Lyme disease
Daily Local News
Chester County, PA
by Tracy Behringer
7 June 2004Harvey Kliman knows that he was one of the lucky ones. When he was bitten by a deer tick in May 2000 he developed the tell-tale rash associated with Lyme disease, was immediately treated and recovered.
“But my wife wasn’t so lucky. She was ill with Lyme for four years. Her first symptoms were vertigo and dizziness,” recalled Kliman, the president of Lyme Disease Association of Southeastern Pennsylvania, which holds a monthly support group at the Kennett Friends Meetinghouse.
Kliman and his wife are just two of hundreds of area residents who have been treated for Lyme disease. In 2003, 908 confirmed cases of Lyme disease were reported to the Chester County Health Department, making last year the worst ever for Lyme in the county’s history. But even with the high incidence of the illness, there are still many inconsistencies and controversies surrounding Lyme disease, caused by a corkscrew-shaped bacterium, called a spirochete, which is transmitted to humans by the bite of an infected deer tick.
For that reason, another group — The International Lyme and Associated Diseases Society (ILADS) which includes several physicians from different types of medical practices — recently published a set of guidelines for the management of Lyme disease. The guidelines were published in January 2004 as the first evidence-based guidelines to assist physicians, public health officials and organizations involved in the evaluation and treatment of the disease.
”The fact that these guidelines are evidence-based and they were peer-reviewed by other physicians carries real weight,” said Kliman. ”Our group really supports and welcomes this information based on clinical experiences of physicians.”
Chester County Health Department director Dr. John Maher, said that he also believes the new guidelines will be helpful to those treating the disease. After looking over a summary of the guidelines posted on the ILADS Web site, Maher said that with the exception some guidelines that weren’t referenced, he agrees with the information presented.
According to ILADS, Lyme, first discovered in Lyme, Connecticut and still concentrated in the Northeast, is now prevalent across the United States. The group also notes that in the past, tick bites and bull’s-eye rashes have been important in diagnosing Lyme, but studies have shown that fewer than half of Lyme patients recall a tick bite or recall any rash at all.
“I’ve also heard of some people, especially dark-skinned people who don’t recognize a rash, or people (of any skin color) having rashes on their backs, and they don’t notice the rash. I actually know one person who was sick in the hospital (with the effects of Lyme) and no one ever noticed that he had a rash on his scalp until a doctor looked down at him (on the stretcher) and saw it through his hair,” Maher said.
Among the 25 symptoms of Lyme disease listed in the new guidelines are fatigue, arthritis, low grade fevers, night sweats, sore throats, swollen glands, abdominal pain, poor concentration, mood swings, depression, back pain blurred vision and headaches.
Referring to Lyme disease as the latest “great imitator,” ILADS says that it should be considered in the differential diagnosis of multiple sclerosis, ALS, seizure and other neurological conditions, as well as arthritis, Gulf War syndrome, attention-deficit hyperactivity disorder, fibromyalgia and other difficult-to-diagnose multi-system syndromes.
“This is also true. You used to think of syphilis, another spirochete infection, as the ‘great imitator,’” Maher said. “You may not start (looking at one of these illnesses as possibly) Lyme, but it should be on the list (of things to consider).”
The ILADS group also dismisses some of the common diagnostic tests for Lyme disease as unreliable. According to the group, the often-used ELISA test misses 35 percent of culture-proven Lyme and is unacceptable as the first step in screening. Maher said he was not an expert in infectious diseases and could not vouch for the strength of the tests.
“The advocacy groups say that the ELISA is unreliable, but I don’t have the background to argue that,” Maher said.
The new ILADS guidelines also recommend that Lyme disease patients be treated longer than the regular 30-day antibiotic regime. An uncomplicated case of chronic Lyme disease requires an average of six to 12 months of high dose antibiotic therapy, the report says. Many patients with Lyme disease require treatment for one to four years, or until the patient is symptom-free
The new guidelines address the incidence of co-infections often present in patients with Lyme disease. Recent studies suggest that patients with co-infections, such as ehrlichia and babesia, may have more severe cases and be more resistant to treatment. The conclusion of the ILADS group, therefore, is that there should be concurrent testing and treatment for co-infections in Lyme patients. Maher agreed that many Lyme patients have co-infections and said that through the years there have been too many stories to be ignored.
“Speaking as a physician for more than 40 years, and having spent 20 years in Chester County, I can say that (Lyme disease) is the most controversial disease I’ve ever encountered,” Maher said.
“The research tells us that we need sensitive diagnostic tests that can be replicated in different laboratories that will tell us positively, ‘yes, you have it,’ or ‘no, you don’t.”
The bottom line, Maher said, “Everybody should be aware of Lyme disease and Lyme disease prevention and everybody should push for more state and federal funding for more research on Lyme.”
For more information from the Chester County Health Department on Lyme disease, visit its Web site at www.chesco.org/health.
To read the ILADS Lyme disease guideline summary, visit www.ilads.org/guidelines_summary.