tag:blogger.com,1999:blog-67896644249596919032024-02-07T02:51:54.707-05:00LYME ACTION GROUPSouthern-Ontario based, our purpose is to lobby the Ministry of Health: 1)To recognize reputable laboratories in the U.S. and elsewhere, which appropriately test for Lyme disease; 2)To improve Canadian testing to the same standard; 3)To adopt treatment protocols of physicians who are knowledgeable in Lyme treatment; 4)To ensure that Ontario physicians are free to treat Lyme patients using internationally accepted protocols, without interference by the CPSO.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.comBlogger66125tag:blogger.com,1999:blog-6789664424959691903.post-66628004863378950852013-05-29T21:09:00.001-04:002013-05-29T21:10:58.753-04:00Lyme Disease Awareness in TorontoThe lighting of the CN Tower for Lyme awareness was a grand success. For those who did not see it, Marlene Ziehl Spies has kindly shared her photos:<br />
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<br />Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-13341972005893542262013-05-15T13:28:00.000-04:002013-05-15T13:28:03.124-04:00Niagara Falls GOING GREEN for LYME AWARENESSOn May 17th the lights on Niagara Falls will be going green for Lyme disease awareness month.<br />
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People will be congregating there, coming from various parts of the country to show solidarity and support for the thousands of patients suffering from Lyme disease in CANADA. <b>Please come out and join us. </b> Your presence and support means so very much to Lyme patients and their families. Show them that you care by being there on behalf of those who are bedridden or too ill to be in attendance themselves.<br />
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There is a bus going to Niagara from Brampton for this event. For more information <a href="http://meerkatmarlene.blogspot.ca/" target="_blank">click here.</a><br />
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Have you ever seen the Falls lit up at night?. Bring your friends and family and make an outing of it! <br />
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<br />Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-39779089654467981462012-12-01T19:04:00.001-05:002012-12-01T19:04:45.233-05:00Please note: The Lyme Action Group does not endorse any particular supplements, medications or treatment modalities.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-84395873711230229112012-06-21T14:32:00.002-04:002012-06-21T14:32:21.703-04:00Elizabeth May, MP - Tables Private Members Bill on Lyme Disease<a href="http://elizabethmaymp.ca/news/publications/press-releases/2012/06/21/may-tables-private-members-bill-on-lyme-disease/" target="_blank">http://elizabethmaymp.ca/news/publications/press-releases/2012/06/21/may-tables-private-members-bill-on-lyme-disease/</a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-82163685307753968692012-05-30T18:19:00.001-04:002012-05-30T18:19:10.798-04:00Meerkat's Heap: Successful Lyme Day!<a href="http://meerkatmarlene.blogspot.com/2012/05/successful-lyme-day.html?spref=bl">Meerkat's Heap: Successful Lyme Day!</a>: Saturday, May 19th, was the Lyme Disease Awareness day which was held in Chinguacousy Park, Brampton. It was wonderful! You can see pictures...Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-4354947770326045592012-04-12T12:20:00.000-04:002012-04-12T12:20:45.944-04:00LYME AWARENESS DAY BRAMPTON 2012Please visit event website for more information - <a href="http://www.lymewalkbrampton.ca/">http://www.lymewalkbrampton.ca/</a><br />
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The Lyme Walk in Chingaucousy Park on May 19, 2012, with a link to the park, the address, and information, can be found on this link: Lyme Walk in Brampton - at the above address.<br />
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The core group or committee arranging the walk, is working hard at getting everything sorted out and ready to go on the web. We have had several meetings with the Park events coordinator, we are in email contact with the Brampton City Councillors and others, and we are trying to set everything up to make it easy for people to take part. (*Brampton will proclaim May 2012 Lyme Awareness Month! <a href="http://t.co/dga2fRpu" rel="nofollow nofollow" target="_blank">http://t.co/dga2fRpu</a> )<br />
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Those who want to travel the distance, can make arrangements for hotels, or save airmiles, or put a few dollars away every month. Very close to the park is a newly renovated Holiday Inn, and the bus services are very well arranged with stops all around the park. Please post in the Comments on the Lymewalk website if you have specific questions or recommendations!<br />
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(Marlene says:)<br />
"Volunteers so far are doing all the work, donating time, effort and talents. I’m in contact with several forms of media and will continue to do so, but of course the more info that can be sent, the better our chances of getting coverage.<br />
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As for funds – any funds raised after expenses, will be donated to the Canadian Lyme Disease Foundation, charitable organization numbered 864437603RR0001. <br />
Caledon proclaimed May as Lyme Awareness Month 2012! <br />
Walk and family picnic for Lyme Disease Awareness <br />
Please download the registration form at <a href="http://www.lymewalkbrampton.ca/">http://www.lymewalkbrampton.ca/</a> and waiver to complete and return.<br />
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THANK YOU FOR THE SUPPORT ~ SEE YOU IN MAY!Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com2tag:blogger.com,1999:blog-6789664424959691903.post-24060370835971027612012-03-19T12:06:00.000-04:002012-03-19T12:06:03.090-04:00Canadian Lyme RegistryThe Richmond Hill Lyme Support Group has initiated the formulation of a national registry of Lyme patients.<br />
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If you would like to be counted, visit:<br />
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<a href="http://www.danceintherain.ca/canada-lyme-disease-registry/" target="_blank">http://www.danceintherain.ca/canada-lyme-disease-registry/</a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-41374565654480343132012-03-19T11:57:00.000-04:002012-03-19T11:57:59.522-04:00Lyme on Rogers Television<a href="http://www.rogerstv.com/page.aspx?sid=4011&rid=17&lid=237&gid=92291#.T1ku5VHTu0w.facebook" target="_blank">CLICK HERE FOR INTERVIEW</a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-28642188456404358672012-02-11T18:00:00.000-05:002012-02-11T18:00:48.630-05:00ONTARIO HEALTH STUDY - GIVE LYME DISEASE A VOICE!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.<br />
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About the Study (via Ontario Health Study website)<br />
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.<br />
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<a href="https://ontariohealthstudy.ca/en/home">https://ontariohealthstudy.ca/en/home</a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-18963736539466462092012-02-08T15:41:00.000-05:002012-02-08T15:41:39.535-05:00NEW Borrelia Blood Culture Test by Advanced Laboratory Services Inc.(the following is a press release from Advanced Laboratory Services): <br />
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THE NEW LYME BORRELIA BLOOD TEST<br />
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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:<br />
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BACKGROUND<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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THE BREAKTHROUGH<br />
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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.<br />
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THE BORRELIA CULTURE:<br />
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Culturing Bb from clinical specimens using our proprietary methods has these advantages:<br />
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• By definition, culture is a direct test and if positive, indicates that an active infection was present at the time the specimen was taken<br />
