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Submitted by Fran Zell on Sun, 01/29/2012 – 9:10pm
 It has the makings of a John LeCarré thriller:  A debilitating, potentially deadly, infectious disease carried by an insect the size of a poppy seed is spreading across the land. The medical establishment insists that everything is under control and that all these “sick” people are slackers or need psychiatric help. A few doctors—just a few—believe the people are really sick, and treat them according to guidelines not approved by insurance companies. One such doctor gets people in wheelchairs walking again, gives bedridden folks a new lease on life. Sick people flock to him from all over the land. He has saved many lives, and never harmed a patient. Yet one day his license is summarily suspended. There are not enough other doctors in the land to treat his many patients.
This is a story about that doctor and a state Medical Examining Board that has not always looked kindly on practitioners who treat “outside the box.” The disease is real. It’s called Lyme, and by some expert accounts, it’s an epidemic. The place is Wisconsin. But it could happen almost anywhere.

See full story:

http://uppitywis.org/blogarticle/wisconsin-lyme-doctor-gets-reprieve

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/

REMOVE OUTDATED IDSA GUIDELINES FROM NGC!
Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.

The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.

This is wrong because:
The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.Sign the petition to urge:
The NGC to remove the guidelines as its listing rules require.The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease.

Please fill in the information below and click on “Submit Petition”. All fields are required.

If you are in Canada or any other Country…pick your Country first, then address will work. You do not need to have Lyme disease to sign.

Please sign and view here:

http://www.lymedisease.org/petitionscript/index.php

Top 100 Stories of 2011 #90: Chronic Lyme Patients Validated?
A new study uncovered biomarkers for Lyme disease symptoms that persist even after treatment.
by Katie Palmer From the January-February special is
sue; published online January 5, 2012

iStockphoto
Patients with chronic fatigue syndrome and post-treatment Lyme disease syndrome (in which symptoms persist after antibiotic treatment) have spent decades fending off charges that their debilitating exhaustion and cognitive problems were simply imagined. But a study released last February provides tangible evidence that their conditions are real and distinct entities.
Immunologist Steven Schutzer of the University of Medicine and Dentistry of New Jersey examined samples of cerebrospinal fluid, the clear liquid ?that surrounds the brain and spinal cord, from patients with each syndrome. In identifying the contents of that fluid, he documented different sets of proteins for each group of patients, potential biomarkers that distinguish between the two ?conditions and healthy controls. Schutzer revealed the marker proteins by removing common, unrelated proteins like albumin and immunoglobulin from the spinal fluid before his analysis. “That lets the smaller proteins—the potential biomarkers—not get obscured,” he says. “At least now we know we’re not just speculating about the differences between chronic fatigue syndrome and post-treatment Lyme.”

Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection.

“Our studies do however offer proof of the principle that intact spirochetes can persist in an incidental host comparable to humans, following antibiotic therapy. Additionally, our experiments uncover residual antigen associated with inflammatory foci.”

Embers ME, Barthold SW, Borda JT, Bowers L, Doyle L, et al. (2012) Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection. PLoS ONE 7(1): e29914. doi:10.1371/journal.pone.0029914

Abstract

The persistence of symptoms in Lyme disease patients following antibiotic therapy, and their causes, continue to be a matter of intense controversy. The studies presented here explore antibiotic efficacy using nonhuman primates.

Rhesus macaques were infected with B. burgdorferi and a portion received aggressive antibiotic therapy 4–6 months later.

Multiple methods were utilized for detection of residual organisms, including the feeding of lab-reared ticks on monkeys (xenodiagnosis), culture, immunofluorescence and PCR.

Antibody responses to the B. burgdorferi-specific C6 diagnostic peptide were measured longitudinally and declined in all treated animals.

B. burgdorferi antigen, DNA and RNA were detected in the tissues of treated animals.

Finally, small numbers of intact spirochetes were recovered by xenodiagnosis from treated monkeys.

These results demonstrate that B. burgdorferi can withstand antibiotic treatment, administered post-dissemination, in a primate host.

Though B. burgdorferi is not known to possess resistance mechanisms and is susceptible to the standard antibiotics (doxycycline, ceftriaxone) in vitro, it appears to become tolerant post-dissemination in the primate host.

