Why we need a national Lyme disease strategy

On Monday, October 7th, 2013 in Articles by Elizabeth
Share

I know a health policy briefing should touch on all areas of health policy. We have critical issues ahead as we work to protect universal access to top-notch health care, reduce wait-times and drug costs, and meet the growing challenges of an aging population. The deficits in our mental health programs alone could occupy the House of Commons for the fall session.

That I write now about Lyme disease is because it is timely and urgent. One of the first private member’s bills slated for second reading in the next session will be Bill C-442. It calls for a National Lyme Disease strategy, and, while I am the author of the bill, I hope it will not be seen as “my bill,” but rather as a bill every Member of Parliament, regardless of party affiliation, can champion.

Related: Support Bill C-442. Sign the petition!

At least for those MPs representing regions of Southern Canada, we hear from constituents suffering from Lyme disease all too frequently. We know that Lyme disease is a spreading threat and that one tick bite can lead to potentially devastating illness. It is hard to diagnose. Some conventional testing methods miss the diagnosis. Most Canadians are unaware of the risk of exposure to a tick bite.

Others are aware of the risk, but rely on the conventional wisdom that the presence or absence of the “bull’s eye rash” is a reliable way to know if the bite was dangerous. It is not. Diagnosis is difficult. Many are unaware that the tick bite could lead to permanent disability if not diagnosed correctly and treated promptly. We need to do more, recognizing that the delivery of health programs is a provincial matter.

Bill C-442 calls for the federal minister of Health to convene a conference to gather together “best practices” across the provincial and territorial jurisdictional lines to improve three areas of Lyme disease policy for all of Canada. It calls for better programs for public awareness, improving prevention of Lyme disease. Secondly it will allow the sharing of approaches for improved diagnosis and treatment, and, lastly, it identifies the need for a national strategy to find a cure.

Former Minister of Health, Leona Aglukkaq, stated the “Government of Canada recognizes that Lyme disease is a serious infectious disease in Canada.” She confirmed that the government “is committed to minimizing the public health risk of this disease….”

Canada is not alone in confronting the growing threat of Lyme disease. In August, the Centers for Disease Control and Prevention in Atlanta, Georgia made a startling announcement.

It raised its estimate of Lyme disease diagnoses annually from 30,000 to 300,000. Chief of epidemiology and surveillance of the CDC Lyme Disease program, Dr. Paul Mead, stated “we know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater…this new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States, and clearly highlights the urgent need for prevention.”

We cannot assume that the U.S. experience holds true in Canada, but it is certainly the case that I hear from health practitioners across Canada expressing the concern that the number of Lyme patients far exceed the official reports.

It breaks my heart to see families struggle with the costs of going to the U.S. to get treatment for family members with Lyme disease. Even worse is hearing from people suffering from Lyme who cannot afford treatment in the U.S. and are unable to find care in Canada. Many doctors are working hard, as are many provinces. Surely sharing best practices to decrease the extent of Lyme, the reliability of diagnosis and the research work toward improving treatment regimes is in all of our interests.

Originally printed in the Hill Times.

Print this page

  • D Vandeleur

    Thankyou Elizabeth May for warning us again about this disease – denied for many years. When I was bitten by a tick some years ago I had to REALLY INSIST (& he was very annoyed) that my doctor send away a sample for true analysis – luckily it was not Lyme’s. And there have been many suggestions that other ‘incurable’ diseases have been mistakenly diagnosed & analysis of the post-mortem tissues have indicated similar bacteria? found in Lyme’s tissues. Perhaps those victims’ lives could have been saved by a Lyme’s diagnosis, treated immediately,

    • Tonyr Omabarian

      So the doctor was right.

      • Jules

        The Dr. may have been right in this case but only by 50/50 chance. The fact is that there is a lot less diagnostic testing being done than there out to be. Think how many times you’ve been seen by a doctor due to cold or flu symptoms and received a prescription for antibiotics. Did the doctor do a swab to determine the type of bacteria your dealing with before prescribing the correct antibiotic? Doctors in Canada seem very reluctant to have diagnostic testing done and that means in order to have a true diagnosis of what’s happening in your body, you need to stand firm when asking for testing to be done.

        • D Vandeleur

          Thanks Jules …. the fact is that at that time (1970s) in our town, Dr. Kindree’s daughter had been confined to a wheel-chair by Lyme’s Disease caused by a tick bite. He did a lot of research on it, and was successful in having her treated for it & today she is free of it. I had heard of the denial by many doctors because sometimes the symptoms take a long time to show up. I’ve heard that researchers who have done post-mortem studies of Alzheimer’s & some other diseases’ brain tissue has indicated similarities to those of Lyme’s victims. Perhaps if Lyme’s had been taken seriously & tested for it, early treatment might have avoided the terrible consequences to victims’ lives.

          • lauriej1

            Tick bites that spread Lyme are almost always characterized by a red target-like ring and joint ache. If you show either or both of these signs a rapid response with antibiotics will most likely eliminate Lyme very quickly. If you wait you’re in big trouble down the line.
            People need to recognize and acknowledge that they may have been bitten by a tick and act on it.

      • lauriej1

        The other possibility is that the test was false-negative.

        • D Vandeleur

          no, thank goodness it was not Lymes & I have no Chronic Lyme’s symptoms & I am over 80!

          • lauriej1

            Yes, thank goodness. From the medical literature there are a lot of false negatives from the test which certainly doesn’t help patients, some of whom are told that their symptoms are psychosomatic.

    • ramgbs

      we must protect and find a way to make sure these people have funds to support them if needed Bob Martin

  • Carrie Pohl

    I have had Lyme Disease since August 2012 when I bit by a tick. Luckily, my husband was able to support the costs needed to get testing and antibiotic treatment from the States, since I could not find a doctor here to help me. Unfortunately, my condition has declined greatly. Now I fear that I may never recover. I am 22 years old and I can barely leave my bed.

    There needs to be way more awareness for Lyme Disease. People are dying from this. Canada needs to start recognizing chronic Lyme.

    • Paul Neuman

      Have you heard of a medication called LDN ( low dose naltrexone )?

      Some people swear that it works for Lyme. Google it and do your research on it…could possibly help.

      • Martin Spacek

        Which people, exactly, are those that swear by LDN? Are they objective in their swearing?

        https://en.wikipedia.org/wiki/Low-dose_naltrexone

        It seems that LDN is effectively an opiod agonist (at higher doses, naltrexone is apparently an opiod antagonist). This means that at low doses, it’s a bit like opium, heroin, and morphine in that it’s an analgesic: a pain killer. It reduces pain in general, to just about anything and everything. Getting anyone’s hopes up that some off-label drug will cure their (acute? chronic?) Lyme is irresponsible, even cruel.

        Some people swear by snake oil too.

        • Paul Neuman

          obviously, by your remark you have no idea how LDN works. Do some research besides Wikipedia. A quick search will find many people who have benefitted from it’s effects.

          • Martin Spacek

            Gosh, you’re the 3rd person or so to simultaneously pooh-pooh Wikipedia, urge me to do a search for patient testimonials, and fail to provide me with a reference to a peer-reviewed scientific article on the subject. Perhaps you have no idea how genuine science works?

          • Janice Marlow

            Are you serious Martin? Wikipedia is genuine science lmao?? Wikipedia, where anyone can change the information just by adding it to the page, does not constitute genuine science, not even close Martin.
            You might want to consider checking into some of the peer-reviewed data yourself, especially if you are getting your information from Wikipedia lol. Just because you read a few articles on Wikipedia and just because you have read a few articles written by the IDSA does not make you a specialist in the field. Seriously, Martin, get over yourself!

          • Martin Spacek

            You don’t seem to understand the principle of Wikipedia: the fact that anyone can edit is a good thing. But if you want your edit to last, it needs to cite published references. I suppose you consider open-source software to be worthless as well. You also seem to lack reading comprehension. I’m not a specialist, and Wikipedia isn’t science, but it can be a good way to get a broad overview of a field.

            I still find it quite amazing that everyone here continues to harp on wiki, instead of doing something about the perceived inadequacies of it. It’s says one of two things: either you’re all too lazy to improve the wiki article, or the article is already accurate, you know it, and know that any edits you make will be undone because you won’t be able to substantiate them.

          • sunny77753

            yep knew it .. a wikihead … cannot do anything in his world on his own .. must be validated by wiki as unable to think on his own … just another sheeple

          • Jane

            Healthy skepticism is great, but it is foolish to be completely resistant to new information simply because it isn’t advocated by the medical community (the same medical community that has so abysmally failed Lyme patients for the last 50 years). Low dose naltrexone works by blockading opiate receptors for 2-4 hours at night. The body responds to this short-term blockade by upregulating the production of endorpins and enkephalins. The upregulation of natural opioids shifts the immune response from Th-1 to Th-2, which improves our ability to fight Lyme disease, as well as a variety of cancers and autoimmune diseases (I’m a veterinarian, with Lyme, and it has helped me tremendously). The science behind LDN is sound and the small trials that have been conducted for various autoimmune conditions and cancers have been incredibly positive. Unfortunately, Naltrexone is long off patent so the pharmaceutical companies will not fund the large scale trials which would see it become mainstream. It’s a tragedy, really.

        • sunny77753

          I hope you have honed your listening skills Martin … when people are suffering from bone pain etc. the LDN goes to that pain centre to dull or control that pain … this is not used for ‘recreational’ purposes you horse’s patoot … wakey wakey

    • Martin Spacek

      How about Canada recognize chronic Lyme disease only once peer-reviewed science recognizes, if ever, that such a thing exists?

      https://en.wikipedia.org/wiki/Lyme_disease#Chronic_Lyme_disease_.28CLD.29_and_post-Lyme_syndrome

      • Maria

        This is a controversial subject no doubt. However, there are many doctors/researchers who are working hard to make their voices heard.http://www.ilads.org/ Many disagree with the conventional wisdom. History has taught us that the most commonly adhered to medical opinion is not always right. Change takes time, especially in established professional dosed in unhealthy ego.

        • Martin Spacek

          That’s nice. There are also certain doctors/researchers working hard to make their voices heard on the “dangers” of vaccination, and on the remaining “uncertainty” in anthropogenic global warming. Has history not taught us that letting independently funded scientific peer-reviewed literature settle scientific debates on its own is the best way to set public policy decisions that depend on science? To believe one’s understanding of a subject is better than, what seems to me in this case the vast majority of publishing scientists, is itself a sign of an unhealthy ego. Yes, science can sometimes turn out to be completely wrong, especially when it comes to complex systems like the human body, but such cases are rare. More often, science builds on and refines what’s already known.

          • Rnwondering2

            Martin, go get yourself a good dose of Lyme and display your calm calculated demeanored approach to getting cured. Then you’ll have an opinion worth sharing

          • Martin Spacek

            To let emotion get in the way of reason is to give up. Let’s all go to church and pray Lyme away while we’re at it. To adamantly claim that *chronic* Lyme disease is real, that the bacteria that cause Lyme disease remain even after a full regimen of antibiotics, is, in the face of (admittedly very light but seemingly representative reading) scant evidence and scant support from scientists publishing in peer-reviewed journals, is a brazen and egotistical position to take, whether you’re a patient, a friend or family member, or a disinterested party. Nature is a harsh mistress.

            The analogy to global warming is apt. I haven’t personally noticed the weather getting warming in the few decades of my life, in my little piece of the world, therefore all those climate scientists are wrong. Who do they think they are, telling me that my senses are fooling me? Yet unfortunately, they’re right. 97% agree that AGW is real. No one can cherry pick what science they wish and don’t wish to believe, without indirectly attacking all science, and thereby human progress. As a progressive, I value progress.

            Rnwondering2, I’ll say it yet again: find me some peer-reviewed scientific papers (meta-analyses preferably) that show that chronic Lyme disease is real. Then, on this particular question of science, you’ll have an opinion worth sharing, and a reference to add to the Wikipedia article for others to benefit from. And only then will there be merit in changing public policy to match.

