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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uldiver | @uldiver | Jan 8, 2019
In reply to @mrmie "@chasingshadows I totally understand wanting to "reclaim your life." I recommend continuing to research and find..." + (show)
@mrmie

@chasingshadows I totally understand wanting to "reclaim your life." I recommend continuing to research and find something that you think will work for you. I have not heard any good things from anyone with EBV and Mayo. Another option is the functional medicine clinic at the Cleveland clinic. Also Dr Rodger Murphree at http://www.yourfibrodoctor.com, Dr Jacob Teitelbaum at vitality101.com. Kasia Kines, PhD just published a book about EBV called The Epstein-Barr Solution. It sounds like you are taking a lot of the right supplements. I am also on a lot of those however, I believe my issue stems from low cortisol so I am trying to focus on that now. I filled out the online paperwork to work with Dr. Murphree. I'm hoping to hear from his office soon. Continue to be your own advocate. Don't give up!

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Have you been dx’d with ME/CFS? Look on OMF.ngo, solvecfs.org, mepedia, ammes, CDC site has been updated too.
Good luck to you. Thanks for info about Cleveland Clinic. I was dx’d at Mayo, but the research and info is all at Stanford and NIH right now.

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1 reply
gjul16 | @gjul16 | Jan 8, 2019
In reply to @uldiver "Have you been dx’d with ME/CFS? Look on OMF.ngo, solvecfs.org, mepedia, ammes, CDC site has been..." + (show)
@uldiver

Have you been dx’d with ME/CFS? Look on OMF.ngo, solvecfs.org, mepedia, ammes, CDC site has been updated too.
Good luck to you. Thanks for info about Cleveland Clinic. I was dx’d at Mayo, but the research and info is all at Stanford and NIH right now.

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Are you referring to Stanford Medical's ME/CFS Clinic and its research (Jose Montoya MD) and Jeffrey I. Cohen MD at NIH?

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1 reply
uldiver | @uldiver | Jan 10, 2019
In reply to @gjul16 "Are you referring to Stanford Medical's ME/CFS Clinic and its research (Jose Montoya MD) and Jeffrey..." + (show)
@gjul16

Are you referring to Stanford Medical's ME/CFS Clinic and its research (Jose Montoya MD) and Jeffrey I. Cohen MD at NIH?

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Yes. They are the experts in the field. Very few nationwide who actually understand ME/CFS and don’t think your crazy/psychosomatic. It’s NOT a psychosomatic disorder, it is a chronic, complex, systemic disease/illness that needs proper treatment. Read the research behind it if you feel you match (sounds like you do meet criteria). It’s serious and if ignored can worsen quickly and cause serious dysfunction.

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coryelizabeth | @coryelizabeth | Jan 11, 2019

I am a little late to the game but this came up in my recent search about this topic and really hit home! I was diagnosed with Mono just about two years ago. It first appeared as chronic fatigue, and then I had symptoms equivalent to the worst strep throat I have ever experienced. The throat symptoms went away in about three weeks, but my fatigue took much longer to subside. Over the next year and a half, I would get similar throat symptoms about once every other month, which was very frustrating.

I finally started to feel normal again, but noticed that I constantly feel fatigued and just not well, in a way that is hard to describe. Sometimes it involves dizziness (like very mild vertigo), heavy head and eyes, feeling of being in a fog or bubble, and some days that involve severe headaches and even worse fatigue. I have not had a day in my memory since my mono diagnosis that i truly felt well.

I got a blood test this week to ensure that my iron levels, etc, were ok, sine my symptoms seemed to be that of someone with anemia, and it came back that the EBV virus had resurfaced, which I have had happen before in the last two years. I guess that I have chronic EBV? My PCP referred me to an infectious disease specialist, but I am weary of taking more medications because I feel that they are ruining my body in other ways. Has anyone experienced something similar or found any solutions?

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2 replies
coryelizabeth | @coryelizabeth | Jan 11, 2019
In reply to @coryelizabeth "I am a little late to the game but this came up in my recent search..." + (show)
@coryelizabeth

I am a little late to the game but this came up in my recent search about this topic and really hit home! I was diagnosed with Mono just about two years ago. It first appeared as chronic fatigue, and then I had symptoms equivalent to the worst strep throat I have ever experienced. The throat symptoms went away in about three weeks, but my fatigue took much longer to subside. Over the next year and a half, I would get similar throat symptoms about once every other month, which was very frustrating.

