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.
When school-age children and teens fall ill with Lyme disease, there are many additional complications besides obtaining proper medical care. (That’s hard enough….) Another big problem is what to do about school. When attending regular school becomes out of the question, parents find themselves scrambling for alternatives.
An off-hand question from a neighbor was eerily prophetic.
When I started my psychotherapy practice 22 years ago, specializing in adolescents and families, I recognized that, as a mother and as a psychotherapist, the core of my philosophy about children is that they need to feel safe and protected. Actually they need to be safe and protected. Four years later, when I started seeing children and adolescents with Lyme disease (one year after my own diagnosis), I realized that, in the world of Lyme, many patients do not feel safe and protected.
I recently received a phone call from a mom whose two teen-aged sons are terribly ill with Lyme and coinfections. In addition to all the medical and emotional issues her family is dealing with, she’s also concerned about schooling, since one of her sons is too sick even for homebound instruction.
There’s a scene in the Lyme documentary Under Our Skin, where somebody demonstrates how to “flag” for ticks. With his trusty long-haired dog trotting through the woods beside him, the man drags a big white cloth alongside the trail, and shows the camera how quickly and easily he picks up ticks. I’ve seen the movie several times, and whenever I get to that part, I silently scream at the guy, “What about the dog? Take care of the dog!”
I’m always looking for new ways to explain to people the complex world of Lyme disease. Not only is the illness itself biologically complex, able to manifest in countless different ways, but the history and politics of this particular disease muddy the picture even more.
Nurse practitioners had three opportunities to learn about Lyme disease at a recently concluded statewide conference in Sacramento:
Today I attended California's Lyme Disease Advisory Committee meeting in Sacramento. It's a group which advises the state health department on tick-borne disease issues. I made the following remarks to the committee during the public comment period.
The eyes of the Lyme community are riveted on this week’s tragic shooting death of an Illinois minister. The alleged shooter, 27-year-old Terry Sedlacek, has reportedly suffered from neurological Lyme disease for years, and some people believe his illness may have contributed to his violent behavior.
Sooner or later, anyone dealing with Lyme disease comes face to face with the high cost of prescription medicines. Even those who start out with insurance coverage for drugs may find their benefits run out before their need for them does; or the medicines they require aren’t covered on their plan; or the co-pay for certain drugs is inordinately high. Then there are patients who flat out have no insurance coverage for drugs at all.
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