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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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 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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@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 . I'm sorry you are dealing with EBV. I have dealt with it myself and know it can be frustrating. Some specific supplements for EBV I have tried or heard of others having success with include L-lysine, monolaurin, licorice root (be cautious if elevated blood pressure or low potassium). Some have had success with prescription meds such as Valtrex (valacyclovir) and LDN (low-dose naltrexone). You mentioned having an autoimmune disease as well. Often those can go along with EBV. Actually there are many other maladies that can go along with it. I have issues with my adrenals. My antibodies are not showing an active EBV infection currently but I am still dealing with debilitating fatigue although improving since working with a functional medicine doctor and supporting my adrenals and nutritional deficiencies. You can check out ebvhelp.com. Kasia Kines, PhD provides a wealth of information on EBV. And of course you can browse through other comments on this page. There really is a lot of info out there. Don't give up! You are your best advocate. 🙂

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@mrmie

Hi @mariajoyce . I'm sorry you are dealing with EBV. I have dealt with it myself and know it can be frustrating. Some specific supplements for EBV I have tried or heard of others having success with include L-lysine, monolaurin, licorice root (be cautious if elevated blood pressure or low potassium). Some have had success with prescription meds such as Valtrex (valacyclovir) and LDN (low-dose naltrexone). You mentioned having an autoimmune disease as well. Often those can go along with EBV. Actually there are many other maladies that can go along with it. I have issues with my adrenals. My antibodies are not showing an active EBV infection currently but I am still dealing with debilitating fatigue although improving since working with a functional medicine doctor and supporting my adrenals and nutritional deficiencies. You can check out ebvhelp.com. Kasia Kines, PhD provides a wealth of information on EBV. And of course you can browse through other comments on this page. There really is a lot of info out there. Don't give up! You are your best advocate. 🙂

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Thanks for the information on EBV. I am at a total loss when it comes to this virus. I am taking high dose vitamin D, LDN, valtrex, turmeric, and various types of vitamins. I'm even using a serum that I apply to my scalp once daily to help with hair loss. I have lost half of my hair volume and I am not sure what is causing it? My recent EBV labs have worsened over the last 6 weeks. I have tremendous burning to the back of my head which is intermittent.
As you can see, I am extremely frustrated and at a loss because I can't seen to correct my symptoms.

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@ethanmcconkey

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?

Jump to this post

I am taking different supplements with the hopes with putting this EBV virus to rest. Unfortunately, nothing is working. My recent EVB values have increased. Did a stem cell infusion 8 months ago with no relief in symptoms. Not sure where to go from here.

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@mariajoyce

I am taking different supplements with the hopes with putting this EBV virus to rest. Unfortunately, nothing is working. My recent EVB values have increased. Did a stem cell infusion 8 months ago with no relief in symptoms. Not sure where to go from here.

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Purchase THE EPSTEIN-BARR VIRUS SOLUTION book written by Dr. Kasia Kines. Her protocol of vitamins works great. My CAEBV values are in 400s and it worked GREAT! go to page 330 in her book available on amazon prime. I took her doses of Selenium, Licorice, Lysine, NAC, and ALA for 1.5 months and finally started seeing results! Her plan works!! Do it SOONEST!

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@mariajoyce

I am taking different supplements with the hopes with putting this EBV virus to rest. Unfortunately, nothing is working. My recent EVB values have increased. Did a stem cell infusion 8 months ago with no relief in symptoms. Not sure where to go from here.

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But do not take lysine if you do not have thyroid issues it will cause kidney issues.

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@mariajoyce

I am taking different supplements with the hopes with putting this EBV virus to rest. Unfortunately, nothing is working. My recent EVB values have increased. Did a stem cell infusion 8 months ago with no relief in symptoms. Not sure where to go from here.

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And stop any antiviral medications. From what I have read, it makes EBV WORSE, not better!

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@mariajoyce

I am taking different supplements with the hopes with putting this EBV virus to rest. Unfortunately, nothing is working. My recent EVB values have increased. Did a stem cell infusion 8 months ago with no relief in symptoms. Not sure where to go from here.

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Stay away from MD's, they are useless! @mariajoyce

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@cnoto

And stop any antiviral medications. From what I have read, it makes EBV WORSE, not better!

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Anti vitals gave me excruciating headaches. I stopped taking them.

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I wonder how many people here are still working full time jobs? Stress is a HUGE factor in the recovery. I haven't worked since a year before my diagnosis because I couldn't!. I have several other medical issues that accompany my Reactivated EBV. It is getting slowly better, as I try to limit stress and emotional turmoil. If someone is overly demanding of me, I have to back away from them. I think I am not alone in this. I think most of us are Susceptible to this because of our caregiving nature. I would live to hear others' experience.

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@luannkelly

I wonder how many people here are still working full time jobs? Stress is a HUGE factor in the recovery. I haven't worked since a year before my diagnosis because I couldn't!. I have several other medical issues that accompany my Reactivated EBV. It is getting slowly better, as I try to limit stress and emotional turmoil. If someone is overly demanding of me, I have to back away from them. I think I am not alone in this. I think most of us are Susceptible to this because of our caregiving nature. I would live to hear others' experience.

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@luannkelly , I have apparently had EBV issues since I was a baby. I have always had "bouts" of the stuff, but doctors always looked at me like I was a hypochondriac. I wasn't diagnosed until January of 2019! And it was REALLY BAD by then. Stress is definitely a factor…I am taking care of my parents and my dad is bedridden. Makes it super hard. Thankfully I am retired now, but it is often harder than my old career. Working a career with the stuff was hard, especially when MDs and ODs just look at you funny! I put up with that for over 40 years! My personal opinion: MDs and ODs need to test everyone to see if they have chronic issues. You will find by reading the Kasia Kines book on EBV that EBV is the basis for many, many, many diseases that are treated with other methods that are inappropriate for EBV and often makes things worse, like the antivirals!

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