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).
“My family needs me, the world needs me. Please help if you can.”
It takes a lot of courage to ask for help, and it is not something the patients we have met or worked with do lightly or easily. For many, it takes months or years beyond the point of really needing help to finally be ready to ask for it…or, more likely, to no longer have a choice.
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.
Awareness evening to be held in Squamish next week
Kerri Currier / Squamish Chief, June 4, 2015
Squamish is a gorgeous natural playground to raise a family. However, the security I had in nature came to a halt upon learning the reality of Lyme disease treatment in B.C. I presented to the walk-in clinic with half a tick in my arm and was told not to worry about Lyme in the area. I’m now dealing with late-stage Lyme disease, its long term treatment and costs.
Health Canada has confirmed that the southern mainland and coast of British Columbia are endemic for Lyme disease. Many people will never notice they were bit by a tick and erythema migrans rash will show up in less than 50 per cent of people, according to the Canadian Lyme Disease Foundation (Canlyme).
The foundation says current testing in Canada misses 62 per cent of Lyme. It should be a clinical diagnosis and it is commonly misdiagnosed.
“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.
Global News covered Jan Cmela leading the Manitoba Lyme Disease Lyme Sucks Challenge in Winnipeg with Dan and Tanner of Ride for Lyme! You can also see all three in the following featured challenge, which we are particularly fond of (you’ll see why).
Technically this one is out of region, but symbolically, we’ve decided it’s in, since they were just in the region, and because it’s the first chance to cover a Lyme Sucks Challenge along side our featured Lyme Disease Challenges.
Per their facebook post that day:
Thanks to Global News Winnipeg for capturing the largest#lymesuckschallenge that we(and possibly anyone) have been a part of so far. Thanks for everything Winnipeg, those limes don’t get any sweeter eh?
June 1, 2015 – Ottawa, ON – Public Health Agency of Canada
Today, the Chief Public Health Officer of Canada Dr. Gregory Taylor launched a consultation process to support the development of a Federal Framework on Lyme Disease.
This consultation will solicit perspectives on Lyme disease from the medical community, governments, patients’ groups, as well as individual Canadians.
Specific feedback will be solicited on three key themes of the Federal Framework, as outlined in the Act:
National medical surveillance: to track incidence rates and the associated economic costs of Lyme disease in Canada.
Guidelines and best practices: the prevention, identification, treatment and management of Lyme disease and sharing of best practices throughout Canada.
Education and awareness: to develop standardized educational materials for use by Canadian public health providers to increase national awareness about the disease.
The Public Health Agency of Canada’s current Action Plan on Lyme Disease will serve as a platform for the development of the Federal Framework. It aims to mitigate the risks to Canadians posed by Lyme disease through three pillars: engagement, education and awareness; surveillance, prevention and control; and research and diagnosis.
Stakeholders and the public are invited to participate in the online consultation. Comments will be accepted until June 30, 2015.
A Conference will be held with invited stakeholders later this year where the input received through the consultation will inform the development of the Framework.
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.