Is chronic reactivated EBV different from chronic active EBV?

I can not believe there is no doctor on earth that can help us I feel like I’m dying I called a rare genetics he might take my case going to a functional dr will help but it is very expensive they give you ozone therapy and someone on here said buy the EBV book take every vitamin on there eat good you do all of this then mybe you will have a life right now Sloan Kettering is doing initiative T cell memory regeneration for chronic Epstein barre that is where it lies in your B and T cells and spreads rapidly. Doctors want to look at your blood comp panels that means nothing you need the EBV/dna test done if you want anyone of intelligence to speak to you at John Hopkins, Boston mass , Sloan kettering

I had mono first at 20 years old. Got feeling better completely within 6 weeks. Two years later at age 22, about three months ago, woke up with an acute flu like illness and two days later was feeling about 50% better, just a sore throat and fatigue. Doc tested me again for mono. Monospot gave a weak positive and EBV blood panel showed all positive except for igM was negative which they said was a past infection. Fatigue persisted as well as joint pain and muscle aches. I was tested again by a new doctor. Monospot was positive but they never ran a full blood panel again as far as I know. Lyme disease negative. West Nile negative. Spleen normal. Metabolic panel and CBC normal. Fatigue persisted and body pains went away gradually and it seemed the fatigue disappeared. Then after drinking a several drinks and getting slightly buzzed for the first time in three months, about three days later a severe sore throat recurred. Only hurt in left side when swallowing and left tonsil was enlarged. It has gradually reduced and is very mild 10 days later (about 90% better) but the incessant fatigue has returned. Also I suffer from GAD/panic disorder and started taking low dose Zoloft before the sore throat started.

Anyone have similar experiences?? I’m supposed to start my first full time job out of college in a week.

Hi just read your post I’m in the same age group. Have had mono as a teenager and just diagnosed with EBV .
I had my gallbladder out two years ago also being told it was my problem felt better for a few months then went down hill again.
Anyway just saw an infectious disease doctor
In NYC that is supposed to treat EBV and he told me the same thing they can do nothing for EBV. He told me I should stop antivirals that my regular Md gave me and treat the symptoms as they come.
Paid out of pocket to hear not much of anything new. He did take a lot of blood tests so waiting to see.
I work out everyday for my joints gently not like I used to because of fatigue.
Research is being done but not quickly enough.
I will look into an integrative medical group. Your information helped me thank you.

You need more clarification on the test that was done. First of all, it's a multi test. There will be more than one result. If you show positive for past virus, that's okay, even if you've never had mono. My son is positive for past virus and has never had mono either. There are different ways that you can have the positive for past virus. If this is the only part of the testing that shows positive, then CAEBV is not a health problem for you. This does not mean that you have Reactive Mono or Chronic Active. The other parts of this blood test will show if you have chronic mono. You need to get a better answer from your doctor. Call the nurse and she/he can look up your test and most likely verify this for you.

Hi @mattkl817 ....I had a similar experience with my first known EBV infection when I was almost 21 and then a bad relapse 6 months later. I was working as an RN that included 12 hour shifts, often no breaks, and odd hours which I am certain contributed to the relapse. After 3 months off, I could only go back to work part-time and pretty much had to "couch it" on my days off. I know that is no fun for a twenty-something, right!!?? Anyway, I am now 47 and have a greater understanding of my journey with EBV relapses. I relapsed again in my 30s and most recently at age 43. I am now thankful to be on the upswing of my last relapse. I have spent the past few years reading and researching about EBV and chronic fatigue syndrome. Most people can have an EBV infection or even develop mono and go on to live healthy, happy lives. But there are some, like us, who struggle with those life-changing relapses. The theory is that the stress from the initial virus sets the body into a forever stress mode causing a cascade of challenging symptoms for the patients and the doctors. I obviously can't diagnose or advise any treatment for you or have the room in this platform to explain everything in detail, but I can share a few things I've learned....EBV was only part of my illness. It turns out that it was Chronic Fatigue Syndrome which involves many other body systems, not just the immune system. It is not well understood or even recognized by conventional physicians. Even places such as the Mayo Clinic do not have up to date information on their website. Mayo Clinic still indicates cognitive behavioral therapy and graded exercise therapy for CFS which have been disproven to be effective and may even be harmful. The CDC is a better source. Only recently has there been updated information published in medical journals. Be aware that any kind of stressor whether it is lack of sleep, surgery, work stress, relationship stress, another illness -- can set you back. According to the research I've done, there is not one thing (such as a medication or lifestyle) that helped me overcome the debilitating fatigue. It involved hitting it from many angles -- a clean diet, supplements, DNRS (retrainingthebrain.com), proper sleep, and stress management to begin to get well. Dr. Rodger Murphree in Alabama (www.yourfibrodoctor.com) has been a tremendous help along with Annie Hopper's DNRS Program (www.retrainingthebrain.com). You can google both of those people for more info if you'd like. Also, be aware that conventional doctors may not understand EBV and the fatigue you are dealing with. Don't be disheartened by that. Most have NOT been educated about recurring EBV and/or CFS. Many of those suffering however, have had results with a functional medicine or integrative physician. You are your best advocate! Don't give up! Take care of yourself!

