Epstein-Barr: Myth and Reality
by Sandra Gurvis
Charlene, a 35-year-old married mother of two, wept with relief when she learned she had chronic Epstein-Barr virus (CEBV). “I’d been sick off an on for over two years and no one could tell me what was wrong. One doctor thought I had hepatitis, another sent me for an eye test, still another prescribed tranquilizers and suggested counseling. At last what had been plaguing me had a name.”
Yet her diagnosis, like that of thousands who claim to suffer from CEBV, has generated a tremendous amount of controversy within the medical community. Some doctors believe CEBV is a genuine ailment, while others regard it as a buzz word for hypochondria. Still others consider it a catch-all diagnosis for symptoms that can’t be explained, as had been the case with low blood suger, iron-poor blood, and thyroid disorders in the past.
According to medical definitions, Epstein-Barr is a herpes virus, similar to chicken pox, genital lesions and cold sores. It is closely related to infectious mononucleosis in the United States and Western Europe, Burkitt’s lymphoma (a tumor of the jaw) in Africa, and cancer of the nose and mouth in Asia.
“The Epstein-Barr virus is present in the white blood cells in over 90 percent of the American population,” explains Dr. Ronald Glaser, chairman of the Ohio State University Department of Medical Microbiology and Immunology in Columbus. The virus is believed to be transmitted by saliva. “Usually it remains dormant until the immune system weakens, causing it to proliferate.”
And unlike mono, which strikes during adolesence and college years. CEBV affects adults. “During the first three to six weeks of incubation, patients show few or no symptoms,” states Dr James Jones of the National Jewish Center for Immunology and Respiratory Medicine in Denver. “The illness takes hold, may worsen, then reaches a plateau, waxing and waning at seemingly unpredictable intervals.”
“Victims of the disease, dubbed the “yuppie flu” are primarily women, health professionals and high level executives in their 30’s and 40’s. The symptoms, they say, range from partially to completely disabling, cutting them off from their jobs, recreational activiities and loved ones.
“The disease took over my life,” Charlene asserts, “I ran a counseling profram for 13 years and had to quit. Whenever I have bad spells, I’m forced to hire a babysitter to help care for my kids. I love my career and my family, but I’m too sick to handled them full time.”.
Also nicknamed the “Raggedy Ann Syndrome” because sufferers feel as if they’ve had the stuffing knocked out of them, CEBV first received national attention in 1985 after an outbreak of a mysterious illness in Incline Village, near Lake Tahoe.
According to an account in Hippocrates magazine, two local doctors, Paul Cheney and Dan Peterson, began seeing an uncommonly large numbers of patients with persistent flu-like symptoms.
The patients tested negatively for mono, so Cheney and Peterson did some research, coming upon articles on CEBV in a medical journal. They then ordered a recently developed diagnostic test from a commercial laboratory. The results showed high levels of antibodies to the virus in sufferers. Thus, a syndrome was born — or perhaps reborn.
Because of the outbreak appeared to be centered in the Lake Tahoe area, the Centers for Disease Control (CDC) sent two researchers to investigate. Their highly publicized report in May 1986 questioned not only the validity of the lab test but pointed out that healthy people also had high antibody counts.
The findings led many physicians to assume that CEBV was a fraud, even though more cases kept surfacing. “There’s a large element of “me, too” in this,” says Ohio State’s Glaser. “Once news of a disease hits the media, people start thinking they have it if they’re tired or depressed.”
However, “not everyone who is sick is imagining this,” he insists, “Many are truly ill. They have clinical symptoms to prove it. And well-adjusted people who lead vigorous, active lives doent’ suddenly become too ill to lift their heads. Something is out there. We just don’t know exactly what.”
The CDC is currently compiling a standard clinical diagnosis for Chronic Fatigue Syndrome for use by all doctors.
“We’ve had similar outbreaks since the 1930’s” explains Carlos Lopez, chief of the Herpes-Virus Division there.
“The Scientific literature has described something like it for the past 50 years.” It has also been known as Royal Free disease, epidemic neuromyasthenia and myalgic encephalitis.
Lopez hopes the definition will serve as a unifying force in identifying the syndrome. “Our investigators were looking at one specific virus, Epstein-Barr (in Incline Village). What we’re dealing with is a series of symptoms, possibly resulting from a number of viruses.”
Other causes might be infectious agents, or the body’s inability to respond to infection, toxic materials, stress or other psychological reactions, or a combination of these factors.
And research is beginning to uncover a few things. Dr. Robert Gallo of the National Instititutes of Health, who also identified the AIDS virus, recently discovered a new herpes virus, (HBLV) which may be involved in Chronic Fatigue. Researchers are currently trying to isolate HBLV in patients who already have the syndrome.
Preliminary results of a study by David Portilo of the University of Nebraska Medical Center link Chronic Fatigue with viruses known to cause sore throats (adenoviruses). And Ohio State’s Glaser is studying diagnostic “markers” associated with the Epstein-Barr virus and nasopharyngeal (nasal) carcinoma. He hopes to find an antibody that will serve as a common denominator in diagnosing some cases of the syndrome.