Lyme sufferers tell of going undiagnosed for years while the disease debilitated them.

Because of its seemingly limited occurrence in South Carolina -- only about 79 cases have been reported to the state Health Department since 1990 -- local doctors are not actively looking for Lyme, patients say. But the caseload in every state is vastly underreported, according to the Centers for Disease Control and Prevention.

"It's hard to watch someone die from the disease who could have been treated," said 62-year-old Carol Black of Columbia, whose father succumbed to the disease in 1996.

Black and her father both discovered ticks on their bodies while doing yard work in the 1980s at Lake Murray. Her father died of central nervous system complications from Lyme.

"They said we don't have Lyme disease here," said Black, who stillexperiences mild joint, vision, memory and fatigue problems. She was originally assured that her ailments were signs of aging.

The prevalence of Lyme in South Carolina is minimal compared to Northeastern states like Connecticut and Rhode Island, the worst-hit areas in the nation. less than 3 percent of ticks in the state carry the bacteria that causes Lyme.

Yet epidemiologists stress there are as many as 12 undiagnosed cases for every one case of Lyme reported. That means the disease may have stricken as many as 900 Palmetto State residents in the past decade.

The message to memorize is that you're not safe simply because you live in the South. You can be bitten by an infected tick on the coast, in the mountains, and even in your back yard. And Lyme is not the only potential hazard: ticks in this region can also transmit Rocky Mountain spotted fever and Ehrlichiosis.

Lisa Reiber of Lexington said she caught Lyme when smashing ticks on her mother-in-law's Gaston porch back in 1988. She didn't know to be more cautious.

"I actually killed the ticks with my hand," said Reiber, who is only 32 but is nearly incapacitated by exhaustion.

The best defense against getting Lyme is often a good offense. (See sidebar). Ticks are tiny -- barely the size of a poppy seed -- and sneak on and off the body with barely a trace.

The disease is caused by a spiral-shaped bacteria that is transmitted by the most common breed of tick (Ixodes scapularis) in South Carolina. The black-legged tick has been found in 25 counties, including Richland and Charleston, but not in Lexington.

The tick picks up a strain of bacteria (Borrelia burgdorferi) while biting infected deer, birds, rodents, reptiles and other wild animals. It then passes the bacteria to humans and animals while feeding on their blood for several days." It roams around the body looking for a favorite spot: under the armpits, behind the ears, the nape of the neck," said Dr. Stanley Schuman, an epidemiologist atMedical University of South Carolina in Charleston.

Flu-like symptoms occur first. When left untreated, those symptoms can worsen into long-term physical, neurological and psychological damage.Because Lyme specialists are uncommon in South Carolina,when local doctors do successfully diagnose the disease, some do not know how to treat it. The treatment regimen usually involves using oral or intravenous antibiotics, but is not a cure-all. Reinfection is possible.

Testing for Lyme. Some of the medical tests used to detect Lyme are not definitive. That adds to the confusion, as does the fact that local doctors don't perform these tests often.

"One of the doctors said he could do a Lyme disease test, but he'd have to look in the book to make sure he knew how," Reiber said.

Diagnosis of Lyme can be so elusive that patients go without treatment for months and even years. Up to 40 percent of the Lyme patients never develop a bulls-eye-shaped rash, a telltale symptom. Misdiagnoses result, and patients suffer longer than necessary.

Adding to the difficulty is that many patients have Lyme even if they have negative blood test results.

Though Reiber developed the bulls-eye rash, she did not realize its significance. Neither did the 15 doctors she visited statewide before a New Jersey specialist diagnosed her with Lyme in 1989.

Up until then, she had been told that she suffered from gonorrhea, osteomyelitis, and psychological problems.

By the time she sought help in New Jersey, Reiber could no longer walk and had lost all of her upper teeth. Her hips and legs were completely numb.

"Before Lyme, I could play basketball, I could run, I could do anything I wanted to," she said. "Now my knees shake when I walk up the stairs."

Following years of antibiotics and painkillers, Reiber went into remission in 1995 long enough to conceive a son, Reese. But her condition has degenerated since then. Memory loss, weak limbs and concentration problems make it impossible for her to function.

