Friday, October 15, 2010

ILADS Conference 2010

Today is the first day of the 2010 ILADS Lyme Disease Conference, being held in Jersey City, New Jersey. If you're not one of those lucky folks to be attending in person, you can tune in to the live streaming of today's presentations and panel discussions by clicking here. You can also download a complete program of the weekend's events and check out when the various speakers will be at the podium.

Just a side-note that next year's ILADS conference will be held in Canada in Toronto. It's scheduled for 28-30 October 2011. Mark it on your calendars and spread the word. This will be a great opportunity to engage our medical community with the front line of this devastating but treatable disease.

The International Lyme and Associated Diseases Society (ILADS) is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

Tuesday, August 17, 2010

September Extravaganza

Please be advised that there is a large book fair
happening around the Queen's Park area on Sunday.
For those driving to the Theatre screening of the film,
this event may affect road access around Queen's Park
Crescent, and immediately north thereof.
(don't forget to dress warmly!)

If you live within driving distance of the Ontario's capital city, September is going to feel a lot like Lyme disease awareness month all over again. There are two back-to-back exciting events planned in the hope that some will be able to take part in both.

Screening of Under Our Skin
The first is a theatrical screening of an award-winning Lyme documentary on Sunday, September 26th. 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. Each year, thousands go undiagnosed or misdiagnosed, often told that their symptoms are "all in their head." The film follows the stories of patients and physicians fighting for their lives and livelihoods, bringing into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients.
Under Our Skin
Isabel Bader Theatre
Sunday September 26th
1:00pm matinée & 7:00pm evening screenings
3-hour event includes discussion panel after the film
Brochures and other info available before the event
Doors open 1 hour before scheduled time
There will be a matinée and evening showing, each followed by a VIP Panel discussion (including film director Andy Abrahams Wilson!). Proceeds from this event will support CanLyme's goal of establishing Lyme research and treatment facilities in Canada. A downloadable brochure (4 per 8.5x11" page) is available if you would like to invite friends, neighbours, doctors, etc. Complete event details and online or phone ticket sales can be accessed via Tickets will also be sold at the door, subject to availability. We are looking for volunteers to help distribute posters around Toronto, as well as assist on the day of the event. If you are able to volunteer your time, please contact Rob for more details.

Wall of Hope 2010
The second big event to tell you about is the annual Wall of Hope demonstration. Events are again being planned in several cities across the country this year. Our Toronto event will take place on Monday, September 27th on the south lawn of Queen's Park, right in front of the Ontario Legislature. The event will officially run from 12-noon until 1:00pm -- 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.
Wall of Hope
Queen's Park (south lawn)
Monday September 27th
12 noon until 1:00 pm
Picnic lunch to follow event
The green arrow (see map below) marks our meeting place on the Legislature grounds, right outside the grand main entranceway. There is no parking available immediately on the grounds. Limited paid parking is available on the University grounds on the west side of Queen's Park as well as area municipal lots. The TTC Queen's Park subway stop is conveniently located steps from where we will be meeting.

Lyme Action is pleased to be handing out complimentary T-shirts to attendees -- come early and get one while supplies last! This is our thank-you to you for your continued support. Thank you!

View Larger Map

Remember, both of these September events are scent-free.

So September will be a great time to be in Toronto. Consider making a weekend of it and take in both events. Please help us spread the word. Let's keep the momentum building and keep raising awareness about Lyme issues. There has been some good progress this year, but there is so much still to do. See you in September! Drop Rob an email if you have any questions.

Tuesday, July 27, 2010

Turning up the volume / Stage 2

Recently we gave the Ontario Ministry of Health some grief regarding the quiet launch of its Lyme awareness campaign in June. Awareness is so vitally important, if it is not done effectively, one would question why they would do it at all. Well we must give credit where credit is due -- we are very pleased to report that, as hoped, the Ministry has indeed turned up the volume.

The Ministry's Let's Target Lyme campaign continues to roll out. Brochures are reported to be popping up in LCBOs and other retail establishments. They have also added an informative and entertaining video segment to their website, introducing a character named Curtis "The Bug Guy". The video clip is embedded below -- definitely worth a watch.

