Download SURVEILLANCE Human Surveillance: II. Veterinary and Associations:

 June 7, 2017 SURVEILLANCE I.
Human Surveillance: a) confirmed tick bite and a bulls‐eye rash is currently NOT considered to be a confirmed case of Lyme disease. In one week, we had 4 individuals contact us with bulls‐eye rashes – none will be considered cases of Lyme in Canada. There are states in the US that made it law that these cases are reported – can we implement something here? ** QUESTION: Why are these cases not being considered? Our numbers of those infected with Lyme should be considerably higher than what is being reported. These are clear cases of a clinical diagnosis of Lyme disease and there is little room for error. The public feels they are not at risk because of the numbers of confirmed cases that are being reported from government. II.
Veterinary and Associations: a) Will surveillance maps correlate across borders? b) Vets are already reporting other tick‐borne illnesses. Will these be considered as valuable information for testing in humans? c) Dogsandticks.com ‐ a website showing reported tick‐borne illness in canines. Saskatchewan is empty. Can it be mandated that all provinces are required to use the same testing and reporting methods so it is consistent? The rates of infected animals does not correlate with the number of humans infected. These are responsible dog owners – they will be in the same risk areas as their pets. How is the human incident rate so much lower? PREVENTION I.
Prevention a) prophylaxis for tick bites Study from John Scott in Lake of the woods ‐ report shows 73% of the ticks carry the lyme bacteria. If someone is to be bit by a tick in that area, they are not able to get antibiotics by the current protocol. Unless symptoms occur, (which can take days, weeks or months) they will not get treatment. If they are bit by 2 or more ticks, what is the likelihood they will get Lyme or another tick‐borne illness? It is safe to say that they are most likely infected with Lyme. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5118759/ Other provincial reports show the tick infection rates in Canada are already higher than 20%, some areas as high as 53% https://www.gov.mb.ca/health/publichealth/cdc/tickborne/docs/tbd_report2015.pdf ** QUESTION: Why can’t they get treatment – early treatment is essential and gives the best possible outcomes. As the tick population grows and establishes itself, this will be a growing trend across the country. We cannot wait another 5 years to address this issue!! We had an individual tell us they were hiking and ended up with around 10 deer ticks attached. Their likelihood of having a tick‐borne illness is very high, and it is likely that they would need more than the 3 weeks of antibiotics. This is another clear case of someone falling through the cracks. DIAGNOSTICS I.
Those already ill a)
The Framework has not addressed those that are currently living with tick borne illness in Canada. b) Many are unable to work and are refused disability because Lyme disease is not recognized as a debilitating illness even though it causes symptoms that mimic MS, ALS, Alzheimer’s, fibromyalgia which are all considered causes of disability. c)
Most are unable to get a positive lab result from Canadian Labs, are refused testing, or refused appointments to be assessed by infectious disease specialists even though Lyme disease is a clinical diagnosis. ** QUESTION: Can lab tests from non‐Canadian labs be considered for assessment or treatment for those already living with Lyme? Will these results allow the patient to be seen by an infectious disease doctor? Currently many are refused to be seen based on the tests being done out of province. If a patient had an MRI done out of the country that detected cancer, they would not be refused treatment or assessment because it was done elsewhere. If patients go to another lab, they should still have access to specialists here to find the source of an illness instead. What options do they have for treatment in Canada and what is being done to ensure those that develop disabilities because of undiagnosed Lyme receive benefits they are entitled to? II.
Multiple Strains of Borrelia a)
There are multiple borrelia species and strains carried by ticks and it is poorly understood which are pathogenic to humans but it is well understood that many species beyond borrelia Burgdorferi cause human illness. b) Lyme disease needs to stop being described as being caused by borrelia Burgdorferi and rather as a disease caused by borrelia and be referred to as Lyme Borreliosis and Lyme Neuroborreliosis. c)
Current testing does not address the issue of multiple species of borrelia bacteria. i. Many test positive for other strains which not tested for Canada, without a travel history. ii. Migratory birds bring in ticks and pathogens not native to Canada and we need to be prepared for this to increase with continued climate change. iii. Improvements to testing need to focus on better sensitivity for all borrelia bacteria so it can be determined which borrelia species are truly causing human illness. ** QUESTION: Until better testing can be developed we need to be aware that some patients will not test positive but will still be ill with a variant of borreliosis and hence the need for improved physician awareness about the testing and complexities of a borreliosis illness. How does the Framework address this? What education will be provided to doctors and the general public on this? EDUCATION & AWARENESS I.
