Treatment for chronic Epstein-Barr virus (EBV)

I am so sorry to hear of your son’s debilitating episode with EBV. It is so sad to me that such a young person has to deal with this in his life. Unfortunately we are all in a club none of want to be in. I would recommend seeking health care from an Integrative medical practice. They are more open to treatment with Anti-Virals and Supplements to build up his immune system so he can better fight the infection. I would also recommend he read this book, so he can be very aware of what his body needs and why. Chronic Fatigue Syndrome, the Hidden Epidemic aka Chronic Epstein Barre Virus Disease written by Dr. Jesse Stoff with Bernie Siegel, MD. You can get it off Amazon. Dr. Stoff has treated patients for years with this disease and studied Holistic medicine in England in his earlier career. It’s an easy read for an individual to understand and he outlines a protocol of supplements and diet that might help. When I got diagnosed with this disease in my 30’s, my infectious disease specialist could not help me at all. I had been suffering with pain and fatigue that had me on my couch for almost a year. Once I got this book and initiated his protocol and diet, I was back on my feet within 2 months. Now, have I had new flares with it since then? Yes unfortunately I have and I am in process once again trying to get myself back to good health. I’m now 66 years old, so it is taking longer and a bit harder than when I was younger, but I do think I will get there. I moved from my GP..who did not understand how to help me, and just wanted to subscribe rest. Rest alone will not get this demon of a virus to reverse Unless you give your body what it needs to repair. I am now seeing an Integrative Specialist who understands this is a lifelong struggle not just 8 weeks in bed. It is sad the medical industry does not take this illness more seriously. I am praying your son can get the help he needs, and will be able to reverse this trend of the disease. He is young but if he incorporates the diet and supplements needed for his body to fight back, he can recover. He’ll need to be determined and diligent in sticking with it, but it will be worth the fight!! God Bless!

Hello, @catzarecool – Welcome to Mayo Clinic Connect. I am happy you replied to this thread and hope the conversations help as you work through your son's condition. Seven years is a long time to be dealing with EBV. Your comment, “He can't stay well and doesn't remember feeling truly healthy,” really hit home with me. I see @kkathysan replied to your post, but I also wanted to bring @cummings3 @nataliem into the conversation in hopes they can also share their experience and knowledge.

Thank you. We really do need to talk to others. This is depressing. He is thinking of isolating from everyone and everything now because he just can't stay well. I am scared for him because this is a long time to have swollen abdominal lymph nodes. It's been since mid July, so almost 9 months.

I'm so sorry about the struggles your son is experiencing. It is very depressing, but try to get him to do things he enjoys, even if on a limited basis, as much as possible. Accepting this reality, which is the last thing you want, is extremely challenging. I have been sick since last October and still not able to go to work. Every time I try to go back, the stress involved brings back the fatigue, and I end up at home again. I have read The Wahl's Protocol, and I am trying to incorporate as many of her suggestions as I can. A change of diet has been helpful, and I force myself to do some exercise very day. I still need a nap by late afternoon, and my eyes still bother me (pain when looking up, and just needing to close them because they won't stay open), but I am much better than I was. I also went to a nutritionist, and I am following his supplement program - just natural food supplements. I don't know if they are truly helping, but I figured it was worth a try. I make a smoothie every day full of all kinds of fruits and vegetables that I normally would never have eaten, but now eat every day. I think food can heal you if you're willing to make the change, but it's hard. You just have to find the foods that work best for you - everyone is different. I truly wish you the best - none of us should have to be dealing with this. Where is the cure? Where are the doctors with answers? That's a recurring theme - there aren't any, or they live far, far away from me. Hang in there - you are not alone.

My EBV test just came back positive. Please any vaccine or treatment to stop the virus from leading to cancer

Hi @cedar234, Welcome to Mayo Clinic Connect. I have no medical background or training but from what I've read there is no vaccine to treat EBV. I've never heard of EBV leading to cancer. Here is some information about the test, what the results mean and how it's treated that may provide more information for you.

