LYME ACTION GROUP

ONTARIO HEALTH STUDY - GIVE LYME DISEASE A VOICE!

2012-02-11T18:00:00.000-05:00

There is a not-for-profit study in progress that is funded by four organizations: the Ontario Institute for Cancer Research, Cancer Care Ontario, Public Health Ontario and the Canadian Partnership Against Cancer. The Ontario Health Study is part of the Canadian Partnership for Tomorrow Project, which is made up of five regional health studies across Canada.

About the Study (via Ontario Health Study website)
The Ontario Health Study is an exciting opportunity to learn how our lifestyle, our environment and our family history interact to affect our health over time. By participating in this online study, you can help researchers as they investigate common risk factors for diseases such as cancer, diabetes and heart disease, among others. This is your chance to help prevent disease and improve strategies for the early detection and treatment of illnesses.

https://ontariohealthstudy.ca/en/home

NEW Borrelia Blood Culture Test by Advanced Laboratory Services Inc.

2012-02-08T15:41:00.000-05:00

(the following is a press release from Advanced Laboratory Services):

THE NEW LYME BORRELIA BLOOD TEST

Advanced Laboratory Services Inc. has developed a revolutionary new blood test for the detection of Borrelia spirochetes that clearly will change how Lyme Disease is diagnosed and treated. The methods involved in this culture are complex and proprietary and are still a trade secret, but many details will be outlined in upcoming publications. Here is the story of this new test:

BACKGROUND

Lyme Disease, an infectious disease caused by the spirochete Borrelia burgdorferi (Bb), is the most prevalent vector-borne disease, and fastest growing infectious disease in this country, surpassing even HIV/AIDS. The CDC estimates that in the USA there are more than 300,000 new cases each year, and there may be as many as four million currently infected. Many patients remain undiagnosed and misdiagnosed with other illnesses. In addition, Lyme has unfortunately become a somewhat controversial illness. The major reason for all of this is the poor sensitivity and specificity of currently available diagnostic tests.

The available serologic tests for Lyme are indirect tests- because they measure antibody levels and not the bacteria themselves, they do not indicate whether an infection with Borrelia is currently present. At best they can only indicate possible exposure to this organism at some previous point in time. It has been variously reported that the sensitivity of these assays is low and may miss anywhere from 30% to as many as 70% of cases of Lyme. There are many reasons for this poor sensitivity. They include Borrelia burgdorferi strain variation, immune complex formation which binds to and thus hides anti-Borrelia antibodies, immune suppression by longstanding infection, and the generally difficult trade-off with serologies between sensitivity and specificity.

Regarding specificity, once positive, these serologic tests tend to remain positive for variable periods, even years, even after treatment. Therefore they cannot be used as a marker for progress during treatment or for success of treatment. If a treated Lyme patient remains seropositive after treatment, does that reflect persistent infection, or just simply left-over antibody? If someone is rebitten by a tick and tests positive, does that positive result reflect antibodies left over from the prior infection, or a new infection from this bite? In addition, some acute viral infections may potentially give a false positive result.

What has been missing until now is a reliable, sensitive and specific direct laboratory test that can indeed inform whether the patient is currently infected. Attempts at using DNA-detection methods (polymerase chain reaction or PCR) have been disappointing. The sensitivity remains very low because of the low number of spirochetes in peripheral blood, urine and spinal fluid, low yield on tissue (biopsy) specimens, the possible presence of inhibitors in blood and tissues, and the issue of which DNA primer set or sets should be used as they tend to be strain-specific: use the wrong strain, and even a clinically obvious infection can be missed due to the notoriously large number of strain variations present and the possibility of genetic shifts common to Borrelia species. Concerns over false positives due to laboratory contamination have been raised as well. Finally, some believe that a positive PCR may not reflect persisting active infection but left over nucleic acid fragments.

How are most other infectious diseases diagnosed? Whenever cultures are available, they are generally preferred over serologic tests. For example, in diagnosing a urinary tract infection, do you test the blood for antibodies to E. coli, or do you culture the urine? The obvious answer also applies to diagnosing infection due to Borrelia burgdorferi (Bb). Cultures are more useful and give more information.

Unfortunately, Because Lyme Borrelia are symbionts, meaning that they need a living host to survive, trying to get them to thrive in vitro has been a nearly impossible task. In addition, they are noted for their very slow growth. Because of these difficulties and delayed growth, Borrelia cultures have not been available for clinical diagnostic purposes until now.

THE BREAKTHROUGH

In developing a rapid and sensitive Borrelia culture, it was necessary to investigate and fine-tune every step of the process. ALS experimented with an unimaginable number of different parameters- incubator temperature, microatmosphere, culture media (and there were many ideas that had to be tested), and even the physical makeup of the culture tubes themselves. Finally, the scientists came up with what appears to be the winning combination, and are incredibly proud to have achieved this technological breakthrough and to be able to offer Borrelia cultures of clinical and research specimens.

THE BORRELIA CULTURE:

Culturing Bb from clinical specimens using our proprietary methods has these advantages:

• By definition, culture is a direct test and if positive, indicates that an active infection was present at the time the specimen was taken

• All known strains of Borrelia burgdorferi sensu lato can be detected

• Can replace xenodiagnoses in many instances

• Culture positivity fulfills even the strict CDC surveillance case definition

• Cultures may be positive even in an infected patient who is seronegative

• A culture that is still positive post treatment indicates ongoing infection

• Advanced methods have resulted in increased yield and decreased turn-around time

• Presently we are only accepting blood for culture. Ability to culture other body fluids and tissues is being explored.

• Will become the new Gold Standard for laboratory diagnosis of Borrelia infection

METHODS:

Blood is collected from patients and transported to ALS at room temperature by overnight express. Specimens are immediately placed into culture media under proprietary conditions, and after one to two weeks it is tested by darkfield microscopy, polyclonal and monoclonal immunostaining, and by multivalent nested PCR (this nested technique is tough to do, but can detect femtomoles of DNA!). If Borrelia are seen then, a final report of a positive result is generated and sent to the practitioner. If no Borrelia are seen at this time, then the sample is placed into Long Term Culture that is looked at once, at two months, and a final report is generated then. Selected positives are sent out for DNA sequencing.

So far, of the experimental samples, nearly all the CDC+, clear cut Lyme cases have been positive, and there have not been any instances of false positives or contamination. Sequencing data have shown that these all are Borrelia burgdorferi, but with wide strain variation.

WHO SHOULD BE CULTURED?

The culture, as the Gold Standard of infectious diseases, should always be considered as the primary diagnostic test. However, the following are just some examples in which culturing is essential: suspected Lyme in a seronegative patient; in those with conflicting serologic results; Lyme patients who remain symptomatic despite prior treatment; co-infected individuals in whom the presence of Borrelia is uncertain; in the newborn who may have received maternal Lyme antibodies; symptomatic Lyme-vaccinated patients in whom a serology may not be accurate; in the immunosuppressed in whom a false negative serology is more likely; in patients with concurrent illnesses that may have given rise to a false positive serology; a patient with a prior history of Lyme who got a new tick bite .

We have found that the success of culturing Borrelia can be increased by following these simple recommendations:

• The patient should not have been exposed to any antibiotics, even those not known to affect this organism, for a minimum of four weeks prior to the blood sample being drawn. Likewise, antibacterial herbs should be held as well.

• Borrelia are more likely to be recovered from patients who are symptomatic at the time of blood sampling.

• The collection kit contains three red-top Vacutainer tubes. They must be filled fully to exclude as much oxygen as possible, and mailed out immediately at room temperature. The tubes should not be spun down.

• Blood must reach the lab within 24 hours of being drawn! The specimen must be sent out the same day it is collected using the FedEx overnight mailer provided.

• A higher yield may be seen if the blood is drawn in the early afternoon, when most infected patients feel especially ill. However, be sure that FedEx will do an afternoon pickup for you.

• Do not send any samples on Friday or Saturday as the lab is not open on weekends.

WHO MAY ORDER THIS TEST?

Based on the laws of Pennsylvania where we are located, it must be ordered by a medical practitioner defined by Pennsylvania as an MD, DO, CRNP, PA-C, and Certified Nurse Midwife. If you are an ND, and even if you may order tests in the state in which you practice, you still will need to have the test ordered by the type of practitioner on Pennsylvania’s approved list. Note that it also cannot be ordered directly by the patient. The practitioner needs to request a blood drawing kit from Advanced Labs, and once the specimen is drawn, it must be received by us within 24 hours.

ABOUT ADVANCED LABORATORY SERVICES, INC.

Advanced Laboratory Services is a CLIA and COLA certified reference lab that offers a variety of quality tests for the detail oriented clinician. ALS consists of two divisions- the clinical laboratory and the research lab.

At the clinical division we focus on both basic as well as advanced testing, including hematology, chemistry, urinalysis, serologies, immunology, cytometry, PCR and histopathology. We also are known for the creation of customized testing panels designed to meet the needs of a busy practice.

The research division supplies a pipeline of new testing services to the clinical lab after they are fully developed. Our recently released Borrelia culture is an example of this.

It is the policy of Advanced Laboratory Services to focus our efforts on perfecting and maintaining the high quality of our testing methods. Accordingly we are not planning to initiate clinical research; rather, we plan to leave that to the clinicians and make ourselves available to assist them in their endeavors.

CONTACT US!
As always, we appreciate your feedback and ideas. It is this type collaborative effort that will ensure that we continue to develop and deliver what is needed as quickly and efficiently as possible. Thank you!

501 Elmwood Avenue, Sharon Hill, PA 19079
Phone: (855) 238-4949 · Fax: (855) 238-4946
questions@advanced-lab.com
http://www.advanced-lab.com/

Sign the Petition - Make A Difference

2012-02-08T14:09:00.001-05:00

(Via lymedisease.org - formerly CALDA) ***Please note that for Canadians simply click your country - it will not allow a Province or Territory.

"Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.

The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.

This is wrong because:

1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;
2. The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and
4. The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.

Sign the petition to urge:

The NGC to remove the guidelines as its listing rules require.

The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease. "

http://www.lymedisease.org/petitionscript/index.php

WHOLE LIFE EXPO 2011

2011-11-21T12:25:00.000-05:00

Come meet members of the Lyme Action Group at the Whole Life Expo this weekend, November 25th-27th.
Visit us at booth 157. The book 'Ending Denial' will be available for purchase.

