info@projectlyme.org

Chris Philbrook

UNTREATABLE FORM OF LYME DISEASE COULD HIT 2 MILLION AMERICANS BY 2020, SCIENTISTS WARN

Scientists predict the number of people suffering from a little-understood type of Lyme disease could spike to almost 2 million in 2020.

The most common vector-borne illness in the U.S., Lyme disease is caused by the Borrelia burgdorferi bacterium, which is spread by infected ticks. Sufferers can have a fever, headache, chills, fatigue, joint and muscle ache and swollen lymph nodes. In many cases, patients experience an erythema migrans rash that can grow up to 12 inches around the area of the tick bite. Around 329,000 cases are thought to occur each year, although the true number of infections is thought to be higher.

In most cases, doctors prescribe antibiotics and the symptoms pass. However, for others the symptoms can linger in what is known as post-treatment Lyme disease (PTLD) or post-treatment Lyme disease syndrome. The condition is characterized by cognitive dysfunction, incapacitating fatigue and chronic pain, according to the authors of a study published in the journal BMC Public Health.

The condition is poorly understood; there is no set diagnosis for it, and treatment is controversial, the authors wrote. The cause is unknown—some believe the bug can disrupt the immune system—and it can take months to recover. Past estimates suggest treatments fail in between 10 and 20 percent of cases, which could cost the U.S. economy up to $1 billion per year.

“Although antibiotic therapy cures most LD patients, a significant proportion of patients continue to suffer persisting symptoms that can derail normal life,” the researchers wrote.

It can therefore be tough to find accurate data on the prevalence of PTLD, and diagnosis can involve ruling out other health problems.

For their study, the scientists drew on several pools of data to create a model to estimate the number of PTLD cases that occurred between 2016 and 2020. That included data collected by the U.S. Centers for Disease Control and Prevention (CDC), as well as past estimates of Lyme disease rates, survival rates and examples of treatments failing.

A conservative estimate made by the researchers suggested that 69,011 cases of PTLD occurred in 2016, which will rise to 81,509 cases in 2020. In another model, the researchers accounted for cases rising from the 1980s, combined with treatment failing in 20 percent of cases. The result was 1,523,869 cases in 2016 and 1,944,189 forecast for 2020.

The authors acknowledged that it remains unclear which is the most accurate estimation.

“Nevertheless, our findings suggest that there are large numbers of patients living with LD-related chronic illness,” they wrote. Further research is now needed to create tests to accurately diagnose and treat the condition, raise public awareness and arrive at a conclusive figure on the number of sufferers.

While ticks carrying the Lyme disease–causing bacteria can strike at any time of the year, April through September is the riskiest period. The CDC advises avoiding grassy, brushy or wooded areas where ticks can live and treating clothing with 0.5 percent permethrin products and Environmental Protection Agency–approved insect repellents before going into areas where the bugs might lurk.

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LYME GALA 2018 RAISES $1.5 MILLION

The inaugural Lyme Gala 2018 was a moving evening, filled with touching stories and hope for a future without Lyme disease.

The event was a rousing success and we are thrilled to share we raised approximately $1.5 million!  The proceeds from the gala benefit both Project Lyme and Bay Area Lyme Foundation’s critical education, awareness, science and research to end the Lyme disease epidemic!

Thank you to our honoree, Bill Ford, keynote speaker, Dr. Neil Spector, singer/songwriter, Dana Parish, The Janes, and the tireless efforts of our co-chairs, gala committee, advisory members, Board of Directors and everyone who attended this special night.

There is lots of exciting work ahead! We are excited to keep you updated regarding our upcoming plans, accomplishments and the impact your gala gift is making in the fight against Lyme. Until then, thank you so much to those who made Lyme Gala 2018 a success.

You can learn more about how to stay safe from, or what do if you think you may have, Lyme disease at Project Lyme at www.projectlyme.org and Bay Area Lyme Foundation at https://www.bayarealyme.org/.

