Is chronic reactivated EBV different from chronic active EBV?

I am 20 years old, I got mono for the first time in 6th grade. It reactivated in high school and my doctor says I got meningitis from it. I've now had mono 12 times and I have yet to find a doctor who knows anything more than to rest and drink water. I have had so many complications- unexplained weight changes, HUGE spleen swelling, septic tonsils, neck and back pains. I need some answers or suggestions at the very least. What have others found that helps? Has anyone found a doctor who takes this seriously?

Hello @yomynameischlo, welcome to Connect. Getting diagnosed with mono 12 times in what sounds like an 8-year span must be a lot to deal with. While we wait for the other members of this discussion to share their experiences with you, would you be comfortable sharing a bit more with the group? Do your providers think all of these complications are connected? How have you tried to manage the symptoms?

This discussion may also be worth taking a look at and participating in as well, https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/.

HI @yomynameischlo. I too am dealing with recurrent EBV infections. It sounds like you have had a time with it having all those other issues. They sound serious, so I hope you have a doctor who can monitor those things. What has helped for me is diet change (cutting dairy, gluten, eggs at first, to name a few), supplements, lifestyle change, lots of rest, and not pushing myself. I'm also taking L-lysine and just started Lauriciden (monolauren). I have not found a conventional doctor who takes this seriously despite all my EBV antibodies (even active antibodies) out the roof and having debilitating symptoms. I had to leave my job and am soley focused on healing now. There are some doctors that can be found online who have a wealth of info on these sorts of illnesses. I currently am following Bill Rawls, MD Restore Kit Vital Plan. Other ones worth looking into are Evan Hirsch, MD (Fix Your Fatigue - book and website), Rodger Murphree, DC (yourfibrodoctor.com). They offer non conventional treatment. The only treatment from conventional doctors that seems to help some is antiviral medication (Valtrex, Zovirax). I'm taking Valtrex too along with my other stuff. I can't diagnose or treat, so these are only suggestions. I'm sorry you are going through this at such a young age. I was 21 when I had my first bout of recurrent EBV that lasted most of my twenties. However, now there is the internet so it is much easier to come across information. Even joining an EBV Facebook group can be helpful just to find out what is helping others. I learned a lot from doing that. But of course you have to sift through the info and do your own research as well. I'm sure there are others on here who have more to add. Hang in there! Please let us know how you do.

---How does one make an appointment for a EBV workup with Dr. Cohen?
---Does Dr. Cohen have criteria for accepting a patient to evaluate?
---I have had 4 tests that were performed under the test name "EBV Acute Infection Antibodies" plus some other tests with skewed values.
---Does NIH have an appointment protocol to follow?
---I found online what I presume to be Dr. Cohen's nih email.
---Have you found any other doctors in the Washington area who are very knowledgeable about EBV?
Thanks.

Hello everyone. I am taking a step of faith by posting on this feed. I hope that it is still active and that someone can help me to understand what is happening or possibly help point me in a direction that makes sense.

I went to the doctor in August of this year because I had been so fatigued that I often thought I was going to faint. I have never ever in my life felt so tired. At times, breathing felt like it too all of my energy... as crazy as that sounds. My doctor ordered a bunch of tests and one of them was for EBV. The results came back confusing to me...
My doc told me that I had a recent infection of EBV, but he assured me that I didn’t have mono nor was I contagious.
Based on what I’m seeing... it looks like both antibodies are elevated. Which looks like both a past and a recent infection. Regardless, it has been 5 months and I still feel terrible.

Here are my lab results:

EBNA >600.00 positive
EBV VCA IgG >750 positive
EBV VCA IgM 58.8 positive

In all the threads and forums I’ve seen... I haven’t seen anyone have all three of these test positive. What does that mean? Is this a reactivated EBV or a new infection? Thanks!

Hi @jnrbutterfly . I too have had a positive IgM. My VCA IgG, EBNA, and early antigen were all above what the lab could detect. It looks like you either have a reactivation or this is your initial infection. If you are an adult, I'm guessing it's a reactivation. I got my initial infection at age 20 and now in a reactivation in my forties. Over 90% of the population has EBV sleeping in their body. It is a herpes virus (Herpes-4 to be exact) so like other herpes viruses it can awaken. Stress, whether physical, mental, emotional, can trigger it. Once I was fed up with it and the fact that my doctors were not taking my symptoms seriously, I began to do research on my own. I became a part of some EBV Facebook groups to see what was/wasn't working for others in my situation. Then researched some of the things that popped out. Some of the things that have helped others are nutrition (cut out processed sugars, gluten, dairy, eggs...), herbs, antiviral meds, changing lifestyle (decreasing stress as much as possible), and other supplements to support deficiencies (like iron and zinc). Is there anything that you have tried over the past 5 months. There are some resources that may be helpful for you. http://www.ebvhelp.com is run by Kasia Kines, PhD who just wrote "The Epstein-Barr Virus Solution." Rodger Murphree, DC has treated thousands of people with chronic fatigue syndrome. He also has a book called "Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome." Jacob Teitelbaum, MD is a great resource as well. His website is http://www.vitality101.com. It takes patience and persistance!!!

Thanks for the information

@mrmie thank you for you response and the encouraging words. I really appreciate that! I avoid gluten and refined sugars. I try to eat as clean as possible. I have also been diagnosed with Graves’ disease in the past and find it rather interesting that based on some things that I have read, there is a link with EBV. I will try to figure out what supplements I want to add to my regime... I currently take coconut oil and turmeric daily. I also take colloidal silver and vitamin D.
My doctor as kind as he is, doesn’t seem to be very helpful. But regardless I am 35 and should not consistently feel this rotten.
Are there any supplements that you would suggest that you feel work really well? I have read that oregano oil is good to take.

Just saw the links in your post! I will check those out!

Just diagnosed, but it gets really scary when you read NIH research for CAEBV!