Wednesday, May 31, 2017

--Given the potential severity of Lyme disease, McInnis wants the province to undertake a more active tick-monitoring program.----------Dr. Ralph Hawkins, the site lead of general internal medicine at the South Health Campus Hospital in Calgary, has treated more than 100 patients for Lyme disease, and has a wait list at least 200-long.


It seems rather lax that the province is waiting for citizens to send them the ticks they encounter rather than doing a public health project on the ticks in Alberta as well as the presence of the Lyme disease spirochete in such ticks.
Why also has Dr. Ralph Hawkins got a waiting list of more than 200?
If this isn't such a public health hazard then why has this doctor got so many citizens waiting to see him?
More resources, investigation and better diagnostics/treatment protocols need to be developed. Why is this cart before the government horses?

An Alberta doctor is concerned Canada’s guidelines for diagnosing Lyme disease are too narrow, leaving many undiagnosed and suffering. Dr. Ralph Hawkins, the site…
EDMONTONJOURNAL.COM

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When you have families saying that there is a problem and the public health folks saying there isn't a problem then in my mind there is a disconnect somewhere. Could it be that the failure to develop diagnostic tools for the ID of Lyme Disease and the failure to establish long term treatment protocols is designed to save the system money?

This is the only thing I can think of to explain the inexplicable lack of interest by the federal and provincial government to the problems that families are reporting to the public courtesy of social media and the regular media.

My feeling is that the government at all levels is very slow to take action. When it does take action, it seems to do the least possible. What this means for families is we have to protect our own kids and ourselves in the absence of concrete public health action. I mean if the folks in Alberta are asking citizens to send in the ticks rather than proactively checking into the tick problem what the heck is going on in Alberta in terms of this public health hazard?

If the government at all levels ignores the Lyme Disease problem, if the problem is downloaded to families who bear the cost, if there is no suitable protocol for treatment in Canada then in my opinion this is an ethical and performance breach by the government at all levels.

There needs to be action taken.
I mean we can't ignore the ticks and the disease when it is clear that peoples' lives are being destroyed. According to this article there is a push for broader guidelines. I think this is warranted. If Dr. Ralph Hawkins has already got 100 patients and has a wait list of 200 -that's a major number of folks that the system is ignoring.  Also Lyme Disease appears to be a very serious illness with sequelae that are unpleasant. I would agree with Susan McInnis of the Lyme Disease Association of Alberta that there needs to be more work done in this area and that a study on ticks would be the place to start:

http://edmontonjournal.com/news/local-news/alberta-doc-pushes-for-broader-guidelines-to-pinpoint-lyme-disease-as-tick-fears-rise

Given the potential severity of Lyme disease, McInnis wants the province to undertake a more active tick-monitoring program.

**
Just waiting for folks to find ticks on themselves and provide them to the province seems rather lacklustre as research. I'd say the government at all levels needs to do the research required, develop the protocols to capture all possible cases and limit the damage to these citizens so that they don't end up devastated both medically and financially.

http://edmontonjournal.com/news/local-news/alberta-doc-pushes-for-broader-guidelines-to-pinpoint-lyme-disease-as-tick-fears-rise

Alberta doc pushes for broader guidelines to pinpoint Lyme disease as tick fears rise

