‘Chronic Lyme Disease’ Debate Reaches US Capitol

•October 9, 2014 • 2 Comments

congress

Excerpted from Healthline: 10/07/2014)

The mainstream Infectious Diseases Society of America says there’s no such thing as ‘chronic Lyme disease,’ but patients with debilitating and mysterious illnesses have come to the nation’s capitol to urge Congress to fund more research.

The debate over chronic illnesses stemming from tick bites has landed on the steps of the U.S. Capitol.

The House of Representatives last month approved legislation introduced by Rep. Chris Gibson (R-N.Y.) that would require the federal government to conduct and support research on Lyme disease and other tick-borne illnesses. The Tick-Borne Disease Research Accountability and Transparency Act of 2014 still needs to pass through the U.S. Senate.

Meanwhile, this weekend, doctors, patients, and Lyme disease advocates will assemble in Washington, D.C., for the 15th annual convention of the International Lyme and Associated Diseases Society (ILADS).

It’s an important time for people suffering from illnesses they believe are related to tick bites. A longstanding feud between the Infectious Diseases Society of America (IDSA) and ILADS is raging with new fervor as more and more people nationwide report debilitating symptoms that last for decades. The IDSA and the U.S. Centers for Disease Control and Prevention (CDC) have created treatment guidelines for Lyme disease based on a number of scientific studies showing that a short course of antibiotics can clear the infection in most people, though several studies mention that one or more subjects experienced “residual symptoms.”

Patients who believe they have chronic Lyme disease don’t accept the answers doctors give them — that their Lyme disease should be gone after a maximum of four weeks of antibiotics, and that any lingering symptoms probably are not related to an ongoing Lyme infection. ‘Chronic Lyme disease’ is not a widely recognized medical diagnosis.

Miserable patients seeking relief, and doctors who have no idea how to help them, have created a culture of extreme mistrust. Patients think most conventional doctors are labeling them as hypochondriacs without making any real effort to help. Most doctors say they can’t help these patients because they do not in fact have chronic Lyme disease. They say other doctors who claim that they can treat chronic Lyme disease are offering false hope, acting unethically, and possibly offering patients treatments that are harmful.

Bill ‘Acknowledges Our Chronic Lyme Sufferers’

Gibson’s legislation calls for basic, epidemiological, translational, and clinical research on Lyme disease and other tick-borne illnesses. It requires biennial progress reports from the National Institutes of Health (NIH).

For more: http://www.healthline.com/health-news/lyme-debate-reaches-capital-100714

Commentary: CDC honesty?

•October 1, 2014 • Leave a Comment

“Honesty”


If you search for tenderness
It isn’t hard to find
You can have the love you need to live
But if you look for truthfulness
You might just as well be blind
It always seems to be so hard to give

Honesty is such a lonely word
Everyone is so untrue
Honesty is hardly ever heard
And mostly what I need from you

-Billy Joel

This week, the CDC announced the first case of EBOLA disease in the U.S. The individual had returned to Dallas from Liberia where he evidently contracted it. In true CDC form, the spokespersons from the CDC are placating the public by insisting that the virus is not a cause of concern because the CDC knows how to contain it.

As those infected by Lyme disease (LD) are all too aware, the CDC’s willingness to be transparent and honest about the risk to the public is in itself a cause for concern. After all, it was only until recently that they informed the public that LD can be contracted throughout the lower 48 states, and the number of cases may be 10 times higher than reported due to misdiagnosis. Unfortunately, many doctors are still not on board with these findings and are still telling their patients that LD does not exist in their states.

So then, are we really to believe that all those people that came in contact with this Dallas man before he was quarantined, have not been infected. We can only hope.

The CDC is truly an amazing organization with an incredible number of highly intelligent professionals. But, until they start treating the public with honesty and being forthright, it discredits the entire organization.

Let’s hope some suicidal fundamentalist doesn’t decide to transport their intentionally infected self into an urban area.

