Lyme Information Meeting in Ottawa

I am organizing a meeting of people about Lyme Disease in the Ottawa region. There is currently no support group and no organization of any kind in our area, that I am aware of, which provides information for people who have Lyme Disease or who suspect they have it, or who want to know where they can access reliable information on the diagnosis, testing, and treatment of the complicated illness of Lyme. So I have decided to offer an opportunity for people to get together, share information and try to get an idea of the needs of people who are either dealing with this illness or who wish to talk to others to try and determine whether they have it or not. And perhaps more importantly, where they can access reliable information from the experience of those of us who have been dealing with it for a number of years.

So I am putting this post out there and just email me back at lymeottawa@bell.net, and I will organize a meeting in the near future. The Lyme patient's journey is lonely and isolated, and both patients and their families feel frustrated because of the lack of support services, information and medical services in Ontario and across Canada. We need to come together to talk about our experiences and help one another on the road to recovery.

I have been personally advocating in the health system on the Lyme issue for the past 3 years. I have a hospital administration background and experience in dealing with patient care issues in the hospital setting, both acute and long-term care. The lack of awareness among physicians and health care professionals about Lyme is appalling. In my advocacy and awareness campaign I have personally met with my MPP, talked with the office of the Ontario Health Minister's chief policy advisor on Lyme, met with two infectious diseases specialists at the Ottawa Hospital as well as the Chief of Staff of the Ottawa Hospital, met with officials at the Canadian Medical Association, my Ottawa Councillor, the Office of the Ontario Ombudsman and others. All of these meetings have confirmed my suspicion that doctors (naturopathic and allopathic) are woefully lacking any skills in diagnosing and treating Lyme, the politicians are ducking the issue completely, hospital administrators are completely uninformed and are not taking decisive action, medical associations are uninformed and are not taking decisive action to address the multitude of medico-political issues this illness presents, the Ontario Ombudsman is trying to figure out where their responsiblity lies, and Lyme patients are left to deteriorate while everybody with any decision-making power fiddles. Oh, and everybody is afraid of the College of Physicians and Surgeons, especially the family docs that you keep going to for help. They are afraid to lose their licenses. So where does that leave you, dear reader? In a world of suffering caused by ignorance, indifference and arrogance.

Almost every week I receive a phone call from a Lyme sufferer, or mother whose child is ill, who has trekked from specialist to specialist and keeps being told they are not dealing with Lyme disease. People are desperate to find help for their loved ones, often children, whose health keeps deteriorating. They keep meeting with health care providers, often well-meaning, who are basically experimenting with their health. Because there are really so very few Lyme-literate doctors in the world who have the clinical expertise to properly diagnose and treat the complicated spectrum of infections that we so blithely call Lyme Disease, as if it were just one illness. Oh boy, what a mess.

So I am offering to organize a meeting so that we can share resources that have helped us, ideas, support and avenues for advocacy for those who are well enough, or angry enough, to want to change the status quo, which I characterize as the 'White Wall'. I'll get a space and then post the date, time and location on this website Please feel free to circulate this information through email or Facebook. I hope that you will come whether you need help or are just curious. Most of all, I sincerely hope that you are finding the medical services you need for your health. If you are struggling, contact Jim Wilson at www.canlyme.ca as his organization is an oasis of sanity in the confusing search for help for Lyme.

Take good care of you!  Love, Maureen.
lymeottawa@bell.net