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 

TREATMENT DOSAGE for BULL'S EYE

During my summer 2012 visit to my Lyme Specialist in the USA, I asked what the most up-to-date thinking is among Lyme literate doctors about treatment for an initial contact with "Lyme disease". What antibiotic should be prescribed and for how long, if someone has a bull's eye rash or thinks they have contracted "Lyme disease". The answer is: Doxycycline for at least 4 weeks. What is happening is that Ontario patients who have a bull's eye rash are going to their doctor's office, and they are often being prescribed the usual 10 day course of some antibiotic. It's not enough. Often, the patient will ask for a longer course of antibiotic (because they've done some research on the internet) and they will be refused. So I am told that patients then often have to trek around to various clinics until they amass 4 weeks of antibiotic. I am using the word "often" deliberately, folks. Because I am relating anecdotal information, and this kind of medical run-around is happening to people. Sadly. Because most doctors in Ontario still have not done their homework on Lyme disease and the complicated, multi-faceted illness that they are dealing with. They are not up to speed with what they need to prescribe, and for what length of time in order to effectively eradicate Lyme in its initial phase. So patients are getting their needs met one way or another by working the system, and good for them.

I have had "Lyme disease" for five years and I have chronic Lyme disease because my Ontario physician did not treat my illness effectively.  I have several infections in addition to borrelia, some proven, some suspected, all ugly--and they cause havoc to my body and my life and a lot of suffering. I write this blog because the last five years of unspeakable suffering was entirely preventable. I repeat, entirely preventable. Patients have to take charge of their medical care and decisions and the internet has been a boon to Lyme patients to find the right people to treat them. People are shocked that Canadian physicians are lacking information and expertise in dealing with Lyme, but that is the case.

Get educated, and then get going. If you want more information--reliable, credible information, go to www.canlyme.com and start reading. Then get yourself to a doctor who has a track record in diagnosing and treating the very complicated illness that we label "Lyme disease". You will be very wise to go to the United States of America to a Lyme-literate doctor. If you need the name of a doctor, just email me and I will be happy to provide the name of a physician who will be able to tell you if you have Lyme or not, how many infections you likely have, identify them, and then treat them. If you get to one soon enough, you will catch your Lyme in its treatable phase and you will get well. If you wait, doubt, second-guess and dawdle, you will regret that decision.

Good luck, and get better!
Maureen

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

LYME DISEASE and CHRONIC LYME DISEASE OTTAWA

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

spiritquest@bell.net

www.spiritquestblog.blogspot.com