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• All known strains of Borrelia burgdorferi sensu lato can be detected<br />
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• Can replace xenodiagnoses in many instances<br />
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• Culture positivity fulfills even the strict CDC surveillance case definition<br />
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• Cultures may be positive even in an infected patient who is seronegative<br />
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• A culture that is still positive post treatment indicates ongoing infection<br />
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• Advanced methods have resulted in increased yield and decreased turn-around time<br />
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• Presently we are only accepting blood for culture. Ability to culture other body fluids and tissues is being explored.<br />
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• Will become the new Gold Standard for laboratory diagnosis of Borrelia infection<br />
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METHODS:<br />
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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.<br />
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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.<br />
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WHO SHOULD BE CULTURED?<br />
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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 .<br />
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We have found that the success of culturing Borrelia can be increased by following these simple recommendations:<br />
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• 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.<br />
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• Borrelia are more likely to be recovered from patients who are symptomatic at the time of blood sampling.<br />
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• 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.<br />
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• 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. <br />
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• 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.<br />
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• Do not send any samples on Friday or Saturday as the lab is not open on weekends.<br />
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WHO MAY ORDER THIS TEST?<br />
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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.<br />
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ABOUT ADVANCED LABORATORY SERVICES, INC.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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CONTACT US!<br />
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!<br />
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501 Elmwood Avenue, Sharon Hill, PA 19079<br />
Phone: (855) 238-4949 · Fax: (855) 238-4946<br />
<a href="mailto:questions@advanced-lab.com">questions@advanced-lab.com</a><br />
<a href="http://www.advanced-lab.com/">http://www.advanced-lab.com/</a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-72113035816603355972012-02-08T14:09:00.001-05:002012-02-08T15:21:32.155-05:00Sign the Petition - Make A Difference(Via lymedisease.org - formerly CALDA) ***Please note that for Canadians simply click your country - it will not allow a Province or Territory. <br />
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"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. <br />
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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. <br />
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This is wrong because: <br />
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1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;<br />
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; <br />
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 <br />
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.<br />
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Sign the petition to urge:<br />
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The NGC to remove the guidelines as its listing rules require.<br />
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The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease. "<br />
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<a href="http://www.lymedisease.org/petitionscript/index.php" target="_blank">http://www.lymedisease.org/petitionscript/index.php</a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-21983513125377128982011-11-21T12:25:00.000-05:002011-11-21T12:25:10.519-05:00WHOLE LIFE EXPO 2011Come meet members of the <span style="color: lime;">Lyme Action Group</span> at the <span style="color: orange;">Whole Life Expo</span> this weekend, November 25th-27th.<br />
Visit us at booth 157. The book 'Ending Denial' will be available for purchase.<br />
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For more information about the Expo: <br />
<a href="http://wholelifecanada.com/">http://wholelifecanada.com/</a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-85944429836600682752011-03-21T19:13:00.001-04:002011-03-21T19:15:02.525-04:00Nicole Edwards' CD Release Concert<div class="ecxMsoNormal" style="color: white;"><span style="font-family: 'Comic Sans MS'; font-size: 14pt;"><br />
</span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">Featuring: Ken Whiteley </span></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">Special guest: Scott Merritt</span></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><b><span style="font-family: 'Comic Sans MS';">WHEN: </span></b><span style="font-family: 'Comic Sans MS';">Sunday April 17<sup>th</sup></span></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';"><b>WHERE:</b> Hugh’s Room</span></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">2261 </span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">Dundas</span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';"> West, </span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">Toronto</span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';"></span></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">Open for Brunch: </span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">1pm</span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';"></span></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';"><b>CONCERT TIME:</b> </span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';">2pm</span></span><span style="font-family: Comic Sans MS; font-size: small;"><span style="font-family: 'Comic Sans MS';"></span></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><b><span style="font-size: medium;"><span style="font-size: small;">TICKET PRICE:</span> </span></b>$15 in advance/$17 at the door</span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><b>Special message from Nicole: Two for One Special for my Lyme Peers. Just mention lyme when you purchase</b></span></div><div class="ecxMsoNormal" style="color: white;"><span style="font-family: Comic Sans MS; font-size: small;"><b>your ticket and you'll receive a second ticket free!<br />
</b></span></div><div class="ecxMsoNormal" style="color: white;"><br />
</div><span style="color: white; font-family: 'Comic Sans MS';"> <div class="ecxMsoNormal"><cite><span style="font-family: Arial; font-size: 13.5pt;">Check out Nicole’s music at: </span></cite></div><div class="ecxMsoNormal"><cite><span style="font-family: Arial; font-size: 13.5pt;"><a href="http://www.cdbaby.com/cd/nicoleedwards5" target="_blank">www.cdbaby.com/cd/nicoleedwards5</a> </span></cite></div><div class="ecxMsoNormal"><cite><span style="font-family: Arial; font-size: 13.5pt;"><a href="http://www.myspace.com/nicoleedwardsmusic" target="_blank">www.myspace.com/nicoleedwardsmusic</a></span></cite></div></span>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-21722955394514529412010-10-15T10:12:00.004-04:002010-10-15T17:25:21.060-04:00ILADS Conference 2010<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu1NaPgkUQdYHyB8C3BIQwCTj5BTXT7S6j4GcHu8ZSRPdaJIB-t9fp33XPfdbyaMwGwYpR2_XSeaYwO8Z7UFDNQamkr4noWQCi2FJNbvl7ooZ30rv9iAKvp7lRy1-Z-W_PKcwl8oFKA_s/s1600/ILADS+logo_small_2010b.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="67" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu1NaPgkUQdYHyB8C3BIQwCTj5BTXT7S6j4GcHu8ZSRPdaJIB-t9fp33XPfdbyaMwGwYpR2_XSeaYwO8Z7UFDNQamkr4noWQCi2FJNbvl7ooZ30rv9iAKvp7lRy1-Z-W_PKcwl8oFKA_s/s320/ILADS+logo_small_2010b.gif" width="320" /></a></div>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 <a href="http://www.ustream.tv/channel/ilads">clicking here</a>. You can also download a <a href="http://www.ilads.org/lyme_programs/online_conference_program_817210.pdf">complete program</a> of the weekend's events and check out when the various speakers will be at the podium.<br />
