lymeottawa
A site dedicated to people seeking information on the diagnosis, testing and treatment for Lyme Disease and Chronic Lyme Disease
Why You Cannot Find Help in Canada
Welcome to my OttawaLyme website from Ottawa, Ontario Canada. If you have found your way here, you are probably searching for help to diagnose, test and treat suspected Lyme Disease or Chronic Lyme Disease. I offer my experience and some resources so that you can make informed decisions to get the help you need.
I have had Chronic Lyme Disease (sometimes called Late Stage Lyme Disease) since I was bitten by a tick in 2007 and developed a classic bulls-eye rash. My Ottawa physician treated me with several days of full-spectrum antibiotics and told me I would be fine. When my health deteriorated, he felt it must be something else because he believed the Lyme issue was resolved with the antibiotics he had given me. For the next TWO YEARS he referred me to specialist after specialist in the search for the answer to my growing list of symptoms: profound fatigue, sweats, chills, tinnitus, ear buzzing, balance problems, nausea and vomiting, vertigo, flushes, numbness and tingling in arms and legs, insomnia, etc etc etc. This is a partial list. To each specialist I put the question: could these problems be Lyme Disease. Each one replied that it was not. And I believed them because I thought they were ruling out Lyme because they were experienced with it. I slowly realized that they didn't know a damn thing about Lyme Disease, and that they were cavalierly dismissing the idea out of ignorance, and not clinical expertise.
During this period I was nursing my late husband who was dying of a brain tumour. That was added fuel for a condescending diagnosis of "stress". I was researching the Lyme Disease controversy on the net, and started inquiries with Lyme organizations to find a doctor with expertise in Lyme. To my horror I began to realize that there are none in Canada, and that any who had the audacity to treat Lyme were being sanctioned by the Colleges of Physicians and Surgeons. It seemed that the USA was the only option, so I wrote to Canlyme, The Canadian Lyme Foundation, to get the name of a Lyme specialist physician in the USA. After 2 years of sleeplessness due to sweats and chills and numbing neuropathy, I decided to go to the USA. By this time, my health had deteriorated to the point that I was falling down on my kitchen floor because of weakness in my legs, and lying there paralyzed for about half an hour. I made the call to a US Lyme specialist and was lucky enough to get an appointment the following week.
That was 2009, and the beginning of a very, very long journey towards recovering the many losses in my health. I could no longer work, and for the next year I was seriously ill in bed. The financial cost of medication and health care to treat this complex illness was crushing and when I could crawl out of bed after a year, I would work a day here and there to make money to pay for my health care. I have spent more than $72, 000 over the past five years for health care. It is inhuman to have to work when seriously ill, but I have been doing that for years now. My family physician at the time, chastened by his misdiagnosis, was very supportive of my treatment decisions. He had another Ottawa woman in his practice with the same story as me, who also had to go to the USA for Lyme treatment, so he was learning from his mistakes. He has since closed his practice. I have experienced only derision and condescending arrogance from the Ottawa health care providers that I must deal with currently.
When I could stand up and function in 2010, I decided to get to the bottom of Lyme medical politics and find out if local infectious diseases experts knew anything about Lyme disease. I saw two of them and they did not. An HIV specialist did not. Emergency doctors I saw did not. Specialists in other medical specialties did not: ear, nose throat; endocrinologist; allergy/immune system; dermatologist. Oh, they've heard of it all right. But after you scratch the surface of their knowledge, it all became clear: they have no idea how to diagnose or treat Lyme Disease effectively. They all know you have to throw some antibiotics at it, but the CDC guidelines of 8 to 10 days or so don't cut it, folks. Doctors in Canada do not have enough expertise and experience to be able to diagnose Lyme from the symptoms you present. The Ontario standard ELISA test is known to be seriously inaccurate (see Health Canada's Adverse Reaction Newsletter of October 2012 for that one). And they won't let you have a Western Blot (somewhat more accurate) unless your ELISA is positive, which it won't be. And even if they do diagnose your Lyme, they will treat you with a useless few days of antibiotics. Lyme specialists counsel at least 6 to 8 weeks of doxycycline for new cases and it MUST be treated early within a short time of contracting the illness. If not, people develop Chronic Lyme Disease. And that, my friends, is a very bad illness to have. It can be life-threatening. It can be extremely treatment resistant, and the Lyme blogs are full of horrible stories of people who have been unable to recover their health fully despite years of treatment. Like me.
