Archive for the ‘Uncategorized’ Category

Bb Endemic in Ticks & Hosts Outer Banks of North Carolina

http://doi.org/10.1111/zph.12302

Abstract

The spirochaete Borrelia burgdorferi associated with Lyme disease was detected in questing ticks and rodents during a period of 18 years, 1991–2009, at five locations on the Outer Banks of North Carolina. The black-legged tick Ixodes scapularis was collected at varied intervals between 1991 and 2009 and examined for B. burgdorferi. The white-footed mouse Peromyscus leucopus, house mouse Mus musculus marsh rice rat Oryzomys palustris, marsh rabbit Sylvilagus palustris, eastern cottontail Sylvilagus floridanus and six-lined racerunner Cnemidophorus sexlineatus were live-trapped, and their tissues cultured to isolate spirochaetes.

Borrelia burgdorferi isolates were obtained from questing adult I. scapularis and engorged I. scapularis removed from P. leucopus, O. palustris and S. floridanus. The prevalence of B. burgdorferi infection was variable at different times and sites ranging from 7 to 14% of examined questing I. scapularis. Mitochondrial (16S) rRNA gene phylogenetic analysis from 65 adult I. scapularis identified 12 haplotypes in two major clades. Nine haplotypes were associated with northern/Midwestern I. scapularis populations and three with southern I. scapularis populations. Sixteen isolates obtained from tick hosts in 2005 were confirmed to be B. burgdorferi by amplifying and sequencing of 16S rRNA and 5S-23S intergenic spacer fragments. The sequences had 98–99% identity to B. burgdorferi sensu stricto strains B31, JD1 and M11p.

Taken together, these studies indicate that B. burgdorferi sensu stricto is endemic in questing I. scapularis and mammalian tick hosts on the Outer Banks of North Carolina.

21st CCA Passes Senate

Lyme Patients have a seat at the table!

The US Senate passed the 21st Century Cures bill which included Lyme language. After days of discussion on the Senate floor about numerous provisos in the huge health care initiative, and stalling on the floor, a vote was called for and the Senate amendment including Lyme passed 94-5. The five Senators who voted no on the Cures Act are Sanders (I), Wyden (D), Merkley (D), Lee (R), Warren (D).

President Obama, in his weekly address on December 3, called upon the Senate to pass this important legislative package just as the House had overwhelmingly done on November 30.

See Lyme portion of the language: https://madisonarealymesupportgroup.com/2016/11/30/latest-on-21st-cca/

See video on House here:  https://madisonarealymesupportgroup.com/2016/12/02/congressman-smith-on-cca/

According to Lyme Disease Association President, Pat Smith,

“We have worked for many years to get chronic Lyme recognized, as probably 20% or so of patients develop it after short-term treatment. The government agencies have not recognized those individuals with chronic symptoms, and along with certain groups who have exclusively promulgated Lyme treatment guidelines that only permit short-term treatment, they have shut out from the deliberations in DC the most important stakeholder group, patients, along with advocates and treating physicians.”

She added, “these stakeholders will provide input into the research choices necessary to help all Lyme patients – research then funded by the agencies. Much of the past research funded ignored the plight of those with chronic disease, and discounted the research that so clearly demonstrates that the spirochete may survive current recommended treatment regimens. Not only does this bill allow for those stakeholders at the table, but also it requires a diversity of  ‘scientific disciplines and views,’the latter which was almost a deal breaker during Lyme language negotiations. 

We are grateful to Senator Lamar Alexander (TN) and Patty Murray (WA), Senate HELP Committee Chair and Ranking Member, respectively, for helping to get this “Cures” bill passed.  We also thank Senator Richard Blumenthal (CT) and Senator Kirsten Gillibrand (NY) for their support in earlier Senate efforts on Lyme disease.  In the House, we thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, and Congressman Chris Gibson.”

For more information about this bill go to www.LymeDiseaseAssociation.org

MyLymeData – Register Now

https://www.mylymedata.org

My mom used to say, “If you want something done right, do it yourself.”  Well, that’s what MyLymeData is doing – research using information directly from you.

