Friday, July 19, 2013

Lymies, an Ontario doctor needs education ....

Lyme patients, friends and caregivers, please unite! You might have seen a TV excerpt about Lyme Disease last night (July 18) on CHCH out of Hamilton, Ontario.  Anita, another suffering Lymie (blog below) with currently no hope of getting treatment in Canada, gave an interview to Maria Hayes of CHCH.  They also interviewed Dr. Douglas Sider to get the Public Health Ontario perspective.  His email  address is below, and underneath that I'll quote the letter from Jim Wilson, president of the Canadian Lyme Disease Foundation in response to his statements.

Here are the EXACT WORDS HE USED. My friend Kim (see previous blog entry) used her PVR and made sure she wrote it down word for word.   His comments were the following:
"We are still learning lots about Lyme Disease. It's an infectious disease that we call emerging.  The validated blood tests we use here in Ontario are very effective in picking up the fact that you have the Lyme Disease diagnosis and the treatment is very effective."

There are also a number of physicians not so much in Ontario but across the border who are willing to subject people with my mind are questionable diagnosis of chronic Lyme Disease to prolonged antibiotic therapy and we've got good evidence of the risks versus lack of benefits."
Doug Sider
Medical Director
Communicable and Infectious Disease
+1 (647) 260-7313

Lyme friends and caregivers, please send this doctor an email and let's try to educate him with the facts and realities of living with long-term Lyme Disease here in Ontario and also in the rest of Canada. You know my story, about being dropped from treatment in Canada and being back in ER within three weeks. Treatment had to start all over again in the USA, since my body relapsed because treatment was halted too early. I'm not alone in that situation. 

Jim Wilson at the Brampton Lyme Walk
Jim Wilson's response to Dr. Sider: 

Dr. Sider, Your embarassing (for government)  interview regarding Lyme disease 

Dr. Sider,

You have just misinformed an unsuspecting Ontario population by going public on CHCH radio in Hamilton with these statements quoted below this paragraph, and as you see we require answers.

"We are still learning lots about Lyme Disease. It is an infectious disease that we call emerging.  The validated blood tests we use here in Ontario are very effective in picking up the fact that you have the Lyme Disease diagnosis and the treatment is very effective."

There are also a number of physicians not so much in Ontario but across the border who are willing to subject people with my mind are questionable diagnosis of chronic Lyme Disease to prolonged antibiotic therapy and we've got good evidence of the risks versus lack of benefits."

In your position representing the Ontario government as a taxpayer salaried Medical Director, Communicable and Infectious Disease, Ontario Agency for Health Protection and Promotion you have just intentionally misled the public regarding a potentially deadly illness.  You are not an uneducated man in the field of Lyme borreliosis or you would not have been put forward to address the issues. 

What was the validation process of your testing and more importantly, how are your tests able to detect the diversity of Lyme bacteria shown to occur in Canada when no other two-tiered serology employed in Canada or elsewhere in the world has that ability?  

Considering the potential harm this may do to many Ontarians who have just heard you, will you provide us immediately with supporting documentation in the form of peer-reviewed, evidence-based research that substantiates your confidence in the "validated" blood tests.  

Also, who "validated" the tests?  Where is this published, as it must be to form public health policy?  We don't want the written policy, we want the science validating your comments and tests.

Obviously a man in your position is aware that Health Canada published a warning last fall about Canadian tests not being able to detect the diversity of Borrelia known to occur in Canada, more and more of which are becoming known to be human pathogens.

Ontario tests are 100% incapable of detecting Borrelia miyamotoi, andersonii, hermsii, americana and many other strains/species that are far enough removed genetically from the strain used in your confirmatory western blot. Many of these are known to exist in Canada so under whose authority have you informed Ontarians that your tests, "are very effective in picking up the fact that you have the Lyme Disease diagnosis"?  Is this an official government of Ontario position?

What evidence do you have that all those thousands of Ontarians who have left the province to get proper diagnosis and treatment are at serious risk? You publicly stated they were at risk, the public requires the proof for informed consent decisions. 

Has even one patient in Ontario been given the evidence to make an informed decision on the risk to benefit ratio? Not at all that we are aware of.

How does your alleged risk of longer term antibiotic treatment compare to the many serious drugs prescribed by Ontario physicians to manage symptoms, one by one, drug by drug, as opposed to addressing the cause of their overall state of health?  How does the risk of longer term antibiotics stack up to Tylenol for example?

