2015 IDSA Guidelines Comment Period
- Recap and NEW TOOLS for IDSA Comment Period ~ Still not too late (EXTENDED THROUGH APRIL 24)
- Personal Overview of the IDSA ‘Public Comment’ Period ~ Part 1
- Link and Notes ~ Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey
- IDSA Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated)
- IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)
Action Needed
Why Montanans are calling Congress Jan. 26/27

We are spread-out, disenfranchised, devastated moms, dads, students, and children…..former participants in lives we now just watch go by.
- Three minutes, three calls, five people ~ Calling Congress Jan. 26/27
- Lyme Ribbons 2016 announced today: join, share, and stay tuned!
- San Diego Photos & Links: ID Week Lyme Disease Rally and Vigil October 2015
- Emails Requested ~ WA Lyme Bill Goes to Gov. Inslee For Signature (SB 5448)
- Letters To Strangers for Arlington MayDay Rally ~ Request Via Sheila Bush Can Also Benefit NorthernRockiesLyme.org
Awareness and Advocacy
Lyme Denialism and IDSA/CDC Misinformation Campaign ~ Recent Article Links

I’ve linked to articles in the past that I felt were particularly valuable for understanding or conveying why there is controversy surrounding Lyme disease diagnosis and treatment (not a small or simple topic). I’ll re-link to some of those here as well, but first, here are some very recent must reads to that end. They will […]
- Invisible Illness, Depression, and Speaking Out ~ Guest Post by Erika Morgan
- ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links
- Lyme Disease Challenge Week One Highlights and Appreciation Post (Celebrities & Media)
- Thanking Doc Ivan ~ Honorary Lyme Warrior
- Lyme Links ~ Essential Reading, Late May 2015
Lyme Activism
- Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar
- Lyme in Oregon ~ Task Force Announces Draft Proposed Lyme Bill
- It’s Not Too Late: Contact 49 Senators NOW to Pass Chronic Lyme Bill SB 5448 in WA
- Christopher’s Videos About the Lyme Disease Challenge (ChrisBitesLyme)
- Lyme Disease Challenge Starts March 1 ~ How to Get Ready
Patient Advocacy
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 […]
- Reminder/Request ~ Email WA Health Care Committee (Supporting Chronic Lyme Bill SB 5448)
- Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links
- Please Email Senators by Feb 20 ~ WA Proposed Lyme Bill S.B. 5448 Updates ~ Action Needed!
- Support French Lyme Patients ~ Send Support For Proposition N° 2291
- Washington Proposed S.B. 5448 Would Allow Long Term Antibiotic Treatment For Lyme Disease
More Articles

Blog Post Link ~ Liberation Through Lyme ~ Why American Ninja Warrior?
Why American Ninja Warrior? I wanted to do this for so many reasons. My original reason was because everyone told me I couldn’t. I wanted to show them all that I may have stumbled temporarily but that I was not staying down. I also wanted to bring attention to the plight of the Chronic Lyme […]

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 […]

DEAR CDC AND FDA ~ BY MELISSA VEHORN
Previously posted on Northern Rockies Lyme Disease Coalition. Posted with permission. This is not from the Northern Rockies, but clearly applicable to all of us. Thank you Melissa. Dear CDC and FDA, I don’t want to just go away. I want to live! I have a lot to offer this world. I am not just a […]
En Route to Arlington ~ A Few Photos (& A Video) From Past Rallies
I’ve been to two Lyme rallies in the roughly two years (of my five years with Lyme disease) that I’ve been diagnosed. Most of my in-person time with other Lyme patients has occurred within these trips. The rest have been chance meetings on planes or while traveling, or the two times I’ve met other patients […]

Questions, Logic, Ticks, and Lyme Funding Links from Northern Rockies Lyme Disease Coaltion
Following are three of the first articles published on the new Northern Rockies Lyme Disease Coalition website. We are gearing up to launch May 1. The only anticipated on-line fanfare will be photographic (see requests below the article links) and real-life will include presence at the Mayday Project’s IDSA Rallies in Arlington, VA. A CALL FOR INCREASED […]

Lyme Disease Challenge Updates ~ My Kids’ On-going Challenges
We challenged all of our families and friends and then some in smaller groups. For all of the fun and surprising responses we’ve gotten in the celebrity world (which was not a part of all this we were expecting) the friends and family side has been a bit slow. Very sweet responses, but only a […]
IDSA Comment Period & Lymedisease.org Survey Extended to April 24
You can still comment through April 24 on IDSA’s Draft Review Plan for current Lyme disease guidelines, and you can still respond to Lymedisease.org’s related survey. LYMEPOLICYWONK: Deadline extended; you can still comment on IDSA In March, the Infectious Diseases Society of America provided a 30-day window for the public to comment on its plan […]
Tweeting the Surgeon General for #NPHW ~ Kudos to Patients for Great Questions
It took more energy than I had to submit what I could for IDSA’s comment period on it’s final day. It was not an easy process, and I am still exhausted and recovering. So many things happened yesterday that the events will likely spill into multiple posts and will be things we remember for a […]
Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients
If you only share one article this month (or even this year) about Lyme disease, consider this one. I’ve describe multiple articles lately as ‘must read’ and I’ve got a great many more to catch up on. This one, however, is a must, must, must share and a must link-to in addition to being a must […]