lyme news

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part Two)

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part Two)

Misinformation about Lyme disease dangerously skews public perceptions of patients, in addition to perceptions of the disease, further alienating thousands of patients from families, friends and careers, as well as appropriate healthcare.

Lyme Ribbons 2016 announced today: join, share, and stay tuned!

Lyme Ribbons 2016 announced today: join, share, and stay tuned!

Today the organizers of Lyme Ribbons 2015 officially announced Lyme Ribbons 2016. You can read the full announcement The Lyme Wire or by joining the brand new Lyme Ribbons 2016 Facebook group.

Lyme Links ~ Essential Reading, Late May 2015

Lyme Links ~ Essential Reading, Late May 2015

There were so many not-to-be-missed articles this month that they ALL became easy to miss and easy to lose track of.  Which I have done, prior to finding the time to read or share most of them. This is due in large part to May being Lyme Disease Awareness month, and to the ongoing traction […]

PostStar Link ~ Must Read Commentary by Holly Ahern

PostStar Link ~ Must Read Commentary by Holly Ahern

Commentary: Diagnosis, treatment of Lyme Disease controversial May 24, 2015 As an advocacy organization, Lyme Action Network (of which I am co-founder) does not “support” medical guidelines. LAN does, however, support the rights of patients to be advised that there is more than one evidence-based, medically recognized standard of care for Lyme disease, and that […]

Link to Press Release ~ Outcome of The Mayday Project and IDSA President Calderwood’s Meeting

Link to Press Release ~ Outcome of The Mayday Project and IDSA President Calderwood’s Meeting

Just Released Lyme Patient Advocates Meet with IDSA President, Discuss Concerns About Guidelines Review Process ARLINGTON, VA, Tuesday, March 24—Representatives from The Mayday Project Lyme patient advocacy group met with Infectious Diseases Society of America (IDSA) President, Dr. Stephen Calderwood, on Friday, March 20, to discuss concerns about the IDSA’s guidelines for diagnosis and treatment […]

Please Email Senators by Feb 20 ~  WA Proposed Lyme Bill S.B. 5448 Updates ~ Action Needed!

Please Email Senators by Feb 20 ~ WA Proposed Lyme Bill S.B. 5448 Updates ~ Action Needed!

Please write Washington state Senators immediately to show your support! This post forwards the requests of Washington Lyme activists and organizers (with clear and specific steps to take), including the Lyme Disease Seattle WA Support Group, Ticked Off On Lyme WA, and Dan Boeholt (Bill coauthor). Pre-Notes For Residents/Non-Residents: Residents: The links below make it […]

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part One)

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part One)

This is part one (focusing on the science) of a response to a recent article which questioned Real Housewives star Yolanda Foster’s Chronic Lyme Disease diagnosis and claimed that there is “no good evidence” that Chronic Lyme Disease exists. The author’s inflammatory title, “Real Housewife, Fake Disease” is fairly ironic, given that the doctor writes under a fake […]

Washington Proposed S.B. 5448 Would Allow Long Term Antibiotic Treatment For Lyme Disease

Washington Proposed S.B. 5448 Would Allow Long Term Antibiotic Treatment For Lyme Disease

Proposed legislation in Washington, S.B. 5448, was read during regular session on January 21, 2015, and referred to the Senate Health Care Committee, scheduled for hearing on February 2.  The bill would allow specified practioners to treat patients dianosed with Lyme Disease using long term antibiotics, “for a therapeutic purpose that eliminates infections or controls the […]

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 […]

Deer Ticks Confirmed in North Dakota Carry Lyme Disease and Important Implications for ‘Non-Lyme’ States

Deer Ticks Confirmed in North Dakota Carry Lyme Disease and Important Implications for ‘Non-Lyme’ States

Recent findings published in the Journal of Medical Entomology carry critically important implications for Lyme Disease detection in Montana and other states currently not considered Lyme endemic. Although North Dakota was considered to be outside the range of deer ticks (Ixodes scapularis), researchers sampled nine locations in North Dakota and found deer ticks present at six of them, including […]

Reminder & Last Chance: Lymedisease.org FDA Proposed Regulation Survey

Reminder & Last Chance: Lymedisease.org FDA Proposed Regulation Survey

Complete the survey immediately to have your answers included in the report, to be compiled this week. From Lymedisease.org’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 […]

2015 IDSA Headquarters MayDay Protest: Reasons 1-5 to Read and SHARE

Visit the Event Page on Facebook, linked below, for event details, and read and share reasons 1-4 to participate in and promote this event. “We need to let the IDSA know WE WILL NOT STOP UNTIL THEY TAKE ACTION! THE IDSA NEEDS TO REVISE THE LYME GUIDELINES AND STOP REJECTING THE SCIENCE THAT PROVES WE […]

Lymedisease.org Needs Survey Answers ~ Potential FDA Lyme Testing Regulation Changes

Lymedisease.org 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, […]

Philadelphia Lyme Protest After-links: Follow ups, Photos, Videos, News, Contacts

Post-protest link lists SO FAR for the Oct. 10 & 11, 2014, IDSA IDWeek Lyme Candlelight Vigil and Protest organized by The Mayday Project .  Links for photos, albums, videos, news articles and coverage found so far, groups and pages present/involved, contact lists to save, and follow up links (who to thank, tweet, etc.).  This […]

How to Help From Home ~ Philadelphia Candlelight Vigil and IDSA Protest

How to Help From Home ~ Philadelphia Candlelight Vigil and IDSA Protest

How to Help From Home ~ Philadelphia Candlelight Vigil and IDSA Protest *****October 11 post-event update—call fox and ABC—-see more at bottom of post****** Also see following blog post with Post-Protest links I’ll be adding links to this if I can from the train, otherwise google the references to find the lists!!!

En Route to Philadelphia ~ Lyme Activists Target IDSA Conference

En Route to Philadelphia ~ Lyme Activists Target IDSA Conference

I will be joining Lyme disease patients from around the country tomorrow (Friday, Oct. 10) in Philadelphia for a candle light vigil outside the IDWeek Medical Conference and a peaceful protest outside the conference the following day (Saturday, Oct. 11, my husband’s 40th birthday).  Per the MayDay Project’s event Facebook page: We are calling on […]

Success Story ~ Formerly House-Bound Lymie Nathan DeJong Completes Obstacle Race

Just two years ago, Nathan DeJong was confined to his house by Lyme disease. He’s since gone through three pairs of shoes in one year and completed an obstacle race, inspiring hundreds of patients. I am re-posting the contents a Facebook group post here, with permission, because even within the first hour or two posted […]

Proposed Lyme Legislation H.R. 4701 (Gibson Bill) Links and Updates: Post-House, Pre-Senate

Proposed Lyme Legislation H.R. 4701 (Gibson Bill) Links and Updates: Post-House, Pre-Senate

Last week H.R. 4701 (The Tick-borne Disease Research Transparency and Accountability Act of 2014) passed the house.  The bill is also known as the Gibson Bill, after the bill’s author, New York Senator Chris Gibson. Per Lyme disease.org: H.R. 4701 forms an interagency working group consisting of federal agencies and non-federal partners, including experienced Lyme physicians […]

Hopefully Travelling to New York Lyme Vigil Sept. 17

Pending a reasonably priced hotel and reasonably energy levels this week, I may be headed to participate in my second Lyme disease Awareness/Activism/Advocacy event later this month.

Why is Two-Tiered Lyme Disease Testing Still in Use? Check Out This POLICYWONK Article

 Lymdisease.org 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 […]