ALPHARETTA, Ga. -- Over the past thirty years, Kelly Deushane has seen countless doctors for a string of seemingly disconnected illnesses.
Deushane was the one who got sick on every family vacation, the one who suffered through years of sinus problems that required surgery, only to wind up with a serious infection of her sinus bone. Among her many illnesses were digestive and bladder issues, a false diagnosis of Scleroderma, and a diagnosis of Celiac disease. She caught the mild head colds her two daughters brought home from school, but for Deushane they were intense and prolonged.
"Anything anyone ever brought home I would always get it harder and longer," she said. "You start feeling like a hypochondriac because you have all these weird things happening that you can't really point to and no one can see."
No place was safe. One day she pricked her finger on one of her rose bushes and got something called Rose Gardener's Disease. It "required two surgeries and months of therapy and my finger still only goes like this," she says, holding up her hand to display a finger that will no longer straighten.
After thirty years of illness, it was just this year Deushane said she read about mono and how for some people it can come back, wrecking their health.
"Never in a hundred years did I ever think all of this was connected back to mono," she said.
Deushane had gotten mono when she was a 19 year old college student. She was sick for weeks and had to leave school and go home to get better.
“I just remember being so insanely tired. I also had strep throat with it,” she said.
She thought she recovered from it.
But earlier this year she read about Epstein-Barr, the mono virus, and how it can come back and affect health in a myriad of ways. She asked her functional medicine doctor to do the blood test for mono and was stunned by the results.
"The typical levels of a dormant Epstein-Barr Virus is 0 to 20, and here I was over 600," she said. "So, clearly this virus had been thriving and surviving for over 30 years in my body."
Deushane and her doctor consulted with Doctor Henry H. Balfour Jr. at the University of Minnesota. Balfour is one of the foremost world experts on mono and is leading a team that has developed a mono vaccine that could be used in human trials as early as next year.
"Epstein-Barr Virus, the cause of mono, was discovered in 1964 and yet here we are many decades later without a vaccine, and I think the reason for that is that people do not appreciate first of all how significant mono can be," she said.
Balfour says 280,000 college freshman contract mono every year. The average amount of missed school is three weeks, according to Balfour. He said while some may see mono as an unwanted, but unavoidable passage to adulthood, he see it not just a single inconvenience, but as the possibility of long term, life changing illness.
"Epstein-Barr Virus is responsible for a number of chronic conditions, especially certain forms of cancer and autoimmune disease and even multiple sclerosis," Balfour said. "Everybody with MS essentially has been infected with EBV. Ninety to 95% of the world's population is infected with this virus."
For people like Deushane, it's too late for a preventative vaccine, but at the advice of Balfour, she began a course of antiviral medication. She said the results were life changing.
"I'm not so tired and the biggest non substantiated thing I can say is I have kept a pace since this spring that I haven't kept in 10 to 15 years and I have not gotten sick," she said. "It's revolutionary. I usually catch every virus in a 20 mile radius."
Balfour says some of the symptoms people with recurrent mono could experience are ringing in the ears, joint pain, fatigue, and flu-like symptoms they don't recover from.
He also says mono could play a role in certain misunderstood illnesses. "It's pretty clear that the virus EBV, the cause of mono, is not the only cause of chronic fatigue or fibromyalgia, but it certainly could be one of the causes," he said.
The problem with diagnosing recurrent mono is that most doctors don't know about it. Deushane has been hesitant to recommend that friends get tested, because of her own exhausting medical experience.
"You go on the internet to find anything about it, there's nothing, absolutely nothing," she said. "In fact I've told my internist and two others that I have chronic Epstein-Barr and they do the nodding smile and glaze over. They have no idea what I'm talking about."
For Deushane the antivirals have been life changing, but they don’t work for everyone, and there is no official treatment.
Balfour continues the final push on the vaccine, with the hope that another vaccine can be created to treat those already infected with EBV.
"I think that this virus and its potential complications has flown under the radar for a long time," he said.
Deushane never quit fighting, even when her body tried to make it so that she could no longer fight.
"This is all just part of a puzzle that needed to be put together and unfortunately the way most doctors and medical professionals work is that it's never a whole picture -- one doctor for every part and unless you're your own detective you're never going to figure out why this seemingly odd and unconnected stuff happens in one person." she said.
Note: Kelly Deushane is the wife of WXIA-TV General Manager John Deushane.