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Disease underreported in Canada, expert says

Published on September 14, 2011

Ashley Thompson

Lyme disease is difficult to detect, dangerous if left untreated and commonly misdiagnosed.

It’s also striking close to home.

Heather Carter knew little about Lyme disease until she realized she was experiencing the same symptoms as a friend being treated for the bacterial infection that is transmitted to humans through blacklegged tick bites.

Both women, middle-aged Ardoise residents, have been battling extreme fatigue, dizziness, confusion, aching muscles and joints, and a variety of flu-like symptoms this summer.

“It’s not day to day; it’s hour to hour,” said Carter, who no longer drives because she finds it is too difficult to stay alert for an extended period of time.

Carter began taking antibiotics to treat the infection July 28. She did not receive the bulls-eye rash that may appear once someone has been bitten by an infected tick, which makes it easier for doctors to diagnose the disease that has such insidious symptoms it often gets misdiagnosed and left untreated for far too long.

“It’s really quite frightening what can happen if it gets to the chronic stage,” Carter said.

“There are people out there that may have it and not realize it.”

Carter says it is important for people to realize infected ticks are in Nova Scotia. She personally knows of four people in Hants County being treated for Lyme disease.

But, as of Aug. 31, Capital Health Authority spokesman John Gillis said there have been no new cases of Lyme disease reported in Hants County in 2010 or 2011.

Doctor finds statistics misleading

A British Columbia-based Lyme expert, Dr. Ernie Murakami, says relying on reported cases of Lyme disease as an indication of the prevalence of the infection in a Canadian province, or county, can be misleading.

Murakami says there are noteworthy discrepancies between the low quantity of Lyme disease cases reported in Canadian provinces, and the significantly higher number of cases recorded in neighbouring American states.

According to the Communicable Disease Prevention and Control section of the Government of Nova Scotia’s website, 67 cases of Lyme disease have been reported in Nova Scotia since 2002.

Statistics released by the Maine Center for Disease Control and Prevention reveal that Maine, the closest American state to Nova Scotia, had 734 confirmed or probable cases of Lyme disease reported in 2010 alone.

Murakami said a comparison of the number of reported cases in Canadian provinces and bordering American states should act as a wake-up call for many Canadian doctors.

“How can you compare single figures versus thousands across the border? I don’t see how the border could make much of a difference,” he said during a phone interview Sept. 7.

Ticks, which are typically found in wooded areas and long grass, have the ability to travel long distances by latching on to larger species, such as birds, deer or mice.

In Canada, Murakami says, patients must test positive for Lyme disease according to an ELISA test — a detection method that he describes as inadequate — before a case is reported to a public health agency.

“We, as Canadian doctors, are doing a great injustice perpetuating a lie that this ELISA test is the golden standard for the diagnosis of Lyme disease.”

Difficult to diagnose

Murakami says the ELISA test periodically produces false negatives, leading medical professionals to misdiagnose patients with Lyme disease and, in doing so, inadvertently prolonging a patient’s suffering.

“The Western blot test is more specific for Lyme disease, but unless the ELISA is positive, it’s not done in Canada,” explained Murakami, noting that he has sent samples to labs in the United States for advanced testing, only to realize the ELISA tests interpreted in Canada produced inaccurate results.

“We, as Canadian doctors, are doing a great injustice perpetuating a lie that this ELISA test is the golden standard for the diagnosis of Lyme disease.”- Dr. Ernie Murakami

“It’s so frustrating for me to see some people sort of slipping through the cracks as far as the diagnosis of Lyme goes, and this is why I’m dedicating my whole life just to try and educate,” he said.

Murakami, a retired family physician who was awarded Clinical Associate Professor Emeritus status at the University of British Columbia, travels throughout the country lecturing at group functions designed to inform the general public, and any health professionals who will listen.

In his presentations, Murakami discusses the importance of treating Lyme disease on a clinical basis upon identifying the symptoms, rather than waiting for the results of an ELISA test to return from the National Microbiology Lab (NML) in Winnipeg.

A directive released by the Public Health Agency of Canada Feb. 25 stated that 24 false-negative results had been returned from the NML, out of about 1,557 samples tested. The misdiagnosed patients were spread throughout five provinces.

“When someone shows symptoms of Lyme disease and might have been exposed to the ticks that carry it, guidelines recommend that physicians treat the illness, even if it has not been confirmed with laboratory testing,” the release stated.

“All laboratory tests have a margin of error, which is why physicians are encouraged to follow the recommended treatment guidelines and treat patients they suspect may have Lyme disease with antibiotics, even without the results of lab tests.”

Living life Lyme literate

Murakami says general practitioners must treat severe cases of Lyme disease with high levels of antibiotics for longer periods of time than the standard two to four weeks that is recommended for infections identified in the early stages.

“We, as professionals, have to get together… and talk about Lyme disease, and learn,” he said.

“It’s really a struggle to try to get people on board.”

Murakami, founder of the Dr. E. Murakami Centre for Lyme, says he has a better understanding of Lyme disease than most people, but he is often hastily dismissed by medical professionals that are hesitant to change how they diagnose and treat it.

“I’ve treated over 3,000 directly, and about 4,000 indirectly through other doctors and specialists,” he said, adding that some physicians still consult him for advice.

If left untreated, Murakami says, Lyme disease can attack every organ in a person’s body. It is commonly misdiagnosed as heart or mood disorders, arthritis, multiple sclerosis, fibromyalgia, Irritable Bowel Syndrome, ALS or lupus.

Murakami says he has cured people who have been left disabled for years by the debilitating disease, and restored their bodies to good health.

