1. < Infectious Diseases

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?

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ddnj1315 | @ddnj1315 | Feb 13, 2019

Can someone help me understand these results? I don’t really have any syptoms other than being tired. I also, have some pain under my left ribcage, spleen maybe? Doing some research and looks like caebv is really severe, I’m guessing there’s a difference between a react and this? I don’t ever remember having mono. Also, I believe I’ve been positive for this now for overa year. Kinda scared!!
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1 reply
Marianne | @mrmie | Mar 6, 2019
In reply to @ddnj1315 "Can someone help me understand these results? I don’t really have any syptoms other than being..." + (show)
@ddnj1315

Can someone help me understand these results? I don’t really have any syptoms other than being tired. I also, have some pain under my left ribcage, spleen maybe? Doing some research and looks like caebv is really severe, I’m guessing there’s a difference between a react and this? I don’t ever remember having mono. Also, I believe I’ve been positive for this now for overa year. Kinda scared!!

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@ddnj I apologize for taking so long to respond! I'm sorry you are going through this. According to what I have learned, your labs could possibly indicate a reactivation due to the Early Antigen being elevated. However, about 20% of folks will carry an elevated Early Antigen and not be in a reactivation. There are some resources out there that provide helpful information such as http://www.ebvhelp.com. This is a site directed by Kasia Kines, PhD who has dedicated quite a bit of time to researching this virus and recently published a book last Fall. I have also published a wellness blog. http://www.BackToLifeWellness.blogspot.com ....I simply started this so I could use my brain (once I got the energy) while recovering and to help educate others about their wellness. The post about the "Sleeping Giant..." intertwines my personal experience along with valuable info for those suffering with reactivated EBV. I wish you the best of luck. Keep us posted.

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suesm | @suesm | Mar 18, 2019
In reply to @magbatt "Hi Frank, Unfortunately, the wonderful ND that found the misdiagnosis of Lupus, CFS so fast has..." + (show)
@magbatt

Hi Frank, Unfortunately, the wonderful ND that found the misdiagnosis of Lupus, CFS so fast has retired. He was a staff person at Bastyr Naturepathic
University's Seattle clinic. He's the one who first ordered the labs that confirmed the EBV reactivation. Another ND there several years later ran them also, but she is now with Doctors Without Border's in South America. When I ask my traditional docs to run the tests, they just run the same old ones that they run that don't pick up anything. I am pretty much on my own now, but knowing what works, I just keep using it.
Lysine is available everywhere and is inexpensive.
Monolaurin is harder to find, but Amazon does have it, and another ND has ordered it from her sources for me. Same for the Astra-Isatis. The monolaurin and Astra-Isatis are expensive, ($50-$60 each) but for me it's the difference between having a life and not having one. The Bastyr teaching clinic here can be wonderful, or can be frustrating. I'm in my 70s, so it only costs me $20 a visit. I was lucky. For years I had great student teams and docs. Now
I see a private ND for other reasons and she is much more expensive, but good. Where are you located? I do so hope you will be as fortunate as I was
in feeling wonderful again!

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Hi my name is Sue. I just started on this site last week. I also have CaEBV. I just ordered Lauricidun from MED CHEM LABS, GOODYEAR, ARIZONA 85338. It cost me $60 for 2, 8 oz. Containers. Sure seems like a good deal.

I have been really sick with fever, malaise, weakness and bad left side pain. No energy at all. I will take any suggestions anyone has. I am the newbie!!🙂Thank you!

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1 reply
Marianne | @mrmie | Mar 19, 2019
In reply to @suesm "Hi my name is Sue. I just started on this site last week. I also have..." + (show)
@suesm

Hi my name is Sue. I just started on this site last week. I also have CaEBV. I just ordered Lauricidun from MED CHEM LABS, GOODYEAR, ARIZONA 85338. It cost me $60 for 2, 8 oz. Containers. Sure seems like a good deal.

I have been really sick with fever, malaise, weakness and bad left side pain. No energy at all. I will take any suggestions anyone has. I am the newbie!!🙂Thank you!

