2016 Lyme disease conference breakout session 2: Guidelines and best practices, next steps

Conference to develop a federal framework on Lyme disease

May 15-17, 2016, Government of Canada Conference Centre, 111 Sussex Drive, Ottawa, ON

Conference day 3: Tuesday May 17, 2016 , Algonquin room

Audio Recording


Lise: [33:46]

All right. Hello everyone, hello again. If I could have your attention, please. If I could have your attention, please. Dan said, this morning, this is where the hard work starts, and I would tend to agree with him. In presenting the key messages of the day yesterday, and I would apologize [inaudible] of our Francophone participants, for not having used French at all, [inaudible] this morning, it will improve. I noted that we had different groups with different interests. So, now, the challenge that I'm throwing at you is to have conversations across those group barriers, to try to create a vision where all the needs are met. So, I would ask for a show of hands from those in the room, those of you who are not patients or patient advocates. I just want to get a sense of how many. I'm assuming you're a minority. Okay. What I would ask is that you distribute yourselves so that as many groups as possible have one of you there in the conversation with them. So, if there are two or three of you at the same table, for example, if you can find your way out elsewhere into the room, and those of you who don't have one of these people close to you, please welcome them into your circle. We have a certain number of tables; people can get up and join a table. Or you can just circle your chairs around to have this first conversation. But we're going to do small group first, and then come back into plenary. For those of you on WebEx, that will be a challenge. I don't know how many of you are out there and I don't know if any of you are joining as groups, so unfortunately, it might simply be that you will have a period of silence where you can think this through individually as opposed to doing it in groups, but if you have a way to have a group conversation I would invite you to do that. I'll check in with our technician as soon as we get started in the room, here, to see if there's anything we can do that way.

So, your first question is to envision a better future. Don't worry about the timeline for that, but I'm asking you to imagine a future where the issues have been addressed, and the guidelines and sharing of best practices specifically, because that's our focus here in this room, and the others are doing visions around education and awareness and surveillance, but a future where guidelines and sharing of best practices are working for everyone, okay? What does that look like? Project yourself into that future and imagine what you would see. And then have somebody in your group take notes for the group of that vision. And what we'll do when we come back into plenary is I'll ask a few groups from different places in the room to share their vision, and then I'll ask the other groups to add any elements that they might not have heard, or that they want to emphasize. So, I won't go to absolutely every group to have you recite your vision because we could be here for three days instead of a morning, okay? Is the task clear? Are there any questions on what I'm asking you to do, here? Okay, I'm going to suggest 15 minutes to start, and then I'll check in and see if you've had a chance to do something that you're comfortable and happy with, and if you need more time then I'll give you more time at that point. But for 15 minutes in small groups, try to get as much of a mix of views as you can in your groups. Really talk about what would be success from all of your perspectives. What's your vision of success? Good discussion, we will meet again in 15 minutes, then we'll have a joint discussion about the visions that you have developed together.

Lise: [58:22]

If I could have your attention for just a minute, please. I promised I'd do a time check. I'm not trying to rush you; I just need to get a sense in the room of how many of you are still working on your vision and how many have kind of moved into other conversations. So, how many are ready to share your vision? Okay. So, a few are, and the others are still working on it. So, another ten minutes, is that too long? Ten minutes? Okay, so at ten after ten, we will come back, and I will look for your statements of vision. For those of you who are already done, what's the saying? Talk amongst yourselves. Good discussion. We'll come back in 10 minutes.

Lise: [1:07:50]

This is your one-minute warning, we resume in one minute. One minute.

Lise: [1:08:54]

So, I would invite you back to plenary, and there's been a suggestion that, for this piece at least, for the vision piece, instead of moving the microphones to the few tables who will be asked to just state their entire vision, that you come to the front and speak from the podium. So, if there is a group representative who'd be willing to come to the front to state your group's vision? I've got two hands up right away, so I'll start with you, and then I'll come over to the left here. So, okay, and oh my goodness, all of the groups want to do it, okay. Let's…

Heather: [1:09:39]

(Inaudible) two because I think we got it all right here, everyone. We'll just have to elaborate this in no particular order.

Lise: Okay, hang on just a minute. I just want to make sure you have everybody's attention. And don't forget, we'll also be going to folks on WebEx so I might not get to everybody, but let's see how we can do this. Go ahead, please.

Heather: Okay, and I apologize, because we jumped around a little bit once we started talking a little bit more, so I-it does have a pattern in my brain. So, we wanted to have defined and reviewed a guideline that is done by the medical profession. So, it's got to include health care providers, naturopaths, and everyone involved in the entire body. We need consistent updates, that is mandatory for all medical professions, to make sure that they're all on top of what's going on, at least yearly. Oh, I just know we're on a time constraint. Move closer than that? Okay, how's that? I can. So, we want defined and reviewed guidelines yearly by the medical profession. That includes health care providers, naturopaths, anyone that's involved in any part of the body that actually contributes to what happens to people with Lyme. Consistent updates, that is mandatory for all medical professions, at least yearly, with special updates and bulletins always issued so that everybody is in the know at all given times.

Students need, in the medical profession and other-and that includes, again, naturopaths and everything needed, on what Lyme is and trained right at the university level. We need more immediate diagnosis, and we're suggesting that we have a test that detects early, and it's like a pregnancy-type test, either you have it or you don't. Prevention on the longer term, we want immunization to look at reducing the primary pool; remove the pathogen, and the vectors. We want best practices created for all health care professionals that, again, are reviewed annually. We want to be equal partners with health care practitioners so it's just not a one-man cowboy with one opinion that stands against all. A central reporting system to keep track of what is working for patients and what is not, that is accessible by everybody. So, it needs to have a multiple discipline approach, not just infectious disease. It's got to include cardiologists, environmentalists, it's a multi-systemic disease, so we need functional and integrated doctors, nutritionists, anyone that understands the pattern and may have an impact on the treatment. Not just the antibiotic results, it's everything.

We want doctors to be able to be more open minded about thinking outside the box and have the ability to do that without fear. We need to remove the fear. We need multicentre trials, multinational and national, so that we can put all of our knowledge together, and start moving forward as a group. And we need to also look into research of what's keeping people healthy, and why some get it and why others don't. There might be more in the body that we have at our disposal that we're not using. We want a review of all the years of misdiagnosis so we can catch up with the people that have been left behind. So, we want a national program with multi disciplines involved, continual review of guidelines, and just keep moving the game forward. And I hope I did us well.

Lise: And so, I'm sensing a blend of vision for the future and how we get there, but we'll start with vision for the future. Yes. So, the point made, and I was going to make it as well, yes, we don't have tons of time, but please speak at a slower pace, so the note takers can capture it, the translators can translate it, and we can all understand it, because it's really powerful stuff, okay? So, I'm hoping we got all of that. You have it right there, and we have the recording, so thank you. Another person from the room, go ahead.

Karen: [1:13:23]

Okay, we have a dream. Our dream is that Canada will be a world leader in Lyme disease research, treatment, and diagnosis. We have a dream that the Magnotta foundation, its work will be done, it's clinic will be there, its diagnostic facilities will be there, its research labs will be there, its clinics, its testing, its treatment of Lyme disease will be there, and there will be other centres across Canada that will duplicate that work. We have a dream that, together with patients, that these foundations can be overseen by boards of individuals who are interested in the care and treatment of patients. One of the ideas was that perhaps rehab medicine would be the best people to oversee these, because they are working on getting people better.

We believe that doctors should be protected, now, for treating patients, and that we should not stick to the strict guidelines that the IDSA has put forward for treatment. We need a test. We believe that, in our world, we will have a test that is reliable-sorry, a test of active infection and co-infections that is reliable now. We believe, now, an immediate win would be education of physicians and any health care practitioners around Lyme disease, and a patient-oriented care, that we stop thinking about anything other than the patients. I'm just going to look here, quickly.

Our goal is to get people together. This actual activity at our own table broke down huge silos for us, and was a big step in going the right direction, so thank you for that opportunity. We need to remove limiting barriers. We need to have all types of professionals at the tables, holistic approach would be best, and we absolutely need balanced relationships between doctors and patients.

Lise: Thank you. I'll do one more from the room, then I'll check WebEx, and then-oh, so, have we-you had your hand up first, but people jumped up, so yes, I'm sorry, can I ask you to step back and give her a chance, first? Because she did-you were the first to catch my eye, okay. You have your speaker, oh wow, a special microphone.

Harry: [1:15:49]

So, we had some comments about what we envisioned, our ideal guidelines, and then a few other quick comments about what we think is needed in the context of the guidelines to be best implemented. So, we recognize that there's both the acute presentations of Lyme disease, but also some more chronic presentations that have been less well-accepted and recognized historically, and we need guidelines that accept and recognize both of them, and start to break down the stigma, particularly for the more chronic presentations.

We need these guidelines to take a holistic approach in taking into account all the different modalities of treatment that are available, to make sure that patients who maybe aren't being, you know, getting the care, the relief they need along one guide can get it from some of those other disciplines.

