Treatment for chronic Epstein-Barr virus (EBV)

I was just told today I have chronic EB. My last labs showed a had a recent flare and according to the doctor it was acute. I am now having another flare just weeks after this last one. I was referred to an Infectious Disease Doctor to try to determine why it keeps reactivating. I have a terminally ill 2 year old granddaughter who lives out of state. I am terrified i will never get to see her again since she is so fragile. I have no idea what the warning signs are that I am reactivating. I was told many years ago that I have Fibro so I stay fatigued. I am 65 and have no idea what to do. My insurance only covers the county I live in. Frankly, I am scared.

Hello @chickie001, I combined your EBV discussion with a discussion titled, "treatment for chronic epstein barr." I did this so all of the members currently discussing have EBV and how they are managing it would see your post and share their thoughts.

@chickie001, while we wait for others to share their thoughts with you, would you mind sharing what your provider told you about it being acute? It is good that you were referred to an infectious disease doctor and that your provider seems willing to help you find the answer.

I was just told today I have chronic EB. My last labs showed a had a recent flare and according to the doctor it was acute. I am now having another flare just weeks after this last one. I was referred to an Infectious Disease Doctor to try to determine why it keeps reactivating. I have a terminally ill 2 year old granddaughter who lives out of state. I am terrified i will never get to see her again since she is so fragile. I have no idea what the warning signs are that I am reactivating. I was told many years ago that I have Fibro so I stay fatigued. I am 65 and have no idea what to do. My insurance only covers the county I live in. Frankly, I am scared.

Fibromyalgia is a group of symptoms. And instead of the doctors trying to get down to the root cause, they blame all of your symptoms on fibromyalgia which is just more symptoms. There can be multiple causes to these mystery illnesses such as fibro and chronic fatigue syndrome. Reactivated EBV is what I am dealing with. I recommend learning all you can on your own and follow up with your doctors as instructed. I recently watched in online summit hosted by Dr Rodger Murphree. He treats fibro patients around the world and has a lot of info on his website http://www.yourfibrodoctor.com. William Rawls,MD is another good one. I started his protocol 2 months ago and am excited to have experienced improvements. http://www.rawlsmd.com. It is completely normal to feel scared. Know that there are others struggling with this too and we care. I wish you wellness soon and peace and comfort to your granddaughter and family. Keep us posted on how you are doing, if you have questions, or simply need to vent.

Hello @chickie001, I combined your EBV discussion with a discussion titled, "treatment for chronic epstein barr." I did this so all of the members currently discussing have EBV and how they are managing it would see your post and share their thoughts.

@chickie001, while we wait for others to share their thoughts with you, would you mind sharing what your provider told you about it being acute? It is good that you were referred to an infectious disease doctor and that your provider seems willing to help you find the answer.

I am learning all I can about EBV. Thinking back I have had several..I guess you call them flares. Anyway from what I understand there is an incubation period with no symptoms but you are contagious. I have a couple of people in my life who have very weak immune systems and the doctor told me I shouldn't be around them..especially now since it is active. How do you know when you can be around people?

Hi @chickie001 That's a good question and a grey area. I would follow what your doc says since he/she knows your unique situation. Over 90 percent of humans have been exposed to EBV and therefore have antibodies to protect them if exposed again. We never get rid of the virus though. It basically sleeps in our body and then can be awakened when our immune systems are down. This can be caused by stress, poor diet, environment stressors, genetic weaknesses. From what I have learned, there is no one means to putting it into remission. Many have been helped by cleaning up their diet, supplements such as L-lysine, Lauricidin and others, Valtrex, tackling stress, taking up yoga, meditation. A good resource is Kasia Kines, PhD. She just wrote a book on EBV called The Epstein Barr Solution. Her website is ebvhelp.com. ....Sorry I don't have a straightforward answer to your question about contagiousness! The main thing is to focus on getting well-- taking care of yourself. Doing your research and doing things that you think will help you.

Hi, all! I have been on a similar journey to you all for the last 8 or so years. I caught mono in high school, and not long after I went to college I became ill with the first of my chronic symptoms. It first started with swollen lymph nodes, migraines/sinus headaches, congestion/runny nose/sputum, constant low grade fever, raynauds syndrome, chronic fatigue then eventually progressed to sinusitis. I felt like my body was in constant over drive 24 hours a day. I tried every antibiotic and steroid I could and found no relief. I was also constantly getting sick with other visurses (strep, stomach virus, flu, pneumonia, etc) After seeing my immunologist/allergist he ran tests that showed my ebv levels were high, and explained to me that also discovered my T cells do not work properly. I was also told my I was also not allergic to anything but dust. He also ran ANA tests and they all came back negative. I then went on to see an infectious disease doctor. All of my tests came back fine. Next stop was an ENT. They performed surgery on my sinuses and that helped a bit, but later the infections came back. These symptoms have remained for the most part, but there have been new chronic symptoms that have been adding on top of the existing over the past few years. I also started to struggle with IBS, extreme migraines through out the week, and dry eyes. The dry eyes have gotten so bad since last year that my eye pain is constant. After seeing several eye specialists I have learned that the symptoms of dry eyes are the response to inflammation. I also now have 1 droopy eyelid. My neck (lymph node) pain has increased, low back pain, joint pain, constant dehydration, ulcers in my mouth, and low brain function/foggy thinking. I’m currently 27 and just retested for ebv. And yet again, it’s incredibly high. I’m starting to read the medical medium book and take it seriously because I feel like the virus is taking over my entire body. My next step is to find a naturopath that knows something of CAEBV as well. Will keep you all posted on the book and scouting out a naturopath.

I recently tested with very high levels of EBV, 24 years after suffering from Mono at 16. I was dealing with chronic sinusitis and was sick at least monthly, every bug got me and turned into a sinus infection. Saw a physician who prescribed Acyclovir (Zovirax), often prescribed for Herpes. I take it 1X daily if I'm feeling well and increase up to 3X daily (dosage on the bottle) if I'm not feeling well. It seems to help with getting sick and I've been sinus infection free for almost 6 months. I would still say I need lots of rest (not easy with a 4 yo) but definitely have some improved quality of life with taking this prescription. Would love to hear more about natural remedies as well. Hoping you have made some progress and are feeling better.