The Fight Above the 49th Parallel: The CanLyme site deals with the issues of Lyme disease, especially pertaining to Canada, although the information is also true in the USA. You can learn about the symptoms, where new outbreaks are being found, the tricks of diagnosis, additional material, and there is also a live discussion where you can dish the dirt and learn from others. You can also read stories of Lyme sufferers and add your own to the growing list.
The Truth: This is is where the correct information is at. The International Lyme And Associated Diseases Society is dedicated to educating people about Lyme, and gives very up-to-date information about research being done, Lyme in the news and the foundation its self. Their information is accurate, concise, well written and gives both an in-depth look at the disease and a overview.
Lyme Project: A very current source for updates about the Lyme disease fight! Includes great resources concerning research, detailed facts, instances of Lyme in the media, and key information for doctors!
Blood Tests: Think you or a loved one might have Lyme? Although diagnosis based on symptoms is sufficient for most LLD (Lyme-literate doctors), accurate testing can be useful to confirm (or to assuage your doubts!!). The 2 tiered testing used in Canada (called the ELISA and Western-blot tests) are highly inaccurate, and physician rely heavily on them. Labs doing much more sensitive lab-tests for Lyme and co-infections are IGENEX’s labs (West Coast) and Clongen labs (East Coast). If you are in serious finicial straights, and desperately need testing, try filling out the application on the Lyme Test Access Program or LymeTAP for short. They are able to offer serious money back on IGENEX testing due to generous donations by that company.
Under Our Skin:
The Movie: Andy Abrams’ new documentary, Under Our Skin, explores the struggles of Lyme victims and speaks with the urgency and helplessness that all Lyme victims feel. It looks at not only the symptoms and lives of people fighting it, but asks the doctors on both sides of the story ‘why?’. It thoroughly brings to light the heart of the issue, from Lyme’s humble origins (in the USA) in small-town Connecticut, to the ridiculous politics surrounding the disease and the doctors of CDC, who are making our lives and treatment a nightmare to have. The resounding question at the end of the movie is ‘how can they, and dare they, ignore us?’. Fantastic. Hard-hitting. Please check it out.
Under the Eightball:
The Conspiracy: Writer, Director and Producer Timothy Grey’s film “Under the Eightball” is stirring up a lot of questions without easy answers. The premise of the film is about the creation of a metal dome building, at Fort Dietrich, Maryland in 1951, Maryland,where germ weapons were being created, and eventually “creating mists of infectious aerosols” to test on animals, and people. The story covers victims of Lyme disease, and their struggles. More than enough for you to think on.
Out of the Wild:
CTV W5: A Canadian investigative report about the controversies of Lyme disease, with a special look at 3 Canadians across the nation living with Lyme disease. David Leggett was a high school principle before a walk in the woods changed his life forever. Ed Sperling has come 360 and is now back at school. I am also featured in the documentary, looking at a my trip to Seattle to visit a doctor.
Video Feeds: PvTnetTv’s Channel:
A fellow Lymie from Vancouver, BC who collects the various news articles and YouTube videos and hosts them all on one channel! Check out what has been in the news!
Local Support Groups & Online Forums->
Victoria Lyme Aware:
Victoria Lyme Aware: A local Lyme group here in Victoria. Regretfully, a growing network.
The Movement: The ‘California Lyme Disease Association‘s’ site. You can investigate information on Lyme disease and news of the rising activism. Also discover the ‘Lyme Times‘, put out several times a year, which asks hard questions and brings the newest research to light.
CanLyme Forum: Have a question? Want to compare treatment notes? Or ask about people’s experiences with certain doctors or medications? The CanLyme Forum is the place to be.
Lyme Connect: Meet other people struggling with Lyme Disease and co-infections , and learn how to support Lyme Patients in your life. Great place to connect with people going through the same thing as you.
Sara found me through my blog, and we’ve been communicating and are now great friends! She is my ‘Lyme twin’, with nearly all of my symptoms and a very similar story. Her Ning page is a fantastic resource and great for connecting teen Lyme victims!!
Girl About Lyme:
A friend from Connecticut’s struggle to over come a long battle with Lyme Disease. The story sounds familiar: short walk in the woods, misdiagnosis for years, odd symptoms, and finally leading to Lyme disease.
Riley and his family (from Alberta) write their incredible story on their blog, detailing the story of their son, in his late teens, who is struggling with Lyme disease. His story will sound very familiar to those suffering with Chronic Lyme disease, and Riley’s positive attitude is very uplifting to read about. I wish them the best of luck on their journey, which has taken them to California, seeking treatment.
The Schmidt Report->
Also known as Chronic Lyme disease in British Columbia, it was published more than a year ago (and only just recently released to the public), Brian T. Schmidt’s report entitled “Chronic Lyme Disease in British Columbia: A review of Strategic and Policy Issues” does not spout the usual government nonsense about Lyme Disease. Instead, this document focuses on the whole truth, including the rather bizarre Lyme policy now in place, and points out the inconsistencies the BCCDC and other health agencies have been spouting. It is certainly a step forward in the right direction, but the document was only now released to the public, after a hard fight with the agency. It was released through the magical FOIA (freedom of information act) and the hard work of Gwen Barlee, a fellow Lyme sufferer.Read the whole story on Global News: Most B.C. doctors not trained to diagnose Lyme disease
With a bit of luck, and persuasion, something will actually happen in direct result of this report. The truth is exciting, but keep the pressure on the BCCDC and IDSA will be key in not letting this story slip quietly out the back door.
Please, check out this interesting document, and pass it along. If you can, please print out a copy, or refer your doctors to the link, so they may read this interesting report.
There is a new petition, to try and get the suggestions recommended in this report put into affect in Canada. Please sign it here!
Cure Unknown: Pamela Weintraub’s incredible book, looking personally at the Lyme epidemic. “A groundbreaking investigation into the medical history, patient experience and brutal political war over Lyme disease.” You won’t want to miss it.
Insights into Lyme Disease Treatment:
Suggestions: 13 Lyme-literate health care practitioners share their healing strategies: including a few of mine. “One of the most important books on LYme disease treatment published in the past decade…” -Stephen Harrod Buhner (author of Healing Lyme).
The Lyme Disease Solution:
The Bible: Dr. Kenneth B. Singleton’s compendium of the aspects of Lyme disease, including symptoms, treatments, tricks and solutions. It is a highly informative book, with simple, concise explanations. “If you are a Lyme patient and have an open mind, this book will enlighten you on your pathway back to health and wholeness.” ~James A. Duke.
Chris PowellFebruary 5, 2016 at 5:48 am
Hey my spunky girl,Reply
Thanks for putting pen to paper once again! I’ve truly missed reading your blog posts. One of the reasons is because it gives me a different sense of the ‘you’ i see everyday, and two- I love your unexpected style. Keep surprising all of us. And remember, Mrs Crossley wants to be the first in line when you sign your first book deal:) Well, she’ll actually have to be behind me.