Is chronic reactivated EBV different from chronic active EBV?

@mariajoyce I agree with @cnoto on The Epstein-Barr Virus Solution book by Kasia Kines, PhD. There is also a lot of info on her website at http://www.ebvhelp.com. So you had a stem cell infusion? Wow! I haven't heard from anyone who had that done. From what I've read it is usually for those with the severe chronic form with markedly elevated PCR (EBV DNA in the blood). Your doctors should give you some sort of direction on where to go from here. However, if not, read all you can and don't give up. You mentioned hair loss. That can be from a number of things. You may want to have a ferritin level checked. That checks for iron storage. Optimally it should be at least above 50. Hair loss can also be due to low thyroid as well Unfortunately typical doctors only order a TSH and maybe a T4. Ideally, they should also look at Free and Total T4 & T3, Reverse T3, and specific thyroid antibodies. I have learned this from reading info from different functional medicine doctors. The adrenals can also be running low due to the chronic infection. That has been my problem. An endocrinologist totally dismissed my symptoms, but thankfully I am working with a functional medicine doctor who is treating me and I am seeing results. I realize there is a lot of info out there. I spent a lot of time researching and reading over the past year as energy allowed. The March post on my wellness blog is about EBV with several links listed at the bottom of the article. Check it out if you'd like. I wish you well soon!
BackToLifeWellness.blogspot.com

Hi @luannkelly. I'm sorry you are going through this. I pushed myself for a year continuing to work full time and then had a relapse on a relapse and couldn't even sit up long enough to work so I had to quit my job in 2017. It has been a roller coaster ride since, but am working with a doctor now who had specialized in CFS/Fibromyalgia for 20 years. I am seeing improvements. You are right -- stress makes it worse (good or bad stress) and you are NOT alone. You can read more about EBV and some of my story in the March post of my wellness blog. http://www.BackToLifeWellness.blogspot.com
I list several helpful links at the bottom of the article. I try to stay positive. Even though this illness has taken so much, it has also brought many of my blessings to light. I look at life differently. I wish you the best on this healing journey!........Marianne

So do you consider the CAEBV and the reactivated EBV as the same thing? I get so confused.
I thought I felt a bit better and then 3 days ago, I woke with terrible pain in the back of my neck and on the left side to the point I can hardly move it . Fever is back and it's starting again.

I was told I have CAEBV and no cure or real way for it to go to remission.

I better get to reading more books and articles.

If anyone can tell me the difference between Reactive EBV AND CAEBV I would be grateful!

Suesm

@mrmie this is Sue. I looked up some info but I can't be sure about the difference between Reactive EBV and CAEBV as far as treatment for a possible Remission. Do I do the same anti virals and diets? The books and posts just say with CAEBV TO have it checked but no real in depth information just on it.

I did look into the book that was mentioned. I couldn't afford her classes at $1,000. I don't have alot of extra with my Disaby income. It feels like I am in a hole and I just keep falling.

Suesm

@suesm. Hi Sue. I'm not a doctor so I can't diagnose. I can only provide information I have learned from my own experience and research. Given your symptoms of fever, left side pain, and neck pain, I'd highly recommend calling your physician and getting an appointment as soon as possible. Maybe you have already done that. CAEBV and reactivated EBV are used interchangeable many times which makes it all more confusing. From what I have read from the National Institutes of Health (NIH), CAEBV will show markedly elevated levels of EBV DNA in the blood (usually a PCR test). This test is different than IgG, IgM, and early antigen antibody tests. According to the NIH, CAEBV is a rare, severe form. https://rarediseases.info.nih.gov/diseases/9534/chronic-active-epstein-barr-virus-infection ....The classes you mentioned are expensive. I totally get that! Her book contains a lot of helpful info though. And if your doctors say every thing is fine and there is nothing you can do but rest, you can look into an integrative medicine physician. They are typical MDs who specialize in integrative medicine and are often a part of insurance plans. You could check with your plan and see if one is available. Continue to read all you can. Don't give up! I wish you well soon!!!

Thank you so much. I should just keep on reading. It's people like you and others that keep me going. God bless!