          • Kai Jokela

            I spoke my peace on here replying to some comments on my story, and I will say the same thing to you. Are you all seeing and all knowing? Just because there is proof, but not the evidence you are after, that we are wrong. I think you are just looking for attention or have too much time on your hands. I know I do to be looking into this matter. That’s when it doesn’t feel like I have a drill going in my temples at random times and cleaning the house is like running a marathon. Instead of denying something out of sheer ignorance, why not look into the facts that Europe actually vaccinates for this illness. Don’t believe me if you would like, or make some other diluted argument about it. I know it is fact because over half of my family live in Sweden and Finland have had the vaccination personally. I don’t care if I’m right or wrong because that is the farthest from the issue anyways. I just need to get healthy enough to live my life and positively contribute to the town and country I love, and I will do what is required to make that happen so say what you want about it. It is clear you have a standpoint on the matter that differs from myself and therefore, I don’t expect these words to change your mind. I do hope that I can raise awareness for those who want to at least try and make a positive difference in the world so I hope you can at least respect that of all things.

          • Martin Spacek

            “I don’t care if I’m right or wrong because that is farthest from the issue anyways.”

            That is exactly the issue. My concern here is the general disdain for science — real, peer-reviewed independent science — that is becoming increasingly prevalent, at a time when we need it more than ever. Your comment unfortunately underscores this.

            I have no reason to doubt your symptoms, or your claim that European nations vaccinate against Lyme disease. You seem to think that I think Lyme disease is a hoax or something. From my brief reading, the science says that there is currently no evidence for *chronic* Lyme disease. I keep asking for references to peer-reviewed science that says otherwise, but no one here seems to want to take me up on my request.

            Again, from wikipedia:

            “Major US medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health, have stated there is no convincing evidence that Borrelia is involved in the various symptoms classed as chronic Lyme disease, and advise against long-term antibiotic treatment as ineffective and possibly harmful.[118][220][221][222] Prolonged antibiotic therapy presents significant risks and can have dangerous side effects.[233] One death has been reported from an infected catheter as a complication of a 27-month course of intravenous antibiotics for an unsubstantiated diagnosis of chronic Lyme disease.[234] Randomized placebo-controlled studies have shown that antibiotics offer no sustained benefit in “chronic Lyme” patients, a review notes evidence of both placebo effects and significant adverse effects from such treatment.[223]”

            Certainly, the symptoms of chronic Lyme are real, but they’re not Lyme. The best guess, again from wikipedia, is that it’s an autoimmune disorder that lingers after the infection has been cleared out by anitbiotics.

          • sunny77753

            http://www.actionlyme.org …. educate yourself Martin

          • Martin Spacek

            That website looks like a horrible mess. Please aid me in my education by pointing me to specific peer-reviewed scientific articles (preferably review papers) that show that Borrelia survive antibiotic regimens and remain the cause of the symptoms suffered by “chronic Lyme” patients.

          • sunny77753

            hey Martin .. learn anything yet? at all? too afraid to peruse the http://www.actionlyme.org site still? can’t figure out how so many people can know so much about the lies, cover-ups, & murders? .. keep in touch

          • Martin Spacek

            Some of us have other things to do as well…

          • sunny77753

            Too true Martin … Just like Lyme disease patients trying to find treatment & even more so — a proper test & correct diagnosis to begin with …
            Hope it doesn’t take you too long to pick out all the crow bones ….

          • Kai Jokela

            But you have all the time in the world to read Wikipedia? Too bad that you just proved that you are too ignorant to admit that maybe some of what is said on these sites makes some sense?

          • sunny77753

            find out about OspA ? catch anything on the lies & frauds with research scientists? oh wait !!! I better go ask wiki … apparently that’s like a god to this sheeple …

          • Kai Jokela

            Hahah the fact that you treat wikipedia like a bible is ridiculous! You do realize that it is a public forum for articles so not everything there is fact. I could literally go on and edit any article regardless of the information being true.. But since it is the prophecy known as Wikipedia, it has to be right!! That also must mean that since you seem to be an expert because you read an article on Wikipedia, that means the 3 or 4 people WITHIN 50 KILOMETRES OF ONE ANOTHER, that struggle to simply think, don’t have it. It’s not that there isn’t any scientific facts regarding the issue, you’re just turning your nose at them. Whether or not you believe the legitimate facts is exactly the problem we are facing. That is the fact that stubborn people like you refuse to even listen to relevant facts because it goes against what they believe. Whether it is for fear of humility or just the fact that nobody believes anything until it affects them directly.

          • sunny77753

            MCIDS … look it up

          • Avie
          • James Carter

            Martin, absence of proof is not proof. Where do you think the political will came from to present a bill? Thousands of people inventing symptoms? Just because there is inadequate research does not mean that it should be ignored. Having lyme is like having AIDS or MS In the 1970s…

            Doctors are so convinced they know everything out there that they tell patients they are nuts. Arguments that start with someone who has no experience or regular interaction with Lyme patients and read the Merck manual once and a Wikipedia article are equally dangerous, I don’t care how long you went to school for. If you seriously want to comment on Lyme, go to Connecticut, and speak with an epidemiologist, read the latest CDC guidelines from the US. Until then, being a GP from BC does not make you any more an authority on the subject than a patient who had a rash, and then their life went to hell and never got better (some of these people also went to school for a very long time).

            Within the cohort of Lyme suffers (aka crazy people) there are plenty of people who know how to read and dissect peer reviewed studies and do so voraciously. the only conclusion is there are a lot of people who are struggling to live their lives, loosing their jobs and a general lack of peer reviewed research or funding.

            For people who rely on “experience” and “in my professional opinion” (also known as statistically weak information), this may help: DDT was banned about 30 years ago, since then ticks with Borrelia and other co-infections have been found in greater numbers accross the world. It is not an increasing number of crazy patients, it is doctors not having the background to understand that not every increase in “obscure” conditions is caused by patients with physicians sickness toiling up in the night on WebMD.

          • tnkrbell

            Martin Spacek,
            It is obvious by your comments that you are one of those guys who hears only a little bit of the story but acts like he knows it all. Shame on you!

            Here are just a few “peer-reviewed articles” that do not support the IDSA’s conclusions. And hey, there are hundreds more where they came from.

            Make sure you read each and every one of these articles and search the site they came from and read all the rest of the research before you go mouthing off about a subject you know nothing of.

            And, oh by the way, if you want more proof, please do go find it yourself next time. Stop harassing people that are ill just because you don’t understand their illness!

            http://www.ncbi.nlm.nih.gov/pubmed/23967405
            http://www.ncbi.nlm.nih.gov/pubmed/23876218
            http://www.ncbi.nlm.nih.gov/pubmed/23797360
            http://www.ncbi.nlm.nih.gov/pubmed/23797360
            http://www.ncbi.nlm.nih.gov/pubmed/23637552
            http://www.ncbi.nlm.nih.gov/pubmed/23460518
            http://www.ncbi.nlm.nih.gov/pubmed/23400696
            http://www.ncbi.nlm.nih.gov/pubmed/23356102
            http://www.ncbi.nlm.nih.gov/pubmed/23346260
            http://www.ncbi.nlm.nih.gov/pubmed/23248715
            http://www.ncbi.nlm.nih.gov/pubmed/23091570
            http://www.ncbi.nlm.nih.gov/pubmed/23075442
            http://www.ncbi.nlm.nih.gov/pubmed/22922244
            http://www.ncbi.nlm.nih.gov/pubmed/22889796

          • sunny77753

            there you go Martin Spacek .. I was just about to leave same info … you have probably been told this a few times but don’t have any listening abilities … try opening your mind for once instead of your ceaseless mouth … & actually do the research … & once again — you have NO opinion … have a nice day

          • Martin Spacek

            Thanks for contributing nothing to the discussion.

          • Kai Jokela

            I have to say the same for you :)

          • Martin Spacek

            Thanks for keeping it rational and unemotional.

            But genuinely, thanks for the links. These are all very recent papers. From what I can tell, none of them claim to show that latent infection is the cause of chronic Lyme symptoms.

            Why not add reference some of these recent results on the wiki page, for everyone else to benefit from. The most useful one might be this one, the meta-analysis on the effectiveness of restarting antibiotic treatment:

            http://www.ncbi.nlm.nih.gov/pubmed/22922244

            If asking for peer-reviewed references is harassment, then I’m more guilty than you, or those I’ve apparently harassed here, can imagine. If only we were all so guilty.

          • sunny77753

            hmmmm … wiki head or nih.gov troll … which is it?
            You say you’re feeling guilty as you think you have had the power to harass people?
            Might be time to research “maturity” — oh & here’s a real stickler Martin — “OspA”

          • sunny77753

            p.s. .. check out http://www.CanLyme.com
            SPECIFICALLY Researcher John Scott’s letter re: The Nature of Things & The Mystery of Lyme Disease –
            Hopefully this has been written recently enough for you & you will be able to research a bit of this scientists’ info … enjoy !!

          • Caughtlymeincasualcontact

            Lyme is tricky. The reason why it is difficult to treat is because:
            1. It can drill itself inside our cells.
            2. It can change it’s shape to forms less sensitive to antibiotics (cyst form or round body)
            3. It can make biofilms that are resistant to antibiotics and the immune system.
            4. The spirochete form can shuffle and change it’s outer protein coat to confuse the immune system
            5. It had a slow growth rate maybe only once every month or 28 days requiring long term antibiotics. (Antibiotics required for at least the full germ cycle)
            6. It burrows into deep tissues like joints where there is no blood flow.

            As you can see there are many complications that occur in Lyme treatment making it very difficult to treat. And obviously these mechanisms allow Lyme to be a very resistant infection.

          • Maria

            http://www.ilads.org/files/harvey.pdf

            http://www.bjmp.org/content/role-chronic-bacterial-and-viral-infections-neurodegenerative-neurobehavioral-psychiatric-au

            http://www.hindawi.com/journals/ipid/2010/876450/

            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC423723/pdf/jcinvest00109-0086.pdf

            http://news.ncsu.edu/releases/bartonella/

            …the reality is that there are peer reviewed research out there. I’d hate for someone to read this forum and think Martin has *any* credibility over the hundred of doctors that are part of this new wave of research and education.

          • Carrie

            I know how important peer-reviewed and credible information is. But no one can tell me or the other thousands of people sufferring from this same terrible disease that they are not still sick. I think that universal personal experiences speak for themselves. This is history. How could anyone argue with what people are going through? Fine, don’t call it chronic Lyme. Call it whatever you want. But it is a very real thing and it’s hard to argue with thousands of people who are experiencing the exact same specific set of signs and symptoms only after having come into contact with a tick.

            I would bet my life on it that there are Borrelia spirochetes still living in my body, as well as their friend Babesia. This illness has already almost taken my life.

          • Julia

            That website has peer reviewed research on it. We can’t be responsible if you are too busy trolling to read it.

      • Maria

        Martin, with a controversial subject such as Lyme Disease perhaps some more sophisticated reading, beyond Wikipedia, is needed.

        • Martin Spacek

          Maria, thanks for providing me with links to peer-reviewed scientific papers on the subject, in the same way the wikipedia article does. Yes, wikipedia is only a starting point, but it’s usually a good one, and fairly representative of the state of any given field of research.

      • sunny77753

        hey rocket scientist … check out CDC July 2013 info on “chronic diseases”

    • Caperkelly

      There is a doctor in Port Hawesbury, Nova Scotia, by the name of Ben Boucher. He is retired now, but has been studying this disease(s) for a very long time. He has written a 4 volume set of books about the subject. Best luck.

      • intheeyeofthe storm

        If it hadn’t been for Dr Boucher,I’d be much sicker than I am. I learned a lot about how to tell which symptoms belonged to which “lyme” infection ie Bartonella,babesia and borrelia. There are herbal tinctures that can help the immune system with this battle. Babesia(part of the “lyme” infection) cannot be treated with antibiotics because it is a blood parasite not a bacteria. Babesia takes oxygen from the blood and causes a malaria like illness similar to chronic fatigue syndrome.Dr Boucher needs to un-retire. He should be instructing the doctors of NOva Scotia on how to recognize and treat “Lyme”disease and overseeing the treatment protocol. I hope he will consider practising again.

    • sunny77753

      http://www.CanLyme.com ………. or Dr. Murakami Lyme Education & Awareness clinic in BC …………. Dr. M helped me IMMENSELY !!!!

      • Lisa

        I had heard that Dr. Murakami lost his medical license. Do you know if he is still practicing? I have heard great things about him and I can’t find anyone to help me in Edmonton.