<br />
Just a side-note that <a href="http://www.ilads.org/lyme_programs/2011.html">next year's ILADS conference</a> 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.<br />
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The <i>International Lyme and Associated Diseases Society</i> (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.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-77731182627397062212010-08-17T18:04:00.045-04:002010-09-25T20:13:39.875-04:00September Extravaganza<div style="text-align: center;"><b>*****THE EXCITEMENT BEGINS ON SUNDAY!*****</b><br />
<i>Please be advised that there is a large book fair</i><br />
<i>happening around the Queen's Park area on Sunday.</i><br />
<i>For those driving to the Theatre screening of the film,</i><br />
<i>this event may affect road access around Queen's Park</i><br />
<i>Crescent, and immediately north thereof.</i></div><div style="text-align: center;"><i>(don't forget to dress warmly!) </i></div><br />
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.<br />
<br />
<u><b>Screening of Under Our Skin</b></u><br />
The first is a theatrical screening of an award-winning Lyme documentary on Sunday, September 26th. A gripping tale of microbes, medicine & money, <a href="http://www.underourskin.com/"><b><i>Under Our Skin</i></b></a> 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.<br />
<blockquote><u><b><i>Under Our Skin</i></b></u><br />
Isabel Bader Theatre<br />
Sunday September 26th<br />
1:00pm matinée & 7:00pm evening screenings<br />
3-hour event includes discussion panel after the film<br />
Brochures and other info available before the event<br />
Doors open 1 hour before scheduled time</blockquote>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 <a href="https://docs.google.com/fileview?id=0B4cSQuGY-KWxOGMzZGY4MTEtNGUxYS00NDQzLWFkODktYmVkOTQzYzU2NWZh&hl=en&authkey=CI6c4uMF">downloadable brochure</a> (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 <a href="http://www.canlyme.com/UOS_isabel_bader.html">CanLyme.com</a>. 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 <a href="mailto:LymeActionGroup@gmail.com?subject=hey%20Rob,%20I%27d%20like%20to%20volunteer%20for%20the%20UOS%20screening%20in%20Toronto">Rob</a> for more details.<br />
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<u><b>Wall of Hope 2010</b></u><br />
The second big event to tell you about is the annual <b>Wall of Hope</b> 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 <b>Jim Wilson</b> to our event, in addition to MPP <b>France Gelinas</b> and lawyer <b>Paul Haefling</b>. 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.<br />
<blockquote><u><i><b>Wall of Hope</b></i></u><br />
Queen's Park (south lawn)<br />
Monday September 27th<br />
12 noon until 1:00 pm<br />
Picnic lunch to follow event</blockquote>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.<br />
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<div style="text-align: center;"></div><div style="text-align: left;">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!</div><br />
<iframe frameborder="0" height="350" marginheight="0" marginwidth="0" scrolling="no" src="http://maps.google.com/maps?f=q&source=s_q&hl=en&geocode=&q=43.6617,+-79.39125&sll=43.661663,-79.39108&sspn=0.001296,0.003449&ie=UTF8&ll=43.663215,-79.390254&spn=0.010866,0.018239&z=15&output=embed" width="425"></iframe><br />
<small><a href="http://maps.google.com/maps?f=q&source=embed&hl=en&geocode=&q=43.6617,+-79.39125&sll=43.661663,-79.39108&sspn=0.001296,0.003449&ie=UTF8&ll=43.663215,-79.390254&spn=0.010866,0.018239&z=15" style="color: blue; text-align: left;">View Larger Map</a></small><br />
<br />
Remember, both of these September events are scent-free.<br />
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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 <a href="mailto:LymeActionGroup@gmail.com?subject=Hey%20Rob%21%20I%20have%20a%20question%20about%20the%20Wall%20of%20Hope%20Toronto">email</a> if you have any questions.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com1tag:blogger.com,1999:blog-6789664424959691903.post-41353205917522188362010-07-27T19:23:00.017-04:002010-08-09T12:57:35.199-04:00Turning up the volume / Stage 2Recently 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.<br />
<br />
The Ministry's <a href="http://www.health.gov.on.ca/en/ms/lyme/"><i><b>Let's Target Lyme</b></i></a> 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.<br />
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<embed allowfullscreen="true" allowscriptaccess="always" flashvars="&date=2010-06-18%2010%3A48%3A39&description=Ticks%20that%20carry%20Lyme%20Disease%20are%20in%20Ontario%2C%20and%20you%20need%20to%20know%20how%20to%20stay%20safe%20and%20not%20get%20bit.%20Take%20some%20good%20advice%20from%20the%20Bug%20Guy%2C%20Curtis%20Russell%2C%20PHD.&file=http%3A%2F%2Fwww.media.gov.on.ca%2Fae03cafce5a9061d%2Fen%2Fvideos%2F3892_1024.mp4&hd.file=http%3A%2F%2Fwww.media.gov.on.ca%2Fae03cafce5a9061d%2Fen%2Fvideos%2F3892_2048.mp4&hd.state=false&image=http%3A%2F%2Fwww.media.gov.on.ca%2Fae03cafce5a9061d%2Fen%2Fimages%2Fcapture_001.jpg&plugins=viral-2%2Cyourlytics-1%2Chd-1&stretching=exactfit&title=The%20Bug%20Guy%20is%20here%20to%20help%20you%20Target%20Lyme%20Disease&viral.email_footer=0&viral.link=http%3A%2F%2Fwww.videodelivery.gov.on.ca%2Fplayer%2Fdownload.php%3Ffile%3Dhttp%3A%2F%2Fwww.media.gov.on.ca%2Fae03cafce5a9061d%2Fen%2Fpages%2Ftext.html&viral.onpause=false&yourlytics.callback=http%3A%2F%2Fwww.videodelivery.gov.on.ca%2Fplayer%2Fjw_callback.php&yourlytics.height=171&yourlytics.visible=true&yourlytics.width=320&yourlytics.x=0&yourlytics.y=0" height="195" src="http://www.media.gov.on.ca/player/5.1.818/player.swf?config=http://www.media.gov.on.ca/ae03cafce5a9061d/en/config.xml&image=http://www.media.gov.on.ca/ae03cafce5a9061d/en/images/capture_001.jpg" width="320"></embed><br />
<br />
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.<br />
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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 (<a href="http://docs.google.com/fileview?id=0B4cSQuGY-KWxNzRlY2Y1ZmEtNGFmZi00OGVkLTgwN2UtM2QxYTQ3ODE0NDgy&hl=en&authkey=CIL04PwM">Message from the Chief Medical Officer of Health</a>). 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 <i><b>never ever</b></i> 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 "<a href="http://www.canlyme.com/phys.html">For Physicians</a>" information -- what every physician should know about the disease.<br />
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Last week, CTV News aired a Lyme story on its Lifetime segment, with Health Reporter Pauline Chan. You can watch the video clip <a href="http://watch.ctv.ca/news/news/health/lifetime-with-pauline-chan/#clip328031">here</a>. CTV continues to do a great job of providing good information about Lyme disease, such as:<br />
<ul><li>the number of cases of the disease continues to rise in Ontario</li>
<li>the disease is difficult to detect</li>
<li>it can cause years of debilitating illness if not diagnosed quickly</li>
<li>up to half of those infected may not even show a Lyme rash</li>
<li>it is often misdiagnosed as MS, Chronic Fatigue, Arthritis and many other illnesses</li>
</ul><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgShpBKI74Y82uBhoR0OYYfdvbifizIm-n6eimaU8NCeawfYDqFSbB3-NoWgwP7mFH82uQan6bH5QWPp15sPyoQVS6aaZPMqXlMmqL66YHKJuGF34ZHsAaFuR51igVTuAGMS_aioYAdWn4/s1600/201007+CTV+dr+krop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgShpBKI74Y82uBhoR0OYYfdvbifizIm-n6eimaU8NCeawfYDqFSbB3-NoWgwP7mFH82uQan6bH5QWPp15sPyoQVS6aaZPMqXlMmqL66YHKJuGF34ZHsAaFuR51igVTuAGMS_aioYAdWn4/s320/201007+CTV+dr+krop.jpg" /></a></div><br />
