Archive for the ‘Activism’ Category

Congressman Smith & The National Lyme & Tick-Borne Diseases Control & Accountability Act of 2018

https://chrissmith.house.gov/news/documentsingle.aspx?DocumentID=401130

Press Release

Chris Smith and Collin Peterson Push New, Historic Lyme Disease Legislation

Legislation Strengthens Treatment, Prevention of Tick-Borne Diseases

Washington, May 18, 2018 | Matt Hadro ((202) 226-6373)

Reps. Chris Smith (R-NJ) and Collin Peterson (D-MN) are pushing bipartisan legislation to create a new national strategy for Lyme disease and strengthen treatment and prevention of Lyme and other tick-borne diseases during May, Lyme Disease Awareness Month.

“So many patients suffer from the debilitating effects of this disease that persist for years, especially if not detected early, while being told that their illness does not exist,” Rep. Smith said. “The time is now to unify our efforts in treating and preventing Lyme disease and make sure they have all the needed federal funding and support that is necessary. Everyone must be involved in this collective effort, from doctors to federal officials to patients and their families.”

The new legislation, HR 5878, the National Tick-Borne Diseases Control and Accountability Act, which was introduced on Friday, creates a whole new structure—the Office of Oversight and Coordination for Tick-Borne Disease—to oversee efforts by the U.S. Department of Health and Human Services (HHS) to prevent and treat Lyme disease. The office would be charged with ensuring collaboration between the various departmental efforts.

HR 5878 also calls for a new national strategy on tick-borne diseases, and requires the HHS Secretary to report to Congress on federal efforts to diagnose and treat Lyme and on how best to foster collaboration between federal tick-borne disease programs.

“Furthermore, we must remember that the disease is vastly underreported,” Smith said. “There are more than 30,000 reported cases of Lyme each year, but the number of diagnoses is likely around 300,000 according to research cited by the Centers for Disease Control (CDC).”

New Jersey in 2017 had its highest number of reported cases of Lyme—5,092—since the year 2000. Monmouth County had the third-highest number of reported cases of any county in New Jersey with 550 cases reported.

Pat Smith, a Wall, N.J. resident and president of the Lyme Disease Association (LDA) based in Ocean County, N.J., is a member of the HHS Tick-Borne Disease Working Group. that convened in December 2017, and is a co-chair of its Disease Vectors, Surveillance and Prevention subcommittee. A nationally-known expert on Lyme disease, Ms. Smith said the creation of the new national strategy for treating and preventing Lyme disease was “critical.”

“The need for this comprehensive national strategy for Lyme and tick-borne diseases legislation is critical as Lyme case numbers continue to rise and constituted 82 percent of all tick-borne disease reported from 2004-2016,” she said.
“The number of tick-borne diseases has increased, with around 20 currently in the U.S., and tick populations have exploded, including the introduction of an invasive species of tick from Asia which now appears to be established in New Jersey,” she said. “There needs to be a central location in government which can direct the battle against this Lyme & tick-borne disease epidemic.”

HR 5878 also promotes coordination of federal tick-borne disease activities with the HHS Working Group, which is made up of Lyme disease experts like government officials, doctors, researchers, and patients and patient advocates, like Ms. Smith.

The idea of the working group was first included in Rep. Smith’s Lyme Disease Initiative of 1998 to provide for a multi-year blueprint for the federal government to fight and treat Lyme disease. In 2011, Smith introduced another measure, HR 2557, to create the Tick-Borne Diseases Advisory Committee.

The 21st Century Cures Act, which passed Congress with Smith’s support and was signed into law in 2016, created a group similar to Smith’s proposed working group, the HHS Tick-Borne Disease Working Group.

Rep. Smith has a long history of advocacy for patients with Lyme disease, having fought for more funding of research and awareness of Lyme disease and other tick-borne diseases. He founded and currently co-chairs the Congressional Lyme Disease Caucus

Also in the bill, the HHS Secretary must act to support better and expanded research on tick-borne diseases and the improvement of diagnostic testing, and promote education and public awareness of tick-borne diseases as well as of the expanding threat of Bartonella infection.

