Lyme disease bill heads to President’s desk: Senator Gillibrand

•December 10, 2016 • 1 Comment

Excerpted from Outbreak News  Today: (12/08/2016)

U.S. Senator Kirsten Gillibrand today announced the passage of legislation that would take important steps to combat tick-borne diseases, which remain a significant public health threat in states across the country. The bill will now go to the President’s desk to be signed into law.

“This is an important advancement to help combat the growing epidemic of Lyme disease,” said Senator Gillibrand. “Our families should be able to enjoy nature without the fear of possibly contracting this disease. This bill would streamline and coordinate the federal resources needed to improve diagnosis, treatment, and reporting of Lyme disease, and ensure that a diversity of perspectives are represented within the newly established federal Tick-Borne Disease Working Group. I applaud my colleagues for joining me in support for this legislation, and look forward to seeing it signed into law by the President.”

“Lyme disease and tick-borne illnesses are devastating families across our region,” said Congressman Chris Gibson (NY-19). “This bipartisan, constituent-driven legislation will bring about effective ways to treat, detect, and prevent these conditions, including chronic Lyme. I want to thank the hundreds of patients, advocates, and physicians who have partnered with us to advance these reforms. To my House and Senate colleagues, thank you for supporting our efforts to bring relief to a long-suffering community.”

In February, Gillibrand along with Senators Richard Blumenthal (D-CT) and Kelly Ayotte (R-NH) wrote to the Senate Health, Education, Labor, and Pensions (HELP) Committee urging the consideration of their bipartisan bill to combat tick-borne diseases.

Between 2005 and 2014, there were 37,977 reported cases of Lyme disease in New York, one of the most heavily affected populations in the country, according to the Centers for Disease Control and Prevention (CDC). The CDC reports that Lyme disease is the most commonly reported vector-borne disease in the United States. However, reported cases do not accurately reflect every diagnosed case of Lyme disease. While approximately 30,000 cases of Lyme disease are reported to the CDC each year, the CDC estimates that roughly 300,000 people are diagnosed with the disease per year. 95% of confirmed Lyme disease cases in 2015 were reported from just fourteen states, including New York.

Senator Gillibrand introduced the Lyme and Tick-Borne Disease Prevention, Education, and Research Act, with Senators Richard Blumenthal (D-CT), Kelly Ayotte (R-NH), Jack Reed (D-RI), and Sheldon Whitehouse (D-RI). Representative Chris Gibson (R-NY) introduced a similar bill in the House of Representatives known as the Tick-Borne Disease Research Accountability and Transparency Act. Provisions from these bipartisan bills were included in the 21st Century Cures Act, which passed the House of Representatives last month.

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Ticked off? New info on Lyme disease North Country people should know

•October 29, 2016 • Leave a Comment

Excerpted from North Country NOW: (10/29/2016)

Even though I was born and raised in New York State, I never cease to be awestruck by the beauty of our changing seasons, and cannot imagine living in a place where the years pass with scant visible change in the environment. Yet there is one season I cannot abide, and it has arrived with a vengeance: hunting season.

Mind you, I have no problem with safety-trained folks traipsing through the woods this time of year toting rifles or compound bows. What I object to are all the unlicensed, eight-legged hunters which have (literally) come out of the woodwork lately: ticks. A decade ago it was unusual to find a single tick after a northern New York wilderness weekend, but now in many places all you have to do is set foot in the brush and you’re ambushed by hordes of black-legged ticks, commonly known as deer ticks.

Smaller and more difficult to see than most other ticks, deer ticks can transmit a number of serious diseases, including Lyme, babesiosis, anaplasmosis, and Powassan virus. In fact it’s possible for two or more diseases to be transferred by a single tick bite. A high percentage of infections come from the immature or “nymph” stage deer tick, tinier than a poppy seed and nearly impossible to detect (at leasnat for those of us over fifty) without magnification. The adults are not exactly huge, being a bit smaller than a sesame seed, but they are the ones most active during hunting season, ahnd any time when winter temperatures get above freezing.

In light of new research published this summer, we need to update our understanding of the risks posed by deer ticks. Honestly, not even Captain Hook is more terrified of ticks than I am, but no one can afford to stick their head in the sand. We’d probably end up with grit in our ears, which is uncomfortable, and worse yet, we could contract a tick-borne disease.

In a July 2016 presentation to fellow physicians, Dr. Nevena Zubcevik of the Harvard Medical School, and co-director of the Dean Center for Tick-Borne Illnesses, warned that the medical community is not keeping up with current findings. For example, “The conception that the tick has to be attached for 48 hours is completely outdated,” she said, citing studies that show ticks can transmit disease in as little as 10 minutes.

