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.

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lisajensen | @lisajensen | Jun 14, 2018
In reply to @lauraeinga "My husband developed CAEBV about a year ago and we've been trying to get in to..." + (show)
@lauraeinga

My husband developed CAEBV about a year ago and we've been trying to get in to see an ID Doc for almost a year. I have a feeling its a waste of time though because we don't have the best and brightest in my town. there is very little information and research on this virus in the medical literature, unfortunately, BUT they are looking for candidates for studies. I'm discussing that possibility with my husband. in the meantime ANY helpful strategies to deal with this debilitating illness is greatly appreciated!

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Cummings3 - You have submitted so much great information thank you. I feel so bad for your son's struggles. I am going to ask my NMD about the Alpha Lipoic Acid. I am about to try an antibiotic viral - one that is used for shingles and other issues. I have heard they don't work for CAEBV but my NMD has had some luck with it in other patients. Has your son tried any anti virals? Also, what does ALA do to alleve the virus? Thank you.

REPLY
justamom | @justamom | Jun 16, 2018

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!

REPLY
3 replies
justamom | @justamom | Jun 17, 2018
In reply to @nacc "I was diagnosed with a new infection of EBV at the age of 61> I got..." + (show)
@nacc

I was diagnosed with a new infection of EBV at the age of 61> I got sick in Aug. 2017. I'm so fatigued I can't live my life like I used to. I'm in pain all over
but try not to let it get me down. I don't tell people anymore because they don't understand what I am going through. I have been doing research too. Keep
trying to get help. Keep going to doctor's until you find one that will listen to you. I think I am experiencing the after effects of EBV, and that it was a new infection at my age it messed up my whole body. I follow the MM website, and do follow some of the protocols. I don't eat unhealthy foods. Hope someone can explain this weird virus to us. I'm trying Rhodiola, that I bought at Whole Foods. It promotes energy and resistance to stress. I also take magnesium at night and melatonin at night to help me sleep. Stay in touch. Thanks.

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Check the CFIDS website for information. Cures A to Z is also a great app that is a fantastic resource by a specialist. It offers treatment options and suggestions. Also visit the ILADS website to be sure it's only EBV and not Lyme Disease as well.

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justamom | @justamom | Jun 17, 2018

Please see my post. Hope it helps. You tube has excellent factual presentations by CFS/ME doctors including some from John's Hopkins. Southern Tier Lyme Support has also posted some excellent videos to educate about Lyme facts. EBV can be a co-infection.

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lisajensen | @lisajensen | Jun 17, 2018

Thank you justamom for the excellent information. I am sorry your family has had to go through these struggles. I will visit those sites you posted, this week for sure! Have your 2 sons gotten better through the specialists you have found? If so, which symptoms have gotten better? Have they tried anti viral medication? I have just started taking Acylovir which is something prescribed for shingles but has worked on some CAEBV patients.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 17, 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

@justamom, you mention ME/CFS in your post above. You may also be interested in contributing to this discussion:

- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

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michellebelle | @michellebelle | Jun 17, 2018

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.

REPLY
8 replies
dandy | @dandy | Jun 17, 2018

My initial symptoms were red, irritated eyes, plus hard sneezing from the chest, fatigue. That stopped and then the virus attacked all my joints. Horrible pain. Worse than my post-op spinal fusion 8 month before. An oxycontin would take 50% of the pain away....enough to shower, feed the animals, myself for four hours.

REPLY
lisajensen | @lisajensen | Jun 18, 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

Michellebelle... I don't know if this will help but I too was getting red and very puffy eyes. Assuming allergic reactions, I found I had become allergic to Advil. Maybe because I was taking it so often for my inflammation that I became allergic? But I now take Aleve and red eye is gone. I also suddenly became allergic to cashews which caused the exact same eye redness and puffing. I too did UV Ozone treatments which didn't help but I am going to try them again.

REPLY
michellebelle | @michellebelle | Jun 18, 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

Lisajensen, Thanks for your reply. Now that I am on Acyclovir pills and a Pazeo eye drop the redness has gone almost away completely. I love cashews and have been eating quite a few of them. I hope I don't have to give them up as well...

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