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 <i>College of Physicians and Surgeons of Ontario</i> (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 <i>International Lyme and Associated Diseases Society</i> (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 <i>Infectious Diseases Society of America</i> (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 (<a href="http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20100717/NEWS/7170319">Massachusetts</a> 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.<br />
<br />
A grateful shout-out goes out this month to Dale Goldhawk. His popular program, <i>Goldhawk Fights Back</i>, 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 <a href="http://zoomerradio.ca/blog/the-news/hst-lyme-disease/">interview with Dr. Maureen McShane</a>, 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 <a href="http://zoomerradio.ca/blog/schedule/weekdays/goldhawk-fights-back/">station's website</a>. Don't miss it!<br />
<div style="text-align: center;">**********************************</div><div style="text-align: center;">Please send a brief note of appreciation to <a href="mailto:fightback@goldhawk.com?subject=Thank%20you%20for%20covering%20Lyme%20/%20Thursday%20July%2029">Dale Goldhawk</a> 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.</div><div style="text-align: center;">**********************************</div><br />
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 (<a href="http://www.richmond-news.com/health/Disease+expert+dismisses+Lyme+diagnosis/3245474/story.html">Disease Expert Dismisses Lyme diagnosis</a>).<br />
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And on that note, a closing thought:<br />
<blockquote class="quotebig"><dt style="font-family: Georgia,"Times New Roman",serif;"><b><i>All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.</i></b><br />
Arthur Schopenhauer <br />
German philosopher (1788 - 1860)</dt></blockquote>Welcome to Stage 2.<br />
<br />
p.s. Stay tuned for details of events coming up in September, including a Toronto screening of <i>Under Our Skin</i> (with special guest and film director Andy Abrahams Wilson!) and the annual <i>Wall of Hope</i> public demonstration at Queen's Park.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com2tag:blogger.com,1999:blog-6789664424959691903.post-56856684636032966862010-06-14T11:52:00.010-04:002010-06-14T16:47:30.235-04:00CBC Radio -- The Current<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGjJFkwC9zqWNjvS2-gmPtCXV2wwB__KWBr5Lj_TmxD0VcZnkpoEGXZgYtU4rqlqGlWZqEPqnzQ6gCC9SrnfPpFNkvP4vJ35yhbhPKGXOsKE3kfFKr4KYvOpnpcDM8HVAA2lbqH0hrVT0/s1600/CBC+radio+-+the+current.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 118px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGjJFkwC9zqWNjvS2-gmPtCXV2wwB__KWBr5Lj_TmxD0VcZnkpoEGXZgYtU4rqlqGlWZqEPqnzQ6gCC9SrnfPpFNkvP4vJ35yhbhPKGXOsKE3kfFKr4KYvOpnpcDM8HVAA2lbqH0hrVT0/s320/CBC+radio+-+the+current.jpg" alt="" id="BLOGGER_PHOTO_ID_5482659695190095570" border="0" /></a>Good morning Canada! -- and beyond.<br /><br />CBC Radio listeners were treated to an interesting conversation about Lyme disease this morning. Anna Maria <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Tremonti</span>, host of the The Current, <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglFiYkwvIWv2x7B9FPiL2LMBTbMZffUY5H07Z3kAEw4nuxzE28_ddPAzcn4-VtukhrtGuayVPVLHMVD3M44Ql46IOMxKOSbAKZClE0jLlnl1zEsUXoCSCbjzrfHWqZygRESijF3GaVQIk/s1600/CBC+canada+lives+here.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 139px; height: 116px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglFiYkwvIWv2x7B9FPiL2LMBTbMZffUY5H07Z3kAEw4nuxzE28_ddPAzcn4-VtukhrtGuayVPVLHMVD3M44Ql46IOMxKOSbAKZClE0jLlnl1zEsUXoCSCbjzrfHWqZygRESijF3GaVQIk/s320/CBC+canada+lives+here.jpg" alt="" id="BLOGGER_PHOTO_ID_5482687192262052386" border="0" /></a>interviewed two doctors; Dr. Maureen <span class="blsp-spelling-error" id="SPELLING_ERROR_1">McShane</span>, a physician practising in New York State, and Dr. Nicholas Ogden, with the Public Health Agency of Canada.<br /><br />So let's compare these two fine people. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_2">McShane</span> is a practising physician. Dr. Ogden researches ticks. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_3">McShane</span> treats Lyme patients. Dr. Ogden researches ticks. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">McShane</span> 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.<br /><br />I'm sure you're getting the point. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_5">McShane</span> 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. <span class="blsp-spelling-error" id="SPELLING_ERROR_6">McShane</span> 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.<br /><br />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.<br /><br />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 <span style="font-weight: bold;">are not included</span> in those wonderful national statistics about Lyme disease.<br /><br />Two thumbs up to Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_7">McShane</span> for boldly speaking out on this important subject.<br /><br />If you missed this morning's radio show, you can access it on the <a href="http://www.cbc.ca/thecurrent/2010/06/june-14-2010.html">CBC website</a> (see <span style="font-weight: bold;">Pt2: Lyme disease</span>). Please provide some <a href="http://www.cbc.ca/thecurrent/contact/index.html">feedback to The Current</a> -- let them know what you think and encourage them to do more coverage about Lyme.<br /><br />Wishing you all good health!Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com8tag:blogger.com,1999:blog-6789664424959691903.post-6347589751090954112010-06-05T14:42:00.019-04:002010-06-12T21:34:49.912-04:00Lyme disease awareness<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2nz44krJXDctMvgVLxb_eL2BN-Yc1xRkmQ2CWYRnSVFEQjPrrYMjThlxlKT6N1cnBwEkYvPeRETPe75BFZC8BLa392XoXQEr-LtCcL-pBFtAOlnt7iQN1EvBwZNcXdweWKbIyXKaVSAk/s1600/Ontario+MOH+let%27s+target+lyme.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 325px; height: 133px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2nz44krJXDctMvgVLxb_eL2BN-Yc1xRkmQ2CWYRnSVFEQjPrrYMjThlxlKT6N1cnBwEkYvPeRETPe75BFZC8BLa392XoXQEr-LtCcL-pBFtAOlnt7iQN1EvBwZNcXdweWKbIyXKaVSAk/s400/Ontario+MOH+let%27s+target+lyme.jpg" alt="" id="BLOGGER_PHOTO_ID_5479378382315720386" border="0" /></a>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.<p></p> <p style="margin-bottom: 0cm;">And what a month it's been! Looking back over recent weeks, there were some important happenings of note.</p> <p style="margin-bottom: 0cm;">The province of Ontario has quietly launched a Lyme awareness campaign called <a href="http://www.health.gov.on.ca/en/ms/lyme/default.aspx">Let's Target Lyme!</a>, 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: <b>Lyme disease is most successfully and economically treated when it is </b><u><b>diagnosed early</b></u>. 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.</p> <p style="margin-bottom: 0cm;">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 <a href="mailto:LymeActionGroup@gmail.com?subject=Lyme%20awareness%20in%20my%20community">let us know</a>.<br /></p> <ul><li><a href="http://www.niagararegion.ca/living/health_wellness/disease-prevent/Lyme-Disease.aspx">Niagara Region</a></li></ul> <ul><li>Region of Waterloo (<a href="http://chd.region.waterloo.on.ca/WEB/health.nsf/4f4813c75e78d71385256e5a0057f5e1/76e00f555d5e6d1f8525759a0050781f%21OpenDocument">Fight the Bite!</a>)</li></ul> <ul><li><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Chattham</span>-Kent in partnership with <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Rondeau</span> Provincial Park (<a href="http://farmconnection.wordpress.com/2010/05/24/lyme-disease-campaign-targets-ticks/">Lyme Disease: Reduce the Risk, Target Ticks!</a>)</li></ul> <ul><li>Province of Alberta (<a href="http://alberta.ca/acn/201005/28411B67451DA-BA8C-5702-5DEA90B882927A73.html"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">Albertans</span> warned</a>)</li></ul> <ul><li>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 (<a href="http://www.pc.gc.ca/eng/pn-np/on/lawren/visit/visit7.aspx">Ticks and Your Health)</a>.