What is Lyme Disease? a. The public does not understand the seriousness of the disease until it is too late. b. Symptoms are “advertised” as flu‐like. People are not told how debilitating it is when left undiagnosed and untreated. There is no urgency to seek immediate treatment for most people. II.
What do people do when they are bit? a. What should they do? How do they identify the tick? When do they seek medical treatment? What is the proper protocol? These are all questions we are asked frequently on our Manitoba Lyme & Tick‐borne illness Facebook page. This information is hard to find and very confusing for someone that does not have lyme. b. People need to know what to do if they are bit – at what point should they go to the doctor. When they go to the doctor, what is a proper guideline for treatment? There is so much information that is out of date or not adequate to treat lyme disease. Many of these were discussed at the Lyme conference, the current Framework is not being specific enough on how this will be addressed. While there is much debate on what the proper treatments are, part of the solution is to stop the treatments that should not be happening. ** QUESTION: Are these acceptable treatments for acute Lyme disease? How do we stop this from happening, sooner rather than later? III.
i. Prescription creams for the bite or rash. ii. One dose of doxycycline, or 3 days of doxycycline? iii. Being denied treatment because the tick was not attached long enough, or the tick was not identified as a blacklegged tick iv. Presenting with a bulls‐eye rash but denied treatment because there were no other symptoms? v. Denied testing because the symptoms were not during “tick season” (ie. December, January, February) vi. Offered a blood test when bulls‐eye rash appeared (which is too early), and then being denied treatment because the test was negative. Tick Identification: a. Tick identification needs to be readily available and relevant to the area they live in. b. People also need to know that any tick bite needs to be taken seriously. Our climate continues to change and there are new species of ticks carrying different bacteria. We need to be proactive, and have it become part of our culture that all tick bites are serious. The idea of dismissing a tick bite because it isn’t the right type of tick is not sending the right message to the public and putting them more at risk. The lone‐star tick has been surfacing in Minnesota and it will be a matter of time before it is in Canada as well. IV.
Tick Removal: a. There is so much conflicting information people do not know which is correct. b. Proper removal methods need to be clearly documented – and in addition people need to know why other methods are not recommended. Improper tick removal can increase their risk of infection, this is a very important message that needs to be sent to the public and doctors. c. Tick Attachment ‐ Doctors need to be aware that the length of time a tick is attached is irrelevant if the tick has been removed improperly. The time it takes for a tick to transmit an infection varies depending on the tick‐borne illness – anaplasmosis suggests 24 hours or less, so attachment time should not be published in a way that an individual feels they are not at risk of infection because of this. https://www.gov.mb.ca/health/publichealth/cdc/docs/hcp/2017/040717.pdf V.
Tick season: This should not have dates to focus on. Awareness is more effective at certain times, however in educating the public and medical professionals “tick season” should not be labeled. Climates are changing and ticks are out earlier and later every year. People are being denied access to lyme testing due to symptoms appearing over winter months. We have surveyed in Manitoba and found ticks from March to the end of November. Symptoms can take several weeks to present, so Lyme should be on the radar year‐round. SOME FACEBOOK EXPERIENCES (from the public Page “Manitoba Lyme & Tick‐borne illnesses) 
A golfer was bit by a tick and a classic bulls‐eye rash appeared. His daughter‐in‐law saw the rash after a week of it being there, and begged him to seek treatment. Reluctantly he went to the doctor. 
An individual contacted us on Saturday with a confirmed tick‐bite and rash and inquired on whether or not they should seek treatment. We advised they should, provided provincial guidelines for treatments, and the person decided to wait until Monday to make an appointment with her doctor. 
An individual pulled off a tick and a rash developed. Although they threw the tick away, they thought it wasn’t blacklegged and since the rash was going away they felt it wasn’t necessary to seek treatment. 
