Family Medicine Matters Blog

The OCFP Blog discusses current topics and invites members to share their perspectives and ideas, and engage in a dialogue.

Lyme Disease: Keeping it Top of Mind

July 7, 2016

Updated Aug. 3, 2016:
When this blog was originally posted a two requisition process for tick identification and tick testing was used by PHO and the National laboratory in Winnipeg.  This process has been simplified to allow both identification and testing of black legged ticks using a single requesition. Please see the section titled "Once the tick is removed” for the updated information.

Updated July 28, 2016:

Since this blog was posted on July 7, it has received several comments about areas that are seen to be controversial. In particular, the issues of duration of tick attachment prior to transmission of B. burgdorferi and the duration of prophylaxis are areas where evidence is evolving. In this blog, the evidence and information reviewed by the MOHLTC through a Lyme Stakeholder group, and the information endorsed by Health Canada was identified as the most appropriate to guide us. There have been several comments left in the comments section, some of which reference the ILADS guideline which is seen by some to be more up to date. While it is true that it was completed in 2014, (the IDSA guideline is now almost 10 years old) no public health nor infectious disease organization has endorsed the ILADS guideline. Why? There has been concern expressed about the science of the studies included in the guideline review.

As family physicians we find ourselves in a not unfamiliar situation of needing to make clinical decisions with incomplete information to guide us. We will need to continue to use the information available to us, along with our clinical judgement and an exploration of patients values in treatment decisions. It is anticipated that further review of the evidence will be undertaken by appropriate agencies and that will be available to guide us more clearly in the coming years.

Note: The section on prophylaxis and treatment has been updated with minor clarifications. My thanks to Dr. Doug Sider, Medical Director, Communicable Disease Prevention and Control, Public Health Ontario, for his contributions to the information shared in this page.


'Tis the season to think about Lyme disease – prevention, tick removal and early diagnosis and management.   

As family physicians, we have a key role in sharing information with patients to help to prevent tick bites and the risk of Lyme disease, as well as to diagnose it as early as possible.

As has been the case over the past couple of years, at our clinic in Marathon, Ont., we have already had our first questions from patients: “I had a tick bite and brought the tick in.... Is this a “Lyme tick”?  or “I have this new rash and a friend said that it could be from a tick bite... what do you think?” These questions are sometimes challenging, but there are more up-to-date resources to help to support us to provide the best answers we can for prevention, diagnosis and early treatment in particular.

Lyme disease incidence is on the rise in Ontario and is a particular issue from May to as late as November. Black legged ticks (I. scapularis) that carry the Lyme disease bacteria Borrelia burgdorferi live in grassy and weedy areas, but also increasingly in wooded areas, and because part of their life cycle is lived with migratory birds, their territory can increase quickly. While there are areas that are considered endemic, B. burgdorferi carrying ticks can actually be found across Ontario, including in urban centres.

Public Health Ontario has a good surveillance map that highlights areas of greater risk.  

Prevention

Image of Lyme disease fact sheetIdeally we can help our patients avoid Lyme disease in the first place by supporting awareness and education. There is a lot of great information for patients in Ontario that is regularly updated on the Ontario.ca/lyme site which links to other useful sites.

This pamphlet on prevention may be really helpful for patients and we should consider having a few copies in our waiting rooms, or on our clinic website. Download the complete fact sheet.

Tick Removal: Some people find this simple infographic from the Centre for Disease Control a bit easier to understand than the colour picture in the pamphlet attached above. The most important part of tick removal? Get the whole tick. Following removal of the tick, cleansing the bite site with soap and water or rubbing alcohol is recommended.

Once a tick is removed: Not sure what to do once the tick is removed?

Sometimes patients may bring the tick to the office to have you look at it. There are a few steps to take to determine if a tick is a Lyme disease carrying tick and this is where I find it gets a bit tricky.

It is important to note that if you want the tick to be identified AND to have it tested for B. burgdorferi, then a Surveillance Form for Tick Identification must be completed. If the tick is identified as a blacklegged tick, it will be sent to the National Microbiology Laboratory, in Winnipeg, for B. burgdorferi testing.

Tick identification helps our public health colleagues track the tick populations and monitor for the prevalence of B. burgdorferi in the blacklegged ticks. It is important to know that diagnosis should be based on clinical judgement and not based on tick testing through public health labs.


 

Diagnosis

Beyond the Bull’s Eye: Most of us are familiar with the expanding skin rash, however it is important to note that it is NOT always a “classic target lesion”. The rash usually begins within 7 days  of the tick bite but may vary between three and 30 days after exposure. The rash usually grows in size for several days.

I found the Health Canada site really helpful because the images helped broaden my understanding of what I should be looking for and the importance of thinking beyond the “target lesion”. It’s worth having a look at the sample images on the site to remind yourself of the varied types of rash

Other Symptoms: Many people who develop Lyme disease do not have, or may not notice, a preceding rash so we need to rely on other symptoms to identify early Lyme disease. Other early symptoms can include fever, chills, headache, fatigue, muscle and joint aches and swollen lymph nodes.

Early diagnosis and treatment is important. Typically symptoms will develop within 2 weeks, but may not appear until 4 weeks after the bite.  If it is not recognized and treated in the early (acute) phase, it may be months later that late symptoms develop.

Later stage disease can include many other symptoms like dysrhythmias, shortness of breath, and neurological symptoms including balance and short-term memory impairment as well as extreme fatigue and weakness.

Again, the Health Canada website has great information about symptoms and their timing.

