Saturday, May 30, 2009

Lyme Action in Elora

Elora rocks!

Lyme Action Group, together with the Lyme Disease Association of Ontario, participated in the Sustainable Futures Aware Fair in Elora today, an event to raise awareness about environmental issues and human rights, and the link between them.

Sharing our booth with Habitat for Humanity and right next door to the enticing aroma of Planet Bean's fair trade coffee, we were in good company. It was a great day and fortunately the rain held off!

Thank you to everyone who visited our booth, and signed our Ontario Legislature Chronic Lyme disease petition. Your support is much appreciated.

Compliments to the students of Centre Wellington District High School for your great work in organizing this event!

Lyme is the law in CT

It's official folks -- after unanimous approval from the Health Committee, followed by unanimous approval from the House of Representatives just a month ago, yesterday the Connecticut State Senate gave unanimous approval to a Lyme bill that offers protection to that state's doctors who diagnose and treat Chronic Lyme patients. The 36 to 0 decision makes Connecticut the third state to adopt Lyme doctor protection legislation, following in the footsteps of California and Rhode Island (in addition to New York, which implemented a non-legislative solution).

An excerpt from the Lyme Disease Association press release follows:

HB 6200 contains language that will protect CT licensed Lyme treating physicians from prosecution by the State of Connecticut Medical Examining Board solely on the basis of a clinical diagnosis and /or for treatment of long-term Lyme disease. The bill provides the definition for Lyme disease which includes “the presence in a patient of signs and symptoms compatible with acute infection with Borrelia burgdorferi; or with late stage or persistent or chronic infection with Borrelia burgdorferi, or with complications related to such an infection.” It also defines clinical diagnosis as determined by a physician “…that is based on knowledge obtained through the medical history and physical examination alone, or in conjunction with the testing that provides supportive data for such clinical diagnosis.” In addition, it provides for updating the Lyme disease definition if other strains are found to cause Lyme disease.

The full press release is linked here. The complete text of the Act Concerning the Use of Long-Term Antibiotics for the Treatment of Lyme Disease, which will come into effect on July 1st, 2009, is linked here.

Another victory for the Lyme community. But let's keep the momentum building. CanLyme's president Jim Wilson has issued the following challenge:

I want to attach another copy of our 2008 letter to the Chief Public Medical Officer for Canada, Dr. David Butler-Jones. He seems to have been able to simply ignore this letter. Please let your MPs know that we demand action. Send them another copy of the letter. Do not let them off the hook here. With the passing of the law in Connecticut we demand to know on what basis our own health care system is refusing input from patients and protection for doctors. Don't be afraid to ask your MP for a response in writing as to what steps they intend to take to enforce the rights of Canadian patients, Canadian doctors and the Canadian Lyme Disease Foundation's medical experts to establish Lyme guidelines for Canada.

Please write your representatives today. MP and MPP contact info can be accessed conveniently through the Lyme Links to the right of this article. Together we are making a difference!

Wednesday, May 20, 2009

Magnotta and CanLyme take to the airwaves

Controversial radio ads launched this month across Canada.

Lyme disease is the fastest growing infectious disease in the world but the Canadian government won’t acknowledge this fact because it lacks proper understanding of the disease, continues to provide Canadians with poor testing methods and operates on the belief that the disease is rare in this country. That’s the root problem in fighting Lyme disease in Canada according to Magnotta Winery Corporation and the Canadian Lyme Disease Foundation (CanLyme) who have teamed up to challenge the government’s stance on this complex illness with a series of radio ads launching this month, the first of their kind in Canada.

So say Magnotta and CanLyme, and we would have to agree. The complete press release is linked here. If you haven't yet heard these ads on your local radio station, you can listen to the informative radio spots through these links:

Lyme Radio Ad #1
Lyme Radio Ad #2
Lyme Radio Ad #3

If you are not already aware, Magnotta has for a few years been bottling a delicious red wine (no bias here...) as a fund raiser for CanLyme's goal of establishing a Canadian Lyme disease research facility and clinic. A portion of the proceeds from the sale of this wine go to CanLyme for this purpose. Check out the Magnotta link in our Lyme Links in the right-hand column for more info.