For more information about the Expo:
http://wholelifecanada.com/

Nicole Edwards' CD Release Concert

2011-03-21T19:13:00.001-04:00

Featuring: Ken Whiteley

Special guest: Scott Merritt

WHEN: Sunday April 17^th

WHERE: Hugh’s Room

2261 Dundas West, Toronto

Open for Brunch: 1pm

CONCERT TIME: 2pm

TICKET PRICE: $15 in advance/$17 at the door

Special message from Nicole: Two for One Special for my Lyme Peers. Just mention lyme when you purchase

your ticket and you'll receive a second ticket free!

Check out Nicole’s music at:

www.cdbaby.com/cd/nicoleedwards5

www.myspace.com/nicoleedwardsmusic

ILADS Conference 2010

2010-10-15T10:12:00.004-04:00

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.

September Extravaganza

2010-08-17T18:04:00.045-04:00

*****THE EXCITEMENT BEGINS ON SUNDAY!*****
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 CanLyme.com. 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.

Turning up the volume / Stage 2

2010-07-27T19:23:00.017-04:00

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.

CBC Radio -- The Current

2010-06-14T11:52:00.010-04:00

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!

Lyme disease awareness

2010-06-05T14:42:00.019-04:00

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.

Niagara Region

Region of Waterloo (Fight the Bite!)

Chattham-Kent in partnership with Rondeau Provincial Park (Lyme Disease: Reduce the Risk, Target Ticks!)

Province of Alberta (Albertans warned)

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).

City of Hamilton (Expanded program includes Lyme disease)

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 10^th 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 12^th 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!

Ending Denial

2010-05-17T15:28:00.021-04:00

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.

May is Lyme awareness month

2010-04-30T11:51:00.015-04:00

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.

IDSA abandons Chronic Lyme patients

2010-04-22T15:44:00.009-04:00

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.

Spring cleaning

2010-04-17T14:00:00.015-04:00

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

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

2010-03-03T09:06:00.005-05:00

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!

Something is rotten in the state of Denmark...

2010-02-04T09:02:00.009-05:00

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.

W5: "Out of the Wild"

2009-11-25T10:15:00.013-05:00

Are you one of the few Canadians who has not watched W5's recent episode devoted to Lyme disease in Canada? If so, you are in luck. The piece, which originally aired on CTV on November 14th, is titled "Out of the Wild: Why some Canadian doctors are misdiagnosing a crippling disease caused by a shape-shifting superbug -- until it's too late".

You can watch the Out of the Wild episode from the CTV video library. The written story can also be found on the W5 website, "W5: Why are crippling Lyme disease cases being misdiagnosed".

This investigative look at Lyme disease across our country focuses on the experiences of 3 patients: Nicole Bottles of Victoria, Ed Sperling of Calgary, and David Leggett of Toronto. Nicole, whose Lyme disease has caused severe memory loss, pain and diminished mobility, has had to find medical support in the United States -- she is still being treated with long-term antibiotics and slowly making progress. Ed's unexplained Lyme symptoms grew so severe, he ended up in a psychiatric hospital and his mother was suspected of causing her son's mystery illness. Fortunately Ed was eventually treated with long-term antibiotics and has successfully recovered -- he is now studying engineering at the University of Alberta. David, a healthy, active Toronto high school principal, was struck down with the disease in 2004 after a camping trip. His doctors flatly denied the possibility of Lyme. The delay in his diagnosis has left him debilitated and bed-ridden. He is unfortunately no longer able to tolerate the aggressive antibiotic therapy that might otherwise have improved his condition.

"In a country like ours, with vast stretches of wilderness, you might think that an illness that can be caught in the outdoors would be a priority for doctors to diagnose." W5's conclusion about the threat of Lyme disease to public health? The medical community has failed to take it seriously. "Thousands of Canadians who are afflicted are often told there is nothing wrong with them, that they're delusional, or psychotic". Lyme disease is most successfully and economically treated when it is caught early. Yet such a timely diagnosis is next to impossible in Canada today, given the lack of reliable testing and insufficient awareness amongst many in our medical community.

"When confronted with symptoms that don't make sense to them, many [Canadian doctors] are likely to turn to what they think is the next likely scenario: their patient is crazy."

Professor George Chaconas, a University of Calgary researcher who has spent the last decade studying the Lyme bacteria, explains the pathogen's ability to evade our immune system and cause a wide variety of symptoms depending on what organ system the infection is affecting. The discrepancy between reported Lyme cases in Canada and US states bordering our country is astounding: while there are little more than 100 cases reported across our entire country, the number is closer to 15,000 in the border states. "The ticks don't carry passports, they don't stop at the border. To think that we don't have Lyme disease in Canada, I think is not realistic."

Jim Wilson, president of the Canadian Lyme Disease Foundation, sums it up this way: "The enemy here is ignorance, it's arrogance...". A Lyme patient himself, he sees hundreds of patients across the country driven to desperation by "woefully uninformed doctors".

Ontario's Associate Chief Medical Officer, Dr. David Williams, acknowledges that our doctors have been slow to realize Lyme is a problem. When pushed by W5 correspondent Paula Todd to explain how that problem should be resolved, Dr. Williams' response led her to conclude it is simply "not a priority" for our medical establishment.

If you think our medical community doesn't have its priorities straight with regard to Lyme disease, why not speak up about it? To get you started, here are links for the Ontario Minister of Health and our Federal Minister of Health. Be sure to contact your own elected representatives as well.

Thank you to the W5 team for their outstanding work, including CTV's Richard O'Regan, Maria Dartis, Paula Todd, and Sandie Rinaldo. Please drop W5 an email to let them know you appreciate their excellent work on this story. And please encourage them to follow up on other Lyme issues: the safety of Canada's blood supply, why our doctors are not better trained to diagnose and treat Lyme, why Canada's medical Colleges are aggressively persecuting the handful of experienced Lyme doctors in our country, and why our health officials continue to rely on a bogus test and misleading statistics.

Now it seems not everyone holds W5's award-winning journalistic efforts in the same high regard. This press release was issued recently by the Association of Medical Microbiology and Infectious Disease Canada (AMMI). The AMMI considers it unfortunate that the W5 story "misleads and confuses the public on this important health issue and besmirches the earnest efforts of physicians and scientists who want to help patients with [Lyme disease]...". Well... Nicole, Ed, and David, and countless other Lyme patients across our country, may have something to say about those earnest efforts too.

The AMMI's position is oddly reminiscent of that from the Infectious Diseases Society of America (IDSA). The IDSA's scientifically indefensible position that Chronic Lyme disease does not even exist (see earlier post IDSA hearing on Lyme - Washington, DC) was so extraordinary, having blatantly disregarded the substantial body of medical research supporting Chronic Lyme, that the Attorney General of Connecticut launched the historic antitrust investigation of the IDSA to find out what on earth was going on. That investigation found many procedural irregularities and conflicts of interest amongst the guideline panelists. It resulted in a completely new panel being assembled and a thorough review of those guidelines. We are hopeful for some constructive feedback from the new IDSA guidelines panel by year end.

The Canadian Lyme Disease Foundation also had a few things so say about the AMMI's recent press release. For your reading pleasure, you can find their rebuttal here.

From the AMMI website: "AMMI Canada exists as an organization with the primary function of representing the broad interests of professionals dealing with human microbiology and infectious disease in Canada." Hmmm... ok. But who is representing the interests of Canada's Lyme patients?

CTV's W5 covers Lyme in Canada

2009-11-09T15:33:00.009-05:00

Program your DVRs, TiVos and VCRs!

W5, the investigative journalism program of CTV, is airing an in-depth story on Lyme disease in Canada this Saturday November 14th at 7pm EST. The 3o-minute segment will feature Canadians from across the country impacted by this devastating disease.

"Out of the wild: Why some Canadian doctors are misdiagnosing a crippling disease caused by a shape-shifting superbug -- until it's too late."

Here is a video preview for the Lyme segment on this episode of W5, featuring Toronto Lyme patient David Leggett.

The program will rebroadcast on Sunday November 15th at 12pm EST.

Don't miss it!

Global's 16x9 digs a little deeper

2009-10-15T13:05:00.014-04:00

On Sunday, October 11th, Global TV's investigative current affairs program, 16x9: The Bigger Picture, aired a story titled "Lyme Disease Lepers". Finally some coverage is being given to the IDSA guidelines controversy and the related intimidation of Canadian Lyme disease doctors -- the reasons why more and more Canadian doctors are afraid to treat this devastating disease. Well done Global!

The story features Lyme disease physicians Dr. Ernie Murakami (who was forced to retire in 2008 by the BC College of Physicians for treating Chronic Lyme patients), and Dr. Jozef Krop (currently being investigated by the Ontario College of Physicians and Surgeons for treating Chronic Lyme disease, in spite of the fact there has not been one single patient complaint against him). The story also tells of the difficulties Lyme patients have in getting a timely diagnosis (delayed diagnosis is a major contributor to developing serious and debilitating Chronic Lyme disease), as related by Lyme patients Robert Manten and Janet Mitchell, due to unreliable Canadian tests and lack of training and awareness amongst Canadian doctors.

Dr. Nicholas Ogden, of the Public Health Agency of Canada (PHAC), makes the following statement on camera: "The interpretation done in some private laboratories in the USA are too liberal and therefore they capture as being positive a lot of people who don't have Lyme disease." This just doesn't jive with findings of the Canadian Lyme Disease Foundation, which has tracked thousands of Lyme patients across the country who were diagnosed with a positive Western Blot test from reputable and fully certified laboratories in the US -- tests interpreted according to stringent CDC criteria -- the majority of these same patients had negative Canadian Lyme tests.

Such statements from Dr. Ogden are clearly a distraction from the real issue that Canadian Lyme tests fail to detect the vast majority of Lyme patients in our country, with devastating health consequences for patients whose diagnosis is therefore delayed. And why do these diagnosed patients respond positively to treatment if, as Dr. Ogden asserts, a lot of them don't really have Lyme disease in the first place? Hmmmm. If you ask one of the handful of experienced Lyme doctors in our country, the Canadian tests don't just fail to detect the disease in its early stages either -- for most people, these tests are not worth the paper they are printed on for any stage of the disease. The PHAC is due some feedback on this subject -- here is a link to the PHAC contact page for our Chief Public Health Officer.

The 16x9 website gives you an opportunity to have your say as well (see Add Your Comments at the bottom of their Lyme Disease Lepers story page). Please keep the comments coming! -- let Global know you appreciate their coverage of Lyme issues and that more is needed to raise awareness.