Included in the video are instructions of how to properly remove and save a tick, and take it to your doctor for testing. What the Ministry doesn't tell you here is that the existing tick testing protocol dictates that only Deer Ticks will be tested -- any other types will simply be discarded, regardless of whether you have symptoms of Lyme disease or not. Granted, Deer Ticks are the most common tick known to spread Lyme in Ontario -- but they are definitely not the only ones. As we have come to understand, migrating birds play a major role in the distribution of ticks throughout the province. We have a gentleman in our group, for example, who was bitten and infected by a Lone Star Tick up in Ontario's cottage country. As its name would imply, this kind of tick is much more prevalent in the south-western United States. But just as our Border Control Services do not stop ticks at the border to Canada, similarly, migrating birds don't control what kind of ticks hitch a ride with them. This is a weak point in the Ministry's tick testing protocol that should be addressed.

Additionally, over the last several weeks, the Ministry has been sending out a mailer to Ontario physicians across the province. You can access the 2-page document here (Message from the Chief Medical Officer of Health). One of the highlights of this document is that it dispels the myth that Lyme disease can only be contracted in endemic regions. It informs doctors that Lyme can be contracted anywhere in Ontario. Unfortunately, the document fails to inform doctors about the limitations of the existing Lyme testing protocol in Canada. This is where the whole awareness campaign gets a very low mark -- and it really could do more harm than good. Unless physicians know that the existing testing protocol is unreliable, many Lyme patients will unfortunately be misdiagnosed. This is precisely what happened to so many of us across the country who are now battling Chronic Lyme disease. A delayed diagnosis most certainly results in serious chronic illness. Physicians need to be made aware that a negative Lyme test should never ever be used to rule out Lyme disease. Much more needs to be done to make physicians aware of the clinical presentations of this disease. To that end, CanLyme has prepared this "For Physicians" information -- what every physician should know about the disease.

Last week, CTV News aired a Lyme story on its Lifetime segment, with Health Reporter Pauline Chan. You can watch the video clip here. CTV continues to do a great job of providing good information about Lyme disease, such as:
  • the number of cases of the disease continues to rise in Ontario
  • the disease is difficult to detect
  • it can cause years of debilitating illness if not diagnosed quickly
  • up to half of those infected may not even show a Lyme rash
  • it is often misdiagnosed as MS, Chronic Fatigue, Arthritis and many other illnesses

CTV kindly acknowledged that last week marked the official retirement of Ontario Lyme physician Dr. Jozef Krop (pictured above).  What they left out, was that this doctor's retirement is largely the result of an investigation by the College of Physicians and Surgeons of Ontario (CPSO). The CPSO launched this investigation back in 2008, without one single patient complaint. The investigation centred around the doctor's treatment of Lyme disease. Dr. Krop, who has taken a particular interest in this disease, is trained by the International Lyme and Associated Diseases Society (ILADS). He used ILADS treatment protocols based on the latest research into this debilitating illness. But it so happens that the ILADS approach to Lyme disease is distinctly different from that of the mainstream Infectious Diseases Society of America (IDSA). And this is the centre of the political divide that has callously left so many Lyme patients without access to appropriate care. The CPSO, like other Colleges in the country, has ruthlessly declared open season on progressive Lyme doctors who are earnestly trying to help their patients. So Dr. Krop's departure means that experienced Lyme physicians are perilously close to becoming extinct in our province, forcing many patients to make the costly choice of seeking medical care in the United States. Infectious Disease specialists in Ontario routinely turn away Lyme patients because they have negative Canadian Lyme tests on file -- tests that are known to be seriously flawed and produce high rates of false negative results. While several American States have passed Lyme physician protection laws (Massachusetts is the most recent as of this month), the political courage has yet to be found in Canada to take such a bold move in support of Lyme patients and their physicians. There is so much more that still needs to be done.

