This site is dedicated to the hundreds of Ontario and Canadian residents who have no access to effective health care in a timely manner to cure Lyme disease in its treatable phase, and especially to all those who then become sufferers of chronic Lyme disease for the rest of their lives.
An Unfolding Tragedy of Indifference
I have chronic lyme disease. I will post my story, which is typical of the thousands of you out there who are wondering if you have it, on my profile or in another post. For now, let me get to the heart of the issues in our province. Because Lyme season is upon us and the tide of people falling ill is growing. You need to know what to do if you get bitten. This is a very, very serious illness and you will have to advocate for yourself. Get ready for a fight.
I've been wanting to start this blog/website for months. Today is the day, prompted by a letter from a kind and concerned executive at the Canadian Institute of Child Health. That organization identified Lyme Disease and Chronic Lyme Disease as an "emerging" illness way back in the early 2000's. I had met with her last fall in my effort to meet with as many doctors, organizations and health care provider systems as possible to bring a wake-up call to the health system. I could not figure out why, in the great country of Canada, I could not find a specialist who was able to diagnose Chronic Lyme Disease. I could not figure out why, after being told that the 10-day course of anitbiotics I'd been given by my familiy doctor, I was deteriorating to the point of lying on my kitchen floor, unable to get up. I could not understand that with all the media attention, that no doctor or specialist could tell me if I had developed Chronic Lyme Disease. I couldn't understand why the "test" (the ELISA) came back negative, but I was extremely ill.
So I made it my business to find out what the heck was going on. I set out to interview infectious diseases doctors, hospital administrators, organizations who ostensibly provide "information" on Lyme disease, politicians who are responsible for overseeing health care for residents, Health Ministry people who develop policy to address health issues and "emerging" questions of public health; public health providers and national organizations such as the Canadian Medical Association. It took me a year or more, but what I discovered was shocking. In a nutshell---THEY DON'T KNOW. Some don't know or don't believe it exists; they don't know that the Elisa test is unreliable and the laughing stock of the Lyme community; they don't know how to treat someone with a lyme bite effectively to prevent the onset of chronic lyme disease; they don't know about co-infections that are transferred with the bite that usually go undiagnosed and untreated; they don't know that short-term antibiotics have failed with hundreds of lyme sufferers; they don't know that treating initial lyme with antibiotics for several months has a high success rate; they don't have the clinical skills and experience to diagnose lyme and its co-infections accurately; they don't know where and how to access testing at labs that have a higher success rate; they don't want to get involved in the politics of the two medical camps in Canada: one that says antibiotics should not be used on a long-term basis to treat lyme disease and one that says, but people are getting sicker so maybe the 10 day course is not enough and we need to look at other models of treatment like the ILADS protocols and the work of doctors who have been specializing in treating Lyme and Chronic Lyme for years now, and DO have the clinicial experience to diagnose and treat in a timely and effective manner. That's the fight. And while the doctors tiptoe around one another's sensibilities, people are phoning people like me to find out where to go to get help. And I tell them.
For the past 3 years, I have raised the alarm on this issue in letters, phone calls, and meetings with politicians, health policy advisors to the Minister of Health, lab directors, physicians, infectious diseases specialists, the chief of staff at the Ottawa Hospital, members of the Canadian Medical Association. These are key players in the lyme game. And everybody is in denial. What will change that is the growing tide of chronically ill men, women and children and as the numbers continue to mount, it will be too little too late for many of them.
Which brings me back to my friend Janice, and the Candian Institute for Child Health. We met several months ago and she wrote me to follow up and to tell me about recent media "coverage" on Lyme disease...Here is my reply:
Hi Janice …. How kind of you to think of me and thanks for taking the time to send me this info. Several people had told me about a few news items on Lyme in the past few days. The problem is still lethal… and my situation is typical of what is still happening—I went to my GP right away with my bull’s eye rash and he said, “no problem, we treat it with antibiotics and it will go away”. Except that it doesn’t because the GPs think that if they give a ‘superbomb” broad spectrum antibiotic for 10 days, that’s will take care of it. It does not. People need to be on antibiotics for at LEAST 3 to 6 months and that’s where we are missing the opportunity to cure people. Because they are taking their 10 days of antbx, they are getting sicker over the following months and boom, they’ve got chronic Lyme and it’s incurable. I saw a lady last week who’s had Lyme for more than 10 years, and she is very unwell. She’s been treating with alternative health. Doesn’t work. Last night a friend told me about her friend who recently got a bite, target rash and the doctor gave her 10 days of antbx. Won’t work. She will feel ‘better’ for a little while, and then she’ll start to get sick and by the time somebody figures it out, most likely the patient, NOT the doctor, it will be too late, depending on which co-infections she has. It makes me sick to my stomach to see what’s happening, just because doctors will not get educated. It’s criminal. I’ve interviewed both the infectious diseases specialists at the Ottawa Hospital: one of them told me that there is no Lyme in the Ottawa area, so I couldn’t possibly have it. The other told me he doesn’t know how to treat it, can't think of anybody in Canada who does, and why don’t I start a nice support group for myself since I already have a doctor in the States. I went to see the Chief Medical Officer of Health and he listened very carefully to what I was saying. He was annoyed with his ID doctors’ responses to me and said he would follow up with them. I told him about a telemedicine training in March, but I haven’t heard a thing from him since. Arrogance. So I keep sending everybody who comes to me to the States, and I weep for those who are too sick to get there, or don’t have the thousands needed to experiment looking for some relief. In my own case, I’m not well and am going to consult with a doctor in Texas. It’s my desperation move. Thousands more dollars on a widow's pension. Well, Janice, that’s what it is right now. This summer we’ll see an increase in the epidemic. All I can do is help the people that God sends my way. But people are not strong enough to advocate for themselves against the White Wall and that’s what worries and angers me.
An Ottawa pain specialist and GP recently told me they are getting more and more people coming into the clinic with bites and he doesn’t know what to do. So I prepared a package for him about the issues . Pretty soon you guys are going to have to take a stand against the current denial, and go against the current of the no-long-term-antibiotics docs (Infectious Diseases specialists) to keep your patients from dying’. Sooner would be better. Despite the rash of publicity, the horrifying fact remains that when people get bit the docs don’t know how to treat it effectively in its treatable phase and we are going to have more and more people with chronic lyme and death. The publicity gives the impression that “the system” knows how to deal with it. I just shake my head when I see those guys in interviews acting like they know what they are talking about.
Anyway, Janice …. So very sweet of you to take the time to write to me. Forgive the diatribe J. I continue to struggle uphill, am awake almost all night every night with the bugs raging in my body so that I cannot sleep, and working 3 or 4 days a week to pay for my medical bills. I do what I can to help others get to the resources they need. I wish I could do more. I do hope that you are well, and I’m sure that you have your plate more than full. I send you my best light for strength and courage to keep doing what you do to help children.... Hugs, Maureen.
And so, dear readers, on and on it goes.....
You can reach me at lymeottawa@bell.net or feel free to post on this site.
Blessings and Light,
Maureen Landry
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