Epstein-Barr Virus (EBV) Test: https://www.healthline.com/health/epstein-barr-virus-test

May I ask where you heard or read EBV would lead to cancer?

The below information is on the American Cancer Society site. I’ve also seen it on the NIH.gov site. Hope this helps.

As with other herpes virus infections, EBV infection is life-long, even though most people have no symptoms after the first few weeks. EBV infects and stays in certain white blood cells in the body called B lymphocytes (also called B cells). There are no medicines or other treatments to get rid of EBV, nor are there vaccines to help prevent it, but EBV infection doesn’t cause serious problems in most people.

EBV infection increases a person’s risk of getting nasopharyngeal cancer (cancer of the area in the back of the nose) and certain types of fast-growing lymphomas such as Burkitt lymphoma. It may also be linked to Hodgkin lymphoma and some cases of stomach cancer. EBV-related cancers are more common in Africa and parts of Southeast Asia. Overall, very few people who have been infected with EBV will ever develop these cancers.

I am so sorry to hear of your EBV test. May I ask is this the 1st time you have had it? If it is, you may never be bothered with it again once your infection subsides. Take good care of your health especially while you have an active infection. Lots of rest. Extra supplements to build your immune system up. Hopefully it will go away quickly and you’ll get your energy back with no more episodes. For those of us struggling with Chronic EBV it is a life long struggle to stay healthy. Yes it can cause certain forms of cancer, but I don’t think that is a given that it will. And yes there is no vaccine. Definitely having EBV makes you pay very close attention to your health, because it is the only way to survive. I wish I Could tell you they have a magic cure but they don’t. Hang in there and pamper yourself. You will need it.

God Bless you!

I've been struggling with EBV for about three years now. I've been seeing a Naturopath for about the last two years, and have been taking a variety of things over the years to try to address the underlying symptoms and bring some healing, and have gone through blood, stool, and urine tests. I wonder though if I'm in the chronic category and there may not being any solid relief.
Here's what I'm taking over-the-counter: Vitamin D, Zinc, turmeric.
Here's what I'm taking as directed by my Naturopath: ImmPower ER, Alli-Cinn, BCQ, Mitochondrial NRG, DHEA, Biofilm Phase-2 Advanced, Monolaurin, N-Acetyl-L-Cysteine, Liver Support.
There are days when I'm feeling great (albeit rarely) and at least I'm not lying on the couch Friday evening thru Sunday just to recover and prep for the work week. I've ceased trying to look for a magic-bullet solution, but I would sure like to find something (if possible) to erase the sudden fatigue and brain-fog.

I am sorry to hear you are having this battle. It is not a club anyone wants to be in. I wonder if your Dr. is running EBV blood panels to see if you are having any progress with getting your numbers to go down. It sounds like you are doing a lot of the supplements that should help you. I go to an integrative Medical Practice and they are running EBV panels every 6 months to see if the therapy they are prescribing is helping. I have seen my levels go from Hi to within normal range on a couple of my test, but only to go back up if I caught a cold or something. It’s very disturbing, and unfortunately she told me at my last visit it appeared I just had a chronic case, after many years of battling this. I’ve been going up and down on this roller coaster for so long, I’m not sure I would recognize feeling really good if it were to happen. It is just a way of life now! I can say this about this Illness though. It does force me to pay attention to my health, eat healthy, make sure I get enough rest (which is a lot more than most people need), and NEVER miss the supplements and meds prescribed each day. If I don’t stay diligent, I go into a downward spiral that will last for months of pain, brain fog and fatigue. It does make me appreciate the good days when they come that is for sure! I did adjust my work schedule to part time last year, but I am now retirement age, and grateful for the chance to cut back my hours. Stress is very hard on managing this illness. I wish I could tell you there is a magic bullet, they started me on Anti-Virals last year which I feel like it helped some, so you may want to ask your Dr. about that. Stay diligent about taking care of yourself, I pray you can find the support you need to improve your daily life. Stay strong!