 

 

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Tick-Borne Disease Working Group Calls for More Resources for Research, Prevention, Diagnostics and Treatment

“The Tick-Borne Disease Working Group, a federal advisory committee established by Congress in the 21st Century Cures Act, issued its first report today. The report recommends a multi-pronged response to address these diseases that affect more than 300,000 Americans each year.

Top recommendations included increases in federal resources to meet urgent research and patient care needs, such as enhanced surveillance, prevention, diagnostic and treatment options. The Working Group identified the following priorities:

  • Improve early and accurate diagnosis and treatment.
  • Strengthen national surveillance.
  • Understand immunological mechanism (for example, pathogen-host interaction) of immune protection for Lyme disease and other tick-borne diseases.
  • Develop new rapid and accurate lab tests.
  • Develop antibiotic combination and/or therapeutic options for treating acute and persistent illness.
  • Encourage the development of strategic plans for tick-borne disease federal investments.
  • Dedicate funding to tick-borne diseases and evaluate related activities using performance indicators and clear metrics for success.
  • Characterize how tick-borne disease affects U.S. national security, military readiness, and the health and wellness of active duty service members, veterans and their families.”

ASH Press Office. “Tick-Borne Disease Working Group Calls for More Resources for Research, Prevention, Diagnostics and Treatment.” U.S. Department of Health & Human Services

Source: U.S. Department of Health & Human Services

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Man with fever, chills and aches in the midst of a flu outbreak turns out to be a very different kind of infection.

“Gabriel Vilchez, the infectious-disease specialist in training, reviewed the chart and examined the patient. He thought that the patient most likely had a tick-borne infection. The hospital had sent off blood to test for the usual suspects in the Northeast: Lyme, babesiosis, ehrlichiosis and anaplasmosis. Except for the Lyme test, which was negative, none of the results had come back yet. Vilchez considered that given the patient’s symptoms — and his response to the doxycycline — it would turn out that he’d have one of them.

And yet, the results for tick-borne infections were negative. Vilchez thought about other tick-borne diseases that are not on the usual panel. The most likely was Rocky Mountain spotted fever (R.M.S.F.). The name is a misnomer: R.M.S.F. is much more common in the Smoky Mountains than the Rocky Mountains, and the spotted-fever part, the rash, is not seen in all cases. It’s unusual to acquire the infection in Connecticut but not unheard-of. Vilchez sent off blood to be tested for R.M.S.F. The following day, the patient felt well enough to go home. A couple of days later, he got a call. He had Rocky Mountain spotted fever.”

Sanders, Lisa M.D. “All His Symptoms Pointed Toward the Flu. But the Test Was Negative.” The New York Times Magazine

Source: New York Times Magazine

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New techniques can detect lyme disease weeks before current tests

“The new tests that directly detect the Lyme agent’s DNA are more exact and are not susceptible to the same false-positive results a3nd uncertainties associated with current FDA-approved indirect tests,” said Schutzer. “It will not be surprising to see direct tests for Lyme disease join the growing list of FDA-approved direct tests for other bacterial, fungal and viral infections that include Staphylococcus, Streptococcus, Candida, influenza, HIV, herpes and hepatitis, among others.”

Source: Science Daily

Direct Diagnostic Tests for Lyme Disease

View Abstract

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Thousands of ticks swarmed a New Jersey woman

Thousands of ticks swarmed a New Jersey woman

The foreign and invasive longhorned tick turned up on a sheep in New Jersey last fall.

Source: NJ.com

 

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Lyme disease-carrying ticks spreading to new areas, scientists warn

Lyme disease-carrying ticks spreading to new areas, scientists warn

The blacklegged tick, which transmits Lyme disease, was identified for the first time in 76 counties in 24 states, a new study by the Bay Area Lyme Foundation found.

Source: NBC News

 

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Lyme Disease in PA: The Danger Lurking in Your Back Yard – A PennWatch Video

Lyme Disease in PA: The Danger Lurking in Your Back Yard

Lyme and Tick-Borne Disease cases in Pennsylvania are soaring. From 2000-2016, the total confirmed Lyme Disease cases have reached more than 83,000. According to the tick testing site TickCheck.com, the CDC’s data only represents confirmed cases, therefore it is very probable that the actual quantity of Lyme Disease cases may be closer to more than 764,000 true cases in Pennsylvania.

