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Touched By Lyme

an image of Dorothy Kupcha Leland

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 Vice-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.

TOUCHED BY LYME: TBD Working Group and FACA’s open meeting rules

10
JUL
2020
Drs. David Walker & Eugene Shapiro
In a grand stroke of irony, Wednesday’s online meeting of the Tick-Borne Disease Working Group began with a recitation of the panel’s “core values.” These supposedly include “respect, honesty and integrity.” However, those qualities were in short supply that day. The meeting... Read More »

TOUCHED BY LYME: New Hampshire Lyme insurance bill heads to governor

01
JUL
2020
wendy thomas, New Hampshire
Wendy Thomas and five of her six adult children have all been diagnosed with Lyme disease and co-infections. So, she knows a thing or two about what families go through to obtain proper treatment for tick-borne illness. And about how difficult it can be to get insurance companies... Read More »

TOUCHED BY LYME: How medical education misses the (Lyme) bull’s-eye

26
JUN
2020
When I first started writing this blog more than a decade ago, I remember being contacted early on by a reader with a question. She said she was a Black woman with symptoms that sounded a lot like Lyme disease. But her doctor told her that Black people couldn’t even get Lyme... Read More »

TOUCHED BY LYME: Community grieves loss of Dr. Neil Spector

19
JUN
2020
Dr. Neil Spector
Dr. Neil Spector died Sunday, June 14. By Monday, the news was spreading like wildfire through the Lyme community. Tributes poured in from literally around the globe. Neil Spector held a unique place in the Lyme world. I first encountered him in 2015, when I read his then-newly... Read More »

TOUCHED BY LYME: “Like the devil was inside me,” says comedian of Lyme disease

12
JUN
2020
Tori Piskin
Back when she was in college, actor and comedian Tori Piskin started having blurry vision and debilitating fatigue. She says it felt like she was living in the movie The Exorcist. “Like the devil was inside of me—something was off.” Eventually, she was diagnosed and treated for... Read More »

TOUCHED BY LYME: Treating psychiatric Lyme symptoms with disulfiram

01
JUN
2020
Dr. Robert Bransfield, Psychiatric Lyme disease
Kristina Bauer, a Lyme advocate, patient and mother of four children with congenital Lyme disease, is the founder of the Texas Lyme Alliance. After she became interested in the use of disulfiram for treating Lyme disease, she started a Facebook support group called Disulfiram... Read More »

TOUCHED BY LYME: The healing power of “realistic, practical hope”

26
MAY
2020
oren jay sofer
A couple of years ago, on the recommendation of a friend, I started listening to the Ten Percent Happier podcast. Soon after, I started following the Ten Percent Happier app on my phone. The general topic is mindfulness meditation. This is basically a mental technique for staying... Read More »

TOUCHED BY LYME: Coronavirus in NYC, both with and without Lyme disease

21
MAY
2020
covid
I get a lot of questions from readers asking how COVID-19 might affect people who also have Lyme disease. A recent blog recounted how one woman had “COVID Toes” and other symptoms. In the following, a Lyme patient describes very different symptoms. The author is a... Read More »

TOUCHED BY LYME: Sharing Alex’s Lyme legacy with 1000s of Girl Scouts

20
MAY
2020
Project Tick
Jody Hudson has lived through a parent’s worst nightmare. Starting at age 12, her daughter Alex suffered greatly from unrecognized Lyme disease and mast cell activation syndrome. They went from doctor to doctor, endured many tests, and for 10 years, got no real answers. By the... Read More »
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