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For more on Asian Tick: https://madisonarealymesupportgroup.com/2018/03/12/asian-tick-found-in-new-jersey-can-kill-cattle-by-draining-them-of-blood/

https://madisonarealymesupportgroup.com/2018/04/21/ticks-from-hell-survived-the-winter/

More on Bartonella:  https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

 

“Bullseye” Low Dose Naltrexone & Lyme Disease Documentary

Very informative documentary put out by the LDN Research Trust on Lyme/MSIDS.  Dr. Horowitz, Dr. Toups, Dr. Schweig, Dr. Windham, Dr. Holtorf, & Dr. Schwarzback, speak on everything from testing, to diet, to inflammation, and how LDN can help patients.

https://www.ldnresearchtrust.org/Lyme-Disease-LDN-Documentary (Video found here)  Approx 1 Hour

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For more on LDN:  https://madisonarealymesupportgroup.com/2016/12/18/ldn/

https://madisonarealymesupportgroup.com/2017/06/12/ldn-reduced-pro-inflammatory-cytokines-in-fm-after-eight-weeks/

 

 

 

LD is Spreading at an Alarming Rate – and This is Why

https://www.vogue.com/article/lyme-disease-increase-crisis-global-warming-ticks-illness-symptoms-causes

Lyme Disease Is Spreading at an Alarming Rate—and This Is Why

MAY 16, 2018
by GINNY GRAVES

00-story-image-lyme-disease
Photographed by Arthur Elgort, Vogue, November 2001

Nine years ago, when Deanna Needell was in grad school at UC Davis, she was beset by stomach pain after a bull’s-eye rash swelled around a bug bite—a telltale sign of Lyme disease. “Because I live in California, where Lyme is less common, none of the doctors I saw early on even mentioned it,” she says. The lapse was costly: Needell developed migraines so impervious to medication that she often wound up in the ER; years later, when she started having muscle spasms, her doctor was concerned she might have ALS. (Left untreated, Lyme bacteria can spread to the muscles, nerves, brain, and heart, triggering debilitating complications.) A friend finally floated the possibility of Lyme, and Needell got tested. After a diagnosis and intermittent courses of antibiotics, most of her symptoms have abated.

Now a mathematician at UCLA with a Ph.D., Needell, 37, is seeking answers in big data. Since receiving a National Science Foundation grant in 2017, she and her colleagues have come up with new ways to comb through LymeDisease.org’s registry, which houses more than two million data points from 9,000 patient surveys. The ambitious effort aims to uncover patterns of symptoms that could inform testing procedures and lead to more effective, personalized treatments for a disease that presents differently from patient to patient. Already Needell has noticed more women than men in the survey. “Maybe that has to do with gender bias in medicine, or maybe women’s immune systems respond differently to the bacteria. That’s one of many complex issues we’d like to illuminate.”

Transmitted by the black-legged tick (also known as the deer tick), native to a swath of the U.S. that spans the Northeast into the Midwest, Lyme is caused by a spiral-shaped bacterium, Borrelia burgdorferi—a wily foe that, instead of circulating in the blood, hides in body tissue, where it’s far harder to detect. Traditional blood tests won’t find the bacteria, so labs look for the next best thing: antibodies that show you’ve been exposed. But the approach is hit or miss. According to Brian Fallon, M.D., director of the Lyme and Tick-borne Diseases Research Center at Columbia University, the current two-step diagnostic process is only 35 to 50 percent accurate early on, when treatment is most successful.

That ambiguity only compounds the suffering, as Porochista Khakpour writes in Sick, a new memoir charting her labyrinthine ordeal with Lyme. “To pinpoint this disease, to define it, in and of itself is something of a labor already,” she says in a fact-filled author’s note, which includes the startling statistic that the “number of outbreaks each year has more than tripled since 1980″—a rate that stands to grow as black-legged ticks continue their alarming territorial expansion. “They’re in at least 30 countries and nearly half of all counties in the U.S.—twice as many as 20 years ago—and there’s compelling evidence that their spread is due, in part, to a warming climate that’s more accommodating to ticks,” says Mary Beth Pfeiffer, author of Lyme: The First Epidemic of Climate Change.

As the illness reaches pandemic proportions—with hundreds of thousands of cases in the U.S. annually—innovative efforts are under way to confront and contain it. Fallon’s colleagues at Columbia are homing in on a more sophisticated antibody test to identify eight common tick-borne pathogens; potentially transmitted in a single bite, these other strains can cause additional diseases (like Rocky Mountain spotted fever or Heartland virus, for example) that often confound doctors and complicate treatment of Lyme. Meanwhile, researchers at the Cary Institute of Ecosystem Studies in Dutchess County, New York, are trying to stop the spread of Lyme at its source. The Tick Project—their five-year trial involving nearly 1,000 high-risk households—is testing two interventions: a fungal yard spray as well as a tiny bait box that brushes curious rodents with a tick-killing product. Though deer are often associated with the spread of Lyme, “most ticks pick up the bacteria after feeding on white-footed mice,” explains disease ecologist Richard Ostfeld, Ph.D.

