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Treatment for chronic Epstein-Barr virus (EBV)

Infectious Diseases | Last Active: 3 days ago | Replies (634)

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@cstrandberg

I had mono when I was 20. I'm now 52 and got very sick in July and my EA test showed reactivated EBV. I now think I have CFS. I'm extremely fatigued and weak/achy in the legs. Been through 4 specialists who can't find anything. All of them deny that reactivation can cause symptoms. Am I going crazy?

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Replies to "I had mono when I was 20. I'm now 52 and got very sick in July..."

No, you are not crazy! I've only had luck with an immunologist, naturopath, and acupuncture. High protein, high fat, low carb help. So does taking electrolytes. I use a Nuun tablet in my water every morning. Ultima is another good brand. Best wishes to you!

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!!!