Long-Term Lyme Disease Antibiotic Therapy Beliefs Among New England Residents

Abstract

Most physicians prescribe Lyme disease antibiotic therapy regimens that are recommended by the Centers for Disease Control and Prevention, the Infectious Disease Society of America, and the National Institutes of Health. An alternative approach by some physicians consists of prolonged antibiotic treatment for >2 months because they believe that Lyme disease often results in persistent Borrelia burgdorferi infection. Understanding how patients perceive the disease is important for effective doctor–patient communication. We conducted interviews and surveys on Block Island, Rhode Island, and Storrs, Connecticut, to explore the public perception of persistent symptoms following Lyme disease and the need for long-term treatment. Most of our participants believed that symptoms and the Lyme disease bacteria can persist after antimicrobial therapy for Lyme disease. When asked about the value of continuing antibiotic treatment for >2 months, about half thought that it was sometimes useful and about a quarter thought it was always useful. Almost all of the respondents stated that they knew people who had experienced Lyme disease, and these personal observations were more frequently cited as an important source of Lyme disease information than official sources such as medical professionals. We conclude that healthcare workers should review the scientific literature regarding appropriate therapy for Lyme disease, discuss such information with their patients, and identify sources of information that their patients can review. Medical societies, private foundations, and State and Federal Health agencies should increase efforts to educate physicians and the general public about the standard diagnosis and treatment of Lyme disease and provide additional funding to determine why some people experience persistent symptoms following this infection.

Introduction

M ost physicians prescribe antibiotic therapy regimens for Lyme disease that are recommended by the Centers for Disease Control and Prevention (CDC), the Infectious Diseases Society of America (IDSA), and the National Institutes of Health (NIH) (Wormser et al. 2006, CDC 2008). These recommendations are based on data demonstrating that most Lyme disease patients experience a relatively brief infection that resolves promptly following standard antimicrobial therapy. Additional data indicate that only a few patients experience prolonged symptoms (“Post Lyme Disease Syndrome”), likely due to autoimmune phenomena triggered by Borrelia burgdorferi infection (Steere 1989, Klempner et al. 2001, Kaplan et al. 2003, Krupp et al. 2003, Steere and Glickstein 2004, Wormser et al. 2006, Auwaerter 2007, Feder et al. 2007, Fallon et al. 2008, Halperin 2008, Baker 2010, Chandra et al. 2010). An alternative view contends that Lyme disease symptoms often continue for months or even years because of persistent B. burgdorferi infection, and that prolonged antibiotic therapy for >2 months is necessary to achieve cure (Wormser et al. 2006, Feder et al. 2007, Halperin 2008, Cameron 2009). Several randomized, double-blind, placebo-controlled trials have shown little or no benefit and considerable risk of serious adverse events from such prolonged therapy (Klempner et al. 2001, Kaplan et al. 2003, Krupp et al. 2003, Oksi et al. 2007, Fallon et al. 2008).

Although several studies have addressed the public perceptions of Lyme disease risk and prevention (Herrington et al. 1997, Herrington 2004, McKenna et al. 2004, Johnson and Feder 2010), few have inquired about beliefs regarding persistent symptoms and prolonged antibiotic therapy. It is thus unclear whether residents in endemic areas believe that prolonged illness caused by chronic infection is common, or whether their concepts of Lyme disease illness and treatment are congruent with standard medical practice. Accordingly, we sampled the views of people living in Connecticut and Rhode Island, where Lyme disease is highly endemic. Our sampling included questions about prolonged illness and the effectiveness of antibiotics as part of a larger study examining the applicability of the health belief model in predicting Lyme disease prevention behaviors (Rosenstock 1990, Macauda 2007).