Rob

http://www.nytimes.com/2014/10/01/health/airline-passenger-with-ebola-is-under-treatment-in-dallas.html?hp&action=click&pgtype=Homepage&version=HpSum&module=first-column-region&region=top-news&WT.nav=top-news&_r=0

Has Climate Change Made Lyme Disease Worse?

•September 23, 2014 • 2 Comments

Excerpted from the Scientific American : (9/22/2014)

Richard Gardiner had no option but to shut down his law practice in Fairfax, Va. in the summer of 2012. A fit 60 year-old, he came down with a high fever and the worst chills he had known in his life. He spent a miserable summer bedridden with aches and debilitating fatigue.

At around the same time in Bozeman, Mont., 12-year-old Noelle Freeburg – described by her mother as a “healthy-as-a-horse” tween who enjoyed dancing, swimming and skiing – became feverish, dizzy, and doubled over with stomach aches every time she tried to exert herself.

In different corners of the United States, this middle-aged man and middle school girl were embarking on the same frustrating, costly journey. It took both of them months to learn why their health was deteriorating. They were patients on the frontiers of North America’s expanding Lyme disease epidemic.

Less than four decades ago, scientists identified a spiral-shaped bacteria transmitted by the bite of a tiny hard-bodied tick as the cause of an arthritis outbreak among children in southern Connecticut. Since then, Lyme disease has emerged from obscurity to become the leading vector-borne disease in the United States. The 27,203 confirmed new cases reported to federal health authorities in 2013 marked nearly a 25 percent jump over the previous year.

While the disease is reported coast-to-coast, it is highly concentrated on the Eastern Seaboard, with a range expanding north into Canada and south through Virginia. Reasons for the spread are not fully understood but include suburbanization and the growth of suitable habitat for the black-legged tick, according to the U.S. Centers for Disease Control and Prevention. CDC believes climate change may be a factor, and this spring the U.S. Environmental Protection Agency added Lyme disease to its list of climate change indicators.

The CDC estimates that the number of infections is likely 10 times higher than reported, nearly 300,000 new cases per year based on lab test data.  Yale University researchers say that 10 percent of the population of southern New England has evidence of a previous Lyme disease infection.

With so much unknown, every aspect of the disease – its spread, diagnosis, and treatment – has become steeped in controversy, with patient advocacy groups often pitted against doctors, the medical insurance industry, and public health authorities. All sides agree that prevention is key, but how to stem the disease is unclear, especially when nature appears to be tipping the balance toward spread of the evasive pathogen, at great cost to health.

“It is so pernicious in its impact on individual lives, particularly children who are undiagnosed and suffer hugely and hauntingly throughout their lives,” said Connecticut Sen. Richard Blumenthal, a Democrat who battled for better treatment guidelines as the state’s attorney general and who is leading a charge for expanded federal funding to address Lyme. “It is life-transforming in a fundamental and profound way.”

Noelle Freeburg began missing school regularly after she took ill in March of her sixth grade year. In seventh grade, she was absent for sickness for 49 days. By eighth grade, she made it to the first day of school, “and that was it,” said her mother, Danielle. “Her day was getting up, eating if she could, and then crawling back into bed.”

Doctors never could determine a cause for her symptoms, which would change often, and sometimes abate. “She had peaks and valleys,” remembers Danielle. “She’d be dizzy with a fever and that would go away in a few days, so we thought it might be viral. Then her knees hurt, and she had severe joint pain.”

One doctor said in a case like Noelle’s, with blood tests showing no underlying problem, the family should look to possible emotional issues. “I get that, but it continued not just during the school year but over summer,” said Danielle. “Stress can explain headaches and a stomachache, but it doesn’t explain a fever.”

The family took her to a holistic health practitioner who asked if Noelle’s Bozeman doctors had considered Lyme disease. “‘We don’t have Lyme disease in this area’ – that was the blanket statement from the pediatricians here,” Danielle said. “No one even asked, ‘Have you traveled?'” In fact, Danielle believes that her daughter was bitten by an infected tick in Montana; she recalls her developing a high fever after a tick bite when she was just 2 years old.