We need the guidelines to no longer have the conflict where we have the IDSA guidelines and the ILADS guidelines conflicting, and somehow integrate the best of both so that there's the best treatment for everybody within these final guidelines. We need the guidelines to recognize there is risk of Lyme disease everywhere. While there's endemic areas where the risk is highest, ticks can be found anywhere carrying the Borrelia bacteria, so the guidelines need to recognize that.

The guidelines need to continue to emphasize that treatment must be based clinically, and shouldn't be reliant on the lab test. Even if the lab test is 95 percent accurate, that still means that it's going to miss five percent of people, so we need to make sure that the clinical picture is not lost in that. And we need to make sure that whatever guidelines are come up with that they are promoted-that it's educated across the health care system so everybody is fully aware of what the recommendations are, because right now a lot of people aren't being treated appropriately because they're seeing a clinician who is not fully aware of what the current guidelines are.

And then secondarily, we thought there's a couple of contextual pieces we need so the guidelines can be appropriately used, and that is we need to have rights for physicians to treat according to their best clinical judgement with protection that they're not going to be persecuted because of this, but similarly, we need rights for patients to go seek out the treatments they may need and not be barred from access to health care within Canada because they're seeking health care from elsewhere. And also, to have some avenue for patients to potentially be reimbursed for the care that they seek elsewhere.

Lise: Okay, so I've been asked that to ask people to say who you are as you come up to speak, so we don't have the names of all of the people who did speak already. Maybe we could do that if you don't mind. We'll bring you a microphone, or you can come to the front. Yes, okay.

Heather: Hi, I'm Heather Allan. I'm from Winnipeg, Manitoba.

Lise: Thank you, Heather.

Karen: Hi, I'm Karen Meyer. I'm from Toronto, Ontario.

Harry: And I'm Mr. Harry (inaudible) from Niagara region, though I'm not sure if I should really be saying my name because it's our table that came up with our recommendations as a group, and everybody here should be recognized.

Lise: Absolutely, thank you. Yes, it should be understood that these people are speaking on behalf of a group. We won't do the full round of names. Because I interrupted you, I'll invite you to come first before I go to WebEx, and then I'm going to see if there's anybody on the WebEx call who has something to add. Go ahead.

Melanie: [1:19:16]

Good morning, everyone, it's a pleasure to be here. I'm Dr. Melanie Wills from the University of Guelph, and I'm very proud to say that our table achieved, I think, the perfect representation that you were asking for. We had research science, we had patients, we had patient advocates, and public health. And so, what does our vision of the future look like? I have a bunch of bullet points, and I know that they overlap with what's already been said, but that doesn't make them any less valid. Patients are partners in care. They are treated with respect and compassion. Patients need to be considered experts in their own personal symptoms. We need multidisciplinary integrated care. We need confidence in our medical system. We need prompt and adequate intervention in the acute phase before chronicity sets in. We need authentic acknowledgement of long-term chronic trauma that patients have suffered in attempting to access help. We need medical supports and psychological supports for patients in these positions. We need dedicated treatment centres with a team of multidisciplinary health care providers who are knowledgeable on the topic and offer appropriate intervention. Patient input on the composition of these treatment centres is required. We also demand engagement of the social sciences as well, to bolster outcomes of biomedical research, as they tend to be well positioned at doing qualitative research and engaging patients. Thank you.

Lise: So, going to WebEx now, is there anybody who has the time and the context where you could come up with a vision statement?

Operator: The first comment is from William Baker. Please, go ahead.

William: [1:21:19]

Hello, yes, good morning, can you hear me?

Lise: Yes, go ahead.

William: Oh, wonderful, thank you. The vision that we have for moving forward, as the kind gentleman that just spoke earlier-with the glasses and the Jose Bautista style beard, I believe he is from the Niagara region-he spoke about being persecuted, and that seems to be the problem with our poor doctors throughout Canada, by the College of Physicians and Surgeons. So, moving forward, immediate help, medical help, for those who are infected, suffering, and dying, including children. This would look like lifting all sanctions on doctors by the College of Physicians and Surgeons on doctors who diagnose and treat Lyme patients.

Currently, doctors are not permitted by the College to use clinical diagnosis for Lyme. They are severely reprimanded and threatened with loss of their licence. Treatment is restricted to IDSA guidelines only, and they should be allowed to use their educated judgement with the ILADS guidelines, and they should be permitted to do so. Doctors need to be directed and allowed to treat patients according to their knowledge and history of patients' illnesses and suffering. There are now no doctors in Toronto, Ontario, or Canada, that I am aware of, that treat Lyme disease, out of fear of persecution from the College of Physicians and Surgeons. Patients are therefore having to flee to the United States, at great expense and suffering by Lyme patients, to seek treatment. We cannot afford treatments by U.S. doctors, and most patients are far too sick to make the long journey for the treatment.

In summary, doctors must be released from the strong arm of the College so they can practice as they see fit. This is of immediate importance. Time of treatment is of essence, particularly to those that are dying and sick. Public communique to all physicians and public, notifying doctors that they may treat Lyme patients by IDSA or ILADs treatments. The reporting of Lyme disease to the public health agency is severely restricted due to the fact that doctors cannot or will not treat Lyme or diagnose Lyme, therefore they don't report to the public health agencies.

Lise: Okay, thank you very much.

William: That's it, thank you.

Lise: Okay, thank you. Now, as you can hear, with the last two speakers, we're starting to get things, messages that are coming across that are a bit repetitive, so I will look to you who have asked to speak to try and simply add new or brief emphasis on something if you've seen that it's already been said. Next speaker please. Don't forget to say your name.

Moragh: [1:24:15]

Hi everybody, I'm Moragh Lippert. I'm from Guelph, and I'm a holistic nutritionist, and I do not have Lyme, but I look after a lot of clients who have Lyme, so this has been very helpful. These are the thoughts from our group. They're a little here and there, but I think that we've brought them together in somewhat a vision, what was important to us. We talked a lot about evidence-based guidelines based on research questions that need to be very specific, and guidelines built on best evidence and full transparency.

We talked about data; it should be objective plus subjective, qualitative and quantitative, all need to be included. We discussed test results and how patients need to have access to test results with the full information, not just summaries, and they shouldn't have to file certain paperwork to get them. Test results should not override a clinical diagnosis. We talked a lot about transparency and inclusion of not only this process, but going forward, in order to build trust, because there's been a lot of broken trust that we've heard over the weekend. So, building of the framework itself needs to be a transparent process on an ongoing basis, plus implementation of the guidelines.

And lastly we felt that there was a lack of representation at this conference in terms of medical professionals and experts that were not medical doctors. Thank you to the medical doctors who spoke, but there are a lot of other health care practitioners that are having success with Lyme patients, who did not have an opportunity to speak, and we think that's a huge gap. Like other groups, we would like to encompass a broad range of functional medicine, and integrative medicine caregivers including, you know, naturopaths and acupuncturists, functional medicine doctors, physiotherapists, registered holistic nutritionists, because diet is important and we haven't really talked much about that, that's my thing, sorry, and osteopaths. So, that's our group vision and we look forward to seeing the outcome. Thank you.

Lise: Thank you. Before I go to someone else in the room, I'll check again with the WebEx operator. Do we have someone else cued up for stating their vision? Remember, we're looking to the future, and we're trying to add new here, rather than repeat things that have already been said. Go ahead.

Operator: Yes, the following question or comment is from Echo Armstrong. Please go ahead.

Echo: [1:26:58]

Hi, So, what I was thinking would be a great add-on, and maybe something that could be implemented quite quickly, was a patient advocate/patient liaison that works within the medical community. I know that there isn't a lot of agencies like CanLyme or (inaudible) here in Alberta, and we have the Alberta Lyme Association which are wonderful and great advocates, but something within the medical community that's more acknowledged by them, I think it-there's almost a brush-off that's happened so far, and with that patient advocate they could help people that are currently ill, like myself, who don't have the energy or the resources to self-advocate. To this point, when I've gone in, I'm so traumatized by the medical community I can't even go by myself anymore, I have to take my husband because I'm so scared of what has happened, because I've been told off by doctors about how what I don't have is real. So the advocate would be responsible for-or an advocacy office, so probably not one person that could come, maybe, to the visits, or have volunteers that could come with you to the visits. They could liaison with doctors that maybe don't quite get it or are having a hard time making a transition into the new information. They could advocate for us to be incorporated into research. Now whether that's your own personal experience or just getting out to us that there is research and they're calling for participants, they could help us with recourse if there is an unprofessional person out there that has traumatized us, and they could maybe just help in terms of giving us the skills to walk into those doctors' offices with confidence, because I know, myself, after eight years, I'm frightened to go to the doctor now. I'm scared, and I feel like they need some advocacy within the medical community that the medical community itself acknowledges, you know…

Lise: All right, so…

Echo: …right now, we're outside of that.

Lise: Okay. So, patient liaison and advocacy within the medical community is the vision you're sharing.

Echo: Yeah.

Lise: Thank you very much.

