the virus is doing and how to combat it and build your immune system back up. And last but not least, find a Dr. in an integrative practice. They will be willing to test you regularly to check your Titers and progress, as well as help you with meds and supplement choices on your road to recovery. I am being treated with Anti-Virals along with supplements, which I am hoping will help more. Most GP’s do not know how to treat this illness. Do your own research, don’t rely on Drs. Who are too busy and don’t understand what you are going through. Chronic Epstein Barre is a very unforgiving Foe and you are your best advocate. Yes people do have a life long battle with this illness, but there are ups and downs. Getting to know your needs for rest and adjustments in your lifestyle to meet those needs is important. You could have years as I’ve had, where it doesn’t bother you at all, once you are back on your feet. But then all of a sudden I got lax in my diet and supplements, coupled with work and family stressors, like caring for sick parents, and the EBV reared it’s ugly head again in my 60’s!!! Imagine my surprise! The good news is, it has forced me to pay attention to my health again, and it is gradually getting better. Soooo.... Take care of YOU! You are the only one that can. Give your body what it needs to recover, and be patient. Prayers for you my friend, keep your chin up. It will get better.

REPLY
1 reply
cindylb | @cindylb | Feb 25, 2020
In reply to @kkathysan "Hi Cindylb, I saw your post referencing your Brother-in-law having Gillian Barre Syndrome from Epstein Barr..." + (show)
@kkathysan

Hi Cindylb, I saw your post referencing your Brother-in-law having Gillian Barre Syndrome from Epstein Barr Virus. I pray he is doing okay. I also had that in my 30’s...it was the worst experience of my life! Apparently I had an acute form as I have only had it once and it has never returned, although I do have Chronic Active Epstein Barre and an ongoing battle with that. The symptoms of Gillian Barre are very similar to MS, only more severe very quickly in my case. The onset generally starts with numbness and stinging in your feet and progresses up your legs gradually numbing the rest of your body until you are paralyzed. It can also affect your breathing, sight, internal organs. Hospitalization and constant monitoring is required if you are on the incline with this illness. There is another form that starts in the face called Fisher Miller Syndrome. If someone might suspect they are having any of the symptoms in the info below they should see a neurologist ASAP. It is a much different Illness than Epstein Barr Viral infection with specific symptoms related to the nervous system. As the myelin Sheathing on the nerves are being attacked by the antibodies trying to fight off an infection, you would be experiencing neurological symptoms. It is quite rare.

What is Miller Fisher Syndrome?
weak eye muscles, with double or blurred vision, and often drooping eyelids with facial weakness;
poor balance and coordination with sloppy or clumsy walking; and.
on physical examination, loss of deep tendon reflexes, such as the knee and ankle jerk.
GBS/CIDP Foundation › variants
Miller Fisher Syndrome - GBS/CIDP Foundation International

Fast facts on Guillain-Barré syndrome:

Here are some key points about Guillain-Barré syndrome. More detail and supporting information is online.

Guillain-Barré syndrome (GBS) is an autoimmune disease.
The first symptoms of GBS are usually tingling and muscle weakness that begins in the lower extremities. The entire body can eventually become paralyzed.
The exact causes are still unknown.
Once they start to occur, the symptoms of GBS tend to develop very rapidly, over a small number of days, usually causing the highest levels of weakness within the first 2 to 3 weeks of symptom onset.
The onset often follows an infection.
Most people fully recover within 12 months, but full recovery may take up to 3 years in some cases.

Just be aware of the symptoms and seek immediate help if suspected. It is not something to be managed on your own, like Epstein Barr Virus

Jump to this post

@kkathysan Thank you for your reply and all this great information! Unfortunately my brother in law died over 10 years ago in a car accident but he had sprung back somewhat from the Guillain Barre. For some (myself included) EBV really changes or diminishes your immune system. I still feel the effects and have to stay vigilant about what seem to be on going infections and issues. They all started with a very serious case of Mono in my mid 50's. Hugs to you!

REPLY
1 reply
tlane | @tlane | Feb 27, 2020
In reply to @kschmoyer9 "Hi EBV sufferers! I wish I had seen this earlier, but I just came across it..." + (show)
@kschmoyer9

Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you're not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn't stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.

Jump to this post

What supplements do you use?

REPLY
nataliem | @nataliem | Feb 28, 2020
In reply to @kkathysan "Hi Nataliem, I hope I can encourage you today by saying YES you can get better!..." + (show)
@kkathysan