For more: /http://www.scientificamerican.com/article/has-climate-change-made-lyme-disease-worse/

House Passes Lyme Disease Research Bill

•September 13, 2014 • Leave a Comment

Excerpted from the Barnstable-Hyannis Patch : (9/12/2014)

The House of Representatives passed a bill on Tuesday that would organize research for Lyme disease and other tick-borne illnesses.

The Tick-borne Disease Research Transparency and Accountability Act of 2014 would help prevent the spreading of the disease in Massachusetts, which has some of the highest incident rates of Lyme disease in the country, Congressman William Keating said.

Under the bill, a group of Lyme physicians and patient advocates would work with the Secretary of Health and Human Services on a plan to submit to Congress in three years. The plan must improve the detection, treatment and prevention of tick-borne diseases.

“I know how devastating tick-borne diseases are for those who suffer from them,” said Keating, who cosponsored the bill and is a member of the Congressional Lyme Disease Caucus.

According to the U.S. Centers for Disease Control and Prevention, the disease is spreading. Around 300,000 cases of Lyme disease are diagnosed each year, generally affecting children and senior citizens, the CDC reported.

For more: /http://patch.com/massachusetts/barnstable-hyannis/house-passes-lyme-disease-research-bill-0#.VBROG3l0zY8

With more Lyme disease, public health experts call for more awareness, research

•September 1, 2014 • Leave a Comment

Excerpted from the Portland Press Herald : (08/29/2014)

Lisa Lawlor spends most of her waking hours in bed, swallowing 25 pills each day to manage numerous Lyme disease-related symptoms. She receives antibiotics three times per day, intravenously into her left arm. Although she can walk, she often uses a wheelchair because she is so weak. The joint pain, inflammation and fatigue never completely go away, and the Saco resident often experiences nausea.

Lawlor’s symptoms are worse than most Lyme sufferers, but she’s far from alone in coping with the disease and its aftermath.

While Lyme disease is not new to Maine, the number of people diagnosed each year is growing rapidly. Broader public awareness, more research into how the disease works, and tools to treat and prevent it are needed, public health officials say.

Lyme disease diagnoses hit a record high of 1,376 cases in 2013, with this year shaping up to be similar to last year, according to officials with the Maine Centers for Disease Control. And many more Mainers are likely to have been bitten by ticks.

“Scientists believe it’s 10 times more prevalent than what is actually reported,” said Susan Elias, clinical research associate at Maine Medical Center Research Institute’s “tick lab.” If true, about 1 percent of Mainers per year will have contracted Lyme disease over the past two years.

The reason: Lyme disease, a bacterial infection spread by ticks, is often under-reported. The symptoms run the gamut, with some people shrugging off flu-like complaints after a week or two and others suffering for years with severe problems.

Public health officials are grappling with a disease that just a decade ago was diagnosed in fewer than 100 Mainers per year.

A new report by the National Wildlife Federation said warming global temperatures, caused by fossil fuel consumption, have increased the habitat available for ticks. Warmer winters, hotter summers and high temperatures that extend into autumn make conditions ripe for ticks to reproduce and spread.

For more: /http://http://www.pressherald.com/2014/08/20/with-lyme-cases-growing-public-health-experts-call-for-more-awareness-research/

Commentary: Lyme Disease, in all fairness, we need more awareness

•August 24, 2014 • Leave a Comment

Occasionally, I peruse the stats on this BLOG to see what’s trending. Not surprisingly, the most popular subject over the past couple of weeks has been “Lyme and ALS” (http://lymehandbook.com/index/400-misdiagnoses/450-lyme-als/ ).   Obviously, the fund raising sensation “The ALS ice bucket challenge” has not only turned our neighbors and celebrities into refreshing summer cocktails, but has also sparked a welcoming interest in ALS.

