Local Forum On Lyme Disease Draws A Crowd

By Kaaren Valenta

Donna McCarthy knows exactly what it feels like to have Lyme disease. Ms McCarthy, who is the director of the Newtown Health District, had Lyme three times in 18 months several years ago.

“I’ll never know if I got it again from another tick bite, or if it had just been in remission and then came back,” she said. “I was really sick the first time and when it came back, I recognized the symptoms and knew exactly what it was.”

Ms McCarthy was one of several hundred people who attended the Monday evening’s fifth annual Lyme Disease Forum at the Fireside Inn. Sponsored by the Newtown Rotary Club and the Newtown Lyme Disease Task Force, the event drew an audience composed of individuals very much like Donna McCarthy –– those who have had Lyme disease and recovered, those who have chronic Lyme disease, or who have friends and family with Lyme disease.

Almost everyone in the room stood up when task force member Kim Harrison began the evening by asking how many of the audience had been personally affected by Lyme disease.

“Lyme is the fastest growing disease in Connecticut,” Ms Harrison said. “More than 50 percent of the cases occur in children under the age of 12. In the past two years the teachers in the Newtown schools have removed 200 ticks from children.”

Ms Harrison introduced the guest speaker, Dr Bernard Raxlen, a neuropsychiatrist who specializes in the diagnosis and treatment of complicated Lyme disease and other tick-borne diseases. Dr Raxlen said the medical community is embroiled in a controversy over the diagnosis and treatment of Lyme.

“In 15 years I have treated more than 2,000 cases of chronic borrelia [Lyme disease],” Dr Raxlen said. “The bacteria can penetrate almost any tissue and reside intra- and extracellular for years. And if you don’t accept that it can be an intracellular organism, you are just spinning your wheels.”

Lyme disease can be a serious, costly, long-lasting illness if not properly diagnosed and adequately treated during its earliest stages, he said. In the absence of a definitive diagnostic test, medical professionals face a great challenge in diagnosing the disease and getting insurance companies to agree to pay for the treatment.

A practicing physician in Greenwich who is a founding member of the International Lyme and Associated Diseases Society, Dr Raxlen took issue with the Infectious Disease Society of America (IDSA), which he said has been dragging its heels in accepting the existence of chronic Lyme disease and the use of repeated or prolonged antibiotic therapy in treating it.

“ISDA says that ‘to date there is no convincing public data showing that repeated or prolonged antibiotic therapy works’ and there is ‘insufficient evidence to regard chronic Lyme disease as a separate diagnostic entity,’” Dr Raxlen explained. “I have instances of dismissals of insurance coverage because of the IDSA guidelines. Personal physicians also are going by these guidelines. The guidelines have to be changed. The data is there.

“Physicians can only use limited reporting criteria set forth by the Center for Disease Control to diagnose borrelia, and there is also the question of laboratory accuracy,” he said. “Insurance companies will do anything they can to deny coverage because they look at the bottom line.”

Lyme disease has reached epidemic proportions in Connecticut, he said. A poll by Quinnipiac University showed that 40 percent of 840 families polled had one or more members infected with Lyme.

“When borrelia is diagnosed, the standard treatment is three to six weeks of oral antibiotics or three to six weeks of intravenous treatment,” Dr Raxlen said. “But chronic and persistent Lyme with co-infection [by other tick-borne diseases] invariably is overlooked and not accounted for.”

Persons who are infected by Lyme disease, babesiosis, ehrlichiosis, and other tick-borne diseases can get a confusing array of symptoms that may be continuous or intermittent, he said.

“The result may be a diagnosis of fibromyalgia, chronic fatigue syndrome, depression, seasonal affected disorder, stress, or ‘atypical’ forms of other diseases –– but not chronic borrelia,” he said. “The diagnosis fails to take into account the sophisticated avoidance system of the borrelia bacteria which can hide in the body for years.

 “Borrelia can mutate and has many ways to avoid the immune system. The problem is that it is multisystemic. It can transverse the blood-brain barrier and enter the central nervous system –– that’s why we see neurological and neuropsychiatric systems,” he said.

Patients who are seemed to have been cured of Lyme disease may experience a major relapse after severe stress, trauma, surgery, pregnancy, illness, or a condition that required the use of antibiotics, he said. But the immune system also gains a whole new set of information about the organism and in many cases is able to counteract it.

“You can get mild relapses that look like [Lyme] is coming back, but it can be your immune system working,” Dr Raxlen said. “Does it ever go away? Probably not.”

Dr Raxlen said that in his practice women outnumber men by 2-1 or 3-1. “Men most of the time have a speedier and more complete recovery. I think that higher levels of testosterone appear to protect men,” he explained. “In women the symptoms often are connected to the menstrual cycle, there is a worsening of endrometrosis, and an increased risk of miscarriage.”

In response to questions from the audience, Dr Raxlen said is not an authority on the prevention of Lyme disease, but in his experience a fence to keep out deer, which carry the deer ticks, probably is the best protection for a family. “A deer fence cuts 90 percent of the tick population, although a fence can be expensive.”

Dr Raxlen said that DEET-based insecticides should not be used on children’s skin, just on their clothing, so he often recommends that parents make a nontoxic repellent by combining Avon Skin So Soft, tea tree oil, and deodorized garlic. “Make it into a mush and put it on the skin of the child,” he said.

Dr Raxlen said he reviewed patient files from 1980 to 1988, when he became more aware of Lyme, and found 40 cases that looked like classic Lyme disease. The fact that these patients apparently were cured of their symptoms may be because of dietary changes and other treatment, including supplements, to boost their immune systems, he said.