Wow! I wish I had some great advice for you about the doctor situation, but honestly I don't. I only go to the doctor when I need to, because unless they are familiar with EBV and what that all entails, then they're only going to treat what they see on the outside. I am finding out though that there are naturopath doctors who are more willing to step outside the box, which is really what we need. I have also learned from usage and personal study that certain supplements play a huge role in getting our gut healthy, inflammation control, energy, and better sleep. I could not have done as much as I have been able to do these last two years without these supplements working on the inside of my body. By the way I use a great multi vitamin called XFactor, that is fully methylated (perfect for those that have the MTHFR gene mutation) and it is infused with a special blend of Aloe to help with absorption. Feel free to ask me questions if you're interested.

Wish that I had some great advice for you, also! My son was diagnosed with chronic EBV last year and is struggling with constant illnesses and fatigue. He never feels well and is supposed to be leaving for college in the fall. His primary care doctor has tried to get him in with infectious disease at Vanderbilt (after getting nowhere with local ID doctors), but they rejected his case. I called the Mayo clinic to try and schedule an appointment, but they do not see chronic EBV patients... only Chronic fatigue. We are in the process of trying several different supplements and seemed to have success, until a few weeks ago. He was hospitalized with a horrible bacterial virus that they are blaming on a tick bite? I am going to continue to take anyones's advice with the supplement recommendations in hopes to find something that helps! You may want to get your foot in the door at the Mayo clinic for your Chronic Fatigue Syndrome and take it from there.

Hello @airsleeper, I can understand the hesitancy to travel to Mayo Clinic in regards to cost. I would recommend contacting the Mayo Clinic Concierge Services department if you are seriously considering an appointment. Mayo Clinic Concierge Services in Rochester, Minnesota help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit free of any cost to you. You can get information about their services before you make an appointment using this link, http://bit.ly/2nM3mr0.

If you are curious about getting a second opinion, you can start that process by using this link, http://mayocl.in/1mtmR63.

@airsleeper, it sounds like you are dealing with a lot of different diagnoses. How are you managing them all currently? Have you asked if your physician is willing to give you a referral to Mayo Clinic?

I a man currently going through something similar to your son. I was misdiagnosed with fibromyalgia for almost 10 years. I started feeling weaker and my pain became debilitating worse than it ever has, lost my career because of it and couldn't walk 5/7 days for 3 months. I had my pcp run the full work up, my gut said there's something wrong. I ended up having degenerative discs disease which ended up after 10 years now it was only manageable and not treatable which my pain management oversees... within the next 3 months I had mono. I had it once when I was 14, then two months later and about 40 lb weight loss without trying they finally did more bloodwork. I started getting weaker naturally and then my blood work came back and I now had astronomical EBV levels and my positive ANA were back. I was diagnosed with CAEBV. I was down from 188 to 133 from May to December. My family thought I was doing drugs and my wife and her family who we live with were now scared worried. From January to now I have had lymphadenopathy over 5x, fevers that lasted over 6 days, swollen organs, on a 3500 daily calorie diet and about 4 weeks ago I was bit by a tick at work. Within a week I couldn't move my arm because it was numb but hurt so bad, it felt like there was so much painful pressure in the back of my head, list can go on. They put me on Doxycycline which made my body have astronomical ACID levels and I was taken off only after 2 weeks instead of the 4. Within 3 days I had such a bad rash on my chest, arms, back and face that my wife could see it in the pitch black, fevers, my pain is back to all time high, All my lymes tests have come back negative, my ANA is positive but so low that they don't do anything for it apparently, I literally feel like weights are on my body, and the headaches are horrible. in some ways I am in the same boat as your son. At 27 this isn't the life anyone should live.

Hi , i feel impressed to reply to your post . I'm so sorry you have been going thru this ! I was dx with fibro 20 years ago by a rheum dr. For my constant achiness. About the same time I started getting mono symptoms ...my pap said i had a deactivated case of mono..Epstein Barr...since then i continued to get flare ups . Right now my health has gotten worse: pain in the liver area , a facial rash , and extreme achiness and fatigue . I feel sure i am in the 4th stage of CHronic Epstein Barr...my current pcp just says it's stress ...i am stressed because i don't know where to get help.... he doesn't acknowledge the problem and has no idea what to do with me .

Thanks, Justin, for your input. I haven't responded since I posted because lot of
Things have been going on. However, I have gotten an appointment for early August and am all set to make
The trip from Texas to Minnesota. I'm looking forward to hearing what the Mayo docs think, but honestly I'm not hopeful they will be able to tell me anything more than I already know. I'm trying to accumulate as much of my medical records as I can gather so that the doctors at Mayo won't have to reinvent the wheel with my case. I'll keep you posted.

Hello @suzyp,

Welcome, and thank you for joining this discussion, and sharing your story. I can imagine how worried and stressed you must be!

Here are a few conversations on Connect that you may find useful:
– Chronic Pain members - Welcome, please introduce yourself http://mayocl.in/2tz0bcE
– I just need some answers!!! Please help me!!! http://mayocl.in/2uf42sH

You may click on any of the above links, and you will be directed to conversations centered around the complications you listed. In each discussion you will meet many great members talking and sharing similar experiences.

Meanwhile, I'm tagging @clghanimo @jenchaney727 @suesiegel @arriba @copiela @jatl @cheryldotson @cummings3 @aman_23_23, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to offer some more insight.

@suzyp, have you considered getting a second opinion, or perhaps changing physicians?

Hi , all the natural doctors have wanted to do is fill me up with supplements..
what kind of a dr treats CEB ?

Could you help me? I have been sick for 10 weeks with Mono they said it should it's reactivated. Is this a lifelong thing or will I ever be the same? Anytime I do anything physical I get sick with bacteria like congestion. etc.

Thank you ! I'm hoping to find a doctor who will try and sort out my problems.