Ben: [1:29:31]

Hi, I'm Dr. Ben Boucher from Nova Scotia, and I, unfortunately, am one of those Lyme-literate doctors forced into early retirement. Our group's vision is a timely diagnosis and treatment protocol to eradicate infection, ILADS-type training for infectious disease, family doctors, and potential Lyme-literate doctors. Allow ID and non-ID doctors to treat according to their knowledge and patient needs. Remove dependency on test results and treat clinically until reliable tests are available. Recognize that there are other vector-borne infections than Lyme, and from more than ticks. Recognize that infected ticks are also in non-endemic areas and not necessarily seasonal. Create centres specialized in vector-borne infections. Diversify guidelines to incorporate a variety of possible vector-borne infections. Create positions of national and provincial patient advocates. The status quo is unacceptable. We need change now and we need to treat patients with respect and fairness.

Lise: Thank you. And I'm also noticing that, you know, we put artificial boundaries around this process and I'm now asking you for vision, and there are all kinds of recommendations of what you can do to achieve those visions that are coming through as well, so those are being captured. We may want to repeat them when we go to the second part of the morning as well. Try for now to focus on what does the picture look like in the future, because we are going to come back to say, "How do we get there?" just briefly. Now, I don't know which of you was up next. Go ahead, okay, so I'll alternate left and right, and you can balance the lines out, and I will go back to WebEx one more time, and then we'll continue. Go ahead.

Kristina: [1:31:41]

Great, thank you. My name's Kristina Molloy, and I'm from here in Ottawa. In terms of our vision, we came up with four different areas. So, the first is reliable testing, including a broader definition to include all of Lyme borreliosis. And then as other aspects of testing, there would be accurate testing of ticks available, and a longer-term future view is also a point-of-care test, so that it can be available to patients right at the doctor's office, similar we were talking about the example that you can get for your dog at the vet. The second area is treatment guidelines, which have been spoken about, so-but that these treatment guidelines are based on Canadian research and clinical trials that need to happen before that point, and that they cover off each phase.

So we spoke yesterday around acute post-treatment and chronic Lyme, and that there isn't the current focus so heavily on the presentation of the bullseye rash, and that as a subsection of this that there would also be Lyme-literate physicians, which we've spoken about across all specialties. So whether it's mental health professionals, internal medicine, infectious disease, etc.

The third area is the recognition of Lyme disease in all its forms by doctors in the medical community, disability, and social supports, as well as insurance, so that the financial burden can shift away from the patient. And then, the last part is coming up with an effective vaccine. So, ultimately again, future goal a vaccine that can be reliable and doesn't require multiple boosters, and that we can count on. That was our vision. Thanks.

Lise: There's still energy, okay. Again, we're trying to keep it short, because I really want to spend a significant amount of time on your ideas for moving forward, as well. Go ahead.

Gwen: [1:33:42]

(Inaudible) I'll burn through this. My name is Gwen Barlee and…

Lise: Not that fast.

Gwen: I won't burn through it that fast. I'm from Vancouver, and our table, can you put up your hands? We had an amazing table and generated a lot of great ideas. So, first off, we wanted to see protection of doctors who exercise clinical judgement, and in particular, treat beyond the IDSA guidelines. Suspend two-tier testing, clinical diagnosis acknowledges having supremacy. Remove misinformation on Lyme, for instance that 80 percent of patients show perfect bull's-eye rashes. Acknowledge that Lyme disease is a borreliosis infection and also that it often is accompanied by co-infections. Include in definitions of Lyme disease definite cases, probable, and possible, and have all those cases reported to public health agencies. Let GPs have the ability and authority to diagnose and treat, and take over treatment for this chronic condition. A majority of guideline panellists should be from the primary care specialty, recognize holistic treatment in particular allow patients to claim expenses for insurances and taxes, particularly if an ND or a GP prescribes.

Research patients should be involved in design and funding allocation. Transparency, having open communication channels, and for instance, there was a Queens invitation-only science conference about two or three weeks ago, that was about Lyme disease. It would be very helpful, I think, to people in this room to find out what the conclusions were from that conference. Reduce, ideally, the dichotomy between the two camps. Have accountability in the development of guidelines. What's the timeline and how are patients going to be involved, and their representatives, in the development of those guidelines. Help to ensure the integrity of the blood supply in Canada for Borrelia and especially other tick-borne infections. Capture cases of chronic Lyme disease-I'm getting close to the end-and then, I have one that wasn't brought up but I think is important, need transparency around the use and misuse of pre-test probability models on positive test results. Longer term, we'd like to see tissue sampling and a biorepository established and not controlled by one group, and Canadians deserve treatment in Canada that is between holistic and (inaudible) guidelines. Guidelines need to acknowledge and discuss unknowns and knowledge gaps. Canadian version of ILADS considered sexual transmission be explored and guidelines need to be routinely updated as knowledge and research progresses. Thank you.

Lise: We have a few more in the room, and I'll go back to WebEx for one more before we close this segment. Go ahead, sir.

Tom: [1:36:30]

Thank you, my name is Tom Renke and I advocate for my wife. I'll try not to list the items that have already been talked about, but quickly, family doctors must be aware of tick bites and best practices and quickly get to (inaudible) 30 days of antibiotics, that's just a given.

Support by insurance companies was mentioned, but also employers. Workplace accommodation. A lot of people, they're sick, but they want to work. They want to contribute and be part of society. Patients should not have to train their doctors; it seems like that's where all the effort seems to be going. Patients should receive an overall holistic plan of action. They shouldn't just be given instructions for this one visit, but how should they live their lives, like, put some context to all of this for their health. And I think we also earlier mentioned the possibility of a Lyme-literate designation for Canadian doctors.

Lise: Okay, thank you. If you can move forward to the microphone, yeah.

Michelle: [1:37:58]

Hi, my name is Michelle Gagnon. We need Lyme literacy in health care professionals. Physicians need to understand the different dimensions of Lyme. We need a patient-centred approach. Every person responds differently, so treatments need to be different for everyone. Tick bites need to be taken seriously and treated properly, immediately.

The experience of this whole group is very important. We need a national database. Most people here are probably not included in the national database. We need that to change, whether it's an online thing that people fill out and, you know, whatever. It's very important because everybody in Canada needs to know the real numbers so it's taken seriously.

Doctors I know laughed when I had hoped that things would change from this conference, so I really think the College of Physicians needs to be on board, and they need to allow the doctors to treat without fear of losing their license. This is number one priority, here. And perhaps an online Lyme-literate doctor could be hired right away, and doctors could be able to access this online person to be able to give recommendations for doctors because it's a very complex illness as we all know and a Lyme-literate doctor is needed for correct treatment.

As far as education goes, many are getting Lyme from dog ticks, so people need to know it's more than black-legged ticks, and patients should be treated with this respect and should be treated based on symptoms regardless of a known tick bite or endemic area.

Lise: Thank you. Just before I come to our last person in the room, I'm going to go to one last person on WebEx, if that's okay. All right, so do we have anybody else on WebEx?

Operator: Yes, we do have a question from Carolyn Stingle. Please go ahead.

Lise: Okay, go ahead.

Carolyn: [1:40:15]

Hi, can everybody hear me okay?

Lise: Yes, please go ahead.

Carolyn: Okay, thank you. I'm Carolyn Stingle, I live in Victoria, BC, and I brainstormed my group of me, myself and I this morning. If, despite excellent awareness and prevention-this is in the future, my future vision-if, despite excellent awareness and prevention, if I still got sick, doctors would be kind, respectful, and open-minded, and good listeners when I went to see them. Family doctors would immediately suspect Lyme, or other tick-borne infections when I came to the office with a tick bite, and preventative treatments, whether it would be antibiotics or a future cure or other type of treatment, would be offered immediately and would be fully covered by the provincial health care plan.

If there was no tick found, if only symptoms were presenting, the doctor would include Lyme and tick-borne infections in her or his work-up of conditions that were ruled out. Testing would be extremely accurate and reliable, and would test for a wide range of wild strains of Borrelia, as well as co-infections. Test results would be fully disclosed to doctors and patients and clinical diagnoses would be used and recognized and we wouldn't rely on test results unless they were extremely accurate. Reporting of Lyme and co-infections would be straightforward, simple, and would result in accurate statistics. Doctors would be able to get training to become Lyme specialists, and just our general family physicians would be very knowledgeable as well.

Restrictions on antibiotic treatment and other kinds of treatment for Lyme and co-infections would be lifted. The patients could be treated according to individual need until they get better. Lyme specialist doctors would team up with Lyme specialist naturopathic doctors and other types of health practitioners to create comprehensive treatment plans that support the whole body's recovery. IV antibiotics and oral antibiotics would be readily available to Lyme and co-infection patients as well as supportive therapies. Nurses would be trained to treat Lyme patients with IV in their homes as an option because it's often very difficult to get out of your house when you're very, very sick. All treatment would be covered by the provincial health care plan, and health insurance.

There would be no arguments about covering for Lyme treatment. And Lyme and co-infections would have as high a profile in the media and in the medical community as cancer. You wouldn't get those blank looks anymore; people would be instantly sympathetic and want to help. Disability programs would recognize Lyme and co-infections as legitimate disabilities. We wouldn't be losing our insurance coverage because of this whole controversy. General practitioners would be knowledgeable about every stage of Lyme and co-infections, blood banks would screen vigilantly for tick-borne infections.

