Treatment for chronic Epstein-Barr virus (EBV)

@mtgirl43 Glad to hear you found the book Welcome to connect I had Mono in my 20,s I had the rash with it. Haven't had anything else till now Fibromyalgia, arthritis back problems. I wish you well Blessings to you

Thank you!

Hi @mtgirl43! Thank you for your reply and thank you for the information about the book "Medical Medium.". I will definitely be seeking a copy of this. I am just tired of feeling tired all the time with lightheadedness. All of my blood work looks good though I am told. If nothing else, I'm learning that the residuals of EBV, even after being "cured" are longlasting. I am beginning to doubt my sanity having felt fatigued for so long. Thank you for the information! I hope you get to feeling better as well!

Have they done tests for Specific Antibody Deficiency? this is my case and I suffer the same. it took YEARS to be diagnosed.

I highly recommend everyone being tested for Primary Immunodeficiency

Hi all, Did you see the discussion started by @donald23? He is looking for recommendations for how to stay healthy with EBV.

@airsleeper @mrmie @momnxtdr @justamom @michellebelle @dcbrenek and @lioness, you guys always have such wise advice. I'd really appreciate reading what you have to share from your experience.

@justme123 @katlyn57 @kjt1951 @gjul16 @tmccarthy2019 @mtgirl43 @lesliegrill and other new(ish) members, I'd like to get your thoughts too. Please add them to this discussion.

- EBV - How do you stay healthy? https://connect.mayoclinic.org/discussion/ebv/

@cummings3 I know the pain your son is in and it is terrible. I had mono when in my 20,s as stated my blood work showed a high lever on my titer. My Dr. at that time saw the rash I had with it . I was always tired. She put me on bedrest for 3 weeks and high doses of vitamins . I don't remember what they where as I'm 77 now . I hope you have found a Dr. who knows about EBV Now I have fibromyalgia,arthritis and CFS which I believe stemmed from EBV Good luck and hope you can find a good Dr. who knows about EBV

I am a 48 year old woman who had Epstein-Barr Virus when I was 19 yrs old. I dropped out of college so many times that eventually I gave up. From this virus I have developed Mitral Valve Prolapse. I have a friend who's son contracted Leukemia as a direct correlation from this auto-immune disease. I have suffered bouts of chronic fatigue, depression, anemia, low-blood cell counts, and now stomach issues and possible Diabetes. This disease has haunted me like an evil specter and I am so tired of seeing arrogant doctors who know diddly-squat about this disorder and think all woman are just hysterical drama queens. I am so fed up I don't lknow what to do. I called my insurance today and was told they have ENT-Immunologists but no Immunologists participating in my plan. WTF do I do ???????

Hi I was diagnosed in Jan of 2018 with this virus that is awful and basically gives you no life and you can never find help. I keep getting sicker and sicker lymphoma it causes they thought I had this in the emergency room a doctor did a partial gland biospy it was benign big deal there was a ton of nodes in my neck Right now 8 months since doc my neck and nodes it’s like pressure it hurts right now I have raised bumps all down into my esophagus, I have night sweats, sleep all the time, I have no voice and feel very viral 8 months since diagnosis. I’m dying and I know this.p, I feel it you can die from this no cure virus. Unfortunately the infectious dr said I insulted her Indian medical degree and kicked me out. Infectious, rare disease drs do nothing. The ER when your sick think your nuts my primary says nothing I can do oh it’s normal my mouth has white raised bumps and I can not swallow or have no voice?????oh it’s normal to barely be able to wake up and have a rash for 6 months neck nodes hurt chills throw up and I could not walk one day and hm I have sprained my ankle and achellis heel and I never fell. Stop with the standard comp blood panels and CBC that means nothing. I am going to Sloan Kettering where doctors do not swear at you, actually are intelligent and can help me know if I have cancer from this virus which u can get or if it’s just chronic EBV yes tested positive and got EBV DNA test. Can someone in this world make me feel better, I refuse to live like this EVER I am beyond shocked how some drs practice, they make up things and treat you like dirt so that last post stay away from those doctors

Hi @kittykiernan and @34micasita welcome to Connect. @kittykiernan you may have noticed I moved your post to this existing discussion on Chronic EBV so that you can connect with others who have similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

What both of you are going through must be so frustrating as you continue to have new symptoms arise.

I'd like to tag fellow Connect members @airsleeper @mrmie @momnxtdr @dcbrenek and @lioness as they have experience with Chronic EBV and they may be able to offer you support.

Back to you @34micasita do you mind sharing more about your stomach issues?

@kittykiernan how long untill you go to your new doctor?