        • sunny77753

          Hi Lisa … Dr M did not lose his license … he retired before the chronies at CDC & College of Physicians & Surgeons bludgeoned him financially etc. — he has The Ernie Murakami Lyme Research & Awareness site in internet & there is now a Lyme Disease Association of Alberta … all the best !! LDAA is in net & fb …

    • Tina

      This might sound strange, but it may be an issue with mycotoxins, and you may be able to do something about it by avoiding them. Learn more from this guy’s podcast: https://itunes.apple.com/us/podcast/bulletproof-executive-radio/id451295014?mt=2&ign-mpt=uo%3D4 – he has had lyme disease since being a young man, and he battled it and got on top of it.

      • Carrie Pohl

        Thanks Tina. This is interesting and helpful.

  • DOUG McLELLAN

    We have a friend who had this illness last summer. It almost killed her. She took months to even find out what she had. It took her months to find a doctor who would give her the meds she needed.
    To man doc’s think it is an American illness.

    • D Vandeleur

      I saw some statistics that it is FAR more prevalent in all of North America – very underdiagnosed & misdiagnosed. Denial lives!!!

  • AngelaMary

    THANK YOU Elizabeth May for promoting this bill – SO MANY people get bitten by ticks every year and have no idea how dangerous it can be. Many other people spend time in tick-infested areas and don’t realize they need to be on the look out for ticks – which can bite and then fall off without the bitee noticing. When someone does get a reaction or a rash, there’s precious little info in BC on what to do. Here’s my story – for people who have been bitten by a tick and are getting a reaction, but are not getting the right information.

    I got bitten by tick in 1998 and the resulting sore festered for a week and a half – it was NOT a bulls-eye rash at all – when I finally went to my doctor. Even though Lymes was extremely rare back then (I ended up being the 32 recorded person in BC to get it), my doctor, thank goodness, decided to put me on a round of antibiotics – Doxycycline for 10 days – as recommended in a provincial disease specs booklet she had. When a perfect bulls-eye rash appeared about three days after I finished the round, I went to the disease control centre in Courtenay who confirmed it was Lymes (I did take the test as well, but it came back negative since I was on anitbiotics most of the time). I went back on antibiotics and called ‘experts’ in B.C. to find out how long I needed to take them. People referred to medical journal articles (all of which ended up being wrong) but no one could tell me for sure. I finally called down to the CDC in San Francisco – and a doctor there explained that the spirochete (the bacteria that causes Lymes) has a 28 day reproductive cycle and that you have to take antibiotics for at least 28 – preferably 30 or 31 days – to ensure that you kill off all the bacteria. I also called the CDC in New York City just to double check and they said the same thing. So I took the antibiotics for 31 days and managed to avoid getting Lymes.

    I don’t understand why doctors here wouldn’t get this information themselves from jurisdictions that have dealt with this much more. This bill will help break down the info silo we seem to have around this issue.

    I will be writing the MP in riding as well as the leaders of all the parties to exhort them to support this bill. Hope everyone else will do the same.

    • Wendie D

      Thank you Elizabeth for backing this bill. I have a close personal friend here in Ontario who was finally diagnosed with Lyme after years of illness. Unable to obtain treatment here in Canada, she is forced to seek medical care in the USA.. Being unable to work, she is draining her financial resources in an attempt to get well. It is devastating to see someone previously energetic and so talented unable to get through a day of simple activity. We need this legislation and changes to diagnositcs and treatments for Lyme. The USA is so far ahead of us on this. Why is our medical system unprepared to allow our doctors to treat this disease aggressively? (that’s a rhetorical question)

  • Cheryl Abbate

    I have had Lyme Disease since being bitten by a tick in 2007, even though I had two negative ELISA tests in Ontario, even after my dog tested positive at the veterinary office. After my second negative test, I searched online to find out what kind of doctor to see when you want to rule out Lyme. Finally, I was diagnosed by an LLMD in Michigan in 2011, four and a half years after my initial tick bite, and already in the late or chronic stage. I have lost the job I had held for fourteen years, and have had to exhaust our retirement savings in order to save my life. The travel expense, the cost of medical treatment, the lost health, the shortening of my life span, is all because I wasn’t diagnosed when I first became sick six weeks after that tick bite I received while living in what I now know has been an endemic area for many years. Treating patients with Lyme appears to be a crime within the medical community in this country. Unless there are enormous improvements to diagnosing and treating Lyme, we should all live in fear. Is there a risk to receiving a blood transfusion because of no screening available for Lyme? What about organ transplants? We could go in to a hospital and receive a transfusion or transplant and come out with Lyme, couldn’t we? That is frightening! If we do not improve treatment for this debilitating, life threatening condition people could acquire Lyme through methods other than the bite of a tick. Let’s pass this Bill and get busy doing the right thing – for the sake of ALL of us!

  • David Fiske

    I believe the tick has to be biting you for 48 hours for you to get the disease and that there is also a pill you can get prescribed that stops the disease if taken immediately.

    • Dave

      Not 100% true. If it the tick is compressed (like rolling over in your sleep or pinching its body to remove the tick) it forces the fluids carrying the disease from the tick to your bloodstream quickly.

    • Maria

      A number of studies have suggested that the bacteria can be present in the central nervous system an alarming three hours after a bite. I was recently bit. The tick was removed in less than 24 hours, and I’ve received a positive diagnosis.

      My Mom has had chronic Lyme disease for almost a decade. As such, I’m maybe more aware than most, and took immediate and proactive steps when I was bitten.

      I was on antibiotics, as recommended by a Canadian physician less than 48 hours after the bite. The Canadian doctor went out of their way to assure me that the risk was very minimal, and reluctantly prescribed more antibiotics when I insisted the 10 day standard treatment was not enough.

      Two months later, after traveling to the states, I’ve received a positive test result.

      I’m being treated by an American doctor who is part of ILADS (http://www.ilads.org/) and is much more knowledgeable.

  • bvwbvw

    Good work Miss May. The bacteria is full on in Lunenburg NS.
    Even the dogs are being infected.
    Luckily the medical profession is on top of the game.

    • Junior

      Yes, I have three friends here who have had it -luckily, our local hospital will do a blood test and start you on antibiotics immediately. It just comes down to awareness on the part of the medical people in your community.

      • D Vandeleur

        good on them for standing up for the proven evidence.

  • 3bob3watson3

    As usuall Ms ‘SUPER’ May on it!! Hope those by-elections get on it soon, some help in that house one can count on would be nice, for this and a few other things on the juggle at this point. Hold on, hang in ‘SUPER’ May !!

  • Liz

    If this is an infection would nano silver not be a possible answer? Perhaps Elizabeth, we need to look at this highly effective agent that has been used since Roman times to counter bacteria and viruses. The University of Alberta has patented a nano silver but I believe due to Big Pharma and the extensive and expensive testing that is required, no one is interested in looking at the human application of this fantastic invention.

  • lauriej1

    Dr. Jozef Krop was the first Canadian MD to be concerned about Lyme Disease decades ago. The Canadian Medical Association considered it to be a non-issue! I know several people who have consulted with Dr. Krop and have either eliminated the problem or are in the process.

    http://ecohealthcentre.ca/jozef-krop

  • Bruce Watson

    I have had Lyme Disease for 7 years and had to search and find people with Lyme to help as Doctors refuse to even consider Lyme . They all seem to be afraid to help for fear there licenses will be pulled. So I would like to know which Lyme literate doctors are working hard on this!!! I have been lucky enough to find a Natrophathic doctor that is helping me. It is tight money wise for me and my family after treatments not covered for seven years. I feel so bad for others who can’t afford treatment.

  • AW

    I am currently treating lyme disease and at no help of the medical system. Had I not sought alternative treatments and fought for a diagnosis I would be completely disabled by now. Lyme is a challenging disease – physically, emotionally, psychologically, and neurologically. We need awareness, including from the public. Support has been tremendously difficult for me to find. I cant imagine how many people are suffering this disease and simply haven’t been able to put all the shifting symptoms together. Thanks Elizabeth May!

  • 25 years with lyme

    Chronic Lyme is not recognized in Canada.Tests used in Canada are only useful if recently infected and no MD in Sudbury On ,to my knowledge , is willing or able to treat it due to antiquated information by the medical association and public health
    and government agencies interference.
    Outdated policies and government inaction and misinformation cause sufferers to
    seek help in the US at their own expense, and at their own risk.Doctors refuse to recognize current US testing at reputable US labs due to political wranglings within the profession .
    Although there are a number of cases in Sudbury of chronic lyme our public health agency has only recognized one tick bite or possible lyme case this year.
    Veterinarians in our area are actively treating animals for lyme and they actively
    promote programs for prevention as well in our area but lyme in humans is rarely
    considered so the disease progresses to chronic lyme with devastating consequences.
    Naturopaths and others see and try to treat numerous cases of lyme each year
    but without antibiotic therapy ,careful and complete testing, the lyme spirochete
    causes havoc within the body.
    We need help! Please support this bill.

  • Kai Jokela

    I recently found out that I have had Lyme disease go undiagnosed in my body for an alarming 26 years!!! When I was 6 back Thunder Bay, Ontario in 1987, it was just my dad and I living together so I had to be babysat until he was done work later in the evening. I stayed with family friends on a large acerage. What six year old kid wouldn’t go running around exploring if they had a bunch of land at their disposal?! I came back after one of those journeys with a large mark on my arm that looked like an oversized white-head. Seeing how illiterate doctor’s are on the disease now, you could imagine the lack of knowledge then! So after it went away, we thought nothing of it. When I was 14, I was diagnosed with Juvenille arthritis, which is a tell-tale symptom of Lyme disease. I thought it was just because I was an active football player, surfer, mountain biker, etc., so I just thought that my body was telling me to slow down so I did. Now I am 32, I am glued to the couch, I broke two vertebrae just by coughing. Both fortunately and unfortunately at the same time, I had a friend who was diagnosed with Lyme a few years back as well. She had been tested in Canada, but they said she was fine. The only way she found out she had the illness was through testing done in the United Stated, at a place called iGenex, after the right side of her face had lost function (Bell’s Palsey is another effect ofLyme Disease ). If two people in an area as small as Cedar, can have two life altering cases of Lyme Disease THAT I KNOW OF, why is it still being ignored?! I am writing every paper and governing body in hopes I can raise awareness so nobody has to go through the journey I have just because of sheer ignorance!

    • Doubtful

      Uhh… Hate to break it to you, but Thunder Bay isn’t even close to a Lyme endemic area. There are many other diseases that have signs and symptoms similar to Lyme that are a lot more believable. Having a positive Lyme serology means very little if you thought you contracted Lyme in northern Ontario because the false positive rates are as high as 88%. I think this is less a case of illiterate doctors and more of a case of grasping at straws.

      • Stella

        Uhh… hate to break it to you but this is exactly why Canada needs a Lyme Disease strategy.

        Why are you so quick to diagnose another person’s experience? Instead of responding negatively to an experience that has clearly impacted this person’s life, why not have some compassion and support a health strategy that might bring clarity to his/her situation.

        Kai is clearly not alone based on all the testimonies posted here.

      • Maria

        This is a controversial subject no doubt. However, there are many doctors/researchers who are working hard to make their voices heard. http://www.ilads.org/ Many disagree with the conventional wisdom. History has taught us that the most commonly adhered to medical opinion is not always right. Change takes time, especially in established professional dosed in unhealthy ego.

        • Martin Spacek

          Thanks for copying and pasting your replies. Really. Thanks.

      • Kai Jokela

        Oh that’s right, you’re the all seeing and all knowing. How do you expect me to give you any credibility when you don’t even have the marbles to sign in with your name? All I know is I had a bite that was similar to a tick
        when I lived in Thunder Bay, I had juvenile arthritis, and I have had symptoms
        ever since that bite but thought that since I didn’t know any different, that
        was just my health. Those are all effects of Lyme and I tested positive. When
        you test positive for something, have all the symptoms, and the results came back positive from a professional testing sight in the US (which does not gain anything from
        me testing positive), that’s usually a pretty decent conclusion. I don’t know
        where you got your facts from but I’ve been researching this topic for a year
        and it is you know, only DIRECTLY AFFECTING ME AND MY FAMILY!!! But yeah,
        seeing how you obviously know everything I’ve been through, YOU seem to know
        where every tick in the world is, and YOU are certain that my symptoms are
        something else….YOU are right, I am wrong! 100% spot on!! My fractured spine from a cough,
        juvenile arthritis, and spending the entire summer stuck wishing I was dead is
        something else because YOU don’t think Thunder Bay is an affected area. Makes
        sense…Even if you are right, there’s better ways to POSITIVELY enforce your
        point of view instead of calling me a liar and that I’m “grasping
        straws”. What’s next? Are you going to tell me that because my friend I
        had discussed in my speal above lives in a one-bedroom house and that it was
        5:34 in the evening on a Tuesday, that she didn’t get Bell’s Palsey? I’m not throwing the doctors under the bus because it is lack of information, not because the doctors don’t care. I’ve heard stories of doctors in tears because they are not allowed to treat patients properly and I deeply sympathize with their situation on this! I’m trying to post something to help people who are in a similar situation, not bash people with ignorant comments so get off your high horse!!

