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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: Aug.10 deadline for IDSA comments; archive them, too

06
AUG
2019
idsa lyme guidelines comments
In June, the IDSA released a draft of its new Lyme disease treatment guidelines. The organization has asked for feedback from healthcare professionals as well as individuals such as “patients, care givers, patient organization members, advocates, and researchers.” In a previous... Read More »

TOUCHED BY LYME: IDSA’s insincere request for guidelines feedback

19
JUL
2019
idsa lyme guidelines
Last month, the IDSA released a long-awaited draft of its latest Lyme treatment guidelines. The accompanying announcement stated: “We are looking for feedback from not only physicians and healthcare professionals, but also individuals affected by Lyme disease, such as patients,... Read More »

TOUCHED BY LYME: Singing from the IDSA Lyme hymnal

28
JUN
2019
Imagine the following scenario: A woman finds a lump in her breast, gets diagnosed and treated for early breast cancer—and recovers beautifully. She goes on to live a long and healthy life. Here’s another scenario. A different woman develops breast cancer. She requires a long and... Read More »

TOUCHED BY LYME: Working group’s abrupt shift excludes Lyme patients    

12
JUN
2019
Tick-borne disease working group
Last week, on June 4, my eyes were glued to my computer screen. The occasion? The first meeting of the newly reconstituted federal Tick-Borne Disease Working Group (TBDWG). I’ll refer to this as the “2019 panel,” since that’s when its term began. You’ll recall that the first... Read More »

TOUCHED BY LYME: Working Group weirdness. What gives?

29
MAY
2019
17,000+signatures shapiro petition
Things are getting weird with the Tick-Borne Disease Working Group, which is scheduled to meet June 4 in Washington DC. As you’ll recall, the first two-year session of the group ended in December 2018, when the panel submitted its first report to Congress. Also in December, the... Read More »

TOUCHED BY LYME: Is Lyme disease a bioweapons experiment gone bad?

13
MAY
2019
Bitten: The Secret History of Lyme disease and biological weapons
The mainstream “origin story” of Lyme disease in the United States goes like this: In the 1970s, a mysterious ailment afflicted a group of people in and around Lyme, Connecticut. Eventually, scientists determined it was caused by a spirochete transmitted by the bite of an Ixodes... Read More »

TOUCHED BY LYME: LymeHope’s poll about mother-baby transmission

06
MAY
2019
Sue Burke Faber. pf LymeHope
The following is from Sue Faber, of LymeHope, Canada: Opinion Poll – Should you be told? Considering #lymedisease is the #1 vector-borne disease in North America, should the CDC and Public Health Agency of Canada issue a nation-wide bulletin to healthcare providers and the... Read More »

TOUCHED BY LYME: “Empowering the patient” in Maine, April 26

16
APR
2019
Dorothy Leland & Sandy Berenbaum
I’m getting ready to pack my bags and fly east. I’ll be speaking at “Empowering the Patient,” the 5th annual Lyme disease patient education conference, sponsored by Midcoast Lyme Disease Support and Education (MLDSE). It takes place all day in Augusta,... Read More »

TOUCHED BY LYME: Equal sequencing for West Coast ticks?

14
MAR
2019
PacBio genome contest
Ixodes scapularis is the kind of tick that carries Lyme disease (and other nasties) throughout much of the United States. However, its cousin, Ixodes pacificus, carries Lyme and co-infections in California and other parts of the west. Scientists sequenced the genome of I.... Read More »
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