If you have not already written Ontario's Minister of Health (see recent post Your help is urgently needed!), please take a minute to do so. Our letters have now been updated with the details of our new Health Minister (the Honourable Deborah Matthews). We want to keep these issues front and centre. Together we are making a difference!

Burlington screening of "Under Our Skin"

2009-10-10T10:54:00.015-04:00

********************UPDATE*********************

Note that there is limited parking available on the church property. Bridgman St (adjacent to the church, off of New St) is a good choice for street parking.
We hope to begin the film promptly, given its length, so please come early and make yourself comfortable!

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Back by popular demand! Lyme Action Group is pleased to partner with Sunday Evening Forum to bring another screening of the award-winning Lyme documentary Under Our Skin to Burlington, Ontario.

The Untold Story of Lyme Disease and our Health System
A groundbreaking documentary explores the human, medical and political dimensions of Lyme disease - an emerging epidemic destroying countless lives. This powerful film exposes a broken health care and medical research system unable to cope with a growing terror under our skin. It will open your eyes!

There is No Medicine for Someone Like You
Lyme Disease, caused by bacteria transmitted by an infected tick, manifests with symptoms of virtually all known neurological and autoimmune disorders. The American Centers for Disease Control estimates over 200,000 new cases each year in the USA (more than AIDS and West Nile combined) - the vast majority of which are in close proximity to Ontario. An increasing number of people have the disease in Ontario, and many more may have it, but have either not been diagnosed or have been misdiagnosed.

Date: Sunday November 8, 2009
Time: 7:00 pm
Location: Burlington Baptist Church
2225 New Street, Burlington
(west of Guelph Line - click here for a map)

A suggested donation of $5 at the door is appreciated, with net proceeds supporting the advocacy work of Lyme Action Group. Refreshments will be available following the event. The running time for the film is 103 minutes. Following the film, a question and discussion period will be facilitated by Rob Manten. Robert is a local Lyme patient and founding member of Lyme Action Group.

Here is a film trailer:

For more information about this film, including additional film excerpts, please visit Open Eye Pictures online. Any questions about the event can be directed to Lyme Action Group.

Sunday Evening Forum is a community forum to discuss current issues. For more information, visit the Burlington Baptist Church online. An event poster is available, which you can download and distribute. Please join us November 8th!

Your help is urgently needed!

2009-09-27T21:21:00.013-04:00

As you know, last week at the Wall of Hope event in Toronto, a +1,400-signature petition was submitted to the Ontario Legislature on a number of Lyme-related issues. The government is now required to officially respond to that petition. While this matter is on the Minister's desk, we want to send another clear and strong message to the Minister to let her know what we are thinking. Note that as of earlier this month, we now have a new Health Minister, the Honourable Deborah Matthews -- the letters have been updated to reflect this change.

To that end, Lyme Action has prepared 2 letters that we would like you to send to the Minister. The letters are accessible via the links below in Word format (drop an email to us if you need a different format). Feel free to customize the content of your letters, but be sure to add your own complete name, mailing address and signature before you send it off. The letters can be mailed, cut-and-paste into an email, or faxed.

1. Letter to Ontario Minister of Health re: CPSO
This letter highlights the problem of the College of Physicians and Surgeons of Ontario (CPSO) persecuting Lyme literate doctors. In so doing, the CPSO is interfering with the doctor-patient relationship and threatening our access to treatment. It is written specifically about Dr.Krop (who has not had one single patient complaint against him!), as his investigation is currently before the CPSO. But as you know, this problem impacted Dr. Murakami in BC last year and your doctor could be next!

2. Letter to Ontario Minister of Health re: Bill 171 & Bill 179
Bill 171 deals with mandatory reporting of doctors (by other doctors). We are particularly concerned that the CPSO will misuse the powers of this Bill to persecute doctors involved in using ILADS protocols for treating Lyme, as well as practitioners of alternative and complimentary medicine. Bill 179 proposes to give the Minister further oversight of the CPSO. Given the CPSO's track record in persecuting Lyme doctors, this oversight is long overdue!

Please contact Lyme Action if you have any problems with the above links and we can email the files directly to you. Once you have opened the files linked above, you can save them to your computer by selecting File, Download file as, Word.

Let's make our voices heard on these important issues. You are encouraged to send these letters this week given the time-sensitive nature of both Dr. Krop's investigation and our petition before the Minister.

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

Wall of Hope 2009 - Toronto

2009-09-18T18:13:00.019-04:00

Thank you to all who helped to make Thursday's event a success! Here is a sampling of photos received from attendees. Thanks to those who have sent them in. Please send in your best ones and we can add them to the album.

This post will be updated as more material becomes available. To begin with, here is coverage from the CTV National News as shown Sunday 20 September 2009. The version on the CTV website can be found here (but it doesn't include the intro by Sandie Rinaldo you will see below). And here is the accompanying written report on CTV.ca.

Here is a link to send feedback to CTV -- please let them know you appreciate this coverage.

"They are ticked off, and they want answers..." That is the opening line of an A-Channel News report about the Wall of Hope event in Victoria, BC. Here is an email to contact the BC Ministry of Health Services and let them know what you think about the outdated and misguided information given by Minister Kevin Falcon in this interview. The protocol Minister Falcon refers to is, of course, the IDSA guidelines whose validity were seriously called into question subsequent to the antitrust investigation against the IDSA concluded by the Connecticut Attorney General in 2008. And yet our health agencies continue to cling to these narrow guidelines, completely ignoring other opinions such as those from the International Lyme and Associated Diseases Society (ILADS).

On the day of the Wall of Hope event at Queen's Park, a petition was submitted to the Ontario Legislature regarding Lyme and Chronic Lyme disease issues in Ontario. The petition addresses issues of failing to acknowledge Lyme as endemic in Canada, inadequate testing and inadequate physician training. It was signed by more than 1,400 concerned persons from across the province. The Government of Ontario is officially required to respond to this petition within 24 sitting days of the House. The video below, courtesy of the Legislature's Broadcast and Recording Service, is of the petition presentation in the Legislature.

Wall of Hope 2009 - Toronto

2009-08-19T10:47:00.029-04:00

*************UPDATES******************
Those attending the demonstration may have their choice of a t-shirt or canvas carry-bag (while supplies last), compliments of Lyme Action Group.

We are very pleased to announce that Dr. Jozef Krop (LLMD) and Ms. Helke Ferrie (medical/science author) will be speaking at the event. We will also be making a formal presentation of our petition to an MPP, which will subsequently be read in the Legislature.

Washrooms are available -- ask someone from Lyme Action to escort you to the building.

If you don't need to rush off, please pack a lunch and join us for a picnic on the north lawn (picnic tables available) after 11:30am. And if you still don't need to rush off after lunch, you might want to pay a visit to the Legislature where our petition is scheduled to be read at approximately 1:30 pm!

Remember umbrellas just in case... but let's keep praying for sunshine. ;-) The forecast is looking mighty fine.

Please spread the word -- let's make a strong statement with the number in attendance. See you on the 17th!
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To all who are concerned about Lyme Disease:

Lyme Action Group is pleased to sponsor this year's Wall of Hope 2009 in Toronto. Mark your calendars: Thursday September the 17th. The Wall of Hope is happening once again this year right across Canada. Our Toronto event will begin at 10:00 am on the south lawn of the Ontario Legislature at Queen's Park. This will officially go until 11:30 am.

The purpose of the event is to attract attention to the issues of Lyme disease, and to make medical associations and governments on all levels think about what they are not doing to help us! We need their help. Please come and join us! Bring friends and family who know what daily struggles we go through. Contact your elected representatives (links to the right) and see if they will meet with us in front of Queen's Park. Contact any media source you can and lets make this as public an event as possible. The more people the stronger we are and the stronger the message we will be sending. 2009 has been an extraordinary year for media coverage of Lyme issues -- let's keep the momentum building!

Items needed will be lots of big and readable signage, fliers and anything else anyone can think of! Most importantly we need lots of participation. Lyme Action will have some posters available and a few other surprises for those in attendance! Remember to bring water, snacks and chairs.

If you need transportation (or can help with transportation), directions or other information, please let us know. There is a TTC stop immediately on the south side of the Legislature grounds. We will be gathering on the south lawn (see green arrow on map below). There are a number of paid parking locations in the area, including on King's College Circle on the adjacent University property (west of the Legislature). Please visit the Wall of Hope 2009 - Toronto Facebook page where you will find additional info and can indicate your attendance. See you on the 17th!

View Larger Map

For more information, please contact: Keith Poullos (GTA Lyme Support group) 519-853-0149 or Lyme Action Group. Please note that this is a scent-free event as some in attendance have severe sensitivities.

Lyme Action gratefully acknowledges the Canadian Lyme Disease Foundation for the use of the poster series linked above.

The National Post, Global Television and the IDSA

2009-08-04T15:45:00.010-04:00

The press, the tube, and a medical society on whose reputation aspersions have been cast. What do these three have in common? Well, they were all headlining on the subject of Lyme disease this week. The National Post began a new series about Lyme disease in today's paper. Global Television featured a Lyme story in their Family Health segment on the 6 o'clock news last night. And today the IDSA made the video archive of last week's hearing in Washington DC available through its website.

Debate Over Lyme Disease Lingers On

Diagnosis, Treatment; Canadian doctors hold to existing guidelines while laws change in the U.S.

Today the National Post launched a new series about the mysterious world of Lyme disease. This first article includes interviews with CanLyme President Jim Wilson and retired BC physician Ernie Murakami.

Also quoted is Dr. Muhammad Morshed of UBC, who "regrets" that the recent Lyme doctor protection legislation in Connecticut gained the political support it did. Yes, Dr. Morshed -- that nail-bitingly close (unanimous!) political support -- how did it ever pass?... unanimously passed through each and every stage of the legislative process... making Connecticut the 3rd State to adopt such legislation, following in the footsteps of California and Rhode Island. And then there is New York State, which has implemented a non-legislative solution to the same problem of Lyme doctor harassment by medical boards. Still other States have been implementing improved education and awareness programs.

The National Post columnist of this series is Lia Grainger. Please take a moment to thank her for covering this important subject and tell her what you think. You can reach her via email. Tomorrow's column will focus on the spread of ticks into Canada.

Last night the 6 o'clock Global News featured a Family Health segment about Lyme disease. The piece included interviews with Robert Manten (Lyme patient), Janet Mitchell (Lyme patient), Dr. Jozef Krop (Lyme physician), and Dr. Nicholas Ogden (Public Health Agency of Canada). The video segment is pasted below. You can reach Global's Health Specialist, Beatrice Politi, by email with your comments.