</li></ul><ul><li>City of Hamilton (<a href="http://www.dundasstarnews.com/news/article/211819">Expanded program includes Lyme disease</a>)<br /></li></ul> <p style="margin-bottom: 0cm;">Nationally, a big thank you to <span class="blsp-spelling-error" id="SPELLING_ERROR_3">CTV's</span> W5 for recently rebroadcasting their excellent investigative journalism piece from November 2009 (<a href="http://lymeactiongroup.blogspot.com/2009/11/w5-out-of-wild.html">Out of the Wild</a>).</p> <p style="margin-bottom: 0cm;">Last year's successful <a href="http://lymeactiongroup.blogspot.com/2009/05/magnotta-and-canlyme-take-to-airwaves.html">Lyme awareness radio spots</a>, produced by <span class="blsp-spelling-error" id="SPELLING_ERROR_4">CanLyme</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Magnotta</span> Wines, are back on the airwaves for another season. Here is an excerpt from a recent <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Magnotta</span> <a href="http://www.magnotta.com/pdf/Press%20Release_2010%20Lyme%20Cellar%20Event.pdf">press release</a>, which provides an excellent summary of the current problem in Ontario and throughout the country:</p> <p style="margin-bottom: 0cm; font-style: italic;">“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.”</p> <p style="margin-bottom: 0cm;">John Scott, Ontario's celebrated tick researcher, has coauthored a recently published paper in the <a href="https://docs.google.com/fileview?id=0B4cSQuGY-KWxY2Y2Y2I1ZjctYjViNC00YjAzLTg1ZmItNmM5NWNjMTA3Yjcz&hl=en">June 2010 Journal of Vector Ecology</a>. 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Borrelia</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Borrelia</span> 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.</p> <p style="margin-bottom: 0cm;">Just last week, <a href="http://www.ombudsman.on.ca/en/media/press-releases/2010/andr%C3%A9-marin-reappointed-as-ontario-ombudsman.aspx">news broke</a> that Ontario Ombudsman <span class="blsp-spelling-error" id="SPELLING_ERROR_9">André</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_10">MPP</span> 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.</p><p style="margin-bottom: 0cm;">Here are a few coming events you won't want to miss.<br /></p><p style="margin-bottom: 0cm;">For those of you in and around Toronto, <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Helke</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Ferrie</span> will deliver a Lyme lecture at <a href="http://thebigcarrot.ca/index.php?id=121">The Big Carrot</a> Health Food Store on <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Danforth</span> this Thursday June 10<sup><span class="blsp-spelling-error" id="SPELLING_ERROR_14">th</span></sup> at 7pm. A regular contributor to Vitality Magazine, <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Helke</span> was the Editor of our book project,<span style="font-style: italic;"><span style="font-style: italic;"> </span>Ending Denial</span>. Copies of our new book will be on sale at this event -- no shipping charges!<br /></p> <p style="margin-bottom: 0cm;">For those of you in the Golden Horseshoe region and thereabouts, don't miss the next meeting of the Lyme Disease Association of Ontario (<span class="blsp-spelling-error" id="SPELLING_ERROR_16">LDAO</span>). Scheduled for Saturday June 12<sup><span class="blsp-spelling-error" id="SPELLING_ERROR_17">th</span></sup> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_18">LDAO</span> President <a href="mailto:CrtSteggles@gmail.com?subject=Tell%20me%20more%20about%20the%20LDAO%20Spring%20Meeting%21">Court <span class="blsp-spelling-error" id="SPELLING_ERROR_19">Steggles</span></a>. Note that <span class="blsp-spelling-error" id="SPELLING_ERROR_20">LDAO</span> 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 <a href="http://docs.google.com/leaf?id=0B4cSQuGY-KWxZmFmNzU0ZjgtMmY3NS00YmFjLWI4ZmUtZjNjOTk1MDVlODhl&hl=en">meeting invite</a>, complete with map. <span style="font-style: italic;">Ending Denial</span> will also be available at this <span class="blsp-spelling-error" id="SPELLING_ERROR_21">LDAO</span> meeting.<br /></p><p style="margin-bottom: 0cm; font-weight: bold; font-style: italic;"></p><span style="font-weight: bold;"></span><span style="font-weight: bold;"></span><blockquote><span style="font-weight: bold;"><span class="blsp-spelling-error" id="SPELLING_ERROR_22">LDAO</span> Spring Meeting</span><br />Saturday June 12, 2010<br />1:30pm – 3:30pm<br />Trinity United Church<br />70 Mill Street East, Acton</blockquote><p style="margin-bottom: 0cm;"></p> <p style="margin-bottom: 0cm;">And finally, a big thank you to everyone supporting us through continuing sales of our new book <a style="font-style: italic;" href="http://lymeactiongroup.blogspot.com/2010/05/ending-denial.html">Ending Denial</a>. 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_23">MPP</span> 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 <a href="http://www.vitalitymagazine.com/may10_helke">Vitality Magazine</a> column by <span class="blsp-spelling-error" id="SPELLING_ERROR_24">Helke</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_25">Ferrie</span>.</p> <p style="margin-bottom: 0cm;">Wishing you all good health – together we are making a difference!</p>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-10354688573476935842010-05-17T15:28:00.021-04:002010-05-21T22:08:06.502-04:00Ending Denial<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXNqtU_c6TBSup1pYifJRpsZvQcpRmlCBw1ZMEFqmCfH-i5U5t0KjbPDvRuBtJ-OnbOTOuglPpD391xr4Um5N5WlZFa8k0-RhKmoPW6CoR84CpIFW3LlI2qkhExUdij6P1wQV14m7LsQw/s1600/Ending+Denial+cover+web.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 152px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXNqtU_c6TBSup1pYifJRpsZvQcpRmlCBw1ZMEFqmCfH-i5U5t0KjbPDvRuBtJ-OnbOTOuglPpD391xr4Um5N5WlZFa8k0-RhKmoPW6CoR84CpIFW3LlI2qkhExUdij6P1wQV14m7LsQw/s200/Ending+Denial+cover+web.jpg" alt="" id="BLOGGER_PHOTO_ID_5472338469501366770" border="0" /></a>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, <span style="font-weight: bold; font-style: italic;">Ending Denial - The Lyme Disease Epidemic: A Canadian Public Health Disaster</span> (front cover pictured at left; click for larger image).<br /><br />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.<br /><br /><span style="font-style: italic;">"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</span><span style="font-style: italic;"> to the courage of those who challenge the status <span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">quo</span></span> 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.</span>"<br /><div style="text-align: right;">-- Terence Young, MP <span class="blsp-spelling-error" id="SPELLING_ERROR_1"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">Oakville</span></span>, Ontario<br />(author of <a href="http://www.deathbyprescription.com/"><span style="font-weight: bold; font-style: italic;">Death by Prescription</span></a>)<br /></div><br />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 <span style="font-weight: bold; font-style: italic;">Ending Denial</span> 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.<br /><br />Individual copies of <span style="font-weight: bold; font-style: italic;">Ending Denial</span> 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.<br /><br />Orders can be made conveniently through our <span style="font-style: italic;"><span class="blsp-spelling-error" id="SPELLING_ERROR_2"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">PayPal</span></span> </span>donation link (right-hand margin), which allows quick and secure payment from major credit cards or your own <span style="font-style: italic;"><span class="blsp-spelling-error" id="SPELLING_ERROR_3"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">PayPal</span></span></span> account (please specify the number of copies of <span style="font-weight: bold; font-style: italic;">Ending Denial</span> with your payment -- look for the "<span style="font-style: italic;">Send a message with your donation?</span>" link on the confirmation page while completing your <span class="blsp-spelling-error" id="SPELLING_ERROR_4"><span class="blsp-spelling-error" id="SPELLING_ERROR_4">PayPal</span></span> transaction). You may also send personal cheques made out to "Lyme Action Group" to our mailing address, which is <span style="font-weight: bold;font-family:lucida grande;" >P.O. Box 1095, Mount Albert, Ontario, L0G 1M0</span>. For orders outside of Canada or any other questions, please <a href="mailto:LymeActionGroup@gmail.com?subject=Lyme%20disease:%20please%20send%20me%20more%20information%20about%20Ending%20Denial">contact us</a> for further information.