Materials and Methods

Study sites

The study was conducted on Block Island, Rhode Island, and at The University of Connecticut in Storrs/Mansfield, Connecticut. Block Island is located 13 miles off the coast of Rhode Island and has a year-round population of about 1000 residents that swells to >12,000 in the summertime. Over a third of the Island has been conserved (Block Island Chamber of Commerce 2006, The Nature Conservancy 2007); deer are abundant; and Lyme disease, human babesiosis, and human granulocytic anaplasmosis are highly endemic (Krause et al. 2003). The University of Connecticut has about 21,000 students, 3000 staff, and 1200 faculty. The University spans 4000 acres in East Central Connecticut (UCONN 2007) and is the largest employer in the Mansfield area (CERC 2010). Most of the surrounding area consists of farmland, conservation trusts, state and town parks, historic homes, and dispersed semirural residential housing (Town of Mansfield 2007). Lyme disease is endemic here.

Survey and subject sampling

Research was carried out in two phases: A qualitative interview component was carried out with 20 people on Block Island and in Storrs regarding Lyme disease that allowed us to formulate a more precise sampling questionnaire. The sample sizes were based on the goal of saturation (i.e., additional participants yield no new findings). Existing qualitative research indicates that, in any reasonably homogeneous population, the diversity within the group on selected variables reaches saturation at 20–30 participants (Morse 1994). Block Island subjects were asked to participate at the Block Island Medical Center while attending a biannual serosurvey. Connecticut participants were identified via convenience sampling and word of mouth in the community. Interviews lasted for about 30 min and covered beliefs about the cause, clinical complications, and treatment of Lyme disease.

Following the interviews, an identical self-administered and anonymous survey was launched at the Connecticut site in May 2007 and the Block Island site in July 2007. The final instrument consisted of 30 questions that elicited data in six domains: (1) knowledge of Lyme disease etiology and symptoms, (2) identification of environments likely to result in acquisition of Lyme disease, (3) personal experience with Lyme disease (including either self or family member or friend), (4) types of outdoor activities, (5) knowledge, attitudes, and behaviors related to Lyme disease treatment and prevention measures, and (6) sources of information about Lyme disease. We have included pertinent questions in the Results section.

The survey was distributed in Connecticut using a survey hosting service and participants were recruited from a University of Connecticut listserv, which is used for general unofficial university announcements concerning activities and events on campus. It is open to students, faculty, and staff, and had ∼3300 subscribers at the time the survey was launched. Each subscriber was sent an email invitation to participate in the survey. A total of 347 people, almost all of whom were staff members or faculty, completed the online survey. On Block Island, 225 individuals were randomly selected from the Block Island telephone directory to participate in the survey. The directory includes full time and part time residents. A random number generator was used to select addresses and a questionnaire then mailed. For example, if number 14 was generated, the 14th residence was selected from the phone book (businesses were excluded). Seventy-four surveys were returned. At both sites, respondents were advised that by completing the survey, they were consenting to participate. The protocol for the study was approved by the Institutional Review Boards for the protection of Human Subjects at The University of Connecticut and the Connecticut Children's Medical Center. Statistical analysis was carried out using SPSS Version 16.0.

Results

Demographics of the study population

Of the 421 subjects who enrolled in our study, 121 were men and 284 were women (16 individuals did not provide gender information) with a mean age of 52 years (Table 1). Almost half of our sample had a graduate school degree, almost a third had a college degree, and the remainder completed or had some high school. Almost all (93%) of the respondents reported that they lived in either a suburban or a rural area. Because there were few differences in responses between study sites, the majority of results are reported for both sites combined. In cases where there were statistically significant differences between sites (p < 0.05 for chi-square or t-test), results for each site are reported separately.

Table 1.

Characteristics of the Study Population

				Percentage who graduated
Group	n	Mean age	Gender (% female)	High school	College	Master's or doctorate
Study populations
Block Island, RI	74	62	64%	12%	45%	42%
UCONN/Storrs, CT	347	50	71%	23%	29%	46%
Total	421	52	70%	21%	32%	46%
Total populations^*
Block Island, RI	1010	43	51%	38%	41%	15%
Mansfield, CT	20,270	22	51%	32%	24%	35%
United States	300 million	37	51%	50%	22%	9%

2000 Census.

Knowledge of symptoms and outcomes

Study participants were knowledgeable about the transmission, symptoms, and complications of Lyme disease. Almost all (99%) of the informants knew that Lyme disease could be contracted through the bite of a deer tick. Participants were more aware of the earlier symptoms than the later complications. Most knew that the infection is associated with a rash (94%), joint aches (97%), joint swelling (76%), or headache (74%). In contrast, less than half were aware of heart palpitations (Connecticut = 33%, Block Island = 48%), or certain neurologic complications, including cognitive defects (35%), tingling of the hands and feet (21%), or dizziness (28%). Respondents also recognized that Lyme disease has a range of outcomes, as almost all (94%) agreed that “Lyme disease runs the range of being quite mild to quite severe.”