I’ve actually had active full-blown mono twice. 1st time was 1990, 2nd time around 2010. In 1995, I gotta mono\strep like infection that I couldn’t kick. I was diagnosed with EBV by my pediatrician and referred to a specialist. He diagnosed ME/CFS and it was my understanding that EBV is not an actual diagnosis. Most of population will test positive for EBV exposure, majority don’t get sick @all. If EBV is active then a person has mono.
Has your doctor mentioned ME/CFS? I would ask what the difference is between CREBV and ME/CFS? An infectious disease Dr can rule out Lyme disease, which presents similarly, too.

I have chronic reactivated epstein barr and I am at a loss as to what to do. My former primary doctor-who is now deceased-was the one who diagnosed me, and he was the only one who ever took me seriously. Since then it has been struggle after struggle with doctors, even infectious disease doctors, as none seem to support that it exists and that it's all in my head. I have even had some try and label me crazy. I cannot afford a naturopath, so I am on my own here. I can sometimes get someone to prescribe Valtrex but don't know how long I can expect that. My last numbers were EBV IGG VCA >750, up from a previous 687.00; EBV NUCLEAR AG IGG 39.90 positive down from a previous 42 positive; EBV EARLY AG 20.20 positive, up from a previous 18 positive. I know that spells reactivation. Granted I have had enough stress to rock any boat, and have made mistakes in my diet, but I don't want to be my own worst enemy in this but I just don't know what to do. I have a supply of Valtrex; I have L Lysine; I tried monolaurin; I take other supplements, D3, Tumeric, C, A, Coq10, etc. I get freaked out because there seems to be so much conflicting information regarding antivirals and supplements and no doctor here is of any help. My CBC and all have been relatively normal. It is like I have been in a "holding pattern" of sorts; no worse but no better and I want to break that pattern for the better so folks I need all the help and advice I can get.

There is research being done at the University of Minnesota. They have all sorts of information. https://sites.google.com/a/umn.edu/umnthemonoproject/home

I empathize with your situation. It's the same as mine, plus anemia & % iron saturation 8 which is a code blue alert Dr. Roach said. What antiviral medication were you on and for how long? Thanks for sharing your story.

I’m so relieved I found this chat room. I’m 55 and was diagnosed with mono last Nov 2019. I had a crazy busy month that month and tons of stress going on in my life. Lay around for a month and worked the odd day. Started to feel remotely normal and then unfortunately had to move house! That set me back. Exhausted and back to laying down. Then 3 weeks after moving I moved my daughter up to LA from OC and that put me even further back. Not all the same symptoms thankfully no panic attacks or the degree of a achy limbs but upset stomach and tingling in my legs and fatigue. It’s now April 11th and no way can I exercise. A walk to the car and a brief store trip is all I can do. Doing housework is enough. It really messes with your head!! Now we are in Covid 19! All the more reason to stay back inside and no way can I get checked out by the doctor. I’m making turmeric and ginger shots to have first thing and trying to continue to eat fresh foods etc!
I’m scared to think that there’s no end to this thing!!!