A grateful shout-out goes out this month to Dale Goldhawk. His popular program, Goldhawk Fights Back, helps consumers where the powers-that-be have failed to do so. Recently he has taken up the cause of Lyme patients in Ontario. He has conducted several Lyme-related interviews on Zoomer Radio AM740, including an interview with Dr. Maureen McShane, who treats Lyme disease patients in New York State. There is another interview scheduled this week, Thursday July 29th, at 12:10pm (the whole program runs from 11:00am until 1:00pm) with an Ontario Lyme patient/patient advocate. If you are not within broadcasting range, you can listen live from the station's website. Don't miss it!
Please send a brief note of appreciation to Dale Goldhawk and thank him for his interest in Lyme issues and what he is doing to increase awareness. A link to the audio from Thursday's interview will be posted when it becomes available.

While all of these positive efforts are underway, there are still those who are steadfastly opposed to making changes to Lyme treatment protocols in Canada. You can count among them our Federal Health Minister, Ontario's Health Minister and many of her provincial counterparts. What these people fail to comprehend is that the perceived risks of aggressive and early preemptive treatment of Lyme disease do not even remotely begin to compare to the devastation that late stage or Chronic Lyme disease causes to patients. The message of many of these policy makers is that Lyme is difficult to get, easy to treat, and our testing protocols are not only reliable, but if anything tend to produce false positive results. Here is a recent example of a particularly unhelpful Public Health Official from a news piece in British Columbia (Disease Expert Dismisses Lyme diagnosis).

And on that note, a closing thought:
All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
                    Arthur Schopenhauer
                    German philosopher (1788 - 1860)
Welcome to Stage 2.

p.s. Stay tuned for details of events coming up in September, including a Toronto screening of Under Our Skin (with special guest and film director Andy Abrahams Wilson!) and the annual Wall of Hope public demonstration at Queen's Park.

Monday, June 14, 2010

CBC Radio -- The Current

Good morning Canada! -- and beyond.

CBC Radio listeners were treated to an interesting conversation about Lyme disease this morning. Anna Maria Tremonti, host of the The Current, interviewed two doctors; Dr. Maureen McShane, a physician practising in New York State, and Dr. Nicholas Ogden, with the Public Health Agency of Canada.

So let's compare these two fine people. Dr. McShane is a practising physician. Dr. Ogden researches ticks. Dr. McShane treats Lyme patients. Dr. Ogden researches ticks. Dr. McShane is a recovered Lyme patient herself, and has experienced the whole gamut of the Lyme adventure with which so many of us are intimately familiar. Dr. Ogden.... researches ticks.

I'm sure you're getting the point. Dr. McShane has a wealth of real life experience, both personally and through her practise. And while Dr. Ogden cautions about over-reacting to the Lyme crisis, Dr. McShane knows first hand that Canada's current testing protocols are a colossal waste of time, and that the result of a delayed diagnosis is devastating for Lyme patients -- resulting in long-term chronic health issues and sometimes even death.

And Dr. Ogden's suggestion that we will get a much clearer picture about the magnitude of the disease in our country now that it is nationally reportable... well, that's the kind of material that might well benefit your vegetable garden. The truth is that national reporting of Lyme disease will continue to be a fruitless (and highly misleading!) endeavour, as long as it is based on Canada's seriously flawed testing protocol, with its high incidence of false negative results.

The vast majority of Lyme patients in our country were diagnosed with the help of a good quality test from a fully certified and accredited tick-borne illness laboratory in the United States, while their Canadian lab tests were negative. All of us in that category are not included in those wonderful national statistics about Lyme disease.

Two thumbs up to Dr. McShane for boldly speaking out on this important subject.

If you missed this morning's radio show, you can access it on the CBC website (see Pt2: Lyme disease). Please provide some feedback to The Current -- let them know what you think and encourage them to do more coverage about Lyme.

Wishing you all good health!

Saturday, June 5, 2010

Lyme disease awareness

Well the month of May has come and gone – Lyme awareness month is over for another year. We hope you found a way to mark this occasion and raise awareness in your community.

And what a month it's been! Looking back over recent weeks, there were some important happenings of note.