Image of Sample PHO Test Requisition for Lyme SerologyTesting: The diagnosis of Lyme disease, especially in the early stage is a clinical diagnosis. Testing is to be seen as supportive only. This is because false negative test results are common in the disease's early stages as Borrelia burgdorferi specific antibodies may not be demonstrated in a patient's serum.

There is good information about serologic testing on page 16 of this Public Health Ontario document.

If you do serologic testing, the public health lab requisition should be completed generally as shown in the samples (click image to enlarge).

Blank copies of the general public health lab requisition are here.   

Treatment guidelines:

One of the most common questions family physicians are asked is whether antibiotics should be started at the time of identification of the black legged tick (I. scapularis tick). The best advice is that prophylaxis be considered if: 

  • the patient was in an endemic area
  • was engaged in activities like hiking or camping
  • if the tick was engorged after  being attached for at least 36 hours
    • It is worth noting however that the risk of transmission increases with increasing duration and the risk of transmission is not zero before the 36 hour mark.
  • prophylaxis is contemplated within 72 hours of removal of the tick.


Details of prophylaxis can be found in a CDC referenced resource which suggests that a single dose of doxycycline 200mg can be used in adults. The paper offers further information for pregnant women and children. 

As the incidence of Lyme disease following tick bite is low overall (estimated at 3%)  and it can be difficult to know the exact tick attachment time, etc., it is also reasonable to watch and wait rather than offer prophylaxis. With the watchful waiting approach, we must be committed to close follow up of patients who identify an expanding rash at the tick bite site with or without flu-like symptoms. For those patients appropriate curative antibiotic treatment for the diagnosis of early localized Lyme disease can be initiated.

Treatment for early disease, for both adults and children, with either doxycycline, amoxicillin or cefuroxime for 2-3 weeks, is well laid out in the treatment chart on the Health Canada site.  


Management of late disease is controversial
and we are advised to seek consultation for the question of late Lyme disease management.

Let’s support each other to provide great Lyme disease prevention and early disease treatment through this season!

At the OCFP ASA this fall, there will be a session on Lyme Disease. To help inform the presentation and ensure that your questions are answered, please feel free to send your questions to me either now or as the summer season evolves and I will ensure that they are provided to the session presenters. Email me at president@ocfp.ca.

Additional Resources:


Please note that the OCFP does not endorse any of the opinions expressed in the comments section, nor has it reviewed any of the links/resources included in responses.

20 comments

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  1. Debra Fraleigh | Aug 17, 2016

    Dear Dr. Sarah Newbery,

    On July 18th I suggested that you and all OCFP members who are interested in learning more about Lyme disease register for Dr. Elizabeth Maloney's course presentation being held in Indiana. More information about the original course and Dr. Maloney can be found in my post below.

    This presentation is now available free through vimeo. I believe CME credits are no longer being offered. Nonetheless, Ontario family physicians could certainly benefit from viewing this presentation.

    Diagnosing Lyme Disease: Clinical Strategies for Disease Detection presented by Dr. Elizabeth Maloney

    https://vimeo.com/178659294

    Individuals who view Diagnosing Lyme Disease will:

    - Understand the epidemiology of and risk factor assessment

    - Know the basic pathophysiology of early and late disease stages

    - Recognize common presentations

    - How to evaluate patients

    - Understand the role of serologic testing in the diagnosis

  2. Sarah Newbery | Aug 03, 2016

    One of the benefits of a blog like this is the opportunity to hear the concerns of patients as have been expressed here. As we learn more about Lyme disease and its impact on patients, the importance of pulling together the very best evidence for effective treatment becomes even more compelling. As physicians we have a responsibility to balance the benefits of treatment with the risks of harm from the treatment itself.

    As family physicians we continue to learn from our patients' experience and perspective and I am thankful that you have shared your challenges, frustrations and insights here. As the OCFP we will continue to work with our partners to support family doctors with this very challenging condition for patients.

  3. Susan F | Aug 02, 2016

    Get It Right - Treat the Bite!

    effective treatment guidelines

    https://sites.google.com/site/getitrighttreatthebite/ticks/treat-the-bite

  4. D. A. Noble | Aug 02, 2016

    Dear Dr. Sarah-Lynn Newbery:

    Thank you for your attempt to bring increased Lyme Disease awareness to the community. Unfortunately, what you have provided, may be regarded as dis-information, out-dated, and clouded by years of conflicts of interest, by most who have been afflicted with Lyme Disease in Ontario. (see NGC references, as noted above) 

    It is not without dire consequences, that an increasing number of Ontarians are facing a life of debilitating illnesses, resultant of these current standards and the use of irrelevant guidelines, which have been publically revoked. As a Chronic Lyme (35+ yrs and growing) sufferer, I can attest to the fact that Lyme disease has been mis-diagnosed in Ontario for decades.  Being previously diagnosed and somewhat treated for seizures, arthritis, muscle atrophy, allergies, asthma, migraine headaches, chronic fatigue, hyper/hypotensive episodes, ADHD, Dementia, hypothyroidism, various skin abnormalities (never a bull's eye rash), various eye problems (drainage, floaters, etc.) revolving pain, sciatica, heart beat irregularities (dysrhythmias), swallowing difficulties (dysphagia), alopecia, skin crawling, urinary incontinence, unexplained bruising, to name a limited number of  symptoms.   “Lyme Disease Victims", innocently suffer as a direct result of lack of adequate diagnosis and treatment as a result of the inaccurate information physicians are plagued with and confused by.