“I have so many happy people telling me what I’ve done for them,” he said.

Murakami will be visiting the Basinview Drive Community School in Bedford at 7 p.m., Sept. 19, to speak about Lyme disease prevention, the proper way to remove a tick, diagnosis methods and treatment options.

The visit to Nova Scotia, Murakami says, is part of his endeavour to promote Lyme literacy from coast to coast.

“I won’t stop.”

To learn more, visit Murakami’s website at www.murakamicentreforlyme.org, or the Canadian Lyme Disease Foundation’s website at www.canlyme.com.

Our Nova Scotian girl and her mother both have Lyme disease and need help. If you are in a position to assist in any way it would be enormously appreciated. Please and heartfelt Thank-you’s in advance.

My daughter and I have been diagnosed with Chronic Lyme Disease. She is 12 and has it since she was two and a half. I was just recently diagnosed and have had it for almost 17 years without knowing. We are fighting our government to have this terrible disease reconized, and treated in Canada. I am unable to work now and have no income coming in and treatment is hard. We are surviving on my husbands pension. Anyone wishing to help in this fight against Lyme is welcome to do so. Thank you in advance.

Up until 2011, there have been 120 cases of Lyme disease confirmed in the province

CBC News

Posted: Sep 5, 2012 7:04 AM AT

Last Updated: Sep 5, 2012 12:22 PM AT

Though numbers of ticks carrying Lyme disease in Nova Scotia haven’t been confirmed yet for 2012, one New Brunswick scientist warns that it could be on the rise.

Ticks were first spotted at Admiral’s Cove Park in Bedford in 2006.

It’s one of five areas in the province where Lyme disease and the ticks that carry it have been found.

Researchers at Mount Allison University said the number of ticks carrying the disease has jumped from 15 per cent to 40 per cent in New Brunswick.

Professor Vett Lloyd said numbers haven’t been confirmed in Nova Scotia, but it’s possible the results are similar.

“There are probably pockets where the frequency is 40 per cent, there may also be small regions where the frequency is higher,” Lloyd said.

Two years ago the province overruled a decision by city council to spray an insecticide all around Admiral’s Cove Park to try to control the spread of the tick.

Deer baiting stations may be the best defence against the spread of the disease.

As the deer bends its neck to eat corn, an insecticide is applied that’s supposed kill any tick on its body.

Stopping the spread

Andrew Hebda, an entomologist at the Nova Scotia Museum of Natural History, said he believes the increase isn’t as high as some scientists claim it to be, but there’s no stopping the spread.

see full story:

http://www.cbc.ca/news/canada/nova-scotia/story/2012/09/04/ns-lyme-disease-nova-scotia.html

Naturopathic Management of Chronic Lyme Disease
by Dr. Bryan J. Rade

Dr. Bryan Rade, ND

What is Chronic Lyme Disease?
Chronic Lyme is an infectious disease initiated by the bacterium Borrelia burgdorferi.  It is associated with a vast milieu of symptoms (indeed, it is known as the great mimicker and can present with symptom pictures similar to chronic fatigue syndrome, fibromyalgia, multiple sclerosis, etc.).  Most commonly its symptoms include:
-          Fatigue
-          Pain (joints, muscles, etc.)
-          Neurological symptoms (numbness, tingling, spasms, etc.)
-          Cognitive symptoms (“brain fog”, loss of memory, anxiety, depression, etc.)
-          Cyclical symptoms (periods of symptom improvement and worsening)
…however this is by no means a comprehensive list, and every chronic Lyme patient is unique.
 
What about the co-infections?
Lyme is also frequently associated with so-called co-infections; other microorganisms can infect the patient at the same time as Lyme (i.e. transmitted by the same mosquito, fly, or tick) or can infect the host while it is immunocompromised by the Lyme.  The co-infections can include Babesia, Erlichia, and/or Bartonella.
 
For some patients, the co-infection(s) may indeed be the ONLY infection(s) (i.e. Lyme may actually be cleared from the system, or never present at all – this can account for why we see so many false negatives in Lyme testing) – this is impossible to definitively determine clinically because the co-infection microbes can present with identical symptoms to Lyme (which are non-specific to begin with).  Generally, though, the co-infections can have some specific attributes:
-          Babesia: cherry angiomas (red dots) on the abdomen, issues with breathing (inability to take a deep breath or “air hunger”)
-          Bartonella: red streaks on the abdomen (like scratches), enlarged lymph nodes in the neck
-          Erlichia: not associated with specific attributes distinct from Lyme; sometimes presents with sharp, knife-like pain behind eyes
 
Are there definitive tests available?
No. Unfortunately the tests that do exist have an abysmally high false negative rate (i.e. they frequently say no infection is present when indeed there is one present).  The sensitivity of comprehensive testing is estimated at 40%.  To test for co-infections, separate tests need to be conducted for them.  The average cost of a comprehensive lab panel with the highly reputable lab IgeneX is approximately $1000 USD.  Statistically speaking, several of these would need to be run in order to definitively rule out Lyme in the face of a negative result (conversely, if one is “lucky” enough to get a positive result then that can be used to base treatment on).
 
 
In the absence of a positive lab result, what can we do?
We start with a “therapeutic trial”, meaning that we start treatment as if the patient has Lyme (and/or a co-infection, if symptoms suggest it) and see if their symptoms improve or change in a way that suggests we have the right diagnosis.  Indeed, this method typically shows us results one way or the other within about one months’ time (i.e. if the patient feels better it strongly suggests Lyme; if they feel no change it’s less likely to be Lyme) and is significantly less expensive than running the independent lab tests.
 