The province of Ontario has quietly launched a Lyme awareness campaign called Let's Target Lyme!, encouraging Ontarians to “be tick smart”. Why quietly? Who knows. But hopefully they will turn up the volume soon. Thank you to an observant listener who happened across a gardening radio call-in show in the Ottawa area where the campaign was briefly mentioned. There is some really good information on the campaign website, both for the public and the medical community – we commend the Ministry of Health for making this information available. Unfortunately, the website does continue to promote Canada's seriously flawed testing protocol. What the province has completely failed to recognize, is that the result will be catastrophic for countless Ontarians who will be misdiagnosed or have a delayed diagnosis during this prime tick season, adding untold numbers to the ballooning ranks of the chronically ill in our province. Hey! Province of Ontario, if you're listening: Lyme disease is most successfully and economically treated when it is diagnosed early. Canada's current testing protocol, combined with the abysmal lack of awareness in the medical community, makes a timely diagnosis next to impossible. That's got to change.

Lyme awareness is being highlighted in many areas of the province and beyond. Here is a sampling. If you see something in your area, please let us know.

  • The Pitch Pine Post, Parks Canada (a Spring 2010 publication for the St. Lawrence Islands region, print only) – related content on the Park's Canada website (Ticks and Your Health).

Nationally, a big thank you to CTV's W5 for recently rebroadcasting their excellent investigative journalism piece from November 2009 (Out of the Wild).

Last year's successful Lyme awareness radio spots, produced by CanLyme and Magnotta Wines, are back on the airwaves for another season. Here is an excerpt from a recent Magnotta press release, which provides an excellent summary of the current problem in Ontario and throughout the country:

“One of the top ten misdiagnosed diseases in the world which is now found in all Canadian provinces, Lyme disease is a bacterial infection caused by the bite of an infected tick that causes flu-like symptoms in the beginning. Currently affecting millions of people, Lyme disease is curable when properly diagnosed and treated early. However, when misdiagnosed, Lyme becomes debilitating, chronic and sometimes irreversible, even fatal. This multi-organ infection can attack a person’s heart, brain, bones, muscles, digestive system, skin, eyesight, hearing and more. It can cause symptoms that mimic other diseases resulting in a prolonged misdiagnosis.”

John Scott, Ontario's celebrated tick researcher, has coauthored a recently published paper in the June 2010 Journal of Vector Ecology. The paper highlights some very important observations, which help us understand why Canada's Lyme testing protocol is such a colossal waste of time. It is now well-documented that there are many subspecies of Borrelia present in Canada. More importantly, numerous subspecies are known (and have been known for some time!) to be important causative agents of Lyme disease infections in humans. Would you like to hazard a guess as to how many of those subspecies are detected by the Canadian tests? Come on, now – pick a number.... Well, if you chose a number higher than 1, you are sorely mistaken. That's right – Canada's protocol tests for one and only one of the Borrelia subspecies (in research circles, that species is known affectionately as B31). So while our policy makers continue to parrot the party line that we have nothing to worry about, that Canada's tests are based on the best available scientific evidence, the reality is that our protocol is seriously flawed and misses the vast majority of Lyme cases in our country.

Just last week, news broke that Ontario Ombudsman André Marin has been unanimously approved by all parties for another 5-year term as Ontario's watchdog. This, we hope, is good news for the Lyme community. Late last year, Lyme Action formally filed a complaint with the Ombudsman regarding the province's lack of appropriate action on Lyme issues. We have corresponded with every single sitting MPP in our province, and met in person with several of them. There was a Lyme awareness rally at Queen's Park last September. A petition with more than 1,400 signatures was presented in the Ontario Legislature. We met with various persons within the Ontario Ministry of Health. None of it moved the Minister of Health to take action. We hope a sober second look by our now officially-reinstated Ombudsman may precipitate something more substantive from our policy makers.

Here are a few coming events you won't want to miss.

