One of many Lyme-related, broad scale commonalities in the Northern Rockies is that if and when Lyme disease is reported on, it is most often accompanied by the declaimer that Lyme is not present or not a concern in the region. It is often stated that people should be careful of other tick born illnesses, or careful of Lyme when they travel.
This commonality stems from a larger, more dangerous, and more problematic commonality: the assertion by states, provinces, and relevant agencies that Lyme disease is not present. This remains the case despite positive cases contracted in the region. Even when these cases are followed up with phone calls from health agencies, patients are consistently reporting that their cases still somehow do not make it onto the map, and their areas remain unacknowledged (view our recent post regarding the Bitterroot study for a recent exception).
Continue reading Spring 2015 Northern Rockies ‘tick season’ media coverage ~ patients still note room for improvement
Many Montanans know that contracting Lyme in Montana is rare but possible. Either through knowledge of pathogens and vectors, disease ecology, or personal experience with Lyme disease.
I am quite ‘biased’ on the matter, having contracted Lyme disease. Multiple patients, some of whom have shared their stories here (with multiple more ready and willing to share with media to raise awareness) share this bias and this experience.
This study examines self reported cases — a beginning step patients feel should be taken by state health agencies immediately.
Concluding their study, the team recommends: 1. establishing a statewide tick surveillance program to discover what ticks reside in Montana and what pathological agents they carry; 2. assuring that state-of-the-art two tier testing for Lyme disease is available and that healthcare providers know of it; 3. encouraging health-care providers to include Lyme disease in the differential diagnosis of the patient with symptoms of the disorder; and 4. participation in meaningful and related research.
“Dealing with a life altering chronic pain and illness is like grieving for the death of someone close to you, except you are grieving for yourself and what you are unable to do now.”
Kate is about to embark on a very big and very far away chapter in her recovery. Hers will be an international migration for care, and across the Rockies and beyond there are a touching number of Lyme patients pulling for her, excited and hopeful for this chapter to bring her the most that it possibly can toward her recovery.
Kate Lamport, Helena MT
Continue reading Kate’s Story ~ And a new and far away chapter in a local patient’s recovery
Anyone, Anywhere: The Northern Rockies Lyme Disease Coalition needs your Lyme pictures!
Bite Outside Photos: Take a selfie or photo outside with or biting a lime. If you already have an outside Lyme disease challenge photo, send that. Tag with #biteoutside
Lyme Outside Photos: Past or present photos of you enjoying the outdoors. Please note where you are or where you are from in the picture. Tag with #lymeoutside
Recycled Lyme Photos: Send photos you’ve created through other campaigns or other photos, images, or art you’ve created that are meaningful to you. Tag with #RecycledLymePhotos
*Send your pictures to: firstname.lastname@example.org or post on our FB page: http://goo.gl/czH1cQ
Continue reading Photo Sweep 2015 ~ New & Used Photos ~ Please Help Us & Other Groups SHOW Our Story
To answer the questions that matter most, we need to identify them and we need to frame them properly. Many of the most critical questions in regards to Lyme disease diagnosis and treatment in our region are not being asked (at least not when, where, or by whom they need to be), are not well framed, are based on poor assumptions, or are all of the above.
In cases where there is information patients don’t have access to, or haven’t found, that would answer these questions, the questions are still essential in seeking it, finding it, or asking for it, as well as for assessing it.
Ticks, it turns out, are a prime example of unasked questions impacting and inhibiting patient care (directly and indirectly, as there are additional paramount influences further discussed in later articles).
Continue reading Tick Distributions Example ~ Asking the Right Questions
Please help us get Lyme disease patients in the Norther Rockies #onthemap! This is the first of a few requests in an effort to gain some preliminary information, increase our networking, seek partners, and keep finding each other as we gear up to ‘launch’ May 1.
Please look around and start to get to know us as we build our site (and let us know if you’d like to help in some way now or in the future).
Request #1 ~ Here’s what we need most so far!
Continue reading Request 1 ~ Locations and Help ~ #OnTheMap #NorthernRockies #LymeLivesHere
We are so grateful to (Candadian Lyme-patient) Artist Brandi Lee Ethier for allowing us to use her extremely inspiring, still-in-progress painting. Thank you!
We are gearing up to launch May 1, but we will need help from our Lyme community. By this Wednesday, April 15, we will be ready to start asking some of our biggest pre-launch questions.
One of our biggest needs will be your location and some basic information.
This will help build an initial map for educational and general purposes, but especially for increasing VISIBILITY and AWARENESS for our region, beginning with the upcoming MayDay Project Rally at IDSA Headquarters in Arlington, VA, April 29 and May1, 2015.
We will have an outreach/information form ready Wednesday so we can begin to collect information for the map and to start to answer some of our basic but yet-unanswered state and regional questions (a much larger, long-term undertaking).
Starting Now you can share the Facebook page and the soon-to-come event page to help us reach as many people as we can within and beyond our region, and please be sure to help us with our requests as we get ready for our May 1, 2015 Launch!
A Multi-Purpose Pre-Request, Via Invisibly Lyme Montana & Others:
Multiple requests in the coming weeks, as with the one above, will offer mutual benefit to this group and to on-going or additional new campaigns or efforts by other groups, so stay tuned….