Sunday, June 26, 2005

Herpes - the scourge of sexually active youth during the 1980s - has gone underground.

Buried under talk of HIV and AIDS, the virus that once made headlines is barely known by today's young people. But it ought to be.

Genital herpes remains an epidemic, just as prevalent now as it was a generation ago. And just as incurable.

"It's still causing problems for millions of people and still a leading STD [sexually transmitted disease]," said Charlie Ebel, co-author of a preeminent handbook on genital herpes and board chairman of the International Herpes Alliance. "Somewhere between one out of four and one out of five adults has some form of genital herpes. That's a pretty astoundingly high rate of disease."

The virus can be spread through oral or genital contact, invading the body through a crack in the skin or through mucus membranes. What can follow are searingly painful ulcers, sometimes accompanied by fever, aches and swollen lymph nodes. The initial episode can last for more than 20 days. After that, most people get about four outbreaks per year, often triggered by stress, though a minority suffer more frequent recurrences.

If it sounds a lot like cold sores, there's good reason: One strain of herpes typically causes mouth lesions, the other, genital lesions, though oral sex often leaves sores in either spot from either virus.

Exactly how many people have the disease is unknown because unlike syphilis, gonorrhea and chlamydia, states don't collect data on herpes.

Even if it were, precise figures would be elusive because studies have shown that up to 80 percent of people who test positive for herpes antibodies may have symptoms so mild that they fail to recognize them, or may have no symptoms at all.

Which is not to say their diagnosis isn't a public health concern, too.

For starters, active lesions, even tiny ones, are a risk factor for acquiring or spreading HIV.

What's more, herpes can be passed on unknowingly even when symptoms aren't present.

It's the perfect kindling for fueling an epidemic, which is precisely what herpes has been.

Tales of pain, hardship

Reports from a variety of clinical settings in the United States suggest that the incidence and prevalence of genital herpes increased 11-fold from the 1970s to the 1980s. In 1982, Time magazine ran a cover story calling it "The Scarlet H," predicting that the insidious virus "threatens to undo the sexual revolution."

By the early 1990s, an estimated 45 million Americans were infected with herpes simplex virus type 2, the most common cause of genital herpes.

Most experts believe the level has held relatively steady ever since then.

But beyond the numbers are tales of pain and hardship.

Betsy O'Rourke, a 38-year-old Pennsylvania mother of two, was 19 and in nursing school when she slept with a medical student who later confessed he had a venereal disease. She soon developed multiple blisters that became so painful it hurt even to walk or urinate. Mortified at the prospect of rejection, she kept her condition a secret from subsequent boyfriends and then was weighed down by silent guilt when each in turn was diagnosed with the disease.

"I thought herpes happened to other people, not good girls like me," said O'Rourke. "I was absolutely miserable. I was scared to death. I didn't know if I'd be able to have a normal life or if anyone would ever want me, and I was in a lot of pain. As it turned out, I went on to live a good life, but at the time, I didn't know if I would."

Online groups growing

To counter the fear and isolation that sometimes follows diagnosis, many turn to the Internet: medical sites, support groups (Yahoo's is called Picking up the Pieces) and herpes dating services (such as Meet People With Herpes or ). There are pages with blister-filled photos and pages with intimate advice ("Tell them before you have sex with them, but wait until you're sure you like them enough to want to have sex with them," starts one.)

The oldest and biggest site, the Original Herpes Homepage (at ), gets more than 1 million hits a month, many from people looking to overcome the sense that they're damaged goods.

"He said he thought he could deal with me having H, but then couldn't," wrote one woman who had been recently diagnosed. "So now I'm back to feeling worthless and disgusting and lonely."

Another lamented: "I feel like I have a handicap in the dating game ... like I'm stuck with a 'slightly imperfect' sticker, and the intelligent, funny, beautiful men that I'm attracted to are shopping for perfect."

One man wrote last week: "A couple of months ago, before I found out about my own situation, I know how I would have reacted had a girl I was seeing told me she had this virus ... I would have held her hand and told her that it didn't matter, and a few weeks later would have used the back door."

Treatment pros, cons

Management of the disease these days is better than it once was.

In the past several years, antiviral drugs have became available, reducing the number of outbreaks and shortening their duration. The downside is that to hasten healing, some drugs need to be taken five times a day.

To suppress the virus long-term, cutting the number of outbreaks by 75 percent, people typically remain on the drugs indefinitely.

But the cost for people without health insurance can be prohibitive: one of the most effective herpes drugs costs $150 for a one-month supply.

The drugs may ease physical symptoms, but they do not assuage the emotional sting.

Consider the case of Rajah, an electrical engineer who was diagnosed 10 years ago at age 49, after 25 years of what he had thought was a monogamous marriage. It turned out his wife - the first and only woman he'd ever had sex with - had been unfaithful, and had brought the virus home.

The couple soon divorced.

"So there I was, a 50-year-old guy back in the dating pool - with a concrete block tied to my leg," he said.

"I'm sort of a full-disclosure kind of guy and I figured at my age, I had to be up front and not waste anybody's time, but I worried about how I'd tell them.

"In many ways, though, I'm happier now than I was before I had herpes.

"I've become a more open person, less quick to judge people based on superficial labels. And most of all, if it weren't for herpes, I would never have met the woman who is my wife today."



# Herpes is as much of an epidemic today as it was a generation ago; an estimated 45 million Americans are believed to be infected.

# Classic herpes symptoms include painful ulcers in the genital area, though many people have symptoms so mild they don't realize they're infected.

# The herpes virus can be transmitted even when no symptoms are present.

# Any person who is sexually active can contract genital herpes. Herpes is transmitted through direct skin-to-skin contact, primarily by way of the mouth or genitals.

# There is no cure for herpes, which stays in the body for life. Antiviral therapy, however, can reduce the number of outbreaks and shorten their duration.

# Experts recommend abstaining from sexual contact when symptoms are present. Because herpes can also be transmitted when carriers are asymptomatic, experts urge using condoms between outbreaks to reduce the risk of spreading the disease.

For more information:

# The National Herpes Hotline at (919) 361-8488, 9 a.m. to 7 p.m., Monday through Friday.

# American Social Health Association and National Herpes Resource Center (  )

# Original Herpes Homepage ( )

# "Managing Herpes," by Charles Ebel and Anna Wald, M.D., M.P.H., published by American Social Health Association, 2002.