      • Kai Jokela

        Oh that’s right, you’re the all seeing and all knowing person who doesn’t even have the balls to sign in with their name. That does a lot for your credibility. All I know is I had a bite that was similar to a tick when I lived in Thunder Bay, I had juvenile arthritis, and I have had symptoms ever since that bite but thought that since I didn’t know any different, that was just my health. Those are all effects of Lyme and I tested positive. When you test positive for something, have all the symptoms, and the results came from a professional testing sight in the US (which does not gain anything from me testing positive), that’s usually a pretty decent conclusion. I don’t know where you got your facts from but I’ve been researching this topic for a year and it is you know, only DIRECTLY AFFECTING ME AND MY FAMILY!!! But yeah, seeing how you obviously know everything I’ve been through, YOU seem to know where every tick in the world is, and YOU are certain that my symptoms are something else….YOU are right, I am wrong! 100% spot on!! My fractured spine from a cough, juvenile arthritis, and spending the entire summer stuck wishing I was dead is something else because YOU don’t think Thunder Bay is an affected area. Makes sense…Even if you are right, there’s better ways to POSITIVELY enforce your point of view instead of calling me a liar and that I’m “grasping straws”. What’s next? Are you going to tell me that because my friend I had discussed in my speal above lives in a one-bedroom house and that it was 5:34 in the evening on a Tuesday, that she didn’t get Bell’s Palsey? I am not bashing doctors directly because they are not the problem. I have heard stories from people who’s doctors are in tears because they can do nothing. I am not trying to come on here and bash people, I am trying to give people more insight from the experience I’ve had so get off your high horse….Whoever you are.

  • G. Manzer

    Doctors here seem reluctant to diagnosis Lymes Disease because they have no cure. My son received a false negative result last summer from test conducted in BC. Further (and more expensive) tests in the US confirmed the diagnosis. I support Ms. May’s private members bill.

  • Anne Havard

    I have had Lyme disease since 1990, when I was bitten by a tick while planting trees in Northwest BC. I thought the bite was a spider bite and didn’t even go to a doctor. Even if I had, no-one would have known what it was. It took 10 years to get a diagnosis, and then that Doctor, (Dr. Murakami, in Hope) who was the only one treating Lyme in Canada at the time, was forced to retire by the College of Physicians and Surgeons of BC – for trying to treat his patients with long term antibiotics. So I was left with no-one in the Canadian Medical System who knew enough about this newly emerging illness to help me. I cannot afford to travel to the United States because my income decreased dramatically when I had to quit working in 2002. I was treated for a year in 1996, and the Lyme was beaten back for about 3 years, but it then returned with the dissolution of my marriage (stress inhibits the immune system). My son also has a lesser degree of problem with Lyme – he contracted it in-utero, and was born a month prematurely and then languished for 3 or 4 years before I had him treated for Giardia (similar symptoms and treatment to Lyme). This illness has changed my life completely. I cannot work more than 2 hours a day, one or two days a week. I am always tired, and cannot do anything very physical without having inflammation take over. Please, please, please – lets try and get together to fight this new, but very powerful and quickly spreading bacteria!

  • linlai

    My daughter contracted Lyme, likely during a visit to Vancouver Island, in 2007 when she was four years old. She very quickly became severely ill — more than 20 pediatric specialists, many invasive tests, and weeks of hospitalizations did not find the answer and her doctors sent her home with what they said was an untreatable neurodegenerative illness. She lost her ability to speak, lost her memory and became severely disabled. We never saw the tick, nor the rash. After she had been ill for a year I found out about the possibility of Lyme from a NEWSPAPER article, never once had any doctor mentioned it, and she had not even had the poor tests available. With treatment she recovered, although because her tickborne illnesses were untreated for so long, she also has experienced severe relapses, but always responds well when treated with antibiotics. Her local doctors now acknowledge that she likely has a chronic form of Lyme but they will not treat her because of their own risks — e.g. no infectious diseases doctor will support them, or advise re/ treatment. So, here we are again, five years later, returning to the US for out-of- pocket treatment. My daughter cannot believe that she does not matter enough to the Canadian medical system — that no one cares enough to treat her actual illness–they will only treat her symptoms. This approach ends up becoming far more expensive to the system than prescribing the antibiotics that clear up the symptoms. The costs to the medical system of not treating her Lyme has been likely more than $250, 000 due to hospitalizations, tests, specialists etc. — antibiotics are far cheaper. We’ve spent more than $50,000 on out-of-pocket and out-of-country treatment, and still counting. Of course, the costs for my daughter of having her disease so neglected by Canadian doctors is immeasurable — how much are the lost years of childhood worth? Thank you, Elizabeth May for doing this important work.

  • Seeking Truth

    there is so much evidence that Lyme Disease exists, wrecking so many lives & draining so many families’ finances, & can be SUCH AN EXPENSE TO OUR HEALTH CARE SYSTEM & STILL so much DENIAL … it must be a consipiracy against our system…. big pharma???, doctors who cross their fingers when taking the Hippocratic Oath????? … it’s criminal at best!

  • me

    Many of the statements here are not backed up by facts. Randomized trials of prolonged exposure to IV antibiotics have not shown any benefit to people with Lyme. There is no good science to say that the infection persists after an initial several week period of antibiotic therapy, though an autoimmune process can persist which unfortunately does not respond to antimicrobials. Any discussion on Lyme needs to be backed up by facts. There is a lot of misinformation on the web.

    • Wendy

      Have you actually read these studies about long-term antibiotics, and the conclusions that both sides of the debate have made about them? It is inconclusive at best as evidenced by the fact that both sides use the same studies to bolster their positions. Also, the RCT study protocols done to date have only looked at short-term use of antibiotics, not the longer term use commonly used by LLMDs. And they have only looked at limited numbers of antibiotics. More research on this needs to be done for any real conclusive evidence. In the meantime, given no other options provided by mainstream docs and the positive results gained by the long-term treatment with antiobiotic prototcols by LLMDs (even if primarily anecdotal), treatment with long-term antibiotics in combination with other supportive therapies is the best option for many people.

      In terms of the persistence of lyme, there are loads of studies that prove it persists for years and that it behaves similarly to syphilis, the other spirochete illness which mainstream docs treat with long-term antibiotics.

    • Maria

      http://www.ilads.org/ There is a lot of positive research out there. There are no easy answers, but there is a lot of evidence that supports chronic Lyme disease.

  • Sherry 837

    It is unbelievable that people can suffer such devastation and not get the diagnosis and care they need here in Canada. My heart goes out to the people who have told their stories. It also occurs to me that in the Greater Victoria area there are issues with an overpopulation of deer who carry the ticks responsible. Doesn’t anybody see the connection between these two issues?

  • diamor

    I was bitten by a tick in 2003 but in spite of taking the tick to my doctor and having a bulls eye rash the doctor would not diagnose it. It took a year and a half, visiting many specialists and being told I had: cardiomyopathy, Chronic Fatigue Syndrome, Fibromyalgia, early-onset dementia, “it was all in my head”, and multiple myeloma I was put into hospital for a month and finally got to see an infectious disease specialist. Though reluctant to do so, he did put me on heavy duty antibiotics and I finally began to improve.
    However, ten years later I still deal with the damage done in terms of severe pain, memory loss and other problems related to the disease’s attack on my nervous system and brain. It cost hundreds of thousands of dollars to the medical system when it would have been easily dealt with if the initial doctor had listened to me and prescribed antibiotics until my symptoms had disappeared, probably at a cost of less than $100. Besides that loss was the loss of my business, my health and ten years of my life. Is it too much to ask to have doctors try the simple antibiotic route before too much damage is done to our lives?
    Thank you Elizabeth for taking on this fight for us. Most of us don’t have the energy to fight for the cause while we fight this disease.

  • Jean MacDonell

    http://www.youtube.com/watch?v=sxWgS0XLVqw
    Please if you do nothing else, watch not only this trailer to this documentary all about Lyme Disease, but watch the movie. I have seen first hand what this devastating disease can do to a family. The misdiagnosis , ill fated treatments, the suffering needlessly endured. There is nothing to lose to ASSUME that Canada will and IS having the same experiences as the U.S. Learn from their mistakes and how they completely dismissed the idea that Chronic Lyme disease existed! Canada needs to treat this a an enemy at their door. Like no other they have encountered. For the sake of all Canadians and their health.

  • Joan Jones

    Thank you so much for raising the need for public awareness and treatment for this disease. My son quickly fell ill experiencing lethargy, neck stiffness and “excruciating pain” (his words) in his back. There was no “bull’s eye” symptom, and he went to two Toronto hospital emergency departments, his family doctor and the walk in clinic looking for relief. Pain medication was given and increased in strength.
    We shall be forever grateful to the walk-in clinic doctor, Dr. Sood at the Albany Clinic who persisted with further blood tests until Lyme disease was found. It is important that treatment begin within the first month of getting the disease. Appropriate medication was given and after many months my son’s good health returned.
    No one during those anxious days made a connection between the fact that my son had recently returned from Connecticut,U.S.A. where this disease was first named after the Lyme community.

  • Luella

    Thank you Elizabeth May. The medical profession is so ignorant about Lyme that most of the people who get it do not get proper treatment. Luckily, I went to a private clinic. I am an RN and knew the doctors at the alternative clinic. Most people don’t have the access to the people who are interested in helping them. Doctors, like Dr Ernie Murakami are persecuted for trying to help Lyme patients.

    • D Vandeleur

      they’re not ignorant, they’re TOO COWARDLY TO STAND BEHIND THEIR HIPPOCRATIC OATH to do their best to cure people.

  • Christine Heidt

    In early 2005 I began having debilitating symptoms including extreme brain fog, dizziness, overwhelming fatigue, numbness, double vision, memory loss (couldn’t even remember my kids names), etc. I couldnt even say a whole sentence, was a babbling mess. I couldn’t remember how to add 2+2 and I have a BSc in Engineering.
    I was quickly diagnosed with multiple sclerosis based on MRI results, which revealed a whopping 6 mm brain lesion along with other smaller ones. Drs refused to prescribe anything and I was sent home to suffer in silence. I was too ill to work and soon my home became my jail. I watched and waited as the world continued on without me.
    I needed to find some answers. I wrapped black plastic around one lens in a pair of reading glasses and attempted to learn about MS online…but I couldnt understand what I was reading and even when I did, I couldn’t remember what I had read immediately after reading it. I could only spend minutes at first because I couldn’t stay awake.
    I do remember that, in time I came across the canlyme website and began learning about Lyme disease. Of the 60 symptoms listed on the site, I had 58. I read pubmed research articles that linked MS to Lyme disease and felt that there may be a connection.
    I asked my MS Dr to test me for Lyme disease but he declined stating that there is no Lyme disease in Canada. After 2 yrs and much prodding, I convinced him to allow me to get tested in Alberta, Canada using the 2 tier regime. He did have one condition. I had to start seeing a psychiatrist, who incidentally described me in her notes as being delusional because of my belief that I have Lyme disease. Of course the test results came back negative and that was the end of that. I was not convinced and began taking herbal remedies because it was the closest thing to antibiotics that I was going to get. Because I was too ill to work, I had no money to travel abroad for treatment so I took what I could find.
    To make a long story short, I was forced to become the crackhead of the antibiotic world, meeting people on street corners and at gas stations in order to get my antibiotic fix. I had to take what I could get and of course would have to research the crap out of each med before taking it. I stayed on herbs and took antibiotics when I could get them.
    At some point (those days are fuzzy in my memories) my parents sprung for testing through Igenex, which came back CDC positive for borellia burgdorferi. I brought my results to several Drs in the Edmonton area, all of whom declined to treat me stating that Igenex results are always positive (odd, considering that the Public Health Agency allowed Dr Harris CEO/President of Igenex to participate in Canada’s guideline creation).
    I continued to self medicate while continuing my internet search. I soon realized that I was likely also infected with bartonella and babesia due to my symptom profile, which included drenching night sweats, heart palpitations, shortness of breath. etc. (not to mention the visualization of these bacteria in my blood specimens). Once I began treating these infections, the associated symptoms began disappearing.
    I went to see my MS Dr a little while back. He said I have benign MS now lol, refuses to believe that Lyme disease could be the cause of MS, thanks to the scant IDSA research. Come to think of it, I haven’t had an MS relapse since I started treating for Lyme disease, way back in 2006 or so,
    I am starting to feel alive again, just finishing up with bartonella treatment. I will probably always have to be on the lookout for a relapse but I know how to take care of myself without a Dr that relies on IDSA methodology.
    It has been a long bumpy road. I have lost my faith in the medical system, have seen it for what it is and that is a money making venture, devoid of feelings other then greed and self righteousness.
    Oh and btw without the internet I would probably be a lump, taking up space in some nursing home, sucking up more money from the province.
    I am pretty well ready to go back to work now after yrs of hell, all created by the almighty IDSA, and the few research articles they use to to back up their “expert opinion”.
    One thing is for sure, and that is that if you have chronic Lyme disease don’t be surprised if you get a negative result using the currently accepted testing procedure in Canada and if you are lucky enough to have a positive result in Canada, 2-6 weeks of antibiotic treatment ain’t gonna do it… 2 years of antibiotics maybe but certainly not 2-6 weeks. I was still a space monkey after 6 months of antibiotics!
    I never would have believed that this situation could happen to a Canadian living in Canada without experiencing it first-hand.
    I am truly ashamed of the health care system in Canada and liken it to a third world country where treatment is not available locally and travel abroad is the only answer.
    It is also rather shocking to realize that the Public Health Agency of Canada actually derives it’s health care initiatives from a profit driven health care system such as that found in the United States.
    And in the end…really, who is the delusional one here?

