Link and Notes ~ IDSA Guideline Comment Survey

The Comment Period ends April 9.  Just published ~ a survey opportunity via in order to submit comments to IDSA’s Lyme Guideline Review Project Plan Public Comment Period (ending April 9).  You can see my other posts and links on this topic listed here.  MayDay Project press release here (regarding comment period and meeting with IDSA […]


IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)

Foreward ~ I’m so behind on my own comments, and the deadline for the IDSA Public Comment period is so fast approaching, that multiple posts with relevant or even related content or links are going to published in a rough state, including things like un-formatted and un-annotated lists of links, just to get the information out […]

Email Massachusetts Senators (How and Why) Re H.D. 469 ~ Insurance Coverage for Lyme

Email Massachusetts Senators (How and Why) Re H.D. 469 ~ Insurance Coverage for Lyme

“There is currently a two-week window during which representatives can decide if they want to support the proposed bill known as: H.D. 469 An Act Relative to Lyme Disease Treatment Coverage, so we need to act quickly.”   The who, what and how of this issue was very well said and accounted for in a […]

Reminder & Last Chance: FDA Proposed Regulation Survey

Reminder & Last Chance: FDA Proposed Regulation Survey

Complete the survey immediately to have your answers included in the report, to be compiled this week. From’s facebook page:   More than 7500 people have taken our survey about Lyme testing. Their opinions will be included in a report to the FDA that we are compiling this week. Still time to make your […] Needs Survey Answers ~ Potential FDA Lyme Testing Regulation Changes Needs Survey Answers ~ Potential FDA Lyme Testing Regulation Changes

This did not take long to complete and is an opportunity to have your information, concerns, and situation represented. The more people that answer, the larger the sample size and the more meaningful and representative this information will be. As an example, their past survey regarding Lyme patient quality of life had over 5,000 respondents, […]

Why is Two-Tiered Lyme Disease Testing Still in Use? Check Out This POLICYWONK Article diagram, full size below Please take a moment to read the article I’m leading into here, and if your time is perhaps too short to read until we get there, please scroll directly down to the article link.  At the very least, you need to save this one for later.  (And/or share it with […]

Use of Best Available Current Science Would Lead to Appropriate Diagnosis and Care

There will be numerous posts on this topic, as it is the primary obstacle to proper care for Lyme patients.  Inadequate guidelines authored by IDSA and published/supported by CDC are causing misdiagnosis, delayed diagnosis, delayed care, inadequate care, and permanent disability or death for thousands and thousands of the millions of people who have contracted […]

Recent Article, 1,000 Letters Campaign, Lyme Bill, and Social Media Updates

There’s too much happening right now to write about very much of it.  I drove cross country last month to bring home our new car (a hail damaged car we drove back from Virginia, more here).  I’m fairly tired, having returned home just before the start of school.  It was a long trip due to […]