MIT scientists have an even more radical proposal: They want to edit the DNA of white-footed mice so they and their offspring are immune to the bacteria—or, better yet, repellent to the bugs themselves. “Either way, it means far fewer infected ticks,” says Kevin Esvelt, Ph.D., an evolutionary engineer, who conceived the initiative. He has approached the island community on Nantucket, where 40 percent of households have been affected by Lyme, about potentially releasing thousands of genetically modified mice there. Implementation would be years into the future—much like the Lyme vaccine, recently granted a fast-track designation by the Food and Drug Administration—but Esvelt is thinking big. “If it’s effective, we might be able to create a modified version that would work for the mainland as well.”

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**Comment**

Quit saying Lyme is less common in California.  It’s not:  https://madisonarealymesupportgroup.com/2017/08/07/california-lyme-cases-get-no-respect/

https://madisonarealymesupportgroup.com/2017/10/09/bb-in-california-chipmunk-and-squirrels/

https://madisonarealymesupportgroup.com/2018/02/02/miyamotoi-in-ixodes-pacificus-in-california/

Regarding gender and Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2018/05/07/gender-lyme-is-tick-borne-disease-different-for-women/

Regarding what ticks carry what – seriously unbiased research needs to be done.  If you ask those doing this work about this issue they refer you to ancient studies done 30 years ago.  From what I read, Bb is incredibly tough to study in the lab.  We need new techniques and open minds.  We also need straight answers on other modes of possible transmission (sexual, congenital, via breast milk, other insects and ticks).  Little work has been done in this area and the work that has been done has largely been ignored.

Again, this spreading plague has ZIPPO to do with the climate.  Ticks are marvelous ecoadaptors and will be the last living thing on planet earth.  Focus on the REAL issues, please!  https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/

The coinfection issue is paramount & requires serious research and consideration – which isn’t being done.  Mainstream medicine still considers this a Mono illness.  https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/  (The actual number is 16 and counting)

There’s a whole lot more involved than the white-footed mouse.  And GMO mice open up a Pandora’s Box of possible unimaginable consequences:  https://madisonarealymesupportgroup.com/2016/06/21/first-frankenbugs-now-frankinmice/ as well as other another bio-control currently being used: https://madisonarealymesupportgroup.com/2017/07/10/wolbachia-the-next-frankenstein/

What I want to know is why nobody’s talking about controlled burns which are 98% effective!  https://madisonarealymesupportgroup.com/2018/04/03/fire-good-news-for-tick-reduction/

Summary of May 15 TBD Working Group Meeting in Tweets

https://www.lymedisease.org/summary-may-15-tbdwg/

Summary of May 15 TBD Working Group meeting, in tweets

The Tick-Borne Disease Working Group held its fifth meeting in Washington DC on May 15. The public could view it via webcast.

Lonnie Marcum live-tweeted the day’s proceedings. Go to link above and move the scroll bar to view her tweets (and re-tweets and comments from LymeDisease.org President Phyllis Mervine.)

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**Comment**

Normally it would seem logical to focus on areas of agreement; however, I agree with Mervine on the issue of the importance of discussing the plethora of disagreements – or minority opinion, if you will.   If it weren’t for this “minority” opinion, half of us would be dead.  Forty years of this attitude has gotten us no where.  

Teddy Roosevelt once said, “Speak softly but carry a big stick.”

Regarding Lyme/MSIDS that needs to be adapted to:

“Speak Loudly and carry a big stick.”  

News Release on $57.1 Million Lyme Disease Lawsuit Filed Against CDC

https://www.change.org/p/1120418/u/22752033utm_medium=email&utm_source=petition_update

$57.1 Million Lyme Disease Lawsuit Filed Against CDC

Carl Tuttle
Hudson, NH

MAY 15, 2018 — Please see the following news release announcing the lawsuit filed against the CDC which offers additional evidence that the Centers for Disease Control here in the United States has mishandled Lyme disease for the past three decades.

UNITED STATES COURT OF FEDERAL CLAIMS Case No. 18-686C

COMPLAINT:
https://www.dropbox.com/s/zem4v9sceg1v63d/Lee%20CDC%20Complaint%205-15-2018.pdf?dl=0

INDEX OF ATTACHMENTS TO THIS COMPLAINT:
https://www.dropbox.com/s/aqptgajjnapux0h/Lee%20-%20Index%20of%20Attachments.docx?dl=0

MILFORD MOLECULAR DIAGNOSTICS
2044 Bridgeport Avenue
Milford, CT 06460
www.dnalymetest.com

May 15, 2018

Media Contact:
Kevin Moore
203-788-8497

FOR IMMEDIATE RELEASE

$57.1 Million Lyme Disease Lawsuit Filed Against CDC

“Unprecedented” lawsuit claims CDC wrongfully terminated agreement to evaluate guaranteed “no false-positive” DNA based Lyme test utilizing superior technology.