Are there any non-laboratory tests that can give diagnostic information?
Yes.  Specialized testing like Autonomic Response Testing as developed by Dr. Dietrich Klinghardt, MD (one of the world’s leading Lyme experts) can give diagnostic direction, as can related testing methods like applied kinesiology and Koren Specific Technique.
 
What are the treatment options?
It depends on who you talk to.  Lyme-literate medical doctors typically rely on antibiotic therapy as their primary method of treatment – this can be a combination of oral and intravenous administration.  These MDs get many fantastic results with their patients and have fully resolved many, many cases.  The antibiotic approach is oftentimes associated with periods of “die off” reactions which can lead to unpleasant symptoms, and treatment can sometimes take a long time (several months to a few years, on average).
 
Lyme-literate integrative doctors (either medical doctors or naturopathic doctors) take a somewhat different approach.  Ideally they like to see patients taking antibiotic therapy (assuming that antibiotics are a good therapeutic tool for the patient) while being supported with other anti-Lyme treatments and treatments to support the patient during the Lyme-killing process.  In doing so, patients are able to resolve the infection(s) faster, feel better sooner, and reduce the “die off” symptoms as much as possible.
 
Unfortunately, in some situations antibiotics are not an option (e.g. in Nova Scotia if there is no prescribing medical doctor then a treating naturopathic doctor cannot get access to antibiotics) and thus a non-antibiotic approach is the only option.  Indeed, this is virtually always the case for my Lyme patients and me; however we are still able to improve and eventually fully resolve symptoms without antibiotics (although, once again, we would rather have the antibiotics, too, if possible).
 
What are the naturopathic/integrative medical treatment options?
There are many.  The treatments that I have found to be most effective with my patients include:
-          IV therapy: combination of hydrogen peroxide (kills Lyme and co-infections) and nutrients (B vitamins, magnesium, etc. – to improve energy levels, pain, brain fog, etc.)
-          Anti-Lyme herbs: specific herbs have bacterial killing effects and boost the immune system to seek out and kill Lyme more effectively.  My favourite is Quintessence by BioPure, as recommended by Dr. Klinghardt; additional herbal compounds like artemesinin (for Babesia) and essential oil combinations (rizols) have a powerful synergistic effect against Lyme
-          Immune system enhancement/“waking it up”: Lyme has devised many ways to evade the immune system while still wreaking havoc on the body.  Herbs can help in the regard, but more advanced treatments are often required to really “wake up” the immune system and get it properly patrolling the whole body.  Two advanced treatments include:
o   Autonosode therapy: a simple, in-office procedure that vastly improves the ability of the immune system to scour the body’s connective tissues and nervous system for Lyme (places it frequently hides to evade the immune system)
o   Sinus/Tonsil Neural and Ozone therapy: in-office treatment of these areas with procaine and ozone strongly enhances overall immune system function and directly kills Lyme in two of its main reservoirs in the body (i.e. the sinuses and tonsils)
-          CCSVI (Chronic Cerebrospinal Venous Insufficiency) Protocol: can be done along with sinus/tonsil treatment to enhance blood flow to the brain (in a similar manner to how the Zamboni treatment helps patients with MS) – done as a treatment with procaine and ozone in-office
-          Adrenal Gland Support: our adrenal glands control our energy levels and get depleted in the face of stress.  Chronic Lyme is incredibly stressful on the body and thus the adrenals are virtually always depleted in these patients.  Support with strong doses of herbs and adrenal gland extracts help improve energy levels and mental function quickly.
-          Reducing EMF exposure: EMFs (electromagnetic fields) can significantly aggravate symptoms of Lyme, especially issues with brain fog and insomnia.  Reducing exposure during sleep is crucial to improve recovery time.
-          Dealing with other issues as they arise: in my experience, patients who are actively killing Lyme begin to have other issues arise.  Sometimes they start actively clearing heavy metals (indicated by developing headaches, a metallic taste in the mouth, aggravation by strong scents/chemicals, etc.) or clearing past emotional issues.  Sometimes old symptoms from years before come to the surface again.  As these issues arise they must be dealt with to help the Lyme to be cleared as efficiently as possible.
-          Other therapies: many other therapies can potentially be useful in anti-Lyme protocols, including bee venom therapy, homeopathy, treatments to boost natural killer cells, etc.  Ideally individualized testing is done using autonomic response testing or a similar technique to determine the ideal treatment protocol.
 
What is the take-home message?
Chronic Lyme is an incredibly challenging issue, made even more challenging by its lack of recognition in the conventional medical community.  Fortunately there are many concerned doctors who are willing to treat what they see, not just what a lab test tells them.  A great deal of support is available to patients who are suffering from chronic Lyme – we’re all working together to spread information and ultimately help people get well.  To the well-trained clinical eye chronic Lyme disease (and its co-infections) is an identifiable condition even in the absence of a positive laboratory result.  From there, effective and comprehensive treatment options are available. 