And finally, the IDSA. As promised and right on schedule, the video archive was made freely available for viewing through the IDSA archive website. There is a lot of material to digest here, including widely divergent opinions on both sides of the issues.

Below is additional comprehensive video coverage of last week's hearing, by ABC 7 News in their On Your Side segment.

IDSA Hearing on Lyme - Washington, DC

2009-08-03T13:49:00.009-04:00

Last Thursday, July 30th, 2009, was a historic day. A hearing took place in Washington DC to consider a broad range of medical opinions with regard to Lyme disease. This hearing came about as the result of another historic event -- the antitrust lawsuit that the Connecticut Attorney General brought against the Infectious Diseases Society of America (IDSA). The Attorney General's investigation identified potential conflicts of interest with regard to the original Lyme guideline panelists and serious flaws with the way in which those guidelines were prepared. And in a 2008 settlement, the IDSA agreed to complete a review of its Lyme disease guidelines, including seeking input from a broad range of stakeholders both in written form and through a 1-day invitation-only hearing.

By year end, the IDSA expects to make public its intent with regard to the 2006 Lyme guidelines -- whether they will stand as is, or be modified in part or in whole. The complete video record of the 1-day hearing, which was broadcast live online during the event, is expected to be available through the IDSA website this week. In the meantime, the IDSA is making all of the presentation materials available for download. The presenters included:

Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ PDF
Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA PDF
Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California PDF
Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD PDF
Ben Luft, MD, The State University of New York, Stony Brook, NY PDF
Allison Delong, MS, ILADS & The Center for Statistical Sciences, Brown University, Providence, RI PDF
Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
1. Slides PDF
2. Statement PDF
David Volkman, MD, Nissequogue, NY
1. Slides PDF
2. Statement PDF
Sam Donta, MD, Falmouth, MA PDF
Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT PDF
Brian Fallon, MD, Columbia University Medical Center, New York, NY
1. Slides PDF
2. Statement PDF
Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
1. Slides PDF
2. Statement PDF
Ken Liegner, MD, ILADS, Armonk, NY PDF
Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA PDF
Steven Phillips, MD, ILADS, Wilton, CT PDF
Arthur Weinstein, MD, Washington Hospital Center, Washington, DC PDF
Raphael Stricker, MD, ILADS, San Francisco, CA PDF
Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NYPDF

This hearing has added to the year's already heightened media focus on Lyme disease as an "emerging epidemic", as it has been referred to by the CDC. Below is an example of recent coverage by ABC News. This particular coverage is noteworthy in that the medical correspondent (Dr. Marie Savard) was herself a Lyme patient not long ago.

Here is a press release issued by the International Lyme and Associated Diseases Society (ILADS) regarding the IDSA hearing, titled HISTORIC HEARINGS ON MOST CONTROVERSIAL DISEASE IN U.S., LYME DISEASE: SPOTLIGHT ON A HIDDEN EPIDEMIC.

In a Greenwich Time article published late last Thursday, Connecticut Attorney General Richard Blumenthal said he felt the hearing in Washington, D.C., on Lyme disease treatment guidelines that he helped bring about, was "unprecedented" and set a standard for transparency and fairness in crafting medical recommendations.

An ID Doctor speaks about the IDSA / Lyme

2009-07-20T17:52:00.010-04:00

People who are unfamiliar with Lyme disease, and the medical and political controversy that now surrounds it, frequently ask the question, "How could this possibly be?" In the spirit of a-picture's-worth-a-thousand-words, this column will be uncharacteristically brief. The following video is courtesy of the renowned Dr. Joe Jemsek, of the Jemsek Specialty Clinic. Dr. Jemsek is speaking at the Into the Light, Lyme Disease Awareness Gala, which was held in March 2009. Enjoy.

Ok, just a few comments... ;-) to add a Canadian context. How does this American tragedy affect us on this side of the border? Well, you take Health Canada's bogus statistics for Lyme disease and our seriously flawed Lyme tests. Then add the IDSA's 2006 Lyme treatment guidelines, which declares Chronic Lyme disease to be all in our heads. Add to that the CDC announcement that Lyme is an "emerging epidemic" in the US. What do you get? At best, you get a confused Canadian medical system that's faced with some conflicting input. At its worst, you get Canada's regulatory Medical Colleges declaring war on the handful of Canadian doctors actively involved with treating Lyme disease -- and the Colleges are not answerable to anyone for their obscene actions.

At least 3 cases of heavy-handed actions by Medical Colleges have been publicized to date. First was the now late Dr. Philip Williams, whose treatment of Lyme disease was restricted by the CPSO in 2004. Then in early 2008, the CPSBC forced Canada's Lyme disease guru, Dr. Ernie Murakami, into retirement with the threat of removing his licence. Most recently, Dr. Jozef Krop had the files of 20 of his Lyme patients seized by CPSO investigators in October 2008 -- that investigation is ongoing in spite of the fact there had not been one patient complaint against him. Sound like the sort of environment that will encourage doctors to seriously consider Lyme disease in their differential diagnosis?

Lyme disease established in New Brunswick

2009-07-20T09:55:00.009-04:00

More Lyme in the news. This piece aired on CBC New Brunswick on July 15, 2009.

In the northern Saint John community of Millidgeville, an established breeding population of ticks was identified last spring. That means higher numbers of younger nymph ticks will be present -- about the size of a poppy seed, they are much harder to see than adult ticks, but capable of carrying and transmitting Lyme disease.

Limited surveillance has revealed that 20% of the Millidgeville-area ticks are positive carriers of the Lyme bacteria. That's twice the supposed national average of 10%. Such limited surveillance has been done throughout our country, with most of that being passive surveillance (when ticks are voluntarily submitted by veterinarians and doctors for analysis), it's difficult to put much credence in these numbers -- passive surveillance will, at the best of times, tend to significantly underestimate the real numbers. The reality is, in spite of our health authorities' continuing characterization of Lyme as a new and emerging illness in Canada, everywhere they look they are finding it! Ask the patients that have been misdiagnosed and battling this illness for decades -- this disease has long been present in every province of our country.

And it's all well and good that continued efforts go into studying tick populations (a similar study to the one in Millidgeville is taking place this summer in the Wainfleet Bog area of the Niagara Peninsula of Ontario). But when will action be taken to improve the quality of Lyme testing available to Canadians? According to the handful of Lyme-literate physicians across the country, Canada's Lyme tests are not worth the paper they are printed on. Very few Lyme patients test positive with Canada's Lyme tests -- most are forced to pay out-of-pocket for tests from specialized tick-borne illness labs in the US. Early detection and treatment is absolutely critical in successfully treating this potentially devastating illness -- that early detection is next to impossible right now in Canada. Delayed diagnosis greatly increases the chance of developing serious chronic illness.

When will action be taken to ensure the safety of Canada's blood supply? Canada is one of the few western nations that does not currently screen its blood supply for Lyme disease! Several published studies have demonstrated the ability of Lyme bacteria to survive in treated blood products for up to 48 days.

When will action be taken to better train our doctors, so that patients are not faced with the all-too-frequent "we don't have Lyme disease here"? This happened in a southern Ontario community just a few weeks ago! And that was in spite of a Public Health Advisory about Lyme disease issued a few months prior in the same region. Our doctors are our first line of defence -- and those defences are currently down!

When will action be taken to provide meaningful public awareness? The public continues to be largely unaware of the risks for Lyme disease. While truckloads of money went into publicity campaigns for West Nile Virus -- a disease that impacts in the order of 1,000 people a year in North America -- next to nothing has been done to raise awareness of Lyme disease. The CDC now estimates in excess of 200,000 new cases of Lyme disease annually. And do you know where the vast majority of those cases are? In close proximity to the borders of Manitoba, Ontario, Quebec, New Brunswick and Nova Scotia!

So the numbers in this news report suggest that 1 in 10 ticks in our country are carrying Lyme bacteria. The list of known endemic areas continues to increase in length. The recent Canadian Medical Association Journal article clearly documents the presence of ticks throughout the country. And yet Health Canada continues to report bogus numbers of only about 50 cases of Lyme a year in Canada. But of course those numbers are based on Canada's bogus tests. There are thousands of Lyme patients across the country that are not counted in Canada's stats for Lyme because their Canadian tests were negative. When will Health Canada give its collective head a shake? When will our medical community get past these numbers? -- treat the patients, not the labs.

If you or someone you know has been on the Great Canadian Lyme Adventure, please make sure your elected representatives know about it. Write to your local paper. Write your Minister of Health. The status quo is simply not good enough. Something's gotta change.

Ten days and counting...

Cor Blimey, Guv'nor!

2009-06-22T08:29:00.018-04:00

CT Governor signs Lyme doctor protection Bill into law.

On Sunday amidst little fanfare, Connecticut Governor M. Jodi Rell signed Bill HB6200 into law. Earlier this year the Bill received unanimous support from the Health Committee, which introduced it to the House. This was followed, with but minor revisions along the way, by the unanimous support of both Houses of the Connecticut General Assembly. It will now come into effect next month on July 1, 2009.

In what we hope will be a strong message to the Infectious Diseases Society of America (IDSA), which continues in its heavy-handed attempt to shut down the conversation surrounding Chronic Lyme, this Bill clearly comes down on side of patients, their freedom to choose treatment, and doctors' freedom to exercise their clinical judgement.

To illustrate the IDSA's persistent attitude on this subject, check out this recent exchange printed in the British Journal of Medical Ethics (JME). A few months ago, a piece appeared titled "Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process", in which Johnson and Stricker outlined the reasons why the IDSA now finds itself in the position of having to review its 2006 Lyme disease guidelines with a completely new panel. In May 2009, IDSA President Anne Gershon submitted a reply to the JME in which she continues the Society's spin (you know the drill, but to paraphrase: Chronic Lyme doesn't exist, long-term antibiotic treatment is ineffective and dangerous). It is quite astonishing that she would put such statements in writing given that the guidelines review process is still in progress! Or are we to surmise from her comments that the outcome of that review has already been determined...? Well, the responses to President Gershon posted by the JME were not pretty (quite good reading, but not pretty).

This is the very stuff that got IDSA into trouble in the first place. The 2008 post-investigation press release from the Connecticut Attorney General's office states it clearly: The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus". Let's hope this is not déjà vu all over again. Time will tell.

