Archive for the ‘Uncategorized’ Category

New Blog Series: Breaking Down the TBDWG Report to Congress

https://www.galaxydx.com/uncategorized/first_tbdworkinggroup_post/

Last month we were excited to see the first report to Congress from the Tick-Borne Disease Working Group. This post kicks off a series that will break the report down into sections based on the group’s major findings. The series will run through the month of December here on the Galaxy Diagnostics blog.

The Tick-Borne Disease Working Group was established by the 21st Century Cures Act, signed into law in 2016. More than 300 pages long, the Act was a sweeping response to many issues in health care brought up from within health care businesses and by members of the public. Some of these health care issues had touched legislators personally, including tick-borne disease.

The working group is a diverse collection of federal and public individuals who came together to combine information from many areas of expertise.  Federal members include representatives of major institutions in health care including the Food and Drug Administration (FDA), the U.S Department of Health and Human Services (HHS) and even the Department of Defense (DoD). Public members include representatives from major research institutions, independent specialists, scientists, and patient advocates. In total, 65 people representing a variety of stakeholders serve on either the main working group or one of the six sub-committees.

The report they have developed was paid for by the people of the United States and belongs to everyone. We have attached to this post the “Core Values to Achieve One Shared Vision” graphic and the patient stories. You can share these pages to raise awareness of tick-borne disease in your community.

The core values statement responds to many of the frustrations patients have had about how tick-borne disease awareness, diagnosis, and treatment are approached by the public health and health care provider communities. Patients have often expressed a sense that they are not being heard and that their health care issues are not being properly addressed, resulting in increased economic burden and a feeling of helplessness.

In this report, the working group clearly states that a renewed collaborative ethos incorporating the experiences and expectations of patients is required to move forward. The values they cite are: respect, innovation, honesty & integrity, excellence, compassion, collaboration, and accountability.

Future posts in this series will discuss issues related to disease surveillance and access to care as well as how the elements of the report come together to look toward improved prevention efforts.

The full report can be accessed here. At that link you can also find out more information about the working group and find a link to the full text of the 21st Century Cures Act.

Sign Up to Receive Blog Updates!  (Click on top link)

 

Review of Literature on Fibrosing Skin Condition Due to Lyme

https://www.ncbi.nlm.nih.gov/m/pubmed/30389325/

Acrodermatitis chronica atrophicans in children: Report on two cases and review of the literature.

Maraspin V, et al. Ticks Tick Borne Dis. 2019.

Abstract

Acrodermatitis chronica atrophicans is a late manifestation of European Lyme borreliosis and is characterized by high levels of borrelial IgG antibodies, slowly expanding skin redness usually beginning on distal parts of extremities, and corresponding histologic findings. It very rarely develops in children. The main prerequisite for the diagnosis is clinical suspicion. In the present article we report on two children with acrodermatitis chronica atrophicans and on the findings of a PubMed literature search on acrodermatitis chronica atrophicans in childhood, published in the past three decades.

_________________

**Comment**

Acrodermatitis chronica atrophicans (ACA) is a fancy way of saying long-term persistence of Borrelia infection in the skin.  

Not a lot is known about this condition but what is known is that lack of adequate or appropriate treatment of early Lyme leads to the condition.  Borrelia’s ability to change antigens thereby messing up the immune response doesn’t help matters either.

As to the “3 stages of Lyme,” folks can jump from stage to stage with no particular rhyme or reason:  https://globallymealliance.org/about-lyme/diagnosis/stages/

One little girl within 4-6 hours after tick bite couldn’t walk or talk:  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

Please see https://emedicine.medscape.com/article/1051695-overview for a slide-show of pictures.  Swelling and a bluish red coloring of the skin are fairly classic symptoms along with numbness, burning, tingling, muscle weakness, and Babinski sign (a reflex movement of the big toe upward instead of downward when the plantar aspect of the foot is stroked, a manoeuvre used to test injury to, or diseases of, the upper motor neurons).

The Medscape article also points out that other genospecies of borrelia have been known to cause ACA. They also point out ACA is often under diagnosed.

Please read this before taking the author’s advice about treatment length:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/.  Then don’t forget the possible involvement of coinfections:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  For the first time, Garg et al. show a 85% probability for multiple infections including not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses.