Pediatricians and ob-gyn docs would be very knowledgeable about preventing transmission of Lyme and co-infections during pregnancy, and would treat infected infants and children very effectively. Research would be generously funded and prolific. A cure would be found and made available. And green ribbon events, similar to cancer fundraisers, would be commonplace and endorsed by big corporations and government, and we'd have so much support that we'd all get better. Thank you.

Lise: Thank you. All right, the line has proliferated again, so I'm going to ask all of you to be very, very brief, because we need time on how do we get there. Go ahead, please.

Esther-Ann: [1:44:18]

My name is Esther-Ann Davies, and I live here in Ottawa. A lot of what we've discussed has been mentioned, so I'm just going to focus on the ones that haven't, okay? So basically, in our perfect world, not only would we have immediate testing when we went into the doctor and immediate treatment, as has been discussed, but our doctors would have access to these centres of excellence that are being discussed. But in those centres of excellence, we would have ILADS-trained MDs, NDs. They would be the equivalent of what I would liken to, say, the Heart Institute here in Ottawa. They would be known worldwide for the research that was being done, for the treatment that was being offered, and from a research point, we would be looking at what was being done in the world and not looking at how to pick it apart, and instead, we would be looking at how to expand on it, how to move forward and actually bring our country to the forefront of research and treatment in Canada, which is where I believe we should be.

Also, in order to make that happen, though, research needs money. Grants need to be out there, and in order for people to get grants, people have to-there has to be widespread knowledge about Lyme. So, education is key, and that's where things come full circle. But it would be nice to see Lyme disease as being researched extensively, just like HIV was done earlier on.

We would also like to see naturopathic doctors included under the provincial health care, so that we have a more inclusive approach to medicine, where MDs and NDs can work together, and both can be Lyme-literate and can be supported and funded. But, that we actually have a more holistic approach to treatment. Anything else I missed? (Inaudible). Thanks.

Lise: Thank you. All right, very briefly, three other people in the room, and then we must cut this off.

Julie: [1:46:27]

Okay, my name is Julie, and I'm from North Bay, Ontario, and I would like to say that there was a mention of a patient-centred database, and it was suggested a database of numbers based on possible, and whatever. I would like to continue to go further with that and say that the database should include treatments of patients, so that our profiles are actually put in there. Unlike many of you, I actually was in remission after being treated in the States. I came out of remission because I picked up a virus. My immune system then had to work on too many things at the same time, so I'm no longer in remission, even though I went to the doctor with a treatment that had worked for me, personally, knowing exactly what would likely put me back into remission. I was still denied that treatment, and cannot afford to go to the States. Now, if that databank existed, maybe the first time they won't say, absolutely, that it cured me, but if it happens again a second time, that goes that one step further to prove that what worked for me worked for me again, and that could be used for other people and if a database like that was created of these treatments that were working for people, the doctors could access, I think it could help them in treating more people.

The time thing is absolutely vital. Certainly, so many people, the early treatment is much more likely to fix the issue, but unfortunately, those of us who are in the late stages are not acknowledged by the doctor. I was dismissed simply because the tick was so many years prior to, by the time I went to the doctor I was in late stage Lyme arthritis mode, and I mean, eradicating it from me is virtually impossible. Quick, yes, but also you have to recognize patients can arrive at any of those stages, not just the early one.

The last point I would like to make is not specific to Lyme, but I think is extremely important and needs to be addressed, is our doctor shortage. I don't know what it's like across Canada, but in Ontario, we probably only have 25 percent of the number of doctors we require. So, for me to be able to go to the doctor and have the amount of time that it takes to discuss not 40 symptoms, but 78 when I first went in, is not just-can't happen because we don't have enough doctors, and they can't give us the time. Thank you.

Lise: Okay, thank you. Yes, I need to go back to WebEx for one more, and then I'll come down to you. So, WebEx, please, next speaker?

Operator: The following question is from Emily Holmes. Please go ahead.

Emily: [1:49:09]

Hi, good morning. Can you hear me?

Lise: Yes, go ahead.

Emily: Yeah, I think most of the things that I had down have been covered. The one thing was just simply that even if the patient doesn't remember a rash right away but comes back and says, "You know, I do remember, two years ago, there was this rash," and they are experiencing unexplainable symptoms, that you know some type of treatment or testing should be offered. I guess that's pretty much all I have to offer, because everything else I had written down has been mentioned. Thank you.

Lise: Thank you very much, appreciate you being brief. Go ahead.

Julie: [1:49:59]

Hi, I'm Julie Meickle and everything that we had at our table has been mentioned. One thing that hasn't been mentioned, a husband advocate over here was talking about people who want to work. So, the people that want to work, that especially do physical jobs, it would be really nice to have some kind of funding for education to re-educate the people that have physical jobs to do something else that they're capable of, that they, you know, they can't stand or they can't lift things, for example.

Lise: So, beyond the support by insurance and employers, that re-education (inaudible).

Julie: The re-education, because we want to work. Thank you.

Joanna: [1:50:37]

My name's Joanna, and I'm from Toronto. I'm not going to repeat what everyone else said, but there's something that I noticed was missing from everything everyone was saying, and that is great, what we're doing moving forward, but we know what has happened in the past. Where's sort of the recourse for those of us who have already spent $100,000 or more? What's going to be in the framework that's going to address us and get that money reimbursed to us, is the first problem. And what's going to happen-what sort of recourse do we have? A sort of database to report the doctors who did certain things that were above and beyond abuse that we could report? Because those are the first doctors that you have to go to and make sure that they're following any new guidelines that you have, because they're going to be the most resistant.

Lise: Okay so, we're shifting into recommendations with this, so thank you, and you appeared magically. You weren't there last time I checked. Very, very, very briefly, because really, we need to move on.

Cecile: [1:51:34]

(Inaudible) to the point. My name is Cecile Gough, I live in Guelph, Ontario, and I have a recommendation. I recommend that we create an amendment to the Health Insurance Act, which is a provincial act. I am asking for all ministers of health and MPs to get involved with this. I've spoken with Elizabeth May, Mike Schreiner, MP Ludwig, MP Lloyd Longfield, MPP Mike Mantha, and MPP Liz Sandals. I recommend that everyone, when you go back home, contact your MP and MPP. This conference is amazing, I think it's great that we are creating a framework and a strategy, but I'm calling on the government to create an emergency strategy, because this is an emergency. You recognize, now-our Chief Medical Officer recognizes the statistics, and there are those of us who are living with Lyme now, who need help now.

Lise: Okay, we have moved beyond group reports on vision. Thank you very much. I have to stop the visioning reporting here, because we're moving so far into recommendations and ideas for moving forward, and we need to capture as many of those as possible. So, I'm going to do a very brief table discussion this time around. Document your ideas for moving forward. So, how do we achieve that vision? A lot of them have come up already. I know that there are people on WebEx who want to speak. I'm going to, when I open it up again, focus on that: short-term, medium-term, and long-term ideas for putting in this federal framework, that will achieve the visions that you've described.

If you need a break it's self-managed this morning, there's not going to be a time for break, obviously, we're already almost at eleven. At five after eleven, by the clock here in this room, I will ask for what you've come up with. So, a suggestion: the people on this side of the room start with short term. In the middle, start with medium term, and on the right, start with long term. So that way, if you can't get to all of them, somebody will have started at one of those and go to others as you move on. Ten minutes group discussion. What are the best ideas that you can come forward for this federal framework, so that we can achieve your vision? Ten minutes.

Lise: [2:05:34]

Hello. I hate to interrupt, but we do need to capture your ideas, and so I would like to bring it back to plenary, please. I'm sure if we let ourselves, we could talk about this for weeks but we must come back to plenary. So, I'm purposely kind of filling time until I have everybody's attention. I think we're there now. Can you hear me now? We're good? Okay. So, you know, I apologize, we have a limited amount of time, I know you have tons of other things to talk about, but we do need to capture your ideas, and so I'm going to move to plenary now.

The way I'm proposing to work it, to make sure that we have a good mix, at least initially, and then we'll continue to fill it in as we go, is I'll start with a couple of ideas on the short term. So, when I go to your table, I don't want all of your ideas. I just want one, maximum two, ideas to start, okay? Just so we start to get a flavour. And so, those of you who are reporting for your groups, you need to be listening carefully. The same applies for those of you who are speaking on WebEx. Listen carefully to what others are saying. Please do not repeat, because we won't get to all the ideas if we're repeating the same ones over again, okay? So, we'll go to short term; a couple of ideas in the room, an idea or two on WebEx. Then we'll go to the medium term; couple of ideas in the room, an idea on WebEx. Same thing for long term, and then we'll do a mix. We'll go first come, first served, trying to balance out. I'm counting on you not to do too much repetition because we need to be done by twelve, we need to summarize everything that you've brought up, and then report it back this afternoon. So, we're kind of crunched here. Ready to roll? Okay, so I'll come to this table, I saw your hand up first. One or two ideas for the short term, please. Microphone? Yes.

Tom: My name is Tom Renke, and our ideas were allow the doctors-short term, allow doctors to treat with antibiotics in Canada without risk to their medical licence.

