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?

Interested in more discussions like this? Go to the Infectious Diseases group.

@mrmie

@swingerofbirch That would be frustrating not being able to talk with your doctor. Your bloodwork indicates that there might be a reactivation of the Epstein-Barr virus since the IgM is positive. Checkout https://ebvhelp.com/labs-diagnosis/ for more info. The pharmacist flagged the Valtrex prescription because it is an odd dose. It comes in a 500 mg and 1000 mg tablets. I'm wondering if your psychiatrist meant grams not milligrams. The psychiatrist is practicing bad medicine if her office does not contact you and explain why she has ordered a new medication! In my personal experience and what I have heard from others, infectious disease is not very helpful. I'm not saying that to discourage you from seeing infectious disease, I just want you to be prepared. Most people with reactivated EBV have better luck with a functional medicine doctor or naturopath.
Again, you can check out EBV.com for more info. I wish you the best in wellness, Marianne

Jump to this post

Thank you very much.

That site was helpful and also led to some other sources.

My doctor prescribed 4 grams (4,000 mg). She's known to do very unconventional things (like having me tested to begin with—I was only tested because she seems to be testing all her patients).

I kind of figured infectious disease might not see me. When I called they said they normally see people with HIV and hadn't heard of an EBV case, but my doctor (PCP) is trying to get me in now. He hasn't been too helpful. I've sent him the tables that show how you interpret the results and how I don't exactly fit into any of them, and the only response from the nurse is that he doesn't know about the tests. I sort of rely on him to help me out because again the psychiatrist is both difficult and "out there." She'll say things with complete certainty that are obviously not true but if you question her for a source for example she'll get very defensive. And I need to keep seeing her for my psych meds because it's very hard to get in to any psychiatrist where I live.

REPLY

A functional medicine doctor is more familiar with the diagnosis. You may want to try one of those doctors as well. They at least won't meet you with disbelief.
That said, it was a world-class medical hospital system that gave me my diagnosis, back in 1999. I should say diagnoses, they found a couple of other things wrong too. Just keep looking until you find a doctor that can help you, is my advice. Many patients with either rare, complex, or commonly misunderstood maladies find they go through several doctors before finding the one that nails down a diagnosis and plan of care for them.

REPLY
@lisa53

If you go to lab tests online there is a good explanation of EBV and antibody tests to be found. I tried to put up a link – but I just joined so this site will not let me. (They probably have to protect against spam on here).
Anyway, good luck to you.

Jump to this post

Hi @lisa53, you're absolutely right. New members have a trial period before being able to post links. We do this to discourage spammers.

I reviewed the website you wanted to post and it is indeed very helpful and a legitimate resource that I'm sure members of this discussion group will find useful. Here it is

– Understanding Epstein-Barr Virus (EBV) Antibody Tests https://labtestsonline.org/tests/epstein-barr-virus-ebv-antibody-tests

REPLY
@colleenyoung

Hi @lisa53, you're absolutely right. New members have a trial period before being able to post links. We do this to discourage spammers.

I reviewed the website you wanted to post and it is indeed very helpful and a legitimate resource that I'm sure members of this discussion group will find useful. Here it is

– Understanding Epstein-Barr Virus (EBV) Antibody Tests https://labtestsonline.org/tests/epstein-barr-virus-ebv-antibody-tests

Jump to this post

Thank you very much.

REPLY

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!!

REPLY
@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!!

Jump to this post

@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.

REPLY
@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!

Jump to this post

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!

REPLY
@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!

Jump to this post

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!

REPLY
@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!

Jump to this post

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

REPLY

@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. 😊

REPLY
@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?

Jump to this post

@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

REPLY
@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

Jump to this post

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?

REPLY
Please sign in or register to post a reply.
  Request Appointment