For those of you in and around Toronto, Helke Ferrie will deliver a Lyme lecture at The Big Carrot Health Food Store on Danforth this Thursday June 10th at 7pm. A regular contributor to Vitality Magazine, Helke was the Editor of our book project, Ending Denial. Copies of our new book will be on sale at this event -- no shipping charges!

For those of you in the Golden Horseshoe region and thereabouts, don't miss the next meeting of the Lyme Disease Association of Ontario (LDAO). Scheduled for Saturday June 12th in Acton, the special guest speaker will cover the subject of Medical and Disability Tax Credits – come and learn everything you need to know to maximize your tax credits for next year. For more info, please contact LDAO President Court Steggles. Note that LDAO is a membership-based research and support group. Annual fees are $40, and new members are welcome at any meeting. Full details below -- you can also download this meeting invite, complete with map. Ending Denial will also be available at this LDAO meeting.

LDAO Spring Meeting
Saturday June 12, 2010
1:30pm – 3:30pm
Trinity United Church
70 Mill Street East, Acton

And finally, a big thank you to everyone supporting us through continuing sales of our new book Ending Denial. This will be a powerful tool to communicate with our policy makers throughout Canada. We have already got it in the hands of every single MPP in Ontario. And that's just for starters – your support will help us do much more. For a great overview of the book, see May's Vitality Magazine column by Helke Ferrie.

Wishing you all good health – together we are making a difference!

Monday, May 17, 2010

Ending Denial

And what are we doing to mark Lyme disease awareness month, you may ask? Well we are launching a book! We are now accepting orders for our new book, Ending Denial - The Lyme Disease Epidemic: A Canadian Public Health Disaster (front cover pictured at left; click for larger image).

Canadians are routinely told by their doctors that Lyme does not exist in Canada and that there is no such thing as its chronic form – its most devastating form, also known as “the great imitator”. The few Canadian doctors actively involved in diagnosing and treating Lyme are frequently persecuted by their licensing authorities when treating Chronic Lyme cases according to international standards; the Canadian Blood Services do not even screen for Lyme (as most other countries do, including the US), and Canada’s Medicare system endorses only tests for Lyme known to produce false negatives -- Canada’s doctors are not permitted to use tests that are internationally known to be reliable. This book examines the reasons for this corruption of medicine and erosion of public health standards in Canada.

"If you or someone you love may be suffering from Lyme disease, this book is for you. If you want to know what's wrong with our health care system, this book is for you. If you have wondered why every conversation about our health care system in Canada and the US ends up being about money, this book is for you. Read it and bear witness to the courage of those who challenge the status quo and truly put patients first. Read it to help protect yourself from the vested interests that have kept doctors and patients in the dark about the true nature of Lyme disease. Read it to understand how blindly doing what the doctor says may be the most dangerous thing you could do for your own health."
-- Terence Young, MP Oakville, Ontario
(author of Death by Prescription)

This project, commissioned by Lyme Action Group, is a compilation of writing from scientific, medical, political, patient and legal contributors. All contributors donated their efforts for the purpose of assembling this Canadian perspective. As a result, we are able to direct all of the proceeds from the sale of Ending Denial toward our ongoing advocacy efforts. Your support in purchasing this book will help us give it the widest possible distribution in Canadian medical and political circles. This 500+ page book is an excellent resource for all Canadians. Consider giving a copy to your doctor. Use it to help educate friends and family. Please donate or recommend it for purchase at your local library.

Individual copies of Ending Denial are available for a donation of $30 or more, plus shipping and handling. Orders of 5 or more books will be discounted 50% (regular shipping and handling charges apply). Shipping and handling charges are $10 for the first book, and $3 for each additional book. All dollar amounts are Canadian funds, for delivery within Canada.

Orders can be made conveniently through our PayPal donation link (right-hand margin), which allows quick and secure payment from major credit cards or your own PayPal account (please specify the number of copies of Ending Denial with your payment -- look for the "Send a message with your donation?" link on the confirmation page while completing your PayPal transaction). You may also send personal cheques made out to "Lyme Action Group" to our mailing address, which is P.O. Box 1095, Mount Albert, Ontario, L0G 1M0. For orders outside of Canada or any other questions, please contact us for further information.

