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.

aubreeb | @aubreeb | Jun 19, 2018
In reply to @lisajensen "@aubreeb - Some of your symptoms may not be CAEBV? Have you tried going gluten free?..." + (show)
@lisajensen

@aubreeb - Some of your symptoms may not be CAEBV?
Have you tried going gluten free? And have you tried allergy shots or drops? My husband had severe rashes and eczema, and was told gluten can cause it. He did NOT test positive for celiac disease, but did test positive for wheat allergies via a skin test. When he stopped eating wheat, the rashes totally healed. Also, both of us were having severe environmental allergies. We found a doctor who prescribed allergy drops and in about 3 months our allergies were basically gone. I have constant swollen glands too from the CAEBV. So far the only thing I have found to help that is Aleve, vitamin B12, and neck massages.

Jump to this post

@lisajensen hi! I have been on allergy shots for years and they seem to help with sinus infections. I only tested positive for a dust allergy. But I am very interested in trying the drops! I will ask him about this. I just recently (as of a couple of weeks ago) have gone gluten free and dairy free. I have started on a plant based/gluten free diet in hopes of eliminating at least some of my symptoms. Fingers crossed!

REPLY
michellebelle | @michellebelle | Jun 30, 2018
In reply to @michellebelle "This is a follow up on my CEBV condition. At 64 I believe I have had..." + (show)
@michellebelle

This is a follow up on my CEBV condition. At 64 I believe I have had this illness for all of my adult life. It has only been in the past twelve months that the illness had progressed to a point that it was difficult to function. I had almost 20 UV treatments which seemed to help at first but then stopped helping with my fatigue. Back in April I thought I had my old self back but it didn't last long.
A new development over the past two months has been red irritated eyes. Two eye doctors I saw said my allergies were acting up. After several rounds of steroids both in eye drop form and pills the redness wasn't going away. My allergist thought that I possible might be having a reaction to some of the medicines I have been on and not due to environmental issues. I met with another eye doctor this week and after she reviewed my medical report she concluded that this was a direct result of the EBV. Finally an eye doctor who knew something about EBV. I did know that the virus has caused my blurry vision but hadn't heard anyone report about red eyes and some eye lid irritation. I'm now on Acyclovir the antiviral medicine and a eye drop perscription. The eye doctor believes this will clear up my eye issue.
Has anyone else had eye issues from EBV? I have read that others were also using the antiviral medicine. I'll report back the results next week.

Jump to this post

CEBV: I finished my two week perscription of Acylovir and Pazeo drops. My eyes cleared up for a while but then went back to their red/pink watery, itchy state. It seems that everything I tried works for a while but then stops working. I also was on a strong antibiotic that seemed to clear up my eyes for a few days but then stopped working.

Now my eye doctor has put me on a regiment Xiidra twice a day along with the Pazeo and another over the counter for red itchy eyes. I'll be on this for a long time as it is to help with my dry eye syndrome which is aggravated by the CEBV.

On another note I went back and reread Anthony Williams Thyroid Healing and am starting the strict food plan he suggests. I've always eaten healthy and avoid his list of foods to stay away from. Now I'm going to follow his juicing plan for the next 90 days and see if that makes an improvement. I would love to hear from others who have or continue to be on the juicing plan. Any improvements in how you feel?

REPLY
candm | @candm | Jul 22, 2018
In reply to @justamom "Both of my sons were diagnosed with CEBV and CFS/ME. It permanently changed the paths of..." + (show)
@justamom

Both of my sons were diagnosed with CEBV and CFS/ME. It permanently changed the paths of their lives. The sadness is beyond words. I'm thankful to have found this group that have been through the same life altering issues. One thing I would like to mention to each of you suffering from this debilitating illness is the possibility of Lyme Disease and co-infections. It mimics symptoms so closely that my son has gone undiagnosed properly for years. While he has been 100% positive for EBV with back to back recurrences along with other infections like many of you, he now is still dealing with the virus on top of Lyme and several co-infections. I now know why he was never improving. Instead, he has gotten far worse.
I'm mentioning this because it may help someone or save someone from further suffering if by chance they too, have more than EBV. The standard testing is highly inaccurate and it caused years of life to be lost. There is still a long road ahead. Igenex Lab finally was the far more accurate test and it has helped many people. The EBV and Bartonella were positive. Others were borderline and yet he had every symptom. If you look up Lyme Disease and find information showing that you may have symptoms, please refer to the ILADS website for detailed information and find a LLMD ( Lyme Literate Medical Doctor). Also, if you or your loved one tests negative per the most accurate lab testing and you need a doctor specializing in CFS/ME, there is a website entitled CFIDS that will also help you to find a doctor that actually understands CEBV and CFS/ME that WILL listen and help! These illnesses both can damage the organs and the autonomic nervous system as well. That is a fact. Joint pain, memory issues, sudden drops in blood pressure with a high pulse rate happen. Spleen, liver, pancreatic inflammation can occur. Seeking a physician trained in specifically these illnesses is your best bet! I've found infectious disease practitioners that do not at all understand either one if they have not been formally educated with CME in Lyme Disease or CFS/ME. There are pediatric and adult doctors that treat both and they are MD's. I hope this helps someone. Keep hope and know you are not alone and no one asks for nor deserves to suffer any of these illnesses. Both of my sons missed their highschool memories and so much more. Thank you to all who have shared such great information here. I've learned a great deal. Blessings and wishes for restored health and peace to all!

