TO CLOSE

Tick-borne diseases can cause serious diseases, including Lyme disease. Throughout New Jersey, ticks are found in wooded and grassy areas. Here's what to do after a family hike to protect yourself from tick bites.
Russ Zimmer

"Let's hope it breaks the deadlock on Lyme disease," said Pat Smith, a Wall resident and leading advocate for children's rights.

Although the number of new cases of Lyme disease reported has averaged less than 25,000 over the last decade, a federal task force has met to attacking tick-borne diseases argues that the actual number is 10 times larger and recommends developing a better test to detect bacterial infection.

The 100-page report to Congress, the first in a series of three in four years, is critical as it represents a consensus on how to treat Lyme disease after decades of disagreement between government officials and officials. medical experts.

Disarray has led to an explosion of cases across the country – from less than 13,000 people in New England about 20 years ago to nearly 30,000 in 2017, according to the latest available information – say advocates of patients with Lyme disease.

"It's a good first step," said Pat Smith of Wall Township, New Jersey, a member of the 14-person working group. "Let's hope we are going out of the stalemate on Lyme disease."

► August 16th: A brown dog tick triggered an outbreak of fever in Mexico. The United States may be the next.
► August 7th: Health officials sound the alarm while an invasive tick, new to the US, is spreading
► July 12th: First Rocky Mountain Spotted Fever Death in Wisconsin Confirmed

Lyme disease has existed for thousands of years, but in the United States, it was first recognized in 1975 in a group of children and adults living around Lyme, in Connecticut, who had symptoms similar to those of arthritis. In 1982, researchers discovered that infected blacklegged ticks transmitted the Borrelia burgdorferi bacterium in humans, causing an infection with fever, headache and fatigue that can spread to the joints, heart and nervous system if it is not treated.

"Patients still have difficulties and doctors have trouble treating them," she said. "I hope it will be a revelation for Congress."

In the 1980s, the infection affected two of Smith's daughters, one of whom missed four years of schooling. She founded the non-profit association for Lyme Disease and traveled the country to raise awareness.

"Now the big question is what Congress will do in light of these recommendations?", She said.

Due to the difficulty in finding the bacteria responsible for Lyme disease (false positives and false negatives are common), the working group stated that further research into the diagnosis of all tick-borne diseases could save money in the country in the long run.

► June 12th: Paralysis of ticks: a 5-year-old could not walk, had trouble talking
► May 23: What you need to know about tick diseases, how to eliminate them

Representative Chris Smith, RN, who advocated for the creation of the group, called for "a coordinated and comprehensive federal response, including more research funding" in response to the report.

At the top of the list is being tested. The report highlights the weaknesses of the usual practice of testing Lyme disease by means of "serological tests" or blood tests that look for antibodies. It is notorious that this form of testing is unreliable for detecting Lyme disease, especially in the crucial early stages of infection.

Pat Smith of Wall Township, New Jersey, left, with Representative Chris Smith, R-New Jersey, whose legislation helped create the Lyme Disease Working Group. (Photo: J.Lynagh, Lyme Disease Association Inc.)

According to the report, 10-20% of Lyme patients diagnosed at an early stage have symptoms of six months or more after diagnosis and treatment. People diagnosed later may end up with chronic Lyme disease and still have problems even after the cure for the infection.

The report recommends that the federal government invest in the development of new testing techniques. He also suggests exploring specific ways to better test the children, who would constitute up to half of the infected population.

► May 8th: The CDC apologizes for hiding ticks on a muffin to prevent Lyme disease
► May 7th: Lyme disease explained: Symptoms, treatments, states where cases occur

"The most important thing we all agree on is that we need new types of tests for Lyme disease," Pat Smith said. "We also need new types of therapeutic options for the treatment of acute Lyme disease as well as for those with a persistent disease."

Another aspect of the report is that the national surveillance system for tracking tick-borne diseases needs to be strengthened.

"Right now, frankly, it's a mess, even (in terms of registration) the type of ticks we're looking at in different states," she said.

► May 2nd: Ticks, mosquitoes, triple flea diseases; The United States is not fully prepared, says CDC
► July 2017: How Lyme Disease Could Trigger Hundreds of Suicides

The report includes stories of people suffering from tick-borne diseases. After years devoted to helping desperate patients cope with the horrific stories of a widely misunderstood disease, Pat Smith hoped the report would reflect some of the Lyme victims.

"It's about what patients experience trying to get diagnoses and treatment," she said. "All kinds of problems are brought to the fore for a change."

Follow Jerry Carino on Twitter: @NJHoopsHaven

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