lyme disease

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 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

Dana’s (Video) Story ~ Sound Familiar?

“Courage isn’t having the strength to go on…it’s going on when you don’t have the strength.” This is the face of courage and hope! (Posted with permission…..scroll down AFTER you watch the video for something you will be very happy to know)

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 […]

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 […]

Gratitude Post ~ Everything I Wanted

Gratitude Post ~ Everything I Wanted

Before I contracted Lyme disease along the Middle Fork of the Flathead River in northwest Montana, I had everything I wanted.  I had pretty much reached all of the major goals I had set for myself and then some. Not only had I gotten into (and completed) graduate school, but I had done so under […]

The “Funny Parts” of My Bell’s Palsy Story

The “Funny Parts” of My Bell’s Palsy Story

There were a couple of moments during Bell’s palsy that were laughable even during the moment. It’s not a funny condition or a fun experience, but it helped my family and I to be able to laugh about it. We have plenty of pirate references, still, that make us laugh, four years later. If I […]

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 […]

Public Lands Day ~ Tick Removal Poster

In honor of Public Lands Day, I’m posting this useful diagram from Lyme Disease Association (LDA). Stay safe outside!

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.