Dr. Bryan J. Rade, ND
Naturopathic Doctor

Lower Sackville Wellness Centre
546 Sackville Drive
Lower Sackville NS B4C 2S2
P: (902) 830-4615
F: (902) 252-3081
dr.bryanrade@gmail.com
www.bryanradend.com

Please view link and visit his website at:

http://bryanradend.com/index.php?news&nid=27

www.bryanradend.com

*** Dr. Rade is also giving a thorough discussion on Chronic Lyme disease at the Lower Sackville Wellness Center ~ 546 Sackville Dr., Lower Sackville, Nova Scotia on Tues, March 13, 2012 @ 6:30 pm.
To register Please phone Dr. Rades Reception desk @ (902) 830-4615 ***

Map of Lyme disease risk in the U.S.
For three years, more than 80 tick hunters combed sites throughout much of the U.S. with corduroy cloths to trap the insects. They were on the lookout for the black legged tick Ixodes scapularis. It is the main carrier of the bacteria that cause Lyme disease.
This new map reflects their findings and pinpoints areas of the Eastern United States where humans have the highest risk of contracting Lyme disease.
So far in Canada, Lyme disease has become established in parts of southern and southeastern Quebec, southern and eastern Ontario, southeastern Manitoba, New Brunswick and Nova Scotia as well as much of southern British Columbia.
Source: American Journal of Tropical Medicine and Hygiene

http://www.cbc.ca/news/health/story/2012/02/02/lyme-disease-tick-map.html?cmp=rss

SUTHERLANDS RIVER – A young county girl who is battling Lyme disease seems to be getting worse, says her mother.
Chelsey Livingstone-Rector, 11, was diagnosed with Lyme disease last spring, but it’s believed she’s had the disease since being bitten by a tick in Ontario when she was just two years old.
Her mother, Angela Rector, says Chelsey has been doing poorly over the past few weeks, and now it seems the disease has spread to her pancreas, causing alarming blood sugar levels.
“She hasn’t been feeling too hot in the last three weeks, she’s missed a lot of school,” Rector said. “The doctors are saying it’s attacking her pancreas now and she’s losing a lot of weight because she’s having a very hard time eating. We’ve had to put her on Ensure drinks because it hurts when she eats.”
In the last week alone, she’s dropped to just 78 pounds.
“It’s a sin, you don’t know what to do for her, and the doctors tell me that all I can do is what I’m doing right now until we get in to see the specialist,” she said.
The community is already starting to come together to support Chelsey and help the family raise funds to travel to the United States to see a pediatric Lyme disease specialist. Although Chelsey has insurance, her mother has learned it will not cover travel costs or any necessary hospitalization there.
The family is hoping to receive word shortly on when she can go to the U.S.
“We’re still waiting on word and we’re hoping we’ll hear within the next week,” Rector said. “The doctor has said he’s going to see Chelsey, he’s going through her charts now so he’ll have a plan in place beforehand so when we go it won’t cost as much when we get down there.”
Elaine Murphy, a friend of the family, is helping to organize two fundraisers to help the Rectors with the costs. She’s hoping the community will come out and show their support.
“This is something for a little girl, it’s a good cause,” Murphy said. “Anyone who wants to donate something or volunteer a little time, it helps a lot to try and get her there for the treatment she needs.”
The first will be a prize bingo held at Ward 1 Rec Centre in New Glasgow on Feb. 18, noon-4 p.m. Prizes are still needed, Murphy said.
The second fundraiser will be held a week later on Feb. 25 at the New Glasgow Legion. During the afternoon, 2-5 p.m., there will be activities for children, like face painting and treats.
“Where Chelsey is only 11, she can’t go to a benefit dance or anything, so this is something she can attend and the kids can come and hang out with her,” added Rector.
Then, in the evening, the legion will be the site of a benefit dance and silent auction, with doors opening at 7 p.m.
Volunteers are still needed for the children’s afternoon, said Murphy, and auction items are being accepted as well.
For more information, visit the facebook group – Help Chelsey Livingstone-Rector Get to USA for treatment.

See full story:

http://www.ngnews.ca/News/Local/2012-02-01/article-2883580/Lyme-disease-now-affecting-pancreas-of-11yearold/1

Published on January 22, 2012
French Connection performs during a benefit for Brenda Sterling-Goodwin

Topics : Trinity United ChurchHundreds of people turned out to Trinity United Church Sunday afternoon for a benefit for Brenda Sterling-Goodwin, who has Lyme disease.
The benefit included musicians, a silent auction and bake sale.
Money will go to help cover medical expenses associated with the disease.

See full story here:

http://www.ngnews.ca/News/Local/2012-01-22/article-2871169/Benefit-draws-hundreds/1

January 25, 2012

People who know Brenda Sterling-Goodwin have marvelled at her persistence as she tries and helps others to conquer Lyme disease.

They supported her over the past week during a benefit for her Sunday at Trinity United Church and during a presentation of a documentary on Lyme disease that she hosted last Thursday at the New Glasgow library.

Nearly 200 people attended the benefit at the church auditorium that raised more than $5,000 for Sterling-Goodwin and featured a silent audition, bake sale and live entertainment featuring numerous local musicians.

“People came out and supported Brenda,” said Jill Munro, who helped organize the event. “It was a good day.”

Sterling-Goodwin thanked those who attended the event and those who were unable to and still contributed to the event nonetheless.

“I cannot say thank you enough for all the support for this wonderful event,” she said. “All of you here have made it possible. I feel very blessed.”

She said the event has helped her reach more people who are discovering that symptoms they have experienced for years in some cases coincide.

“My mission to help others is like the wind in my sails,” she said.

More than 40 people attended the screening of the documentary Under Our Skin that examines the travails of Americans who have encountered the bacteria emitted by black-legged ticks.

It also outlined members of the medical profession who have widely diverging views on the disease’s prevalence and how to treat it.

Some Lyme doctors have either had their medical licences suspended or are fighting protracted legal battles to keep them.

See full story here:

http://www.pictouadvocate.com/2012/01/25/hundreds-support-benefit-to-aid-lyme-disease-mission/

Will update post soon with details how you can help.

Warmer winters bring tick-infested springs

Article by: KEVIN GILES, Star Tribune

Updated: January 20, 2012 – 10:47 PM

Disease-carrying pests don’t die off without extended cold snap.

