Oh so we feel alike. Interested what immune did you find? For the drs to test? Unreal we have to tell them

Hi antivirals did help me and gave some relief from the reactivation of mono. It turned out to be Epstein Barr after many times requesting a blood test. My regular doctor an internist recommended them. I went to a very expensive infectious disease doctor and there is no cure only some treatment with antivirals. There r surgical treatments in Germany and Belgium where A famous female singer went and is now touring. The infectious disease doctor said just treat the symptoms as they come. A doctor from the national institute of health is working on some injections for prevention and different stages of Epstein Barr.

Hi @mblack I am so sorry to hear of your illness with EBV. I would recommend you see an Intregrative Medical practice. They seem to know more and are more willing to help you treat this illness. I have been battling this virus for over 30 years. I was a young mother with two sons, a 3 yr. old and a 10 yr. at the time, and did not have time to be paralyzed in the hospital for 3 months with Guillian-Barre' Syndrome, brought on by the Epstein Barr Virus. It was a few years later that I discovered the Reactivation of EBV. For some reason they were unsure if the EBV caused the Guillian Barre' when I was in Duke University Hospital, I think they were scratching their heads! So a few years later when I was very debilitated and worried the GBS was coming back. I insisted the Dr. run the test and that's when I discovered the culprit. I have had much experience with this virus and I can say the only thing that I've had success with is a high nutrient clean diet along with supplementation of natural supplements. I have just started an anti-viral so the jury is still out on that result.

My first success was by utilizing the protocol from a book by Dr. Jesse Stoff, titled Chronic Fatigue Syndrome/AKA Epstein Barr Virus. I found it in a book store after my infectious disease specialist said he could not help me. Basically I was tired of being tired and decided I would learn as much as I could on my own about the disease. His protocol is specific to diet and supplements and I followed them religiously. The supplements were expensive but it was worth it, I was back on my feet in 3 months, after being debilitated for 9 months. I believe this book is still available on Amazon.

Unfortunately, I let me guard down and thought I was cured. You are NEVER cured from this virus, it may go dormant and your titers may go down but it will come back if you don't take care of yourself. I got complacent, stopped taking so many supplements, did not watch my diet, or get the rest I needed. Our family was under tremendous stress and my immune system could not handle it. To make a long story short, I started having symptoms of joint pain, fatigue, persistent illness, again in late 2015, and test results showed the EBV was back again. I thought surely, it's been over 30 years they must have figured something out by now that can treat this virus!! When I started researching again all I found was the anti-virals, supplements and nutrition. I did find that an Intregrative medical practice is much better equipped to help than a regular GP, or an Infectious Disease Specialist. I changed my Dr. immediately. I am being tested regularly, to know if we are making progress, and I have seen progress with lowering my titers, but then I caught a cold and they went right back up again. So now I am on an anti-viral along with the following. Vit-C, Turmeric Curcumin, Magnesium Complex, Methyl B Complex, Olivir 15, Oil of Oregano, CoQ10, Zinc, Monolaurin Supplement, L-Glutamine, Move Free Joint Health, Multi-vitamin, Calcium, Omega. All to give me energy and to build up my immune system again. I am now 66 so it is a little bit harder I think. Yes it is a pain taking all of these supplements everyday, but it is keeping me mobile and hopefully will build my immune system up enough to put this monster back in a dormant state.

Everyone's system is different, and everyone will not respond the same to a certain regimen. I was hoping there was a magic pill for this disease by now, but that is not to be. I would highly recommend getting in with an Integrative Medical Practice, so you will have an ally in this fight. They will be able to recommend and prescribe what you need and can keep watch on your liver function on a regular basis among other things. As we all know everything we put in our mouth is filtered through our Liver and EBV effects our Liver so that does need to be monitored.

For all of you out there fighting this disease, I hope my story is not a downer. The good news is, if we take proper care of ourselves, with nutrition, supplements (because we seem to need more than most folks), and proper rest....you CAN get the EBV Virus to go dormant again. BUT the bad news is you cannot let your guard down, if you have Chronic Epstein Barr Virus. It is always lurking in the background waiting to activate if your immune system is not optimal. So be good to yourself, pamper yourself and don't feel guilty about it. It's mandatory for the battle you are in for your health and survival.

Thanks for listening to my story and I hope it helps.
Blessings,
@kkathysan