    As a recent casualty of a new tick bite – in addition to a history of Chronic Lyme;  a Family Practitioner offers a one-day, 200 mg course of Doxycycline, resultant of current supported Guidelines in Ontario. Due to my history, I consider this nothing short of negligence.  This is clearly reprehensible, as Ontario guidelines lack treatment guidelines for those currently suffering with Chronic Lyme; predictably resulting in an escalation of uncertainty and a delay of adequate treatment.

    It is obvious, that such current guidelines will only serve to broaden the erroneous knowledge that doctors, unskilled with Lyme disease, possess and the critical bias applied towards ILADS research, will undoubtedly result in years of disability, suicides, and death. 

    Dissimilar to ILADS, Ontario Guidelines follow but one research model (see below) for a "one" dose Doxycycline 200mg regimen, as a measure to cure/prevent of Lyme Disease --based solely on the occurrence/non-occurrence of extra-cutaneous/ skin reaction or rash. This "One Antibiotic Dose", reducing the occurrence of a rash, was “thought to be’ reflective of Lyme disease being cured.  When additional facts are considered: (and these numbers vary) on average, less than 30%of Lyme infected victims present with the typical (extra-cutaneous) rash, myself included; I would appreciate an explanation, as to how a reduction in such rash occurrence can be reflective of Curing Lyme Disease? http://www.hopkinsarthritis.org/arthritis-info/lyme-disease/lyme-disease-treatment/

    In a study by Nadelman, et.al., they compared treatment with placebo versus a single 200-mg dose of doxycycline in 482 subjects who had removed attached I. scapularis ticks from their bodies within the previous 72 hours. Erythema migrans developed at the site of the tick bite in a significantly smaller proportion of the subjects in the doxycycline group than of those in the placebo group (1 of 235 subjects [0.4 percent] vs. 8 of 247 subjects [3.2 percent], P<0.04). The efficacy of treatment was 87 percent (95 percent confidence interval, 25 to 98 percent). Objective extracutaneous signs of Lyme disease did not develop in any subject, and there were no asymptomatic seroconversions. These data suggest that a single 200-mg dose of doxycycline given within 72 hours after an I. scapularis tick bite can prevent the development of Lyme disease.

    As noted in earlier response; I agree that transparency of all Lyme disease scientific research be made available and their sources be required to support their research findings in public forum.  Making “innuendos and unsubstantiated statements” does not constitute “accuracy nor truth” it only propagates misinformation and the lack of scientific evidence.  Scientific data requires a scientific researcher, the data obtained from the research undertaking, and how it was obtained; thereby allowing others the opportunity to ‘challenge’ the outcome.  Statements made, other than in a scientific format,  serves only to propagate misinformation and chronic disability.   It appears reasonable to question a researcher that is unwilling or unable to substantiate their claims – as the credibility of their research should be immediately disregarded.

    I must agree that “it is Assumed” that our highly trained physicians have the autonomy to make their own decisions, based on the facts and knowledge, and in collaboration with their patients.  Regrettably, most doctors are uninformed or ill-informed regarding Lyme Diseases, and tend to evade collaboration, as I have found; in order to avoid conflict and abide by “current guidelines”.   

    Guidelines are suggested rules or procedures, which physicians feel obligated to follow in order to avoid future consequences. Therefore, it is the inaccurate guidelines that serve to promote Lyme Disease; as part of a Lyme community and as a resident of Ontario, I request that the sponsors of such inappropriate guidelines be held responsible and accountable for their actions and that ILADS guidelines be implemented until adequate, irrefutable scientific research becomes available.  

    In addition to the sub-standard Lyme disease treatment guidelines, seemingly inherent of the aforementioned “conflicts of interest” attributed to the IDSA; I feel it prudent to relay additional information regarding potential co-Infections of Lyme disease, which may present independently on non-Lyme carrying ticks, as  with Rocky Mountain Spotted Fever; another disease which “may or may not” present with a rash, has crossed the borders into Canada.   http://www.mayoclinic.org/diseases-conditions/rocky-mountain-spotted-fever/basics/symptoms/con-20032780 .  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2655481/table/t1/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2655481/

    It is a gross injustice to assume that only one species of tick is guilty of carrying any or all disease.  We are provided a false sense of security when bitten by a tick, other than the black-legged variety.  Advised that “it’s not a Lyme carrying tick”, we expel a sigh of relief.  However, many ticks carry co-infections which remain untested, un-reported, and un-treated.  In 2015, a Nova Scotia University reported Rocky Mountain Spotted Fever in 60% of dog ticks tested.  Additionally, in a report from 2009, RMSF was also found to be in Ontario, Saskatchewan, and Alberta.  Unfortunately, this disease remains ‘non-reportable’ in Canada, making it difficult to comprehend the extent of this illness as of today.  As evident with non-reporting, we have a false sense of security that  RMSF does not exist in Canada, and our devout medical professionals decline to spend valuable health care dollars on the diagnosis of a disease that, otherwise doesn’t exist, let alone treat an illness prophylactically based solely on a tick bite history.  Unfortunately, people do travel to endemic areas; birds, deer and rodents do cross borders; spreading tick borne illnesses to non-endemic areas, shaking pin-head nymphs off during their travels.  None the wiser, we see no excuse for our progressing illnesses, and take our medicine as directed, with never a hope for cure.   We struggle to survive.  Attempt to work, to little avail, our bodies disintegrating before our eyes; difficulty walking, talking, hearing and simply living becomes a chore, frequently unbearable symptoms prevent us from moving at all.  Some push through, with hope of a better tomorrow.  Others wish for the day they will no longer wake up.

