Archive for the ‘Lyme’ Category

Suspect Lyme Carditis? Start Empiric Antibiotics, Case Report Suggest (And Lyme Carditis is Not Rare!)

https://www.medscape.com/viewarticle/920145

Suspect Lyme Carditis? Start Empiric Antibiotics, Case Report Suggest

By Jennifer Garcia

October 21, 2019

Lyme carditis, caused by infection with the spirochete Borrelia burgdorferi, is a rare but potentially fatal complication that may be prevented with rapid empiric antibiotic treatment.

In a new case report, public health officials describe two patients from areas where Lyme disease is endemic. The patients presented with vague, nonspecific signs and electrocardiogram (ECG) changes suspicious for Lyme carditis.

Although borreliosis was suspected and was tested for, neither patient received antibiotic therapy while awaiting test results, and both subsequently died.

“Guidelines recommend simultaneous initiation of empirical antibiotic therapy and Lyme serologic testing when Lyme carditis is suspected. Lyme carditis can progress rapidly, and waiting for confirmatory diagnostic therapy to initiate antibiotic treatment may result in negative outcomes,” write Grace E. Marx, MD, MPH, from the Centers for Disease Control and Prevention in Fort Collins, Colorado, and colleagues.

The authors note that their objective in reporting the cases was

“to remind clinicians of the importance of early recognition and treatment of Lyme carditis.”

The report was published online today in the Annals of Internal Medicine.

The first patient was a 57-year-old man from Vermont who had a 1-week history of fever, fatigue, chest pain, and shortness of breath. Erythematous macules were noted on the trunk, and ECG revealed first-degree atrioventricular block. Despite consultation with an infectious disease physician and positive results for B burgdorferi, antibiotic therapy was not initiated, and the patient died 12 days after initial presentation.

The second patient was a 49-year-old woman from Massachusetts who presented with nausea, vomiting, and severe headache. A CT scan and an ECG were normal. The patient was discharged with antiemetics and analgesics. Two weeks later, she reported syncopal episodes, fatigue, as well as bladder and bowel incontinence. An ECG demonstrated atrioventricular dissociation. Continuous cardiac event monitoring and Lyme testing were ordered. Two days later, results of Lyme testing came in positive, and antibiotics were dispensed. The patient died the following day, before the first antibiotic dose was taken.

Postmortem histopathologic evaluation of heart tissue in both patients revealed

“lymphohistiocytic pancarditis with immunohistochemical and molecular evidence of B burgdorferi.”

The authors acknowledge that Lyme carditis is rare and that only nine other fatal cases have been reported in the literature. However, given the risk for rapid progression in these patients, current guidelines recommend

“temporary pacing by an external pacemaker for patients with symptomatic or high-risk electrocardiographic features.”

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**Comment**

I pray to God that this information is getting to doctors.

Please know Lyme carditis is NOT RARE!  It’s just rarely reported. Also, the fact there are already nine known fatal cases in the literature should cause every doctor to pause and consider. ER doctors also need to know this as many people start off in the ER with heart symptoms but are sent home when they can’t seem to find anything initially.  Unfortunately it isn’t until the heart issues become much more severe or end in death that they are taken seriously.

How many more have to die before doctors wake up?

I personally know patients with serious heart issues that were pooh poohed by doctors. I hope they are still alive.

In this article, CDC expert Dr. Forrester comments that 4-10% of Lyme patients get carditis.  If we take the CDC’s estimate that 300,000 people contract Lyme each year, that’s 12,000 –  30,000 with Lyme carditis. https://madisonarealymesupportgroup.com/2019/02/21/diagnosis-treatment-of-lyme-carditis/

Does that sound rare to you?

https://madisonarealymesupportgroup.com/2018/07/09/with-unexpected-death-autopsies-should-look-for-lyme-carditis/

Excerpt:  “Lyme expert Dr. Daniel Cameron has done a nice job of summarizing five cases in a blog. http://danielcameronmd.com/autopsy-study-reviews-cases-due-to-sudden-cardiac-death-from-lyme-disease/
Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
Excerpt:

“Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”

Please get the word out.  Enough people have died.

Category:

Heart Issues, Lyme, research, Treatment

Wisconsin Tick-Borne Illness Center of Excellence Open But Needs Practitioners

Wisconsin Tick-Borne Illness Center of Excellence Now Open

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Northern Wisconsin has opened its first lyme and tick-borne illness treatment and research center.

Inspired by Jeff and Jillayne Waite and the tragic loss of their beautiful daughter Jen to tick-borne illness and brought to fruition by the tireless efforts and compassion of the Women’s Legacy Council and the Howard Young Foundation, Jen’s spirit will live on.

The Center of Excellence is under the direction of Dr. Andy Kogelnik of the Open Medicine Institute. Connie Campbell RN, BSN is the Clinic Program Director, Kathy McCaughn is the Office Manager and Katelyn Dallman is the Research Associate. The Advisory Board is comprised of Dr. Brian Fallon MD Columbia University, Dr. Neil Spector MD Duke University and Dr. Samuel Shor MD past President of ILADS.

Dr. Kogelnik is currently seeing patients on a limited basis so the Center is actively looking for practitioners interested in working at the clinic. There is currently a patient waiting list. The Howard Young Foundation is fund raising to support the clinic through it’s early stages so please support if so inclined. Please direct all inquiries to the Howard Young Foundation  https://www.howardyoungfoundation.org/tick-borne-illness/

Address: 240 Maple St.

Woodruff, WI. 54568

Located in the Howard Young Medical Center, Woodruff, WI.

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For more:  https://madisonarealymesupportgroup.com/2019/01/11/wisconsin-tick-borne-illness-center-of-excellence/

https://madisonarealymesupportgroup.com/2019/07/02/wisconsin-public-radio-on-tick-borne-illness-center-of-excellence/  Interview with Dr. Kogelnik

https://www.howardyoungfoundation.org/tick-borne-illness/

 

 

Category:

Activism, Lyme, Treatment

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How Lyme Gets into the Brain Talk This Sunday in Ashland, WI

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Written

on November 2, 2019

‘ ‘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.”

08f7862a-2240-41de-9644-19e2c39adebd-lyme_presser_1Marlboro’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.

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.

 

 

 

 

Category:

Activism, Lyme

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.

 

 

 

Category:

Activism, Lyme, Ticks, Uncategorized