This blog has several goals. First, to explore the personal side of Lyme disease and how it affects individuals and families. Second, to highlight useful information for people seeking answers about this complicated illness. Third, to help foster a sense of unity and shared purpose among the many diverse members of the Lyme community. Dorothy, who serves as President of LymeDisease.org, has a family member with Lyme disease. She is co-author of a book called When Your Child Has Lyme Disease: A Parent’s Survival Guide.
The task for an author who wants to write a book about Lyme disease is daunting. This is due not only to the complex illness itself, which can manifest in literally hundreds of ways, but to the complicated history and politics which keep Lyme disease in a separate category from other medical conditions.
A few years back, Tami Duncan was a mother of an autistic son, searching for ways to help her child. As it happened, she also had ill-defined health problems of her own. Like many of us who couldn’t find answers elsewhere, she turned to the internet. Early on, she connected with other moms of autistic kids…discovered many of those kids were testing positive for Lyme disease…found out she and her son both had Lyme …and ended up starting the Lyme-Induced Autism Foundation (LIA). Don’t let the word “autism” turn you away if that isn’t your family’s specific issue. LIA has a wealth of information for anyone dealing with the complexities of chronic illness, especially tick-borne infections.
The photo to the left is an engorged Ixodes Pacificus, otherwise known as the western black-legged tick, notorious carrier of Lyme disease, sitting on snow one November day in Shingletown, California. The picture was snapped by professional photographer Michelle Mahood, moments after plucking the insect from her dog, who had been frolicking in the snow. It’s Michelle’s answer to all those medical professionals who perpetuate the delusion that ticks are never a problem in winter.
As a Lyme support group leader, the first piece of advice I give anyone dealing with tick-borne infections is to join at least one on-line support group, such as CaliforniaLyme. The reason? In the topsy-turvy world of Lyme disease, people who have traveled this difficult road before you are a priceless resource.
A mom I know whose whole family has struggled with Lyme disease for over 20 years called me after my recent posting about teenagers with Lyme and said: “More than anything, teenagers with Lyme need you to believe them. So many people—doctors, teachers, school friends—don’t believe these kids are really sick. You have to stay squarely in their corner. You may be the only one.”
Dealing with Lyme disease and other tick-borne infections is a miserable ordeal at any age, but it offers unique challenges when the person going through it is a teenager.
A steady stream of responses has flowed into my email box regarding my previous blog post “No Lyme in (your zip code here).” What follows are quotes from your different emails:
In the chaotic early days of my daughter’s illness, when we trying to make sense of her bizarre symptoms and the equally bizarre reactions we were getting from the medical establishment, I didn’t want to read about the history and controversy surrounding Lyme disease. I just wanted somebody to figure out what was wrong with her and fix it.
When my family and I needed to quickly come up to speed about Lyme disease several years ago, I looked for a book that would take me by the hand and explain all the complex stuff I needed to know. I never found one at the time. I wish I’d had a copy of The Lyme Disease Solution, by Kenneth Singleton, MD, MPH. (Brown Books, 2008). Dr. Singleton himself suffered from undiagnosed Lyme disease for eight years. Now, having recovered his own health, he works as a Lyme disease specialist in Maryland.
Several years ago when my daughter first came down with mysterious disabling symptoms that no doctor could diagnose, my neighbor said, “Sounds like it could be Lyme disease.” I knew next to nothing about Lyme, but added it to my list of questions for the doctor.
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