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Recent press release from CDC who’s motto is “24/7  saving lives and protecting people” !!

http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html

…and it’s getting considerable attention…

http://lymedisease.org/news/touchedbylyme/cdc-lyme-number-coverage.html

TOUCHED BY LYME: “300,000? number catches media’s eye

21st August 2013
When the CDC bumped its estimate of annual Lyme cases from 30,000 to ten times that, it made the evening news.

I blogged last week about the unprecedented wave of recent media coverage about Lyme disease. Turns out, we hadn’t seen nothin’ yet.

On Monday, August 19, the CDC announced that it had raised its official estimate of how many cases of Lyme disease are diagnosed each year, from 30,000 to 300,000.  (No matter that way back in 2004, the CDC stated on the record that official numbers were likely underreported by a factor of 10. Suddenly, putting that big number—300,000—in an official government press release made the news media sit up and take notice.)

All the major news outlets carried the story, some of them going into deeper detail than others. Here are links to a sampling if you want to check them out yourself.

Boston Globe

Poughkeepsie Journal

PBS Newshour

NBC Virginia

CBS Chicago

San Francisco-area TV station KTVU

The New Yorker blog

In addition to a news story, the Poughkeepsie Journal (in New York state) ran an editorial entitled “Lyme fight must go beyond change in numbers.” In addition to having more accurate reporting of cases, the newspaper suggests a number of changes:

That would include providing doctors with more protections if they are treating long-term cases of Lyme. It also would include establishing a federal advisory committee to ensure that all medical points of view are being represented before public health policy decisions are reached in relation to Lyme.

Sound proposals have been offered for years, but little action has been taken. Armed with new numbers, advocates must continue the fight for a better and broader fight against Lyme.

Hear, hear.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.

- See more at: http://lymedisease.org/news/touchedbylyme/cdc-lyme-number-coverage.html#sthash.VBV9I5Gl.dpuf

Seffernsville resident goes undiagnosed for two years

by Paula Levy

After two years of being ill, Shaelene Robar, Seffernsville, has been diagnosed with Lyme disease. The 15 year old's mother, Gail, has been advocating on her daughter's behalf.

It took two years for 15-year-old Shaelene Robar of Seffernsville to get a diagnosis and begin treatment for Lyme disease. The girl’s mother, Gail Robar, would not give up advocating for her daughter until she received answers and treatment.

 In December of 2008, Shaelene suddenly became ill. She and her family thought her illness was simply the flu. But the body aches and fever continued long after a normal flu illness would have cleared.

 ”The doctor kept saying that she would just be better, that it was a virus and it would just go away,” said Gail.

 But the symptoms would not go away and Shaelene began to become more and more ill. Over the coming months her fatigue, nausea, dizziness and now stomach pain intensified. Her mother took her to see doctors and specialists but no one could pinpoint the cause of Shaelene’s illness.

 Gail said during that time Shaelene was misdiagnosed with multiple sclerosis, chronic fatigue syndrome, Crohn’s disease, figbromyalagia and a mental illness. No treatments for these diseases helped and over the course of nearly two years, Shaelene kept getting sicker and sicker. She was also once thought to have anorexia because the teenager had lost over 30 pounds.

Shaelene said she had to drop out of school in Grade 8 because she was unable to cope with the extreme fatigue, dizziness and pain. This year she is supposed to be attending Grade 10 but she was only able to go to school for five days at the beginning of the year.

 ”I’m nauseous and I’m too weak to even move half the time,” said Shaelene.

 Gail said she realized that Shaelene had been bitten by ticks the summer before she became mysteriously ill. Her mother noted since the Robars do not live in an area that has the type of ticks – deer or blacklegged ticks – which are known to carry Lyme disease, at first Lyme didn’t seem possible. Gail said the ticks in their area are dog ticks, but now she is convinced that they too can transmit the bacterium that causes Lyme disease.

 The Public Health Agency of Canada maintains that blacklegged ticks are the only carriers that can transmit the bacterium that causes Lyme disease.

 Research scientist Dr. Robbin Lindsay said in Canada, the blacklegged tick and the western blacklegged tick are the types of ticks known to transmit Lyme disease to humans.

 ”While there have been several scientific research studies demonstrating that on rare occasions other types of ticks including the dog tick and insects like mosquitoes, fleas and certain biting flies can be infected with the bacterium that causes Lyme disease, they are not infectious and cannot transmit the bacteria to humans,” said Dr. Lindsay.

 Despite not having the well-known carriers of Lyme disease in her backyard, Shaelene was clearly ill. And Gail maintained that her daughter had contracted the disease. Her physician screened the young woman for Lyme disease. But that test proved negative. Lyme disease tests are first screened in Nova Scotia. Only those who screen positive are sent for further testing to the national lab in Winnipeg. Gail said the screening test is not reliable.

 ”The test is not reliable whatsoever. Those people that don’t test positive are out of luck,” she said.

The unreliability of the test is also maintained by Jim Wilson, president of the Canadian Lyme Disease Foundation.

