‘Finally taking this seriously.’ On chronic Lyme disease, a government breakthrough
Jerry Carino, Asbury Park Press
Updated 1:31 p.m. ET Oct. 28, 2019
After a push from Jersey Shore-based advocates, the National Institutes of Health issued a long-awaited strategic plan. Sufferers expressed relief.
WALL – Brian Dashore was a second-grader attending Little League practice one day when, seemingly out of nowhere, he collapsed. Assuming fatigue, the Marlboro resident went home and slept.
“The next day I woke up with severe pain in my hips and legs,” he said. “I was like that for two years.”
At first doctors suspected juvenile arthritis. Then cancer. Finally, after 10 false negatives, he tested positive for Lyme disease. By then, much of the damage was done. He spent nearly two years in a wheelchair, and it took eight years of treatment to fully turn the corner.
“I’ve had debilitating pain in my legs, brain fog, motor ticks, head shaking,” he said. “It’s like a hiccup that you can’t control. I could not concentrate at all.”
Now Dashore, a senior at the Academy of Allied Health and Science in Neptune, is an advocate for other teens with chronic Lyme. That’s what brought him to Friday’s press conference conducted by U.S. Rep. Chris Smith and Wall resident Pat Smith (no relation), president of the national nonprofit Lyme Disease Association. The news: After decades of foot-dragging, the National Institutes of Health has formulated a strategic plan for tick-borne disease research.
A breakthrough on chronic Lyme
For those who pay close attention to the matter: There are three references in the 25-page strategic plan to “persistent” and “long-term” symptoms — a long-awaited formal acknowledgement from the federal government that sometimes the standard course of treatment for Lyme and related infections (a 2-4 week course of antibiotics) isn’t enough, especially when diagnosis isn’t prompt. And diagnosis for those who don’t present a rash can be elusive because, as the document outlines, the standard blood test for Lyme is spotty at best.
“For some TBDs (tick-borne diseases), patients report long-term symptoms following treatment or i
“For some TBDs (tick-borne diseases), patients report long-term symptoms following treatment or in the absence of prompt treatment,” the report notes. “Reported illnesses often include musculoskeletal, rheumatological, cardiovascular, neurological, and neuropsychiatric symptoms, among others. For TBDs, optimal treatment of these symptoms may involve antibiotic and/or other treatment regimens. NIH will support research on the mechanisms leading to these symptoms and on treatments to improve outcomes.”
Until now, absent official recognition by the medical establishment, chronic Lyme patients have had few places to turn to for treatment. While the NIH’s strategic plan isn’t an instant game-changer — it’s more starting point than conclusion — it does open the door to normalizing care for what has been a marginalized community of sufferers.
“It’s disgraceful this wasn’t done sooner,” said press conference attendee Deborah Scatuccio, a Jackson resident whose family has been tormented by tick-borne diseases. “I wish this could have happened a long time ago. It would have saved my children a lot of suffering. It’s great that the government is finally taking this seriously.”
‘They went through hell’
Scatuccio was living in Howell in the early 1980s when her two young daughters contracted Lyme disease. Monmouth County is one of the Lyme hotspots in New Jersey, which has the second-most reported cases of any state, behind only Pennsylvania.
“My daughters became very ill and this went all the way up to their college years,” Scatuccio said. “They went through hell, they were so sick.”
Scatuccio herself was diagnosed with Babesiosis, a Lyme co-infection.
“It was a horror story,” she said. “I went blind for three months because it infiltrated my eye.”
More recently, her 5-year-old grandson was diagnosed with Lyme, although he recovered after prompt treatment.
“I speak to hundreds of people a week through LDA (the Lyme Disease Association),” Scatuccio said. “So many people have the same story.”
The LDA was formed in the 1980s after Pat Smith’s two daughters came down with chronic Lyme. One of them missed four years of school. So poorly understood was Lyme at that time, Smith said, that she could find information only at Naval Weapons Station Earle.
“What do we not have after all this time? A definitive test,” Smith said Friday. “It’s less than 50 percent accurate. How’s that for something that could determine the rest of your life?”
Smith’s advocacy got the attention of Chris Smith, who began pushing the issue in Congress. In 2016 he helped establish a federal working group bringing together doctors and advocates, including Pat Smith, to chart a course forward. The group’s inaugural report, filed last year, laid the groundwork for the NIH’s strategic plan.
“Our government, like an ostrich really, had its head in the sand,” said Chris Smith, a Republican whose 4th District stretches across parts of Monmouth, Ocean and Mercer counties.
Also speaking at the press conference was Jodie Dashore, Brian’s mother, herself a chronic Lyme survivor. Dashore possesses a doctorate in occupational therapy, and her family’s experience with Lyme prompted her to dedicate her practice, the BioNexus Health Clinic in Marlboro, to tick-borne diseases.
“I see patients of all ages, severely debilitated, lives turned upside down, childhoods and livelihoods lost because the disease went unrecognized and became chronic,” she said.
Chronic Lyme’s lack of recognition by the medical establishment, she said, means insurance companies won’t cover most treatment beyond the standard 2-4 week course.
“The economic burden on families is vast,” Dashore said. “There’s often tragic consequences.”
Dashore’s own research on the subject includes exploration of Lyme’s ability to pass from a mother to a baby in gestation — which she believes was the case with her son — and a suspected link between tick-borne diseases and autism.
“Can you even imagine autism (in some cases) being a symptom and not necessarily a syndrome on its own when someone has severe Lyme disease?” Dashore said.
Added Pat Smith: “I know individuals who have been diagnosed with autism, and when they were treated for Lyme disease, their autistic manifestations disappeared.”
The NIH’s report doesn’t go there. But it does herald a long-awaited government commitment to unravel Lyme’s mysteries. Chris Smith projects a tripling of the NIH’s expenditure on related research from the current $28 million budget.
That’s music to the ears of Brian Dashore, who is out the woods but does his part by maintaining a website on the subject, TeenLymeHub.com.
“This should make it easier for patients to be treated,” he said. “Hopefully that will help people get better.”