I am very proud to launch the first phase of the Lymebrary, a project of the Lyme Disease Digital Library.  The idea for the project was born over 2 years ago, when I saw that there was a huge need to pull together tick-borne disease resources from wherever they could be found, and make them searchable.  Patients could certainly benefit from the convenience of having one trusted portal, as could family members, healthcare professionals, attorneys, legislators, insurers, and advocates.  Researching toward a cure and extending compassion toward the patient are two sides of the same coin when it comes to tick-borne disease, and I believe that good information is the key to improving both.

            There are many points of view when it comes to tick-borne disease and its origins, vectors, chemistry, symptoms, and treatments.  New facts continue to be uncovered monthly.  Sometimes good information comes from humble research.  Sometimes illogical conclusions come from impressive research.  Articles, handouts, and websites of all types exist all over the Internet, and many books dealing with the subject are in print.  I realized that it would be my task to pull together quality information, as in a library, and offer it without comment, trusting in library users to discern what would serve their particular needs.

            One of the problems inherent in Internet searching is that much information is hidden on the “invisible Web” – databases and online scientific journals that are available by subscription only.  In a future phase of the Lymebrary, we hope to offer some of these limited-access resources.  But in the meantime, if you are looking for something important to you, contact us to see what we can do to get it to you.

            Over time, a number of individuals have stepped forward in support of the project, for which I am extremely grateful.  Let me extend my thanks to the board of directors and the advisory board of the Lyme Disease Digital Library, and to so many others who offered good questions and good feedback.  I promise to thank you in person when I see you.  Thanks also to the faculty and advisors at Syracuse University, the University of Wisconsin, Rutgers University, and the University of Pittsburgh for fielding my endless questions, comments, and papers from the perspective of creating the Lymebrary.  Thanks also to Act of Design for making the vision a reality, and to the director and staff of the Auburn Public Library for patiently listening to my rants and my discoveries.

            I welcome your questions, your feedback, and your suggestions at Contact Us.  Please check back often, as we will be adding new materials and new facets to the site.  This blog will serve to offer tips, announce new features, and talk about Lyme disease issues.  The Quote of the Week is there to offer food for thought.  Only one thing will make me prouder than the launch of this site, and that will be the day we can dismantle it, because the cure for Lyme disease will have been found, and we will no longer be needed.

I would like to begin the LymeQuotes blog with the sense of excitement at beginning a new discovery. The quote is from one of my favorite books on Lyme, Polly Murray’s The Widening Circle: A Lyme Disease Pioneer Tells her Story.  One of the two women whose calls prompted the Yale investigation into the epidemic around Lyme, CT (Judith Mensch was the other), Ms Murray recalls her thoughts on that first trip to Yale to describe her and her family’s symptoms:

“Isn’t this exciting?” one doctor said. “There is certainly something unusual happening here. We must get into the field to investigate further. Bring in the patients to examine here at the clinic. We will map out the cases road by road.” They were spirited, like archaeologists who’d unearthed an intriguing artifact, some bit of pottery that promises even greater riches will surface with just a few more turns of the spade.

I certainly shared their enthusiasm. On the other hand, I’d been “in the field” for awhile, and I knew it wasn’t going to be easy to figure everything out so fast. Whatever this illness was, it was complicated, in that it involved so many systems of the body, and my instincts told me it was going to elude definition for some time to come.

– Murray, P. (1996). The Widening Circle: A Lyme Disease Pioneer Tells her Story. NY: St. Martin’s Press. p. 101.

As we debut the Lymebrary, I share that enthusiasm of exploring new territory, along with a sense of realism born of experience: we still have a long way to go.