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Hi @suesm. I am so sorry you are dealing with such a frustrating illness. I dealt with reactivated EBV in my 20s and now again in my 40s. I have heard good things about Lauricidin. I hope it is helpful for you. Check out the March post at BackToLifeWellness.blogspot.com. It is a summary of what I've learned about EBV written from the virus' perspective. There are links at the bottom you may find helpful. May you feel better soon. Keep us posted!

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1 reply
suesm | @suesm | Mar 19, 2019
In reply to @mrmie "Hi @suesm. I am so sorry you are dealing with such a frustrating illness. I dealt..." + (show)
@mrmie

Hi @suesm. I am so sorry you are dealing with such a frustrating illness. I dealt with reactivated EBV in my 20s and now again in my 40s. I have heard good things about Lauricidin. I hope it is helpful for you. Check out the March post at BackToLifeWellness.blogspot.com. It is a summary of what I've learned about EBV written from the virus' perspective. There are links at the bottom you may find helpful. May you feel better soon. Keep us posted!

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Thank you Marianne, So by your reply it sounds like this disease can go into remission or am I on a countdown to the end? No one around my hometown really has much information for me

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Marianne | @mrmie | Mar 20, 2019

@suesm Reactivated EBV can go into remission. Chronic active EBV is the rare form, it is more serious, and is actually taken seriously by conventional medical doctors. With the CAEBV A person will have markedly elevated EBVPCR levels (dna). Often times though, people use the term CAEBV interchangeably with reactivated and the more severe form. I hope I just didn't confuse you more! EBVhelp.com is a really good resource. 😊

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lioness | @lioness | Mar 22, 2019
In reply to @acapulcoheart "I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i..." + (show)
@acapulcoheart

I was diagnosed in May 17 with EBV Mono. Dr. said maybe 6 months and i am still experiencing fatigue. I am 56 yrs old . It has changed me completely, im always tired so i try to plan very little anymore. My body is in constant pain anymore and I think it is due to Mono. Every muscle aches on me besides the arthiritis in hands feet etc. I prefer to sit still and not move , this was not me prior.
Who should i see , does this sound the same for someone else?

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@acapulcoheart Years ago I had Mono the Dr put me on B vitamins and bedrest for 3
weeks I cant remember any other meds just Vitamins B in particular

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 22, 2019
In reply to @mariajoyce "Any suggestions as to how to treat specifically Reactivation of EBV. I have tried multiple supplements,..." + (show)
@mariajoyce

Any suggestions as to how to treat specifically Reactivation of EBV. I have tried multiple supplements, including glutathione, methyl protect to name a few. I am not any better. I actually feel worse now since starting different treatments. I am on high dose vitamin D for the autoimmune disorder. Not sure if it is working. Please help!
Maria

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Hi @mariajoyce, welcome to Connect. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where it will have more visibility and you can meet other members discussing reactivated EBV.

> Groups > Infectious Diseases > Is chronic reactivated EBV different from chronic active EBV?
-- https://connect.mayoclinic.org/discussion/is-chronic-reactivated-epstein-barr-virus-different-from-chronicle-ac/

Has your doctor offered any suggestions for different treatments?

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mariajoyce | @mariajoyce | Mar 22, 2019

Any suggestions as to how to treat specifically Reactivation of EBV. I have tried multiple supplements, including glutathione, methyl protect to name a few. I am not any better. I actually feel worse now since starting different treatments. I am on high dose vitamin D for the autoimmune disorder. Not sure if it is working. Please help!
Maria

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2 replies
Ethan McConkey, Moderator | @ethanmcconkey | Mar 22, 2019

Hi @mariajoyce and I want to join @johnbishop in welcoming you to Connect. As John suggested, i moved your post to this existing discussion on EBV so that you can connect with others who have similar symptoms. Simply click VIEW & REPLY in your email notification to get to your post.

I also wanted to introduce you to fellow Connect members @mrmie and @lisa53 who may be able to offer you support.

I'd like to repeat the question John posed to you, has your doctor offered any suggestions to different treatment?

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