The Many Mysteries

Of Lyme Disease

To the Editor:

As support group facilitators, we have heard hundreds of heartbreaking stories regarding the debilitating effects of misdiagnosed or inadequately treated Lyme disease. Since recent news reports suggest that Lyme is easy to spot and easy to cure, we would like to share our observations with the hope of preventing advanced disease.

The diagnostic bull’s-eye rash does not always appear. When present, it may be overlooked or mistaken for other conditions. Of special import — many support group visitors recognized the rash, received standard antibiotic therapy, then went on to develop serious systemic complications, including Lyme meningitis. While the rash generally indicates early disease, symptoms of disseminated illness may occur simultaneously.

Unfortunately, late-stage Lyme disease has numerous possible manifestations and may be confused with a host of other illnesses. Support group attendees have been diagnosed with multiple sclerosis, arthritis, chronic fatigue syndrome, fibromyalgia, early menopause, Alzheimer’s disease, sudden-onset psychiatric illness, and ADHD before finding relief under the care of Lyme specialists.

While we tend to see patients with difficult histories, their stories are compelling and far too common to be dismissed in highly endemic Connecticut. Two hundred patients attended our May meeting, eager to hear a neurologist speak. Other recent Connecticut seminars have also drawn hundreds of participants. Surveys conducted across Fairfield County reflect the widespread and serious impact of this epidemic.

Generally, support group members have improved with aggressive antibiotic therapy. Over the past five years, we have observed that standard doses have little effect when Lyme is firmly entrenched. On the other hand, we have seen numerous lives transformed by long-term treatment.

Yet we know other factors, some known and some yet to be discovered, complicate recovery. A positive outcome may depend upon time elapsed before diagnosis, strain(s) contracted, antibiotics utilized, duration of treatment, and elements unique to each individual. It is essential to note ticks are now known to harbor other illnesses such as babesiosis and ehrlichiosis. It is even possible for one tick to carry two or more diseases. Some of these pathogens respond to Lyme treatment, while others require different therapies. Since blood tests for all remain unreliable, and since symptoms vary, researchers have much to investigate before reaching definitive conclusions.

Many mysteries remain to be solved. These enshroud an already contentious medical debate. Disagreements abound regarding multiple aspects of diagnosis and treatment. Patients, overwhelmed by disabling symptoms, may be as devastated by these disputes as they are by their illness. Nevertheless, we urge all patients, and all those threatened by tick-borne illness, to educate themselves.

Please feel free to contact us for more information at kos1@earthlink.net or 203-762-2437. The support group for adults meets the second Wednesday of every month at 7:30 pm. Teens meet the first Tuesday of the month at 4:30. Both sessions take place at Comstock Community Center, off Route 7 in Wilton. We may also begin a group for younger children and hope to hear from those who may be interested.

Sincerely,

Douglas Bunnell, PhD

Yvonne Bokhour Kosakow

Jay Lux, BSN, MPH

Patrick McAuliffe, MEd

Wilton Lyme Disease Support Groups

27 Heritage Court, Wilton                                               July 7, 2003