Saturday 7 July 2012

LYME DISEASE in OTTAWA and across Ontario and Canada has been getting a lot of media attention lately. Now everybody thinks this good, right? Lyme is getting profile. Here's my big problem with that: the general public will assume that because it's all over the media that their doctors must be aware of it and will know how to treat it effectively if they or their children get bit and develop a bull's eye rash. NOT TRUE. Your doctor will not give you the amount and duration of antibiotics that you will need to effectively defeat the protozoa that you contract. Not only that, your doctor will have NO IDEA which protozoa you have contracted along with the borrelia that gives the bull's eye rash. Not only that, your doctor will likely tell you that the course of antibiotics that he/she has given you will 'take care of' the bug. All wrong. And you will pay for those mistakes with your health. Big time. So that's my problem with media attention.

Below is my letter to Elizabeth May, Green Party leader who is making Lyme one of her big causes lately. I tell her what I tell everybody: that until we understand that the CMA and doctors and infectious diseases specialists do not have the training and education to effectively clinically diagnose and treat Lyme Disease and its Co-Infections, and Chrnoic Lyme Disease, patients with Lyme Disease in the treatalbe phase will develop Chronic Lyme Disease and a lifetime of illness, perhaps death. Doctors are not up to speed. Conflict and medical politics confound the medical community and patients pay the price of the squabbling and controversy. Patients are fed up with the White Wall. It's time for the physicians in Canada to admit that they need the expertise of Lyme Specialists who have been treating the hundreds, no thousands, of Canadians who have sought care in the U.S.A. and other countries. I am calling on the CMA and physicians to get up to speed on this illness. They know, because several doctors have told me, that they do not know what to do, or who to listen to. They are having patients show up in their offices, and they don't know how to proceed. It's pretty simple, people. Just ask the Lyme patients who the Lyme specialists are, and get some training from these people. Physician education: that is what is needed.

Here's my letter to Ms. May:

Dear Ms. May… as a former senior manager in hospital administration in three Ottawa area hospitals, I have been appalled at the ignorance and intransigence concerning Lyme Disease and Chronic Lyme Disease of the medical community, health administrators and politicians. I call it the White Wall. I have a life sentence of Chronic Lyme Disease due to ineffective treatment in Ontario, and am in the care of a specialist in the USA. I’ve spent $40,000 on my health care in the past 3 years on a widow’s pension and supporting an adult child with a chronic illness. I have lobbied long and hard on this issue as health permits because my Lyme is not controlled: I have held meetings with the chief policy advisor to Deb Mathews, Minister of Health for Ontario, the Canadian Institute of Child Health, the Canadian Medical Association, two infectious diseases doctors and the Chief of Staff of the Ottawa Hospital, my MPP, my Ottawa city Councillor and the Ontario Ombudsman. And we are nowhere on this disease. I have set up a Lyme blog to warn people not to waste their time on Ontario/Canadian doctors because they do not know how to clinically diagnose, assess which co-infections people have, prescribe adequate meds based on the protozoa people have contracted, and a very treatable disease turns in to a life sentence of abject misery. This is unacceptable, but those of us who have been beating on the White Wall will continue because I get emails weekly from people seeking help. Dozens of them. And I tell them—don’t waste one second of your precious time in Canada—go to the U.S. and I give them names and phone numbers and they are seen immediately. I’ve been predicting the disaster and we are going to see a tidal wave of untreatable, chronically ill babies, children and adults—it’s already begun. I will not stand by and let the arrogance and indifference of every person I have met with, stop me from speaking the truth.
Getting the word out about Lyme on the part of the Green Party is laudable. But the problem is that Canadians have NO ONE in the medical community who knows how to treat it properly. Publicity only gives people the false impression that it is a known illness and their doctor will be able to treat them effectively. That is a grave disservice to the public. If you want to do something useful, speak the truth about who’s to blame. Not the patients who are seeking help. But the medical community which is not trained to diagnose the full spectrum of the disease and treat it effectively. It is a disgrace that they are not being held accountable for this malpractice, and that no one has the guts to call them on it. Except me.
Yours sincerely, Maureen Landry 613 744 8908 spiritquest@bell.net 29 Steek St, Ottawa, ON