Jump to this post

Our situation is so similar to yours that it’s unbelievable...I’ve been struggling for years (Lyme, co-infections, CAEBV). Now my 16 year old daughter is Hospital homebound from CAEBV diagnosed by ID at Nemours. (Also positive for Lyme and Bartonella) This is so devastating...our very happy life has come to a complete stop with no relief in sight.
The advice you give in your posts is 100% correct. We had to learn most of this the hard way also....many, many appointments and tests. These diseases are physically, emotionally and financially draining, not to mention painful. The pain is almost unbearable. The word fatigue does not accurately encompass the bone crushing exhaustion we feel. Just reading your posts has been so cathartic for me and I’m going to share with my daughter to give her hope and let her know we are not alone in this fight. Thank you from the bottom of my heart! I wish you and your sons health and happiness. Xo

REPLY
candm | @candm | Jul 22, 2018
In reply to @ebv2008 "i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE..." + (show)
@ebv2008

i GOT DIAGNOSED IN 2008 AND i AM 53 AND MY LIFE HAS NEVER BEEN THE SAME I AM DESPERATE FOR HELP

Jump to this post

Xo Looking for answers daily

REPLY
bfoxx | @bfoxx | Jul 31, 2018

Hello,

Hope everyone is well.
I am a 28 year old female.

Last year I was diagnosed with chronic EBV. I was so sick that I had to take FMLA from work and ultimately left that job to rest. I have felt tired, generally bad, and sore since. I feel so bad about myself, I go to the psychiatrist for the mental side of it, but sometimes I just wonder if I will ever catch a break.

I have since started a new job, and guess what? I am have a terrible flare up. It's been active for over a month now. It is attacking my chest, and throat. (Had my tonsils removed last year due to this, because they were flaring up with infection) Financially I can't afford to stay home, but it is interfering with every single aspect of my life. Since last year I have divorced, became a single mother, and dealing with this terrible health issue.

What do you recommend for everyday care? Other than stress management, what does everyone else do to try and avoid flare ups.

I am just so desperate. Should I see an infectious disease specialist?

Absolutely any advice would be helpful. It's to the point where I am just feeling so alone with this.

Thanks!

REPLY
1 reply
michellebelle | @michellebelle | Aug 1, 2018
In reply to @bfoxx "Hello, Hope everyone is well. I am a 28 year old female. Last year I was..." + (show)
@bfoxx

Hello,

Hope everyone is well.
I am a 28 year old female.

Last year I was diagnosed with chronic EBV. I was so sick that I had to take FMLA from work and ultimately left that job to rest. I have felt tired, generally bad, and sore since. I feel so bad about myself, I go to the psychiatrist for the mental side of it, but sometimes I just wonder if I will ever catch a break.

I have since started a new job, and guess what? I am have a terrible flare up. It's been active for over a month now. It is attacking my chest, and throat. (Had my tonsils removed last year due to this, because they were flaring up with infection) Financially I can't afford to stay home, but it is interfering with every single aspect of my life. Since last year I have divorced, became a single mother, and dealing with this terrible health issue.

What do you recommend for everyday care? Other than stress management, what does everyone else do to try and avoid flare ups.

I am just so desperate. Should I see an infectious disease specialist?

Absolutely any advice would be helpful. It's to the point where I am just feeling so alone with this.

Thanks!

Jump to this post

Dear Bfoxx,
My heart goes out to you. I too have been battling CEBV for the past year. I am retired at the age of 64 and have slowed down considerable from my active life. I don't believe I would be able to work at this time at least not at the position I held for over thirty years. The stress and physical needs of my career would be over whelming.
Over the past year I have seen numerous doctors and inquired at numerous medical centers about treatments. There is no clear path to getting treatments. When I went to an Infectious disease specialist I was given the diagnosis of EBV but no recommended treatments. The only help and encouragement that I have received from the medical world is through Holistic practices. The holistic doctors I have seen concentrate on nutrition and alternative medicine. Unfortunately very little is covered by insurance. I have just started a series of Amino Acids shots to build up my immune system. This is not a cure but I hope it will prevent me from getting worse and help me fight the fatigue. I also meditate and work on my mind healing my body.
I wish you the best and don't give up with looking into every possible solution. By sharing our stories we learn from each other and give moral support.
Bless you and keep positive,
MichelleBelle

REPLY
jean2018 | @jean2018 | Aug 1, 2018
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

Hello my daughter is 18 and she has Epstein Barr on and off acute it's called. She also has whip lash and mild scoliosis I have been taking her to get acupuncture and massage therapy helped some
I have found something that is helping her feel more energy and more alive and I want to share it with you both items are purchased from Amazon it's called natural cure labs Monolaurin 600mg and immune support with l lysine and 16 vitamins minerals and herbs. She has been on it for week now and she immediately feels a big difference. Please note she down not take any other vitamin or medicine too much vitamins are not good so she only takes these two and she feels so much better. My heart goes out to you and your son I hope this helps him please let me know if your results if you try these

REPLY
cummings3 | @cummings3 | Aug 6, 2018
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

Hi there- I purchased the monolaurin last year, but his neurologist has him on a few different meds right now to try and reverse the damage to his Autonomic Nervous System from the EBV.....So, I didn't want to mix this in at the time. When he starts coming off some of the other meds, we will definitely try the Monolaurin. I have read a lot about this and how it helps some people with the virus. Thanks so much for sharing and I wish your daughter well! It such frustrating illness for such a young age!

REPLY
lisajensen | @lisajensen | Aug 6, 2018
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

@jean2018 - What brand of L-Lysine do you use? I found Natural Cure Labs Monolaurin, thank you so much for the information.

REPLY
rengher | @rengher | Aug 7, 2018
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

My naturopath has me on Monolaurin supplement called "Lauricidin" - 3000mg of Monolaurin a dose. I take it 3 times a day. Have been doing it for about 6 months and feel like my energy is better. She says I will most likely need to take indefinitely. I also just began a prescription of Acyclovir to prevent the EBV virus from multiplying. These seem like they are helping and I don't feel as fatigued overall. Hope this is somewhat helpful!

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