“If enough ticks are able to find suitable conditions, they can survive from year to year and their populations expand,” said David Neitzel, an epidemiologist at the Health Department.
But just as warm winters can keep ticks alive, so can heavy snowfalls that protect them from harsh temperatures, Neitzel said. And that’s the contradiction — unusual warm weather this winter has ensured that even modest snowfalls melt quickly. Ticks also need wet conditions to survive.
“They’re more exposed so they can either freeze solid or dry out if they don’t have enough leaf litter,” he said. “Even if a bunch of them are killed, [their numbers] seem to recover.”
It’s that persistence that worries public health officials. Anyone who spends time in wooded and brushy areas should report symptoms such as fever and rashes to a doctor, Neitzel said.

See full story:

http://www.startribune.com/local/east/137802778.html

On December 12/2012 Canlyme printed this story …
http://canlyme.com/2012/12/12/misinformation-sent-to-all-nova-scotia-mlas-and-mps-by-chief-medical-officer-of-nova-scotia-robert-strang/ regarding a letter that was sent out to ALL MP/MLA’s regarding Lyme disease in Nova Scotia .  It seems I am not the only one upset about this letter.  One of the lines I was most upset with, because it rang so true, was not in the original “Strang Letter” , it was in the rebuttal from The Canlyme website…..
“Canadian Infectious Disease doctors Canada wide have refused in writing to see any patient that did not pass that flawed protocol “.
That sentence directly applied to me, as I too could not be seen here in Nova Scotia by Infectious disease, and I also know of others. I also have it in writing,  not once, but twice  !!!!!  I decided to enquire about the contents of the letter (which would be used to educate the public and squash public fear) but it was more like pulling teeth.  I emailed all 52 constituents to see what they thought. The responses were varied, to say the least. What I received was anything from no to yes, through a third party,  to pretty much ….. you may as well take a hike.  It will take awhile to get these posted…. but here’s a small taste.
——————————————————————————————————–

MLA for Lunenburg West (endemic jurisdiction Lunenburg and Queens Co.)

He is Ministerial Assistant to the Department of Health and Wellness.

From: ns_hottie@hotmail.com
To: gary.ramey.mla@eastlink.ca
Subject: Re: Lyme disease in Nova Scotia
Date: Mon, 17 Dec 2012 23:57:25 -0300
Dec 17, 2012
This note is in regard to Dr. Strang /Chief Medical Office (DHW) letter regarding Lyme disease. This letter was sent out to all MLA/MP dated November 28, 2012 . Could you please confirm that your office has received this letter from him.
Thank you in advance,
Ingrid
—————————————————————————————————–
From: ingrid
Sent: Wednesday, December 19, 2012 10:35 AM
To: gary.ramey.mla@eastlink.ca
Dear Constituent,
I sent you an email two days ago and have not had a response yet. Do you have someone that answers emails from the people that elected you?  As an elected member I would expect at least that. The only question I had, at that time, was if you received the letter from Dr. Strang/Chief Medical Officer of Health regarding Lyme disease?  Lyme disease is a province wide issue. However, now I am very dismayed that I have not received any response …..PLEASE RESPOND!!
Sincerely Ingrid
—————————————————————————————————-
From: gary.ramey.mla@eastlink.ca
To: ns_hottie@hotmail.com
Subject: Re:
Date: Wed, 19 Dec 2012 14:35:54 -0400
Dear Mrs XXXXXX :
I apologize for not responding sooner as I thought this was a hoax. Let me explain why.  It is addressed to Dear Constituent. I am the MLA for Lunenburg West, although technically I suppose I am  my own constituent. I have no idea if you are even a constituent of mine as you have not identified your home community, and I respond, as much as possible, to my own constituents first.   I get many e-mails per day along with many phone calls.  I try to respond to everyone as soon as possible , but events at this time of year often take me out of the office, and I am a bit slower at getting back  As I indicated, I thought the bizarre salutation made this a hoax.  I answer all my own e-mails, as I am the elected representative, and as such I am the one who should and does respond.  I am not sure why a two day response window would cause you to  be dismayed, but in answer to your question, I did receive a letter from Dr. Strang, and I have referred your inquiry to his office
Best Wishes for a Happy Holiday Season.
Gary
—————————————————————————————————–
From: ingrid
Sent: Tuesday, January 01, 2013 3:26 PM
To: gary.ramey.mla@eastlink.ca
Subject: FW: LYME DISEASE/HOAX/STRANG LETTER
constituent – a member of a constituency; a citizen who is represented in a government by officials for whom he or she votes; “needs continued support by constituents to be re-elected”