Also, it is not long until the 4th Annual True North Golf Tournament (to be held at the Thornhill Golf and Country Club on June 1st 2009), another Magnotta event in support of CanLyme. To learn about this and other southern Ontario events planned for Lyme disease awareness month, visit Magnotta today.

Saturday, May 2, 2009

Another brick in the wall: AAPS on the IDSA Lyme Guidelines

The American Association of Physicians and Surgeons (AAPS) takes a stand against the IDSA Lyme Guidelines.

A much more clever blogger would come up with some insightful alternative lyrics for you. That will have to wait for a day when the brain fog is a bit clearer -- or for a clever reader! For today, the classic lyrics will have to do.

"We don't need no thought control..."

Let doctors do their job for goodness sake! This would seem to be the general theme of AAPS comments on the IDSA Lyme Guidelines posted on their website last week. The Association of American Physicians and Surgeons, with thousands of members across the USA representing a broad spectrum of medical disciplines, seeks to promote the practice of good and ethical medicine.

The AAPS objects to the "overly rigid" stance promoted by the IDSA Lyme Guidelines. Doctors require some flexibility to be able to effectively do their jobs. The IDSA's excessive requirements for diagnostic test confirmation and restriction of doctor clinical judgement simply go too far. This statement by the AAPS sums it up beautifully: "Medical societies do not practice medicine; physicians do."

"No dark sarcasm in the classroom..."

A recent New York Times article (Harvard Medical School in Ethics Quandary), about inappropriate big pharma influence on America's medical schools, highlights a related problem. Are medical students being taught truly good medicine or what big pharma calls good medicine ($$$)? A movement, which began 4 years ago with a concerned first year medical student, now includes more than 200 students and faculty who are "intent on exposing and curtailing the industry influence in their classrooms and laboratories." According to the American Medical Student Association, the prestigious Harvard currently scores an "F" in this category.

Such conflict of interest is the sort of thing that got the IDSA into trouble in the first place. As explained by science writer Kris Newby in the Lyme documentary Under Our Skin, several of the original IDSA Lyme Guidelines panelists had undeclared conflicts of interest relating to big pharma and the medical insurance industries. The same conclusion was reached when the Connecticut Attorney General wrapped up the historic anti-trust investigation of the IDSA last year. This on top of the IDSA's blatant refusal to give meaningful consideration to the abundant information supporting the existence of Chronic Lyme disease.

"I have seen the writing on the wall..."

With the public input period to the new IDSA Lyme Guidelines panel now closed, we wait with great anticipation for the "open" public hearings that have been rescheduled for July 30th in Washington DC.

Could it be that the perfect storm of medical experience, science, and political fortitude is finally reaching a long awaited convergence? Oh, let's hope so.

Friday, May 1, 2009

Brooke Landau's story from San Diego 6

This is such a great and encouraging story. You may have heard her interviewed on other occasions -- including an appearance in the award-winning Lyme documentary Under Our Skin. Thanks to CanLyme for bringing this to the attention of the Lyme community.

Californians, like many of us in Canada, are frequently told "you couldn't possibly have Lyme -- we don't have it around here" or "your labs are fine, it's all in your head". Granted, California is not the American ground zero for Lyme disease, but the reality is that the disease has been found in every state of the USA and numbers of new cases continue to rise annually (just as it has been found in every province of Canada).

Well Brooke Landau, a weathercaster for San Diego's Channel 6 News, found herself in that situation some 14 years ago. It wasn't until a year after an encounter with a tick that her Lyme symptoms kicked into gear. Inaccurate Lyme tests further delayed her diagnosis for several years. Interestingly, part of her recovery included use of hyperbaric oxygen therapy as part of a research study being conducted by her doctor. Brooke's story includes many now familiar themes, including her doctor having to fight in order to keep treating Chronic Lyme disease. After years of treatment, she is now Lyme-free! Those are magic words for many of us in the Lyme community.

You can watch Brooke's inspiring story in the clip below. This originally aired on Sunday, February 1, 2009. This link goes to a more detailed written account of the story on San Diego 6's website.