David Cubberley, the B.C. Director of the Canadian Lyme Disease Foundation has posted a letter to the B.C, Minister of Health. In it he provides a good synopsis of the situation facing more and more patients, not just in British Columbia, but also across the rest of Canada. Accurate information is being withheld from Doctors and from the general public. Testing is woefully inadequate. And many are suffering. Come on Canada, let’s get our act together. Don’t run away from lyme disease!

British Columbians are being denied access to medically necessary care due to flawed tests and an induced skepticism about Lyme’s prevalence promoted by the CDC on the U.S. model. Actions are needed to provide doctors with appropriate diagnostic tools and to free them to recognize and treat Lyme effectively when it appears in their offices. This is not difficult to do, but it means getting out from under the inadequacies of the BC CDC’s suppressive approach to this disease. And this needs to be done before the disease becomes an epidemic.

[From Lyme Disease Debacle: Let’s End The Denial]

The next number of days are very important for lyme disease awareness in Toronto and the Greater Toronto Area (GTA). Mainstream media involvement in spreading the word about the facts, risks and prevalence of lyme disease has been on the rise over the last year or so. Please, please, please…. if you know someone in the GTA forward the following information to them, especially if they enjoy the outdoors – cottages, hiking, camping, walking in the woods, strolling outdoors, etc… (yes, this pretty much covers everyone).

1. Tune in Friday Sept. 24th – “Under Our Skin” producer/director Andy Wilson will be interviewed Friday, Sept. 24th on Goldhawk Fights Back radio at 12:10 pm EDT ahead of this weekend’s film screening.

2. See the Oscar finalist “Under Our Skin” – A gripping tale of microbes, medicine & money. “Under Our Skin” exposes the hidden story of Lyme disease, one of the most controversial and fastest growing epidemics of our time. Sunday, Sept. 26, 2010 at the Isabel Bader Theatre, University of Toronto, Victoria College campus. Two showings. For more information, check out the Canadian Lyme Disease Foundation information pages (here, here and here).

3. Toronto 2010 Wall of Hope – Please join the annual public demonstration at Queen’s Park, to raise awareness about issues that continue to face the Lyme disease community.

• Queen’s Park (south lawn)
• Monday September 27th
• 12 noon until 1:00 p.m.

A message from the GTA Lyme support group:

The Toronto event will take place right in front of the Ontario Legislature. Please come early and bring along a packed lunch if you would like to join us for a picnic on the beautiful Legislature grounds following the festivities. We are honoured this year to welcome CanLyme president Jim Wilson to our event, in addition to MPP France Gelinas and lawyer Paul Haefling. Please make sure your MPP is aware and invite them to come and learn more about Lyme issues facing patients throughout Canada. Please put your creative juices to work and bring along some eye-catching posters. Come, be encouraged, and let’s make our voices heard! Let’s keep the momentum building. Visit Lyme Action online for additional information and any last minute announcements.

The media deserves credit when it is due. Lyme disease is an increasing health problem affecting thousands of Canadians, and many many more of our U.S. neighbours to the south. Over the past year, the number of informed reports has been dramatically increasing, and as a result, the public are beginning to develop an awareness. Also, medical groups are either beginning to squirm and take the issue of lyme disease a little more seriously, or they are lashing out. Both are a sign of increasing public pressure and progress.

Earlier this week Erin Ellis of the Vancouver Sun wrote an article that is one of the best I have read on lyme disease. It is balanced, and presents a story that largely resonates with what I have been through, and the frustrations I have felt trying to grab the attention of someone in the medical profession who would listen and act to help me. Earlier in the summer, the Toronto Star also published a good article, as have more and more mainstream news media outlets.

The next barrier is our federal and provincial politicians, the Public Health Agency of Canada and the Provincial Ministries of Health. Politicians in British Columbia have made some progress, but the rest are largely far behind. Let’s all work together to get the major issues around testing sorted out, so more and more people have a chance!

Lyme awareness month (May) is coming to a close. Public awareness is creeping forward. The Canadian Lyme Disease Foundation and many other groups are all spreading the word. The media is even taking a more prominent role. Last weekend the CTV W5 show from Nov. 2009 was screened again, just in time for Victoria Day weekend and to kick off the worst of the lyme season.