Mark this date on your calendar: July 30, 2009. That's the date of the IDSA's "open" public hearing in Washington, DC (you know... the open public hearing that the public cannot actually attend). The IDSA has promised to broadcast that hearing live via their website.

While some have attempted to misrepresent Connecticut's new Bill as an ill-advised attempt to "legislate medicine", it is quite the contrary -- it does not tell doctors what they have to do (unlike the IDSA guidelines), but rather protects their freedom to use their judgement without undue interference from regulatory bodies. Governor Rell had this to say about the Bill: “Doctors in Connecticut – the absolute epicenter of Lyme disease – can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected. The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.”

Here is the press release from the Lyme Disease Association, and brief coverage from HersamAcorn.com.

Please let your elected representatives know about this exciting development in Connecticut, which now follows similar legislation in California and Rhode Island, in addition to the non-legislative approach implemented by New York. Canada's Lyme doctors continue to be harassed by our medical colleges. Many doctors will not treat Lyme patients for fear their licence could be in jeopardy. This needs to stop.

Three cheers for Guv'nor Rell!

Tracking Lyme disease in Canada

2009-06-08T19:55:00.014-04:00

CTV News: Avis Favaro covers the rise of this infectious disease.

"Lyme disease is moving its way into new parts of Canada but the government is not doing enough to track it or to teach doctors how to diagnose it, says a new report."

"The painful and debilitating affliction known as Lyme disease is spreading in Canada and with the summer outdoor season about to get into full swing, doctors are being asked to report even suspected cases to help health officials track it."

For the compete article visit CTV.ca online. A video report, which aired Monday June 8, 2009 on CTV National News can be viewed here.

A related piece by the CBC is titled Lyme disease spreading in Canada, researchers find. Here are links to a CBC video report in Real Media and QuickTime formats.

A report this week in the Canadian Medical Association Journal titled The emergence of Lyme disease in Canada outlines the increase in Lyme endemic areas across our country. While there is really nothing new here from the perspective of the Lyme community (there have been Lyme patients suffering in every province of the country for years), it is nice to see some acknowledgement of the problem from medical officials.

Please ask your elected officials what will be done to teach our doctors how to diagnose this debilitating disease.

Lyme Action in Elora

2009-05-30T21:58:00.009-04:00

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

2009-05-30T08:52:00.005-04:00

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!

Magnotta and CanLyme take to the airwaves

2009-05-20T15:46:00.013-04:00

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.

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

2009-05-02T10:50:00.020-04:00

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.

Brooke Landau's story from San Diego 6

2009-05-01T17:32:00.014-04:00

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.

CT Lyme bill passes with unanimous approval!

2009-04-30T17:28:00.017-04:00

The Connecticut Lyme bill received unanimous approval in that State's House of Representatives today. The bill is designed to protect doctors who treat Lyme disease and, in particular, Chronic Lyme disease. Introduced by State Representatives Kimberly Fawcett and Jason Bartlett, the bill also received unanimous support from the State's Joint Committee on Public Health in an earlier vote.

The bill has the support of the Connecticut State Medical Society, although not from its Department of Public Health.

Today's vote in the House of Representatives brings the bill one important step closer to becoming law. It is a shame that medical systems should become so broken that legislative solutions would seem to be the most efficient way of addressing such issues -- perhaps this is what is needed in Canada. Connecticut may soon join the ranks of New York and Rhode Island, which already have Lyme doctor protection laws in place. The bill now moves on to the Senate.

"I had no idea what last July was going to present to me when my husband was diagnosed with a life threatening case of Lyme disease," said Rep. Fawcett.

State Representative Jason Bartlett has made this his cause because his mother has Chronic Lyme disease.

For the full story, see this article on News Channel 8, wtnh.com. Below is a video report from News Channel 8 as well.

Here is another well-written piece from The Connecticut Post. "[The bill] comes down on the side of people who suffer from Lyme in this big debate," said state Rep. William Tong, D-Stamford, a bill co-sponsor. "It says the scientific community can have that debate, but we're not going to let anybody else go without treatment."

Debate: Now there is a concept to contemplate; not medical Colleges shutting down doctors who are trying to help those suffering from Chronic Lyme disease; not the IDSA summarily ignoring the more than 19,000 articles in medical literature that demonstrate the persistence of Chronic Lyme infections; not Health Canada revising Canada's Lyme disease guidelines without the highly qualified leadership of the Canadian Lyme Disease Foundation; not Health Canada sticking by Lyme tests and a National Case Definition that have been shown to be seriously flawed. Medical progress should not be defined by what big pharmaceutical dollars call progress. The medical community needs to get to a place where it can have a meaningful conversation about emerging medicine and competing ideas.

Lyme Research in Canada!

2009-04-06T09:18:00.015-04:00

The first-of-its-kind independent Lyme research facility opened its doors amidst great anticipation at the Columbia University Medical Center in northern Manhattan, NY, back in early 2007. Columbia's Lyme and Tick-Borne Diseases Research Center was established as "the first academic research center in the [United States] to focus multidisciplinary research on Chronic Lyme disease", under the direction of the highly respected Brian Fallon, MD, MPH. The Center's website includes information on their latest research and extensive patient resources.

Yesterday the official opening of the Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society was announced on CanLyme. Hat's off to Dr. Murakami. Considered by many to be Canada's foremost Lyme doctor (he has taken more than 20 Chronic Lyme patients out of "permanent" wheelchairs!), he is no stranger to the Lyme controversy -- see Dr. Ernie Murakami, MD on CBC Television.

The full announcement about the new research centre follows:

It is with great excitement that we announce the official opening of the Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society. It is Dr. Murakami's life work to make a difference for those suffering with Lyme. Up until now, Dr. Murakami has been fighting this fight as a lone doctor. Now he has a Society to fall back on, representative of all he believes in. He is the founder and president of this society. This will now be his lasting legacy.

The Society is registered with the Government of Canada as a Not-for-profit Society. It is currently run by a board of nine directors. There is a good line up of experiences within the board members to assist in achieving the goals of the Society. As the Society is a not-for-profit organization, it relies heavily on donations, grants and outside funding. The society website has been set up to accept donations from anyone interested. Memberships are also available, for those who are able, which will allow them to be part of the Society and assist with fundraising activities and efforts.

Up until now, Dr. Murakami has been funding his efforts on his own. As all of you know, he does all of his communications with sufferers au gratis. We hope you will join the official Society of Dr. M in some way, shape or form that suits you best. The first priorities of the Society is to advance the research efforts as quickly as possible. There is a plethora of information and data that has been gathered from patients just like you. This information and the work of cooperative laboratories will fuel the truth forward.

We are looking forward to a positive future and some exponential changes for those with Lyme and co-infections. Please visit the Society website and bookmark it. We hope you will be able to help out anyway you can. http://www.murakamicentreforlyme.org

Any questions or problems with the site, please contact me directly at info@murakamicentreforlyme.org

Sincerely yours,
Melanie Lauren
Forum Admin
Marketing, Media and Fundraising Director
Dr. E. Murakami Centre for Lyme

Update on CT Lyme bill

2009-04-02T14:38:00.005-04:00

Here is an update on the Connecticut Lyme Bill we told you about in February (see The poli-ticks of Lyme), where State Representatives Kim Fawcett and Jason Bartlett introduced a bill to protect Connecticut Lyme physicians.

Fawcett, whose husband battled to get treatment for Lyme disease last year, had this to say: "[A perception] that a lot of doctors out there maybe just think, Lyme Disease, I don't want to get involved in it. So what they do is deflect to their patients, 'I can't really treat you here, you have to find a specialist.' Our legislation doesn't say what they do. It just gives them the freedom to diagnose clinically and treat how they see fit."

This clip is from News Channel 8, as posted on WTNH.com.

Lyme film at Toronto Total Health Show... and much, much more!

2009-03-26T15:53:00.032-04:00

A screening of the award-winning Lyme documentary Under Our Skin will take place at North America's premier natural health show in Toronto this April.

Date: Sunday, April 19, 2009
Time: 4:00 - 6:00 pm
Location: Room 203, Metro Toronto Convention Centre, North Building. Admission to the film is free for those attending Total Health 09 (as a minimum, a Total Heath Sunday "Lecture Pass" is required to attend the film).

This highly acclaimed US documentary reveals the untold story of the massive spread of Lyme disease throughout North America - "an emerging epidemic larger than AIDS". It has been discovered, that up to 50% of patients with multiple sclerosis and other neurodegenerative disorders including autism, Parkinson's, ALS, as well as chronic fatigue and fibromyalgia may actually have Chronic Lyme disease from a tick bite. It's detectable, treatable and reversible, even in its chronic form, yet thousands are suffering from misdiagnosis.

Also at the show, Jozef Krop, MD, will make two Lyme disease presentations. Dr. Krop, known internationally for his pioneering work in Multiple Chemical Sensitivity, is trained to treat Chronic Lyme disease by the International Lyme and Associated Diseases Society and has many years experience with Ontario's victims of Chronic Lyme. You can visit Dr. Krop at Booth 904 (with KOS Publishing). His presentation details are below:

Lyme Disease: It's Treatment and Politics
Saturday, April 18, 4:00 - 5:00 pm, Room 203
Sunday, April 19, 3:00 - 4:00 pm, Room 203 (immediately before the film)

Dr. Krop will speak about internationally validated diagnosis and treatment protocols and what we all must do to persuade provincial and federal governments to take this growing epidemic seriously. Lyme contamination of the blood and organ donor supply is a potential public health disaster. In Canada, there is no effective screening or treatment for Chronic Lyme disease. The Ontario College of Physicians and Surgeons does not recognize international diagnostic and treatment protocols and intimidates physicians willing and trained to treat Chronic Lyme disease.

And last but not least, from the author who brought us "What Part of No! Don't They Understand? Rescuing Food and Medicine from Government Abuse", medical science author Helke Ferrie of KOS Publishing will launch her new book at this year's Total Health Show: "Chronic Lyme Disease in Canada - The Persecution of Doctors Able to Treat It and the Denial of Treatment Choice to Patients". Don't miss the launch of this much-anticipated book that's sure to become an important Lyme reference. Revised and updated in September 2008, Ms. Ferrie's previous book can now be downloaded free of charge from the KOS website.

You will be able to meet Ms. Ferrie and members of Lyme Action Group at Booth 904 in the Exhibit Hall.

BC's College vs Cubberley -- Round 2

2009-03-04T14:30:00.010-05:00

The gloves are off...