A child was bit by a tick and had many flu‐like symptoms. He was prescribed amoxicillin. Three weeks into treatment and he is unable to attend school and symptoms are worsening. Amoxicillin is not working and treatment needs to be changed and he should be considered a candidate for testing for other tick‐borne illnesses. It was his aunt that contacted us as the mother had no idea the seriousness of what was happening. It is very difficult to see the obvious cases falling through the cracks in the system. We are only seeing a small fraction of the problem we know is there. Our group tries to remain neutral to the public in the lyme debate, we want to help guide people to get the treatment they need. It is difficult to convince a person that they need to be their own advocate and push for treatment, and not trust their doctors and their protocols when it comes to Lyme disease? We have all grown up trusting police officers and doctors – how do you tell someone that they need to trust our advice over a medical professional? SUGGESTION: We want patients and select advocate groups need to be involved in the process. We are an extra set of eyes and are able to see things that are happening in many different aspects. We have a different capacity to reach people and send the messages to the public ‐ together and united we can work towards a common goal much faster. ** QUESTION: Why doesn’t the Framework specify who will be involved, how often and in what capacity? We were already told we would be a part of this Framework but haven’t been consulted and shut out of the discussions. We would like this to be more specific and clear. TREATMENT I.
Treatment Protocols a. For those with a positive lab result, treatment is at most 3 weeks of doxycycline – whether or not symptoms persist. There is no consideration as to the current stage of infection, where IV antibiotics should be an option. b. The Infectious Disease Society of America (IDSA) guidelines endorsed by the framework are very restrictive in there criteria as to what is considered Lyme disease and very restrictive in how it is treated and do not take into consideration how the patient wants to be treated. c. The IDSA guidelines have also been removed from the National Guidelines Clearinghouse a database where insurance companies and doctors reference for treatment guidelines in the United States of America because they were outdated and not in compliance with current standards. d. Treatment guidelines from a specific source should not be endorsed by the framework as this puts a restriction on treatment options and may restrict new research discoveries and newly developed treatment options. e. Treatment options should be provided to a patient and the patient should have the pros and cons or the risks and potential treatment outcomes of each treatment option carefully and fairly explained to them and they should have the right to choose how they are treated, as they would with other illnesses such as cancer. ** QUESTION: Why are patients given a “one size fits all” treatment plan? All patients have different symptoms and possible different infections (considering things such as babesia, anaplasmosis, rickettsia, etc) WHO WE ARE Manitoba Lyme & Tick‐borne illnesses is an advocacy and awareness group from Manitoba. Our group was formed in September 2015. We host monthly support group meetings for individuals with lyme, families and friends. We also educate the public in tick‐borne illnesses – what is lyme disease, how to prevent it, how to properly remove ticks, how to identify ticks, how to get proper treatment. We have presented to different organizations on tick‐borne illnesses at their company safety meetings. To date, we have presented to approximately 1,000 people. Our group has a public Facebook page – “Manitoba Lyme & Tick‐borne illnesses” which was launched in the fall of 2016. Some of our posts have reached over 500,000 people and been shared over 11,500 times. Most of our followers are healthy Canadians who want to learn more or be aware of Lyme disease. This has been an excellent tool in education and prevention. Five of our six organizers attended the conference in Ottawa, and the 6th member watched online. Our group members are: Heather Allan – niece has Lyme (sister to Marnie Le Page) Jan Cmela – adventure racer ‐ diagnosed with Lyme disease in 2013, suspect it was congenital with symptoms surfacing after a hard fall. Her son has recently been diagnosed with Lyme disease as well. Marnie Le Page – teenager daughter has Lyme. Contracted in 2014, Diagnosed in 2015, missed her grade 7 and 8 school year. After spending several thousand dollars in treatments and using ILADS guidelines, she is in remission and attending school in grade 9. Janet Lewis Anderson – contracted lyme in 2002, diagnosed in 2013 Ryus St Pierre – geologist – contracted Lyme in 2009, diagnosed in 2014. Currently unable to work and has been denied disability. Brian Watson‐Colter – bullseye rash in 2009, denied treatment. Diagnosed with Lyme in 2010. None of us have tested positive in Canada for Lyme disease or other tick‐borne illnesses, and all have had to pay for diagnostics and treatments. This bill was put forward in 2012. During that time, we have all acquired this illness? How many more will be affected in the next 5 years? We recently launched a survey which is still in progress to get statistical data on those infected with Lyme disease. We are still acquiring data, but current trends show: 
Approximately 35% percent recall a tick bite 
Approximately 60% have seen 4 or more doctors regarding their symptoms 
Approximately 50% have seen 4 or more specialists 
Approximately 72% have been experiencing symptoms for over 3 years 
Approximately less than 10% are being diagnosed through Canadian Lab results Manitoba Lyme & Tick‐borne illnesses contact: Marnie Le Page – 204‐794‐5339 [email protected]