ABC News, 5/4/02, c. 2002

Baffling Lyme Disease 
 	Numbers Are Rising But Some Aren’t Getting Treatment

Commentary
By Nicholas Regush

May 4 — The sun may be shining and leaves are returning to the trees, but watch out for those blood-sucking ticks that are spreading the now increasingly common and puzzling Lyme disease. 
     And this Lyme disease season may be worse than last because winter was fairly warm and ticks will be around in substantial numbers. 

Bacterial Nuisance
The disorder is baffling doctors and patients alike because individuals are suffering from symptoms but not necessarily being diagnosed. Further, some people continue to be sick after they are treated. 
     On center stage in the mystery is a corkscrew-shaped bacterium, a spirochete called Borrelia burgdorferi. This bug, which molecular evidence suggests has been hanging around since Paleolithic times, lives and thrives in wild animals, notably deer. The microbe is spread from one animal to another by way of the blood-sucking Ixodes tick.
     The bacteria-carrying tick also bites humans. Back in 1975 in Lyme, Conn., arthritis-like symptoms in children were first associated with ticks and Borrelia burgdorferi. Though the disease has since spread across the country, it has affected people mainly in Connecticut, Delaware, Maryland, New Jersey, New York, Pennsylvania, Rhode Island, Minnesota and Wisconsin. 

Cases Rising, Tests Iffy
By the end of 1998, the latest period for which data was available, 16,802 cases of Lyme disease were reported to the Centers for Disease Control and Prevention in Atlanta. In 1992, there were 9,909 cases. The jump is likely due to better reporting as well as more cases. Still, experts at the CDC suggest that these numbers probably represent the tip of the ice cooler.
     And herein lies part of the mystery. How do we know if someone has contracted Lyme disease? Well, first, in many people there’s a bulls-eye-type rash. There’s also often a varying buffet of cold symptoms, fatigue and joint pain and inflammation.
     The usual “patient management” rules in the medical texts say that if you spot the rash and the clinical history suggests a tick bite, then treat with antibiotics. This is generally good advice and often that is the end of a potential Lyme crisis.
     But many people do not get a rash, some 15 percent or higher, or even see one. The various blood tests available, including more than 50 commercial kits, are not very convincing diagnostic tools: Even the Food and Drug Administration, which approved the kits, warns doctors that a positive test for antibodies to the spirochete does not necessarily mean there is an ongoing infection or that a negative test means no Lyme disease. 
     Given that 3 million tests are done annually, some manufacturers are making money for an iffy test, which can lead to misdiagnosis or unnecessary treatment. 
     Other blood tests, which attempt to pick up signs of the immune system interacting with the spirochete, offer some hope for better diagnosis, but the research data are still too preliminary. 

Chronic Cases
One of the major problems of diagnosing someone with Lyme disease is that the symptoms are often either subtle at first or they are similar to other conditions, including chronic fatigue syndrome, which usually includes fatigue and joint pain. 
     Some people can not fight off the infection, apparently. Some patients who first appear to be successfully treated with antibiotics develop a wide range of new and troubling chronic symptoms, such as severe fatigue, irregular heartbeats and additional arthritis symptoms. In these chronic patients, there is no sign of the spirochete and some of these patients are written off as whiners. 
     So what might be happening here? One preliminary idea is that the spirochete remains hidden and avoids detection by conventional means, according to Dr. Steven Phillips, an internist in Greenwich, Conn. Research on the genetic structure of bacteria conducted by Joseph Penninger of Amgen Institute of Toronto suggests it is also possible the immune system has been triggered into action by the original infection in a way that it begins to attack some of its own tissues, a condition known as auto-immunity.
     Another infectious agent might also be operating, besides the spirochete, says Garth Nicolson, Institute for Molecular Medicine of Huntington Beach, Calif.
     The body is complex and dynamic. There may not be a simple explanation for all cases of Lyme disease.Complexity does not help patients deal with their disease, but more federal funding for Lyme might help medical scientists get a handle on what’s going on.
     Though there is a vaccine to battle Lyme, it has potential pitfalls, such as the need for reinoculation, and one should not depend on it.