Lise: Okay, thank you.

Tom: And I guess, as well, one other: treat based on symptoms.

Lise: To treat…?

Tom: Based on symptoms.

Lise: Based on symptoms. Okay.

Tom: Clinical.

Lise: Thank you. Yeah, if you can hand the microphone back and just behind you. Yes, go ahead.

Female: [2:08:07]

Our first short-term goal is we would like to see Canada Health [sic] put forward a moratorium for at least five years on doctors being allowed to treat as they feel is best for their patient. This is being done in Minnesota. They have a five-year moratorium. They will not be harassed, they will not be hassled, and they will not be forced to retire out.

Lise: Okay, so that sounds like exactly the same idea I just heard from the other table. So I need to be careful. Allow them to treat without risk and without punishment. A five-year moratorium, yes?

Female: A moratorium is very different, though. A moratorium is the way to do it.

Lise: Okay, a five year moratorium.

Female: Right, and the second one is absolutely, without question, patients must be brought to the table after this framework, with equal representation to anyone else in that room. Because quite frankly, most of the people in here are better educated at what Lyme is all about than those who will be at the table.

Lise: Thank you.

Female: And I said that nicely.

Lise: You did. And jokes aside, I very much appreciate the spirit of respect that I've seen in this room, so if you can keep in that direction, that would be wonderful. On WebEx, one idea for the short term. I know that might not work for you, so I'll just take the first person who is ready to speak on WebEx. Go ahead.

Operator: Thank you, the first question or comment is from Heather Wolfried. Please go ahead.

Heather: [2:09:49]

Hi there, can you hear me?

Lise: Yes, go ahead.

Heather: Okay, I'm sorry if I do repeat. I have Lyme and my short-term memory is pretty bad. I'll be really quick. One thing we would like to have is a site immediately set up for communication that comes directly from the Lyme patients to those that need to know. For instance, if we could have a site for patients that can send or connect with the science minds, just to give them some ideas of things that we have seen or noticed so that they can work on them, consider them, verify them. For instance, some of us have noticed that genetic mutations-97 percent of Lyme patients seem to have the same thing. So, this is just, like, one idea. A lot of Lyme people talk about different patterns, so this would be one site. Another site…

Lise: I've had your sound cut off, and I apologize for that. I'm going to turn you back on for you to wrap up in, you know, ten seconds, because I need to move quickly from idea to idea. Go ahead.

Heather: Just two other sites: one is for immediate reporting when we are bitten by a tick, in case the doctors-because we know they don't report. We would like to have the same opportunity. And the other one is basically the bedside manner. We want a place to be able to go immediately. So, if we say we have Lyme, can we go online somewhere, and not the local health authority? So, those are basically what we would like to have: three communication links. Two are immediate, the science one can take a little bit of time. It doesn't need to take a year, but…

Lise: Okay, thank you. Thank you very much.

Heather: Okay.

Lise: Medium term. One idea from somewhere in the-yeah, I'm not going to do every group right away, I'll come back. I'll do medium term and then I'll cycle back. So, I won't forget you. Back of the room, I have an idea for medium term. Just a minute, the microphone.

Female: [2:12:04]

Thank you. We have a ton of really good ideas so it's hard to pick one, but what the young lady, Cecile, just said, that we do an emergency amendment to the Health Act or ask the…

Lise: So that's a medium-term idea?

Female: Sure.

Lise: Okay.

Female: Because it probably can't be done right away. Two: begin to fund out-of-province and out-of-country valid medical care, and also to retroactively fund what people have spent.

Lise: Okay, so reimbursement. A different medium-term idea? The table at the back, there?

Female: [2:12:47]

We had a medium-term goal to have an annual gathering with good representation from patients, the government, as well as the medical community, and that is to track the framework, the status of this framework, and also update the guidelines.

Lise: Okay. So, for those on WebEx, we have two medium-term ideas, one on an emergency amendment to the Health Act, to fund out-of-country expenses, and reimbursement to those who have paid already, and then some annual gatherings to track the framework and review the guidelines. Can I have somebody on WebEx, please?

Operator: Yes, the following question or comment is from Caroline Lennox. Please go ahead.

Caroline: [2:13:34]

Hi, can you hear me okay?

Lise: Yes, go ahead.

Caroline: Great. We also have a whole lot of discussions on a couple of online chat groups and (inaudible) I was given no notification that I was cued up, so I'm going to have to just wing it. I'm just going to say one of my own, which is the immediate one, that we need to define this disease properly immediately, and that includes the goal of (inaudible) in immune function, and we need to immediately drop the Dearborn CDC case definition from the U.S., which excludes seroborreliosis, and also we need to include co-infections in the definition of the disease. And never again go with these faulty case definitions. Thank you.

Lise: Okay, thank you, thank you very much. All right. I have a number of tables who still have ideas to bring. I will come to you later. What I said is I'll sample short, medium, long, and then I'll go through the room for whatever is still available. So, a long-term from over here? Yes, the microphone is coming to you. Just raise your hand so she knows who to go to. Okay.

Female: [2:14:49]

Hello, this is a long-term suggestion to create a centre of excellence for treatment. I think this falls under short term, long term, and medium term. And so, what kept emerging was active participation of patients in research, and the ongoing educating of physicians and mandatory upgrading.

Lise: Okay, excellent. Another long-term idea from somewhere on this side of the room? Behind you, I think, in the rows of chairs, you've got a couple of people. The grey sweater behind-okay.

Female: [2:15:27]

The national framework should include an evaluation framework to measure the progress and success, and needs to be flexible and responsiveness to the evolving information. And doctors need access to some kind of a database for information that they can access and link this framework to all chronic illness, and take lessons learned from Lyme and apply it to other illnesses, and take advantage of experienced doctors and Lyme-literate doctors, and actually treat the Lyme and co-infections.

Lise: Okay, I need to pause you there. I've written down two of your ideas. If you could hand the microphone back, please. We're just taking one or two ideas at a time per group, and then if any of your ideas have been missed, later we'll come back to you. So, I wrote, "Include an evaluation framework and a database of information for doctors." I'm going to go to WebEx for the next contribution, please.

Operator: Once again, please press '*1' at this time for questions and comments. The following question or comment is from Shari Allen. Please go ahead.

Shari: [2:16:38]

Hi, can you hear me?

Lise: Yes, go ahead.

Shari: Okay, now, I'm sorry about this, but I had wanted to respond to the previous forum. I don't have anything to contribute to this particular one, other than-let me just refer back to my notes and see if there's anything appropriate. Sorry.

Lise: Okay, so we'll keep you on the line, but mute you for now. While you're looking for that, I'm going to take somebody else in the room.

Shari: I do have something here just (inaudible), a tick does not have to be attached for 24 hours to transmit. Just better understanding of some falsehoods that doctors are perpetuating.

Lise: Okay, so recognize that the 24-hour limit is not accurate. I'm using the wrong language, probably, but I'm hoping that you'll forgive me for that.

Shari: Yeah, and in the near term, reporting of bans on blood testing. I think that would be helpful rather than just a positive or negative result, but also recognition that doctors need to make patients aware that a negative blood test does not necessarily mean you don't have Lyme. I think that needs to be conveyed to the patient, because patients don't often see those type of results.

Lise: Okay, thank you very much, appreciate your being brief. Okay, I'm going to pause on the applause, and at the end, remind me to make sure that we applaud everybody's contributions at the same time. So, we'll be able to hear you more and interrupt you less. Something from this side, people who have not spoken yet? So, now I'm going randomly, so please specify if your idea is for the short, medium, or long term, and I'll just write them in here. I'll probably run out of space, but we do want to hear them all. My mic runner is queueing up to those of you who have your hands up as well. Go ahead.

Male: [2:18:31]

So, this is short term. We would have national training of family physicians about the existence of long-term Lyme and how it relates to other chronic illnesses, and how to assess and treat this disease.

Lise: Okay, so national training of family physicians. Up over here, next.

Female: [2:18:49]

This is a medium goal, six months to a year. GPs need the ability and authority to diagnose and treat, to take over this chronic condition by-set into a diverse committee, split into task teams who are tasked with addressing the key topic areas that we have explored at this conference, including treatment and surveillance, etc. This committee would include health care professionals including Lyme-literate doctors, IDSA, MDs and GPs, and researchers. As long with patients who are clinically diagnosed not necessarily tested positive in Canada, to continue this conversation, to develop standardized training in a timely manner, and that it's Canadian-based.

Lise: Okay, so using a diverse committee to address many of these issues. I'm going very short-hand on the flip chart and summary, but we have fabulous note takers in the corner here, capturing the details. Go ahead, at the back, and I'm going to ask you to actually move to the other side of the room, and your colleague is going to take the one on the left, here.

Female: [2:19:53]

Okay, our recommendations are with regards to the guidelines as they exist right now. One is to remove the term 'endemic area' from the description of when you should treat, as well as revisit the treatment that comes along with it, which currently is the doxycycline for one day as a preventative measure. Just revisit that, just to make sure that it's evidence-based, with the appropriate treatment that should be given now.

Lise: Okay, excellent, thank you. Over-I'm not sure where next. Okay.

