Touched By Lyme
By Dorothy Kupcha Leland
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.
Final TBD Working Group report reflects patient contributions
The third and final report of the Tick-Borne Disease Working Group has been submitted to Congress. You can access it here. It’s the culmination of…
“Fierce” Lyme advocates sponsor Utah showing of The Quiet Epidemic
Josh and Ethan are two young men from Utah who share a special bond. Not only have they been good friends since they were little…
Advocates zoom with Congress for more Lyme funding
This week, about 350 Lyme advocates from 45 states donned their special green neck scarves and contacted Congress through Zoom. Members of the group held…
National Academies take on thorny issue of “long-haul” diseases
The National Academies of Sciences, Engineering, and Medicine (known collectively as NASEM) are private, nonprofit institutions that study complex challenges facing our country and give…
“Ehrlichia, Rhapsody in Discomfort #6″ wins Global Music Award
A piece of music representing what it feels like to experience Lyme disease and co-infections has won an international award. Classical violinist and composer Dan…
‘Gaslighting’ is Merriam-Webster’s 2022 word of the year
“Gaslighting” was the most looked-up word in Merriam-Webster’s online dictionary this year. And I daresay, many of those looker-uppers may have been people with Lyme…
Broadway star’s secret battle with neurological Lyme disease
Ashley Loren, who stars in “Moulin Rouge! The Musical” on Broadway, says she has suffered from neurological Lyme disease since she was in grammar school….
What this boy learned young about his mom’s chronic Lyme disease
It can be tough to be a kid when your mom has chronic Lyme disease. Jessica Devine and her 14 year old son Parker know…
Spoken word poetry puts different spin on “PTLDS”
“PTLDS” is a despised acronym in the Lyme community. Officially, it stands for “post-treatment Lyme disease syndrome.” For many patients, them’s fightin’ words. The term…
After 6 years of TBDWG, are we still stuck with IDSA guidelines?
When I was watching last week’s online Tick-Borne Disease Working Group meetings, I got a sick feeling in my stomach. It came at the end…
Some thoughts about 30 years of misdiagnosed Lyme disease
Kat Garza is what’s known in the industry as a “mature model”–pretty much any model over the age of 30. One look at her photos…
“Hijacked by Lyme”: Quebec coroner calls for inquiry into suicide
The death by suicide of a young woman battling Lyme disease garnered international attention recently after her father—a prominent Canadian businessman—shared the news on LinkedIn….