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.
TOUCHED BY LYME: Ignoring psychiatric Lyme disease at our peril
Psychiatrist Robert Bransfield predicts the proposed IDSA guidelines could contribute to a “national and global epidemic of psychiatric illnesses, suicide, violence, substance abuse and developmental…
TOUCHED BY LYME: Lyme patient/physician coalition goes international
The Ad Hoc Patient and Physician Coalition—formed to protest the recent IDSA Lyme treatment guidelines—now has 52 member organizations from three countries. (Sept. 6 update:…
TOUCHED BY LYME: Finally, easier way to comment on IDSA guidelines
The Infectious Diseases Society of America (IDSA) has finally lowered yet another barrier to commenting on its new Lyme treatment guidelines. Let me put this…
TOUCHED BY LYME: IDSA guidelines deny Lyme diagnosis to most of the USA
Question: why does an organization that is supposedly set up to cure sick people—the Infectious Diseases Society of America—spend so much time and effort to…
TOUCHED BY LYME: IDSA extends comment period and allows downloads
Hours before its self-imposed deadline of August 10, the Infectious Diseases Society has given a brief reprieve to frustrated patients trying to comment on the…
TOUCHED BY LYME: New source of financial aid for Lyme patients
Back in 2011, a young Florida woman named Wendy Phillips traveled to Vermont with her now-husband to attend a wedding. At one point, they walked…
TOUCHED BY LYME: Aug.10 deadline for IDSA comments; archive them, too
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…
TOUCHED BY LYME: IDSA’s insincere request for guidelines feedback
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…
TOUCHED BY LYME: Singing from the IDSA Lyme hymnal
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…
TOUCHED BY LYME: Working group’s abrupt shift excludes Lyme patients
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…
TOUCHED BY LYME: Working Group weirdness. What gives?
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…
TOUCHED BY LYME: Is Lyme disease a bioweapons experiment gone bad?
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…