Patient Advocacy

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 […]

Mission Confusion ~ CDC Article Link

“The agency has a severe case of mission confusion”.  Cross-posted on Invisibly Lyme Montana facebook page: Disease uncontrolled: Swift decline of the CDC Demonstrating that Lyme diagnosis and care is not the only area where the CDC is off kilt…. I speculate there are serious legal issues (in addition to the profound ethical/moral issues) with the […]

Lyme Ribbons 2015

Check out Lyme Ribbons 2015, newly launched awareness effort… https://www.facebook.com/events/1516674288613073/

Lyme Disease U.S. Postage Stamp Could Become Reality ~ Letters Needed

Lyme Disease U.S. Postage Stamp Could Become Reality ~ Letters Needed

The National Stamp Advisory Committee is willing to consider a Lyme Awareness Stamp if enough national interest is received.  You can help with the (updated) letter templates and options provided here, or via groups noted in this post. In November 2014, the leader of a support group called Lyme Disease Eugene Oregon, Deb (‘Dive GirlDeb’ on […]

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 […]

Debby Jo’s Letter ~ 1,000 Letters Campaign

This is another patient’s letter from the 1,000 Letters Lyme Campaign, posted with permission. See also Kristine’s Letter, Heather’s Letter, My Letter, the 1,000 Letters tab under ‘On-going Campaigns’ or find 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, […]

“Hope and Healing with Lyme Disease” ~ Riley’s Story (Video to Share)

“So whatever we’re in in the moment, sometimes it’s hard to imagine what’s coming….” ~Riley’s Mother, towards the end of the video

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 […]

Please Share Courtney’s Lyme Campaign ~ An 11-Year Old’s Class Project

Please Share Courtney’s Lyme Campaign ~ An 11-Year Old’s Class Project

I’m posting this for Courtney Prew, who is working on a class project raising awareness for Lyme disease for her Mom, Heather Prew, who is fighting chronic Lyme.  They’ve already touched a bunch of Lymies since starting this (and made a bunch of us cry!!!) ~ please help Courtney reach many more!  If you share […]

Long-Term Lyme: Were You Diagnosed With Lyme Disease First, or Something Else?

Long-Term Lyme: Were You Diagnosed With Lyme Disease First, or Something Else?

For millions of patients, like me and the dozens of other patients that shared varying degrees of their situations and stories here, still fighting Lyme Disease years after our initial infection, it is emotionally difficult to read or hear that our disease ‘does not exist’.  We need a larger percentage of doctors and the general public […]

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 […]

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 […]

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 […]