- The Washington Times - Sunday, May 21, 2000

At first, Jo McCallum thought she had jet lag. After all, her symptoms headaches, arthritislike joint pain and debilitating fatigue appeared after a trip to Minnesota.

But Ms.McCallum, of Oakton, had been working to clear a field on that trip 10 years ago. It was there, she believes, that she was bitten by a tick carrying Lyme disease.

It was the beginning of what Ms. McCallum calls "a depressing roller-coaster ride." Her symptoms would disappear after she took antibiotics, only to reappear when the drugs had run their course. She went to several doctors in search of an accurate diagnosis and an effective treatment.

Ms. McCallum sought holistic treatments, changed her diet and imported drugs from Europe. Eventually, a 27-month course of antibiotics knocked the bacteria out of her system.

She considers herself cured for now.

"Sometimes when you are feeling better, you think you have whipped it, says Ms. McCallum, 51. "Then it comes back. It is very depressing. I can deal with the pain. It is the fatigue that is so overwhelming."

Lyme disease is a relatively recent discovery that is spread by deer ticks, says Dr. Brian Fallon, director of the Lyme Disease Research Program at Columbia University. If a person is bitten by a tick carrying the bacterium spirochete, a number of symptoms can appear, from swollen lymph nodes and rash to problems with sleep, memory and concentration.

About 125,000 cases of Lyme disease have been reported in the United States primarily on the East Coast from Maryland to Maine since 1982. Every state except Montana has reported incidents of the disease, but the major concentration has been found in Connecticut, New York, New Jersey and Pennsylvania.

In 1999, Virginia reported 121 cases of Lyme disease to the Centers for Disease Control and Prevention. Maryland reported 826 cases (a significant jump from 659 in 1998). The District reported six cases in 1999.

However, since it is sometimes difficult to accurately diagnose Lyme disease and many doctors do not report cases to the CDC, there may be many more cases than these numbers reflect, Dr. Fallon says.

"Cases of Lyme have been steady the last five years," he says. "There are about 14,000 to 18,000 reported cases annually. However, the real number could be 10 times greater than that."

Difficult to diagnose

If caught early, Lyme disease usually can be eradicated with a short course of antibiotics. By the time many patients get an accurate diagnosis, however, it is not so early anymore.

A definitive test for the disease doesn't exist. Blood tests can be performed, but often come back false negative, depending on factors such as the length of time since the tick bite and whether the patient has developed antibodies against the disease. Therefore, diagnosis is usually made based on a collection of symptoms, whether the patient remembers getting a tick bite and by the doctor's experience with the disease.

A few days to weeks after the initial infection, a patient could have fatigue, chills, muscle and joint pain and a rash. Those early symptoms can be mistaken for flu or mononucleosis.

About half of the time, the rash appears in a "bull's-eye" pattern radiating from the site of the bite. Other times, a diffuse rash appears. Many patients do not get a rash at all, and by the time they seek help for their flulike symptoms, second-stage symptoms such as paralysis of facial muscles may appear.

Late-stage or chronic Lyme disease occurs weeks, months or even years after the initial infection. A person with late-stage symptoms usually did not get the appropriate antibiotic treatments for the initial infection. Symptoms include arthritis, fatigue and memory problems.

"If you catch Lyme disease early, presumably before the bacteria spreads throughout the body, then antibiotic treatment is going to be more effective," Dr. Fallon says. "Once the disease is in the joints and the central nervous system, then it is harder for the antibiotics to get through."

Dr. Fallon says the standard treatment for early and second-stage disease is a four-week course of intravenous or oral antibiotics such as doxycyline, amoxicillin or cefcin. Occasionally, he will treat a patient with eight weeks of drugs.

If that does not work, Dr. Fallon says the patient may be suffering from the permanent, residual effects of the Lyme infection. The patient also could have a condition with similar symptoms, such as arthritis, fibromyalgia or depression.

The patient could also have another type of bacterial disease similar to Lyme. In addition to spirochete, there are other forms of bacteria that can be transmitted by ticks and cause Lyme-like symptoms. Ehrlichiosis, caused by the ehrlichia bacterium, and Babesiosis, caused by a malaria-like red-blood-cell parasite, are two of the common diseases that can cause debilitating muscle and joint damage if not correctly treated.

Dr. Vijay Sikand, a Connecticut physician who specializes in Lyme disease, says "99 percent of patients" can be treated with antibiotics for 90 days or less.

"Unfortunately, there are doctors who do not understand the science of Lyme disease and patients who are desperate for a cure," Dr. Sikand says.

Frustration over finding a "Lyme-literate" doctor played a big part in Ms. McCallum's experience with Lyme.

"One of the major problems with Lyme patients is they cannot find a doctor willing to take on the challenge of treating Lyme," she says. "The tests are not that accurate, and a lot of doctors do not recognize the symptoms. If they do recognize them, they think they can cure it in a few weeks."

The doctors are aware that Lyme treatment is an inexact science. Dr. Fallon is currently heading a four-year study to determine why some patients have persistent symptoms despite being treated with adequate drugs. Many patients feel like Ms. McCallum did their condition improves while taking the drugs, then they suffer a relapse when the antibiotics are discontinued.

"In the medical literature, the majority of articles say patients continue to improve, but about 20 percent relapse," Dr. Fallon says. "In my experience, it is more like 60 [percent] or 70 percent relapse."

Prevention is key

As suburbia has spread, so has Lyme disease, which was first identified in the 1970s.

"We used to be primarily a farming community, where there were lots of places for deer, mice and raccoons to go," Dr. Fallon says.

But as homes began popping up near the woods and farmlands, the space between people and the ticks that feed off mice, deer and raccoons became smaller.

The CDC recommends removing leaves and clearing bushes and tall grasses which can be nesting spots for ticks from around the house and around gardens. For those who live farther into the countryside, removing plants that attract deer and constructing physical barriers may help discourage deer from coming closer.

The CDC also recommends taking a few personal precautions:

• Wear light-colored clothing so ticks can be spotted more easily. The immature tick is the size of a poppy seed; the adult is the size of a sesame seed. They tend to migrate toward hidden areas, such as the groin, armpit and scalp.

• If hiking or gardening, tuck pant legs into socks or boots and shirttails into pants.

• Spray insect repellent containing DEET on clothes and on exposed skin, or treat clothes with perethrin, a substance marketed to kill head lice that will also kill ticks on contact.

• Wear a hat and a long-sleeved shirt for added protection.

• Walk in the center of trails to avoid overhanging grass and brush.

It is also important to remove clothing, wash it in hot water and perform tick checks after being in the woods. Inspect children and pets carefully, too.

If you do find a tick, carefully remove it with tweezers, says Dr. Sikand. In some areas, ticks can be submitted to the local health department for testing.

"If the tick was there less than 24 hours, it is unlikely to have transmitted Lyme disease," he says. "If it was there more than 24 to 48 hours, [disease transmission] is more likely. Call your doctor to discuss it."

Most important, don't panic, Dr. Sikand says. There is a good chance the tick does not carry the disease. A vast majority of ticks, particularly in lower-risk areas, do not carry Lyme disease bacteria.

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