Touched by Lyme

Just last week, southern California Lyme patient Meredith Hiney heard about the upcoming 2010 CALDA Lymewalks, and “instantly knew” that raising money for Lyme disease research was something she wanted to do. Following the easy directions on the CALDA website, she set up her own fundraising page, emailed the link to family and friends, and in less than a week raised more than $1500 for Lyme research. Who is Meredith Hiney, and why is she fundraising like the energizer bunny?

This book is not about how to get sick or how to stay sick. It's about how to "be" when you are sick. How to have a worthwhile existence, finding meaning, purpose and joy, even when chronic illness seems to have stolen your life away.

Anne Mears, a Lyme activist from southern California, shares practical advice about setting up a Lyme display at a public event.

Kris Newby, senior producer of the awarding-winning Lyme disease documentary, recently addressed the Institute of Medicine's listening session for "The State of the Science" of Lyme and other tick-borne infections. She observed that Lyme research has been tightly controlled by the same lead IDSA Lyme guidelines authors for the last 20 years–while we still have no reliable testing and no effective treatments for patients who fail the IDSA protocols.

Last week, Lyme Times assistant editor Pam Cocks testified via telephone before the Institute of Medicine. Her adult daughter, Lizzy Cocks, sent the following message to her co-workers, to help educate them about Lyme disease.

More testimony given to the Institute of Medicine about Lyme disease. Lyme Times Associate Editor Pam Cocks, the mother of two adult children with Lyme, points out that all of the controlled trials cited by the IDSA guidelines involved a mere 221 patients.

Northern California Lyme activist Sylvianne Schwartz took part in the Institute of Medicine's June 15 "listening session" regarding Lyme disease. Here's the text of her remarks.

The Institute of Medicine, part of the National Academy of Sciences, is in the midst of taking a look at Lyme disease. In April, the IOM heard from various scientists. Today, the IOM committee held the second of several "listening sessions" via telephone conference call, which allowed Lyme patients and advocates to offer their opinions as well. Here's what I told the committee.

A Pennsylvania school district is making life even more difficult for a light-sensitive Lyme patient. Family therapist Sandy Berenbaum, who specializes in helping Lyme families deal with the school system, offers her perspective.

Any light brighter than a cell phone's glow causes seizures for this teenager with Lyme disease. Yet she wants a graduation photo in the school yearbook. Unfortunately, school officials won't allow the inventive solution she devised.