Respondents were very aware of areas that were high-risk for tick bites, as 93% of informants correctly labeled “a field of tall grasses” as a high-risk area, 94% said the same for “walking through the woods (no trail),” and 78% said the same for “low lying brush at the edge of the woods.” The participants in this study possessed a good level of practical knowledge about Lyme disease, its mode of transmission, where they might be at risk of contracting it, and the general range of symptoms and complications.

Belief in the value of antibiotics for treatment of Lyme disease

During the interviews, some informants expressed doubts as to the effectiveness of antibiotic therapy and many suggested that infection could remain after antibiotic treatment:

“I think it stays with you pretty much forever. From my understanding of it, which isn't great, I was always under the assumption that you basically always have it. It's just that you get the symptoms under control and then hopefully you're ok.” —Participant #7, Connecticut female, 30s

“I believe you can control the symptoms, keep them in line, but I don't think you can cure” —Participant #12, Connecticut male, 50s

On the survey, more than three quarters of the respondents (Connecticut = 78%, Block Island = 89%), agreed with the statement, “Even after someone is treated with antibiotics, the Lyme bacteria can still be in their body,” and two-thirds of the respondents (67%) agreed that they “know someone that still suffers from Lyme disease, even after treatment.” About a third to half (Connecticut = 37%, Block Island = 53%) agreed that, “Antibiotics will cure Lyme disease,” whereas a third (30%) agreed that, “The antibiotic only helps symptoms but is not a cure.” Forty-one percent of respondents agreed, “many people never get better after Lyme disease,” and only 4 respondents (1%) agreed with the statement, “Lyme disease is always curable, no matter when it is discovered.” Finally, when asked, “When someone is sick with Lyme disease, how useful are long term antibiotics (treatment lasting >2 months)?” and presented with the choices rarely useful, sometimes useful, always useful, and don't know, 46% answered “sometimes useful” and 21% answered “always useful.” We chose 2 months because the maximum duration of antibiotic therapy for uncomplicated Lyme disease recommended in the 2006 IDSA Guidelines is 4 weeks with a second 4-week course of antibiotic recommended for recurrent arthritis. This duration constitutes standard practice as endorsed by the IDSA, CDC, and NIH. In sum, many of our respondents view Lyme disease as an illness that may be difficult to cure and are uncertain about the effectiveness of antibiotic therapy, especially if given for the standard course.

Sources of knowledge about Lyme disease

An important part of understanding public views on Lyme disease treatment is examining sources of Lyme disease information, including personal experience with the disease. About a quarter (24%) of the survey respondents reported that they had been found to have Lyme disease in the last 5 years, although we were unable to verify the accuracy of the diagnosis because of the anonymous nature of the survey. We asked those who had contracted Lyme disease to choose a summary phrase for their experience (“not ill at all,” “a little ill but got better quickly,” “a little ill, but it took a long time to get better,” “still a little ill,” and “still very ill”) and 14% reported that they were not ill at all, whereas 54% reported that they recovered quickly after feeling a little ill or very ill.

Some participants reported prolonged Lyme symptoms, both in the interviews (“I still have symptoms but I'm not sure if they're symptoms of Lyme or symptoms of just daily, your run down, or I'm getting older. It's hard to tell”—Participant #20, Connecticut female, 30s), and in the survey, where a third of the respondents who reported having Lyme agreed, “sometimes I wonder if my Lyme disease is really gone.”