It pleases me to see ALS diagnosed patients consider Lyme disease (LD) as a possible cause of their illness.  Lymies have suggested this connection for some time, but then again, us Lymies think most ills are the result of LD. And why not, with the CDC now admitting that there about 300,000 new cases in the U.S. each year, and that many of these cases are misdiagnosed as ALS, MS, Parkinson’s, etc. We all should be wary.

The Ice Bucket Challenge certainly is a Marketing and Fundraising phenomena. Getting the masses to film themselves doing a torturous act based on a dare seems more in line with Steve-O of “Jackass” fame than a national fundraising campaign.

Wouldn’t it be wonderful if to raise awareness for LD in a similar way? What would such a campaign look like? Maybe posting a selfie made-up like a zombie would be fun. We could include a caption like, “THE LYME UNDEAD: BECAUSE THE DOCTOR HAD THE MOXY TO NOT TRY DOXY,”.

Of course, there are plenty of better ideas floating out there. Let’s see what we can do..

undead

 

 

 

Lyme disease risk is year-round in Northwest California, according to new study

•August 20, 2014 • 3 Comments

Excerpted from the EurakAlert: (08/19/2014)

SILICON VALLEY, Calif., August 19, 2014 — Bay Area Lyme Foundation, which aims to make Lyme disease easy to diagnose and simple to cure, applauds new research published in an upcoming issue of the Elsevier peer review journal Ticks and Tick-borne Diseases. The findings show that ticks that carry Lyme disease in Northwest California are active throughout the year, making the threat of Lyme disease year-round. The research was conducted by researchers at California Department of Public Health (CDPH) Vector-borne Disease Section and University of California, Berkeley (UC-B).

“These results are critical as they offer proof that it is possible to become infected with Lyme disease in the Bay Area at any time of the year,” said Linda Giampa, Executive Director, Bay Area Lyme Foundation. “It underscores the need for residents to take precautions year-round and know the symptoms of the disease. While the threat in Northwest California is lower, it’s more constant than the Northeast USA.”

The findings suggest that the timing of peak tick activity of Western Black-legged ticks (Ixodes pacificus), which are the ticks most commonly known to carry Lyme disease in Northwest California is largely predictable and year-round. In general, tick larvae (young ticks) are active April to June, and sometimes activity extends into October, while adult ticks are active from October to May. From January to October, nymphal ticks (which are younger and smaller than adult ticks but older than larvae) become active.

Interestingly, the highest reported incidence of Lyme disease in humans in Northwest California correlate to the times when the younger, smaller ticks (nymphal I. pacificus), which are smaller than a poppy seed, are most active.

“Based on these results, tick season in Northwestern California is longer than even we expected and quite different from patterns in the Northeast USA,” said Daniel Salkeld, PhD, a Public Health Biologist formerly with the California Department of Public Health (CDPH) Vector-borne Disease Section, and currently a Research Scientist, Colorado State University. Dr. Salkeld was an author of the recent study published in a journal of the Centers for Disease Control (CDC) that found that ticks carrying the bacteria that cause Lyme disease, are widespread in the San Francisco Bay Area, which was funded by Bay Area Lyme Foundation. He is now supported by the Bay Area Lyme Foundation to continue research into the ecology of ticks and their pathogens in California.

Compounding the growing problem of Lyme disease in northwestern California is that the host animals that most commonly carry Lyme disease are also active throughout the year and often live for extended periods of time, compared to host animals in the Northeast United States. In the Northeast, few white footed mice, the host animals that most commonly carry the bacteria that causes Lyme disease in that region of the country, live through the cold winters. By contrast, the host animals that most commonly carry the bacteria that causes Lyme disease in California, western gray squirrel and dusky-footed wood rat often live longer than one year and can carry the bacteria throughout the year.

For more: /http://www.eurekalert.org/pub_releases/2014-08/d-ldr082014.php

 
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