Tick Distributions Example ~ Asking the Right Questions

Posted on by Angela D

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

Estimating Distribution, Abundance, and Medical-Care-Migration Patterns Of Northern Rockies Lyme Disease Patients?

Posted on by Angela D

Not really.  At least, not just yet.

But we are building a preliminary map, for which we currently need your assistance.  If you have lived with or may have contracted Lyme disease in the Northern Rockies (MT, WY, ID, ND, SD, BC, ALBERTA, SASKATCHEWAN) please share the location here. (You can find other ways to help us in the short term, including awareness opportunities here and via other groups, by watching for related pages and requests, including our first request linked here.)

We are certainly wondering about those things in the title (though we are not implying we can actually tackle these questions here). The actual purpose of this article is illustrate that we have reasonable expectations regarding the value vs. limitations of the information our initial map will provide and the importance of asking and answering the right questions over time.

Continue reading Estimating Distribution, Abundance, and Medical-Care-Migration Patterns Of Northern Rockies Lyme Disease Patients?

Request 1 ~ Locations and Help ~ #OnTheMap #NorthernRockies #LymeLivesHere

Posted on by Angela D

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 Need Your Help, Starting April 15! #OnTheMap #LymeLivesHere #NorthernRockiesLyme

Posted on by Angela D

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:

Letters To Strangers for Arlington MayDay Rally ~ Request Via Sheila Bush Can Also Benefit NorthernRockiesLyme.org

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….

You are Invited ~ Share this site and Our 1st Set of Action Items Beginning April 15

Posted on by Angela D

In a few days, you will be able to look back and know that you were one of the first ever to view this site and that you somehow found it or had it shared with you before the rest of the world.

In the mean time, please have a look around, particularly the About Page and Draft Goals & Needs Pages.

Please share any input, feedback, or suggestions here or via soon-to-come comment/contact forms (and further contact options).  In the short-term, contact can also be made via Invisibly Lyme Montana (facebook page, website, or twitter).

If you are interested in partnership opportunities (support, collaboration, other), becoming a member or supporter (as an individual, group, organization, or business), or becoming more involved immediately, consider the following options and use the following links:

  • Partnership/Support Opportunities, see Supporters ~ Stay Tuned
  • To help with ideas, fine tuning, and testing, message me via Invisibly Lyme Montana on facebook regarding a private/closed planning group on facebook (fb link above)
  • Preview initial calls to action and action items, see Short Term Needs
    • stories, accounts
    • basic information (tools/requests coming soon)

If you are a member of the media and would like to know more before April 15 please contact Invisibly Lyme Montana and/or Angela Daenzer (preferably in multiple locations to avoid spam filter mishaps).  We intend to reach out later in the month, but would welcome your coverage of certain key points and requests sooner if you are interested.

IDSA Comment Period Links & Resources (Ends April 9)

Posted on by Angela D

On March 9, 2015, the Infectious Disease Society of America (IDSA) announced a 30 day comment period on a Draft Plan to review the Lyme disease guidelines.

Previous posts on Invisibly Lyme Montana have covered the basics of the process, resources from trusted Patient Advocacy groups, and numerous links.  Posts were hastily constructed, due to the time sensitive nature of the issues, evolving nature of resources, and generally chaotic but excitingly productive nature of the Lyme community at the present time.  If anything, this illustrates the urgency of the need to comment.

These posts can all be found via THIS LINK.

Resources there include The MayDay Project’s press release (regarding their meeting with IDSA’s President) and webinar resources, a survey from Lymedisease.org (allowing an option for contributing to a community-representative comment they will submit during the comment period) and additional articles and instructions, as well as references and additional resources.

Launching May 1, 2015

Posted on by Angela D

This endeavor will launch May 1, 2015 (while resources are still under construction) in order to be involved in events, actions, and activities of larger partner groups currently underway and those that will occur at the national level in May (Lyme Awareness Month).

Please stay tuned, and please visit the short-term projects pages as they evolve, for ways to help make our regional presence and numbers known in Arlington, VA on April 29-May 1 (watch for posts or visit The MayDay Project’s website for more in formation for the 2015 Protest at IDSA’s headquarters).

From the About Page, so far:

Brand new, planning phase endeavor to provide opportunities for collaborative planning, networking, and regional representation and visibility at upcoming events. We know we need to show our collective presence and have begun to work together and partner for other campaigns.  Mission building and goal setting will be adaptive/iterative/ongoing as membership grows.  But this will provide short term opportunities for visibility/representation and membership while we get up and running.  *May be a good time to ask for assistance from larger groups we are already collaborating with.