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The secret Swiss Agent: Puzzling comments reveal new twist to the Lyme disease saga

•October 14, 2016 • Leave a Comment

Excerpted from the Stanford Medicine:  (10/13/2016)

While I was conducting a 2013 biographical interview with Willy Burgdorfer, PhD, the discoverer of the Lyme disease bacterium, he reluctantly confessed that he’d left something important out of his Lyme discovery articles. There was another bacterial perp at the scene of the mysterious outbreak of juvenile arthritis in Lyme, Connecticut, circa 1979. He nicknamed this new tick-borne organism (from the rickettsia genus) the “Swiss Agent,” after he found that many of the original Lyme patient blood samples reacted strongly to tests that identified a type of rickettsia found in Switzerland. Yet he never published these results, and he died before he could fully explain why.

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33 percent of area ticks carry Lyme disease, finds Pitt-Johnstown study

•September 27, 2016 • Leave a Comment


Excerpted from the Tribune’Democrat :  (09/26/2016)

But the results of the University of Pittsburgh at Johnstown associate professor’s multi-year study shocked her anyway.

DNA testing of 500 deer ticks caught across the region showed that one in three carried the Lyme bacteria, Henning and a team of six Pitt-Johnstown students found.

“Typically when you think about Lyme disease issues, people think of it as an East Coast thing. But the results show just how much it’s spreading west across the state,” she said. “It really shows that we’re dealing with a problem that continues to grow.”

Henning researched ticks and Lyme disease as an undergraduate and studied infectious diseases as a grad student at The University of Pittsburgh.

It wasn’t long after she joined Pitt-Johnstown’s faculty in 2010 that she realized it made good sense to continue her research, she said.

“This is an active area. A lot of people are into hiking and biking and other outdoor activities … and there isn’t a lot of research regarding ticks and their association with Lyme disease in this part of Pennsylvania,” she said.

The research also allowed her to biology students to gain engaging experience both in the field and in a lab setting, Henning said.

The team focused its research on “questing” deer ticks – those hunting for a new host – in Bedford, Cambria, Indiana and Westmoreland counties.

They acquired a state Game Commission permit to collect the tiny arachnids inside game land property, areas that are typically havens for mammals like mice, rabbits and deer that ticks feed on throughout their lifespan, she said.

Students dragged a white sheet through six different forested areas like the Prince Gallitzin area and central Bedford County to pick up the ticks.

“I made them pull up their hair and wear white so that any ticks that jumped on to them were easy to spot,” Henning said. Any openings between clothing where skin might be accessible were fastened with duct tape, she said.

Once students were back on campus, they crushed the ticks’ bodies with tweezers, she said. Their remains were placed into containers for DNA testing.

Approximately 500 deer ticks were tested – a four-hour process each time, Pitt-Johnstown senior Corey Coleman, 21, said.

The results stunned him, too.

“When you think of Lyme disease, you think it’s some kind of rare occurrence. But this shows that if you get bit by a tick, the odds aren’t rare that you can get it,” said Coleman. of Central City.

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CDC Says Fewer Suffer After Lyme Disease. Doesn’t Say, If Treated Early.

•September 14, 2016 • Leave a Comment

Excerpted from the Huffington Post :  (09/08/2016)

For at least five years, the U.S. Centers for Disease Control and Prevention has officially stated that 10 to 20 percent of patients treated for Lyme disease — some 30,000 to 60,000 of 300,000 infected yearly — “will have lingering symptoms of fatigue, pain, or joint and muscle aches,” even after supposedly curative antibiotic treatment.

But quietly, without peer review or formal announcement, the agency has decided that the actual percentage is much smaller — half or a quarter as much. The decision was made, officials told me, based on a study that showed less than 5 percent of Lyme patients exhibit ongoing symptoms after treatment.

Consequently, the CDC’s web site now states that “a small percentage”
of patients will have lingering symptoms of what is called Post-treatment Lyme Disease Syndrome or PTLDS. Other studies have found higher shares of patients suffering after treatment, particularly when diagnosis is delayed. The study cited by the CDC was of patients treated early and who exhibited symptoms on average 15 years later.

The agency’s pronouncement involves the most contentious issue in the debate over Lyme disease: why — and how many — people have problems involving pain, mobility, and mental and physical functioning even after taking single-course antibiotics recommended by the Infectious Diseases Society of America, or IDSA.

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Mystery Solved: How Lyme Disease Bacteria Spread Around the Body

•August 26, 2016 • Leave a Comment

Excerpted from Live Science :  (08/25/2016)

Drugs that target BBK32 might help to prevent the spread of B. burgdorferi to joints, the heart and the nervous system, although future research is needed to test this, the researchers said. In addition, because B. burgdorferi’s method of movement resembles that of leukocytes, existing drugs could be repurposed for Lyme disease, the researchers said. Those drugs treat certain autoimmune disorders by targeting leukocyte-blood vessel interactions.