Because of concentration and memory problems, Reiber was fired from her job with a forklift company in May after 13 years of employment. Fortunately, her husband and 12-year-old daughter pitch in to care for Reese, who is 4.

"Everything hurts so bad I can hardly walk anymore," said Reiber, who plans to begin another cycle of intravenous antiobiotics soon. That will cost about $2,000 a week.

"I've gone from being super-human to being nothing," she said.

Sue Fox, a glass artist, understands what Reiber is going through. Back in 1992, Fox enjoyed taking frequent walks through Congaree Swamp and jogging through her Columbia neighborhood. She recalls that while out walking one day, she felt a bite on the back of her right leg. Later, she noticed a rash, but didn't think much of it.

Before long, Fox was burdened with fatigue, memory loss and headaches.

"By the end of the summer, I was sleeping nearly 22 hours a day," said Fox, president of the South Carolina Lyme Disease Support Group.She wasn't diagnosed until a year had passed. Doctors said she had both chronic fatigue syndrome and fibromyalgia.

"I developed a severe depression," Fox said. "Today, I can go a couple of hours and have to rest. Most afternoons, I stay in bed."

Eluding detection. The Southeast appears to be home to a unique strain of Lyme that is not detectable by most standard diagnostic tests, according to Georgia researchers. That exacerbates the existing diagnosis problem.

Writing in the November issue of Archives of Dermatology, Dr. Michael Felz of the Medical College of Georgia said the bacteria in Southern Lyme cases had a different protein composition from that in New England and the Midwest. Extensive tests of 23 adults from South Carolina and Georgia who developed the Lyme rash found that 70 percent were infected with an atypical Lyme-causing bacteria.

The different bacterial strains probably have unique DNA backbones and cause different clinical symptoms, Felz and his colleagues found.

"It may be that those strains are harder to detect on some of the routine lab tests that we use up North," said Dr. Brian Fallon, a psychiatrist with Columbia University in New York. Fallon was recently awarded $4.7 million from the National Institutes of Health to study chronic Lyme disease.

"Many people don't believe Lyme disease exists in your state," he said.

Lyme goes unreported. Schuman surveyed 940 South Carolina physicians in 1991, asking how frequently they treated Lyme. The response was an eye-opener: Physicians reported treating 334 Lyme cases in 1990, but only 10 Lyme cases were actually reported to the CDC that year.

Schuman conducted the survey after treating three Lyme patients in one year -- two of them were youngsters who had never left the state.

"That began to raise doubts that Lyme was being recognized or reported," he said.

Dr. John Iskander, medical epidemiologist with the state Department of Health and Environmental Control, said surveys are not reliable "unless you then go back to those cases and see if they were actually cases."

The reported caseload is much more representative of reality, he said, since they have met the stringent CDC guidelines of "reportable" Lyme. The CDC requires that Lyme patients have a Lyme-positive blood test, combined with either the classic bulls-eye rash or some other well-documented symptoms.

South Carolina doctors who took part in the survey said they were only reporting patients whose Lyme disease was confirmed by blood tests. However, they were treating many others who showed clinical symptoms of Lyme.

That is apparently true of many doctors across the country. There were 14,621 cases of Lyme disease nationwide in 1999 reported to the CDC and 121,000 since 1990. The CDC says the caseload is "greatly underreported."

Lyme vaccine controversial. A vaccine has been developed to protect people from Lyme-bearing ticks but it is not without issues. Several patients have blamed the Lymerix vaccine for causing severe arthritis, something manufacturer SmithKline Beecham denies.

In addition, it requires three shots: the inital vaccine, and two follow-ups. Even then, it is only 80 percent effective.

The vaccine is being recommended only for residents of moderate- to high-risk areas, whichexcludes South Carolinians.Schuman urges against getting the vaccine unless you are a laboratory worker handling specimens of the disease.

In the grand scheme of health issues that should worry state residents, Lyme disease ranks low on the list, he said.

Tell that to Lisa Reiber.

"It's totally changed my life," Reiber said. "I'm tired of being in pain."

Reach Kathryn Winiarski at (803) 771-8454 or kwiniarski@thestate.com.

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