Published on: May 23, 2016 | Last Updated: May 23, 2016 9:44 PM MDT
Susan McInnis, pictured  in Calgary, Ab., on Saturday May 21, 2016, had a hard time getting her Lyme Disease diagnosed but is now fully recovered.
Susan McInnis, pictured in Calgary, Ab., on Saturday May 21, 2016, had a hard time getting her Lyme Disease diagnosed but is now fully recovered. LEAH HENNEL / POSTMEDIA
An Alberta doctor is concerned Canada’s guidelines for diagnosing Lyme disease are too narrow, leaving many undiagnosed and suffering.
Dr. Ralph Hawkins, the site lead of general internal medicine at the South Health Campus Hospital in Calgary, has treated more than 100 patients for Lyme disease, and has a wait list at least 200-long.
Currently, the standard Lyme disease diagnosis is based on two blood tests and a particular set of symptoms. But, Hawkins’ takes an alternate approach, basing his diagnoses on tests and a broader set of symptoms.
Hawkins shared his concerns at a conference earlier this week in Ottawa, a first step in developing a federal framework on Lyme disease. He wants the new framework to expand the diagnosis guidelines.
Susan McInnis, who started the Lyme Disease Association of Alberta in 2013 to spread awareness of the disease, also attended the conference. She too wants broader guidelines established.
“As a former patient, it’s quite…it’s alienating as a patient when you’re kind of lost in a health care system within which you can’t really find answers,” said the Calgary woman.
It took three years and eventually travelling to the United States to get her diagnosis and by that time she was “highly debilitated,” said McInnis, who has since fully recovered.
“I developed a balance disorder, I lost control of a lot of the right side of my body,” she explained.
But there is debate within the medical community about whether broader diagnosis guidelines are needed.
Alberta’s deputy chief medical officer of health, for instance, doesn’t think they are.
Dr. Martin Lavoie noted doctors can already make a diagnosis based common symptoms, such as the “bulls-eye” rash, in the early stages of the infection. However, in later stages the two-test system used in Canada should confirm that a patient has Lyme disease, he said.
Alberta Health reports on its website that there have been 63 cases of Lyme disease reported to the department between 1991 and 2014. None of those cases contracted the disease in the province, said Lavoie.
While the department is automatically notified when Albertan cases of Lyme disease are confirmed through standard testing, it would be up to the doctor to report any cases diagnosed based on symptoms, said Lavoie.
Alberta Health cautions that people who go to alternate laboratories in U.S. to get diagnosed should have it confirmed in Canada, as some do not use recognized tests and have been found to result in false positives.
The blacklegged tick, which can transmit Lyme disease to people, is not established in Alberta, Lavoie said.
“But we know that over time, we might be seeing some pockets, some areas, where the tick can establish itself just due to climate change over time,” he said.
Alberta Health relies on people to submit ticks found on themselves or pets to monitor their presence in the province.
In 2014, 1,376 ticks were submitted to the department’s tick-monitoring program. Eighty-one of those were blacklegged ticks and nine tested positive for the bacteria that can cause Lyme disease.
Given the potential severity of Lyme disease, McInnis wants the province to undertake a more active tick-monitoring program.
The passive program is designed to trigger a more active investigation if for example there are a number of ticks submitted from a specific area or if they get young ticks, which may suggest some ticks have established themselves in an area, said Lavoie.
That hasn’t happened yet, but to practice, a team was sent to do some active surveillance in a few areas in Edmonton, where a few more ticks have been found a bit more often, said Lavoie.
What is Lyme disease?
Lyme disease is a serious infection. A person can get Lyme disease if they a bitten by an infected blacklegged tick.
What are the symptoms of Lyme disease?
Symptoms can vary between people but may include: a round, red rash centred around the tick-bite, flu-like symptoms such as fatigue, fever, chills, headache, weakness, spasms, numbness, swollen lymph node, feelings of fogginess, dizziness, nervous system disorders, arthritis or arthritis-like symptoms, or abnormal heartbeats.
How is Lyme disease treated?
Most cases of Lyme disease are treated with two to four weeks of antibiotics. More severe cases may require longer rounds of antibiotics.
How can you avoid ticks?
Wear closed-toe shoes, long-sleeves and pants, and light coloured clothing (so you can spot ticks more easily) in grassy or wooded areas. Check yourself for ticks after being in those areas.
How can you remove a tick?
Alberta Health suggests that if a tick is attached to your skin, use tweezers to gently grab hold of it at its mouth and head as close to your skin as possible and pull it straight up. To submit it for testing put it in a clean container with a damp cotton ball so it doesn’t dry out.
Where can you submit a tick for testing?

You can submit a tick at an Alberta Health Services Environmental Health Office, a First Nations health centre, or if the tick is found on a pet, at your veterinarian.