Examples of total order costs, including shipping and handling:
1 copy, $40 or more
2 copies, $73 or more
5 copies, $97 or more

Thank you for your support -- together we are making a difference!

The back cover is pictured at right; click for larger image.

This book is dedicated to:
Dr. Joseph Kucan, 1946-2009. Dr. Kucan was the driving force that made the Lyme Action Group of Ontario a reality. His warmth, humanity, insight, determination, and strength inspired all of us who struggle with the burden of Lyme disease and we all benefited from his compassion and inspiration.

Gabe Magnotta, 1949-2009. Gabe Magnotta, an entrepreneur in the wine industry, was strong enough to take on Ontario's liquor control board and win, but he lost his battle against Lyme disease. His family and his equally determined wife Rossana will not let his death have been in vain.

And to the doctors, who continue to have the courage to treat Chronic Lyme patients in defiance of the political and medical odds.

Friday, April 30, 2010

May is Lyme awareness month

So what are you doing to celebrate Lyme awareness month?

Hopefully you have found (or are organizing!) an awareness event in your neighbourhood -- the possibilities are endless; put up ribbons, distribute information, host a screening of Under Our Skin, or organize a Lyme lecture. Please drop us a line if we can help spread the word for your event.

Here is info on what's happening in the Fort Erie, Ontario area, just down the road from scenic Niagara Falls and across the border from Buffalo, New York. There will be four free screenings of Under Our Skin during the month of May!

Three of the screenings will be at the Fort Erie Public Library:
Centennial Branch -- 136 Gilmore Road
Saturday May 1st at 1:00pm

Centennial Branch -- 136 Gilmore Road
Tuesday May 4th at 6:00pm

Crystal Ridge Branch -- 89 Ridge Road South
Wednesday May 12th at 6:00pm

The fourth screening will be held at The Boutique Movie Theatre:
320 Ridge Road, Ridgeway
Monday May 24th at 7:00pm.

For more information or to reserve seating, please contact Melisa. Here is a downloadable poster for the event. Spread the word! For additional info about this award-winning documentary film, including film trailers and excerpts, please visit Under Our Skin online.

Thursday, April 22, 2010

IDSA abandons Chronic Lyme patients

In its final report released today, the IDSA's Lyme Disease Review Panel has concluded that no pressing changes need be made to the 2006 Lyme guidelines. The IDSA has tragically failed the Lyme community in this determination. Citing a lack of controlled trials and high-quality clinical studies, the Panel placed little value on the extensive submissions by the International Lyme and Associated Diseases Society (ILADS) and other supporting information.

This excerpt from the final report provides a good summary of the IDSA's position:

"This conclusion [i.e. that there is no significant benefit to long-term antibiotic therapy] was reached despite the large volume of case reports, case series, anecdotes, and patient testimonials reviewed that attested to perceived clinical improvement during antibiotic therapy. Such evidence is by its nature uncontrolled and highly subject to selection and reporting biases. In many published case reports patients did not receive initial Lyme disease therapy consistent with the current standard of care, so it was impossible to be sure that shorter duration therapy had failed. In some cases the diagnosis of Lyme disease was doubtful based on clinical presentations consistent with other illnesses. Some patients were abnormal hosts and not representative of the general population. Many reports included patients whose diagnosis was made before the implementation of the CDC recommendation for 2-tier serological testing, and were therefore based on less stringent criteria. Finally, caution should be used in extrapolating results from European studies to North American patients, due to the well-established microbiological and clinical distinctions in Lyme borreliosis on the two continents."

The IDSA has missed an opportunity here. Rather than foster an environment in the medical and research communities where perceived gaps in information might reasonably be filled, the IDSA has adamantly cemented its position that Chronic Lyme does not exist. In spite of the IDSA, these gaps in information are gradually being filled. But how many lives will be destroyed in the meantime, while we are constrained by inadequate diagnostic tools and physicians who are for all intents and purposes discouraged from using their clinical judgment. We can speculate who is served by this report. It most certainly is not the best interest of patients.