    If you truly wish to put ‘Patients First’ as we continue to hear – then ‘NOW’ is the time to start listening to the Patients?  A diversified disease will require diversified information, who better than the patients that live with these illnesses daily and those doctors who possess the humanity and dedication to help treat it?  How can any doctor, who has never successfully treated Lyme disease, dictate how Lyme Patients are best treated? 

  5. Debra Fraleigh | Jul 29, 2016

    Dear Dr. Sarah-Lynn Newbery, 

    I would also like to thank you for your most recent update (28 July 2016) to this blog. However, (as two prior commentators have also mentioned), your current post regarding the ILADS guidelines, along with the justification for not including these guidelines among the resources offered to your members, are very disturbing. 

    To have written, "There has been concern expressed about the science of the studies included in the guideline review", seems very simply to be an attempt to cast unwarranted doubt and aspersions on the scientific validity of the references used in these guidelines and thereby discredit both those studies and the resulting guidelines. Innuendo and unsubstantiated statements from any source do not constitute evidential scientific proof (or any proof at all) that those 'concerns' are valid or have any basis in truth. Unfortunately, statements such as the one you wrote provide no details to back up the claim and no opportunity for rebuttal.

    If there are particular concerns with regard to the referenced studies included in the guidelines, these worries should be delineated publicly and fully explained by whomever expressed them. Additionally, they should be published so that the appropriate authors are  provided with an opportunity to respond. That would be the correct way to advance (or resolve) a scientific argument.  If the source of this concern is not prepared to support their claim with specific details of the studies they are challenging and provide alternate scientifically arrived at facts, neither their concern nor their claim can be considered credible. 

    As an additional source of information for OCFP members, you might include a link in your blog entry to  the newly published Ministry of Health  "Combating Lyme Through Collaborative Action: Ontario’s 10-Step Education and Awareness Plan". This is available from:  

    http://www.health.gov.on.ca/en/common/ministry/publications/reports/lyme_16/lyme_actionplan2016en.pdf

    Many thanks for continuing this dialogue and for advancing awareness of Lyme disease (along with patient's concerns) to Ontario's family physicians. 

  6. Jane Bailey | Jul 28, 2016

    Dear Dr Sarah-Lynn Newbery

    Thank you for your most recent update (28 July 2016) to your blog of 7 July 2016.  

    However, under pressure (no doubt) from Health Canada, Public Health Agency of Canada, etc... you state that the ILADS Lyme Disease guideline has some concerns regarding the science of the studies in the guideline review.  This might the the "belief" of some Public Health officials, and those infectious disease specialist who insist on conforming to the CDC/IDSA dogma, but I can assure you that believing something to be true does not make it so.

    I would now like to draw your attention to some indisputable facts concerning the IDSA and the ILADS Lyme Disease Guidelines by directing you to the July 2016 print edition of the Canadian Medical Association Journal - the text of which is as follows:

    "The National Guideline Clearinghouse (NGC) is a federal agency of the United States Department of Health and Human Services responsible for providing the most up-to-date clinical guidelines to physicians.   The NGC also removes those clinical guidelines that are no longer relevant, do not meet the requirements and standards of the Institute of Medicine Grading of Recommendations Assessment, Development and Evaluation (GRADE) requirements, and/or have not been revised in the last five years.  

    In January of this year, the NGC removed the Infectious Diseases Society of America (IDSA) Lyme Disease Guidelines.  These guidelines were removed for the reasons stated in the previous paragraph.

    In a scathing report on the standard of clinical guidelines in North America, the IOM specifically referenced the IDSA Lyme Disease guidelines as a prime example of what not to do.  

    The ONLY evidence-based, peer reviewed, conforming to (and exceeding) IOM clinical guideline standards, Lyme disease guidelines now available on the NGC web portal for Lyme Disease, is the International Lyme and Associated Diseases Society (ILADS) Lyme Disease Guidelines."  (The citation for this is - doi:10.1503/cmaj.1150107CMAJ July 12, 2016 vol. 188 no. 10 754-755  and the link is -  http://www.cmaj.ca/content/188/10/754.3.full )   

    It is assumed, that our intelligent, highly trained, and critically-thinking doctors have the autonomy to make their own clinical decisions based on facts, their clinical knowledge and expertise, and in collaboration with their patients.  Anything less would be an affront to our doctors, and to our patients.

    Continued adherence to the IDSA outdated, sub-standard, opinion-based, and non-conforming to the Institute of Medicine’s national criteria for clinical guidelines, cannot be scientifically or medically upheld, and is an absolute travesty and disservice to (and for) the medical professionals and citizens of Canada. 

  7. Rob Murray | Jul 28, 2016

    Those proposing that there are scientific doubts behind the ILADS 2014 Lyme disease guidelines that have been accepted by the National Guidelines Clearinghouse are not scientists but physicians with an agenda and they are hoping that their new IDSA guidelines, which aren't expected for another 2 to 5 years will be accepted and approved.  We have agreed to follow the lead of the CDC in Canada and the CDC has refused to do the right thing and remove the old, and now unapproved IDSA guidelines from their web site.  They have ignored due process.  If one follows the money it becomes clear why they wish to retain/ regain control and have guidelines that are set in stone and are not particularly patient centred.  We really need our own made in Canada guidelines because the agenda driven IDSA guidelines are strongly linked to shareholder value and the financial health of U.S. for-profit private health insurance companies.  The IDSA and AMMI here in Canada have developed a test that few can pass and then confused the test with the actual disease.