Male: [2:20:31]

I'd like to speak to the issue and the role of the Colleges, and the importance that they play, on the one hand for, obviously, protecting the professions, but there's also the side of protecting the public, and the specific recommendation would be that they are engaged in looking at what their role is in fostering, guiding, and supporting innovation among their professionals.

Lise: So, one idea would be, maybe, to have colleges look at how they promote innovation. Is that kind of a medium or long term?

Male: I would say it's medium, and it is basically-they are in, you know, they are the ones who are, in a sense, exiting a lot of physicians, because they are placing so much emphasis on protecting the profession, but in doing so they are completely undermining their role as nurturing and developing innovation.

Lise: Okay, thank you. Where's my other microphone? At the back, here, please.

Female: [2:21:41]

To tag onto that idea, we would like to have a facility for the doctors who have lost their licences to be reviewed and possibly reinstated as some of the-and apologies, as the leaders of the possible healing for Lyme. And secondly, this could be longer term, some of the patients at our table would really like to see a database of the doctors who have been Lyme-denying and abusive to patients, that there be a database set up and appropriate process to look at their licences.

Lise: Okay, and that kind of feeds in with the idea of the sites for communication.

Female: Yes.

Lise: Okay. I am going to come to you next, but first I want to go to online. So, WebEx, another person, please? Let me know if it's a short, medium, or long term idea.

Operator: The following question or comment is from Sheila Steven. Please go ahead.

Sheila: [2:22:56]

Hello, I'm from British Columbia. Mine is probably a medium request, and that is that the Member of Parliament from every riding in Canada be responsible, that the health private and public sector become aware of this conference. A summary of the conference should be sent to them personally. Thank you.

Lise: Thank you. Over here, I've got the microphone, go, yeah.

Male: [2:23:29]

Something my colleague forgot to add onto the looking at college innovation is also possibly looking at working together with other colleges, such as veterinary and naturopath, just to add onto that idea. And the other one is the beginnings of-this is ideally short term, but probably long term-the beginnings of collaborations with clinical researchers to investigate protocols, because in the U.S., there's not a single research study happening with the effects of the antibiotics right now. And for, like, professionals and respected individuals to be working in that.

Lise: Excellent, thank you. I'm coming to the middle, here, next and then-we have miraculous microphones happening here.

Female: [2:24:16]

So this would be for the medium term, so would be to maintain a budget for research on Lyme disease, and also maybe a sup-point for this, the use of a clinical database prospectively so, yeah. Mid term, also. Thank you.

Lise: So, money and prospective use of the clinical database. Merci. I'll come to you here in the front.

Female: [2:24:48]

I think that, in the short term, Canadian doctors should be allowed to communicate with the Lyme-literate American doctors so that people's treatment can continue in Canada, get all their antibiotics here, but still be able to visit the U.S. doctor to know if any changes need to be made. But there needs to be that communication.

Lise: The communication across the border, okay.

Female: One other thing, can I? That Lyme should be recognized as a legitimate disability.

Lise: Is that short term?

Female: No, that's-yes, sorry, that's short term.

Lise: Okay, I'm putting my own filter on this one. I'm just surprised it would happen that quickly, but okay. I'm going to go to WebEx again. Just for those of you in the room, don't play with the on/off buttons on the microphones. Your sound is off until the technician turns it on, so I'm kind of cueing him to let him know who's next. Onto WebEx, please, for another comment.

Operator: Thank you, the following question or comment is from Carolyn Stingle. Please go ahead.

Carolyn: [2:25:52]

Can I be heard okay?

Lise: Yes, go ahead.

Carolyn: Thank you. To elaborate just a little further on this idea of doctors who refuse to help a Lyme patient, I'd like to see an official place to report that, and to see that resulting in immediate mandatory education for that doctor as a consequence, because that would be the most productive way to address it. And then, the second point I wanted to make was that the Government of Canada create, in collaboration, equal partnership with CanLyme, a Lyme literacy hotline and website where anyone can call in whether it's physicians or people from the general public, to get resources referrals and support. Thank you.

Lise: Would that be short, medium, or long term, do you think?

Carolyn: I think those are both probably medium, although the one about doctors is fairly urgent.

Lise: Okay, and it had been put in the longer term, so I'm just going to add a notation that it could be short term as well. I've lost track of who my next microphone is. Over here in the middle, and then I'll come here. Okay, go ahead.

Female: [2:27:06]

Hello. I'd like to expand on some of the topics that have already been brought up. I know that some of you have mentioned research, and I just wanted to say that our group had short, medium, and long-term goals with that respect. And essentially, we see the necessity for an infusion of resources and funding right now, in order to kick-start research, because we know that it's going to be several years before the results actually hit publication. So, let's start making that available now. In the medium term, we'd like to see the opening of both the treatment centre that we had proposed previously, but in collaboration with a research centre, so that-I know a theme that came up yesterday was the fact that it's very difficult to get well-defined cohorts, and this is an excellent opportunity.

I do want to point out, though, that patients don't necessarily want to be seen just as tools okay? So, this is a collaborative initiative that involves a patient in the study, not just as an object that is being studied. This also involves the collection, for example, of a biobank, and strategies not only to collect samples as we typically would for cancer, as an example, but also looking for ways that we have to optimize this for Lyme and tick-based infections. So for example, to follow up on Dr. Zhang's work yesterday…

Lise: If I can stop you there.

Female: Of course.

Lise: Let's avoid the examples. I know they bring rich information, but we'll come back to those later if we have time. Just the ideas. Go ahead.

Female: Sorry, a strategic biobank.

Lise: Okay. Thank you very much, I appreciate your patience with me. Okay, we were going here next, I think.

Female: [2:26:48]

We're long-term, but some of this could be a little grey. Vector eradication, multicentre trials or methodology to create them, because it's such a variable illness. We would like to see autoimmunity issues brought into the loop, especially for those that have been misdiagnosed or long-diagnosed with autoimmunity when it could, in fact, be one of these infectious triggers. The other thing, I think, in this community, when we say Lyme most of us are inclusive of all the co-infections, etc. Perhaps we should be re-tagging this as something like MSIDS or (inaudible) something like that.

Lise: Okay, thank you. We'll stop you there, and eventually-you have a couple of hands that have been up for a while, but I'll come here at the back, first. Go ahead.

Female: [2:29:43]

Okay, we think of this short-term. One thing that we need to face is it's all about the money. At the end of the day, it's all about the money. So, we want to see immediate funding for short-term research. We want it now. We also want to see the Canada Health Act change so those doctors who will not or don't or misdiagnose or mistreat us, I want to be able to sue them. And we can't do that here. I also want the IHC, the International Health Code, that are being used by all the provinces to include Lyme, because right now, doctors get paid no matter what code they use, but it's not definitive for Lyme or any of the co-infections. And that leaves the last thing: doctors get paid whether they screw up or not. We don't. We have to spend the money, they get paid. So we need to have a forum, which by the way, we do, somebody mentioned, about a place to go and list doctors. I got it.

Lise: Okay, so we have that already. Thank you. Over here, and then I will go to WebEx for the next one. Go ahead.

Female: [2:31:10]

Hi this is a medium goal, that holistic medicine prescribed by NDs and MDs should be a tax write-off and not be subjected to taxation as well.

Lise: Okay, so no taxation on holistic medicine by MDs and NDs. All right. Going to WebEx.

Operator: Thank you. The following question or comment is from Doris Owen. Please go ahead.

Doris: [2:31:35]

Yes, the main thing we need right now, short term, is massive education of doctors, so they're not throwing out ticks and saying, "We don't have it here, we don't have Lyme here." Even in emergency rooms they're saying, "We don't have Lyme here."

Lise: Thank you.

Doris: In all provinces doctors should be massively educated and…

Lise: Okay, thank you very much. So, massive education of doctors. I've noted it, although remember that we are in the guidelines and sharing of best practices. Our colleagues in education and awareness should be capturing this, so let's try to focus on guidelines and best practices. I did have you cut off, I'm going to give you another ten seconds to complete your thought. Please come back online.

Doris: Oh, it was just that they need to be reassured that they won't be harassed, and also that clinics can't turn away Lyme patients, and doctors can't turn away Lyme patients.

Lise: Okay, so the protection for the doctors.

Doris: Thank you.

Lise: Thank you very much. You've noticed me managing the microphones a lot more tightly this morning. I'm not trying to be rude, but it's very difficult for the interpreters to have two voices at the same time, so I'm being a bit rude, and I offer a blanket apology. Who's next? Over here. And, oh sorry, in the front and then I'll come to the back, and please make sure if you've spoken already, try to make sure that other people have a chance to speak. Go ahead.

Male: [2:33:15]

So we had a great idea, hopefully short term, that there would be a website available where they could do a survey checking how much patients have spent on outside-of-Canada-on treatment, just to see how much it really costs us and also-so, it's checking for the burden financially, and also checking for job loss, and just to have that data there to check on.

Lise: So, research on the financial impacts on people suffering from Lyme. Good. Excellent. Back here.

Female: [2:33:46]

Hi. I think it's short term, so immediate coverage for naturopaths and prescription rights for naturopaths across Canada.