When you’re bitten by a tick carrying the bacteria that cause Lyme disease, the microbes travel through your bloodstream and can eventually spread to the heart, joints and nervous system. But exactly how these bacteria move inside human blood vessels to spread throughout the body has remained largely a mystery, until now.

A new study sheds light on the way these bacteria latch onto the inside of blood vessel walls and move inside the vessels while fighting the forces of flowing blood.

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“It’s A Scandal” -Daryl Hall on Doctors Denying Chronic Lyme

•July 23, 2016 • 1 Comment

Excerpted from the Huffington Post :  (07/22/2016)

Growing up a musically-obsessed child in the 80’s, Daryl Hall was one of my biggest inspirations. A masterful, inventive songwriter with an ocean of soul, he set me on the path to being an artist, to never waste a word, and to sing because I mean it.

With six number ones and five additional top ten hits throughout the 70’s and 80’s Daryl Hall and John Oates are the number one duo in music history. Still at the top of his game at 69 years old, Daryl has won legions of new fans with his hit MTV Live show Live From Daryl’s House.

In February of 2015, at my very sickest from chronic Lyme and Bartonella, after it was missed by eleven NYC doctors, I was homebound and in heart failure. On one of those terrifying, bleary days I caught the last half of a Dan Rather interview with Daryl.

Near the end, Rather asked, “What’s the worst thing that’s ever happened to you?”

Daryl exhaled, “Getting Lyme Disease is no fun, I’ll tell you that right now.”

“I have to speak with him,” I thought. “He looks so good! I need to know how he got better.”

So, here is my conversation with Daryl and with Dr. Richard Horowitz, Daryl’s esteemed Lyme specialist, Board Certified Internist and Director of the Hudson Valley Healing Arts Center, in Hyde Park, New York, and New York Times best-selling author of Why Can’t I Get Better. His forthcoming book, How Can I Get Better, will be out later this year.

Daryl, thank you for going on the record; many celebrities don’t want to talk about this and I don’t know why.
I don’t either. I don’t know why anybody would want to hide this, there’s no stigma against it. It’s something that’s happening to everybody.

How and when did this all start for you?

About ten years ago, I started getting tremors, especially in my left hand and arm, with twitching, and I didn’t know what that was. I’ve always had food allergies and spring allergies but then I got this very serious celery allergy. And that came out of the blue. And then finally I came down with this raging fever and really stiff neck and body.

What was the timeframe for all of the symptoms to surface?

This took place over the course of about a year.

I assume you were seeing doctors- what were they saying?

They told me it was the summer flu and all this nonsense. So I started talking to my family about it and my ex-wife, who has Lyme, said it sounded to her like Lyme. So I went to another doctor who finally did test me, and found I also had ehrlichia. He gave me two weeks of Doxycycline only, and of course, old story, nothing happened. Except that the bull’s-eye suddenly appeared. But I was not getting any better.

And then my sister found Dr. Joseph Burrascano for me, who was one of the few Lyme doctors practicing, and he was out in the Hamptons. He was the first Lyme-literate doctor that I went to and he gave me my diagnosis and started proper treatment. That went on for about a year.

What was the treatment?
I was pulsing oral antibiotics. I did not do an IV. I cycled through many different antibiotics, and slowly I started feeling better. Dr. Burrascano actually assessed me for Parkinson’s because of my tremors, but thank God, I did not have it. It was Lyme.

Dr. Horowitz, is there a way to distinguish between Parkinson’s and Parkinsonism? How common are tremors with Lyme and other tick-borne disease, and which infection seems to cause it?

Dr. Horowitz: Parkinson’s disease is a clinical diagnosis, and the one common denominator underlying most chronic illness, especially neurological diseases like Parkinson’s, is inflammation. We now know that different neurological diseases, including Parkinson’s and Alzheimer’s, as well as the symptoms of chronic Lyme disease are all influenced by inflammation, which can have multifactorial etiologies.

For example, inflammation could be due to different infections (like Lyme and Bartonella), autoimmune processes, environmental toxins, unhealthy bacteria in our colons (dysbiosis), an improper diet and/or nutritional deficiencies, as well as a lack of sleep.

I call these multiple overlapping medical problems keeping Lyme patients sick, MSIDS. It stands for Multiple Systemic Infectious Disease Syndrome and it is a comprehensive map to identifying the factors that keep people sick so that they can achieve wellness. Infections and toxins on the MSIDS map drive inflammation, and in the case of tremors, Lyme combined with mercury toxicity and pesticide exposure, can all increase inflammation in the central nervous system, leading to amyloid production, which damages our nerve cells. This causes memory problems and tremors. If we want to control the symptoms of Lyme disease and decrease these neurological manifestations, we have to address all of the above overlapping causes of inflammation.

Daryl, did you continue on treatment after the first year?
Yes, Joe moved into research and I began treatment with Dr. Richard Horowitz, and I have been with him ever since. He is an extraordinary doctor, incredible.For

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