    • Martin Spacek

      “It is also rather shocking to realize that the Public Health Agency of Canada actually derives it’s health care initiatives from a profit driven health care system such as that found in the United States”

      Sorry, what’s the profit motive in *refusing* to sell antibiotics to someone that desperately wants them? Have you ever considered that, given your visualizations of the bacteria in your blood, that much of the positive benefits of your self-medication was nothing but placebo? This isn’t to denigrate whether or not you actually have or had a medical problem, and whether or not it actually got better. Placebo can be very powerful, more so than many prescription drugs, and the real catcher is that placebo is getting more and more powerful, especially in the west. This might very well be due to the fact that, thanks to the growth of the internet, medical information and disinformation is increasingly easier for everyone to access:

      http://www.wired.com/medtech/drugs/magazine/17-09/ff_placebo_effect?currentPage=all

      • sunny77753

        Why not ‘placebo’ yourself into reality Martin ?? … If you have never dealt with or had to find treatment for Lyme & co-infections for either yourself or a loved one in Canada — You sir … have NO opinion …

        • Martin Spacek

          I agree with you 100%. My opinion, your opinion, and everyone else’s lay opinion on this doesn’t matter. What matters is the peer reviewed science. Peer reviewed science says chronic Lyme disease does not exist. Unfortunately, this is taken as an insult by many. As I said before, nature is indeed a cruel mistress.

          Certainly, something associated with long-undiagnosed and/or untreated Lyme does exist, and some fraction of patients that were confirmed to have Lyme and were treated with antibiotics, end up with chronic autoimmune-like symptoms. But from my brief reading on this, these symptoms do not constitute Lyme disease, because the antibiotics have eliminated the underlying cause of Lyme: the Borrelia genus of bacteria.

          Please prove me wrong by pointing me to some peer-reviewed articles that say otherwise. Otherwise, “You sir … have NO opinion …”

      • Christine Heidt

        Hi Martin,
        It’s definitely a complicated situation, one that I would never have
        believed had I not been placed in this shameful situation myself. It’s a long story but let me try to summarize for you.

        In order to understand the profit margin you need to understand that the good citizens of the USA rely on private health-care insurance to pay for their hospital visits, their Drs visits and their treatments (such as antibiotics). These same insurance companies rely on the IDSA Guidelines when assessing claims. And of course it is in the best interest of the insurance company to deny or limit treatment, therefore guidelines that allow for only a short course of antibiotics are considered to be a financial Godsend for the insurance companies.

        It is a fact that some of the IDSA Lyme disease Guideline member hold shares in the same health care insurance companies that would benefit financially from denying or limiting treatment for Lyme disease. Other IDSA Lyme disease panel members hold patents pertaining to testing and vaccines.
        http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

        You would think that Canadians would frown on this kind of behavior but this is clearly not the case. Canada’s own Guidelines panel consists of at least two IDSA members that hold patents on existing Lyme disease tests.
        http://www.keepandshare.com/doc/3141489/r-dattwyler-patent-wo2000-078966a1?da=y&dnad=y
        http://www.keepandshare.com/doc/3141456/b-johnson-ld-patent-us20030142399a1
        If you would have taken the time to peruse the existing IDSA Guidelines and browse through the reference section you would likely have noticed (well I did anyway) that most of the research belongs to the IDSA guidelines gang, even though there are thousands of articles worldwide that have been compiled by other sources.

        Another interesting point pertains to the quality of the research that comes from the IDSA. Two recent studies have cast a shadow on the “overall level of evidence behind IDSA Practice Guidelines”. One such study concludes with the statement “more then half of the current recommendations of the IDSA are based on level III evidence only”, where level III evidence refers to “expert opinion”

        http://www.keepandshare.com/doc/3835018/analysis-of-overall-level-of-evidence-behind-idsa-practice-guidelines-heun-2011?da=y
        The second article was compiled by the IDSA themselves and basically tells the same story.
        http://www.keepandshare.com/doc/3835028/quality-and-strength-of-evidence-of-idsa-guidelines-kahn-idsa-2010?da=y&dnad=y

        These studies ring true when you consider the weak evidence presented by the IDSA in order to validate their “expert opinion” and deny treatment to chronically ill Lyme disease sufferers. (Post-Lyme disease is what they call it). The IDSA used three of their own clinical trials to back up their claims. In eahc of these trails, ceftriaxone or doxycycline was prescribed for a maximum of 3 mths. The researchers tested only the two antibiotics, however in their infinite wisdom these few IDSA researchers came to the conclusion that all antibiotics in any combination is of absolutely no use for treating chronic Lyme disease (and the CDC is OK with this verdict, go figure).

        Leprosy is an infectious illness that is often treated using multi-therapy over an extended period of time. Leprosy patients are required to take three different antibiotics simultaneously, often for 2 yrs or longer. Imagine if these researchers had stopped their research after three months time because treatment did not cure the illness. Would they have called it post-Leprosy and would they have refused to treat these patients based on their study results? Thankfully we don’t have to worry about this because the researchers did not make any such assumptions.

        The IDSA researchers claim that long term antibiotic use is dangerous meanwhile pimply faced teenagers are being prescribed antibiotics with a flick of the wrist. And what about the beef we buy at the supermarket? Those cows typically live their lives pumped full of antibiotics …and then we eat them. Antibiotic kill all bacteria, good and bad alike. If the good bacteria are not replenished during antibiotic treatment, serious consequences can result. Drs need to start prescribing probiotics along with the antibiotics.

        The CDC has reported that the incidence of Lyme disease in the USA is easily 10 times higher that what has been reported, likely due in part to the current testing regime. That means that over 300,000 people in the USA are infected each year.
        http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html

        Because infectious agents do not observe our border crossings it is highly unlikely that only a few people in Canada are infected each year. As a matter of fact, a couple years ago my vet told me that she had treated a dog that was infected with Lyme disease. The dog had acquired the tick whle visiting the Lauderdale Dog Park in Edmonton, AB/ The dog and the tick both tested positive for Lyme disease using PCR testing (through the AB govt). Lauderdale Dog Park happens to be only about 4 blocks from the home I have lived in for over 20 years. Are animals not considered to be the sentinels of infectious diseases? Does this not send a signal that Lyme disease lives near me? And why do dogs and ticks get better more accurate testing than we do??

        Your comment about placebo effect reminds me of a past friend who told me I could get cured from MS just by using my mind lol, in essence that I could think myself better. He likely thought it was all in my head just because I did not look ill. I was definitively dxd with what they call MS due to the observation of massive brain lesions separated in both time and space as per the prerequisites of MS diagnosis. I later received a CDC positive result to Lyme disease tests. Further, not all antibiotics were effective for me, including ceftriaxone, the very antibiotic that the IDSA used to back up their claims of “post-Lyme disease”.

        MS merely refers to a list of symptoms with no known cause, while Lyme disease encompasses the same set of symptoms but the cause is known. MS is a clinical diagnosis, meaning that there is no conclusive test that will determine or confirm a diagnosis of MS. Meanhile a diagnosis of Lyme disease is only possible with a positive result in two antibody tests.

        I must remind you that I am not the only person dxd with MS who later received a positive Lyme disease test result and who is recovering or has recovered with antibiotics, albeit not with cefuroxime, ceftriaxone or any of the antibiotics that the IDSA has studied in affiliation with their chronic Lyme disease denial. Take for instance Janet Mitchell from Ontario who no longer exhibits the debilitating symptoms of MS since she was dxd and treated for Lyme disease and associated co-infections.
        http://www.youtube.com/watch?v=Zx0gkKja11g

        Ok, so that’s just one person. Let’s discuss Luanne Metz clinical trials involving long term antibiotic use for MS. Metz reported a whopping 84% reduction in lesions in those taking minocycline over a 6 mth period. Imagine that, an 84% reduction in brain lesions. http://www.keepandshare.com/doc/3204074/minocycline-reduces-lesions-of-ms-l-metz
        There is not a single treatment in the world that has been shown to reduce brain lesions in MS, not one single treatment…except minocycline. The current MS treatments cost an average of $40,000 per yr and they dont reduce brain lesions. Minocycline might cost $1,000 per year and it does reduce lesions. Wow!! Other similar studies report similar findings and yet no one seems to have heard about these studies….why? Well that’s simple. It’s because there is no money to be made by prescribing minocycline to treat or cure MS and that is because the patent has expired. So anyway these studies have prompted Paratek Pharmaceuticals to create a tetracycline derivative to treat MS. Paratek had reportedly considered using a non-antibacterial form of the antibiotic however it is clear from their patent application that they have changed their minds and are now designing antibacterials for MS treatment.

        The MS/Lyme disease connection is not a new discovery. Back in 1884, Dr Pierre Marie began the trend by looking for the elusive bacteria he believed to cause MS. In 1911 EF Buzzard published data implicating spirochetes with MS. Bt 1913 Dr W Gye (Bullock) successfully transmitted MS from man to rabbit. he discovered that upon filtering the infected blood or CSF, transmission failed to occur, thus providing evidence that a filterable entity was responsible for MS symptoms. Soon Kuhn, Steiner, Siemerling, Maranesco and Petit had not only transmitted MS but all had isolateed spirochetes from the fluids from both their MS patients and their test animals. Adams, Blacklock and Dunlop also isolated spirochetes from experimentally infected animals. Because the spirochetes were not cultivatable. skepticism began to grow and interest waned. Incidentally, the syphilis spirochete is also currently cultivatable.

        Even today many researchers report that spirochetes have been found in MS blood and tissues so the pool continues to grow. Take Lida Mattman, an esteemed microbiologist and a Nobel Prize nominee who has several lectures devoted to her observations of spirochetes in MS and other diseases. She even has videos of her findings and yet she is not to be believed?? While the IDSA’s weak evidence and “expert opinion” can hold such weight??
        http://www.youtube.com/watch?v=WozrCFW0mRM

        As Dr weizbrain says “Absence of evidence does not mean evidence of absence”. Dr Weizbrain who is a founding member of the IDSA does not rely on the IDSA guidelines for his treatment guidelines. He tries to understand the reasoning behind the inaccurate guidelines in his essay (he does also treat MS with antibiotics with some success)
        http://www.waisbrenclinic.com/chronic-lyme-disease-idsa.html

        I have spent many years studying my illness. I did not just decide that I have Lyme disease. I was a skeptic at first, just like you and I preferred to trust my Dr but as the old saying goes “If you want something done right you have gotta do it yourself”…and so that is what I did after two years of trusting my Dr and yet remaining very ill. And now I am well. Even my own family is astonished. A recent comment that my niece made brought it all home for me.(she is currently working on her master’s degree in clinical psychology, I am so proud of her). My niece recently welcomed me back. She told me that she is so happy to see that I have finally returned!