Lise: Okay, and we had something similar in the medium term around holistic medicine.

Female: That was for, yeah, I believe that was for tax benefits for their prescriptions but I'm talking about prescription rights across Canada, as they exist now in BC and other-I don't know if BC is the only province. Okay, so across Canada.

Lise: Okay, prescription rights for naturopaths. Thank you. Over here.

Female: [2:34:42]

Hi, my short term would be to have a conversation with what's happening in each province right now. Since we've been the foot soldiers so far, maybe we can have some common goals. And then long term would be to develop a national team, international team for best practices worldwide, be on a committee for that.

Lise: Okay, so the sharing of best practices between provinces short term, national/international longer term. Okay, thank you. At the back?

Female: [2:34:49]

We'd like this to be short term but suspect it may be medium term. We would like the new guidelines to be made fairly, and made without conflict of interest, with patient input and patient advocate input.

Lise: Okay, so new guidelines fair, patient input, no conflict of interest. I'm going to go to WebEx for the next one please.

Operator: Thank you. The following question or comment is from Catherine Leanne Morgan. Please go ahead.

Catherine: [2:35:22]

Yes, hi. I wanted to make (inaudibly) touch on a little bit but I think that we need to reach out to the international community that is dealing with Lyme and co-infections, researchers, and also medical doctors who are treating this in Europe and in other places in the world, and find out what their best practices are, what they're doing for treatment and how they're instituting it.

Lise: Okay, thank you very much. Who was next in the room? At the back, here, on my left?

Male: [2:36:01]

As an immediate action item, in addition to prescribing authority for naturopathic doctors, I'd also like to see prescribing authority as well as diagnostic tools in relation to Lyme.

Lise: In relation to Lyme?

Male: Correct.

Lise: Okay. Thank you. Over here?

Female: [2:36:18]

For short term, access to a Lyme-literate doctor that is available, either by phone or online, that doctors have access to for immediate information and acceptance of good labs and, as a medium term, education teaching in schools for children and at universities, for students in the medical field, and also the surveillance goes beyond ticks to recognition of other forms of transmission.

Lise: Okay. And we are moving into education and awareness, but that's all right. Go ahead.

Female: [2:36:55]

We would like to see transparency and patient input into publicly funded research for Lyme disease.

Lise: Okay, did you…

Female: That would be all, short, medium and long term.

Lise: You know, I think what I'm going-I don't want to lose these ideas so I'm just going to continue adding ideas where they fit, and I'm not going to worry too much about whether they're short, medium, or long term. So, patient input into publicly funded research.

Female: And transparency, yes. Thank you.

Lise: Okay. Who was next? Over here, and then I'll come back to the middle.

Male: [2:37:26]

Thank you. Now, this may be like trying to catch the wind, but maybe relative control of the tick population. Like, I know we're tracking where they are, but I don't know. It's just one other thing.

Lise: So, control of the tick population, if that's even doable, let's focus on that.

Male: Yeah, if that's even doable, I don't know, but that's just an idea.

Lise: Okay, thank you. Over here.

Female: [2:37:44]

We had a discussion at our table about the need to, you know, where is this money all going to come for research, and one of the things that we thought about was not only the cost to all of us that we've spent with treatment in tracking down a diagnosis, but what about the cost to the Canadian health care system as far as diagnosing us? So, a cost analysis to show the public health burden and the financial burden of our health, through the diagnosis, through MRIs, CTs, lumbar punctures, how much has that cost the government, and then divert some of that money. Say, "Here's the money that we used to spend on diagnosing you; we're going to put it towards research."

Lise: Okay, so look at the business case, and that ties in with the funding you've talked about in the survey of the costs as well. I'll go to WebEx for the next one.

Operator: The following question or comment is from Emily Holmes. Please go ahead.

Emily: Hi, I'm not sure if these have been covered two things to (inaudible) dropping the two-tier which would be an immediate thing. And then, I know that somebody mentioned something about naturopaths. I'm not sure what they said because I couldn't hear it, but there are some tests that naturopaths can't order, from my understanding. I am under treatment with a naturopath, so testing for liver and follow-up because I'm on antibiotics, those things need to make sure that are immediately taken care of, so that we're being properly followed.

Lise: Okay, so we talked about prescriptions and you're talking about testing as well, and that might all be the same thing. I'm very ignorant on this topic. Thank you. Next was over here.

Male: [2:39:25]

Yes, once someone's diagnosed with Lyme, that they are accommodated at the workplace so that they don't lose their jobs.

Lise: Okay, so workplace accommodation. Again, I'm starting to write things where I can find space as opposed to in the timeline, but if you do have a definite timeline please let me know. Thank you. We're over here next.

Male: Sorry, it's me again. So, we're talking about a better-safe-than-sorry approach, so research to prove sexual transmission or mother-to-child or blood or saliva, will take time but warn people that the possibility of protection and prevention in the meantime. So for example, Lyme patients won't donate blood, because tests and research will take time to develop.

Lise: Okay, so being cautious even before the evidence is in, better safe than sorry. Thank you. Over here?

Male: [2:40:19]

Long term, just protection of our antibiotic resources by looking at the prophylactic use of it in animal feed, so that we keep it for things that count.

Lise: Okay, so try to make sure that there's not undue resistance developing on the antibiotics is what I-okay, thank you. I'll go to WebEx again, then I'll come to the back of the room.

Operator: Thank you. The following question or comment is from Carolyn Stingle please go ahead.

Carolyn: Hi, you can hear me okay?

Lise: Yes, go ahead.

Carolyn: Thank you. I'd like to see IDSA guidelines immediately thrown out for treatment and instead, that we adopt the ILADS guidelines for treatment, because as we're working on creating guidelines in Canada, people are still being denied treatment based on the IDSA guidelines, so I think we should go with ILADS until we come up with something even better. Thank you.

Lise: Okay, thank you. I think that came up earlier, but I'm just jotting it down, just in case. We were at the back now and then I'll come to the front. Go ahead.

Female: [2:42:29]

Okay, something, you know, as a country, we didn't learn from HIV, it's been sort of mentioned but it seems to me that, instantaneously, we should be somehow testing our blood supply. We have been told that we can donate blood, okay, so it's in there.

Lise: Okay, so test the blood supply for Lyme. Thank you. Here at the front, yeah, go ahead.

Male: [2:42:03]

I'd like to see the guidelines have advice for clinicians on how to be interpreting results that come back negative in the context of the entire clinical picture, as well as guidelines on what clinicians should do when someone has persistent symptoms that aren't being relieved through use of current guidelines.

Lise: Okay, so persistent symptoms and how to interpret negative results. Go ahead at the back.

Female: [2:42:32]

I was just going to add to the fact for testing, for the blood supply for Lyme, also to include the pathocenosis. There's been studies going on in the States just recently with that but, you know, if you have the co-infection of babesiosis, and someone who had a splenectomy done, and they get an organ transplant or a blood transfusion from someone who has babesiosis, it can kill them. So, it should be tested as well.

Lise: Okay, testing the blood supply, thank you. I'm not sure where we were next. Did you have somebody up here at the front? You have a second person at the back, go ahead, and then we'll come here.

Female: [2:43:16]

I guess this would be long term, that the Canadian Medical Association look at the curriculum for new medical doctors, and perhaps existing doctors, to include more information on nutrition than they're currently getting, and the importance of nutrition, lifestyle, etc.

Lise: Okay, thank you. I'll go to WebEx next.

Operator: Thank you, the following question or comment is from Shari Allen. Please go ahead.

Shari: Thanks very much. I finally got my notes together, and I wanted to contribute that I think it's necessary to have mandatory tick awareness programs in both the public schools and high schools. Not just, you know, letters that go out to the kids, but actual programs, and also mandatory training courses for existing doctors. Not things that they can just opt into, but that are made mandatory.

Lise: Okay, so mandatory education both in the schools and for medical doctors. Go ahead, over here.

Female: [2:44:16]

Allow the acceptance of the use of other labs and their test results, even if they're not CDC-positive or whatever, and the inclusion of potentially positive ITGs as also a clinical tool for diagnosis.

Lise: Okay, thank you. A wonderful array of ideas, here. I think it will take them months just to get through them. No, I'm sorry. I sometimes use inappropriate humour. Okay, anybody else on WebEx? I'm not seeing any hands in the room.

Operator: Yes, the following question or comment is from Barbara Savett. Please go ahead.

Barbara: [2:45:05]

My concern is to have psychologist and psychiatrists consider Lyme as a possible cause of suicide or depressive behaviour in the short term, especially places like Attawapiskat or other Native communities. Thank you.

Lise: Thank you. I did have a few hands over here, and I'm seeing some over here. So, I'll go there first.

Female: [2:45:31]

I just want to build on what people have commented about the clinical judgement coming into play in congruence with the diagnostics, and that sometimes, people test negative and are positive, but sometimes people also test positive and they are negative. So, to go forward with education about what that all can mean, and how important it is to have a literate physician who can walk you through all those possibilities.

Lise: So, more information on the false positives and the false negatives. Okay, thank you. Over here, next.