<br /><br />Examples of total order costs, including shipping and handling:<br />1 copy, $40 or more<br />2 copies, $73 or more<br />5 copies, $97 or more<br /><br />Thank you for your support -- together we are making a difference!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVKuSuXa04Qj_xT5XIotwJ4W4oki4cEuTA3BPN4yxlFvvqlBQVpQoqSrGYCGEzrK0_UEhEyorxy-VLaJL5VOpfg_r2QzTyRdujp9cz6ZgBFvqBW-LeEarQZruTotPj5bZob9l1_KrsobY/s1600/Ending+Denial+back+cover.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 156px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVKuSuXa04Qj_xT5XIotwJ4W4oki4cEuTA3BPN4yxlFvvqlBQVpQoqSrGYCGEzrK0_UEhEyorxy-VLaJL5VOpfg_r2QzTyRdujp9cz6ZgBFvqBW-LeEarQZruTotPj5bZob9l1_KrsobY/s200/Ending+Denial+back+cover.jpg" alt="" id="BLOGGER_PHOTO_ID_5472339354544442626" border="0" /></a>The back cover is pictured at right; click for larger image.<br /><br />This book is dedicated to:<br /><span style="font-weight: bold;">Dr. Joseph <span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="blsp-spelling-error" id="SPELLING_ERROR_5">Kucan</span></span></span>, 1946-2009. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_6"><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Kucan</span></span> 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.<br /><br /><span style="font-weight: bold;">Gabe <span class="blsp-spelling-error" id="SPELLING_ERROR_7"><span class="blsp-spelling-error" id="SPELLING_ERROR_7">Magnotta</span></span></span>, 1949-2009. Gabe <span class="blsp-spelling-error" id="SPELLING_ERROR_8"><span class="blsp-spelling-error" id="SPELLING_ERROR_8">Magnotta</span></span>, 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_9"><span class="blsp-spelling-error" id="SPELLING_ERROR_9">Rossana</span></span> will not let his death have been in vain.<br /><br />And to the <span style="font-weight: bold;">doctors</span>, who continue to have the courage to treat Chronic Lyme patients in defiance of the political and medical odds.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com3tag:blogger.com,1999:blog-6789664424959691903.post-2712548997083691772010-04-30T11:51:00.015-04:002010-05-25T02:13:22.390-04:00May is Lyme awareness month<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2kPUaTdQODRPPl1b8siJC5UqPyq0kT9vLgI7XwJk07p065kcV9M2_6sIdV1pH8_66grJ9GuvwQayegbcRO106iVhDMgLpcSMmZilD3hiH00gALF7MrV5kf6YJZj1r-gzpIp86Df4C2TI/s1600/Lyme+ribbon+on+black.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 94px; height: 153px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2kPUaTdQODRPPl1b8siJC5UqPyq0kT9vLgI7XwJk07p065kcV9M2_6sIdV1pH8_66grJ9GuvwQayegbcRO106iVhDMgLpcSMmZilD3hiH00gALF7MrV5kf6YJZj1r-gzpIp86Df4C2TI/s200/Lyme+ribbon+on+black.jpg" alt="" id="BLOGGER_PHOTO_ID_5465966958310689506" border="0" /></a>So what are you doing to celebrate Lyme awareness month?<br /><br />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 <a href="mailto:LymeActionGroup@gmail.com?subject=help%20advertise%20our%20Lyme%20awareness%20event">line</a> if we can help spread the word for your event.<br /><br />Here is info on what's happening in the <span style="font-weight: bold;">Fort Erie, Ontario</span> area, just down the road from scenic Niagara Falls and across the border from Buffalo, New York. There will be <span style="font-weight: bold;">four free screenings</span> of Under Our Skin during the month of May!<br /><br />Three of the screenings will be at the <a href="http://www.forterie.library.on.ca/info.php"><span style="font-weight: bold;">Fort Erie Public Library</span></a>:<br />Centennial Branch -- <a href="http://maps.google.com/maps?f=q&hl=en&q=136+gilmore+road+fort+erie+ontario+l2a+2m1">136 Gilmore Road</a><br />Saturday May 1st at 1:00pm<br /><br />Centennial Branch -- <a href="http://maps.google.com/maps?f=q&hl=en&q=136+gilmore+road+fort+erie+ontario+l2a+2m1">136 Gilmore Road</a><br />Tuesday May 4<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span> at 6:00pm<br /><br />Crystal Ridge Branch -- <a href="http://maps.google.com/maps?f=q&hl=en&q=89+Ridge+Rd+S,+Crystal+Beach,+ON,+Canada&ll=42.874077,-79.051566&spn=0.022896,0.054245">89 Ridge Road South</a><br />Wednesday May 12<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span> at 6:00pm<br /><br />The fourth screening will be held at <a href="http://www.boutiquemovies.com/playing.html"><span style="font-weight: bold;">The Boutique Movie Theatre</span></a>:<br /><a href="http://www.mapquest.com/maps?address=320+Ridge+Road+N&city=Ridgeway&state=ON&zipcode=L0S&country=CA&latitude=42.883406&longitude=-79.051946&geocode=ADDRESS">320 Ridge Road, <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Ridgeway</span></a><br />Monday May 24<span class="blsp-spelling-error" id="SPELLING_ERROR_3">th</span> at 7:00pm.<br /><br />For more information or to reserve seating, please contact <a href="mailto:youngs4@sympatico.ca?subject=UOS%20screening%20in%20Fort%20Erie">Melisa</a>. Here is a <a href="http://docs.google.com/fileview?id=0B4cSQuGY-KWxNzE2ZDc4YzctY2FlMy00YjFkLTk3NTEtYmYxOTkyOTYyOGQx&hl=en"><span class="blsp-spelling-error" id="SPELLING_ERROR_4">downloadable</span> poster</a> for the event. Spread the word! For additional info about this award-winning documentary film, including film trailers and excerpts, please visit <a href="http://www.underourskin.com/">Under Our Skin</a> online.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTufapbFoL_ZcUAf2tBsHcA2qc8uN6FRpc41psGrCsLVyYQGJBM4TV9MEGAPDEUdULYOnt8HhQKTGMEXetO60oEXtPap_3bewWs3l7dUwBx5PpTzuaoCC1kGAnHPZufNdHFn0XfoZM6UA/s1600/uos-poster_horozontal.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 200px; height: 112px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTufapbFoL_ZcUAf2tBsHcA2qc8uN6FRpc41psGrCsLVyYQGJBM4TV9MEGAPDEUdULYOnt8HhQKTGMEXetO60oEXtPap_3bewWs3l7dUwBx5PpTzuaoCC1kGAnHPZufNdHFn0XfoZM6UA/s200/uos-poster_horozontal.jpg" alt="" id="BLOGGER_PHOTO_ID_5465977128731048962" border="0" /></a>Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com1tag:blogger.com,1999:blog-6789664424959691903.post-7878274953413537012010-04-22T15:44:00.009-04:002010-04-22T20:29:54.585-04:00IDSA abandons Chronic Lyme patients<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPU2uFbHK5ViysZgtSc4uI6Aqbh0-OlbfR2ubJ3yvm1G98tbgiKk66muuEcNy4BtBSehQGiCQ5Jddp_Ewo56VZv-NYEa9-axl4oecZ6Gx9lbJp1g8EQ5zbM2GYwnFHxq_tEvlf2TaxABo/s1600/a+sad+day+2.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 114px; height: 114px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPU2uFbHK5ViysZgtSc4uI6Aqbh0-OlbfR2ubJ3yvm1G98tbgiKk66muuEcNy4BtBSehQGiCQ5Jddp_Ewo56VZv-NYEa9-axl4oecZ6Gx9lbJp1g8EQ5zbM2GYwnFHxq_tEvlf2TaxABo/s200/a+sad+day+2.jpg" alt="" id="BLOGGER_PHOTO_ID_5463062903015338658" border="0" /></a>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 (<a href="http://www.ilads.org/">ILADS</a>) and other supporting information.<br /><br />This excerpt from the final report provides a good summary of the IDSA's position:<br /><br /><span style="font-style: italic;">"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."</span><br /><br />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.<br /><br />If you can bear to read it, you can <a href="http://www.idsociety.org/uploadedFiles/IDSA/Resources/Lyme_Disease/Final_Report/IDSA-Lyme-Disease-Final-Report.pdf">download the final report</a> in its entirety or <a href="http://www.idsociety.org/Content.aspx?id=16499">access it online</a> from the IDSA website. The IDSA welcomes your <a href="http://www.idsociety.org/form.aspx?ekfrm=6384">comments</a>.<br /><br />The Connecticut Attorney General's Office has already issued a brief <a href="http://www.ct.gov/ag/cwp/view.asp?Q=459294&A=3869">statement</a> 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 <a href="mailto:attorney.general@po.state.ct.us?subject=IDSA%20Lyme%20Review%20Panel%20Final%20Report%20misses%20the%20mark">email</a>.<br /><br />This is a sad day indeed.