If you are still reading this, then please know that it is possible for people to regain health losses and improve even with Chronic Lyme. But you have to get:
1, An accurate diagnosis
2. Effective and accurate testing
3. Effective treatment with a Lyme-literate physician with experience in treating complex Lyme cases
Lots of people claim they treat Lyme, both medical doctors and naturopaths. It's a nightmare trying to figure out who is telling the truth, who is really competent, and how much of the claims are just marketing. You have to talk to people who have received effective treatment to get a referral to a competent Lyme physician. Only in America.
I am still in treatment for my Chronic Lyme Disease. I have been on many combinations of antibiotics, naturopathic medicines and supplements. My Lyme physician in the USA uncovered a couple of other conditions that I have which are slowing my recovery. It's a very complex case. Yours, hopefully, will be more straightforward.
Many people do not want to take antibiotics. Here's the deal: you don't take a knife to a gun fight. My Lyme physician told me, when I asked her that question, that she uses strong antibiotics because people who don't take them don't get better. That was good enough for me. And she's also a qualified naturopath, so I knew she was aware of all of the 'natural' treatments for Lyme as well, and had made a considered decision based on both sides of that debate.
The reason you cannot get health care in Canada is that the Ontario College of Physicians and Surgeons does not believe that Chronic Lyme Disease exists. Neither does Public Health Canada. Or the Infectious Diseases Society of America which sets policy for infectious diseases doctors in North America. The College has taken away the medical licence of at least two Canadian physicians who have had the audacity to treat Lyme with antibiotics or treatments beyond the CDC guidelines. That's why you have to go to the USA. Doctors there are facing sanctions in some States, and patients and advocates are fighting this trend by enacting legislation to prevent the Colleges from taking doctors' licences away. Some States, like New York State, are still tolerating doctors who are treating Lyme according to ILADS guidelines, the international guidelines that recognize the complexity of Lyme, its co-infections, and the success of doctors who are using treatment protocols and effectively getting good results. You will find many of these doctors on the internet--doctors who employ best practices and are really providing wonderful care for Lyme patients guided by research and science. I will post a list of resources in a separate post on this page.
Bottom line?? You HAVE to go to the USA for treatment of Lyme Disease and Chronic Lyme Disease. You must find a doctor through other Lyme patients or Canlyme. You must pay for your health care yourself (consider crowdfunding on Facebook). And you must follow your own intuition on what is best for you.
If you would like to speak with me about your situation, please don't hesitate to email me or give me a call. Email: spiritquest @bell.net or call 613 744 8908 (Ottawa, Canada). Every week I speak with someone afflicted with Lyme and I help to get the care they need for this serious illness. Lyme is rampant in North America. Help is hard to find, but it is out there! Get going!
Sincerely, Maureen.
Ottawa, February 2014
I have had Chronic Lyme Disease (sometimes called Late Stage Lyme Disease) since I was bitten by a tick in 2007 and developed a classic bulls-eye rash. My Ottawa physician treated me with several days of full-spectrum antibiotics and told me I would be fine. When my health deteriorated, he felt it must be something else because he believed the Lyme issue was resolved with the antibiotics he had given me. For the next TWO YEARS he referred me to specialist after specialist in the search for the answer to my growing list of symptoms: profound fatigue, sweats, chills, tinnitus, ear buzzing, balance problems, nausea and vomiting, vertigo, flushes, numbness and tingling in arms and legs, insomnia, etc etc etc. This is a partial list. To each specialist I put the question: could these problems be Lyme Disease. Each one replied that it was not. And I believed them because I thought they were ruling out Lyme because they were experienced with it. I slowly realized that they didn't know a damn thing about Lyme Disease, and that they were cavalierly dismissing the idea out of ignorance, and not clinical expertise.