I'm trying to find some help with my mystery! Background: in 2006, I had a result of EB VCA IGG AB of 4.95 (range of 0-0.90), negative for Mono. These were the only EBV related values tested among other random blood testing - I can't for the life of me remember the history (I believe I was having sinus issues) but do remember the doctor saying 'it just means you had an active EBV infection at some point in time'. Fast forward to early 2016 –I saw my primary with complaints of fatigue, forgetfulness, absent-minded, no focus and headaches (I had a bad sore throat three weeks previous). He referred me to a neurologist suspecting Adult ADHD. I did see the neurologist who after an exam and questionnaire told me I had Adult ADHD. I thought she was crazy so I didn’t go on meds and continued with life. Two years later (2018) I went back to my primary (and the neurologist) again with memory loss, headaches dizziness, fatigue and lack of focus. After an MRI of the head showed nothing, she again diagnosed me as ADHD. I finally figured I’d give the meds a try – they helped so I accepted it. Even with meds, I still dealt with headaches, never woke up feeling refreshed and tired easily.

CURRENT STATE: About 2 months ago I had my annual exam where they ran the typical blood / urine tests. About a week after, I started with a high frequency to urinate (but no pain), pressure/nausea in my abdomen, diarrhea and terrible headaches. Urine showed a bunch of red flags so dr re-did my urine. That test was much cleaner, no bacteria but symptoms persisted so dr treated me for a UTI. After a week of Levaquin (yikes), same symptoms persisted. So far I’ve seen a urologist and gynecologist; had a pelvic & Ab CT with and without dye, CT of the head, another week of a different antibiodics – all tests have been negative. I switched primary dr’s and the new one ordered about 7 pages of blood work. While waiting for results, my GI symptoms mostly went away but my fatigue has increased and now I have bad muscle/joint pain. The only thing that came back from bloodwork was EBV: EBV VCA AB (IGM) normal (<36.00), EBV VCA AB (IGG) positive 400.00 (range >21.99 is positive); EBNA (IGG) normal (<18.00). Doc says “I found out why you’re tired, there’s evidence of prior EBV exposure, your levels are significantly high so I believe you had a recent exposure. Doesn’t explain your other symptoms so see a GI next.” I did tell him about my past result in 2006 and he says, it’s a reactivation – you need rest and limit alcohol but see a GI. I’m barely able to complete work tasks, even with light activity I’m tired and achy and my pain seems to move to different parts of my body – from my lower back, my wrist, my neck/traps, my left outer thigh/hip to sometimes internal type pains (dull aches). I’m not sure where to go from here but the more I read, the more EBV seems to be a cause for all the other issues. But it’s really hard to tell what are high EBV values vs “past infection” levels. Any thoughts or advice? Or suggestions on which dr to see next? I'm wondering if my ADHD is really CFS or something related to EBV?? Thanks!

I forgot to mention, for the last week my face feels flush and I'm also have trouble swallowing (where when I eat I can't fully swallow my food without a drink). I have stopped the ADHD meds just to eliminate that causing symptoms.

Hi @diggydo27. I'm sorry you are feeling so poorly. I have dealt with recurring EBV and chronic fatigue. I'm glad your doctor recognized recurrent EBV. Some doctors don't. I cannot diagnose or treat, but I'd be happy to answer some of your questions and share some information I have learned. For more information on interpreting EBV lab results, I recommend https://ebvhelp.com/labs-diagnosis/ . Your ADHD symptoms are common in those with chronic fatigue syndrome and fibromyalgia. Sometimes it is referred to as "brain fog." There is also a theory that EBV can affect the vagus nerve which can cause some GI symptoms. There is a high percentage of people with EBV, CFS, or fibromyalgia that have GI complaints, leaky guy, SIBO. Most of our immune systems are in our gut, hence the connection. As far as your question about other doctors you should see -- I would definitely keep your primary care doc informed on your condition and see GI as already recommended. I have found that most people dealing with this type of illness have better luck with an Integrated Medicine doctor, functional medicine doctor, or a naturopath. If you'd like to understand more about EBV, please feel free to check out the March post on my wellness blog at http://www.BackToLifeWellness.com. I share info on EBV from the unique perspective of the virus itself and intertwine part of my story. At the end of the post are several links that may be helpful. (I do not make money off my blog. There are no ads. It's there simply to educate the public on wellness topics :)) Oh, one more thing. You mentioned you have migrating pain. Have you been checked for Lyme disease? A good resource on that is Dr. Bill Rawls, MD (RawlsMD.com). I wish you answers and healing soon!! ....... ~Marianne~

Thanks @mrmie ! I was actually tested for Lyme as part of my massive panel and it was negative. The only other items that came up were slightly elevated Calcium and Albumin (by slightly I mean .1 over the range). I did find an article that reactive arthritis can be caused by an infection in another part of your body (most often your intestines, genitals or urinary tract) but I'm not sure if this is a stretch (arthritis is in my family history). Thanks for the links, I'll take a look!