We’ve recently opened an account on Instagram, in order to reach more patients and to reach a more diverse group of outdoor-active people.
VISIT US: @northernrockieslyme
Visibility is key in terms of awareness and outreach, but also in terms of geographic awareness.
We are situated in one of the most beautiful regions of the world, visited by people from around the world. One of the challenges patients face here is a lack of awareness of the true (and ever-expanding) distributions of Lyme disease, co-infections, and vectors among physicians and health agencies. But the lack of public awareness is part of how most of us became long term patients, instead of acute-onset-treated former (short term patients), which also poses a threat to visitors to this region that may not adequately consider tick born diseases if mysterious symptoms arise later.
We plan to continue to share our donated photos there, via #lymeoutside, #recycledlyme, and #biteoustide #photosweep efforts earlier this year. Tag us if you share photos you’d like us to share, too.
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.
Via Flo Gardipee (friend and fellow Wildlife Biologist with Lyme):
To all my friends & family, especially fellow biologists and park rangers, that spend time in the outdoors, please take precautions against tick bites. If you find a tick attached to you, remove it and save it to send in for testing, then get to a Dr right away for treatment with antibiotics. Ticks carry awful diseases such as Lyme, Bartonella, Babesia, Erlichia, Rocky Mtn spotted fever, and others.
Continue reading Tick PSA From Flo Gardipee ~ Wildlife Biologist with Lyme
“My daughter knows what I was like before I was sick,” she said with tears in her eyes. “My son doesn’t.”
By CHRIS PETERSON Hungry Horse News, May 27, 2015
In April 2010, Angela Daenzer was doing field work as a biologist for the Flathead National Forest when she startled a moose up the Middle Fork. She ducked off into the brush to avoid the angry animal, and while the moose encounter was a bit scary, there were worse things to come.
While hiding in the brush, Daenzer picked up a tick that bit her in the scalp. After a shower hours later, she found the tick and, disgusted by it, she pulled it out of her hair and threw it in the toilet.
Daenzer is convinced that tick gave her Lyme disease, or at the very least a disease very similar to it. Within a week, she became very ill. She got the chills and a sore throat and then what she and her doctors thought was an ear infection and then severe jaw pain.
The spatial display of non-spatial or improperly represented Lyme disease data is endangering patients and misleading doctors, with life-altering, expensive, debilitating, and potentially fatal consequences. This is especially true in regions (such as the Northern Rockies) where detection effort is reduced by the very biases and presuppositions most of these maps create.
CDC Lyme Surveillance Maps do not represent where cases are contracted but are used and/or interpreted as depicting the geographic distribution of the illness. The act of placing the dots on a map implies a geographic relationship with the information being displayed….if the relationship intended is supposed to be diagnosis locations only (which these dots currently represent), this should be the title of the map, rather than a fairly minor foot note.
Continue reading How CDC Lyme Disease Surveillance Maps Can Keep You Sick
May 24, 2015
My former (and now future) anti-tick precautions predate confirmation that ticks in western Canada carried the dreaded Borrelia bacteria. Instead, I grew up on tales of Rocky Mountain spotted fever, tick paralysis and other ailments shared by the seed-sized critters. It was only during my last few years in the mountains that Lyme disease loomed locally as a possibility.
I recently met a colleague from those mountain days. He mentioned that several people he had worked with in the 1980s now suffered from unaccounted-for neurological problems, including memory loss, chronic fatigue, muscle wasting and nerve issues.
He speculated about Lyme disease, but didn’t know. He said the acquaintances also didn’t know. Three decades have passed since they spent their summers roaming slopes, exploring valleys and camping in high-mountain passes.
Lyme disease might have existed in the Rockies back then, but remained undetected, undocumented and unknown. The bacteria can incubate for years in some people before causing illness. It’s also possible the illness occurred back then, but lack of awareness and difficulties with diagnosis — which continue today — left it undiagnosed.
– See more at: http://www.timescolonist.com/opinion/columnists/monique-keiran-tiny-ticks-a-good-reason-to-be-cautious-1.1944790#sthash.fuhfwAYX.dpuf
Related link and additional future links posted HERE.
As is often the case with Lyme-related questions in this region, this question has two important parts. One being which are we contracting within this geographic area, and the other being which are we contracting anywhere else that we travel to?
It’s challenging, but important, to distinguish the relative importance of each part of the question. As a patient in a time-sensitive quandary, it doesn’t matter where we contracted the illness as much as it matters that we can get timely and adequate diagnosis and care. But a current obstacle to both in this region, unfortunately, is the assumption that contracting it here is not possible, because it serves as a very large distraction and obstacle, regardless of where the exposure occurred.
The fact that you ‘can’t get it here’ is, sadly, often the only answer the patient receives–an untimely and unjustified end to what should be a lengthy discussion including a number of important questions.
This is a problem, of course, because we need medical care either way, and it needs to occur quickly to avoid the risk of permanent harm to the patient.
So the importance of proving we can contract Lyme in the Rockies is partly to overcome the wrong assumption that it is not a risk here, but also to overcome the biases among doctors that lessen the chances of due consideration of the likely cause of symptoms that present ‘just like Lyme disease’ but ‘can’t be Lyme disease’ (in most cases until the patient is able to travel out of state for a more informed opinion*, which is usually not happening fast enough to avoid long term consequences).
Continue reading Which Borrelia Strains Are We Contracting in the Rockies?
This graphic by Jill McAllister is extremely meaningful, as it provides information not currently available in terms of geographic distribution of Lyme and Lyme infected ticks.
Some of these locations, although across the border, are not really all the far from where I was bit in 2010 (various maps will be constructed over time). As you will read elsewhere on this site, distribution estimates and maps can be dangerously misleading if they do not depict associated levels of detection effort. As is seen time and time again (with North Dakota serving as a highly relevant example) the areas where we are not finding Lyme coincide with areas where we are not yet, or not adequately looking.