        • Christine Heidt

          Sorry, I meant that the spiro that causes syphilis is still UN-cultivatable.

          Martin,
          Just one more thing…

          Perhaps you need to read the Schmidt Report in order to gain some more insight into this situation. For your info, the Schmidt Report was commissioned by the B.C. Health minister in an attempt to squelch the Lyme disease uproar in B.C. An impartial study was conducted and the results
          returned to the BC Health minister who promptly shelved the study.

          An astute Lyme disease sufferer fought for her right to see the report and that was when the report became public. This report echoes everything that Lyme disease sufferers have been saying for years, finally the truth is out. In response to the publication of the Schmidt report and the negative feedback it created, the B.C. Health minister committed to the creation of a research center devoted to the impartial study of Lyme disease.

          Unfortunately it has quickly become apparent that the atmosphere of denial is still present within the Center. The
          researchers at the Center will likely work hard to try and disprove the Schmidt report rather than moving forward with some real research.

          http://www.keepandshare.com/doc/2914304/chronic-lyme-disease-in-british-columbia-a-review-of-strategic-and-policy-issues-bt-schmidt

        • Martin Spacek

          Christine,

          That’s the least summarized summary I’ve ever seen.

          Yet again, the word placebo gets a bad name. There’s nothing wrong with placebo. It does actually work, especially for any illness that has anything to do with the nervous system, which includes just about anything to do with pain. To call something placebo shouldn’t be taken as an insult. If it happens to work for you and doesn’t cause side effects, then great. But if it works no better than placebo, then don’t go recommending it to others, when they could just as easily, and more safely and cheaply, take sugar pills.

          MS is an autoimmune disease, and the field seems to think that chronic Lyme may be as well. Apparently some antibiotics, like minocycline, also have anti-inflammatory effects. You claim they work for both MS and chronic Lyme. Therefore, the two are the same disease, or fundamentally connected in some way? That’s vapid speculation. Isn’t the simpler explanation just that they both happen to be autoimmune diseases, and both happen to respond to anti-inflammatories?

          As for the IDSA and vested interests, if that’s true, then that sucks. But there is a world outside of America, and there are independent scientists living out in that world, and they publish. It’s in their best interests to publish new and exciting stuff, like compelling evidence that low-level infection is the cause of chronic Lyme. So unless you’re claiming that the IDSA somehow runs a world-wide conspiracy that prevents all scientists from truthfully publishing their results, you should be able to easily provide us, and Wikipedia, with multiple independent references that continued infection is indeed the cause of chronic Lyme symptoms.

          However, thanks for the Schmidt report. That thing is chock full of references! Finally, something grounded in actual published papers, not hearsay. Too bad it’s a bad scan, and isn’t OCR’d. After skimming around it a bit (it’s long), I really don’t see anything controversial about it. It seems the majority of researchers are skeptical of the claim that any bacteria that might remain after a normal treatment (itself controversial) are responsible for chronic Lyme symptoms (much more controversial). The triggering of an autoimmune response seems to be the majority opinion. Yes there’s uncertainty, but in the face of uncertainty, we need to make public policy decisions using best estimates from science, AKA evidence-based decision making. The best estimate is currently that taking antibiotics long-term is not effective in treating chronic Lyme. For any doctor to do so, in the face of the current state of the science, is to go against the hippocratic oath.

          Why not directly cite the references in the Schmidt report, or at least the ones that fit your desired conclusions, and add them to the Wikipedia article? Why do you feel the need to cite personal stories, instead of peer-reviewed science? This is the disdain, or at least lack of appreciation, for science that I’m talking about. There’s a fine TED talk about this:

          http://www.ted.com/talks/michael_specter_the_danger_of_science_denial.html

          Whoops. Now you’re claiming that MS is an infectious disease? That’s an extraordinary claim that requires extraordinary evidence. Once again, peer-reviewed references please… Frankly, a claim like that makes me question the trustworthiness of everything else you’ve written.

          I think I’m done here. I don’t have a particular interest in Lyme, but in human progress, which depends ever so much on the scientific method. Without it, we’re just stumbling around in the dark, and I hate seeing that candle threatened in yet another context. I’m at least as anti-authoritarian as anyone else here, but to mistake independent publishing scientists around the world to be as monolithic and corruptible as government or industry is way too conspiratorial, even for me.

      • sunny77753

        Martin Spacek .. Enlighten yourself with The Schmidt Report & The Embers Study …
        Have you ever stopped to think how economically valuable people with spirochaetal diseases are to the system? Going from doc to doc … to specialist to specialist … to this centre & that centre … for this & that Rx or herbal needs or a quick fix … big time ka-chinga !! Big Bucks in Big Pharma … a constant misdiagnosis is key to this shameful dilemna & it has been going on for eons …
        When Canada wakes up & sets it’s own updated guidelines & educates the medical people properly to be able to treat without fear of losing their licenses & they can stay out of each others’ pockets (MD’s & BPharm) then maybe those that are dealing with this disease will have some semblance of their lives back .. in the meantime sir, enjoy the read ….

      • sunny77753
      • Avie

        The profit is in the fact that the provincial governments don’t want to pay for even diagnosed Lyme patients to have long-term treatment. It’s not hard to grasp this. There is something actually wrong with you, Martin. People are very sick with this disease and you are deriving entertainment from posting here, deriding their stories? Get some help.

  • Wendy

    Thanks so much Elisabeth for bringing attention to the need for better testing and treatment for Lyme Disease. I was diagnosed by the American lab Igenix about November 2012 after many, many years of symptoms. In the last few years, my symptoms have gotten much worse and I have had to quit graduate studies and close down my consulting business as I can no longer have the energy or the cognitive ability to work. I use a mobility scooter because I don’t have the energy to walk more than a few minutes. I miss out on many, many social events. Extreme fatigue and brain fog (lack of ability to maintain concentration, failing memory, wordfind difficulties, etc) are currently my most severe issues but there is a long list of other symptoms that come and go. I am being treated primarily by an American clinic, with supportive care by my local naturopath. I am not yet improving. Although I love my family doctor, she appears to have no knowledge or access to resources that can help me; my official diagnosis in Canada is ME/CFS. Although I can’t work and haven’t now for 1/1/2 years, I am unable to get CPP because they don’t accept the lyme test from the USA and there are no other tests that indicate that I am ill. In other words, they don’t believe that I really am sick (nor do they believe my doctors’ statements to this effect). I can testify that the lack of belief exacerbates the illness. Again, thanks for this bill. I hope that things improve for the thousands of us who are sick.

  • Holly

    If you read the literature, one of the reasons the powers that be in the health industry do NOT WANT to know more about Lyme Disease is because the treatment is lengthy and expensive. the Health Insurance plans don’t want to cover the costs…. and that is the truth…. Helke Ferrie wrote a book about this situation in Canada, Helke Ferrie, Author of “Ending Denial, available on line. google it.

  • Dorothy Couper

    According to ‘The Nature of Things’ episode this evening, this is becoming a bigger problem due to global warming and doctors who tell you it is not possible to have a tick bite in your particular province as there are none in the area and certainly not in urban areas. What century are they talking about? Just because there are few deer in the area, doesn’t mean that the buggers will not travel on other animals.
    We need to educate the public because the doctors are a LITTLE behind in their reading!!
    Having a non-diagnosis is devastating to the body, the mind, and the soul!

  • Speak

    The Jesse Ventura show Conspiracy Theory had an episode on Lyme’s disease. A must watch.

  • Dave

    I was lucky. I got Lyme in Washington State and had a rapid infection, night sweats, etc but felt normal (not sick but hard, fast symptoms). Having been aware of Lyme and the symptoms previously, my wife & I did research and the symptoms were spot on the aggressive infection, having woken with a severe bite mark (but not the bullseye) on my arm. We gave my doctor in Red Deer the notes from the Lyme websites and he put me on the antibiotics straight away and while I went through the most bizarre side effects (luke warm water felt like dry ice burning my skin), they cleared up and we got it out of my system. That said, I do wonder if my new normal isn’t a touch off what I was previously, with a few ticks in my nervous system remaining.

  • Catherine

    I have Lyme Disease. It took over 3 years for the diagnosis, during this time I endured many many tests from Vancouver to Calgary, from one doctor onto the next. Having the proper test in Canada and immediate treatment, would surely have cost the health care system much less then the endless invasive testing I endured. Many MRIs, CTs, extensive and endless bloodwork, heart monitors, and on. The length of time it took to diagnose also caused long term damage, which has greatly affected my life and those around me. Yes I am thankful to be in Canada, but what political force in their right mind would continue to deny this disease. The proper testing is available in Canada for Lyme, but we cannot access it. The test that is used in Canada is not accurate, this is a proven fact. One has to wonder if there is fear in the officials which relates to having so many people take antibiotics to treat the disease, which is the only way to deal with it. There has to be some hidden agenda, because not testing and treating immediately has the potential to create a very sick person, which will cost more in health care long term.
    Catherine
    Chronic Lymie….thanks to our health care system!

  • Maria

    I find it incredible that someone with symptoms like my Mom (debilitating fatigue, pain and mental fog) was bounced from doctor to doctor for years with no firm diagnosis, and increased need for heavy-duty, narcotic level pain killers. Doctors had no answers for her, and no success relieving her pain, and yet there was such resistance when, after a CBC story, we suggested that perhaps she was experiencing Lyme. (She had ALL the classic symptoms, including severe arthritics in her knees…and she’s 50 years old). A couple years later, we feel absolutely blessed that she’s found a great doctor who the states who is part of ILADS (www.ilads.org). She’s under good care, but unfortunately, healing is limited with such late diagnosis.

    Her Canadian family doctor continues to think its all in her head.

    I was bit by a tick a couple months ago. Knowing more than most people, I was immediately proactive, and was on antibiotics within forty-eight hours. Doctors in Canada were reluctant to prescribe me more than 10 days worth (and at half the dose that the doctor in the States recommended), but knowing what I did, I went immediately to the states to receive proper treatment. Yesterday I received confirmation from the lab in the States that I have a positive test result.

    The Canadian doctor I saw stressed over and over that 10 days of antibiotics was more than enough, and the risk was so, so minimal.

    I’m glad I knew better. But how ridiculous that I have to continue to pay out of pocket, and go to the States for treatment. A month later, I’ve spend $1000 … and that’s just the beginning. I’m lucky to be treated early.

  • Bruce W.

    I support this bill. But we need LYME LITERATE DOCTORS involved in the strategies. Some that believe in CHRONIC LYME as to many of us are having problems getting diagnosed!

    • D Vandeleur

      rather, we need LYME-BITTEN DOCTORS & POLITICIANS! … that would surely get proper action!

      • http://aqk.ca/ Tony Q. King

        I’m willing to take them out for a walk in my woods here in southern Quebec. Beautiful woods, lots of pretty deer, and cute little white-footed mice that my cats always seem to catch and bring in to the house.
        Hey, maybe I could mail a few mice to our MPs. And the postage is free!

  • ningukulu

    we also need a national strategy for heavy metal toxicities and other toxicites; some people are able execrete heavy metals 100 times faster than others. For those of us who are slow execreters we get symptoms of mental and neurological diseases, liver disease and cancer. We are being discriminated against by Canada’s Health Care system on the basis of biochemical disability…

  • Robynn Kerr

    PLEASE READ THIS ARTICLE FROM ENVITA HEALTH SERVICES RE: LYME DISEASE, AND THE VERY INFORMATIVE LINKS AT THE BOTTOM OF THEIR PAGE!!!!!!!
    http://www.envita.com/lyme-disease/lyme-disease-and-complications-the-hidden-public-health-problem-you-need-to-know

    THIS IS WHY WE NEED ALL TESTS, (ELISA, IgG, IgM and Western Blot, but the best test is probably Dark-Field Microscopy Test with Silver Nitrate Stain, Striker Panel.

    - See more at:

    http://www.envita.com/lyme-disease/lyme-disease-and-complications-the-hidden-public-health-problem-you-need-to-know#sthash.Xmt3Onck.dpuf)

    ACCESSIBLE FREE OF CHARGE FOR ALL CANADIAN CITIZENS, ESPECIALLY IN THE SOUTHERN PARTS OF THE PROVINCES.

