When my son Will was 10, he rolled out of bed one morning limping and complaining of painful, swollen knees. In the days that followed, he suffered from headaches and fever, disorientation and fatigue. We contacted our physician, who suspected Lyme disease and immediately ordered tests.
Will's tests came back positive for Lyme. My wife and I were surprised, as we had no warning. We'd never seen a tick or a bite mark on our son, let alone one of those tell-tale bulls-eye rashes.
We dedicated ourselves to learning more about Lyme disease and its treatment, and spent hours combing through the often conflicting literature. We spared no expense diagnosing and treating Will's disease, including going to a specialist who started Will on a lengthy course of antibiotics.
At first, we questioned why Will had been so unfortunate. But we gradually discovered he was one of the lucky ones. Our doctors caught the disease before it had infected his nervous system. The antibiotic treatment worked, and today Will is leading the normal, healthy life of an active high school teenager.
Still, our experience made me wonder about those parents and their children who aren't so lucky. Parents who don't have the resources, time, or ability to find the best treatment options for their child, or kids whose Lyme disease wasn't caught at an early stage. Realizing how fortunate my family had been, I wanted to help other families with children suffering from Lyme.
To find out how I could help, this month I attended the inaugural conference of Partners Against Lyme, or PAL. PAL is a new alliance of Lyme awareness organizations in the U.S. and throughout the world formed to advocate for, and protect the rights of, patients suffering from Lyme and other tick-associated diseases. With members in 44 states and eight countries, PAL seeks to unite Lyme organizations so they may collectively fight to remove the many roadblocks preventing better testing, more accurate diagnostics, and improved treatment options.
At the conference, I listened to researchers, doctors, advocates and patients speak of their experiences. As they spoke with heartfelt conviction, a Pandora's Box of emotions opened and spilled into the room.
First, there was pain. My heart goes out to kids suffering from persistent Lyme disease. Robbed of their youthful energy, they often can't lead the full lives they're entitled to. I met a mom whose son is Will's age, and learned how his illness prevents him from going to high school full-time. Once a prominent athlete, the teen now needs an inhaler to get through his day. A promising math student before he became ill, he sometimes can't remember now if he took a shower 10 minutes before.
Other parents told me similar stories. Of children too sick to enjoy memorable events, like homecoming dances, recitals, or championship games. Or kids tethered to their beds, too exhausted to play outside or with friends.
Second, there was frustration. Countless patients report that their Lyme disease went undiagnosed or misdiagnosed for years. Families sometimes feel abandoned by a medical community that is unprepared to deal with the ongoing Lyme epidemic or how to help chronic sufferers.
Opinion within the medical community is deeply divided regarding the best approach for treating Lyme disease, particularly persistent Lyme disease that isn't cured by short-term doses of antibiotics. One group maintains there's no convincing biological evidence for the existence of chronic Lyme infection, and that long-term antibiotic treatment of "chronic Lyme disease" is unproven and unwarranted. Opposing groups believe current Lyme testing is largely inaccurate and likely to miss patients with chronic and ongoing infection. This group feels that long term antibiotic treatment is needed for those patients with chronic symptoms.
Unfortunately, Lyme patients and their families are caught in the middle. Many parents confront a blizzard of conflicting literature on how to treat their children or where to go for help. Others are forced to travel endless hours or across states to find a doctor adequately trained to help them, or pay thousands of dollars for treatments that are rarely covered fully by insurance.
Fortunately, hope was still alive in the conference room. Lyme patients and their loved ones are fighters, if nothing else, and many had traveled long distances in the belief that PAL could provide help. With its guiding slogan of "Working Smarter Together Instead of Harder Alone," PAL provides a structure in which various organizations can collaborate more closely, form a unified message, identify common goals, and transform these goals into advocacy objectives for Lyme patients. Its highest priorities include greater education for patients and training for the medical community, the creation of a comprehensive database where those seeking help can find resources, advocacy of legislation designed to promote the interests and rights of patients, and funding for specialized research into diagnostics, prevention, and treatment. Most importantly, PAL's aim is to extend an open hand to everyone in the Lyme community, no matter what their perspective or background, to work together to find solutions to this cruel disease.
As the conference concluded, one of the panelists read lyrics from Phillip Phillips' hit song, "Gone, Gone, Gone." The words inspired those in attendance, and summed up the hope all felt that treatments might be found soon to ease the suffering of loved ones afflicted by Lyme.
When life leaves you high and dry
I'll be at your door tonight...
If you need help, if you need help.
Your hope dangling by a string
I'll share in your suffering
To make you well, to make you well.
For information about PAL, visit PALtad.org. To learn more about the detection, prevention, and treatment of Lyme and its associated diseases, consult your physician or your local health department, or visit the National Capital Lyme and Tick-Borne Disease Association, the Lyme Action Network, and the Children's Lyme Disease Network.
John McCormick and his sons William and Connor are the authors of "Dad, Tell Me A Story," How to Revive the Tradition of Storytelling with Your Children (Nicasio Press 2010). A second edition of their book is due for release in November 2013. For more information about family storytelling, visit the authors' website and blog.