Lyme Disease Testing and Diagnosis

Letters To Strangers 2016 ~ Montana Letter

Letters To Strangers 2016 ~ Montana Letter

This effort was discussed in my recent post about my trip to DC last week, and is described in further detail in a post from May of last year.  My letter was updated this year and some of the Montana patients active with Northern Rockies Lyme Disease Coalition efforts shared their photos to help further […]

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May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum

May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum

Each May, The Mayday Project hosts a rally outside of the Infectious Disease Society of America’s Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.  Patients travel from around the region […]

ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links

ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links

As most Lyme patients are aware, patients, physicians and medical practitioners seeking Lyme disease treatment information will only see one set of Lyme treatment guidelines referred to by the CDC.  The problematic guidelines they will find, authored by the Infectious Disease Society of America (IDSA), create obstacles to diagnosis and care that leave thousands of […]

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 […]

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 […]

Lyme in Oregon ~ Task Force Announces Draft Proposed Lyme Bill

Lyme in Oregon ~ Task Force Announces Draft Proposed Lyme Bill

A subcommittee of the Oregon Lyme Leaders (the Oregon Lyme Leaders Task Force) has been working toward draft legislation, drawing on months of collaboration and, for some or all members, years of preparation. The task force has used data from studies and surveys which were spearheaded by Oregon Lyme Disease Network over the last ten […]

Photos and Videos from Philadelphia Lyme Protest

In October, I posted links about the Philadelphia rally (before, during, and after), but I didn’t get around to posting many photos directly to this blog.  I did put links to some of the facebook photo albums (on the Invisibly Lyme Montana facebook page) in past posts, but here they are again, with a link to […]

CDC Youtube Video NEEDS Comments

My comment is posted following the video.  Please visit, give it a thumbs down and tell them what you think. My comment: I was told my Bell’s palsy was definitely a coincidence, and not related to the tick bite I’d gotten at work (with my federal employer) a month earlier. The reason that doctors insisted […]

Lyme Disease Articles on Hub Pages ~ First Two

Hub Pages (a writing website) kindly added a Lyme Disease Topic in their Health section.  One of the author’s whose work I’d been reading was in Philadelphia, but hadn’t put it together until after sharing some of her work on Facebook.  I have photos of both of us holding up/carrying the same sign.  We met […]

“Recent” Tick Science From 1909, Revised in 1949 (Then Apparently Forgotten)

Until at least 1949, only soft bodied ticks were considered to carry the spirochetes later learned to be associated with Lyme disease.  Later it was found that hard bodied ticks carried them also, but I’m at a loss as to how it was forgotten that they also were carried by soft bodied ticks. For the […]

Kristine’s Letter ~ 1,000 Letters Lyme Campaign

This is another patient’s letter from the 1,000 Letters Lyme Campaign, posted with permission. See also Heather’s Letter, My Letter, or visit the group on facebook (The 1,000 Letters Lyme Campaign) to request membership (you can participate without being on facebook).  More stories will be published over time, but these are just a few examples of […]

Heather’s Letter ~ Patient Stories Beyond Montana

The following is one of hundreds of letters written so far as part of an awareness campaign, published with the author’s permission. She has since contributed significantly to spreading of other ongoing Lyme campaigns through social media networking and is soon to embark on the next phase of her lyme journey by beginning care with […]

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, […]

Asking IDSA for Change ~ Video is Up: Lyme Disease IDWeek Protest Philadelphia 2014

Saturday’s protest included Lyme patients and loved ones from across the country, together to ask IDSA to revise guidelines for Lyme disease diagnosis, treatment, and care. Too many patients are misdiagnosed, their care delayed and lives destroyed. IDSA needs to incorporate current available science…

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 […]

1986 Lyme Persistence Study is Just One Example of Relevant Available Science

1986 Lyme Persistence Study is Just One Example of Relevant Available Science

This post is a lengthy introduction to a study published in 1986 that speaks directly to the issue of the persistence of Lyme infection. This is one of many studies addressing this question (Lymedisease.org has a useful pdf list of similar evidence) in the past three or more decades. Yet many high profile doctors and […]

Did You See a Rash? Most Lyme Patients Don’t

Studies show that most people who contract Lyme disease don’t see the tell-tale rash, increasing the need for doctors and the public to understand that not single symptom or test result determines the presence of Lyme.  Numbers are available, but the experiences of patients can help bring this point home.

Montanans Continue to Be Infected and Misdiagnosed

Montanans Continue to Be Infected and Misdiagnosed

My hope is that Montanans with Lyme disease will soon be able to receive care in Montana, no matter where they contracted it.  There will continue to be repetition of this point in posts here, as well as the issues surrounding that point. I also hope, however, that contractions in Montana will VERY soon be […]