Hi Nataliem, I hope I can encourage you today by saying YES you can get better! It will take hard work and diligence on your part. But you can and will get better. I know right now it probably doesn’t seem like it, because it’s been months and months of feeling Awful but there is hope. I have a few recommendations for you. First do NOT give up and be determined to beat this monster back down. They say there is NO Cure for getting the virus out of your system, so you have to get your immune system built back up again so IT can put the EBV monster back in a dormant stage. It takes time, to do this as my Dr. told me, “Kathy this is a marathon, not a sprint!” Second go on Amazon and order this book. By Dr. Jesse Stoff, Chronic Fatigue Syndrome, the Hidden Epidemic (aka, Epstein Barre Virus). If you type in Dr. Jesse Stoff Epstein, it should come up in the list. You can also order supplements from Amazon to be delivered directly to your door. You said you were in a small town, so not sure what your resources are there, but thank goodness for online orders. Dr. Stoff list a protocol in his book of specific supplements and diet which got me back on my feet when I first was diagnosed with the Reactivated Virus in my 30’s. It’s an easy read, and helps you to understand what the virus is doing and how to combat it and build your immune system back up. And last but not least, find a Dr. in an integrative practice. They will be willing to test you regularly to check your Titers and progress, as well as help you with meds and supplement choices on your road to recovery. I am being treated with Anti-Virals along with supplements, which I am hoping will help more. Most GP’s do not know how to treat this illness. Do your own research, don’t rely on Drs. Who are too busy and don’t understand what you are going through. Chronic Epstein Barre is a very unforgiving Foe and you are your best advocate. Yes people do have a life long battle with this illness, but there are ups and downs. Getting to know your needs for rest and adjustments in your lifestyle to meet those needs is important. You could have years as I’ve had, where it doesn’t bother you at all, once you are back on your feet. But then all of a sudden I got lax in my diet and supplements, coupled with work and family stressors, like caring for sick parents, and the EBV reared it’s ugly head again in my 60’s!!! Imagine my surprise! The good news is, it has forced me to pay attention to my health again, and it is gradually getting better. Soooo.... Take care of YOU! You are the only one that can. Give your body what it needs to recover, and be patient. Prayers for you my friend, keep your chin up. It will get better.

Jump to this post

Thank you for the hope and encouragement. This certainly is a battle, and it's hard to fight when you are always fatigued and brain fogged. I am taking supplements and have greatly improved my nutrition, and I will order the book you have recommended. My goal is to get back to work so I can afford all this, but I don't know if it's going to happen, and that is a HUGE source of stress. I never knew this could happen to a person, and no one I know seems to understand. Everyone just wonders why I don't get better. Thank goodness for this forum to find others who "get it," and can offer some help and advice.

REPLY
1 reply
nataliem | @nataliem | Feb 28, 2020
In reply to @cindylb "@kkathysan Thank you for your reply and all this great information! Unfortunately my brother in law..." + (show)
@cindylb

@kkathysan Thank you for your reply and all this great information! Unfortunately my brother in law died over 10 years ago in a car accident but he had sprung back somewhat from the Guillain Barre. For some (myself included) EBV really changes or diminishes your immune system. I still feel the effects and have to stay vigilant about what seem to be on going infections and issues. They all started with a very serious case of Mono in my mid 50's. Hugs to you!

Jump to this post

Yes, I am in my mid 50s with this horrible Mono! People just stupidly ask how I got it! I have no idea, but that's not the point. The point is, I need to get better so I can have a life! It appears I will be battling this for the rest of my life. I hope I can do it.

REPLY
kkathysan | @kkathysan | Feb 28, 2020
In reply to @nataliem "Thank you for the hope and encouragement. This certainly is a battle, and it's hard to..." + (show)
@nataliem

Thank you for the hope and encouragement. This certainly is a battle, and it's hard to fight when you are always fatigued and brain fogged. I am taking supplements and have greatly improved my nutrition, and I will order the book you have recommended. My goal is to get back to work so I can afford all this, but I don't know if it's going to happen, and that is a HUGE source of stress. I never knew this could happen to a person, and no one I know seems to understand. Everyone just wonders why I don't get better. Thank goodness for this forum to find others who "get it," and can offer some help and advice.

Jump to this post

Yes Nataliem, it is hard for other people to understand if they have never dealt with the awful fatigue and brain fog this illness can cause. I did find that an extreme amount of rest did help me when I was at my worst. I would wonder how I could sleep for 11 to 12 hours and still be exhausted when I woke up. But in order to work I would put myself in bed at 7:00 pm if necessary to be able to work the next day. And some of those days when I woke up, I still couldn’t make it! I would just call in and climb back in bed in tears. Eventually, 10 hrs did the job and even though I am better now, my body is still fighting high Titers in all (4) categories. So needless to say, I still have to be diligent on getting enough rest. My condition declines if I don’t get the rest I need every time. Pamper yourself and DO NOT feel guilty about it. The EBV monster can be raging inside and we look the same on the outside, so it is hard for people to understand the battle we fight. Get A LOT of REST and be good to YOU. You can feel better, but it will take time. Praying for you friend, Don’t give up, you will get there!

REPLY
catzarecool | @catzarecool | Apr 10, 2020
In reply to @cummings3 "My son is 17yrs. old and a senior in high school. He got the Epstein Barr..." + (show)
@cummings3

My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he's been constantly fatigued, just doesn't feel great half of the time, and is constantly contracting other infections and viruses.

Jump to this post

Your son sounds like mine. My son is 20 now, but missed most of his senior year of highschool. He has had this since age 13. Currently, he is living at home because he got so ill with EBV that he had to quit his job training program. In July, his EBV settled in his abdominal lymph nodes and caused painful inflammation that hasn't gone away. He was hospitalized due to that. We are currently working with an immunologist and a natural healing doctor. Nothing seems to be working. He catches other viruses as well. He can't stay well and doesn't remember feeling truly healthy. We have tried everything, I think, but are desperate for help. This is disabling for him.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.