Lyme Disease Association, Inc.

Lyme Disease Association Information

CHESTER COUNTY, PA, JULY 12: In a recent mail survey sent to all 848 residential addresses in Pocopson Township, 46% of the responding households reported that at least one family member has had Lyme disease.

The survey was conducted by the Lyme Disease Association of Southeastern Pennsylvania, Inc. (LDASEPA), an all-volunteer non-profit group organized in 2003. A postcard survey was mailed in late June of this year, with a post-paid return card for residents to provide information about their family's experience with Lyme disease. The 292 households responding (a return rate of 35% of deliverable surveys) represent 842 family members ranging in age from 2 months to 102 years old.

Of the 842 individuals reported in the survey, 173 (21%) said that they had been diagnosed and/or treated for Lyme disease.

"We realize the respondents are self-selected and the results are not necessarily statistically accurate," said Doug Fearn, LDASEPA vice president and the designer of the study, "but we think it provides some idea of how prevalent this disease is in our community."

"Pocopson Township was chosen for this pilot survey because it is in the center of a Lyme-endemic area but has relatively few households, making the survey manageable for us. We plan to use the results of this small survey to show the need for a larger, statistically-valid survey of Chester County," Fearn said. "We're seeking funding for such a survey," he added.

"The number of cases reported to the Chester County Health Department, and to the national Centers for Disease Control and Prevention (CDC) is only a fraction of the actual number," said Harvey Kliman, PhD, LDASEPA President. "These agencies acknowledge that Lyme is under-reported, but no one is sure of the true number of cases. A larger study will give us a better answer. Lyme disease is a major public health problem that is not taken seriously by most government agencies or even by many in the medical community," he added.

When Lyme is diagnosed and treated properly and promptly, most people recover quickly. Untreated, or inadequately treated, Lyme disease can cause serious life-long health problems, sometimes leading to disability. People with persistent Lyme disease often experience unrelenting, debilitating fatigue, cognitive problems, neurological damage, arthritis, heart damage, vision or hearing deficits, or psychiatric problems.

Flu-like symptoms (and a characteristic "bull's eye" rash in less than half of the cases) usually appear within a month after a bite by an infected tick, and may go away with or without treatment only to flare up with complications months or years later. Relatively few doctors are aware of the serious complications that can result and tend to use out-dated treatment guidelines that are often ineffective. Laboratory tests are frequently inaccurate.

The LDASEPA provides education and support with monthly meetings featuring Lyme experts, free and open to the public. Their Web site, www.LymePa.org, provides full details. A telephone hotline (610-388-7333) is also available for questions. Their publication, "Lyme Disease: The Basics" is a plain-language introduction to tick-borne diseases and single copies are available free of charge. Now in its fourth printing, this 28-page booklet has been requested by more than 70,000 people around the U.S.

Blue Cross Press Release:
Rhode Island is to be congratulated on the passage of its bill protecting doctors who treat Lyme disease long-term, as well as the adoption of the provision by Blue Cross of Rhode Island, which enables patients who have chronic Lyme disease receive treatment. The Governor’s Commission on Lyme Disease and Other Tick-borne Diseases is to be commended for holding two separate hearings with over 12 hours of significant and often moving testimony from physicians, advocates and patients. The Lyme Community Coalition of Rhode Island and the South Coast Lyme Action Group did a phenomenal job helping to organize the individuals who presented testimony, obtaining media coverage and lobbying legislators.

Blue Cross Resolution: Revised 8/22/02
Presently, Blue Cross covers up to four weeks per year of intravenous antibiotic therapy deemed medically necessary by a treating physician for certain illnesses including Lyme disease. Blue Cross agrees with and will adopt the following statement of its policy in its physician’s manual regarding testing and treatment of Lyme disease to become effective by July 1, 2002.

New England Governors' Conference, Inc. Resolution:
The LDA is very excited that the New England Governor's Conference passed Resolution 166, A Resolution of the New England Governor's Conference, Inc. Concerning Lyme Disease & Other Tick-borne Illnesses. Introduced by Rhode Island Governor Lincoln Almond's office, it was adoption certified on August 26th, 2002, and signed by Chairman Almond. Other Governors who make up the Conference are Jane Swift, MA; John G. Rowland, CT; Angus S. King, Jr., ME; Jeanne Shaheen, NH; and Howard Dean, MD, VT.