Touched by Lyme Blog by Dorothy Leland

Do You Have Lyme Disease?

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: Rehabilitating your Lyme-impaired vision

MAR

2022

Dr. William V. Padula is a pioneer in the field of how Lyme and other tick-borne diseases can affect your vision. He’s worked with patients from all over the world. Many of them had no idea that Lyme and TBDs were at the root of their deteriorating eyesight. Though treating the... Read More »

TOUCHED BY LYME: Repeating incorrect information doesn’t cause it to become correct

MAR

2022

In November 2021, a commentary promoting the Infectious Diseases Society of America’s newly updated Lyme disease guidelines was published in the American Journal of Medicine. (Unfortunately, those new guidelines have made it even harder for Lyme patients to get properly diagnosed... Read More »

TOUCHED BY LYME: Horowitz responds to the “old persistence debate”

MAR

2022

As noted in my most recent blog about the Tick-Borne Disease Working Group, a major sticking point has once more emerged between patient-aligned panelists and those aligned with the Infectious Diseases Society of America (IDSA). The same issue raised its head during the 2018 and... Read More »

TOUCHED BY LYME: Highs and lows at TBD Working Group meetings

MAR

2022

The federal Tick-Borne Disease Working Group’s recent online meetings gave reasons for Lyme advocates to be both optimistic and pessimistic about the panel’s activities in the year ahead. First, some optimism (1.) The nine advocates who gave public comment did an excellent job.... Read More »

TOUCHED BY LYME: Advocates from 45 states seek more Lyme funding

FEB

2022

More than 300 Lyme advocates from throughout the US took part in this week’s Virtual Lyme Fly-in. It was a chance for individuals to educate their Congressional representatives about the need for increased federal funding for Lyme and other tick-borne diseases. They also made... Read More »

TOUCHED BY LYME: “My Promise to Alex” –a memoir and a call to arms

FEB

2022

Alex Hudson grew up in Fresno, California. When she was 11 years old, she started complaining that her legs hurt. That was the beginning of Alex’s “mystery illness,” with waxing and waning symptoms that a parade of doctors couldn’t figure out. Sometimes her knees swelled up to... Read More »

TOUCHED BY LYME: When parents are unjustly accused of harming their sick child

FEB

2022

If your child has chronic Lyme disease, PANS/PANDAS, mast cell activation syndrome, POTS, or any number of other “medically complex conditions” – you have probably experienced being disbelieved by many people. You may be a decent, well-intentioned parent doing everything you can... Read More »

TOUCHED BY LYME: Register for Lyme Fly-in by February 10

FEB

2022

I’m often asked what’s the best way to get started as a Lyme advocate. And one of my answers is always “Sign up for the virtual Lyme Fly-in.” It’s an opportunity for you to speak directly with the offices of your elected representatives in Congress—via... Read More »

TOUCHED BY LYME: Who will represent YOUR state? Maybe you?

JAN

2022

More than 200 Lyme advocates from throughout the United States have already signed up for this year’s virtual Lyme Fly-in, scheduled for February 22-23. But there’s room for more, especially from the following underrepresented areas: Alaska, Alabama, Arkansas, Connecticut,... Read More »