Hi to you. I’m new to this site and have just recently found EBV to be the cause of symptoms experienced for over 20 years and two boughts of cancer How’s it going?? Could you feel comfortable corresponding thru email?
I’m most interested in your present circumstances and achievements with this crazy
Virus. Thanks so much! Janeen
Liked by John, Volunteer Mentor
Hello Janeen (@joyisjah), Welcome to Mayo Connect. We are glad you found us. Connect is a good place to share your health concerns, ask questions and learn what other members with similar health concerns are doing for treatments. From your post I was not sure which member you were asking if they could feel comfortable corresponding through email. Normally in long discussion threads it’s a good idea to use their Connect username (@username) which will send them a notification along with your post.
Members can send private messages (PM) and if they are comfortable exchanging personal email addresses. I think this is a good way to stay in contact with other members but I would urge members to consider if the information being shared would benefit or help other Connect members. Sharing what works for you really helps others that are seeking answers and is much appreciated. If you want Step-by-step instructions to help you get the most out of Connect see the following page:
— https://connect.mayoclinic.org/get-started-on-connect/
Janeen, if you are comfortable sharing, can you tell us what helps or what you’ve tried for treatment for EBV?
John
Liked by Colleen Young, Connect Director
Hello @joyisjah,
I see that you are wondering how @shellr13 son is doing since last year. You mention replying by email. It is important to remember that posts on Mayo Clinic Connect are public, but should you choose to want to communicate privately with a member we recommend using the private message function by clicking on a member’s username. If you are comfortable talking publicly, sharing your experiences and listening to others’ experiences is what makes Connect valuable. We often don’t feel like what we have to say is of value to others, but it is amazing what your experiences can mean to other members.
It is also important to remember that if you are replying by email, it still shows up in the public discussion, so I always recommend clicking on VIEW & REPLY to see the whole discussion on the website.
@joyisjah, if you are comfortable sharing with the group, are you experiencing symptoms of EBV? How are you managing them?
Liked by John, Volunteer Mentor
First of December I woke up with my right hand stiff, swollen, painful and unable to use my fingers. Be the end of the day, EVERY joint and bone was painful. I could nothing. Doctor thought it was Parvo virus B 19. After three weeks, no change. Tested positive for EBV. Which is strange, because I’m 61 and a nurse. Surely, sometime in my life I would have been exposed to it. I manifested itself as a rheumatoid arthritis flare. The only thing that would give me a little relief was the oxycontin I had left over from spine surgery. Imagine lying in bed cold, but you can’t pull the cover up because of the pain on your fingers, wrists, elbows, shoulders because of the pain. No toliet hygiene unless husband helped me. I did notice that taking the 10 grams Vitamin C did help.
Liked by nacc
Hi, thank you for writing this. I came down with extreme fatigue. I was tested for EBV and I have a case where I was never exposed to it
until now. I've had it for 6 months. I can't hardly do anything. I need help and don't know what kind of doctor to go to. My PCP wasn't too nice my last visit. Just said it's like you have mono, and it will take awhile to get over. I don't know how to proceed to get help with this.
Having EBV is very frustrating. I have been battling this for more than six months. I had heard some time ago about an Ultra Violet treatment that my girlfriend had over 25 years ago. It took me a long time to finally find a doctor here in Florida who offers this treatment. I believe my two doctors were just assuming I would get better over time and weren't recommending additional treatments. Well I got tired of waiting. I started the five week treatments two weeks ago and have also added a hydrogen peroxide IV. I have two treatments a week. I have a bit more energy now and plan to continue the full treatment. I'll keep everyone posted over the next few weeks and let you know if this helps with my chronic fatigue.
Liked by John, Volunteer Mentor, dandy
I have tried 2 UV and Ozone treatments like what you describe. I hope to start up more sessions when I am done with some travel. I will report back as well as to if they help!
Liked by John, Volunteer Mentor
Hi @michellebelle — here is some information I found about ozone treatments that may provide a better understanding.
Newsmax.com article in their NewsMax-Health: Ozone Therapy: Hope for Chronic Illnesses
— https://www.newsmax.com/health/health-news/ozone-therapy-treatment-cancer/2015/03/20/id/631395/
I also found a video that may be more relevant.
Epstein Barr Virus Disease (EBV) KO'd by Oxidation Therapy – YouTube
— https://www.youtube.com/watch?v=eULdPNUuTbE
John
Liked by Lisa Lucier, dandy
@michellebelle
Yes, I did read the book Thyroid Healing and did appreciate the ‘diet solution’. I’ve always had a healthy diet so following his suggestions hasn’t been too hard. I just don’t do the juicing that was suggested. I’d rather eat ‘plants’ than drink them. I do drink vitamin water and love my low sodium V8 juice though I’m sure it doesn’t have nearly the amount of fresh healthy vitamins that juicing has. I’m always up for suggestions. We all should keep a healthy plant based diet however, I haven’t noticed any change due to diet since there wasn’t much for me to change.
Liked by John, Volunteer Mentor