Attention: RE: LYME DISEASE/HOAX/STRANG LETTER
Tuesday Janruary 01, 2013
Dear Mr. Gary Ramey MLA Lunenburg West,
HOAX ????
WOW… JUST WOW !!!!
Thankyou very much for your note and addressing my inappropriate verbatim and usage of the word ” constitiuent”. It absolutly astounds me that someone with part of your Bio. Premier Darryl Dexter’s Ministerial Assistant for the Department of Health and a former board memeber of Bonnie Lea farm (so eleqauntly-I might add) took a full paragraph to address. Were you trying to be rude, belittling or were you just trying to avoid this issue of Lyme disease and the “letter” all together?
While I do not live in “YOUR” endemic area, Lyme disease is a serious Province wide issue!!!!
As being our Premier’s Ministerial Assistant I would assume that you would have been one of the first to have been privy to the letter “Lyme disease in Nova Scotia” by our Chief Medical Officer-Dr. Robert Strang, before it was sent out. I’m perplexed as to why you felt the need to address the “bizzare” salutation in great detail, rather than the important issue at hand. Why did you forward my inquiry to Dr. Strang’s office? Our Premier has first hand knowledge of the issues with Lyme disease in this province, have you spoke to him regarding Lyme disease? My question was to you Mr. Ramey, more importantly, what did you think of the letter?
Sincerely,
Ingrid
———————————————————————————————————————-
From: gary.ramey.mla@eastlink.ca
To: ns_hottie@hotmail.com
Subject: Re:
Date: Wed, 19 Dec 2012 14:35:54 -0400
Thank-you for your email.  I want you to know that my response to you was in no way meant to be condescending, belittling, or rude.  It is not in my nature to treat others this way, and conversely I do not enjoy being treated that way myself.  I reiterate that I thought because of the salutation that this e-mail was a hoax.  I also recollect there was something about the return e-mail address that I found strange, but I would have to go back and look at the original e-mail to check on what that was.
In any event, my role as Ministerial Assistant does not make me privy to discussions on health care policy in Nova Scotia on a regular basis, nor, in my role as Ministerial Assistant, am I consistently informed on all the issues that are the purview of the Department of Health and Wellness.  Policy discussions and health care practices are in the arena of the minister in consultation with experts in their respective fields, of which Dr. Strang would be one. In 2009, when our government was elected, we merged the Department of Health and the Department of Wellness together to form one.  As a result, the minister’s role was expanded due to the formation of of one ministry from two.  The role of the Ministerial Assistant is similar to that of a Parliamentary Secretary to a federal cabinet minister.  This means I often appear on behalf of the minister at an event, or deliver a speech on his behalf.  My role is not to formulate policy, or to be consulted or briefed on the myriad of health-related issues confronting the minister.  That’s his defined role.
I recognize that Lyme Disease is a health issue in our province and, specifically in my area of the province,—–  Lunenburg and Queens Counties. I read the letter from Dr. Strang and felt it was thoughtful, comprehensive, and clear.  I know this issue continues to receive attention at the department.  Not being an expert in this field, nor having a role to play that would be applicable, I forwarded your concerns to the individuals in government who would be most likely to professionally address this issue.  It is my duty to do this, as that is my role as an MLA.
I hope this clarifies my position on this matter.
Happy New Year
Warmest regards,
Gary
———————————————————————————————————————-
From: Lyme Ing <onesicklymie.realitycheck4u@yahoo.com>
To: “gary.ramey.mla@eastlink.ca” <gary.ramey.mla@eastlink.ca>
Sent: Tuesday, January 15, 2013 10:40 PM
Subject: LYME DISEASE IN NOVA SCOTIA
RE: LYME DISEASE IN NOVA SCOTIA
Dear Mr. Gary Ramey MLA Lunenburg West:
Thank-you very much for your email. The orignal intention of this email was to find out if you as an “MLA” had received the letter “Lyme disease in Nova Scotia” by Dr. Strang/Chief Medical Officer of Health dated November 28/2012 and WHEN ? It seems that as of today’s date not all MP/MLA’s have received it (some have received it through a third party). When did you recieve this letter directly from Dr. Strang’s office is the question? Please do not forward this question to Dr. Strang’s office (I have his email) as this question was not posed to him it was directed at you soley as your role as an MLA with Lunenburg being an endemic area, which is in your arena as an MLA.
Please note:
I have changed my email address from  ns_hottie@hotmail.com (the email address you found strange)  to  onesicklymie.realitycheck4U@yahoo.com maybe we can stay focused on the task at hand , and not skirt the issue.
Happy New Year,
Sincerely,
Ingrid
**** Still awaiting response…!!! ****
—————————————————————————————————–

Dartmouth East-Andrew Younger MLA

From: ns_hottie@hotmail.com
Subject: RE: Lyme disease in Nova Scotia
Date: Tue, 18 Dec 2012 00:05:22 -0300
Dec 17, 2012
This note is in regard to Dr. Strang /Chief Medical Office (DHW) letter regarding Lyme disease. This letter was sent out to all MLA/MP dated November 28, 2012 . Could you please confirm that your office has received this letter from him.
Thank you in advance,
Ingrid
————————————————————————————————-
From: ingrid (ns_hottie@hotmail.com]
Sent: December-18-12 1:29 PM
To: Office of Andrew Younger MLA
Subject: RE: Lyme disease in Nova Scotia
Do you have someone that responds to emails?
————————————————————————————————
From: info@andrewyounger.ca
To: ns_hottie@hotmail.com
Subject: RE: Lyme disease in Nova Scotia
Date: Tue, 18 Dec 2012 18:43:17 +0000
Yes Ms. XXXXXX, I respond to emails on behalf of Andrew’s office.
However, I wanted to check with Andrew about a response to your query.
This constituency office has never received any missive from Dr. Strang regarding Lyme disease, nor any other topic in recent memory. Neither has Andrew’s Liberal Party office (the caucus office) in downtown Halifax.
At this point in time, we have yet to find an MLA who is in receipt of this message from Dr. Strang regarding Lyme disease.
What we have received, is an email “in response to” Dr. Strang’s mystery message stating that Dr. Strang’s letter contains “some serious misinformation”. That email has been forwarded to Andrew, via this office.
We hope that answers your question.
Regards,
Patti Tabor
_______________________________________
Patti Tabor | Constituency Assistant
Office of Andrew Younger
MLA – Dartmouth East
73 Tacoma Drive, Suite 600 |
Dartmouth | Nova Scotia | B2W 3Y6
T: 902.406.4420 | F: 902.406.4421 | E: info@andrewyounger.ca
——————————————————————————————–

