Friday, 19 October 2012

Lyme Disease in Canada

We pulled this tick off of my husband's leg!
As a concerned citizen, and a researcher/writer and speaker on healthcare, I believe Canadians must become educated to prevent issues before they occur.

Lyme Disease strategies in Canada
1. I believe that I believe self-prevention and awareness is the key.
 2. The second piece is education for potential patients. For those who work and play outdoors, ignorance is no excuse.
 3. The third piece is education of physicians, many of whom are very quick to come to a false diagnosis. My issues with poison ivy are a perfect example that parallels these medical errors.
 4. The final piece is finding research-based treatments, which is difficult in the for-profit culture of healthcare in the US. Canada must lobby physicians to be more proactive.

The very smartest people I know, in this area, are Provincial Park staff who work in tick territory. At our local park they picked off a dozen ticks one week.

All tuck their pants into their socks. They check for ticks on a regular basis. It would be prudent for anyone who goes outdoors to do the same. Especially, parents must be vigilant. They must know what a tick looks like and they must check their children faithfully. Children are always vulnerable to disease.

Linda Kelso wrote me and wanted to turn my attention my mistakes in my blog post. Truthfully, there are always three sides to a story. Yours, mine and the truth. I find much in the media who choose to blame one person, or government, or an organisation in any issue. Bullying is a prime example. We blame teachers, or bullies, or the lack of mental health care. Truthfully, we are all responsible; individuals, friends, peers, family, GPs, and staff who work in the field. Politicians are not going to help us here. They only want to be seen to be doing something, not necessarily finding the solution to an issue!
Black fly bite

Unfortunately, as with HIV, there are many myths, and little peer-reviewed research. We know what our PM Harper feels about science. It is no wonder this situation exists for many scientific issues. For this reason, taxpayers don't want to pay for this science, we must be proactive.

As with any pieces of information, the consumer is why to do their own research. I don't know who Linda Kelso is, she may well be paid by a for-profit. The key to Lyme Disease is removing the tick before 24 hours, the time it takes for the bacterium to get into your blood stream. This is not true for mosquitoes, 

Linda Kelso wrote:
Hi, Jenn!  I have to comment on your blog on Lyme disease.  If I did not have a daughter only recently diagnosed with chronic Lyme disease after 15 years of increasing disability and countless tests and visits to easily 60 doctors here and in the States who had not once suggested Lyme disease, I likely be posting something similar to what you posted with skepticism about those "for-profit Lyme Disease specialists (who) prey on victims of Lyme Disease." Now I know better. 

My husband and I have had to become educated about Lyme disease (and all Lyme patients have to self-educate, their doctors sure don't know about it).  So, we have also stepped into the advocacy role for awareness and better Lyme education (physician and public).  We volunteer our time at events to talk to people and help answer their questions on Lyme testing and treatment because we don't want others to have to go through the situation we have experienced and are experiencing still.    

In fact we were out your way Sept. 8th with the Lyme Mobile attending the Spencerville Fall Fair in order to help the numerous people out there who suspect they have Lyme disease but don't know where to turn for answers, their doctors dismiss them more often than naught.  Lots of people out your way are affected by Lyme and the co-infections you can get from ticks, it is a hot spot for infected ticks.  The medical community is divided into two sides on Lyme disease which is so detrimental to those who are suffering, disabled and likely financially struggling.  There is a fabulous, award-winning documentary called "Under Our Skin" (a U.S. film) and it would be a good start to learn more about why there are two sides to the story.  Must warn you it is a shocking story and seeing the severity of the effects of Lyme disease is disturbing for someone who is not aware of what Lyme disease can do to a person. 

black fly
 There are two very well-respected and world-renown foundations in Canada for Lyme disease - and Both websites will fill you in on the controversy, the science and the need for awareness, better testing and appropriate treatment in Canada. We are fortunate to have both organizations working so hard to turn things around but it is a hard battle because of the controversy over treatment. As well, there are numerous media podcasts and published links that you can read up on Lyme. 

 In fact, Jim Wilson, president of CanLyme was on Goldhawk's radio show this morning once again. (Goldhawk Fights Back am740 Zoomers radio – October 17th, 2012- Lyme
Anna Marie Tremonti interviewed Dr. Maureen McShane in June 2010 and Sept. 2011 on 'The Current.'  Dr. McShane lives in Montreal, was bitten by a tick in her garden, came down with increasing mysterious disability, terrible pain and mental dysfunction, had to close her family practice in Plattsburgh, NY because she couldn't retain anything her patients were telling her and they were telling her she was repeating herself.  No doctor could figure out what was happening to her, including the good doctor herself. A patient came in to her office as she and her husband were packing up the last boxes.  She said she didn't remember him (that would be Lyme!) but he reminded her of his symptoms and he said she was right in guessing he had Lyme disease.  He had come by that day just to thank her for returning him to health by referring him to the Lyme Literate doctors in New York City.  

A lightbulb went on, she remembered her own tick bite and headed off to the same doctors.  Two years later, she was able to re-open her practice but in the meantime she took the training to become a Lyme Literate doctor  - go to (Editor's note: This site is defunct.) Now her practice is largely Canadians with Lyme because we cannot get treatment in Canada, and we have to go south and pay for treatment. 

 Anway, that is enough for now.  
I'd be happy to answer any questions you might have.   
I do hope you will make some revisions to your blog and that you will also help with Lyme education and awareness, it is needed. 
Regards, Linda Kelso


3. Myths about Lyme Disease (Canadian

Myth 6
Lyme disease testing has a ‘gold standard' in Canada.

The Truth

There is no universally accepted test for Lyme disease. Every lab test has its advantages and disadvantages, but overall Lyme tests in Canada are largely flawed. Other labs recommended by CanLyme are all certified and accredited, run by PH.D's who simply refuse to follow flawed testing protocol. Canada has no mechanism for better testing due to bureaucratic controls that are influenced by for-profit players, and not victims and their experts.


DUTA said...

Very interesting and thought provoking post! It's relevant for all people not only for canadians.

Red said...

Ticks really give me the creeps as they are so sneaky. It's hard to notice them. Lyme disease is certainly scary because it's serious and often not diagnosed.