If you can bear to read it, you can download the final report in its entirety or access it online from the IDSA website. The IDSA welcomes your comments.

The Connecticut Attorney General's Office has already issued a brief statement indicating it "will carefully and comprehensively assess the final report". Look forward to that. In the meantime, you can let the AG know what's on your mind by email.

This is a sad day indeed.

Saturday, April 17, 2010

Spring cleaning

Another spring season is upon us. Yes, that time of year when Lyme patients in the northern hemisphere renew the desire to shake off the shackles of our hibernatory albeit involuntary habituation.

Last year really was extraordinary in terms of media attention to issues of Lyme disease. Let's keep that momentum building! We need to continue to press our media and government, both locally and nationally, lest they forget how this devastating disease is impacting not only each one of us, but also countless other Canadians who become infected each year and are abandoned with inadequate access to testing and treatment. And as additional States go in the direction of legislative protection for Lyme-literate doctors, ensuring patient access to treatment options, we push on towards the day when the first of our provinces will take such a bold step. Will it be yours?

And what else may lie in store for us this year? No one knows for sure. But there are already some exciting entries in the calendar.

While snowbirds shivered in the south during recent months, many areas of Canada enjoyed a mild winter. But just as several States reported a significant increase in tick populations last year, there are indications we may experience a tick explosion of our own in 2010, as noted in this recent article in Manitoba's Winnipeg Free Press.

During the March Total Health Show in Toronto, raw milk advocate Michael Schmidt (Glencolton Farms) and constitutional lawyer Shawn Buckley (National Health Products Protection Association) reminded us that if we value our freedoms, we must make our voices heard. This is no less true for the Lyme community. April's Vitality Magazine includes a related article on the theme "Saying NO to Corporate Healthcare Fraud".

Just last week, an article in the Calgary Herald highlighted the problem of Lyme patients being misdiagnosed with MS and other chronic conditions. The article focused on the recent thesis of Winnipeg researcher Kathleen Crang.

Also last week, Bryan Allen's AM940 talk show focused on Lyme disease issues in Canada (you can download the 35 MB mp3 file here). The 2-hour program included interviews with Jim Wilson (CanLyme President), the renowned Dr. Ernie Murakami (Dr. E. Murakami Centre for Lyme Research, Education & Assistance), Rossana Magnotta (Magnotta Winery President who lost her husband to Lyme-related complications in December), and Lyme patients from across Canada. You can send a note of thanks to Bryan by email.

Looking forward... well first backwards. Remember last year's review of the IDSA Lyme guidelines? Yes that review -- the one that came out of the Connecticut Attorney General's investigation finding several conflicts of interest in the original guidelines preparation. Feedback on the review process was originally expected by the end of 2009. Then it was early 2010. The delay may be related in part to recent allegations by the Attorney General's office that the IDSA has failed to abide by the agreed voting procedure in assessing individual recommendations of the original guidelines. Amidst little fanfare, the IDSA website's Guidelines Review section recently issued a more definitive statement: its final report will be issued by the end of April. While unspecified, we take this to mean 2010... Please stay tuned.

Canada's foremost consumer advocate, Dale Goldhawk, will devote his Wednesday radio program to Canada's Lyme disease crisis. Remember to tune in to Goldhawk Fights Back on AM740 or listen online this Wednesday, April 21st, from 11:00am to 1:00pm.
***update*** You can download the 18 MB mp3 file from the radio broadcast here. Please drop a brief thank-you message to Dale Goldhawk and encourage him to cover this subject matter further.

And May, in many jurisdictions of the world, is recognized as Lyme disease awareness month. While Canada has shamefully failed to offer official recognition to this important issue to date, let's not let that stop us. Keep an eye out for local events in your community!

As examples of new life are springing all around us, here is a wish that each of us will be reinvigorated to push on. Let's continue our "tireless" (OK, this is obviously a very relative word for the Lyme community) pursuit of truth and justice, against the tyrannical status quo of the medical establishment and our government representatives.