In the quantitative surveys, over three quarters of the respondents knew a friend or relative who previously reported having been found to have Lyme disease. When asked to state how many people they knew who had experienced Lyme disease, survey respondents reported on average that they knew six people who had Lyme disease (Connecticut = 5, Block Island = 13; 5% trimmed mean), two of whom they would classify as “very ill.”(Connecticut = 2, Block Island = 4; 5% trimmed mean). In contrast, 69% agreed that “Most people I know with Lyme disease are a little sick, take medicine and then get better.” Thus, personal experience with a range of Lyme disease outcomes was commonly reported among our study subjects, and appeared to have significant impact on their beliefs about the disease. This was confirmed on the survey where over half of the respondents (64%) reported gaining “a lot” or “all” of their knowledge of Lyme disease from their friends and relatives who experienced the disease compared to only a quarter (24%) who reported gaining “a lot” or “all knowledge” from physicians. Thirty four percent of the Connecticut sample and 54% of the Block Island sample reported gaining “a lot” or “all” of their knowledge by having had the disease.

Slightly over half (58%) received “a lot” or “all” of their information from pamphlets and printed material, though in the interviews, few participants could recount specific pamphlets or printed material they had read. Few subjects cited the internet as an important source of information in the interview portion of the study. Lyme support groups were the least common reported source of information for our respondents with only 0.12% of the Connecticut sample and 10% of the Block Island sample reporting they derived “a lot” or “all” their knowledge about Lyme disease in this manner. Less than a quarter of our sample received “a lot” or “all” of their information from television, radio, or veterinarians. More than half of our respondents (63%) who reported that they received “a lot” of information from a doctor also indicated that they received “a lot” of information from others who have had Lyme disease. Thus, sources of information are not mutually exclusive, and the influence of information from a doctor is difficult to separate from other sources.

Discussion

The majority of our survey respondents believe that the Lyme disease spirochete can persist following antibiotic treatment, that a standard course of treatment for 2 to 4 weeks is often not curative, and that long-term antibiotic therapy of >2 months is sometimes useful. This includes a majority of people who had experienced only a brief period of symptoms associated with Lyme disease. The respondents were generally well educated and had a good understanding of the transmission, symptoms, and acute complications of Lyme disease (Macauda 2007). Almost all participants reported knowing at least one person who had personally experienced Lyme disease, most of whom reported having a brief illness that was cured following antibiotic treatment.

The most common source of information about Lyme disease among our study subjects was from a friend or family member who reported having had Lyme disease. Pamphlets or written information were the second most common reported source of information, but interview respondents only had a general sense of the printed material they had seen and tended not to recount specific examples. We did not ask about the origin of the pamphlets or written material but at least some of this is likely to have come from Lyme support groups who do not agree with the standard of care endorsed by the CDC, the IDSA, and the NIH (Wormser et al. 2006, CDC 2008, Baker 2010). Less than 10% of our subjects reported receiving information about Lyme disease directly from Lyme support groups. Relatively few people acquired information about Lyme disease from physicians and very few participants in the interview mentioned obtaining information from State Health Departments or the CDC (Macauda 2007). This result indicates that for our sample, individual beliefs about Lyme disease are influenced more by having experienced it themselves and from family or friends who reported it, than from the medical community.

Our study was subject to several limitations. We enrolled a randomly chosen population sample on Block Island, but our response rate showed that a substantial portion of those contacted did not participate, although the response rate was typical for mail-based or Web-based unsolicited surveys without incentive or follow-up (Cook et al. 2000). Our study populations were older and more educated than the local or national populations; however, preliminary regression models showed that these demographic variables did not explain a large portion of the variance in responses in our survey: The highest R ² (representing the fraction of variation accounted for by the model) was 0.18 (18% of variation), the lowest was 0.1 (10% of variation), and several models revealed no significant independent variables. More importantly, our subjects reported Lyme disease at a rate several magnitudes higher than that of officially reported rates in highly endemic areas. Due to the anonymous nature of the study, we could not ascertain if the diagnoses of Lyme disease were accurate. Our subjects also reported knowing more people who had experienced Lyme disease than found in other studies; 80% for our study compared to 42%–55% for other studies (Brown et al. 1992, Herrington et al. 1997, Herrington 2004, McKenna et al. 2004). This suggests that those who answered the survey were more personally invested in Lyme disease than those who did not and that some of them were probably misdiagnosed, findings that would likely bias our survey results in favor of more nonconventional opinions. Interestingly, the majority (69%) of those who reported no personal history of Lyme disease and no close family members or friends with the disease believed that Lyme could persist after treatment. Although most people in the initial phase of the study did not cite the Internet as an important source of information and we did not include questions about it in the second phase of the survey, it is likely that many of our subjects did derive information about Lyme disease from this source (Sood 2002, Cooper and Feder 2004). Our findings may overestimate the percentage of people who believe that Lyme disease persists and requires prolonged antibiotics; however, they indicate that such beliefs are far more common among the general public than the physicians who treat them (Johnson and Feder 2010).