You will recall that in December we told you about MPP Cubberley's feisty letter to the BC College of Physicians and Surgeons -- the original post is linked here. In addition to several important criticisms and strong points raised by Mr. Cubberley, he offered to share with the College several case histories, personal stories of the devastation faced by Lyme patients in BC. The College responded. "The [Executive] Committee has respectfully declined your offer." Pretty much sums it up. We wouldn't want real life medical experience to interfere with medical policy now would we?

Seems the College's response did not sit well with Cubberley, and he was prompted to try once again to get his message across. Here are some highlights from his letter dated March 2nd:

"Your letter did not respond to the substance of mine, and you did not comment on the disparity between your position on Lyme diagnosis and that of the BC CDC and the Ministry of Health. This is a significant problem for patients in BC, because the College's guidelines determine whether and when patients with Lyme are diagnosed and effectively treated. If these guidelines are flawed (as your advice about rash and test indicate they are) many patients will not receive diagnosis and the medically necessary care they're entitled to. If doctors are uninformed about Lyme symptoms, causes, and the unreliability of tests like the ELISA, they are more likely to diagnose Fibromyalgia, MS, CFS or any of a number of other illnesses sharing some symptoms with Lyme. These diagnoses would all miss the opportunity to treat Lyme infection effectively in its early stage when it's most curable."

"I would urge that, in the public interest, the College distance itself from the many scientifically unsupported components of the 2006 IDSA guidelines, and that it mandate made-in-Canada guidelines formulated from fair consideration of all scientific evidence -- including the clinical practice experience of physicians who treat Lyme beyond the existing guidelines."

"In the public interest..." Wow, what a concept! Such an approach could revolutionize medicine as we know it.

For your reading enjoyment, here are links to both the College's letter and Mr. Cubberley's subsequent reply.

Thank you Mr. Cubberley. Here is his email should you wish to send a brief note of encouragement for this excellent work on behalf of the Lyme community.

Have you shared your Lyme experience with your elected representatives yet? Yours might just be the story that gets another politician on our side. We need more brave souls like Mr. Cubberley. Together we're making a difference. Please write today!

Signatures and stuff

2009-02-20T13:31:00.004-05:00

Back in November you will recall we announced a petition to be directed to the Ontario Legislature (you can read the previous post here, complete with the full text of the petition). The response has been tremendous, with over 700 signatures collected to date. Thank you and please keep them coming! If you would like a copy of the petition to gather signatures in your area, please drop us an email -- we'd be happy to send you a copy. Remember that this petition is directed to Ontarians as it's for our provincial legislature, and it needs to be signed in person (no electronic signatures).

The screenings of the award-winning film Under our Skin have been a great success. The requests for additional screenings continue to pour in. While we are working on that, we would like to extend an invitation to you -- if you know of a suitable venue (with projector, DVD player, big screen and sound) and have a target audience, please contact us and we'll do our best to work with you to make it happen. Lyme Action has purchased a version of the film with community screening rights for a variety of settings.

Lastly, a thank you to the many who are supporting us financially. Your gifts are an important contribution as we continue to increase awareness and lobby our government officials for improved Chronic Lyme disease public policy in Canada. Please consider making a donation today. Secure donations can be made through the PayPal link on this site. Donations to Lyme Action Group can also be made at any TD Canada Trust branch.

Together we are making a difference!

Half Million Dollar Donation to Lyme Research in Canada

2009-02-10T14:08:00.007-05:00

Some amazing news to share -- yes, on our side of the border even.

In a press release put out today, the Canadian Lyme Disease Foundation (CanLyme) has announced receipt of a half million dollar donation toward their goal of establishing an independent Lyme research facility in Canada.

The donation was made anonymously by a family that had 2 members afflicted with the illness -- and went through the same nightmare faced by most Lyme patients in Canada.

“This family struggled within the Canadian health care system, as are thousands of Canadians, and were let down by poor testing and a false confidence within the medical community that Lyme disease is rare in Canada. The medical leadership in Canada, including the federal and provincial governments are letting us down. Doctors and patients are not told of the serious limitations of the tests used - limitations acknowledged by the global science community.”

You can read the complete press release here.

The poli-ticks of Lyme

2009-02-09T14:41:00.006-05:00

Now if we are completely honest, how many of us with Lyme disease haven't secretly wished for a politician to get sick with this illness? Not wishing anyone harm of course, but just maybe things would change then, right? Well, in the do-ya-one-better category, how about when the spouse of a prominent politician gets sick with this devastating tick-borne illness? Seems someone's wish came true.

In the good ol' State of Connecticut, no less, the husband of State Democrat Kimberly Fawcett became sick with Lyme disease last summer, according to an article in the Stamford Advocate (State joins Lyme debate). But the standard 3-week antibiotic treatment didn't cure him and he soon relapsed. When he sought additional treatment for Lyme disease, he was told to find another doctor! They were forced to travel out-of-state to find someone willing to take on the case.

In response, Fawcett has introduced a Bill "that will extend protections to doctors needed to allow them to freely diagnose and treat patients with Lyme disease. The bill will allow doctors treating Lyme disease patients to diagnose the disease clinically and consider all treatment options, including long-term antibiotic therapy." For a complete press release from the House Democrats website, see Representative Fawcett Champions Lyme Disease Legislation).

If you would like to send a note of thanks and encouragement to Fawcett, here is the address at her Hartford office.

Sadly, there is no similar good news to report on this side of the border with our neighbours to the south. While the Public Health Agency of Canada has finally initiated a review of our Lyme guidelines, they have so far neglected to include the Canadian Lyme Disease Foundation (CanLyme) in that process. There are several knowledgeable Lyme-literate doctors on CanLyme's board of directors. The idea that Public Health is proceeding without their direct up-front involvement is beyond words and leaves great doubt as to the meaningful outcome of their efforts.

"We have clinical expertise and evidence-based peer-reviewed science that needs to be interjected into the process, that is being ignored or not given due consideration in an open transparent forum," writes CanLyme President Jim Wilson. He has asked all those concerned to "write to the Minister of Health urging her to insure the Canadian Lyme Disease Foundation's representatives get included in any and all discussions, panels, committees, or focus groups funded all or in part by the Public Health Agency of Canada to do with tick-borne disease." Here is a link to contact our Federal Minister of Health. He further suggests copying your email to your local MP.

To the husband of State Democrat Kimberly Fawcett, we are pleased to hear you are getting appropriate treatment and wish you a full and speedy recovery. To our Public Health representatives... well, you can make your own wish for them.

"Under our Skin" - Polski GTA

2009-02-06T18:15:00.008-05:00

Lyme Action Group is pleased to announce that a special screening of Under our Skin, the award-winning Lyme documentary film, has been organized for the Polish community of the Greater Toronto Area.

Ok, before you ask, no -- Open Eye Pictures has not released a multi-lingual version of the film. Not yet anyway. The film itself, will still be the English version. However, the introduction and discussion following the film will all be conducted in Polish and hosted by Dr. Jozef Krop.

A quick plug to add in here. If you know of a group that would be interested in seeing this film (a school, church, club, etc.), please contact Lyme Action and we will do our best to work with you to make that happen. We have purchased a version of the film that allows us to do community screenings in a variety of settings.

If you know Polish, please read on!

Środa, 11 lutego, 2009
Godz. 19:00
Związek Narodowy Polski w Kanadzie
71 Judson Street, Toronto

"Parksinson, Alzheimer, stwardnienia rozsiane, schizofrenia, depresja, a może ukąsił cię kleszcz i masz boreliozę?"

Zapraszamy całą Polonię na spotkanie poświęcone groźnej chorobie o nazwie borelioza lub Lyme disease.

Wstęp wolny. Prosimy o donacje na Lyme Action Group.

Lyme article in Vitality's February issue

2009-02-04T09:33:00.010-05:00

Hot off the press! Check out the excellent Lyme article in this month's Vitality Magazine. The piece, by medical science author Ms. Helke Ferrie, is subtitled "An Emerging Epidemic with No Effective Means of Treatment in Ontario".

You can access the complete article at VitalityMagazine.com -- look for print editions at your local health shop.

You should be aware of some important correspondence that Lyme Action sent off last month. Helke does a nice job of introducing these letters in her article. Once we have ascertained how they are being received, we'll share more info about them with you. But to begin with, last month we wrote to the Ontario Attorney General, the Minister of Health, and the Premier, presenting our arguments and suggesting it would be highly appropriate for us all to sit down together and talk things through. Please consider writing them yourself and demanding the same -- their respective contact pages are hot-linked above.

Here is the concluding section of the Vitality Lyme article:

THE CHALLENGE AHEAD

Invariably Lyme patients and doctors will ask, “How is this possible?” Some years ago, exasperated by the problems then facing environmental illness patients, I asked the same question of criminal lawyer Michael Code, then of Sack Goldblatt Mitchell and now a professor at Osgoode Hall. His reply was: “It is not necessary to understand the motive for a crime. It is only necessary to prove that it is a crime.”

To stop this crime it is necessary to be correctly informed. The sources given below provide the best available information. Once you are informed, join the efforts of Lyme Action Group and CanLyme by writing to your MPP and demanding action. Canada cannot afford another blood scandal or another SARS crisis. In Ontario, patients and doctors alike cannot be expected to endure the policies of antiquated regulatory agencies that ultimately ruin human lives.

Also, Ontario’s Regulated Health Professions Act must become patient-centered and research-user-friendly for doctors and reflect what Health Minister Caplan was reported to have said in the Toronto Star last November: “I want to support a health-care system that allows people to... try new things. Innovation should be the hallmark.”

Lyme Action Group summarized the Lyme Disease crisis best when they wrote in their January 14 letter to the Attorney General: “This untenable situation ensures that the lowest common denominator of medical knowledge will continue to maintain a correspondingly low standard of innovation, and Chronic Lyme Disease patients will have to continue seeking help abroad. We feel, this is an intolerable situation for patients and for society.”

Burlington screening of "Under our Skin"

2009-01-14T16:38:00.041-05:00

Lyme Action Group is pleased to sponsor a screening of this award-winning documentary film in Burlington, Ontario.

Date: Friday January 30, 2009
Time: 7:00 pm
Location: Compass Point Bible Church - Eaglesfield Campus
2501 Eaglesfield Drive, Burlington
(east of Dundas and Brant Streets in Burlington)

Following the film, a discussion will be held with Dr. Jozef Krop, MD, and Lyme Action Group.