Even if you’ve registered, check back periodically as they add new surveys.  The last one asked questions specifically about successful treatment.  By clicking on the tab, “View Data” at the top of the page, you can go to any question on the survey and see how others answered.  For instance an antibiotic protocol for 1-12 months using Flagyl or Metronidazole got the best score according to those who have filled out the survey so far.

MyLymeData uses big data research tools that allow patients—even thousands or tens of thousands– to quickly and privately pool their data to determine which treatments work best. This research begins with you. Simply click on Register Now! to begin, or Login at the link above if you are a returning user.

Fill it out today!

Ultramarathoner For LymeLight Foundation

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Photo by Myke Hermsmeyer
JAX MARIASH KOUDELE (right) poses with her trophy after winning the last 4 Deserts ultramarathon race in Antarctica. She is next to the winner of the men’s category, Tommy Chen. The race took place in several locations around the continent, with athletes spending nights on a ship.

http://www.hoodrivernews.com/news/2016/dec/03/local-ultramarathoner-wins-historic-title-antarcti/

Five races and over a million kilometers later, Jax Mariash Koudele is a world champion.

Last week, the Hood River runner and owner of Stoked Roasters took first place in the women’s category of a 250-kilometer multi-day ultramarathon in Antarctica, part of a larger competition known as the 4 Deserts, where runners compete in some of the most extreme conditions on the planet. Koudele ran in all four races — Chile (Atacama Desert) Namibia (Sahara Desert), and China (Gobi Desert) — and took first place for women in all four races.

That series is combined with another race (this year, in Sri Lanka) to form the 4 Deserts Grand Slam Plus. Koudele took second in that race, but placed first in the women’s category in the overall series. She is the first woman to ever finish the Grand Slam Plus.

Koudele, was thrilled at the result, but also excited about that funds that have been raised for the nonprofit she runs for: Lymelight Foundation, an organization designed to help children and young adults who are struggling with Lyme disease to gain access to treatment and the money to pay for it.  http://www.lymeinfo.net

“Gosh, this whole accomplishment is leaving me in a shock right now. I had four goals that I dreamed of making come true and low and behold, we exceeded expectations. To think back to 11 months ago when the dream first came to be, I simply wanted to be the first woman in the world to accomplish the Grand Slam Plus,” she wrote the News via email Thursday on her way back to the U.S. “I cannot believe that fast forward to today and I am the 2016 4 Deserts female world champion, third ever in history to win all 4 Deserts races in one fiscal year, become the first woman ever to complete the Grand Slam Plus, and we have surpassed our goal for the LymeLight Foundation of $10,000 to be at $15,326 and still climbing with five days left to go on a 100-percent match promotion to close out the campaign.”

Every stage of the race was brutal, because if running 250 kilometers in inhospitable conditions isn’t bad enough, runners had to carry everything they needed with them on their backs, as the race is a self-supported one. But Antarctica was especially challenging, Koudele said, who called it “the hardest race of the series and quite frankly, my life.”

Getting to the race venue, which was held at multiple locations in Antarctica, including Half Moon Island, was an ordeal itself. After landing in Argentina, Koudele sailed through the Drake Passage — a notorious body of water commonly known as having some of the roughest seas in the world. On the way there, seas were flat. On the way back, not so much.

‘Every day, we were famished and completely exhausted. Our legs and feet would throb all night long. Every muscle and tendon felt like it was on the brink of falling apart.’

“On the way home, we experienced the Shaky Drake, which was a 6 out of 10 on how bad it can be and holy cow, it was 48 hours of the most intense rolling from side to side, up and down, you have ever imagined,” she said. “After 250k of running, you now had to find out how to survive sea sickness. Some hours were okay and others you held on trying not to throw up. It was like a 48-hour roller coaster ride.”

Though it is nearing summer in the Southern Hemisphere, temperatures were still below freezing most of the time, with wind and snow battering the competitors. Koudele said terrain was especially challenging, running in snow, ice, and slush, climbing up and down in elevation (24,000 feet in a week) so much that it felt like “a ski mountaineer racing without the skis.”

“Every day, we were famished and completely exhausted. Our legs and feet would throb all night long. Every muscle and tendon felt like it was on the brink of falling apart,” she recalled. “Some nights, you would lie in bed just tossing and turning and trying to roll out your muscles and stretch and trying to figure out how you would muster up energy to wake up the next day to run again for multiple hours.”

