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Report From The War Zone: Lyme Disease

The Medical Community Continues To Struggle With Diagnosis And Treatment

Early this spring, my 11-year-old niece, Shannon, started complaining that her joints hurt, and a few times her temperature went up. Then her knee swelled.

My sister, Shannon’s mother, took her to a doctor near their home in New Jersey. “Not once did she mention Lyme disease or suggest testing for it,” my sister said. “The swelling did go down in the subsequent days following that visit, so I thought all was fine and didn’t follow up.”

Then on a class trip to Philadelphia in May, Shannon’s knee swelled more dramatically, and her father (who was along) piggy-backed her around at the end of the day. My sister insisted she go back to the doctor, who tested her for Lyme Disease. The test came back with a strong positive.

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Shannon began taking antibiotics and spent a week on the couch. Her pain went away slowly and the swelling finally subsided.

Because I have often taken Shannon and her brother on woodsy outings here, in the region where Lyme Disease was first discovered in 1977, this story troubles me. Lyme Disease prevails throughout the Northeast now, but this is the hot spot. Of course, I always check for ticks and bring along repellent.

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Those of us who live in central and southeastern Connecticut are accustomed to doctors who tend to suspect Lyme disease right away.

Shannon joins the more than 38,000 cases of Lyme Disease reported annually in the United States. In Connecticut, 78 people out of every 100,000 now get Lyme Disease. In New England, more than 9,000 cases are reported each year.

Test Remains Unreliable Until Later Stages

Four experts who spoke in May at a Public Health Grand Round symposium at the Centers for Disease Control and Prevention explained why a case like Shannon’s was classic. The panel illustrated the current problems with diagnosing Lyme.

First, Shannon’s symptoms matched all those of someone who has had Lyme for a while, perhaps even several months. Second, her test was a strong-positive: the Lyme Disease test for antibodies to the bacterium is most reliable after infection has taken hold. No test that can reliably detect Lyme right after the tick bite has been developed.

The experts’ talks underscored that if a patient like Shannon had gone to the doctor months before she began to suffer, the doctor might not have been able to cure her then. They agreed, amazingly, that the best strategy against Lyme Disease these days is basically the old home remedy: to avoid tick bites. But even with the use of repellents and checking for ticks, sometimes infection happens. Oddly, the effective vaccine for Lyme Disease was taken off the market because of poor sales. I don’t know why that would be. I for one would line up for it.

So, How To Diagnose?           

Meanwhile, medical science remains stymied at how to diagnose Lyme Disease before the point where patients like Shannon are already in pain.

Dr. Adriana Marquez, an infectious disease expert at the National Institutes of Health, said at the symposium (which is online here) that doctors often order the Lyme Disease test when it isn’t going to help. She said that doctors conduct 3.4 million Lyme Disease tests each year (remember that only 38,000 test positive).

It’s easy to understand, though, why people who found a tick attached to their skin, or the classic bull’s-eye rash that accompanies many (not all) Lyme Disease cases, would want to get treated quickly. But Dr. Marquez confirmed that only after patients start suffering as Shannon was can the test work very well.

It was children just like Shannon in Lyme and surrounding towns whose swollen knees and pain led, in the mid-1970s, to the discovery of the spirochete that causes Lyme Disease. “On some roads as many as one in 10 children had arthritis,” said Dr. Allen Steere, director of clinical research in the rheymatology unit at Massachusetts General Hospital. Steere was one of the first epidemiologists to study the sick children back then.

 “Most patients had disease onset in the summer or early fall,” he said. One-quarter of the children had seen a lesion on their skin (where the tiny black-legged tick known as the deer tick had bitten them). The first symptoms are fevera and chills. Stage two brings meningitis, cranial neuropathy, motor or sensory radiculoneuropathy

cardiac involvement. Months later, 60 percent of sufferers develop arthritis. “The most frequent pattern is intermittent attacks in one or a few joints, especially in the knee,” Dr. Steere said.

Antiobiotics Remain Controversial

Steere said that many patients recover eventually even without the course of antibiotics usually used on Lyme patients. But recovery without treatment can take some time, and the question of full recovery remains very controversial, he said. He said that so far no medical evidence supports what many groups believe, which is that chronic Lyme Disease is real. All of the experts stressed that medical science still is studying how to diagnose and treate syndromes that may follow standard courses or antibiotic therapy.

“Even without antibiotics the immune system seems to win out eventually usually within several years and symptoms resolve,” Dr. Steere said. “There are strong feelings on the part of advocacy groups that these persistent syndromes result from persistent infection and require months or years of antiobiotics.” But, he added, “these pain and fatigue syndromes are not specific for Lyme disease. They may follow stressful events including physical or mental trauma. … The majority of patients now diagnosed with “crhonic Lyme disease” have pain and fatigue symptoms but lack evidence of past or present” infection with Lyme Disease.

For more information:

Centers for Disease Control: http://www.cdc.gov/lyme/toolkit/index.html

The National Institute of Allergy and Infectious Diseases posts this history of Lyme Disease: http://www.niaid.nih.gov/topics/lymeDisease/research/Pages/cause.aspx

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