With the increase in public awareness comes an urgent need for better testing, more appropriate and timely treatment regimens, better informed and committed medical professionals, improved protection of our blood supply and better funded quality research. This may seem like a lot to bite off, but we need to make up for lost time. Progress has been very slow over the past few decades as the lyme threat has increased almost exponentially.

In spite of the lack of major sponsors and active researchers, important studies have taken place. Just recently, Jim Wilson of the Canadian Lyme Disease Foundation sent out a paper entitled “Detection of Lyme disease spirochete, Borrelia burgdorferi sensu lato, including three novel genotypes in ticks (Acari: Ixodidae) collected from songbirds (Passeriformes) across Canada.” It is being published in the June 2010 publication of the Journal of Vector Ecology. Its authors are John D. Scott, Min-Kuang Lee, Keerthi Fernando, Lance A. Durden, Danielle R. Jorgensen, Sunny Mak, and Muhammad G. Morshed. John Scott is a well-known name to me, as he has been instrumental with the Lyme Disease Association of Ontario and has also been involved in important Canadian lyme disease vector research over the past number of years.

In brief, the research results bring into focus a major source of the lyme disease infections within Canada. Songbirds are beloved by many, but Scott and co-researchers found that 11.4% of the 366 ticks found on 151 songbirds from 16 different regions of Canada carried the Borrelia burgdorferi (lyme disease) bacteria. The paper is 16 pages long, and can be provided if any reader is interested (just leave a comment below). But it all boils down to the statement at the end of the paper abstract:

Because songbirds disperse millions of infected ticks across Canada, people and domestic animals contract Lyme disease outside of the known and expected range (Journal of Vector Ecology 35 (1): 124-139. 2010)

In other words, forget about the “conventional” wisdom that ticks carrying lyme disease are safely tucked away into discrete endemic areas in a few regions across the country. Yes they are much denser in some areas. But the truth is you can get it anywhere. They even found ticks on songbirds in the Yukon (north of 60 degrees latitude)!

Tweet, tweet.

Do you go camping each summer? What about hiking or walking in the woods or along a grassy trail? Do you spend time in areas visited by migratory songbirds? Do you live in a temperate climate zone? If so, pay careful attention!

Evidence of the escalating spread of lyme disease is mounting around the world. Maine has already been confirming lyme disease cases at a rate three times higher than normal. A relatively warm winter appears to be partly to blame. In Minnesota between 1998 and 2008 the number of recorded cases of lyme disease has increased by a factor of four. And in the Netherlands there has been an alarming rise in the number of confirmed cases over the past number of years. As the numbers continue to roll in, we are seeing increases pretty much across the board. Climate change seems to be partly responsible. Whatever the ultimate causes, the bottom line is that ticks carrying lyme borrelia and co-infections are spreading and affecting more and more people.

The stage is set for an incidence of lyme disease this summer that is much higher than normal.

Keep an eye out for some or all of the following symptoms:

1. Rash at the site of the tick bite (in less than 50% of cases)
2. Severe headache/head pressure
3. Gastro-intestinal problems (diarrhea or constipation, irritable bladder, upset stomach or GERD)
4. Joint pain or swelling
5. Muscle pain or cramps
6. Night sweats or unexplained chills
7. Fatigue
8. Tremors
9. Numbness, tingling
10. Dizziness
11. Mood swings, irritability
12. Depression
13. Disorientation
14. Over-emotional reactions
15. Sleep difficulties
16. Panic attacks, anxiety
17. Confusion, difficulty thinking
18. Difficulty with concentration, reading
19. Swollen glands/lymph nodes
20. Unexplained fevers
21. “Flu-like” illness
22. Allergies/chemical sensitivities

There are many more possible symptoms, especially as lyme disease (and the inevitable co-infections) develops. For a very comprehensive list, see Dr. Ernie Murakami’s site (an incredible lyme disease resource), and in particular, the list of symptoms on the About Lyme Disease page.