Why do you want to keep Ontarians who are chronically ill home in Ontario with no confirmed diagnosis, or another diagnosis due to a negative Ontario Lyme test, but medicated to the hilt with everything but something that will treat the cause of their illness?  Clearly your message signaled them not to leave.  It is not for the greater good, of the public and the related antibiotic resistance issue, while food farmers still use by far the largest amount of antimicrobials including antibiotics.  That certainly can't be an argument of yours?  The only benefit of keeping sick Ontarians at home appears to be in favour of the pharmaceutical industry... we simply state the appearance of what is before us.

What has the province done to measure the improvement of the patient's quality of life after longer term antibiotic intervention (please don't provide us old research that has long since been discredited because they defined the wrong patient groups by the very design of the study using the same limited serology), and, what has the province done to measure the reduction of the need for these out of province patients to be on 'daily symptom management pills for the rest of one's life' paid for by the Ontario taxpayer in an ever increasing amount? 

These public comments you made are very serious statements coming from a person who people expect honest, complete information from, so those statements require very solid evidence. 

In truth, it is our opinion that you have no idea how many or all those thousands of people tested for borreliosis in Ontario in the past 3 decades actually do have the disease because your tests have always been far too narrowly powered.  All research indicates we are correct.

We expect your reply shortly with the supporting evidence because the province through you has just made some very serious statements that will affect the health of Ontario residents.

By way of this letter we are asking the Ontario Premier to intervene by implementing a mechanism whereby Lyme borreliosis patients and their experts have an equal voice at any policy/guideline making level and that current policy and guidelines be immediately thrown out and reworked with our input.

CanLyme can provide expertise at any level.


Jim Wilson
Canadian Lyme Disease Foundation


Thursday, July 18, 2013

Meeting today with Member of Parliament, Kyle Seeback

Posting after a full month of hiatus from the blog, dealing with a heap of extra work, overtime, trying to learn new stuff, and working on a new international project. Thank you if you still stopped by the blog despite a lack of updates.

Today's heat wilted us again, added tornado warnings for an area around us, and had everyone seeking the coolness of air conditioning. I've got pictures taken inside the car, with temps registering 39 C (Monday) and 44 C (Tuesday). All our igloos have melted .... But we are promised relief in the next few days.

We had another form of relief as well, during a meeting this morning in Brampton, Ontario. I'm not at liberty to give all the details yet, but there will be follow-up very soon, and I believe that promise!

Thanks to City Councillor John Sanderson, who arranged for a meeting with MP Kyle Seeback, five of us met today to discuss the problems around Lyme Disease, lack of doctors to treat, patients being set adrift and not enough warnings put out for the general public. The bottom line is still that early diagnosis and treatment usually help to control the disease. If allowed to spread, the cost on all levels can be debilitating.

John Sanderson, me, Kyle Seeback, Rossana, and Kim
Mr. Seeback was very supportive. He knew a little about the plight of Lyme patients, but was suitably shocked and upset about the fact that we are not able to get treatment in Canada, that doctors are sent "on vacation" and that we have to seek help elsewhere. He agreed that we have to get the Federal government on board. He was also aware of the Private Member's Bill being brought forward by Elizabeth May to ask for a National Lyme Disease Strategy.

Rossana, who lost her husband to Lyme Disease and has been an outspoken advocate for years, talked about the new foundation she founded in his name and about what is being planned there. The hope is that the research facility will be open in 2015. [ If you missed that post, here is more, under the heading "New Foundation for Vector-Borne Diseases".]

Kim and I have both been sick with Lyme Disease for years, visited many doctors and specialists in Canada and found no help or correct diagnosis. Eventually we both had to seek treatment in the USA, pay out of pocket, spent years in treatment and still have to deal with the devastating results of the disease running rampant in our bodies for years before that. We are both now in remission. Rossana, Kim and I all and receive emails every week from people who are newly infected with nowhere to turn.

This will stop. But it might take Superman to help us!

Young Evan in his Superman shirt, admiring the Lyme Mobile
If you are in the area near the west end of Toronto, Mississauga, Etobicoke, Brampton, Caledon (Counties of Peel, Caledon and Halton Hills), please let me know if you still want a ticket for breakfast at Applebee's on Saturday morning! We have the place to ourselves between 8 am and 10 am. A ticket will buy you a short stack of pancakes with trimmings, bacon, coffee, tea or juice. For each ticket sold, 70% will be donated to the cause of Lyme Disease awareness. Email me through the Contact button above; there are still some tickets available.

Other stories to read:

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