    This is a complex clinical disease and the diagnosis and treatment limitations should't be made by 3rd party lab people who aren't familiar with the case and who haven't examined the patient.  The shocking thing is that we are missing 90% of the cases according to the CDC's own calculations.  Multiply the 719 cases of lab confirmed cases of Lyme disease found in Canada in 2015 by 10 to get a very realistic picture of what the true incidence is.  Dr. Betty Maloney is on the right course to helping correct this disgusting situation.

  8. Debra Fraleigh | Jul 18, 2016

    Dear Dr. Sarah-Lynn Newbery, 

    Thank you for providing Ontario's family practitioners with some critically important information on Lyme disease and for acknowledging that you will continue to review and update this piece. Hopefully over time, the information you supply will ultimately reflect a more balanced view that will truly allow for patient-centered care. I appreciate that  you understand the need to provide this message to OCFP members and believe that it will greatly heighten physician awareness that without an accurate, early diagnosis, Lyme disease can lead to debilitating consequences and hardship for patients.

    In addition to the many concerns expressed in this comments section by patients, I would like to emphasize that enhanced physician education and training is the key to making sure that patients are diagnosed and properly treated as early as possible. It is encouraging to see that the OCFP ASA in late November will include a session on Lyme disease. Patients and their experts will hope that this venue and the presenters will provide an opportunity for diverse perspectives with regard to diagnosis and treatment to be evaluated by attendees. As this event is still a number of months away, I would like to let you and your members know that  there are other educational venues available currently and would encourage everyone to take advantage of them. 

    This week on Thursday, July 21, 2016 a course is being offered by Dr. Elizabeth Maloney with credits available as a CME activity. Although this presentation will be held in Indiana, it is also available via video streaming and would be an excellent opportunity for physicians to learn about Lyme diagnosis. There is no charge for the course which is an extra incentive for clinicians to participate.

    Dr. Maloney is a family physician from Wyoming, MN.  She graduated from the University of MN Medical School and completed her residency in family medicine at the University; she has been a family practice physician for greater than twenty years.  Dr. Maloney has authored accredited, evidence-based CME courses on Lyme disease for primary care physicians.  She is a member of the American Academy of Family Practice, the MN Academy of Family Practice, as well as the International Lyme and Associated Diseases Society and was a co-author of their Lyme Guidelines currently available through the National Guidelines Clearinghouse (NGC). Dr. Maloney was also one of the presenters at the Federal Conference on Lyme disease held in Ottawa during May. 

    In this course, "Diagnosing Lyme Disease: Clinical Strategies for Disease Detection", CME accreditation is through the AMA and participants will learn the following re: Lyme disease:

    Understand the epidemiology of and risk factor assessment

    Know the basic pathophysiology of early and late disease stages

    Recognize common presentations

    How to evaluate patients

    Understand the role of serologic testing in the diagnosis

    Further details and registration are available from:

    http://www.medicalacademiccenter.com/courses/diagnosing-lyme-disease-clinical-strategies-for-disease-detection/

    In addition, Dr. Maloney has produced two physician CME Lyme disease on-line education modules which are available free of charge through: http://www.lymecme.info/

    LymeCME.info currently has two modules up and running: “Managing Blacklegged Tick Bites” and “Case Studies in Early Lyme Disease.” Both modules offer Dr. Maloney's scientific analysis of the evidence and describe how this information is relevant to patient care. Accreditation is through the American Academy of Family Physicians. 

    According to the Canadian Medical Association website page regarding continuing professional development, "Bilateral reciprocal accreditation agreements exist with the American Medical Association and the American Academy of Family Physicians." Therefore, Canadian participants should be able to take advantage of not only enhancing their knowledge of Lyme disease through any or all of these courses, but also can claim applicable credits for doing so. 

    https://www.cma.ca/En/Pages/continuing-medical-education.aspx#

    Thank you for recognizing the need for our front-line doctors to have access to the most up-to-date scientifically based information on Lyme disease possible. 

  9. Elizabeth Rogers | Jul 16, 2016

    Thank you for at least making Lyme Disease important enough to warrant a guideline.  Unfortunately, it is not correct in many areas as compared to other provincial practices.  Following is a list of areas that need to be changed, immediately.  All have been backed up with evidence based and,  more importantly, patient reality:

    1.  Tick transmission can take place within 15 minutes of attachment

    2.  The incidence of lyme disease in Ontario and elsewhere is not low.  It is the Dr's reporting that is low.  They cannot and will not report that which they can't or won't diagnose.  For this reason, most lyme patients are diagnosed and treated out of country, the numbers, of which are never captured.

    3.  Incidence of infected ticks is far greater than maps show.  Again, you can't report what you don't measure and formal and informal tick surveillance is limited at best.

    4.  No other province uses the "1 doxycyclene 200mg" lyme disease treatment guideline.  As Lyme bacteria has a 30 day life cycle, it is foolish to think 1 pill will abolish the disease.  Even standard preventative treatment in all other provinces is 3-4 weeks.  Add to that the CDC guidelines have been removed from the NIH listing due to being outdated, it is absolutely foolish to regurgitate these guidelines as being a basis for treatment.

    5.  Dr. Aoki, the Lyme Disease ID "guru" in Manitoba has publically stated that while he believes our Cdn testing to be accurate, THE RESULTS MAY BE FLAWED BASED ON WHEN THE TEST IS TAKEN.

