https://chrissmith.house.gov/news/documentsingle.aspx?DocumentID=406193
October 30, 2019
By Jerry Carino of the Asbury Park Press
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.”
Marlboro’s Jodie Dashore, a chronic Lyme disease survivor and a practitioner who treats others with the condition, speaks at Friday’s press conference in Wall. At left are Wall resident Pat Smith, president of the Lyme Disease Association (far left) and Rep. Chris Smith (second from left). (Photo: Jerry Carino)
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 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.”
Raw: Rep. Chris Smith on why Lyme disease legislation fails in Congress Jerry Carino, @njhoopshaven
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.
Long-awaited commitment
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.”
Jerry Carino is news columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.
This article originally was published online Oct. 28, 2019 and ran in print on page one of the Asbury Park Press Oct. 29., 2019 edition. It can be found online at:
https://www.app.com/story/news/health/2019/10/28/chronic-lyme-disease/4061422002/
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**Comment**
If you watch Congressman Smith’s video here: https://www.app.com/videos/news/health/2019/05/30/raw-rep-chris-smith-why-lyme-disease-legislation-fails/1283927001/, he comments that never in his 39 years in Congress has he seen such pushback when it comes to legislation concerning Lyme disease.
Please raise Holy hell to those representing your state. Things won’t change until we make them change. Do not let your Congressman rest for a moment. Let them know you are onto this complete betrayal of public trust when thousands upon thousands are allowed to suffer untold agony due to tick borne illness.
The IDSA is NOT our friend. They purposely blocked Lyme bills for decades knowing doctors would follow their lead. These fraudsters are quivering now that the tide is finally turning, but NEVER forget they are they are the ones behind all the pain and suffering.
I’ve written this before but according to one prominent Lyme literate doctor in Wisconsin, 80% of his Autistic patients have Lyme. Treating the infection is key for all.
Acknowledging the chronic/persistent form of Lyme is also key for moving forward. Why this hasn’t happened before now is a head scratcher considering there are over 700 peer-reviewed articles showing it: Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy
For far too long mainstream medicine has had its head in the sand. The results have been disastrous.
