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bfoxx
@bfoxx

Posts: 1
Joined: Jul 31, 2018

Chronic EBV - Help

Posted by @bfoxx, Tue, Jul 31 1:25pm

Hello,

Hope everyone is well.
I am a 28 year old female.

Last year I was diagnosed with chronic EBV. I was so sick that I had to take FMLA from work and ultimately left that job to rest. I have felt tired, generally bad, and sore since. I feel so bad about myself, I go to the psychiatrist for the mental side of it, but sometimes I just wonder if I will ever catch a break.

I have since started a new job, and guess what? I am have a terrible flare up. It's been active for over a month now. It is attacking my chest, and throat. (Had my tonsils removed last year due to this, because they were flaring up with infection) Financially I can't afford to stay home, but it is interfering with every single aspect of my life. Since last year I have divorced, became a single mother, and dealing with this terrible health issue.

What do you recommend for everyday care? Other than stress management, what does everyone else do to try and avoid flare ups.

I am just so desperate. Should I see an infectious disease specialist?

Absolutely any advice would be helpful. It's to the point where I am just feeling so alone with this.

Thanks!

REPLY

Dear Bfoxx,
My heart goes out to you. I too have been battling CEBV for the past year. I am retired at the age of 64 and have slowed down considerable from my active life. I don't believe I would be able to work at this time at least not at the position I held for over thirty years. The stress and physical needs of my career would be over whelming.
Over the past year I have seen numerous doctors and inquired at numerous medical centers about treatments. There is no clear path to getting treatments. When I went to an Infectious disease specialist I was given the diagnosis of EBV but no recommended treatments. The only help and encouragement that I have received from the medical world is through Holistic practices. The holistic doctors I have seen concentrate on nutrition and alternative medicine. Unfortunately very little is covered by insurance. I have just started a series of Amino Acids shots to build up my immune system. This is not a cure but I hope it will prevent me from getting worse and help me fight the fatigue. I also meditate and work on my mind healing my body.
I wish you the best and don't give up with looking into every possible solution. By sharing our stories we learn from each other and give moral support.
Bless you and keep positive,
MichelleBelle

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