    6.  Deer ticks can survive all year round, not just in spring and summer.

    7.  Chronic lyme disease is becoming an epidemic and the reason for that lies clearly with the flawed Family Physician's guidelines and the Family Gp's inability to diagnose.

    8.  Lyme Disease patients will no longer tolerate a "wait and see approach".  They know better and have access to much more up to date information than obviously the College does.  Add to that, new articles coming out to inform taxpayers of the emotional, physical and financial cost to the health care system, the general public is now becoming concerned and questioning the medical system's ability to deal with the crisis.

    9.  When any profession continues to perpetuate a problem to the point of crisis, the government always steps in.  An angry public costs the government votes and they will not allow that to happen no matter how powerful the medical system believes themselves to be.

    10.   Advising Family Dr's to go to the CanLyme site for information is great and as it should be, however, given that CanLyme, mostly disagrees with posts such as yours, you have now created confusion for your Family Physicians.  I see that as being a "cover your butt" action that will be used in the long term to justify what you know to be current misinformation.  Just as the legal system has been a source of contention and the butt of jokes by the general public, so is going the medical system.  Unfortunately, for those who have or will be struck by lyme disease, the jokes are true and, definitely, not funny.

  10. Sarah Newbery | Jul 15, 2016

    Thank you so much to all of you who have contributed a comment here and highlighted the ILADS guidelines.  I will work on further reviewing and updating the information in this piece, and am grateful to you for taking the time to read and provide your information, opinions and insights. 

    Thank you also to all those of you who have commented on the importance of family physicians in this clinical issue - indeed family physicians are most often the front line providers for care and decision making for patients with questions about ticks, rashes and unexplained symptoms.  We will continue to work hard to ensure that family physicians are equipped to provide the best care that we can.

  11. Jennifer Kravis | Jul 15, 2016

    Dear Dr. Sarah Lynn-Newbery 

    THANK YOU for sending this desperately needed information to our doctors, this summary is an improvement on most of the information which is disseminated, which is notoriously inaccurate, outdated and incomplete. 

    Family physicians on the front line are essential to help Canadians be diagnosed and treated accurately and quickly, preventing serious disease, untold suffering and burden on our precious health care dollars.  As others have pointed out, there is still a way to go in educating the medical profession and the public on this issue. 

    Like others, I am very concerned however about the suggestion of a prophylactic dose of doxycycline.  As stated on the ILADS website: "It is impossible to state a meaningful success rate for the prevention of Lyme disease by a single 200 mg dose of doxycycline because the sole trial of that regimen utilized an inadequate observation period and unvalidated surrogate end point." - See more at: http://www.ilads.org/lyme/treatment-guideline.php#sthash.pmTOB4zU.dpuf. 

    In order to assist Canadian doctors in the clinical judgment, which, as you correctly pointed out, is necessary in cases of Lyme due to potentially inaccurate testing, it would be wonderful if doctors could be educated about the removal of the outdated IDSA guidelines from the National Guideline Clearinghouse (NGC), and the existence of a second, peer-reviewed guidelines which have been endorsed by the NGC and are now the ONLY Lyme guidelines meeting these criteria. 

    As well, it is equally important that doctors are informed of the existence and seriousness of coinfections transmitted by ticks along with Lyme Disease, such as Bartonella, Babesia, Ehrlichia, Q Fever, Tularemia, Rocky Mountain Spotted Fever, among others, which can be transmitted by OTHER species of ticks not just black-legged ones. Unfortunately, Public Health continues to suggest there is no concerns associated by other ticks like Dog Ticks or Brown Ticks.

    In addition, the transmission time MYTH continues to be quoted, although there is NO confirmed source for this.  In a study done in 2015, entitled "Lyme Borreliosis: a review of data on transmission time after tick attachment", the author concluded "A literature review has determined that in animal models, transmission can occur in <16 hours, and the minimum attachment time for transmission of infection has never been established." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278789/

    Continuing to perpetuate this erroneous information on transmission time will result in doctors continuing to turn patients away in the mistaken belief they could not be infected. In addition, how is a patient or doctor to know exactly how long a tick has been attached? A more prudent approach would be to caution and inform doctors that NO minimum transmission time has been established and that doctors and patients should be vigilant about detecting possible signs of infection.

    Doctors, as they have been trained to do, should be exercising clinical judgment in cooperation with their patients, and seeking to treat their patients to the best of their ability.  Thank you again, for raising awareness on this incredibly important issue. 

  12. Janet Laidlaw | Jul 15, 2016
    Please consider listening to these doctors who are at the forefront of treating and researching chronic Lyme disease. Their presentations give a much broader view of the disease and how we define it.

    Dr. Richard Horowitz - a presentation to the Belgium State regarding the World Wide Epidemic of Lyme Disease https://youtu.be/SXxWxMuUh8w 

    Psychiatrist Dr. Robert C. Bransfield on Chronic Lyme https://youtu.be/7BbEBb-SzIE

    Dr. Neil Spector - Renowned Oncologist Neil Spector, MD shares his own personal story on how Lyme disease led to an emergency heart transplant. https://youtu.be/Ja9iflckw-Y

    Dr. Steven E. Phillips, MD - Lyme Disease Patient Seminar https://youtu.be/_wkC5yjsdm0 

    Dr. Alan MacDonald  - Dr Alan MacDonald's recent work finding Nematode worms in Multiple sclerosis MS patients spinal fluid and also finding Borrelia ( Lyme Disease) in the worms. London Lecture May 15, 2016 https://youtu.be/7ZnY871HZhM

    These are some of the experts who are effectively helping Lyme patients to regain their lives.
  13. Cheryl A. | Jul 15, 2016

    Since it is known that undiagnosed Lyme is severely debilitating, even causing death, it would be prudent to err on the side of caution when diagnosing Lyme. Do not rely on the current testing methods recommended by the IDSA known to be unreliable according to Health Canada. http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php Instead, diagnose Lyme based on clinical presentations as is also recommended by Health Canada.