Admission is free (donations will be accepted). For a map and directions click here. Refreshments will be available following the event.

This eye-opening film investigates the untold story of the massive spread of Lyme disease throughout North America. The American Centers for Disease Control estimates 200,000 new cases of Lyme disease each year in North America -- that's more than AIDS and West Nile Virus combined. Lyme disease manifests with symptoms of virtually all known neurological and autoimmune disorders including MS, ALS, Alzheimer’s, Parkinson’s, chronic fatigue, arthritis, fibromyalgia, and autism. Delayed diagnosis results in chronic illness. Chronic Lyme disease is detectable, treatable and reversible, yet thousands are suffering due to misdiagnosis. In Canada there is no readily available effective screening or treatment for Chronic Lyme. For one of the most powerful human rights stories of the decade, do not miss this event.

Check out this trailer to get an idea of the magnitude of this powerful film:

Here is a link to download a poster for the event (pdf, 11x17", 2 MB).

For more information about this film, including additional film excerpts, please visit Open Eye Pictures online. Any questions about the event can be directed to Lyme Action Group.

Here is a welcome message from the Mayor of Hamilton.

Congratulations to our raffle winners!

2009-01-14T14:46:00.008-05:00

Over the last few months there have been a number of raffles held to raise funds in support of our advocacy efforts. Thank you to everyone who supported us so generously -- it is much appreciated. These funds allowed us to distribute informative brochures at the recent Health Expo in Toronto, as well as organize community screenings of the award-winning Lyme documentary Under our Skin.

Most of these raffles were based from the Meadowvale Court Health Centre in Mississauga. A sincere thank you to the Health Centre for supporting us in that way. Thanks also to everyone who worked so hard selling tickets.

Our winners are listed below. Congratulations to you all!

The gift basket was won by Mrs. Sheila Harrison of Newmarket.
The afghan was won by Mrs. Betty Jean Steels of Unionville.
The gingerbread house was won by Ms. Bev Randle of Bolton.
And the winner of 2 front row gold seat tickets to see the Maple Leafs play the Florida Panthers was Mr. Carlo Pavan of London.

CT Attorney General versus the IDSA

2009-01-01T10:07:00.032-05:00

Back in 2006, the Infectious Diseases Society of America (IDSA) published new practice guidelines for Lyme disease. These caused a bit of a stir in that they blatantly disregarded the significant body of scientific evidence relating to Chronic Lyme disease. In effect, the IDSA took the increasingly untenable position that Chronic Lyme did not even exist. This was devastating to the Lyme community, providing the insurance industry with just what it needed to further marginalize Lyme patients.

The position taken by the IDSA was so incomprehensible, that the Attorney General (AG) of the State of Connecticut took the unprecedented action of investigating the IDSA. The result? The State's antitrust investigation concluded that there were "serious flaws" in preparing the guidelines. In a May 2008 press release, the AG stated "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding Chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science." In an agreement reached with the IDSA, a new conflicts-free panel will be convened to review the guidelines. The new panel will be selected by a mutually-agreed-upon ombudsman. None of the original panelists will be permitted to participate.

Good news, right? Well, in spite of the investigation's successful outcome, the IDSA continues to downplay the whole event, maintaining their process is both "rigorous and transparent". But consider the following. In March 2008, the IDSA lobbied against a bill that would promote improved Lyme prevention, education, treatment, and research activities. Why? Because of "the bill's repeated references, overt and implied, to a condition that has been described inaccurately as 'Chronic Lyme disease'." The position in their letter to the US Senate is abundantly clear -- "the notion that some spirochetes can persist despite conventional treatment courses... is microbiologically implausible." Contrast that with this statement from ILADS: "There is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete." Somebody's out to lunch here.

And reading the IDSA's May 2008 press release, coinciding with the one from the AG's office, one could be forgiven for concluding these two press releases are referring to completely different events. Despite the clearly stated criticisms by the AG, the IDSA denies any wrongdoing whatsoever, and looks forward to putting to rest these "unfounded" assertions. You are encouraged to visit the press release on the IDSA's website, as it provides a convenient opportunity to give your opinion about what they are doing -- just scroll to the bottom of the page and click the score of your choice. You can even add a comment... vent a bit, you'll feel better for it.

Finally, just in December, Infectious Disease News (a medical newspaper for Infectious Disease Specialists) included Settling of the Lyme case with the Connecticut AG in it's Top 10 stories of 2008. In reference to the pending rework of the guidelines, the newsletter's Chief Medical Editor says "I don't expect [the reworked guidelines] to be significantly different...". Nice to see more of the "rigorous and transparent" attitude reflected in this publication.

Ok -- that's all in the United States. What's that got to do with Canada? Quite a lot actually. In the absence of substantive Lyme guidelines in Canada, our medical establishment relies heavily on US guidelines such as those from the IDSA. In correspondence between CanLyme and Canada's top Public Health Officer this past autumn, Public Health's Dr. Butler-Jones states "It is my understanding that the [IDSA] guidelines remain in place during this review process, and we should not prejudge any of the conclusions." So in spite of "serious flaws" in their preparation, the best advice to our medical community is to stay the course; in other words, for now we'll keep letting Canadians fall through the cracks in our medical establishment.

A new glimmer of hope has appeared recently. In subsequent correspondence from Dr. Butler-Jones to several Lyme patients, his more recent talking points have changed somewhat. He now states "The Public Health Agency of Canada is currently drawing up a structure for writing and reviewing revisions to the original guidelines, as recommended by the report of the 2006 meeting." This is in reference to the National Lyme Disease meeting held in 2006 in which CanLyme representatives participated. The Public Health Agency of Canada has neglected to follow up on this conference's recommendations to date. Very similar wording is found in recent correspondence from our new Federal Minister of Health, the Honourable Leona Aglukkaq. The letters do commit to a process to include opinions of stakeholders and advocacy groups. This is critical for its success -- otherwise it is likely we will simply see a repeat of what happened with the IDSA in 2006. You are encouraged to write to both our Chief Public Health Officer and the Federal Minister of Health to make sure this happens in a meaningful way.

Here is hoping that 2009 holds good health for us all, and that we will finally see much needed change in our medical system with regard to Lyme and Chronic Lyme disease.

Happy new year!

BC's College of Physicians & Surgeons gets a talking to

2008-12-22T09:18:00.019-05:00

A Christmas present just in time for the holidays -- last week, a member of the BC legislature (Mr. David Cubberley) sent a strongly worded reprimand to that province's College of Physicians & Surgeons (CPSBC). The letter was spurred by the glib attitude toward Lyme disease reflected in a quarterly bulletin distributed by the College back in October.

In his letter, Mr. Cubberley writes "[the bulletin] reinforces the prevailing lack of awareness among BC doctors. The [diagnostic] approach recommended actually contradicts the policy of the BC Ministry of Health and the BC Centre for Disease Control...". He goes on to note the College's failure to even mention the primary Lyme symptoms of which doctors should be aware, and that the College "compounds the harm to Lyme sufferers by perpetuating the claim that Chronic Lyme disease 'remains controversial', meaning that it may not exist. This equates to a life-sentence for anyone undiagnosed in the early stages (which is virtually everyone contracting Lyme in BC today)..." Well said.

You can read both Mr. Cubberley's letter and the CPSBC newsletter from the embedded links (pdf format). Those in the Lyme community may find themselves uncontrollably cheering as they read this well-written letter to the College. Gradually there are more of our elected representatives in our corner. Keep working on yours.

Virtute et Veritate (from the CPSBC logo)... Maybe the College will find some of this in their stocking this Christmas. This is the season of hope after all.

Merry Christmas

Getting the attention of our elected representatives

2008-12-05T10:29:00.016-05:00

A few other noteworthy items have transpired over the last month.

Those of you in the Lyme community may recall that early this year, an MP from Manitoba (the Honourable James Bezan) invited Lyme patients from across the country to contact him with their Lyme adventures -- he wanted to hear from us about our experiences with Canada's medical system. Well, it seems he had a pretty good response. According to a recent article in Nova Scotia's Chronicle Herald, aptly titled It should have been done 10 years ago, Mr. Bezan has forwarded our accounts to new federal Minister of Health Leona Aglukkaq, as well as every one of her provincial counterparts.

"There seems to be a lack of education of our doctors, poor diagnostics and testing, and that has resulted in the virus [sic] having a greater negative impact on the lives of too many Canadians," Selkirk-Interlake MP James Bezan said in an interview. Bacteriological inaccuracies aside, Mr. Bezan hit the nail square on the head.

Elsewhere in Canada, the leader of Alberta's Liberal Caucus, MPP Kevin Taft Ph.D. (aka “the man with a plan”), tabled a private members statement entitled Diagnosing Lyme Disease (pdf format).

"Clearly, there are obvious deficits in the available background information, diagnostic criteria and testing recommendations for Lyme disease in Alberta." "I urge this government to work with CanLyme on a formal public review and work with federal agencies to revise Lyme testing."

Have you written your elected representatives yet? Contact your MP and MPP today ( BC, AB, SK, MB, ON, QC, NB, NS, PE, NL ).

Press Conference at Queen's Park

2008-12-01T03:26:00.010-05:00

On 7 November 2008, Lyme Action Group held a press conference at the Ontario Legislature. The purpose was to draw Chronic Lyme disease issues, and the plight of doctors who treat it, to the attention of our elected representatives and to the public. Participating in the event were medical science author Ms. Helke Ferrie, three of Dr. Krop's Lyme patients (Ms. Janet Mitchell, Dr. Graham Kucan, and Ms. Karin Klouman), and Dr. Jozef Krop.

Part 1: Introduction by Helke Ferrie

Part 2: Patient Janet Mitchell

Part 3: Patient Dr. Graham Kucan

Part 4: Patient Karin Klouman

Part 5: Dr. Jozef Krop

Lyme Action Group wishes to sincerely thank Ontario MPP Monte Kwinter, who kindly sponsored this event.

Dr. Ernie Murakami, MD on CBC Television

2008-11-19T15:31:00.017-05:00

Here is the CBC story about Dr. Murakami's inappropriate treatment by the BC College of Physicians and Surgeons. He was basically given an ultimatum earlier this year: retire or lose your licence! Why? Because he actively and openly treated Chronic Lyme disease. This is the same appalling treatment that Dr. Krop is now receiving from the Ontario College of Physicians and Surgeons.

If the YouTube video is not working, click here to see this clip on the CBC website.

Here is a link to the printed story that CBC ran a day earlier online.