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com4tag:blogger.com,1999:blog-6789664424959691903.post-62580356895221493312010-04-17T14:00:00.015-04:002010-04-22T23:49:05.361-04:00Spring cleaning<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis-u_QuG4nuIggMBz481KcrEzOOet3pRpxC_nfcMvMkI1PvKQfrz-AQqAKoQ38CNUJhLOBG9q1nc85ZOM8VAe5YRIlt1HbjRpNiOz9dpo0xeqpJBTG2d0RkjkQqYovhUYlA64k7XqEX6Y/s1600/Lyme+awareness+ribbon+355.jpg"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 166px; height: 246px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis-u_QuG4nuIggMBz481KcrEzOOet3pRpxC_nfcMvMkI1PvKQfrz-AQqAKoQ38CNUJhLOBG9q1nc85ZOM8VAe5YRIlt1HbjRpNiOz9dpo0xeqpJBTG2d0RkjkQqYovhUYlA64k7XqEX6Y/s400/Lyme+awareness+ribbon+355.jpg" alt="" id="BLOGGER_PHOTO_ID_5462055622655573250" border="0" /></a>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.<br /><br />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?<br /><br />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.<br /><br />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 <a href="http://www.winnipegfreepress.com/local/lyme-carrying-ticks-seen-early-91013754.html">Winnipeg Free Press</a>.<br /><br />During the March Total Health Show in Toronto, raw milk advocate Michael Schmidt (<a href="http://www.glencoltonfarms.com/">Glencolton Farms</a>) and constitutional lawyer Shawn Buckley (<a href="http://nhppa.org/">National Health Products Protection Association</a>) 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 <a href="http://www.vitalitymagazine.com/apr10_helkefeat">Vitality Magazine</a> includes a related article on the theme "Saying NO to Corporate Healthcare Fraud".<br /><br />Just last week, an article in the <a href="http://www.calgaryherald.com/health/Doctors+misdiagnose+Lyme+disease+researcher/2908675/story.html">Calgary Herald</a> 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.<br /><br />Also last week, Bryan Allen's <a href="http://www.am920.ca/program_schedule.php?area=show&show_id=35">AM940 talk show</a> focused on Lyme disease issues in Canada (you can download the 35 MB mp3 file <a href="http://docs.google.com/leaf?id=0B4cSQuGY-KWxMTJlZTQ3ZjUtZmQ1Mi00ZTQ5LWFmY2EtODQyNTBhZDQwMTVk&hl=en">here</a>). The 2-hour program included interviews with Jim Wilson (<a href="http://www.canlyme.com/">CanLyme</a> President), the renowned Dr. Ernie Murakami (<a href="http://www.murakamicentreforlyme.org/">Dr. E. Murakami Centre for Lyme Research, Education & Assistance</a>), Rossana Magnotta (<a href="http://www.magnotta.com/">Magnotta Winery</a> 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 <a href="mailto:talkshow@am920.ca">email</a>.<br /><br />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 <a href="http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284">Connecticut Attorney General's investigation</a> 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 <a href="http://www.idsociety.org/Content.aspx?id=15026">Guidelines Review section</a> 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.<br /><br />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 <a href="http://zoomerradio.ca/blog/schedule/weekdays/goldhawk-fights-back/">listen online</a> this Wednesday, April 21st, from 11:00am to 1:00pm.<br /><span style="font-weight: bold; font-style: italic;">***update***</span> You can download the 18 MB mp3 file from the radio broadcast <a href="http://docs.google.com/leaf?id=0B4cSQuGY-KWxOGRkZDY3NTMtNDAwNC00NjJhLTgyZTgtM2IyNDA4MTcwOTVh&hl=en">here</a>. Please drop a brief <a href="mailto:fightback@goldhawk.com?subject=thanks%20for%20the%20Lyme%20show%20/%20Goldhawk%20Fights%20Back">thank-you message</a> to Dale Goldhawk and encourage him to cover this subject matter further.<br /><br />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!<br /><br />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.<br /><br /><span style="font-style: italic;">"Never doubt that a small group of committed people can change the world. Indeed, that is all that ever has."</span> Anthropologist Margaret MeadLyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-88416170469737238612010-03-03T09:06:00.005-05:002010-03-03T10:51:45.394-05:00Total Health 10 -- "Our Health, Our Planet"<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxr0naN3NVtisYDe-nd8-YG0KuTyWlBOOz0bTvvHXZmKjwM0JDHZmO8k0xQ4pbSgSyU1oyYf_FkM6drlnLccOIQ5y9albWDE6pgP2HhfXJWldN6L6YvHcdqw39fVRikX4WNQgAbjH1Y0I/s1600-h/total+health+10.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 108px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxr0naN3NVtisYDe-nd8-YG0KuTyWlBOOz0bTvvHXZmKjwM0JDHZmO8k0xQ4pbSgSyU1oyYf_FkM6drlnLccOIQ5y9albWDE6pgP2HhfXJWldN6L6YvHcdqw39fVRikX4WNQgAbjH1Y0I/s400/total+health+10.jpg" alt="" id="BLOGGER_PHOTO_ID_5444416791526960994" border="0" /></a>It's that time of year again -- time for the 2010 <a href="http://totalhealthshow.com">Total Health Show</a>! "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.<br /><br />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 <span style="font-style: italic; font-weight: bold;">Ending Denial -- The Lyme and Chronic Disease Epidemic in Canada</span>. 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 <a href="http://www.kospublishing.com/">KOS Publishing</a> exhibition booth 215. Members of Lyme Action Group will be her guests at the booth. Please stop by and say hi!Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-2291676130598714062010-02-04T09:02:00.009-05:002010-02-07T19:13:12.214-05:00Something is rotten in the state of Denmark...<span class="blsp-spelling-error" id="SPELLING_ERROR_0">Ok</span>, altogether now... exhale.<br /><br />No, this isn't a commentary on the increasingly long list of <a href="http://www.financialsense.com/editorials/engdahl/2010/0122.html">climate change scandals</a> 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, "<span style="font-style: italic;">The </span><span style="font-style: italic;">Medieval Warm Period</span><span style="font-style: italic;"> doth not a hockey stick make, my dearest Horatio.</span>" Well, it went something like that. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Btw</span>, for a less reverent COP15 postmortem (perhaps one of the more intelligent deconstructions), check out <a href="http://www.youtube.com/watch?v=3_RlKxz_ymQ">Dr. Seuss at Copenhagen</a>.<br /><br />And another deep inhalation.... and out.<br /><br />Where were we? Oh yes. If you, like many others, have been holding your breath waiting for the much anticipated results of the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">IDSA's</span> new-and-improved Lyme guidelines review panel, apparently we should stop. Last year, the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">IDSA</span> 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.<br /><br />Or at least it was.<br /><br />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 <a href="http://lymeactiongroup.blogspot.com/2009/01/ct-attorney-general-versus-idsa.html">antitrust investigation</a> concluded in 2008. It appears the panel manipulated the voting procedures in order to favour the status <span class="blsp-spelling-error" id="SPELLING_ERROR_4">quo</span> of the existing guidelines. The Attorney General is not amused. A package, including a preamble from Lorraine Johnson's <a href="http://www.lymedisease.org/news/lymepolicywonk/336.html"><span class="blsp-spelling-error" id="SPELLING_ERROR_5">LymePolicyWonk</span></a> blog, the Attorney <span class="blsp-spelling-error" id="SPELLING_ERROR_6">General's</span> letter (begins on page 3), an <span class="blsp-spelling-error" id="SPELLING_ERROR_7">IDSA</span> 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 <a href="http://docs.google.com/fileview?id=0B4cSQuGY-KWxNDM5MGUxMzEtMWYxYS00N2RmLWJhYzUtNTgyODM4OGI0NDgw&hl=en">here</a>.<br /><br />The Attorney <span class="blsp-spelling-error" id="SPELLING_ERROR_8">General's</span> 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.<br /><br />Elsewhere in cyberspace, there is some interesting reading on the website of the <a href="http://www.aldf.com/index.shtml">American Lyme Disease Foundation</a> (<span class="blsp-spelling-error" id="SPELLING_ERROR_11">ALDF</span>). Much like the <span class="blsp-spelling-error" id="SPELLING_ERROR_12">IPCC's</span> one-sided "debate" on climate science, the <span class="blsp-spelling-error" id="SPELLING_ERROR_13">ALDF</span> has traditionally been an excellent place to visit for a very one-sided view of the world of Lyme disease (i.e. the narrow <span class="blsp-spelling-error" id="SPELLING_ERROR_14">IDSA</span> perspective). In fact, the gentleman who headed the 2006 <span class="blsp-spelling-error" id="SPELLING_ERROR_15">IDSA</span> Lyme guidelines panel is a member of the <span class="blsp-spelling-error" id="SPELLING_ERROR_16">ALDF</span> Board of Directors. In that context, it was somewhat disconcerting to read the following under the heading of "<a href="http://www.aldf.com/lyme.shtml#treatment">Treatment</a>":<br /><br /><span style="font-style: italic;">"Although treatment approaches for patients with late-stage <span class="blsp-spelling-error" id="SPELLING_ERROR_17">LD</span> have become a matter of considerable debate, many physicians and the <span style="font-weight: bold;">Infectious Disease Society of America </span>recognize that, in some cases, several courses of either oral or IV (depending on the symptoms presented) antibiotic treatment may be indicated.