How Lyme Gets into the Brain Talk This Sunday in Ashland, WI
Archive for the ‘Lyme’ Category
‘ ‘Finally Taking This Seriously.’ On Chronic Lyme disease, a Government Breakthrough’
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.
Update on Wisconsin Lyme Bills – Please Contact Your Representative on AB 313
The following Wisconsin Assembly Bills passed the Senate and Committees in the Assembly:
AB 315, previously LRBs 1758 and 3360 – Requires the DNR to post signs to raise awareness of Lyme Disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after visits to be posted in a common area, such as the park entrance, a trailhead or in a campground, in all State Parks, Forests, Recreational Areas, and Trails
AB 316, previously LRBs 1759 and 3359 – Requires the DNR to sell bug spray with DEET, which can help to repeal ticks, in all State Parks and Forests when their Park or Forest Office or other location in the Park or Forest, such as a concession stand, is open
AB 317, previously LRBs 2738 and 3358 – Requires the DNR to post information in certain Parks brochures to raise awareness of Lyme Disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after visiting a State Park, and requires the DNR to complete an annual awareness campaign in May of each year, which is Lyme Disease Awareness Month, on digital and print platforms to raise awareness of Lyme Disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after spending time outdoors
AB 313, previously LRBs 1652 and 3362 – Establishes a sixteen-member Tick-Borne Disease Study Committee to create a report for the legislature on consensus-based recommendations for policy changes on awareness, prevention, surveillance, diagnosis, reporting, and treatment of Lyme Disease
This last bill would allow Governor Evers to appoint a 16 member advisory panel to offer recommendations on how doctors treat Lyme disease.
Many of us have explained to our representatives about the potential for that bill to go side-ways since nothing about Lyme/MSIDS is agreed upon.
There is still polarity in mainstream medicine on how to diagnose and treat this with many doctors completely ignorant. They continue to tell patients it’s all in their head.
It is also serious government over reach – telling doctors how to treat patients. Imagine for a moment telling doctors how to treat diabetes, cancer, or a broken bone. It just isn’t done.
Please continue to let your representative know we are NOT in favor of such a bill.
Right now the state of Wisconsin has a good handful of doctors treating this appropriately.
We do not want to make things worse for them with a bill that could literally mandate how they treat patients.
Tick Act Bill Renamed & Passed Unanimously
Thank you to everyone who contacted Wisconsin Senator Tammy Baldwin. I’m happy to report that the Tick Act Bill, renamed to the Kay Hagan Tick Act Bill after former U.S. Senator Hagan who recently succumbed to Powassan Virus, passed unanimously through the HELP Committee. It now moves forward to the Senate for a vote.
Politicians are listening due to one thing only – your involvement and effort.
Voice from every U.S. state were heard with over 150 Lyme foundations and organizations along with state the federal organizations.
This is a win for patients.
For more on Ms. Hagan: https://madisonarealymesupportgroup.com/2019/10/29/former-u-s-senator-dies-of-powassan-virus/
More on the Kay Hagan Tick Act: https://madisonarealymesupportgroup.com/2019/06/07/representatives-create-bipartisan-bill-tick-act/
https://madisonarealymesupportgroup.com/2019/06/13/the-tick-act-should-aid-fight-against-lyme-disease-but-will-congress-pass-it-and-will-more-tax-payer-money-go-to-the-cabal/ Tuttle is appropriately concerned and asks the following question regarding research monies:
Excerpt:
Is there a provision within the Tick Act to restrict research funds from the con artists who have characterized Lyme as a simple nuisance disease (Hard to catch and easily treated)?
Patients who fail treatment are kicked to the curb and told they have “Medically Unexplained Symptoms” [3] while ignoring the large body of evidence that we have been dealing all along with an antibiotic resistant/tolerant superbug. [4]
Previous NIH funding for Lyme was under the direction of Edward McSweegan and Philip Baker. Corrective action: The NIH should suspend all funding to researchers with a bias against persistent Borrelia infection particularly those who have been named in the Texas racketeering lawsuit [6] who continue to use taxpayer dollars to fund their ongoing racketeering/propaganda scheme.