Petition to the Ontario Legislature

2008-11-14T14:43:00.007-05:00

A petition has been prepared according to the rules required for presentation to the Ontario Legislature, the text of which appears below. If you would like a pdf copy, please request by email. We are looking for signatures of Ontarians, and the petition needs to be signed in person. Completed petitions can be mailed to our mailing address at the bottom of the form. Please help us spread the word -- ask permission to place copies in places of business, doctors offices and your local veterinarian.

.............................................................

PETITION TO THE LEGISLATIVE ASSEMBLY OF ONTARIO

WHEREAS the tick-borne illness known as Chronic Lyme Disease, which mimics many catastrophic illnesses, such as Multiple Sclerosis, Crohn’s, Alzheimer’s, arthritic diseases, depression, Chronic Fatigue and Fibromyalgia is increasingly endemic in Canada, but the scientifically validated diagnostic tests and treatment choices are currently not available in Ontario, forcing patients to seek these in the USA and Europe and

WHEREAS the Canadian Medical Association informed the public, governments, and the medical profession in the May 30, 2000, edition of their professional Journal (CMAJ) that Lyme Disease is endemic throughout Canada, particularly in Southern Ontario; and

WHEREAS the Ontario Public Health system and the Ontario Health Insurance Plan currently do not fund those specific tests that accurately serve the process of establishing a clinical diagnosis, but only recognize testing procedures known in the medical literature to provide false negatives at 45 to 95%; and

WHEREAS physicians practising in Ontario do not receive current and updated information on the incidence of Lyme Disease, being unaware that annually some 25,000 new cases are reported in North America, nor do physicians receive training in the diagnosis and treatment of Acute or Chronic Lyme Disease and, therefore, remain unfamiliar with the highly effective protocols developed by the International Lyme and Associated Diseases Society (ILADS); and

WHEREAS the Regulated Health Professions Act of Ontario states: “It is the duty of the Minister [of Health] to ensure that the health professions are regulated and coordinated in the public interest”

WE, THE UNDERSIGNED petition the Legislative Assembly of Ontario to request the Minister of Health to direct that the Ontario Public Health system and OHIP include all currently available and scientifically verified TESTS for Acute and Chronic Lyme diagnosis, to do everything necessary to create PUBLIC AWARENESS of Lyme Disease in Ontario, and to have internationally developed diagnostic and successful TREATMENT PROTOCOLS available to patients and physicians.

Online Petitions

2008-11-08T16:22:00.016-05:00

Thank you to Dr. Ernie Murakami, MD for sponsoring the following two online petitions relating to Lyme disease in Canada. Please sign on and let others know!

Stop the Persecution of Lyme Literate Doctors! (this petition is now closed)

New Research & Testing for Lyme Diagnosis! (this petition is now closed)

Just a note to bring to your attention. When you are signing these petitions, the Step 2 confirmation page gives you the choice to opt out of further correspondence from the petition host site. Remember to uncheck these boxes (which are checked by default) if you do not wish to receive such correspondence.

Toronto screening of "Under our Skin"

2008-11-02T16:49:00.022-05:00

A screening of this documentary film will take place at the Toronto Whole Life Expo 2008, Canada's largest showcase of natural health and green living.

Date: Friday November 14, 2008
Time: 4:30 pm - 6:30 pm
Location: Lecture Hall 205, Metro Toronto Convention Centre

This shocking U.S. documentary reveals the untold story of the massive spread of Lyme Disease throughout North America – “an emerging epidemic larger than AIDS”. It has been discovered that up to 50% of patients with Multiple Sclerosis and other neurodegenerative disorders including Autism, Parkinson's, ALS, as well as chronic fatigue and fibromyalgia, may simply have Chronic Lyme disease from a tick bite. It's detectable, treatable and reversible, yet thousands are suffering from misdiagnosis. In Canada there is no effective screening or treatment for Chronic Lyme. Ironically, the Ontario College of Physicians and Surgeons is now investigating the last Canadian medical doctor who is willing to treat it openly. For one of the most powerful human rights stories of our decade do not miss this screening.

Helke Ferrie will be introducing the film and will also briefly discuss the new nationwide Charter for Health Freedom. She will soon be publishing her new book "Chronic Lyme Disease in Canada - The Persecution of Doctors Able to Treat It and the Denial of Treatment Choice to Patients". Discussion afterwards with Dr. Jozef Krop and the Lyme Action Group.

Free admission with any Whole Life Expo pass.

Questions and comments can be directed all weekend to the Lyme Action Group located at KOS PUBLISHING booth 166.

For more information about this film, including trailers, visit Open Eye Pictures online.

What YOU can do:

2008-11-01T18:02:00.010-04:00

• Write to your provincial MPP (1-800-267-8097) and federal MP demanding Canada use the International ILADS guidelines for Lyme.
• Write to the Ontario Minister of Health (David Caplan) and the Federal Minister of Health (Leona Aglukkaq).
• Contact Winnipeg North MP Judy Wasylycia-Leis who is calling for a national strategy for Lyme.
• If you have Lyme and have had difficulty being diagnosed and treated, contact local press with your story.

Please consider donating to the Lyme Action Group to support a public and political awareness campaign. Mail your cheque to P.O. Box 1095, Mount Albert, ON L0G 1M0 or donate at any TD Canada Trust Branch, to: TD Branch 3056, Account #5204294 or make a secure online donation by clicking on the Donate link to the right.

MEDICAL POLITICS: The Shame

2008-11-01T17:58:00.002-04:00

• Divided medical opinion on diagnosis and treatment: Infectious Disease Society of America (IDSA) vs. International Lyme and Associated Diseases Society (ILADS)
• IDSA Lyme disease guidelines ignore chronic Lyme, dissenting international research and published positive patient outcome from long-term antibiotic treatment. Insurance companies have denied coverage for long-term treatment relying on these guidelines as justification.
• The Attorney General of Connecticut found in May 2008 that the "the IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion,” and the IDSA enabled “the chairman who held a bias regarding the existence of chronic Lyme to handpick a like-minded panel.”
• OHIP test for Lyme is grossly false-negative and deficient in diagnosis of chronic Lyme and associated tick-borne infections compared to the combination of lab tests used in US and Europe.
• Positive patient outcome remains irrelevant to medical policy in Canada.
• Doctors are not trained to diagnose and treat and are afraid to become involved with chronic Lyme.
• Patients are caught in the middle – with physical, emotional and financial suffering, and are deprived of treatment which can stop or reverse progression of their disease.

LYME DISEASE: The Facts

2008-11-01T17:57:00.003-04:00

• Identified in 1975 and transmitted by the bite of ticks infected with a spirochete bacterium called Borrelia burgdoferi.
• Chronic Lyme develops when early diagnosis is missed or inadequately treated.
• Manifests as symptoms of virtually all known neurological, musculoskeletal, arthritic, gastrointestinal, cardiac, psychiatric and autoimmune disorders including MS, ALS, Alzheimer’s, Parkinson’s, chronic fatigue, fibromyalgia, autism, etc.
• Is endemic in Europe, North America and Asia.
• Has increased by 101% between 1992 and 2006 in USA.
• Estimates of 200,000 new cases annually in North America; 85,000 per year in Europe.
• Lyme incidence is greater than AIDS and West Nile Virus combined.
• Lyme is transmissible through the placenta and breast milk of infected mothers.

Denying Lyme is a Crime!

2008-11-01T17:41:00.021-04:00

This and today's subsequent posts are excerpts from our "Lyme Fact Sheet". If you would like a pdf copy, please contact us by email at LymeActionGroup@gmail.com.

Thousands of patients abandoned or forced to seek treatment outside Canada - Entire population at risk:

Up to 50% of the recent rise in Multiple Sclerosis may be caused by Borrelia burgdoferi, a bacterium that causes Lyme Disease. Usually transmitted by a tick bite, if not diagnosed and treated immediately, Lyme can become chronic. Known as “The Great Imitator,” it can manifest as Autism, Lou Gehrig’s Disease (ALS), Fibromyalgia, MS, Alzheimer’s, Parkinson’s, Chronic Fatigue, Crohn’s, Scleroderma and others, now all on the rise and often reversible. The tragedy in Canada is that this bacterium is actually identifiable and treatable. Imagine if we could cure half of the above cases and end needless suffering!

But doctors are not allowed to appropriately screen or treat patients for Chronic Lyme Disease. A 2004 directive by the College of Physicians and Surgeons of Ontario (CPSO) against the late Dr. Philip Williams MD of Ajax, who treated chronic Lyme disease, ordered that he: “will not diagnose... (among other chronic infections) Lyme disease” nor “treat patients with long-term antimicrobials . . .two weeks or more”.

Similarly, Dr. Ernie Murakami MD, of Vancouver, was forced by the BC regulatory College to stop treating Chronic Lyme Disease and quit his practice in February, 2008. Now Dr. Jozef Krop MD, of Mississauga, is under investigation by the CPSO for diagnosing and treating Chronic Lyme Disease, following a physician’s complaint. No patient has complained against Dr. Krop. Dr. Krop has reversed progression of symptoms of Multiple Sclerosis and Scleroderma in his practice by detecting and treating such patients for the Borrelia burgdorferi bacterium and associated infectious diseases. He is the last doctor in Ontario openly treating chronic Lyme, but may now be forced to stop treating Lyme patients.

The guidelines of the Infectious Disease Society of America (IDSA) for diagnosis and treatment of Lyme disease have been misused to restrict doctors from treating Chronic Lyme Disease, and their patients from obtaining insurance coverage for long-term treatment. In May 2008, the IDSA was forced to agree to an independent re-evaluation of their guidelines as part of an out-of-court settlement agreement in a landmark antitrust investigation by the Attorney General of Connecticut, which found significant undisclosed financial conflicts of interest on the original panel, suppression of scientific evidence, and exclusion of panel members with opposing viewpoints. However, Canada’s medical system continues to insist on following the old IDSA guidelines. Why?

The Centers for Disease Control (CDC) warns that Lyme cases have doubled over the last few years, and has red-flagged it as an emerging epidemic.

“Over a period of months or years, untreated infection can lead to mono- or oligoarticular arthritis, peripheral neuropathy, or encephalopathy.” CDC newsletter Oct. 3, 2008

OHIP-funded testing for Lyme misses almost 95% of chronic cases which would be detectable by state-of-the-art American lab methods not available here. The suffering must end now!!

Anyone can be bitten by an infected tick!

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