I finally started to feel normal again, but noticed that I constantly feel fatigued and just not well, in a way that is hard to describe. Sometimes it involves dizziness (like very mild vertigo), heavy head and eyes, feeling of being in a fog or bubble, and some days that involve severe headaches and even worse fatigue. I have not had a day in my memory since my mono diagnosis that i truly felt well.

I got a blood test this week to ensure that my iron levels, etc, were ok, sine my symptoms seemed to be that of someone with anemia, and it came back that the EBV virus had resurfaced, which I have had happen before in the last two years. I guess that I have chronic EBV? My PCP referred me to an infectious disease specialist, but I am weary of taking more medications because I feel that they are ruining my body in other ways. Has anyone experienced something similar or found any solutions?

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In addition, does anyone know if the virus resurfacing constantly like it does mean that I can give it to someone else? I am worried that my boyfriend may now have it because it has always been active in my body.

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1 reply
012064 | @012064 | Jan 11, 2019
In reply to @chasingshadows "This is my first post. I’ve been struggling with reactivated EBV throughout 2018. I believe it..." + (show)
@chasingshadows

This is my first post. I’ve been struggling with reactivated EBV throughout 2018. I believe it was brought on by the stress of having a vagus nerve stimulator surgically implanted to control my seizures, and a very difficult 2016 - 2017 trying to get my seizures under control with dozens of medication changes. None were effective (terrible psychiatric side effects), which is why I opted for the VNS, and that has been a much better treatment option. Aside from becoming ill with EBV.

My thyroid function is off (I have Hashimoto’s), and I’ve been swinging between being hyper and hypo. So my meds have been changed several times in the past year. I have more symptoms of being hypo. Add those on top of my EBV symptoms. Not fun. I don’t dare brush my hair for fear I might lose what’s left of it!

I’ve tried three courses of antivirals. I take liposomal Vitamin C, L-lysine and monolaurin daily, plus magnesium, calcium, zinc and a B-complex. Weekly, per my doc, I take 50,000iu of Vitamin D and an additional 2,000iu per day, but I’m still deficient. I guess my body isn’t absorbing or using D for some reason. Maybe because I had 20 precancerous colon polyps removed in 2017. No one has an answer. I spend money out of pocket to get B12 injections and IV vitamin infusions because my doctors have been of little help and I just want to feel better and reclaim my career, time with my family, my life.

Essentially, I’m bedridden because of the fatigue and pain. This has made my anxiety and depression unbearable. I’m at my wit’s end. There is only so much clean eating, so many vitamins and therapy one can do to keep at this day after day. Where are the doctors who can help? Who want to help? Who are qualified to help? Mayo’s Infectious Disease department refused my case, so where do I go now?

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I am sorry to hear that there is someone else going through this reactivated EBV. It's horrible, and I know how you feel. I, too, have been battling it for almost 2 years. My family doctor is aware of it, but doesn't know why. I'm to see a dr. of internal medicine this month. But I don't feel that is going to produce any answers either. My Vitamin D continues to drop even though I've upped my dosage. I pray that we will all find answers to this. Hang in there, Chasingshadows! There is comfort in knowing it's not just in our heads, but there are others going through the same thing.

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1 reply
sherryntn | @sherryntn | Jan 11, 2019
In reply to @012064 "I am sorry to hear that there is someone else going through this reactivated EBV. It's..." + (show)
@012064

I am sorry to hear that there is someone else going through this reactivated EBV. It's horrible, and I know how you feel. I, too, have been battling it for almost 2 years. My family doctor is aware of it, but doesn't know why. I'm to see a dr. of internal medicine this month. But I don't feel that is going to produce any answers either. My Vitamin D continues to drop even though I've upped my dosage. I pray that we will all find answers to this. Hang in there, Chasingshadows! There is comfort in knowing it's not just in our heads, but there are others going through the same thing.

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012064, is your vit C, B and iron low too? My EBV numbers have dropped only slightly. Are you the same?

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1 reply
lioness | @lioness | Jan 11, 2019

@012064 When I had full blown Mono the Dr put me on a regimen of Vitamins especially Vit B and all of them My EBV was so bad I had the rash with it so bedrest and Vitamins all of them Hope this helps

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012064 | @012064 | Jan 12, 2019
In reply to @sherryntn "012064, is your vit C, B and iron low too? My EBV numbers have dropped only..." + (show)
@sherryntn

012064, is your vit C, B and iron low too? My EBV numbers have dropped only slightly. Are you the same?

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@sherryntn

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1 reply
012064 | @012064 | Jan 12, 2019
In reply to @012064 "@sherryntn" + (show)

All vitamin levels are good except D. My EBV numbers have not dropped.

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