This finding raises important questions about the pathogenicity of antibiotic-tolerant persisters and whether or not they can contribute to symptoms post-treatment.

http://www.plosone.org/article/fetchArticle?articleURI=info%3Adoi%2F10.1371%2Fjournal.pone.0029914

ngnews.ca/News/Local/2011-12-05/article-2826047/Girl-with-Lyme-disease-needs-more-intense-treatment/1y

Girl with Lyme disease needs more intense treatment

Published on
December 5, 2011

SUTHERLANDS RIVER – Angela Rector started to cry when she looked at an assignment her daughter, Chelsey Livingstone-Rector, brought home from school. Chelsey, 11, had been asked to write a letter to Santa in French for a class. The only thing she wanted for Christmas, she wrote, was to get better.
“She didn’t ask for any toys. She just wants to get better. It’s enough to break your heart,” Rector said.
Chelsey has Lyme disease, which she contracted when she was just two years old after being bit by a tick in Ontario. She lives with intense pain daily and barely has energy to do things she once loved to do. Just waking up and getting out of bed in the morning is an ordeal. Her short-term memory is shot – she sometimes forgets where she’s going and has to have a helper with her at school and her grades are starting to drop because of her health. She pops more pills in the run of a day than an addict.
“Sometimes it seems like all I do is take pills,” said Chelsey with a sigh, adding that at least they’ve managed to juggle her medications so she doesn’t have to take them at school. “People stare at me, when I take the medicine at school.”
But she’s still not getting better, says her mom, and they’ve recently added two more medications to her daily routine. The new pills are so strong that Chelsey needs blood work every few weeks to test her liver function because the medication could cause damage to it.
“It’s a risk we’re willing to take at this point,” Rector says.
Chelsey has to fight to keep her weight up – she just hit 80 pounds, a major achievement, since it dropped to 58 pounds at one point – and has no appetite for her favourite foods.
It’s reached the point, Rector says, that Chelsey’s doctor has decided to send her to see an expert on Lyme disease in children based in Connecticut. It’s hoped they’ll be able to secure an appointment before the spring.
That’s going to be pricey for the family, who already shells out between $800 and $1,000 a month for Chelsey’s various medications.
Her insurance will only cover prescriptions and won’t pay for the vitamins and supplements she needs and they have told the family that they will not pay travel costs to the U.S. or for any hospitalization Chelsey may need while there.
It’s possible, Rector said, that Chelsey may have to do an IV therapy, which could be as intensive as a 24-hour-a-day, seven-day-a-week regime.
“I don’t know where we’ll get the money to go, but we have to,” Rector said. “I’ll find somebody, somewhere, to fix her. I have to. That’s my child.”
The only thing she has going for her right now it her age, her mother adds.
“The doctor told us to be glad she’s so young,” Rector said, her voice breaking. “She has her youth on her side. Her heart beats between 140 and 160 beats per minute at rest, and has ever since she was bitten. If she’s older, there would’ve been more wear and tear on her heart.”
Chelsey, who has been living with the disease for nine years now, has reached the point where she’s considered to have chronic Lyme disease – and that means that there may be little hope for a cure in her case.
“They’re saying that once you reach the chronic level, you can get treated, go in remission, and every once in a while it could flare up. It could be 30 years down the road or three years,” Rector said.
But still, the family hasn’t given up hope for a Christmas miracle.
“We’re hoping against hope she doesn’t go into remission and that she’s cured,” Rector said.

 

There is a lot to like about the Virginia Governor’s Task Force on Lyme Disease findings, which were unanimously adopted on June 30th after a number of public hearings. The report totals 19 pages and it is remarkably balanced. Congratulations to all involved! I want to share with you what I like about the report by highlighting key points from the findings on Diagnosis, Treatment, Public Education and Prevention, and Children.

I have excerpted the most important components of the report in my opinion and have left the section titles and paragraph numbers intact for those wanting to follow along with the full report, which you can download at the bottom of this post.

[W]e make the following specific findings and recommendations based on the testimony that we received from our hearings:

See more here:

http://www.lymedisease.org/news/lymepolicywonk/766.html

Ally Hilfiger, the now 26-year-old daughter of fashion designer Tommy Hilfiger, as had a lifetime of health problems since being bitten by a tick at age 7. Now she advocates for better research and treatment of Lyme disease.

From Greenwichtime.com:

Hilfiger’s experience with Lyme far from fashionable

Lisa Chamoff, Staff Writer
Published 09:50 p.m., Monday, March 28, 2011
Ally Hilfiger may have a surname synonymous with fun and youthful style, but for years the part-time Greenwich resident struggled with pain that left her feeling far older than she was.

