Treatment for chronic Epstein-Barr virus (EBV)

Hi @cstrandberg Welcome. No, you are NOT going crazy! My story is similar to yours. I also had mono at age 20. My latest major relapse of EBV was at age 43 (although not recognized by doctors -- even with a positive IgM). I am now 47 and am just starting to get back to life after a wild roller coaster ride of ups and downs. I now know that CFS was most likely the cause of my EBV relapses. Unfortunately CFS is not taught in most med schools and most of the conventional medical community does not understand what this disease is and what it does to the body. Even the Mayo Clinic website is not up to date. However the CDC is. You can search for info about CFS at their website cdc.gov. There is even a section you can print off for healthcare providers that explains the pathophysiology of the disease and that it is a REAL disease. Keep in mind, doctors thought that those with MS were crazy before the advent of the MRI. They actually called it hysteria until the MRI came along and showed that there was deterioation of the protective sheath around the nerves....... There is a lot of current research in CFS now and it is promising. Hopefully conventional doctors can get up to date on what this disease does to the body and how devastating it can be. I will leave a few links you can check out of you'd like. https://solvecfs.org/what-is-mecfs/ https://emerge.org.au/ If you'd like to hear more about EBV and some of my journey you can check out these posts on my blog https://backtolifewellness.blogspot.com/2019/03/the-sleeping-giant-in-us-all-epstein.html
https://backtolifewellness.blogspot.com/2019/01/welcome.html
It is possible to recover! I have made tremendous strides this year since working with Dr. Rodger Murphree and doing the DNRS program (www.retrainingthebrain.com). Less than a year ago I could not walk from my bedroom to the kitchen without having to sit down. Last month I enjoyed hiking for a few days in Kentucky! 🙂
I hate that you are going through this and wish you well soon!!!

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

Thank you for your help and information I will get the book

Has your son had the gardasil vaccine? My 20 year old son has been I'll since he had it at the age 13. Erectile dysfunction, epstein barr, the rash is gianotti crosti. 1000's of people have become I'll after having it. They are testing positive for epstein barr, bartonella, pots, lyme disease, even when they have had no contact with a tick. There are many more symptoms and diseases. Most reported cases are girls. Read the inserts of your vaccines, they will even say they can cause some of these. Read about the reports. Look up all the countries that have banned gardasil HPV vaccine because of the deaths, diseases, and illnesses. All these symptoms mimic so many things. The doctors these days are are blind to what's going on, they have no idea.

My 20 year old son has been sick since he had the gardasil 9 vaccine at 13. 1000s of people who have had it, are testing positive for epstein barr, pots, bartonella, lyme disease, when they had no contact with ticks. My sons rash was gianotti crosti, very rare especially for his age.

Have you had the gardasil vaccine for HPV? My son was in every sport since kindergarten, very athletic. He got that vaccine at 13, hes been sick ever since, hes now 20. Thousands are are after having it and testing positive for epstein Barr, pots. Bartonella, lyme, many many more.

Once I had EBV (later in life in my 50's) I have had lower immunity and more fatigue than I had previously. I did see where there are several doctors getting close to a vaccine for EBV, which would be great. For those replying here.....have doctors ruled out Guillan Barre syndrome (I'm sure my spelling is off). My brother in law had EBV a couple of times and then developed the much more debilitating Guillan Barre. It can be acute and chronic and very difficult to manage. EBV can also cause several cancers. I hope they find more help and information on EBV and a vaccine soon. Hugs

Yes, my son got the gardasil vaccine at age 14. I have been wondering for years if this could be the culprit for all of his illnesses, including Chronic Epstein Barr. He now also has Hashimoto Disease and Dysautonomia. I am now blaming myself for letting his pediatrician talk me into letting him get this vaccine.

Jonathan, I was diagnosed with Mono last Oct., and I have been sick ever since - 5 months and counting. It is looking like I will have to quit my job, since I absolutely can not work. I am still looking for answers, and also wondering if I will have to live like this the rest of my life. Just know that you are not alone, and others feel what you feel. That's not much to offer, I know. I am pursuing every avenue, even though I live in a very small city with not much to offer. I am astounded that people have been living with this for 20-30 years. How do they keep hope going? I watch family and friends living their lives with happiness and energy, and I get so angry. I need tips on how to keep going when I feel like throwing in the towel. What's the use? This is not living.

@nataliem I had mono long time ago I had the mono rash and high titer score . My Mom took me to my Dr she did blood work and sent me home to bedrest for 2 months and loads of vitamins It was so long ago I cant remember all the meds but I never had it again I worked 17 hrs a day after that so I don't understand how you all who say they have Epstein Barr have it for months ,years. Haven't you gone to you Dr ?