North Lake Tahoe Bonanza – December 20, 1985


Basic Symptoms May Be Sign of Epstein-Barr Virus

SUMMARY: Headaches, Muscle spasms, Swollen glands, Slight fever, Dizziness. The symptoms of one of the least diagnosed but still widespread illnesses begin here and add up to chronic Epstein-Barr virus.

Most people are exposed when they are children to this herpesvirus that hides in the white blood cells. The symptoms are similar to those of mononucleosis, but the diagnosis is psychologically important to its sufferers.

Though research is being done and doctors are hopeful of a cure, the victims turn for now to self-medication.

Fifteen years ago, W.H. thought she was coming down with something going around. Her throat was sore, her arms felt bruised and she was tired. Really, really tired.

But then, she had been working 12-hour days as a social worker, and she knew she was run-down.

After about a month of a growing list of symptoms – headaches, muscle spasms, swollen glands, slight fever, dizziness – she went to her first doctor. He told her it was just the flu, and she should take it easy.

She went back to see him, a month later, still complaining.

“But they (the symptoms) were worse, you know, I was unable to get out of bed because my muscles were so weak.” she says. And she had some numbness around her face and in her fingers.

This time the doctor said it was probably stress. She asked him to run tests. He ran tests, and he said she was as healthy as an ox.

And she went to another doctor. And another doctor, and another.

She couldn’t concentrate well, and she was so tired.

“I was getting real depressed.” she says.

Generally she felt like leftover pizza. She quit her job and stayed in bed.

“There wasn’t one doctor that whole time who did anything more than pat me on the head, inferring it was psychosomatic.”

Finally, two years ago, W.H. was diagnosed as having chronic Epstein-Barr virus.

There are stories of sufferers who have been placed in mental institutions or who have tried suicide.

One young woman was diagnosed by psychiatrists as “a manipulative child” after she told her parents she was too tired to leave her bed.

On the psychiatristʼs advice, the girl was forced to go to school. She was found in the street, asleep in the pouring rain.

Even if Epstein-Barr virus is diagnosed, there is no cure, and currently no medically accepted treatment. Ninety percent of those who get it have it for life.

Epstein-Barr is a herpesvirus that hides in the white blood cells of the body, suppressing the immune system when activated.

Although there is “no evidence that this disease leads to a more serious illness.” says Dr. James Brodsky of Chevy Chase, Md. it is associated with Burkitt’s lymphoma, nasopharyngeal carcinoma, lupus and rheumatological arthritis.

To date, most doctors are not knowledgeable enough to look for it, and most laboratories are not sophisticated enough to detect it.

Because the disease is seldom diagnosed, it is considered extremely rare, although some researchers believe there may be as many Epstein-Barr sufferers as there are people with multiple sclerosis.

“The patter we connect with this virus is that of mono.” says Dr. James Jones of the National Jewish Center for Immunology and Respiratory Disease in Denver.

The disease’s symptoms have been misdiagnosed as infectious mononucleosis, except that mono is considered a short-term, nonrecurring illness.

When fatigue, swollen glands and muscle aches persist in the Epstein-Barr virus patients, the physicians treating these persons for mono either are dumbfounded by the symptomsʼ longevity or consider the disease psychosomatic.

As early as 1948, Dr. Raphael Issacs of New York wrote that 25 of his patients had symptoms for infectious mononucleosis for more than a year. Not until 20 years later was the virus re-examined by Drs Werner and Gertrude Henle of Philadelphia.

The mono connection was not gratuitous. Many of the people with the virus have had mono. The antibody test that finally was developed, thanks to the Henles, measures the active Epstein-Barr virus in the blood.

Most people are infected with the virus – which mimics a case of the flu or a cold – as children and recover from it.

The virus then lies in the body, held in check by the immune system. Most standard blood samples will contain a measure of the virus.

But for those whose immune system for unknown reasons has proved to be less than efficient in checking the virus, these antibody levels increase. But the antibody test is not foolproof for identifying all persons with the disease.

“I’m pretty sure we don’t have a good test for all people,” says Dr. Irena Brus of Beth Israel Hospital in New York.

For some, the disease comes and goes. For other, like W.H., it remains constant.

There is some evidence that it gets less severe with time. Many of the symptoms may disappear.

“I’m much better than I was,” says W.H. “but, my God, I wouldn’t wish what I went through on anybody.”