During this period I was nursing my late husband who was dying of a brain tumour. That was added fuel for a condescending diagnosis of "stress". I was researching the Lyme Disease controversy on the net, and started inquiries with Lyme organizations to find a doctor with expertise in Lyme. To my horror I began to realize that there are none in Canada, and that any who had the audacity to treat Lyme were being sanctioned by the Colleges of Physicians and Surgeons. It seemed that the USA was the only option, so I wrote to Canlyme, The Canadian Lyme Foundation, to get the name of a Lyme specialist physician in the USA. After 2 years of sleeplessness due to sweats and chills and numbing neuropathy, I decided to go to the USA. By this time, my health had deteriorated to the point that I was falling down on my kitchen floor because of weakness in my legs, and lying there paralyzed for about half an hour. I made the call to a US Lyme specialist and was lucky enough to get an appointment the following week.
That was 2009, and the beginning of a very, very long journey towards recovering the many losses in my health. I could no longer work, and for the next year I was seriously ill in bed. The financial cost of medication and health care to treat this complex illness was crushing and when I could crawl out of bed after a year, I would work a day here and there to make money to pay for my health care. I have spent more than $72, 000 over the past five years for health care. It is inhuman to have to work when seriously ill, but I have been doing that for years now. My family physician at the time, chastened by his misdiagnosis, was very supportive of my treatment decisions. He had another Ottawa woman in his practice with the same story as me, who also had to go to the USA for Lyme treatment, so he was learning from his mistakes. He has since closed his practice. I have experienced only derision and condescending arrogance from the Ottawa health care providers that I must deal with currently.
When I could stand up and function in 2010, I decided to get to the bottom of Lyme medical politics and find out if local infectious diseases experts knew anything about Lyme disease. I saw two of them and they did not. An HIV specialist did not. Emergency doctors I saw did not. Specialists in other medical specialties did not: ear, nose throat; endocrinologist; allergy/immune system; dermatologist. Oh, they've heard of it all right. But after you scratch the surface of their knowledge, it all became clear: they have no idea how to diagnose or treat Lyme Disease effectively. They all know you have to throw some antibiotics at it, but the CDC guidelines of 8 to 10 days or so don't cut it, folks. Doctors in Canada do not have enough expertise and experience to be able to diagnose Lyme from the symptoms you present. The Ontario standard ELISA test is known to be seriously inaccurate (see Health Canada's Adverse Reaction Newsletter of October 2012 for that one). And they won't let you have a Western Blot (somewhat more accurate) unless your ELISA is positive, which it won't be. And even if they do diagnose your Lyme, they will treat you with a useless few days of antibiotics. Lyme specialists counsel at least 6 to 8 weeks of doxycycline for new cases and it MUST be treated early within a short time of contracting the illness. If not, people develop Chronic Lyme Disease. And that, my friends, is a very bad illness to have. It can be life-threatening. It can be extremely treatment resistant, and the Lyme blogs are full of horrible stories of people who have been unable to recover their health fully despite years of treatment. Like me.
If you are still reading this, then please know that it is possible for people to regain health losses and improve even with Chronic Lyme. But you have to get:
1, An accurate diagnosis
2. Effective and accurate testing
3. Effective treatment with a Lyme-literate physician with experience in treating complex Lyme cases
Lots of people claim they treat Lyme, both medical doctors and naturopaths. It's a nightmare trying to figure out who is telling the truth, who is really competent, and how much of the claims are just marketing. You have to talk to people who have received effective treatment to get a referral to a competent Lyme physician. Only in America.
I am still in treatment for my Chronic Lyme Disease. I have been on many combinations of antibiotics, naturopathic medicines and supplements. My Lyme physician in the USA uncovered a couple of other conditions that I have which are slowing my recovery. It's a very complex case. Yours, hopefully, will be more straightforward.
Many people do not want to take antibiotics. Here's the deal: you don't take a knife to a gun fight. My Lyme physician told me, when I asked her that question, that she uses strong antibiotics because people who don't take them don't get better. That was good enough for me. And she's also a qualified naturopath, so I knew she was aware of all of the 'natural' treatments for Lyme as well, and had made a considered decision based on both sides of that debate.