There needs to be an immediate shutdown of the “open checkbook” handed to Dr. Gary Wormser by the US Centers for Disease Control (Funding: RO1 CK 000152) with his unethical fixation on the acute stage of disease purposely avoiding the advanced stage which hides the horribly disabled.
Complaint filed with the Office of Research Integrity:
Here is the short list of con artists who were also coauthors of the deplorable Lancet article, Lyme disease antiscience. [7]
Defendants in the RICO lawsuit: (There are many more researchers to be included in this short list)
- GARY P. WORMSER
- RAYMOND J. DATTWYLER
- EUGENE SHAPIRO
- JOHN J. HALPERIN
- LEONARD SIGAL
- ALLEN STEERE
Put an end to the favoritism in research funding for Lyme at the NIH or are we going to experience yet another decade of unimaginable pain and suffering.
Lyme Disease is an Emergency. Instead of Feeding the Hype, We Must Support the Science
https://www.nbcnews.com/think/opinion/lyme-disease-emergency-instead-feeding-hype-we-must-support-science-ncna1062611 Go here for full article
Lyme Disease is an Emergency. Instead of Feeding the Hype, We must Support the Science.
The controversy may be low-hanging fruit, but what we really need to focus on is a motherlode of hopeful research shining new light on the disease.
Oct. 7, 2019
By Pamela Weintraub, health and psychology editor, Aeon
The fight over Lyme disease is one of the hottest topics in medicine right now. Is Lyme underdiagnosed or overdiagnosed? Easily detected with current tests, or often missed? Cured with a 30-day supply of doxycycline or immortal, impossible to treat no matter what? These polarized debates have fueled a series of articles and trend pieces. But as a science journalist covering the epidemic for 20 years, I’ve found the hype can cause confusion. The controversy may be low-hanging fruit, but what we really need to focus on is the motherlode of hopeful research shining new light on the disease.
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**Comment**
I appreciate Weintrabu’s intent, unfortunately, it’s not that simple. Much of the science on Lyme/MSIDS has been done by a white coat wearing Cabal whom have rife conflicts of interests. ConflictReport
For instance, I can not support tick research with the moniker of “climate change” due to the fact ticks have been proven to be marvelously ecoadaptive – and quite able to survive armageddon. You may not feel this important; however, if you saw the number of research articles crossing my desk on a daily basis with the climate change agenda behind it you would appreciate the shear number and amount of dollars going to research that according to independent tick researcher John Scott is a “red herring,” and is a complete ruse designed to get the focus on anything but the real issues surrounding this debacle: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/
For a great interview with Scott: https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/
“I’m an independent researcher,” he tells me. “I can go in any direction I want and, therefore, I haven’t got flawed science. I can move in any direction and not be blocked. That’s the way it should be. If I were tied in with an institution, my work would be influenced and manipulated.“John explains, “The climate change range expansion model is what the authorities have been using to rationalize how they have done nothing for more than thirty years. It’s a huge cover-up scheme that goes back to the 1980’s. The grandiose scheme was a nefarious plot to let doctors off the hook from having to deal with this debilitating disease. I caught onto it very quickly. Most people have been victims of it ever since.”
“This climate change ‘theory’ is all part of a well-planned scheme. Even the ticks are smarter than the people who’ve concocted this thing,” he says.
“Climate change has nothing to do with tick movement. Blacklegged ticks are ecoadaptive, and tolerate wide temperature fluctuations. On hot summer days, these ticks descend into the cool, moist leaf litter and rehydrate. In winter, they descend into the leaf litter, and are comfortable under an insulating blanket of snow. Ticks have antifreeze-like compounds in their bodies, and can tolerate a wide range of temperatures. For instance, at Kenora, Ontario, the air temperature peaks at 36°C and dips to –44°C, and blacklegged ticks survive successfully.
He’s even called out officials doing biased research: https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/Yet, you never hear Scott’s name in the “important: circles due to the fact he purposely stays independent.
Until researchers are allowed to truly investigate things without strings being attached to the money, we will never be told the truth.
I will only support researchers who are doing transparent work and are willing to go against the accepted narrative, and trust me, those researchers are few and far between.
Written
on November 2, 2019