Awareness and Advocacy
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 *****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
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
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 […]
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!
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
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.
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
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 […]
Site Construction In Progress ~ Please Stay Tuned!
I have been blogging about Lyme on a blogspot blog since my diagnosis in early 2013. Funny, it feels longer ago than that. I’ve realized lately that it would be valuable to have a location that could serve as more of a repository of Montana specific information for networking with patients and for sharing information […]
Read the Sign! ‘Nuff Said? Please Help
This is a preliminary post as this site develops. But this sign is worth a thousand words. It was present at the San Francisco IDSA Protest in October, 2013. You can read about that event on the ‘old blog’, where posts prior to Fall 2014 still live (Invisibly Lyme Montana on blogspot). More photos from […]
Retiring NIH Official Said He Would Not Miss “Lyme Loonies”
I may be the only true Lyme Loony in the state, as a Lyme disease infected biologist that monitors (and even occasionally captures) loons. Even then, this would depend on definition, as I am not the only biologist in Montana handling loons that has been infected. As a bit of background on the statement, a […]
Lime Lives in Montana ~ Help Doctors Help Patients!
Awareness and education specific to Montana is the primary purpose of this blog. But all Lyme patients benefit from education and outreach, and resources pertaining to states that don’t acknowledge Lyme tend to be pretty applicable in other states in the same boat. There’s no end to the stories of loss and pain brought about […]
Invisibly Lyme Montana 