    Do not base diagnosis on attachment time of the tick. It has not been accurately proven that a tick must be attached for 36-48 hours, or any specific amount of time. Many have been infected with a tick attachment time of much less. Also consider that if a tick is removed incorrectly, the host could infected at the time of removal. Attachment time should not be used when considering possible infection.

    Also, the mention of a single dose of doxycycline given prophylactically would cause more harm than good. Undertreating with antibiotics is as bad or worse that overuse of antibiotics. Undertreating, meaning withdrawing the antibiotic before infection eradication, leaves the remaining bacteria with a prior exposure to abx and therefore a degree of resistance to it.

    Aside from the issues mentioned above, it is known that many family practitioners as well as specialists use the PHO Lyme map indicating high risk areas as a determination as to test for or even consider Lyme. This should stop. Many doctors state that if you live outside the highlighted areas they will not even test for Lyme. Since Health Inspectors openly admit that they do not have man power or funding to actually perform surveillance initiatives in all areas of their counties, referencing that map should be strongly discouraged. This map is not complete. http://www.publichealthontario.ca/en/eRepository/Lyme_disease_risk_areas_map.pdf

    While there is admittedly so much disagreement in the diagnosis and treatment of Lyme Disease, let us not forget that patients are still sick and deserving of respectful, courteous treatment and should never have their continuing illness dismissed. The Code of Ethics doctors must adhere to is very often none existent when Lyme is suspected.

    Knowing the pressures under which physicians are practising, diagnosing a patient with Lyme must be an almost unbearable task. An openness to continued education, as well having the doctors practice without their hands bound by outdated and no longer relevant protocols about Lyme Disease, will succeed in having the doctors not fear disciplinary actions for treating outside these antiquated guidelines that are no longer working, and the patients may actually be cured and go on to live productive lives. The IDSA quidelines currently recommended by Health Canada have been withdrawn on February 12th, 2016 in the United States by the National Guideline Clearinghouse (NGC) yet we in Canada still adhere to them. https://www.lymedisease.org/idsa-guidelines-removed-ngc/ Why would we still choose to follow them?

    Lots to think about. Lots to consider. Let's put patient health first, and simply diagnose and treat an illness that is increasingly common in Ontario and across Canada. Lyme patients want their lives back. Who wouldn't?

    Don't allow Lyme to destroy people's lives, and put an unnecessary stress on their families, the province and our country. While those suffering with Lyme in Ontario/Canada are not dead, they are certainly not living.

  14. Lyn Dainard | Jul 14, 2016

    You have some good advice to pass along but your information about how long it takes to become infected, the incidence of Lyme in Canada and antibiotic dosage really needs updating. It would be a service to all Canadians if the proper information was obtained from Canadian Lyme literate doctors/naturopaths, Lyme advocates and Lyme patients instead of using misinformation from US agencies like the CDC and IDSA. 

    I got Lyme disease in downtown Calgary in 1976; fever, chills, bullseye rash. My doctor said I had ringworm. Our vet said no but he didn't know what it was. 40 years later, most doctors still don't.

    I went through numerous tests and surgeries and finally suffered a complete systemic breakdown, multiple organ dysfunction, brain fog/concentration problems, pain, fatigue, GI distress and serious depression. I told many doctors about the bullseye rash and repeatedly asked for a Lyme test. They all refused.

    I finally found a doctor who agreed to send my blood work to the US for testing. I had chronic late stage Lyme disease. I could not get help in Canada. I still can't. The doctors won't even acknowledge that Lyme disease exists. If I want the consideration accorded to any other patient, I have to go to the US.

    Health Canada and the Colleges have a huge task ahead. They have to educate the doctors, the public, the patients and, first and foremost, themselves. Please do it soon. Lyme is at epidemic levels. In Canada.

  15. Katherine Johnston | Jul 14, 2016
     Dr. Nevena Zubcevik, attending physician at Harvard Medical School and co-director of Dean Centre has information that current tick-attachment timeframe info is not reliable. Some diseases can be transmitted within 15 minutes. Please contact her in regards to her info in this article:

    "The conception that the tick has to be attached for 48 hours to inject the bacteria is completely outdated,” she said. “There are studies that show that an attachment of 15 minutes can give you anaplasmosis, 10 minutes for the Powassan virus, and for the different strains of Borrelia burgdorferi, we have no idea.”

    http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/
  16. PJ HUGO | Jul 14, 2016
    This study from 2008 recognised and clearly states that our current day testing is only 37% accurate! That is not a passing grade for any test, let alone one that will determine the future health of each and every Canadian tested!! Please see http://cid.oxfordjournals.org/content/47/7/910.full

    Telling our physicians that the risk of tick infections is low is criminal! Thousands upon thousands of Canadians currently suffering with one or more tick borne infections will most likely have their concerns dismissed or be misdiagnosed with one syndrome or another that our physicians so blindly gravitate to.

    Treatment of tick borne illnesses should be swift and adequate (not one to three pills) to prevent a life long struggle with these illnesses.