But Koudele survived, and then some, finishing out her year-long odyssey on top. She is already thinking about competing in other noteworthy ultramarathons, including the Barkley Marathon and Ultra-Trail du Mont-Blanc in the Alps, but doesn’t have concrete plans for her next adventure yet. Right now, she’s enjoying the aftermath 4 Deserts Grand Slam Plus victory.

“All-in, I will dab into some type of running adventures this next year, but for the most part, the focus will be on trying to capitalize on this adventure and story tell and inspire folks to get out there and live their dreams,” she said.

Go Girl Go!

Big News for Lyme Patients

https://www.lymediseaseassociation.org/news/1586-asbury-park-press-big-news-for-chronic-lyme-disease-sufferers

ASBURY PARK PR: BIG NEWS FOR CHRONIC LYME SUFFERERS
01 December 2016

With the help of Rep. Chris Smith and a Wall advocate, the House passed breakthrough legislation on the hot-button issue.

For decades, Wall resident Pat Smith has implored the medical establishment to acknowledge the existence of chronic Lyme disease. On Wednesday, her quest took a big step forward.

The House of Representatives passed the 21st Century Cures Act, a comprehensive health care bill that would establish a national working group on Lyme disease. The 14-member panel would include physicians with experience in treating tick-borne diseases, Lyme patients and advocates for those suffering from the condition.

“This is really groundbreaking,” said Smith, president of national nonprofit Lyme Disease Association in Wall. “Prior to this we’ve never had anything at the federal level that permitted patients to be at the table with federal officials. It’s desperately needed.”

Lyme disease affects nearly 400,000 people per year in the U.S., most of whom live in the northeast. For many who are diagnosed promptly, the standard month-long course of antibiotics mitigates the illness. But detection is difficult, and for thousands of folks, the symptoms continue for months or years.

To date, the influential Infectious Diseases Society of America has declined to recognize chronic Lyme in its clinical practice guidelines. Chronic Lyme advocates say that omission has caused a domino effect of needless suffering.

Representative Chris Smith (R-4th) has been pushing for a federal panel to address the issue since the early 1990s. The Senate is expected to pass the Cures Act, which got through the House by a vote of 392-26, in the coming days.

“Many have suffered for decades with this debilitating disease, only to be told that their illness does not exist,” Chris Smith said in a statement. “Enactment of the Cures package will move us one step closer to acknowledging and addressing the root problems of chronic Lyme.”

The issue was first brought to Rep. Smith’s attention by Pat Smith. In the late 1980s Lyme disease afflicted two of her daughters, one of whom missed four years of school. For years, she and Chris Smith (no relation) worked in vain to get federal recognition of chronic Lyme.

The continued dissemination of outdated guidelines . . . has contributed to medical community’s denial of chronic Lyme disease and the denial of coverage by insurance companies of treatments for chronic Lyme disease,” Smith told the Asbury Park Press in a wide-ranging interview on the subject in May.

New Jersey ranks second among all states in Lyme cases, with 4,855 reported in 2015. Since the condition is known to be under-reported because it can be difficult to detect, the actual number of cases in the Garden State is believed to be closer to 50,000.

“Having knowledgeable people at the table will put the focus on the research, and there is a huge amount of brand-new research that shows there are (Lyme) cells that are left over after regular treatment,” said Pat Smith, who was involved in drafting the language establishing the working group. “This may be the root of the problem.”
In addition, she said, the Cures Act “will cause these federal agencies to have to talk about all of this in public.”

For both Pat and Chris Smith, it marks a victory after prior attempts to create a national task force were rejected.

“My original legislation ensured the individuals impacted by federal policies would have a seat at the table when the decisions are made,” Chris Smith said. “It has taken many years and several drafts, but thankfully today’s Cures package includes similar language that will begin the process of addressing the great unmet needs in the Lyme community in an open and transparent manner.”

For more information on the Wall-based Lyme Disease Association, visit www.lymediseaseassociation.org.
Staff writer Jerry Carino: jcarino@gannettnj.com
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(Asbury Park Press 12/1/16, Jerry Carino)