    WE ALL NEEDS TO BE UP IN ARMS ABOUT THIS AS MANY OF US ARE UNABLE TO AFFORD THE TESTING AND TREATMENT COSTS IN THE STATES!!!!!!!!!!

    WITHOUT TREATMENT LYME DISEASE CAN KILL YOU!!!!!!!!
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    It’s very possible that I may have this Disease. Seven years ago I was a Healthy Cyclist. Now I am barely able to move most days. I can’t exercise, or Ride my Bike. I used to Cycle 20 plus miles a day 7 years ago. In the last few years I have become markedly worse, to the point where I can barely walk, and am Housebound at 48 years old. A lot of days I can barely even get out of bed due to Exhaustion and Pain. I was diagnosed with Fibromyalgia & Myalgic Encephalomyelitis/Chronic Fatigue Syndrome with a Differential Diagnosis of Multiple Sclerosis. Now I’m being tested for Psoriatic Arthritis. I’ve been diagnosed with so many of the things that are now being linked to Lyme Disease, it’s rediculous! My Memory is getting extremely bad. I’m not old enough to have some of these things happen to me. I’m on Disability, I can’t afford to pay for these Tests and Treatment in the States! I know there are many others like me who cannot afford it, who are on Social Services / Ontario Works, or have Low Income Jobs and No Benefits at all!

    ARE WE ALL LEFT TO FADE AWAY AND DIE BECAUSE WE CAN’T AFFORD THE TESTS AND TREATMENT?

  • Lisa Nicks

    My husband was the first case of Lyme in HRM almost 6 years ago. We live on an endemic area in the city. Our dog tested positive and as a health care professional recommended to our physician that the humans of our family be tested. Dr Amr Rostom without hesitation gave me reqs for blood work. Myself and our children who play in the park were negative , my husband however was not. He was immediately consulted to Infectious Disease and the brilliant Dr. David Haas saw him two days later. He was showing neurological involvement( mixing words and concentration problems) all that he chalked up to turning 50, along with the joint issues.
    He had a PICC line inserted the next day and received 28 days of Ceftriaxone.

  • Lisa Nicks

    I have worked voluntarily with Public Health, DND, and all levels of government. Initiatives were started such as awareness campaigns in the local schools, deer baiting for 2years and tick testing. 6 years later all has been forgotten, all deer ticks are considered positive as testing was costly. A colleague explained..Anyone presenting with joint pain should now have ELSA testing, imagine the the cost…..I know both sides and believe it should be part of our annual physical. 3members of my household have been treated for Lyme. Through vigilance we have not been ignored. The Dr is the gateway and we have been blessed with amazing professionals. Sad to say both docs are no longer practicing in NS. We love them both.

  • Wifey

    I had to pay $600 for a proper (using human assays instead of animal ones which is the test for Lymes in Canada) test in California. I had an acute antibody and my doctor recommended I re take the test in a few weeks but I can’t afford to.

  • Lesley Patterson

    My son contracted lyme disease about 5 yrs. ago in Norway. He’s now 41, lives in Edmonton,, and has just undergone a double hip replacement, because the co-infection apparently was rheumatoid arthritis. He has been in extreme pain for yrs and has not been able to walk without a cane or assistance.
    He used to be in excellent health, working out, playing sports for yrs, eating well….and this disease has knocked him right down.
    He spent $1000 to send his blood to California for proper testing because Canada just doesn’t do it right.
    He also spent thousands of dollars on homeopathic and/or naturopathic programs, none of which made much difference in him in a year. So he’s been on so many drugs to be able to manage his life, that his bones got depleted also. So, we’re hoping he has less pain after this surgery, and can one day walk without pain, and build up his bones again.
    I can hardly read the painful stories of others….not because I don’t care, but because I empathize with their suffering. It reminds me of what my son has been through, and is still going through with this major surgery, plus any lyme disease affects that may still be in his body.
    This is devastating for all of us.
    We have been begging…….’begging’ the government to do something, by writing letters to our representatives, talking to medical people, but nothing ever changes.
    If any government official reads this letter, and is able to have an affect, we are still begging for help from our medical system.
    We all have a basic human right to affective health care, and the sooner all you lazy bastards in government realize it, the better off we’ll be.
    Elizabeth May is ‘excluded’ from that last remark, because she is the only one…….the ‘only’ one I know of, who is trying to get some help for lyme disease patients. Thank-you Elizabeth, for seeing the need, and for all you do.

  • http://aqk.ca/ Tony Q. King

    Isn’t it time you all read http://aqk.blogspot.ca/2013_02_10_archive.html ?

    MY nasty experience.

    And, two weeks ago, I again came down with same symptoms (except obviously for the aforementioned Lyme Carditis) !
    I gotta get tested AGAIN! But, THIS TIME it’s gonna be in the USA!

  • montezaro

    All my friends in Europe had it (treated). Every time I went for a hike, even with my socks pulled over my pants I found at least one tick. You must check EVERY part of your body. I never had that bull-eye redness, like the rest of my friends did and never got tested. I had it here, in Canada. My doctor said that there is no need for testing, because he in his long practice never saw a patient with Lyme disease. My symptoms are similar and I am planning to change the doctor.

  • Heming-Stein

    As a Chartered Herbalist I was privileged to be requested by a family and their Naturopathic Doctor to assist with a patient who had had Lyme Disease for over FOUR YEARS. The medical / pharma model was unable to identify her illness.
    I provided Colloidal Silver in large volume and within one year she was symptom free.

    We need medical people to learn to understand the human body in a more holistic model. Most medical practitioners would not even be interested in the specifics of the case I have alluded to because there just isn’t enough money in it for them when using natural substances THAT WORK!!!!

  • Lynn Saunders

    Thank you very much for addressing this issue. Lyme disease needs as much attention as it can get.

  • Roger

    I support Ms. May’s bill and hope it leads to much needed improvements in diagnosis and treatment, perhaps in time to a vaccine against Lyme. I live in a rural part of the country where ticks are common and have been bitten by ticks many times. One bite in 1987 was followed by acute symptoms that were not diagnosed as Lyme disease because at the time the bull’s-eye rash and a bite by the tiny deer tick were considered essential prerequisites for testing. Now we know the disease is spread through the bite of several species of ticks and the bull’s-eye rash is not always present. I went untreated in the early stages and now have chronic severe spinal arthritis and nerve damage. The medical community was ill prepared to recognize the seriousness of the problem 30 years ago when the disease was rapidly spreading throughout the continent, and is only now coming to acknowledge its extent and long-term costs. Elizabeth’s initiative will give this debilitating disease the attention it deserves and, most importantly, help to prevent future infections.

  • John rilett

    I’m concerned about your proposed Bill C-442 and your reason for proposing it. Lyme disease has already been politicized. Richard Blumenthal, Connecticut State Attorney General, sued the IDSA Lyme disease panel for conflict of interest. Sound familiar, Cuccinelli State Attorney of Virginia investigated David Mann? I’m afraid researchers and physicians may be subject to further witch hunts if it appears to be politically expedient. I agree that Lyme disease is difficult to diagnose and treat as are many diseases but Ms May’s statement seems to endorse Canadians travel to the US for treatment which is very expensive when ”
    Most medical authorities agree with this viewpoint: the IDSA, the American Academy of Neurology, the Centers for Disease Control and Prevention (CDC), and the NIH
    advise against long-term antibiotic treatment for chronic Lyme disease,
    given the lack of supporting evidence and the potential toxicities.[116][219][220]”
    “Surely sharing best practices to decrease the extent of Lyme, the
    reliability of diagnosis and the research work toward improving
    treatment regimes is in all of our interests.” Well yes of course, but this needs to be evidence based.

  • Ruwondering2

    I bet the individuals against aggressive care of Lyme have not had the disease. I’ve had it since 06 and was misdignosed by an ignorant Heath care system in the US. If I had taken the MS meds to suppress my immune system the disease would have ravaged me. Instead I initially relied on nutritional healing (the Wahls Diet) then found a Lyme literate MD who has recently prescribed antibiotics, which I have seen work for others@$100 a month. Now I’ve purchased a used hyperbaric chamber, which I have also seen work. F–K the establishment, do something or get out of the way. This is our lives. I’d rather die trying to solve this for my sake, my family, and others.

  • Brian White

    My wife has an illness that is like MS or Lyme. Dr Arata treated my wife for “autonomic Dysfunction” with balloon angioplasty to wake up the vagus nerve that runs beside the neck veins. This “reboots” the autonomic nervous system which (for reasons unknown) is partly asleep. It was a fabulous life changing success. He also treats chronic Lyme with the same procedure because chronic Lyme also turns down the autonomic nervous system. The symptoms he treats include incontinence, brain fog, morning headache, awful balance, fatigue and circulation issues, All these were fixed overnight following the operation for my wife. A young girl called Lotty Vigue had the same success to remove symptoms of chronic Lyme. (there is video of her). Note that Dr. Arata only operates on people with a certain heart rate anomaly and those “fixable” symptoms. Most MS patients have the anomaly anyway but some don’t. There is an extremely good co-relation between the anomaly and likely success from angioplasty. (In the region of 90% chance of improvement)

  • Theresa Giovannini

    Honourable Elizabeth May MP
    Thank you very much for bringing attention to this dreadful disease. pretend it doesn’t exist. My daughter has suffered greatly due to the refusal of most doctors who deny that it exists

  • Marie Gregoire

    Monday october 21 2013

    Bonjour!

    I got bitten on December 7th 2011, I went to the doctor on March 8th 2012 when I saw a bull’s eye shape on my ankle after I removed with a pin what I thought was a splinter that had been on my leg for 3 months. The doctor said no there was no such thing around our area;( Wakefield,Que,) He wouldn’t even look at my ankle, So I got angry and asked him what was the denial for!!! He was insulted and told me he will give me the benefit of the doubt and prescribed Doxicycline but only for 10 days. When I went to the pharmacy, I explained to the pharmacist that 10 days wasn’t enough and she called the doctor, and told him she had read that I needed more days on my prescription and that the picture of my bull’s eye looked like the symptom of Lyme possibly. So he said alright then give her for 21 days. That was it. My own doctor had some tests done,(Elysa or something like that) but I told her there were often false negative on those results. She said no and I want to go further and see a doctor that will help me. Today I have trouble walking and I am worried. I am moving on November 1 and I will be on the top of a metal stairway outside and I hope I can make it up and down, I was a very outgoing peron, my transportation being my own legs. Hope to hear from you. I need to be referred to at least the General Hospital or the Children’s Hospital in Ottawa.
    Thank you

    Marie Gregoire: mariegregoire8@yahoo.com

    819-775-9792 or on November 1 I will be at 819-778-6738
    Dr. Garber told me to see his team at General Hospital Ottawa there after I found his email on internet. But I can’t get a referral from Wakefield Quebec. A question of money I suppose.

  • Noah_Scape

    Well these comments got going the wrong direction!! Ms. May might be referring to the Envita clinic in Arizona that advertises to Canadians to get tested and possibly treated there. OR that lab in California called IGeneX. It cost $900.

    In 2008 Dr. Murikami lost his Doctor’s license for diagnosing Lyme in B.C. – the College of P and S said he was “too zealous”. Basically, the College denies Lyme exists and prefers GPs to declare “Fibro, or depression” instead. Have things changed? A number of clinics are treating Lyme now in BC, but the College had not declared any change of opinion.

    Antibiotics do not always work. Best results are when first infected. I will not join in the fray here other than to say that long term infections are not only hard to treat, they cause a variety of serious neurological problems.

    Personally, I may or may not have this infection, but if I do I am beyond hope in any case due to the ravages of 25 years of whatever is wrong with me.. It would have cost a lot less to diagnose and treat me initially than to dope me uip and put me on disability for 25 years – but the one thing I won’t abide by is that “it is all in my mind”. [it might be all in your mind, but not mine!!]

    I believe the resistance of authorities in B.C. to even just verify that Lyme exists or not, or to diagnose patients with tests now available, has to do with the massive profits made by NOT curing it – treating the symptoms [as in my case] reaps huge profits for Big Pharma…

  • Avie

    Can someone at Ms May’s office please just delete all these posts from Martin Spacek? He’s obviously trolling here, insulting and demeaning Lyme patients and trying to make the discussion all about his particular prejudices.

  • Denis Bryzgounov

    Hello.
    Lyme disease is a horrible thing, no questions about that. But what is even more horrible is that there is a technology out there capable of curing it completely within 3-4 weeks without a use of antibiotics that harm your body.