    I beg of every provincial board to properly educate our physicians in the diagnoses and reliable treatment of suspected tick borne illnesses (as there are potentially multiple different infections acquired through the bite of just one tick).

    Treat the bite... don't wait until these horrible infections take hold of your patients body, as these infections are near impossible to eradicate! 
  17. Jill Kerney | Jul 14, 2016
    My understanding after researching quite a bit is that the Elisa test given in Canada is ,at least 60 % of the time negative or more . There should be new testing standards set in Canada theses are so outdated. The western.blot is only done if Elisa is positive which is rare  it is not a good test and is often wrong. Dr.s definitely need to listen to their patients and their signs and symptoms and their diagnosis should be made on these as well . So much money has been wasted sending these patients for numerous cat scans specialist appts. Ect who don't come up with anything but chronic fatigue and fibromyalgia because they can't put a name to it. Yes Lyme patients will have all these symtoms but more . Canada lets get with it there are many people suffering needlessly out there and need treatment .I guess the old laws will be alright until one of their family suffers from this debilitating disease then they will fight for answers.listen to  the people suffering loss of jobs homes and financial stability trying to get answers for this debilitating disease. 
  18. Jane Bailey | Jul 14, 2016

    Dear Dr Sarah-Lynn Newberry

    Thank you for trying to bring more awareness and education regarding Lyme Disease to the doctors of Ontario - it is appreciated.  However, the continued insistence on the use of outdated information (such as that perpetuated by the CDC) is causing untold pain, suffering, and harm.  For example - the CDC continually state (as does Health Canada, who, I presume, are using CDC (mis)information) that a tick has to be attached for at least 36-48 hours before it can transmit infection with Borrelia; a simple check of the scientific and medical literature will show this statement to be inaccurate as there is nowhere in the literature that substantiates this figure - the 36-48 hours is completely arbitrary.  In fact, there is peer-reviewed literature that states that Borrelia can be transmitted in as little as 20 minutes of a tick bite, particularly if that tick had previously began it's feeding activities on another host.  

    A single prophylactic dose of 200 mg doxycycline is rubbish!  How did the CDC come up with that "fact" - it, also, is completely unsubstantiated in any other medical/science literature written by reputable peer-reviewed authors.  A statement like that is not only misleading, it is dangerous.  I could go on regarding other statements of misinformation from the CDC, but, instead, draw your attention to the below.

    Below, you will find a letter published on 12 July 2016 in the Canadian Medical Association Journal - July 2016 edition - that clearly outlines the facts regarding the removal of the CDC endorsed IDSA Lyme Disease Guidelines.  This letter was peer-reviewed by the CMAJ editorial review board prior to publication.  I do believe the last paragraph was edited out due to space restrictions.

    Please feel free to contact me should you have any questions or require more information - I would be only too happy to discuss these with you.

    Once again, thank you for your efforts regarding the education and awareness of Lyme Disease for/of the doctors of Ontario - I only seek to ensure that they have the best available information.

    Sincerely

    Jane Bailey

    Nova Scotia

    Update on Lyme Disease Guidelines Availability:

    Most doctors in Canada are aware of the National Guideline Clearinghouse (NGC), a federal agency of the United States Department of Health and Human Services responsible for providing the most up-to-date clinical guidelines to physicians.   The NGC also removes those clinical guidelines that are no longer relevant, do not meet the requirements and standards of the Institute of Medicine Grading of Recommendations Assessment, Development and Evaluation (GRADE) requirements, and/or have not been revised in the last five years.  

    In January of this year, the NGC removed the Infectious Diseases Society of America (IDSA) Lyme Disease Guidelines (1).  These guidelines were removed for the reasons stated in the previous paragraph (1). In a scathing report on the standard of clinical guidelines in North America, the IOM specifically referenced the IDSA Lyme Disease guidelines as a prime example of what not to do (2).   Now, the only evidence-based, peer reviewed, conforming to (and exceeding) IOM clinical guideline standards, Lyme disease guidelines now available on the NGC web portal for Lyme Disease, is the International Lyme and Associated Diseases Society (ILADS) Lyme Disease Guidelines (3).      

    It is assumed, that our intelligent, highly trained, and critically-thinking doctors have the autonomy to make their own clinical decisions based on facts, their clinical knowledge and expertise, and in collaboration with their patients.  Anything less would be an affront to our doctors, and to our patients.  

    References:

    1.   http://www.lymediseaseassociation.org/index.php/lda-news-a-updates/1456-official-word-on-idsa-guidelines-removal-from-ngc  and  https://www.guideline.gov/browse/archive.aspx?type=2  (see #17)

    2.   IOM (Institute of Medicine). 2011. Clinical Practice Guidelines We Can Trust. Washington, DC: The National Academies Press.

    3.  Cameron, D. J., Johnson, L. B., Maloney, E. L,. 2014. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014 Sep;12(9):1103-35. https://www.guideline.gov/content.aspx?id=49320

  19. Leslie | Jul 14, 2016

    The incidence is not as "LOW" as you profess, because our testing methods (Elisa) is not worth the paper it is written on.  Many get a false negative.  We need better testing.

  20. Leslie | Jul 14, 2016
    The wait and see approach could make many people chronic.  A single dose of Doxycycline will do NOTHING!  The idea that the tick should be attached for at LEAST 36 hours gives to a false sense of security.  The risk maps also do the same as it can be found anywhere that birds fly.  It can also be found in many other smaller rodents.  Please share proper information so people do NOT end up Chronic like me.  It's no life. it's existing.  Existing without proper care or treatment.

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