The Conference to Develop a Federal Framework on Lyme Disease

I had all good intentions to write a blog post at least every couple of days. Unfortunately, life happens and those good intentions go slightly haywire.

I also had the intention of writing my blog so it was somewhat chronological from the date when I had my “ah ha it might be Lyme” moment to present day. I was doing a pretty good job with that but I want this particular blog entry to focus on my recent participation at the Conference to Develop a Federal Framework on Lyme Disease which was held in Ottawa, Ont., May 15-17, 2016.

As soon as I heard that there would be a conference where Lyme patients could be involved, I knew I had to be there – come hell or high water! The issue of Lyme and tick borne diseases has taken over my life and I needed to be a part of the move towards a solution!

The first part of the conference included a public forum during which those people wishing to speak about their personal experience with Lyme and tick borne diseases could do so. Because there were so many of us wishing to speak, we were given a period of five minutes in which to talk. When I heard about this opportunity I knew immediately that I wasn’t going to speak about my own story as it would be too emotionally draining. Therefore, I decided to provide my thoughts on issues that needed to be resolved.

The following were the issues I raised:

  • All Doctors need to be at least aware of the basics, such as – that the EM rash is a definitive sign of Lyme but not everyone presents with an EM rash; that the ELISA has sensitivity and specificity limitations and a negative result does not necessarily mean you don’t have Lyme; that co-infections are becoming the norm; and that disease carrying ticks can now be found just about everywhere.
  • Properly trained Doctors are required throughout the country that can clinically diagnose and treat ALL stages of Lyme and tick borne diseases.
  • Lyme is not just a bull’s eye rash and flu like symptoms. It can be so much more!
  • More information needs to be available about co-infections. In Nova Scotia, several possible co-infections have now been found in ticks. Knowledge about these is limited.
  • Doctors should be allowed to treat their patients how they see fit. In other words, they should be allowed to follow either the IDSA or ILADS guidelines and they should be allowed to treat until symptoms are eradicated.
  • More education is required in Medical Schools regarding tick borne diseases as they are a worldwide problem.
  • The quicker tick borne diseases are diagnosed the better so GP’s need to stop separating symptoms and look at what could be causing them all, rather than sending a patient to various Specialists for each individual symptom. This delays, and sometimes prevents, a proper diagnosis and treatment. This delay obviously impacts the patient’s health, but can also end up costing the government a considerable amount of money which could be better spent elsewhere!

The conference was a wonderful opportunity to meet people from all over the country that I have been chatting with on-line and certainly made it hit home what dealing with this illness would have been like before social media! Thinking that you were alone. Perhaps feeling that you might actually be going crazy as the variety of symptoms just didn’t make sense and nothing was coming up on tests.

Until you can speak to people going through the same, or similar, situation, you really start to question your sanity – or at least I did. Unfortunately, there are many people not utilizing social media and we need to recognize this fact and ensure that information is disseminated in other ways and that help is available through other resources. People should not be dealing with tick borne diseases on their own!

From Sunday night to Tuesday afternoon many emotions passed through me. Sunday night was one of sadness and despair. The number of speakers and their stories was almost too much to handle. One of the speakers ended the evening by being taken out of the conference via an ambulance. The trip to the conference and the emotional and physical toll that it took on many people in attendance was visible. Yet everyone there would not have wanted to be anywhere else. They all wanted to do their part to ensure others did not have to go through what we have gone through.

On Monday there were several speakers. There were wonderful speakers such as the Honourable Jane Philpott, Minister of Health; Elizabeth May, Green Party of Canada (and the reason we were all able to be at a conference such as this!); Jim Wilson, Director, Canadian Lyme Disease Foundation (CanLyme). There were also some not so wonderful speakers such as Dr. David Patrick, Professor and Director, School of Population and Public Health, University of British Columbia; Dr. William Bowie, Professor, Division of Infectious Diseases, Faculty of Medicine, University of British Columbia and Dr. Todd Hatchette, Chief, Division of Microbiology, Department of Pathology and Laboratory Medicine, Nova Scotia Health Authority Professor, Department of Pathology, Dalhousie University.

I deliberately left out Dr. Daniel Gregson, Past-President, Association of Medical Microbiology and Infectious Disease Canada as I didn’t get a good handle on him. He waffled a bit on both sides of good and not so good speaker. However, he leaned more towards a not so great speaker – in my humble opinion.

When I speak of wonderful and not so wonderful speakers I am commenting on whether I felt that they had a handle on Lyme and tick borne diseases, if they felt that they were a steadily growing issue in the country and whether they thought that patient advocates were worthy of listening to and learning from. I don’t mean whether they made sense, or were good at public speaking, although not everyone was, as that is a personal perception for many.

There were also lots of speakers I did not get a chance to hear because of the breakout sessions but look forward to hearing all the speakers once the videos are available on-line. There was a great mix of speakers, many of which I had already heard of and a couple that I hadn’t. It was a very well organized and coordinated event and the three Tri-Chairs should be happy with how it all came together.

There were several speakers from outside of Canada and they were all very informative. I found Dr. Brian Fallon’s presentation very interesting and informative. Dr. Fallon is the Professor of Psychiatry, Director, Lyme and Tick-Borne Diseases Research Center, Columbia University Medical Center as well as Director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine, New York State Psychiatric Institute. Dr. Ying Zhang, Department of Molecular Microbiology and Immunology, Bloomberg School of Public Health, Johns Hopkins University was also very interesting. To be able to have speakers such as these two gentleman present at this conference was amazing.

However, the star of the conference, in my opinion, was Dr. Ralph Hawkins! He is the Clinical Associate Professor of Medicine, University of Calgary, South Health Campus Hospital Site and Lead for Division of General Internal Medicine. Dr. Hawkins’ presentation was “Lyme Disease from the Perspective of a General Physician in Active Clinical Practice”. As far as I know, he is the only MD presently actively treating Lyme patients in Canada. He made sure that he asked questions of other speakers that showed, to me anyway, that some of the other speakers may not be as up-to-date on Lyme and tick borne diseases as they think (or thought) they are! He did an excellent job!

On Tuesday afternoon you could feel the hope. You could see that many folks thought that the conference may possibly result in change. It will take some time to see if change does take place in the way that surveillance is undertaken, the way education and awareness is undertaken, and whether guidelines and best practices will be changed to provide a more timely diagnosis and treatment. Certainly Dr. Gregory Taylor, Chief Public Health Officer, Public Health Agency of Canada, has been talking the talk during the conference and during subsequent interviews. Now we have to ensure that he walks the walk!

It is anticipated that videos from the conference will be available within a couple of weeks. There were also independent videos being taken and some of these are already available on-line. CanLyme also had a videographer in attendance and that will also hopefully be on-line as quickly as possible. Everyone should take the opportunity to watch the conference when it is available. It was quite informative and a little bit eye opening for all in attendance!

If anyone is reading this that has Lyme and/or tick borne diseases, and you haven’t written your local newspaper or your local politician and you have not spoken about everything that you have gone through, please consider doing so. The more people that speak up the better. It’s a numbers game and we need to show the powers that be that we have the numbers!

Let yourself be heard!