The fatigue “a pronounced, an unusual and nauseating fatigue,” says Brus.

In some persons, lasts a lifetime.

Epstein-Barr disease has been called the “yuppie flu” because it tends to afflict urban professionals older than 30, especially women.

It is thought that this demographic profile exists because of the rash of infectious mononucleosis that has occurred in the past 20 years.

In reality, “It’s an extraordinary, ubiquitous disease,” says Jones, one of the principal researchers into its treatment and possible cure.

Some victims get mono and just never get better. When these people go back to their doctors, their blood tests for mononucleosis are negative. But nothing else in their disease has changed.

For those who have had mono years before an then get Epstein- Barr virus, the symptoms are similar.

“Looking back on it now, ” says W.H. whose spleen had been removed before the virus was diagnosed, “I practically gave the doctor the answer. I told him, ʻThe only time I ever felt this bad was when I had mononucleosis in 1968.ʼ”

The diagnosis is psychologically important to the sufferers, especially those who have been undiagnosed for years.

“Every doctor I went to in the last 10 years just rolled their eyes,” says C.J., whose symptoms of sore throat, swollen glands and fatigue were cyclic, coming every fall. The disease varies greatly from individual to individual. When E.A. became sick with hepatitis five years ago, it seemed to trigger the disease. “But I’ve gone through every possible symptom of it you can. I’ve had it all.” For five months of it, she says, “I couldn’t talk, couldn’t breathe, couldn’t walk.”

Several sufferers had to quit their jobs, find part-time work or go on welfare. W.H went back to work part-time two years ago, when she began feeling better.

“But I brought on my own relapse by doing too much,” she says.

Jones says he believes “the depression is a primary part of the illness.”

Considering the chronic nature of the disease, the difficulty in ever getting diagnosed and its debilitation, that depression is a symptom is not surprising.

“It isn’t my own depression,” says C.J. “You know how you can tell about your own body after you reach a certain age? I’ll tell you what’s depressing, though: feeling like I’m older than my grandmother. And she’s dead.”

Like infectious mononucleosis, the “kissing disease,” the Epstein-Barr virus is carried in the saliva. But it’s considered only moderately infectious.

Theories on what triggers it range from genetic susceptibility to immunological abnormality.

One of the more interesting theories implicating tung oil, a furniture sealant. Tung oil, a rat poison in the Orient, is an active ingredient in paints, waxes, polyurethane, putty and caulk. In laboratory experiments, tung oil, a known carcinogen, has reactivated the latent virus.

D.E, who has had the virus chronically for two years, says, “I restored an old house, and somewhere in there I got mono and then this. I like the tung oil idea. I like it a lot better than thinking I’m genetically faulty.”

Sherwyn Williams has agreed to look into the removal of tung oil from its products.

Research to locate an effective treatment for the disease is being done at several institutions.

At the National Institutes of Health in Bethesda Md, Dr. Stephen Straus is conducting a double-blind study using acyclovir, a drug proved effective against herpes simplex.

Subjects in the study are given either the drug or a placebo and then monitored for improvement.

Another double-blind study using intrasmuscular doses of gamma globulin was done by Dr. Richard DuBois of Atlanta, who says the blood protein indicated the therapy was more effective than placebo.

By next spring, results on acyclovir and intravenous gamma globulin should be available.

With no remedy in sight, many of the virus sufferers become self-medicators.

W.H. calls herself “the home-remedy quack person,” having read nearly everything in the years that she’s had the disease.

In the beginning, she says, bee pollen gave her some energy back. She tried megadoses of Vitamin C intravenously. Then she took the adrenal glands of baby pigs a couple of times a week.

“That didn’t help me, but it helped some people.”

There’s also something called the transfer factor, which is a blood product made of centrifuge-spun blood. W.H. has had the mercury removed from her teeth and replaced with gold on the chance that mercury poisoning has something to do with chronic Epstein-Barr virus.

There is optimism in the medical community about someday finding a vaccine for Epstein-Barr.

“One of the crucial problems of finding a cure,” says Brus, “is, Why do some people have chronic Epstein-Barr virus? What makes the latency? Is it a change in the immune system? Is this virus an innocent virus? Until these questions are answered, we cannot find a cure unless by serendipity.”

Copyright 1985, North Lake Tahoe Bonanza