 ”The present testing methods used were shown to be faulty,” said Mr. Wilson, quoting a January 2011 study. “It has been misdiagnosed as everything from multiple sclerosis, to chronic fatigue, Parkinsonism, irritable bowel syndrome, various forms of arthritis, psychiatric issues, heart conditions, and on and on. Canada just happens to have the highest rates in the world of these diagnoses but very little Lyme.” The foundation believes that Public Health is underestimating the burden of Lyme disease in Canada.

 Still convinced that Lyme disease was the culprit for her daughter’s illness, Gail continued to advocate on her daughter’s behalf. She took Shaelene to Port Hawkesbury to see a family physician who is known to treat patients suspected of having Lyme disease. He was contacted but did not return calls. However, through this physician, Gail paid $500 to have her daughter’s blood work sent to American laboratory IGene-X Inc.

 That test came back positive. But even though Shaelene has a positive diagnosis, it is not accepted in Canada because the laboratory is not a government-run lab.

 Gail said now that Shaelene finally has a diagnosis after two years, she is currently being treated with antibiotics by the physician in Port Hawkesbury. Shaelene said this course of antibiotics began in December and she has some improvement.

 ”I’ve been able to eat a lot more,” said Shaelene. But the teenager is still weak. Her mother expects it will take some time before Shaelene is able to return to a normal life.

 The Public Health Agency’s website states there are several antibiotics which can treat the illness but the sooner treatment starts, the better. In addition, it states that people with certain neurological or cardiac problems may require intravenous treatment and patients diagnosed in the later stages of the disease can have persistent or recurrent symptoms requiring a longer course of antibiotic treatment

The symptoms of Lyme disease usually happen in three stages. The first sign of infection is usually a circular rash which occurs in about 70 to 80 per cent of infected people. It begins at the site of the tick bite after a delay of three days to one month.

 Other common symptoms include

 * fatigue

 * chills

 * fever

 * headache

 * muscle and joint pain

 * swollen lymph nodes

 If untreated, the second stage of the disease can last up to several months and include

 * central and peripheral nervous system disorders

 * multiple skin rashes

 * arthritis and arthritic symptoms

 * heart palpitations

 * extreme fatigue and general weakness

If the disease remains untreated, the third stage can last months to years with symptoms that can include recurring arthritis and neurological problems.

 -The Public Health Agency of Canada

 

posted on 03/15/11

First study on birds as hosts of Lyme Disease

09.01.2013

Researchers at the University of Coimbra in Portugal lead the first study on the role of birds as reservoir hosts of the bacterium that causes Lyme borreliosis. The blackbird is a major reservoir host of the bacterium Borrelia burgdorferi s.l., responsible for Lyme disease – a disease that, if not treated at an early stage, causes severe lesions in the neurological, dermatological and articular systems.

This is the main conclusion of the first study in Portugal focused on the role of birds as agents for spread of infectious disease and as a reservoir of the bacterium Borrelia burgdorferi s.l., which is maintained in nature by various groups of vertebrates, including birds and some species of mammals and reptiles. This bacterium is transmitted by ticks, especially Ixodes ricinus.

Funded by the Foundation for Science and Technology (FCT), the study was developed over the past three years by a team of five researchers from the University of Coimbra, Center for the Study of Infectious Disease Vectors and the Dr. Ricardo Jorge National Institute of Health and the University of Neuchâtel (Switzerland).

Lyme disease, whose incidence is particularly high in the temperate regions of the northern hemisphere, was discovered for the first time in Portugal in 1989, and the first case was diagnosed in the region of Évora. Since then, about 35 new cases occur annually.

Although the incidence of disease is low in Portugal, “it is important to be informed about the risk of transmission of this disease and how to prevent it because the diagnosis is difficult due to the fact that early symptoms are similar to other diseases. This research provides valuable information to define the areas of risk and factors that influence the emergence of diseases transmitted by ticks and possibly prevent disease outbreaks”, states Cláudia Norte, coordinator of the study, which has already been published in international journals Environmental Microbiology and Experimental Applied Acarology.

Moreover, the researcher continues, “More and more people travel to other countries, including in areas where prevalence is high. Information is essential to take proper care”. “Thus”, she advises, “The use of light-colored clothes for a walk in the countryside or in the woods, where there are ticks normally, and looking to see if any tick is lodged in the body are a good idea. If so, remove it as soon as possible because the bacterium takes a few hours to pass effectively to a human. After the bite, if the disease is not properly treated with antibiotics at an early stage, bacteria can spread throughout the body and cause serious injury at neurological, cardiac and articular levels”.

The study also allowed the identification of a new strain of bacterium in Portugal – B. turdi – comprised by the capture of birds abundant in Portugal (about 20 species) for collecting blood samples and other tissues and ticks which were parasites on these birds. These samples have been evaluated at the molecular level to verify that  they were infected with the bacterium Borrelia burgdorferi s.l.

Plants were harvested at Tapada de Mafra and Mata do Choupal, monthly, for one year to assess seasonal variations in the abundance, distribution and infestation of ticks. With this approach, the researchers obtained information on what types of birds contribute most to the maintenance of different species of ticks and of course to the pathogens that may be carried.

See Article here:

http://english.pravda.ru/science/tech/09-01-2013/123426-study_birds-0/

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.”