How can you prevent a tick bite? Start by looking right in your own backyard.  Flora Posteraro has the story.

Source: Penn Watch

 

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Thousands of ticks swarmed a New Jersey woman

The foreign and invasive longhorned tick turned up on a sheep in New Jersey last fall.

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United tried to block me from carrying daughter’s meds on plane

United tried to block me from carrying daughter’s meds on plane

A Westchester mom said United refused to allow her to board a flight with a carry-on bag full of medical supplies for her chronically ill 22-year-old daughter — and even warned her not to “mess” with the flight crew.

Jill Levy-Fisch of Tarrytown said she and her daughter Sara, who suffers from a host of medical problems, were scheduled to fly from Newark to Halifax in Canada for vacation on June 28.

“Sara suffers from a severe illness that requires constant access to her medications, many administered through her chest port that must be temperature controlled,” she told The Post.

“The bag has a tag clearly indicating medical equipment,” said Levy-Fisch, 54, adding that her family has flown the route often with United, whose flight attendants have always allowed her to stow the bag in a closet.

Levy-Fisch said she had called the United disabilities line and was assured that the medical equipment could not be banned from the cabin.

But she said a gate agent insisted that the bag be checked in for the baggage hold — telling her that she had to remove any medications she needed from the bag if she wanted to bring them into the cabin.

“We told him he’d be checking an empty bag because it only contained medications. We asked to speak with a gate supervisor and he claimed to be one himself,” she said. “He was belligerent, abusive and disrespectful. We asked to speak with a flight attendant.”

The distraught woman said that after the agent accompanied her to the regional jet’s door, berating her along the way, a flight attendant said: “You do not want to mess with this crew.”

“We were shocked, upset and brought to tears. He said we couldn’t bring the medical bag on the plane,” Levy-Fisch said, adding that she had to board without her daughter because some medications were already in Canada and she needed to pick them up from where they were being stored.

Among other ailments, Sara suffers from autoimmune encephalitis, Lyme disease and postural orthostatic tachycardia syndrome, or POTS, a condition in which too little blood returns to the heart while standing up, Levy-Fisch said.

Sara’s carry-on bag contained 30 vials of IV medications, an IV pump, bags of saline, various medications, syringes, a glucose monitor and a sleep apnea device, the mom said.

“She left in tears. This was to be a fun family vacation and she didn’t deserve the treatment she received,” Levy-Fisch said of Sara, who ended up taking a Delta flight the next day.

“Once I boarded the plane, I sat quietly crying,” she added. “The flight attendant approached me to say the pilot wanted to know if I planned to ‘behave’ on the flight.

“I was afraid to say anything as I needed to get the medications at our destination and was concerned they would remove me from the plane.”

Levy-Fisch said she messaged United through Facebook prior to takeoff and was asked to get the flight attendant’s name — no easy task, she said, because he apparently hid his name badge.

Eventually, he relented and gave her his first name — Carlos, she said.

Levy-Fisch, president of the Save Babies Through Screening Foundation, said the airline refunded her daughter’s ticket, but she wanted “to ensure that such unprofessional, demeaning behavior never happens again to another person traveling on United with a disability.”

United spokeswoman Maddie King blamed the debacle on the size of the regional aircraft, which she said has smaller overhead bins that can’t fit larger bags.

“Because of this, there was no space onboard the aircraft to stow this customer’s bag, and it would only fit checked underneath the aircraft,” King told The Post.

But Levy-Fisch said she and her daughter were the first to board, “so they can’t say there wasn’t room in the closet.”

King added: “We reached out to apologize to our customer for this experience, and we refunded her ticket for the flight as a gesture of goodwill,” she said.

“We’ve also reached out to our partners at Express Jet, who operated the flight, and our team in Newark to review the way this situation was handled.”

In a statement, Express Jet rep Jarek Beem said: “We have also reviewed this flight with our crew members and apologize for any disruptions to our customers’ travel plans.”

Source: New York Post

 

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