The reason you cannot get health care in Canada is that the Ontario College of Physicians and Surgeons does not believe that Chronic Lyme Disease exists. Neither does Public Health Canada. Or the Infectious Diseases Society of America which sets policy for infectious diseases doctors in North America. The College has taken away the medical licence of at least two Canadian physicians who have had the audacity to treat Lyme with antibiotics or treatments beyond the CDC guidelines. That's why you have to go to the USA. Doctors there are facing sanctions in some States, and patients and advocates are fighting this trend by enacting legislation to prevent the Colleges from taking doctors' licences away. Some States, like New York State, are still tolerating doctors who are treating Lyme according to ILADS guidelines, the international guidelines that recognize the complexity of Lyme, its co-infections, and the success of doctors who are using treatment protocols and effectively getting good results. You will find many of these doctors on the internet--doctors who employ best practices and are really providing wonderful care for Lyme patients guided by research and science. I will post a list of resources in a separate post on this page.
Bottom line?? You HAVE to go to the USA for treatment of Lyme Disease and Chronic Lyme Disease. You must find a doctor through other Lyme patients or Canlyme. You must pay for your health care yourself (consider crowdfunding on Facebook). And you must follow your own intuition on what is best for you.
If you would like to speak with me about your situation, please don't hesitate to email me or give me a call. Email: spiritquest @bell.net or call 613 744 8908 (Ottawa, Canada). Every week I speak with someone afflicted with Lyme and I help to get the care they need for this serious illness. Lyme is rampant in North America. Help is hard to find, but it is out there! Get going!
Sincerely, Maureen.
Ottawa, February 2014
FEDS AND ONTARIO TALK LYME
FEDS AND ONTARIO LEGISLATURES TIPTOE INTO LYME-INFESTED WATERS
This year, 2014, two initiatives at the legislative level have moved the discussion of barriers to health care forward, if only glacially. Elizabeth May (Green Party) introduced a bill to have a discussion about Lyme and related issues in the federal government. The motion passed both houses and interviews are being held with certain, selected people. Here's the problem, Health Canada is overseeing this process and while they are meeting with some Lyme advocacy groups, individuals like me and you who are struggling with no access to care in this country are being ignored by this process. We have no access to these people to be able to bring our concerns and experiences to the table. You can bet that the docs will have all kinds of access to these people. So the discussion will not be well-rounded and the very people who are affected are left out.
Ontario Legislature: same story. So far a bill for a "discussion" has been approved by both houses. It was introduced by MPP Mike Mantha (NDP). A Standing Committee is supposed to be set up to hear presentations, but until I hear who they are letting in, and more importantly, who they are keeping out, it will be an empty exercise. If they do it right, it will be a discussion, but because the bill has no legislative teeth, Lyme patients can expect to see a lot of rhetoric and no guarantee of health care services that more and more Ontarians are requesting every day. I have had three inquiries in the past week. This month my USA health care bill was $6,000.00. Yes, you read that right. But to hear the politicians tell it, we don't have a problem and nobody sees what all the fuss is about. After all, surely Canadian and Ontario physicians must know how to diagnose and treat Lyme. Hahahahaha. Stay tuned.
Posted on December 7, 2014.
This year, 2014, two initiatives at the legislative level have moved the discussion of barriers to health care forward, if only glacially. Elizabeth May (Green Party) introduced a bill to have a discussion about Lyme and related issues in the federal government. The motion passed both houses and interviews are being held with certain, selected people. Here's the problem, Health Canada is overseeing this process and while they are meeting with some Lyme advocacy groups, individuals like me and you who are struggling with no access to care in this country are being ignored by this process. We have no access to these people to be able to bring our concerns and experiences to the table. You can bet that the docs will have all kinds of access to these people. So the discussion will not be well-rounded and the very people who are affected are left out.
Ontario Legislature: same story. So far a bill for a "discussion" has been approved by both houses. It was introduced by MPP Mike Mantha (NDP). A Standing Committee is supposed to be set up to hear presentations, but until I hear who they are letting in, and more importantly, who they are keeping out, it will be an empty exercise. If they do it right, it will be a discussion, but because the bill has no legislative teeth, Lyme patients can expect to see a lot of rhetoric and no guarantee of health care services that more and more Ontarians are requesting every day. I have had three inquiries in the past week. This month my USA health care bill was $6,000.00. Yes, you read that right. But to hear the politicians tell it, we don't have a problem and nobody sees what all the fuss is about. After all, surely Canadian and Ontario physicians must know how to diagnose and treat Lyme. Hahahahaha. Stay tuned.
Posted on December 7, 2014.