Male: [2:46:13]

(Inaudible) should not say that Lyme is difficult to diagnose. We saw a huge-in the presentations that the commonality in the complaints, so when doctors think it's difficult they stop trying.

Lise: Okay thank you. Just behind you, there.

Female: [2:46:32]

Just an idea for the medium, maybe, probably, long term. I was thinking that there might be less of a burden on the entire medical community with Lyme if there was a set amount of doctors allotted to each province to specialize in vector-borne illnesses.

Lise: Okay. Set number of vector-borne illness specialists in each province. Over here, and then I'll come to the middle. Go ahead.

Female: [2:45:58]

Awareness into one of the, I don't know if I would necessarily call it a co-infection, but perhaps more of an opportunistic infection, is how the damage of Chlamydia pneumoniae can play in this role. I believe John Caldwell, the (inaudible) guy in the UK, came up with some stats, and that's a huge one-it's very huge in the line-up of diseases that impact Lyme patients.

Lise: Okay, so it's another aspect on the collaboration, making sure that all the information gets fed into the research. Yes, go ahead.

Female: [2:47:28]

Thank you. I guess this would be a short and medium-term goal, to make doctors aware that if they diagnose someone with post-treatment Lyme disease syndrome after a course of treatment by the IDSA guidelines, that those patients should be made aware that they may still have a chronic infection.

Lise: Okay, so PTLD does not mean that there's no chronic infection there, and they should be aware of that. Thank you. I'll go to WebEx for the next one, and then I'll come right back.

Operator: Thank you, the following question or comment is from Ian Kukolski. Please go ahead.

Ian: [2:48:03]

Hi, can you hear me?

Lise: Yes, go ahead.

Ian: Really quickly, just in regards to vector control, eradication has come up. The recommendation would be to work with regulatory bodies to expedite the approval or licence of safe and effective control products that would have a public health impact, such as those that would be controlling ticks.

Lise: Okay, so the products that would help to achieve that. Thank you. At the back?

Female: [2:48:30]

Yes, I would like to include human tissue testing, including post mortem, is vital.

Lise: Okay, human tissue testing, including post mortem. Do we have other hands up in the room? I have somebody here, at the front. Two, actually. You can probably cover the back and your colleague will cover the front, or can you get through? No, okay. Go ahead.

Female: [2:49:03]

Yeah, when we're talking about guidelines, I'd like to see that the psychiatric psychological and social aspects of Lyme disease are included in the guidelines.

Lise: Okay, thank you. And you had another person right behind you there, so go ahead.

Male: [2:49:25]

So, it's been said that the U.S. testing hasn't been researched enough in order to be used, so maybe putting a priority on doing the research and educating the doctors to it thereafter, in Canada.

Lise: Okay, so if it's not been researched enough, then let's get it researched so you can validate it. Okay, thank you. You have a hand right over here, if you want, just-she's coming behind you. Okay, go ahead.

Female: [2:50:00]

I guess this is kind of medium to long term. I guess adding in funding for research into the congenital transmission, as well as we have a need for pediatric Lyme-literate specialists.

Lise: Pediatric…

Female: Lyme-literate specialists.

Lise: Okay, thank you. I'll go to WebEx for the next, and then I'll come to my right.

Operator: Thank you, the following question or comment is from Doris Owen, please go ahead.

Doris: Yes, my comment is short term, and it's the complaint line that's set up should also include complaints about the fact that just one person is sending in all the reports, and most of them are false positives.

Lise: Okay, so tied to the help line and the complaints line that we've talked about, already. No, I was over here on the right, and then I'll come to the middle. Go ahead.

Female: [2:51:00]

Something that could help all patients right now, in the short term, is to acknowledge the immune part of the whole illness, and things like immunoglobulins and sub-classes could be tested, and intravenous IVIG could be available for people for immediate health improvements.

Lise: So, acknowledge the immune aspects of the illness.

Female: Yes.

Lise: Okay, thank you. Over here?

Female: [2:51:30]

A number of studies have been done that show there's an advantage to using more than a single strain of Borrelia in testing. We're not at the point, obviously, where we're going to have the fancy testing that Dr. Dattwyler would like to see (inaudible)…

Lise: Sorry, the microphone's too far from your mouth, and I didn't hear that. Go ahead.

Female: Okay, a lot of studies have been done that show that there's an advantage to using more than a single antigen, and more than a single strain of antigens, in testing, and I think that needs to be examined in the context of the Canadian situation. It is being used in places like Scotland and in China.

Lise: Okay, so multiple antigens in testing. Thank you. Over at the back, here.

Female: [2:52:17]

To have resources available to teachers who are educating children that are affected by Lyme, to understand exactly what the psychological and the physical aspects are of the illness that they're dealing with.

Lise: Okay, so we had mandatory education in schools, and you're talking about resources for teachers. They're linked, but they're different.

Female: Yeah, the children need to be educated about ticks and what to do about ticks, but for those children that are infected, that can impact their learning. And so, teachers need to be educated as to how to help these children, so that they can continue to learn and be in a supportive environment.

Lise: Okay, so beyond the general education about risks, targeted at how to support children with Lyme. Okay, I'll go to WebEx for the next one, then I'll come to the table at the back. WebEx, please, do we have anybody left?

Operator: Yes, the following question or comment is from Caroline Lennox. Please go ahead.

Caroline: Hi, can you hear me okay?

Lise: Yes, go ahead.

Caroline: Sorry again, I didn't know I was in the queue. Here we go, I'll be as quick as I can, thank you. What I'd like to see happening, it would probably be medium or long term, is that the entire patient picture be included when the doctors are looking at it, the whole illness. gordonmedical.com has a discussion there, about including things like mould and micro toxins, looking at a whole picture. We have integrative and functional doctors that do this right now, but they have to charge privately, and they shouldn't have to charge privately, $300, $400 an hour. That should be covered. And things like Horowitz's 16-point Differential Diagnostic Map, which I think is going to be incorporated in the ILADS, is very much about that. Let's look at the whole picture of the patient…

Lise: Okay, thank you.

Caroline: …and alternative doctors, because they are doctors.

Lise: Thank you. Next at the back, here?

Female: [2:54:19]

Yeah, I think it might be very useful to have a directive to the mental health professions, like psychiatrists, that would indicate that there is a term called 'somatopsychic', which means that there are things that appear to be mental health issues, mental illness, that are in fact triggered physiologically, and that many people are being misdiagnosed and put in situations where medications are misused again. They are ill physically, they are given medications that actually worsen the situation for them.

Lise: So, as opposed to psychosomatic, somatopsychic. Excellent. At the side, here.

Female: [2:55:03]

Yeah, look into research to develop non-toxic alternatives to DEET as a tick repellent.

Lise: To food additives?

Female: No, the DEET tick repellent? We need a non-toxic alternative to that, so research for that.

Lise: So, the alternatives to DEET. Thank you. I'll take a few more, and then I think we need to wrap up, it's time for lunch. Go ahead.

Male: [2:55:49]

This is all very very interesting discussion. So, I thought it would be good to add this treatment outcome database, and also clearly monitor how patients really respond to the treatment, so that to avoid this, I mean, to pay attention to patients who don't respond to treatment.

Lise: Okay, so not just the treatments, but the treatment outcomes as well.

Male: Right, it can be part of this, you know, online database, being to monitor the treatment outcome, I think that might be interesting and important.

Lise: And it sounds like there's this real theme going through a number of the ideas that have come up around the sharing of information, the capturing of information, so that it can be used to make better decisions in all kinds of contexts. Over here?

Male: [2:56:13]

Okay. Madame, I will respond in French, and I'll rely on your expertise to translate.

Lise: We have specialists who are in the [inaudible].

Male: Oh, perfect.

Lise: I might sum up in English for those who didn't take the time to take the headset.

Male: Okay. I will try to be fairly brief.

Lise: Okay.

Male: I would like to say that when we all came here on Sunday night, we saw people who were sad when they came to tell their story, and with reason. Suddenly, three days later, I see beaming eyes, I see people with smiles, and that is called hope. And that, that hope, to ensure that it will be maintained, will require, in the short term, ensuring that the kind of conference that we have today becomes an annual event for us to be able to measure the progress that we have each made back home and at the national level.

Another thing that touches me enormously is seeing that after three days, there are still experts who are with us; I recognize Dr. Zhang, Dr. Hatchette, Dr. Ogden and I am missing another one here, I forget your name. But this aspect of seeing them still with us after three days, listening to our discussions as they are doing, it gives enormous credibility to our approach over the last three days. So that's it.

Lise: Okay, thank you. How many people in the room don't understand English but didn't think to get-French, and didn't think to get a headset? Okay, very briefly summarizing then, he walked in Sunday night, and there was a lot of sadness, and all of a sudden there are a lot of bright eyes in the room here today, and it's a sign of hope. And to maintain that hope, let's make this an annual event and thank you to those experts who have stuck with the process, and are still in the room and listening after three days.

It is noon. I would like to end on that high note. Is that okay? All right. Thank you. We're going to lunch now. As Dan said this morning, back here, ready to reconvene at one. We're going to try to summarize all of this to report it back to the rest of the group this afternoon, while we're having lunch. Bon appétit, everyone. See you at 1:00.

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