Vicki Conrad MLA Queens

Ingrid, on behalf of Vicki Conrad, thank you for your email and my apologies for not responding earlier.  We have received the letter from Dr. Strang and we have been advised that Dr. Strang will be addressed the inquiry in the new year.
Seasons’s Greetings & Happy New Year!
Judi Milne, Constituency Assistant
We Build Ships – check it out: www.shipsstarthere.ca
VICKI CONRAD, MLA Queens
Ministerial Assistant to Transportation & Infrastructure & Caucus Chair
PO Box 430, 43 Carten St., Liverpool, NS  B0T 1K0
902-354-5203, fax 1-902-354-5247, toll free 1-888-354-5203
www.vickiconrad.ca
——————————————————————————————
As a footnote (from Canlyme) :

Local MLAs hear requests for Lyme disease vigilance

NEW GLASGOW – Pictou County’s three MLAs and several county councilors got educated about Lyme disease from those suffering from the disease. They also received a long list of items the delegation wants instituted into Nova Scotia’s detection and treatment of the disease during a meeting on Monday at Justice Minister Ross Landry’s Pictou Centre constituency office. “We did our best,” delegation member Alice Lees said. “There are strong intentions and they’ve information that will be helpful.” Besides Landry, Energy and Natural Resources Minister Charlie Parker and Pictou East MLA Clarrie MacKinnon, municipal councilors in attendance included Deputy Warden Andy Thompson, Sally Fraser, Debi Wadden and Jamie Davidson. “We know Lyme disease is a serious and real problem,” Landry said. “The big thing is getting the medical and health communities and the public educated. We met to help assure that various departments are aware of this.” The delegation members want the Medical Act of Nova Scotia updated to ensure those with Lyme disease receive the same guarantee former Health Minister Maureen MacDonald asserted “that all Nova Scotians receive the best possible care from highly qualified and trained doctors.”


 

Chelsey Livingstone and her mom, Angela Rector, organize the many pills Chelsey needs each day as she battles Lyme disease. It’s a costly process that could take from one to three years. Jennifer Vardy Little – The News
Published on May 26, 2011

 

Mom blames poor tests that failed to diagnose Lyme disease

Topics :
Department of Health , Sutherlands River , Ontario , Port Hawkesbury

SUTHERLANDS RIVER – For 8 1/2 years, Angela Rector brought her daughter to doctor after doctor, looking for answers.

Chelsey Livingstone, 11, lives in pain. She describes joints that ache so badly it keeps her up at night and a sharp pain in her stomach.

“It feels like someone’s stabbing me in my belly,” she says softly.

From the time she was a small child, she’d call out to her mother as she lay in bed at night, and in the time it took Rector to get across the hallway, she’d find Chelsey lying there, staring unresponsively at the ceiling with blue lips. Doctors thought she had epilepsy at first, but ruled that out, instead calling the nightly events “episodes.”

Doctors didn’t believe Chelsey when she said how bad the pain was, either.

“You know how they always ask how bad the pain is on a scale of one to 10? She’d say a 15, and they said that was impossible,” said Rector.

She was tested for rheumatoid arthritis, bladder infections, Crohn’s and irritable bowel, but all the possibilities were rejected. Eventually, says Rector, physicians at the IWK suggested it was all in Chelsey’s head and gave her a book on ways to cut back her stress levels.

Rector wasn’t willing to give up, however. All along, she begged the doctors to consider Lyme disease. When Chelsey was just 2 1/2, the family was living in Borden, Ont., and Rector believed her daughter had been bitten by a tick.

See Story here:

http://www.ngnews.ca/News/Local/2011-05-26/article-2538390/Child’s-illness-mystifies-doctors/1

COUNTY – Five Lunenburg County patients are now suddenly panicked six months following tests for Lyme disease that had come back negative.

 Provincial medical officer Dr. Robert Strang said five people from the South Shore were told they did not have Lyme disease, but Health Canada’s lab in Winnipeg had made a mistake and the tests were positive after all.

 A man from Mahone Bay was one of the five South Shore people who received the wrong results. He does not want his name used. In an interview, he said he went to his family physician with a rash on his stomach that seemed to be growing.

see more here:

http://www.southshorenow.ca/archives/2011/030811/news/index029.php

Canada’s National Microbiology Laboratory in Winnipeg discovered a mistake in 24 test results last month. Of these, 16 people were treated, two never fell sick enough to seek treatment, one is going to get treatment, and there’s no information on the other five.

“There are 24 individuals who we reported out falsely, negative test results,” Dr. Frank Plummer, scientific director of the National Microbiology Laboratory said Thursday from Mexico City. “They should have been reported as positive.”

The people are in Manitoba, Quebec and Nova Scotia, the Public Health Agency of Canada said.

Read more here:

http://www.cbc.ca/news/canada/story/2011/02/24/lyme-disease.html

written by Dr. C. Ben Boucher, BSC, MD

What has happened over the past 20 years in the United States, and for a shorter time in Canada, regarding Lyme disease reminds me of what I have experienced in both wellness and chelation therapy. The hesitancy to diagnose and treat, the development of overly strict guidelines, and the intimidation of those who who suspect and would like to treat infections is like déjà vu.