"Never doubt that a small group of committed people can change the world. Indeed, that is all that ever has." Anthropologist Margaret Mead

Wednesday, March 3, 2010

Total Health 10 -- "Our Health, Our Planet"

It's that time of year again -- time for the 2010 Total Health Show! "Celebrating 33 years of striving to make a difference in the world", this year's event is sure to have something for everyone. The event takes place at the Metro Toronto Convention Centre from the 12th to 14th of March.

Of particular interest for the Lyme community is a presentation by medical science author Helke Ferrie. Her lecture on Saturday March 13th, room 203, from 3:00-5:00pm is titled Ending Denial -- The Lyme and Chronic Disease Epidemic in Canada. And this is also the title of a book to be launched at the Health Show. The book, which is a compilation of writing from doctors, patients and politicians, should prove to be a powerful and valuable tool as we continue to communicate our message to the powers that be. Do not miss this event. Be sure to visit Helke at the KOS Publishing exhibition booth 215. Members of Lyme Action Group will be her guests at the booth. Please stop by and say hi!

Thursday, February 4, 2010

Something is rotten in the state of Denmark...

Ok, altogether now... exhale.

No, this isn't a commentary on the increasingly long list of climate change scandals hitting the world by storm since the recent gathering of politicos pretending to be scientists in Copenhagen. Although there is something disturbingly ironic (well, several things actually) about COP15 taking place in the land of vikings and fairy tales. Just remember, folks, "The Medieval Warm Period doth not a hockey stick make, my dearest Horatio." Well, it went something like that. Btw, for a less reverent COP15 postmortem (perhaps one of the more intelligent deconstructions), check out Dr. Seuss at Copenhagen.

And another deep inhalation.... and out.

Where were we? Oh yes. If you, like many others, have been holding your breath waiting for the much anticipated results of the IDSA's new-and-improved Lyme guidelines review panel, apparently we should stop. Last year, the IDSA website advised we could expect feedback from the committee around the end of the year (2009). Then the ETA was changed to shortly after the first of the year (2010). But here we are in February, and the silence is deafening.

Or at least it was.

It seems the new-and-improved panel is up to its same-old-same-old tricks. Correspondence from the Connecticut Attorney General on the 1st of February reveals the panel has failed to abide by the terms of the agreement reached following the antitrust investigation concluded in 2008. It appears the panel manipulated the voting procedures in order to favour the status quo of the existing guidelines. The Attorney General is not amused. A package, including a preamble from Lorraine Johnson's LymePolicyWonk blog, the Attorney General's letter (begins on page 3), an IDSA letter outlining their commitment to the agreed-upon review procedures (begins on page 7), and the new guidelines Action Plan (begins on page 9), can be accessed here.

The Attorney General's letter indicates that the panel has thus far denied any wrongdoing (now there's a familiar refrain!), claiming full compliance with the Action Plan. And so the showdown stands. This may well explain the lack of any public response from the panel to date.

Elsewhere in cyberspace, there is some interesting reading on the website of the American Lyme Disease Foundation (ALDF). Much like the IPCC's one-sided "debate" on climate science, the ALDF has traditionally been an excellent place to visit for a very one-sided view of the world of Lyme disease (i.e. the narrow IDSA perspective). In fact, the gentleman who headed the 2006 IDSA Lyme guidelines panel is a member of the ALDF Board of Directors. In that context, it was somewhat disconcerting to read the following under the heading of "Treatment":

"Although treatment approaches for patients with late-stage LD have become a matter of considerable debate, many physicians and the Infectious Disease Society of America recognize that, in some cases, several courses of either oral or IV (depending on the symptoms presented) antibiotic treatment may be indicated."

Since when does the IDSA recognize the benefit of several courses of antibiotics?? But before you break out the champagne, they then go on to say there is no scientific evidence to support speculation that long-term antibiotic therapy is beneficial, while specifically warning of adverse side effects from long-term IV therapy.

Amidst this confusing crosstalk, could this be a sign the IDSA is preparing to soften its position?

In the meantime, keep breathing.