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 Kupcha Leland has a family member with Lyme disease. She is co-leader of a Lyme patients’ support group, and is LymeDisease.org's VP for Education and Outreach.
The IDSA has devised a complex method for accepting public comments. You are supposed to specifically discuss their Project Plan, which includes more than 80 different questions. You are supposed to cite page and line numbers. You’re not supposed to recount your personal experiences with Lyme disease. Some patients have tried to comment and have given up in frustration part way through. Stay calm. Help is on the way. Continue reading →
The IDSA is accepting public comments about its Lyme guidelines review process through April 9. Rules for commenting require you to cite page and line numbers of the IDSA’s Project Plan. Molecular biologist/Lyme patient Julie Engle submitted the following comments. She invites you to use them to inspire your own comments to the IDSA. Continue reading →
Needy Meds is a resource for people who need help with the cost of medical care. The organization is a clearing house for Patient Assistance Programs (which can help you get free or reduced cost medications) drug discount cards, and more. Now they are offering HEALfundr, a way to help you “crowdfund” your medical bills. Continue reading →
A father regrets that he failed to believe his daughter really had Lyme disease. His message to others who have family members with Lyme: “Lyme disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real.” Continue reading →
More than 100 Lyme advocates held a “silent vigil” outside the New York Times building this week, joined by a group of silent dancers. They were protesting the media’s silence on Lyme disease and called for more and better coverage of the subject. Paula Kozinn took pictures at the event and shares the following observations. Continue reading →