Linda Laidlaw
At the Conference to Develop a Federal Framework, Dr. Gregory Taylor Chief Public Health Officer for the Public Health Agency of Canada stated that current blood screens for antibodies are difficult to interpret "at the best of times.... Everyone agrees that we have to have better laboratory testing." Alberta uses the same poor screening tests. The cost of not diagnosing Lyme and tick borne illness is hefty for the province -- my daughter has never had a positive Canadian test and so her 'undiagnosed illness' results in many trips to specialists, hospitalizations and tests for rare genetic conditions she does not have. She was everntully diagnosed with Lyme disease in the US after Alberta Health gave up on her, and treatment for Lyme miraculously helped her for that 'mysterious neurodegenerative illness'. At the conference there were 100 other patients, including a good number of Albertans, presenting with similar stories of misdiagnosis in Canada, at huge costs to the Canadian health care system and worse for the patients themselves.
LikeReply11May 23, 2016 10:04pm
Katara Colls · 
So true! I've been diagnosed with CFS, which I've had symptoms of for about 2 years, and they are getting worse over time. I suggested to my doctor that I be tested for Lyme, as I have all the symptoms and had been camping/hiking near the southeastern border of AB only about a month or so before getting these symptoms. He refused, and so have 2 other doctors I've seen.

Because sending me to various specialists, repeated doctor visits with no answers, and having to go on long-term disability cos I'm unable to maintain a reliable work schedule is so much better than just getting the freakin' test done, right? I mean, even if I don't have it, it'd at least be ruling something out in a relatively simple manner.
LikeReplyAug 11, 2016 12:33pm
Julie Ali · 
It is inexplicable to me that there would not be better diagnostic tools available to identify this illness when it seems to result in devastating illness.

The burden of proof seems to rest on families which is ridiculous.

I also note that some doctors appear to lack the training to even make a guess at this illness and there are reports that long term antibiotic treatment is not permitted in Canada.

http://www.cbc.ca/.../montreal/lyme-disease-canada-1.4131705

Trevor says the Canadian guidelines that restrict doctors from prescribing more than four weeks of antibiotics to Lyme patients do not make sense.

"I wish [Canadian] doctors were allowed to just treat the patients without fear of losing their licence," he said.
LikeReply3 mins
Chris Powell · 
Looking at the 81 black legged ticks submitted & 9 that tested positive for borrelia is indeed a very high ratio and cause for concern. Instead of negating the numbers, public health in cooperation with research scientists needs to do more active surveillance and obtain the true incidence in each province.
The standard test is in desperate need of improvement and has denied thousands of patients access to care.
Dr Hawkin's approach looking at symptoms vs flawed tests is indeed the way forward.
Enough of heads buried in the sand across our country, let's get on with the task of preventing Lyme disease through increased education of the public and especially the medical community, active surveillance, & providing treatments instead of dismissing and ridiculing patients. Thanks to Susan McInnis and to Dr Hawkins fighting on behalf of Canadians.
UnlikeReply5May 24, 2016 2:41pm
Julie Ali · 
Part of the problem may be that diagnosis of Lyme Disease may result in increased costs for the system and so the government at all levels simply ignores the problem.
If this is the case, then this isn't a very satisfactory way of dealing with a public health problem.

If doctors in Canada are not diagnosing the illness, then families have to travel outside of Canada and bear the costs of the diagnosis and treatment elsewhere.

There needs to be studies done on this illness and then the scientific data will result in the requirement for government to both diagnose and treat appropriately. Until we have the medical data, unfortunately the citizens will Lyme Disease will have to keep slogging at getting the information out to the public. It is very unfair in my opinion.
LikeReplyJust now
Lars Lang
Recent published papers by Dr. Kim Lewis, Dr. Eva Sapi, Dr. Ying Zhang and Dr. Stephen Barthold have proven that borrelia burgdorferi is a chronic infection, caused by dormant persister cells and biofilms. We need legislation in Canada that will allow doctors to treat this chronic illness longer than 30 days.
UnlikeReply5May 24, 2016 4:22pm
Jill E Kerney · 
I agree wholeheartedly with Dr Taylor. We are wasting precious time for the patients travelling to specialists and having MRI cat scans ect. Still not coming up with diagnosis. Better testing would quicken treatment and save medical costs and save human suffering. If you have not suffered Lyme or watched family member suffer, how can you possibly say our guidelines are sufficient.
LikeReply7May 24, 2016 10:31am
Andrea Lefkó · 
"The blacklegged tick, which can transmit Lyme disease to people, is not established in Alberta."
"In 2014, 1,376 ticks were submitted to the department’s tick-monitoring program. Eighty-one of those were blacklegged ticks and nine tested positive for the bacteria that can cause Lyme disease." Linda Trefiak White
UnlikeReply3May 24, 2016 12:54pmEdited

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