Washington, D.C. – Dr. Sin Hang Lee, pathologist, founder and owner of Milford Molecular Diagnostics, a CLIA-certified diagnostic laboratory in Milford, Conn. (www.dnalymetest.com), today filed a lawsuit with the U.S. Court of Federal Claims alleging that employees of the Centers of Disease Control and Prevention (CDC) unilaterally terminated a contractual agreement under which the CDC agreed to evaluate a “no false-positive” DNA based Lyme disease test, a currently available test that vastly improves the speed and accuracy of Lyme disease diagnosis for sufferers, and one that is capable of diagnosing all tick-borne borrelial infections.

“Dr. Lee notified the CDC of his intention to bring suit on July 19, 2017. This first step was a procedural requirement to exhaust administrative remedies before any citizen can file such lawsuits against the CDC due to its sovereign immunity protection,” said Attorney Mary Alice Moore Leonhardt, of Moore Leonhardt and Associates, a Hartford, Conn., based law firm, who filed the suit on Dr. Lee’s behalf. “The waiting period has passed without any attempted administrative remedies and Dr. Lee’s lawsuit, unprecedented in its scope, is allowed to go forward.”

According to Dr. Lee, his test is based on Sanger DNA sequencing capability, a far superior medical technology than the twenty-five year old two-tiered serology test which remains the standard test typically administered by health care professionals to identify Lyme disease in patients. American and international scientific and medical communities have, for years, acknowledged a high rate of false results emanating from the serology tests.

“While serology tests represented excellent technology for Lyme a generation ago,” said Dr. Lee, “medical scientific technology has advanced greatly since then. For patients’ sake, the CDC and standard medical care needs to catch up. This test offers Lyme disease sufferers a great leap forward.”

In the lawsuit, Dr. Lee claims that he has a contractual agreement through two Material Transfer Agreements signed in 2013 by Dr. Elizabeth Bell, the then director of National Center for Emerging and Zoonotic Infectious Diseases [NCEZID], a division of CDC and subsequent correspondences with two CDC officers to launch a national project to validate a reliable routine 16S rRNA DNA sequencing-based method for the diagnosis of Lyme and other tick borne borreliosis at the early stage of infection before antibody levels are measurable.

Dr. Lee also claims the CDC is fully aware that Dr. Lee’s DNA sequencing test is based on textbook molecular biology principles and may become the gold standard for diagnosing not only Lyme disease, but all tick-borne borrelial infections.

Instead of implementing Dr. Lee’s science-based direct DNA test for improving patient care, the CDC has chosen to use its regulatory power to block widespread application of this highly reliable direct DNA test and channel public funds to promote CDC’s own patented, but immature indirect metabolomics technology for Lyme disease diagnosis, a technology known to be prone to false positives.

The need for such direct molecular detection method in the United States was stated by Dr. Martin Schriefer of NCEZID at an open HHS conference on September 24, 2012 as directed by the U.S. House of Representative’s Appropriations Committee bill of September 2009 and further reinforced by a recent House Report 115-244 to accompany H.R.3358 for FY 2018 https://www.congress.gov/congressional-report/115th-congress/house-report/244/1 in which the Committee on Appropriations specifically “encourages CDC to expand activities related to developing sensitive and more accurate diagnostic tools and tests for Lyme disease…”.

However, after Dr. Lee informed the CDC that he was going to publish his findings that some of the CDC reference serum samples for Lyme disease serology tests in fact contained residues of Borrelia miyamotoi and a novel unnamed relapsing fever borrelial strain, instead of the commonly expected Borrelia burgdorferi species, indicating a diversity of causative agents which are causing clinical Lyme disease in the United States, the CDC suddenly stopped communicating with Dr. Lee and his associate without warning or explanation.

Additionally, in a letter dated February 26, 2016 which has been circulating in the social media, Dr. Bell accused Dr. Lee of having published “inconsistent results.” Dr. Bell has refused to point out the inconsistent results in Dr. Lee’s report, which has been published in a peer-reviewed journal. Dr. Lee claims that the mischaracterization of Dr. Lee’s scientific publication by Dr. Bell as a regulatory officer constitutes an act of defamation with the purpose to cause harm.
Dr. Lee seeks damages of no less than 10 percent of the CDC-estimated Lyme test market values in seven large U.S. commercial laboratories in 2008, i.e., 10 percent of $492 million, as adjusted for inflation using the Consumer Price Index: $57.1 million.

Dr. Lee said he intends to use the money to help hospitals located in Lyme endemic areas to set up DNA testing laboratories to diagnose Lyme and other tick-borne borrelial infections for timely treatment. Dr. Lee also said his DNA sequencing test for Lyme borrelia diagnosis is now pending New York State Department of Health’s final approval to be used for New York State residents.