It is understandable that people may believe that Lyme disease infection persists, even following standard antibiotic therapy. Some patients do experience prolonged post Lyme disease symptoms, whereas others have prolonged symptoms due to other medical conditions that are misdiagnosed as Lyme disease. It requires fairly sophisticated medical knowledge to know that persistent symptoms following Lyme disease does not necessarily mean that the infection has persisted, and it is very difficult for a nonmedical person to determine the accuracy of a Lyme diagnosis for themselves, their family, or their friends. In an endemic area, it appears that many people have heard of people with prolonged Lyme disease symptoms, and a few may have experienced this themselves. Because very few patients read the medical literature, or know about autoimmune conditions and other potential noninfectious causes of prolonged symptoms following an infection, the conclusion that Lyme disease can commonly persist as an active infection follows from what they observe in themselves, their friends, and their family.

Our results for Lyme disease knowledge among the public are similar to studies of other diseases. Walter et al. (2010) reported that cancer risk assessment of skin moles was heavily influenced by the nonmedical literature and experiences of family and friends, and was not congruent with medical opinion. The importance of informal knowledge about illness in individuals' health beliefs and decisions was also reported by Cytryn et al. (2009) in relation to myocardial infarction. Gazmararian et al. (2010) found that in relation to child vaccination for influenza, study participants used a lay definition of flu that included colds, stomach viruses, and other illnesses, in addition to clinical influenza, and conveyed a lack of knowledge about both the level of protection afforded by the vaccine and the health risks of the vaccine.

Although public knowledge of Lyme disease is consistent with that of other major medical conditions in the public consciousness, the widespread belief in chronic Lyme presents challenges for this disease at this point in time. The concept of chronic Lyme disease has entered the public discourse in newspaper articles (Callahan and Tsouderos 2010, Macy 2010), the realm of public policy [as several states have passed legislation protecting doctors who provide prolonged antibiotic therapy (Baker 2010)], and has generated conflict both within academia and with the public at large (Sigal and Hassett 2005, Stricker et al. 2005, Auwaerter 2007, Callahan and Tsouderos 2010, Macy 2010). Thus, public understanding of Lyme disease and its course matters, and public opinion can alter how the disease is treated, both at the population level through legislation, and at the individual level in the doctor's office. While lay people cannot be expected to know specific CDC, IDSA, or NIH guidelines on Lyme disease, it is not unreasonable to expect that most people living in Lyme disease-endemic areas learn that Lyme disease usually presents with a red rash that can be accompanied by viral-like symptoms, that antibiotics given for 2 to 3 weeks will result in the eradication of the Lyme bacteria, and that such treatment will clear symptoms in the overwhelming majority of cases. Given the serious harm to patient health that may occur as a result of unnecessary prolonged therapy or the failure to seek appropriate care for symptoms mistakenly diagnosed as Lyme disease, additional work needs to be done to better understand how accurate information about Lyme disease can effectively be transmitted within a community. Our findings suggest that medical doctors need to make certain that they are knowledgeable regarding the cause, clinical course, complications, diagnosis, prevention, and current appropriate therapy guidelines for Lyme disease and other tick-borne diseases and provide that information to all their patients. Medical societies, private foundations, and State and Federal health agencies should increase efforts to educate physicians and the general public on the appropriate diagnosis and treatment of Lyme disease and provide additional funding to determine why some people experience persistent symptoms following this infection.

Footnotes

Acknowledgment

This study was funded by the University of Connecticut.

Disclosure Statement

All Authors: No competing financial interests exist.

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