    Dear Ms. May,

    I tried to contact you twice regarding this matter and never heard back from you or from anyone in your office.

    I’ve been reading the comments to this article and those stories are heartbreaking.
    If for some reason you are not able to answer our messages, could you please at least allow us to help people who replied to this article.

    Anyone interested to get more Information, please message me at denisb_sc@yahoo.ca
    P.S. Ms. May, I’m still hoping to hear back from you.

    Thank you!

  • Sandie

    I also have long term Lyme Disease. It went misdiagnosed for over 6 years with my health getting progressively worse. The best my Canadian Doctors could do for me was offer me more pain pills, “take an extra prednisone, you will feel like a million dollars” I was told! Thank goodness I did my own research. When I asked for a blood test here in Canada I was told that it (Lyme Disease) was very rare and taking a blood test was probably a waste of time. When the test came back positive my Doctor was shocked and didn’t believe the results. (Not his fault…he hadn’t had the training here in Canada to recognize Lyme Disease!!) He ordered the test to be redone, the next time it came back “inconclusive” At this point he was at a loss so sent me to an infectious disease specialist who looked at his referral letter and the blood tests and immediately told me I didn’t have Lyme Disease. The specialist did however, confirm a heart murmur that her intern had discovered when she did a quick examination on me. (The heart murmur caused by the Lyme Disease??? who knows, I didn’t have one prior to getting infected!!) I wasn’t happy with the diagnosis so, my family Doctor sent me to another infectious disease specialist who again told me I didn’t have Lyme Disease and made it quite clear that I was wasting her time! At this point I decided to enlist the help of a Naturopath. I had the blood test repeated at my cost (done this time in a lab in the States) The results were the same as the fist test. To cut a long story short, I am now under the care of Dr. McShane in the states who has me on a “cocktail” of antibiotics and medications that would make your head spin (and does indeed do that sometimes!!) I have been on this treatment for almost 3 months so far. I have been told that I have to continue the treatment until I am without symptoms for at least three months. The good news is, I am seeing some improvement in the Lyme Disease symptoms, the bad news is, the medications do have many side effects of their own that can be challenging to live with. Hopefully I won’t have to be on the medications for too long as I am not sure how long my body, not to mention my pocket book can stand it. Shame on you Canada for not caring enough about us to take us seriously and support our failing health. Just wait until it is one of the “powers that be” that gets infected, then we will see some action!

  • sunny77753

    Denis Bryzgounov .. sorry I lost the thread … there is no cure for this disease but it can be brought into remission … if you do know of some miracle … please post .. thanks

  • Sharon Ward Taylor

    October 17th, 2013 I was diagnosed with chronic Lyme disease. The Canadian Adverse Reaction Newsletter even states in their issue volume 22 – issue 4 – Oct. 2012 ” The currently available Lyme disease test kits have been found to have limitations of sensitivity and specificity, particularly when used on patients with acute infection, which is usually treated with antibiotics. I have been living with the mis diagnosis of MS for the last 14 years. I have spent $$$$ trying to treat MS. I had to send my blood tests out of country and pay $$ for proper testing and diagnosing. Canada does not treat chronic Lyme with the correct antibiotic protocol. It cannot be treated in a 2 – 4 week period. I must go out of country yet again and spend $$$$ on the proper treatment. I don’t abuse our medical system in my province, in my country. Why is it abusing me??

  • Karen

    Thanks, Elizabeth, for your action on this very long needed to change Canadian health law re this debilitating disease, which hasn’t been recognized so that those suffering are treated humanely!

  • Ron

    A friend of mine with Lyme disease had two doctors tell him that they have been ordered to not treat Lyme disease…..one also told him they are not allowed to even acknowledge that anyone has the disease and they cannot make referrals for treatment…actually it wasnt the doctor in the second case…the doctor told him there was nothing they could do..a specialist in Toronto..when he was leaving an assistant to the doctor ran down the hallway and caught up to him and whispered what was going on (that is they have been ordered to not treat or acknowledge Lyme disease) and told him he had to find treatment himself and that it is available and urged him to get some help for himself…but would not direct him in anyway to where the help could be found.
    The ignorance and insensitivity of someone like Martin on here is mind boggling and so is the logic…makes me wonder if he isnt employed by the same authority that has ordered doctors to not treat Lyme disease….if the authorities refuse to acknowledge that there is even Lyme disease in Canada, refuse to acknowledge that there even is anything such as Lyme disease, it is totally inappropriate to conclude that it must follow that the official postion is correct.
    It is like the logic behind discrediting alternative treatments…if a study hasnt been done then it cant be said that it works and is deemed to not work….well it would be equally true that without a study nobody can authoritatively state that it does not work…and nobody will fund a study if they cant make huge profits at the end of it.
    Could it be that it would cost the medical system many billions of dollars to test for and treat Lyme disease in Canada and therefore they are avoiding doing so at the expense of the sufferers of the disease…is there recognition on some level that the finite resources of the government can go toward fat salaries in the health care field or go for treatment but not both…is there awareness that the problem is so big that openly addressing it would nearly bankrupt the health care system.

  • jerry

    Elizabeth May you were on the right track ! But you spelled Lyme wrong it should be lieing if you are refering to the govt

  • Lorne

    Dear Canada and the Entire Planet;

    Dr. Allan MacDonald On You Tube explains why Lime testing is useless;
    Every Dr. and Politician must see his three part series on You Tube
    It will give you the Reality of Tic Bites!!!

    Prevention Education and Fast treatment is the only solution…
    Doxycycline acne Medicine wont kill you but Lyme will mess you up so badly and if Ignored like here in Canada will Cause permanent Damage and can become a Chronic illness;
    The outcome is worse then quick treatment.

    There are 35 strains of Lyme and multiple possible additional infections transmitted;

    There are a million possibilities and combinations possible to be transmitted by a tic Bite.

  • Lorne

    Dear Elizabeth;
    Please have our countries leading medical staff and ministers see the three part series from Dr. Allan Macdonald;

    Best Regards;
    Lorne

  • Jeanette

    I had heard about lyme disease vaccinations in the ’90s. When I asked my doctor about getting a vaccination, he told me that the pharmaceutical companies stopped selling it in Canada because it was not profitable. If we are talking control and prevention wouldn’t it make sense for Health Canada to make this vaccine available to the people at highest risk?

  • davidrcrowe

    It is shocking that the head of the Green Party would be ignoring potential environmental causes for the illnesses that are diagnosed (or misdiagnosed) as Lyme. What about pesticides? Cosmetics? Pharmaceuticals? Recreational drugs? All of those can produce similar symptoms. And saying that someone who has an inaccurate test (A) is infected and (B) that only this can be the cause, is nonsense.

    The comment I’m looking at from Carrie Pohl is representative. She was diagnosed with Lyme disease, at great cost got treatment, and is now UN-healthier. How do we know that the treatment hasn’t made her symptoms worse. Could it be that doctors who throw around antibiotic prescriptions are manipulating and taking advantage of people (or at least pandering to them) who have latched on to Lyme disease as the cause of their symptoms, and refuse to let it go, despite adherence to the theory not having done them any good? But the people who took antibiotics and got better will be remembered, and those who got worse, like Carrier, will just be evidence that the disease is a wily villain.

    The real culprit is the primacy given to infectious disease over environmental disease.

  • Brian White

    Lyme is way more serious than people realize and the Center for disease control are probably underestimating the numbers a lot even at 300,000. Why? Because they refuse to recognize that it exists as a biofilm and the “cystic”form. And that is because it would cost US insurance companies a lot of money if chronic Lyme is recognized. So be very aware that the US insurance companies will be working really hard in the background to make your bill fail. The MS society of Canada will also be working hard to make your bill fail. Many “MS” sufferers in Canada actually have Lyme instead and the revenue these mis-diagnosed people bring in is unbelievable. It is something like $40,000 for MS drugs for one year for a patient. So if we have a good Lyme (borrelia) test and 10,000 to 20,000 “MS” patients get correctly diagnosed with Lyme, it will cost the MS industry $400 MILLION and more per year. They will pay a LOT of money to DEFEAT your Bill to protect their Winnings.

  • house of wayward

    I am 30 days into antibiotics (dioxcyclin) – and am starting to climb out of the “fog” after 8 months of hell (tinnitus, vertigo, nausea and extreme exhaustion). The BC medical establishment totally let me down – thank god for MDs who are well researched into Lyme’s and other similar bio-afflictions. I’ve been told there is no lyme’s in BC – and of course bloodwork gave no indications. Wasn’t even offered the western blot – had to ask for it. If 1% of the US have it then up to 350.000 Cdn have it – and is knocking people out of the economy and out any quailty of life. Yeah to the Green Party – this is exactly why i may switch my vote to you. In any case, lets get LYMES on the map! If i recover, i pledge to do whatever I can to help. And stop the infighting below you guys – it only hurts the sufferers. sd

  • Caughtlymeincasualcontact

    Hi, I just wanted to say, the reason why half of people don’t remember a bulls eye rash is because they probably caught it from someone infected! Honest truth, I caught Lyme, Bartonella, and Mycoplasma from a casual meeting with an old friend! I thought this was only spread through ticks this whole time! So while it’s probably not as contagious as something like the common cold or the flu, if someone is infected and untreated they could potentially be contagious! Anyways after catching this disease just 3 months ago I couldn’t get 8 doctors to believe me because testing is insensitive and inaccurate so I had to spend the big bucks and fly to the US to see an LLMD down there. Having Lyme disease is no joke, at times it was as intense as being on psychedelic drugs and very scary that doesn’t go away! Nothing but a living nightmare for me! I wouldn’t wish this disease on my worst enemy! Testing needs to improve to have better sensitivity, Doctors need education from ILADs, and education needs to come out to inform the general public about transmission not just by ticks but also sexual and casual! Also treatments need to be set up through public health services that are more aggressive. With global warming these kinds of infections will be more prevalent, and are also becoming more serious! Hybrid bugs Lyme/Bart/Babs/Erlicha and who knows what else in one insect bite! This can potentially ruin 1 persons life!

  • Terri James

    I feel compelled to share my story. Keep hope my friends, there are treatments out there that work! How do I know? They worked for me. Things were not easy at first. Here was my symptom list. I was experiencing extreme fatigue, memory loss, brain fog, lack of focus and concentration, disorientation, blurry vision, red swollen eyes,
    respiratory challenges, shallow breathing, weakness, GI pain, neck pain, neck
    creaks, jaw pain, slow healing from surgery, sore throat and cough, insomnia,
    hair loss, mood swings, irritability, and increased allergies and sensitivities. Sounds like a lot doesn’t it? Then, I was referred to Envita. I had tests done and was diagnosed with Lyme disease and heavy metal toxicity. Upon treatment, I immediately saw results, but it’s taken a year to rebuild my strength and feel like myself again. Thanks to Envita, I’m slowly regaining my former active life, including dancing and most of the symptoms from Lyme have completely disappeared.

  • Cher Bear

    I would really love to know what doctors are fighting for us to get the testing and help we need I’m from ontario and I have had Lyme for 21 years I have been refused medical infact my doctor said I’m not even allowed to take the western blot test I’ve had other testing done else where that is positive I was bit and have all the symptoms and still they will not even allow for me to take the western blot test College and physicians removed the Licence of the last doctor who tryed to help and there arn’t any doctors that I can find in ontario trying to help us

How you can help

Follow Me

facebook-icon Facebook Twitter YouTube Digg

eNewsletter


Learn how to support Elizabeth May with her work in Parliament ALT

Island Tides

Finance, Budgets And Shuffles
April 3rd, 2014

What’s up with FATCA? An issue that should concern more than those Canadians with ties to the US
March 20th, 2014

Trains, grain and pipelines
March 6th, 2014

Rewriting our Elections Laws
February 20th, 2014

Shutting down our libraries broke the law
February 6th, 2014

Green Party Logo

Constituency Office

1-9711 Fourth St
Sidney, BC  V8L 2Y8

Phone: 250-657-2000
800-667-9188
Fax: 250-657-2004

E-mail: elizabeth.may.c1a@parl.gc.ca

Parliament Hill Office

518 Confederation Building
House of Commons
Ottawa, ON  K1A 0A6

Phone: 613-996-1119
Fax: 613-996-0850

E-mail: elizabeth.may@parl.gc.ca