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/

 

I normally post current studies but this one from 2000 grabbed me as so many Lyme/MSIDS patients suffer with panic attacks, anxiety, and PTSD.  It’s also interesting to note that this symptom completely abated with appropriate “intensive doses of appropriate antimicrobial meds.”  This of course reveals the unrecognized fact that patients are often contending with far more than just Lyme (borrelia) and require different medications.  It also reveals that there can be an underlying infectious cause to things doctors consider to be psychological.  Lyme/MSIDS patients are often misdiagnosed as having mental disorders and are given drugs that actually suppress their immune systems further and allow the pathogens a perfect opportunity to worsen.  All the doxy in the world isn’t going to touch Babesia which requires anti-malarial drugs.  Please read my comment at the end of the Abstract.

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https://www.ncbi.nlm.nih.gov/m/pubmed/15990495/

Panic attacks may reveal previously unsuspected chronic disseminated lyme disease.

Sherr VT. J Psychiatr Pract. 2000.

Abstract

The author describes the histories of three patients with panic-like episodes that turned out to be related to underlying, previously unsuspected tick-borne diseases. Each woman experienced symptoms that are not usual in panic disorder but are typical of neurological Lyme disease, including exquisite sensitivity to light, touch, and sounds, joint pain often in combination with cognitive changes including mental fogginess and loss of recent memory, and some degree of bizarre, shifting, and often excruciating neurological pain. Because these symptoms are atypical of primary panic disorder, they were very helpful in alerting the clinician to suspect an underlying physical illness. In each case, the results of testing revealed positive hallmarks of disseminated Lyme and other tick-borne diseases, including Lyme borreliosis caused by the spirochete, Borrelia burgdorferi, babesiosis, and ehrlichiosis.

Since beginning treatment with intensive doses of appropriate antimicrobial medications for their tick-borne infections, all three patients have become free of panic attacks. Treatment of their infections by a specialist in Lyme disease allowed one of the women to discontinue anti-anxiety medication completely and another to reduce the dose of medication to occasional use only. The third patient is no longer anxious but her depression is resolving more slowly despite the ongoing use of an antidepressant. Two of the patients have also needed ongoing medication for pain and other symptoms of late-stage, neurological Lyme disease.

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Since testing is so abysmal, it is far more helpful to print out and check off symptom lists.  Take these lists with you to your doctor appointments:

https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf

https://madisonarealymesupportgroup.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/ (Circle symptoms you have)

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/ (Circle symptoms you have)

https://madisonarealymesupportgroup.com/2016/02/07/mycoplasma-treatment/  Read up on Mycoplasma as it is often a player and requires thoughtful treatment.

Treatment for Ehrlichiosis is fairly straight forward with doxycycline and normally that is a front-line med LLMD’s use for Lyme, so the good news is that you will lower the Lyme infection & deal with Ehrlichiosis at the same time.  The caveat for Lyme is the fact it is pleomorphic and requires far more than just doxy.  Please read this to understand the nuances of treating borrelia (Lyme):  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2015/12/06/tips-for-newbies/

https://madisonarealymesupportgroup.com/2015/08/15/herxheimer-die-off-reaction-explained/

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/  The symptoms that can and often are a part of the Lyme/MSIDS picture are unbelievable and thankfully more and more is coming out on how devastating this illness is mentally.  I highly encourage you to get to a local support group to be around folks who understand.  Having camaraderie during this dark valley can be extremely helpful.  https://rawlsmd.com/lyme-support?

 

https://www.linkedin.com/pulse/jenna-luch%C3%A9-thayer-may-16-2018-public-comment-disease-luche-thayer/

May 16, 2018. Jenna Luché-Thayer’s Three Minute Public Comment to Tick-Borne Disease Working Group

“As of yesterday, (May 15, 2018) this Working Group effort appears to have:

  • Violated FACA law by obstructing the public’s right to properly prepare for public meetings with access to materials used by federal employees.
  • Shifted to maintaining the status quo while possibly channeling federal funding to specific organizations and individuals.

Most Subcommittee recommendations that could help to immediately improve access to diagnosis and treatment options were removed in favor of ideas that will take much time and money to yield results, such as establishing the Centers for Excellence and the establishment of a new federal website even as the National Guidelines Clearinghouse is defunded.

Pathogenesis appears to restrict Lyme to Borrelia burgdorferi and skirt the many borrelia strains that cause Lyme-like illness and are found in the USA. This restrictive approach will not help to open access to diagnosis and treatment options.

The Working Group’s conflicts of interest information needs to be made available to the public.

For example, the Chair John Aucott’s 2015 filed patent for measuring CCL19 cytokines could be used in relation to the sequalae and complications from Lyme he listed in yesterday’s meeting [1]. Aucott could make money while this restrictive technology is possibly misused to channel which Lyme patients:

·      receive extended antimicrobials to reduce infection or

·      biologics that modify symptoms and suppress the immune function.

The Subcommittee for patient access to care and support veered off their scope of work to identify Lyme groups mostly affiliated and associated with Lyme Disease Association as service providers for the Lyme community.

Such organizations only address ‘a drop in the bucket of need’ related to this epidemic and I sincerely hope the focus on these particular organizations is not an attempt to steer tax dollars to support their activities, as that would be extremely unethical and have limited results.

All Subcommittee Reports were not available until the May 10, 2018 public meeting and there is no evidence the 1000+ public comments were reviewed for these Reports.

These and other practices have obstructed public preparation for a high-stakes Report for diseases that may disable, bankrupt, and kill.

Additional Concerns

1.  The Vice-Chair is a Senior Research Scholar from Stanford University on assignment to the Office of Management and Budget, and apparently not a federal officer [2].

As seven federal members are required by law [3], I ask she be replaced with a federal officer familiar with complicated and persistent Lyme and coinfections, including tick-borne diseases.

2.  The Chair Aucott terminated Dr. Enid Haller without cause and to date, has not put in writing the defamatory accusations he made in the presence of the Vice-Chair, former DFO [Designated Federal Officer], current DFO James Berger and Co-Chair Scott Cooper.

I ask the Chair be replaced with a medical professional who has a reputation for ethical treatment of Lyme patients and advocates.

3.  Some advocates on the Working Group and Subcommittees have tried to inhibit advocacy efforts regarding FACA transparency; this is disturbing, unacceptable and now on public record.

4. Why were two security men with Flak jackets needed?

5. And, how high does the body count have to be for you to do something?”

………………………………………………………………………………………………………………………….

[1] https://patents.google.com/patent/US20160305956

“In a specific embodiment, a method comprises the step of prescribing or administering a second course of antibiotic treatment to a patient who is determined to have an increased level of CCL19 as compared to a control after completing a first course of antibiotics for Lyme disease.”

[2] https://www.linkedin.com/in/kristenhoney/

[3] https://www.hhs.gov/ash/advisory-committees/tickbornedisease/about/21-century-cures-act/index.html

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**Comment from Allison Caruana, treasurer at the Mayday Project and Owner of Lyme Disease Awareness Flags””

Did you know that John Alcott has a patent on CCL9 (MRP2), a cytokine associated with inflammation properties of Lyme Disease, and is directly associated with the ability to develop co-resistance to macrolides? Besides tetracycline, macrolides are the only antibiotic thought to have some (not complete) impact on the control of Rickettsia, a quasi cross-kingdom bacteria/virus. Did you know that macrolides have antiviral properties that help reduce inflammation through an “unknown” mechanism? But wait a minute…Alcott has a patent on CCL9 (MRP2) for its anti-inflammatory properties!!!! Excuse me? What does Alcott really know? Don’t you think he should answer that question?

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/

 

 

 

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/