</span>"<br /><br />Since when does the <span class="blsp-spelling-error" id="SPELLING_ERROR_18">IDSA</span> 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.<br /><br />Amidst this confusing crosstalk, could this be a sign the <span class="blsp-spelling-error" id="SPELLING_ERROR_19">IDSA</span> is preparing to soften its position?<br /><br />In the meantime, keep breathing.Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com0tag:blogger.com,1999:blog-6789664424959691903.post-57905052250751289882009-11-25T10:15:00.013-05:002009-11-26T21:44:48.692-05:00W5: "Out of the Wild"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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">CTV</span> on November 14<span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span>, is titled "<span style="font-weight: bold; font-style: italic;">Out of the Wild: Why some Canadian do</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp6f1UNOU4EejOAMgWUx10A16NAwB3P7wDGcTpG6b1b01GIqy27TrRfsBL886NZCid_f-1ySSw6i5eOMtmrZ8NWgqQvjgvyNNXiJLkTaYEQJFQOQyAWJpOfihcJ5BBKUFxXaChCiB2Rw0/s1600/W5+out+of+the+wild.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 226px; height: 126px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp6f1UNOU4EejOAMgWUx10A16NAwB3P7wDGcTpG6b1b01GIqy27TrRfsBL886NZCid_f-1ySSw6i5eOMtmrZ8NWgqQvjgvyNNXiJLkTaYEQJFQOQyAWJpOfihcJ5BBKUFxXaChCiB2Rw0/s400/W5+out+of+the+wild.jpg" alt="" id="BLOGGER_PHOTO_ID_5408096093466199362" border="0" /></a><span style="font-weight: bold; font-style: italic;">ctors are misdiagnosing a crippling disease caused by a shape-shifting <span class="blsp-spelling-error" id="SPELLING_ERROR_2">superbug</span> --</span><span style="font-weight: bold; font-style: italic;"> <span class="blsp-spelling-error" id="SPELLING_ERROR_3">unti</span></span><span style="font-weight: bold; font-style: italic;">l it's too late</span>".<br /><br />You can watch the <a href="http://watch.ctv.ca/news/w5/out-of-the-wild/">Out of the Wild episode</a> from the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">CTV</span> video library. The written story can also be found on the W5 website, "<a href="http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091113/w5_lyme_091114/20091114?s_name=W5">W5: Why are crippling Lyme disease cases being misdiagnosed</a>".<br /><br />This investigative look at Lyme disease across our country focuses on the experiences of 3 patients: Nicole Bottles of Victoria, Ed <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Sperling</span> of Calgary, and David <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Leggett</span> 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.<br /><br /><span style="font-weight: bold; font-style: italic;">"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."</span> W5's conclusion about the threat of Lyme disease to public health? The medical community has failed to take it seriously. <span style="font-weight: bold; font-style: italic;">"Thousands of Canadians who are afflicted are often told there is nothing wrong with them, that they're delusional, or psychotic"</span>. 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.<br /><br /><span style="font-weight: bold; font-style: italic;">"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."</span><br /><br />Professor George <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Chaconas</span>, 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. <span style="font-weight: bold; font-style: italic;">"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."</span><br /><br />Jim Wilson, president of the <span style="font-style: italic;">Canadian Lyme Disease Foundation</span>, sums it up this way: <span style="font-weight: bold; font-style: italic;">"The enemy here is ignorance, it's arrogance..."</span>. A Lyme patient himself, he sees hundreds of patients across the country driven to desperation by <span style="font-weight: bold; font-style: italic;">"woefully uninformed doctors"</span>.<br /><br />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 <span style="font-weight: bold; font-style: italic;">"not a priority"</span> for our medical establishment.<br /><br />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 <a href="mailto:ccu.moh@ontario.ca?subject=Lyme%20disease:%20our%20medical%20community%20does%20not%20have%20its%20priorities%20straight">Ontario Minister of Health</a> and our <a href="http://www.hc-sc.gc.ca/contact/ahc-asc/minist-eng.php">Federal Minister of Health</a>. Be sure to contact your own elected representatives as well.<br /><br />Thank you to the W5 team for their outstanding work, including <span class="blsp-spelling-error" id="SPELLING_ERROR_8">CTV's</span> Richard <span class="blsp-spelling-error" id="SPELLING_ERROR_9">O'Regan</span>, Maria <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Dartis</span>, Paula Todd, and <span class="text">Sandie Rinaldo</span>. Please drop W5 an <a href="mailto:w5@ctv.ca?subject=W5:%20why%20are%20crippling%20Lyme%20disease%20cases%20being%20misdiagnosed?">email</a> 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.<br /><br />Now it seems not everyone holds W5's award-winning journalistic efforts in the same high regard. This <a href="http://www.chrgonline.com/news_detail.asp?ID=123098">press release</a> was issued recently by the <span style="font-style: italic;">Association of Medical Microbiology and Infectious Disease Canada</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_11">AMMI</span>). The <span class="blsp-spelling-error" id="SPELLING_ERROR_12">AMMI</span> considers it unfortunate that the W5 story <span style="font-weight: bold; font-style: italic;">"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]..."</span>. Well... Nicole, Ed, and David, and countless other Lyme patients across our country, may have something to say about those earnest efforts too.<br /><br />The <span class="blsp-spelling-error" id="SPELLING_ERROR_13">AMMI's</span> position is oddly reminiscent of that from the <span style="font-style: italic;">Infectious Diseases Society of America</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_14">IDSA</span>). The <span class="blsp-spelling-error" id="SPELLING_ERROR_15">IDSA's</span> scientifically indefensible position that Chronic Lyme disease does not even exist (see earlier post <a href="http://lymeactiongroup.blogspot.com/2009/08/idsa-hearing-on-lyme-washington-dc.html"><span class="blsp-spelling-error" id="SPELLING_ERROR_16">IDSA</span> hearing on Lyme - Washington, DC</a>) 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_17">IDSA</span> to find out what on earth was going on. That <a href="http://www.ct.gov/AG/cwp/view.asp?a=2795&q=414284">investigation</a> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_18">IDSA</span> guidelines panel by year end.<br /><br />The <span style="font-style: italic;">Canadian Lyme Disease Foundation</span> also had a few things so say about the <span class="blsp-spelling-error" id="SPELLING_ERROR_19">AMMI's</span> recent press release. For your reading pleasure, you can find their rebuttal <a href="http://www.chrgonline.com/news_detail.asp?ID=123230">here</a>.<br /><br />From the <span class="blsp-spelling-error" id="SPELLING_ERROR_20">AMMI</span> website: <span style="font-weight: bold; font-style: italic;">"<span class="blsp-spelling-error" id="SPELLING_ERROR_21">AMMI</span> 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."</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Hmmm</span>... <span class="blsp-spelling-error" id="SPELLING_ERROR_23">ok</span>. But who is representing the interests of Canada's Lyme patients?Lyme Action Grouphttp://www.blogger.com/profile/08062929658117009218noreply@blogger.com4