This presentation is intended to inform the public, physicians and media about what I have learned regarding tick-borne diseases. My education has come from articles, books, a workshop by ACAM, and a conference by the International Lyme and Associated Diseases Society (ILADS). More importantly, my education has resulted from listening in great detail to many patients whose lives have been affected by these infections

Read more here:

http://thewellnesscentre.com/PressReleases.aspx

Well its August 11, 2010 and I am on route to see my first Lyme Literate Doctor. I was bit in July of 2008, removed the tick from the crater… it had now bore into my arm and I also had the tell tale bulls-eye rash. However the Elisa test came back negative and based on that … the last four Doctor’s dismissed my symptoms (over 50) and did not treat me.

So two years into this nightmare and I am finally on route. I didn’t sleep well…and I lay awake most of the night… wondering if I should write a
” If I die during treatment… I will not hold you responsible letter” to take with me… I decide against it…but would in a heartbeat.  The drive to the Doctor’s is 3.5 hours away. Exhausted already and emotionally drained I start this journey, it’s 6:30 am.  Thank You Wanda for letting me use your car.  (I can’t say Thanks enough)

I had great confidence in my new Doctor, Dr. Ben Boucher.  I had heard many good things about him from other Nova Scotian’s seeing him.  I was sure he would be able to evaluate me correctly with or without a positive Elisa test.  Surely, just in my spacey Lyme look alone.  However did wish on the way up I had one visible symptom that could prove to him, and so he could confirm to me, that I really had this. I got sick right after the bite, been sick since and had the rash.  I guess you have to be careful for what you wish for.  By the time I arrived at his office… my knees and ankles were full blown swollen and red. (Chronic Lyme Arthritis) I’m sure my Mom was trying to answer my prayers, Mom’s almost never fail.           

 Good I thought he will be able to see this. I only broke into full blown tears once on my way up, when the song “Sarah” by Rascall Flats came on.  I get out of the car behind the office in the parking lot, try to stretch my legs out so they will get me in the office.  I noticed a few cars in the parking lot…but one stuck out. It was a rather nice vehicle, (not over the top or anything)  I guessed it was my Doctors. It had a license plate that was a Canadian flag with a US flag sheen overlay on top of it.  Already emotionally drained I started to sob, tears just streaming down. I thought about my US Lymie friends that I first connected with on facebook, a border separates us, but we are all the same. We all suffer, hurt, and hope together. I really dont know how I would have gotten through this far without them.  When all (lOl @ all)I thought I had was Lyme Disease and totally clueless about much of it. And once I was complaining about my splinntering tibia’s and intensely sore soles that hurt to put weight on, one of these knowledgable souls directed me to have a look at the Bartonella symptoms. I have also connected with many Maritimers and other Canadians who are going through the exact same thing, sadly.  The names of all these people just went through my head…sickened that I could rhyme off 50 names no problem. Note: I have over 400 people with Lyme Disease on my facebook, and could easily just keep adding more and more.

I’m wondering if this Doctor could see me standing there doing this from one of the windows. He must think I have totally lost it. I re-open the door to the now locked car because I have to get myself together before I go in there. I open the door, set my glasses on the seat, wipe my eyes and then the Doctor comes out with a file. I thought great I’m busted he seen me.  He”s coming to get me! He called another patient that was also getting out of their car and called them by name and says your next.  I thought, I heard of Nova Scotia hospitality but this is surreal.  I stood there with my mouth open, stunned ! He must have noticed … he says “this doesn’t happen often .. I know these people”…and he kind of laughed and I did to. Anyway… I just wanted to get back to this license plate that had me so fixated. And I did for another couple of minutes. Then realized I had locked my glasses in the car.

I make my way into the office (I was in the waiting room when he called me in …lOl) Nothing stuffy about this guy…he introduced me with his first name.  I felt immediatly at ease.  On the sheet I had to fill out before hand, I had to check off what symptoms I had.  There is about 8 pages to this… full pages.. many, many symptoms with Lyme Disease and the nasty co-infections of Bartonella and Babasia.  I had asked other Dr.s to do this…to go over the symptom list that I downloaded from the ILADS site.  So I could go from head (which was also tender) to toes.  There is no way I could bluff having this (who would want to)…with all these symptoms… and remember when and how long I had that.. no way I could remember all this. Immediatly I showed him my legs. Look-Proof !! He wasnt so concerned with what was on the outside … he was more concerned with what was going on .. on the inside… and I knew I had the right Doctor.  I have not felt like I was under good care until now in over two years.  He diagnosed me with Lyme Disease and Bartonella… not sure on the Babasia the meds I will be taking will worsen the symptoms…we’ll find out then.  Some people are devastated to hear they have this dreadful disease … I only felt relief.  I have finally been diagnosed.  I have found a Doctor that Nova Scotia is so lucky to have. If it were not for him, I would have to go the U.S for treatment. I would never in a million years be able to do this…not a single doubt in my mind…not one !!! He risks his license to treat patients as the CDC follows the IDSA guidelines… I am so overcome with emotion that he would do this for little ole me.

At the end of my appointment, he says “Do you have any questions?”  I said “Oh ya about 40″… I also have the stunned off in space lymie look. He says “Did you forget them all?’ I said “yes”. He said “OK I’ll see you back here next appointment.” He totally understood!!!

I leave feeling incredibly blessed and with a new sense of hope.

Bless you, Dr. Boucher, Bless you !!!!! 

Bless us all…. ing XO

www.pictouadvocate.com

Lyme disease is called the great impostor as it is often misdiagnosed or undiagnosed as some other condition. I feel certain there are many people who may fall into this category here in Pictou County. For more information check out the web site www.canlyme.com.
If our pets can have Lyme why not us? Ticks are not fussy who they choose for a blood meal.
This is a growing problem that needs to be recognized; education is the key. How can you do something about something you know nothing about?