While growing up, the now 26-year-old daughter of fashion designer Tommy Hilfiger went to several doctors, who diagnosed her with everything from arthritis to growing pains. Though Hilfiger was bitten by a tick at age 7, the insect tested negative for Lyme disease, as did later tests doctors performed on her. Some test results were “borderline positive,” she said.

ADVANCED TOPICS IN      

LYME DISEASE

DIAGNOSTIC HINTS AND TREATMENT

GUIDELINES FOR LYME AND OTHER

TICK BORNE ILLNESSES

 

Sixteenth Edition

Copyright October, 2008

JOSEPH J. BURRASCANO JR., M.D.

Board Member,

International Lyme and Associated             

Diseases Society

See Guideline here:

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

The Hydrogen Peroxide & Epson Salt Detox Bath is one of my absolute favorite bath therapies. It is the first thing we do for our own family whenever we feel we are developing a cold or illness. Not only does it detoxify the body and relieve pain, but it seems to also stop many infections quickly and help the body regain balance. Through medical studies, this therapy has been shown to relieve pain that did not even respond to narcotic medicines.

You will need:

4-6 cups Epsom Salt (Magnesium Sulfate)

32-64 fluid ounces of Hydrogen Peroxide (3%, as found in many grocery stores)

2-4 tablespoons of Ginger (freshly grated preferably, wrapped in a thin piece of cloth or in a tea ball. An old piece of nylon hose also works well).

**Do not use if pregnant**

Read more here:

http://www.drjerniganblog.com/articles/recommendations/820

Vancouver Sun August 23, 2010
 

 

Re: Controversy with a bite; People with Lyme disease say they can’t get treatment. Health officials say they don’t need it, Aug. 13

Stories like Erin Ellis’s have the possibility to change lives, as it was only a newspaper article that eventually led to my young daughter’s undiagnosed, degenerative illness being correctly diagnosed as neurological Lyme disease. Of course, like many of the individuals in the article, she had to go to the U.S. to be diagnosed and properly treated. My daughter became ill after a visit to Vancouver Island, in 2007.

Read more: http://www.vancouversun.com/health/Canadians+with+Lyme+disease+left+fend+themselves/3430585/story.html#ixzz0xiK7ZwD7

 “The doctors have a big apology to give the general public,” he says. “Infectious disease doctors don’t even believe that chronic Lyme disease exists. Their knowledge is way, way behind.”Even if doctors are convinced a patient has Lyme disease, they are reluctant to treat it if it has advanced beyond theinitial stage that requires only a few weeks of antibiotics, says Murakami.“Doctors in Canada are petrified to talk about Lyme disease,” he says.

http://www.vancouversun.com/

Tuesday, July 6, 2010

By David Cubberly, Special to Times Colonist
 

 

It’s astounding that a single Victoria veterinarian sees more Lyme disease in dogs yearly than are “confirmed” by the Centre for Disease Control for humans across B.C. (“Tests spot tick-borne disease in retriever,” June 26).

How can it be that we see only four to six cases a year of Lyme in humans if one vet sees a case a month of tick-borne disease in dogs (and most often Lyme)?

I hope the standard of care given Annie the retriever will one day be available to people in B.C. Right now it’s not. Annie’s vet suspected tick-borne illness, recognized the need to test for Lyme disease and knew enough to also test for other tick-borne illnesses.

Humans come to doctors with known symptoms of tick-borne illness, yet often face incomprehension or worse.

VANCOUVER – What if you picked up a crippling bacterial disease, but your doctor says it’s virtually impossible you have it? Or the doctor agrees you’re sick, but won’t treat you for fear of being drummed out of the profession?

Lyme disease patients in British Columbia say that’s what’s happening to them, and they’re being forced to look outside the mainstream medicalsystem for help.

While health officials say a few hundred Canadians contract Lyme disease each year, patient advocates claim that’s a drastic underestimate.

They say they’re given inadequate tests, denied medical treatment or told something else is causing the muscle and joint pain that leaves them unable to walk. And the few doctors willing to treat them with long-term antibiotics — sometimes administered for months intravenously — fear repercussions from their licensing bodies.

Read more: http://www.vancouversun.com/health/People+with+Lyme+disease+they+treatment/3397141/story.html#ixzz0x4eRzKxU