I’m glad articles like these are coming out.  In order for researchers and mainstream medicine to believe something it has to be published.  But just because something hasn’t been published doesn’t mean it doesn’t exist.  

December 2018 Support Group Meeting

winter-14

Our next support meeting:

When:  Saturday, December 1, 2018

Where:  East Madison Police Station, 809 S. Thompson Dr., Madison, WI

Go here for parking instructions:  https://madisonarealymesupportgroup.com/wp-content/uploads/2017/03/east-dist-parking-visitor-parking.pdf

 

Neuropsych Disorders in Kids: An Interview with Co-Founder of The Stanford PANS Clinic – Dr. Kiki Chang

https://www.neuroimmune.org/dr-kiki-chang.html

Neuropsychiatric Disorders In Children: An Interview with Co-Founder of The Stanford PANS Clinic, Dr. Kiki Chang

10/22/2018

Please go to link for an informative interview with Dr. Kiki Chang, a child psychiatrist with over 22 years of experience whose specialty is working with youth and young adults at risk for serious mood disorders such as depression, bipolar, and PANS/PANDAS and related neuropsychiatric disorders.


 

_____________________
https://madisonarealymesupportgroup.com/2015/10/06/november-dr-brown-on-msids-pandas-pans/  According to Dr. Brown, 80% of his PANS patients have Lyme/MSIDS.

 

 

 

 

Understanding Debilitating LD Symptoms – Podcast with Dr. Spector

Episode 43: Understanding Debilitating Lyme Disease Symptoms

Cindy Kennedy, FNP, is joined by Neil Spector, M.D., who discusses his experience with debilitating Lyme disease symptoms and how to manage them.Dr. Spector is the Sandra Coates Associate Professor of Medicine, an Associate Professor of Cancer Biology and Pharmacology and the Associate Director of Developmental Therapeutics for the Duke Cancer Institute.

Dr. Spector’s work has focused on elucidating molecular mechanisms underlying therapeutic resistance to therapies targeting the Human Epidermal Growth Factor Receptor (HER) family of receptor tyrosine kinases that are involved in the pathogenesis of breast cancer and other commonly occurring solid tumors.

He directed the translational research program that facilitated the successful development and eventual FDA approval of lapatinib (Tykerb), a small molecule inhibitor of the HER2 and EGFR tyrosine kinases, for the treatment of advanced stage HER2 overexpressing (HER2+) breast cancers.

His lab developed the first preclinical models of therapeutic resistance to lapatinib, which identified a novel mechanism of resistance that was published in the Proceedings of the National Academy of Sciences, and served as the scientific rationale for a clinical development program that led to the FDA approval of lapatinib in combination with the aromatase inhibitor letrozole as a first line therapy for patients with HER2+/Estrogen Receptor positive metastatic breast cancer.

His application of translational research to the preclinical and clinical development of lapatinib is widely regarded as a model for of how precision oncology can transform treatment of cancer patients, and facilitate the development of targeted cancer therapies.

Dr. Spector’s research collaborations with colleagues at Duke led to the first clinical trial of a HER2 kinase inhibitor (lapatinib) combined with a HER2 vaccine. He also oversaw the early phase clinical development of nelarabine, an ara-G prodrug that was FDA approved for the treatment of pediatric acute lymphoblastic leukemia. His work with Dr. Tim Haystead (Professor, Cancer Biology and Pharmacology) has led to the identification of novel small molecules that target cell pathways involved in the earliest stages of tumorigenesis, providing an opportunity to prevent breast and other cancers in high risk individuals.

Dr. Spector was recognized by his peers through his selection as a Komen Research Scholar, a group representing the top breast cancer researchers from around the world. He was the recipient of the R. Wayne Rundles Award recognizing outstanding research accomplishments by a Duke investigator, and the Wendell Rosse Teaching Award recognizing excellence in teaching as determined by Duke medical oncology/hematology fellows.

In addition to his Duke research, Dr. Spector was appointed in 2016 to serve as the National Director of Precision Oncology for the VA Healthcare System.

Dr. Spector also detailed his personal 17-year journey with Lyme disease and the life-threatening cardiac complications that ensued, leading to heart transplant in 2009 in his book, “Gone In a Heartbeat: A Physician’s Search for True Healing.”

He was recently awarded a $3.8 million grant to develop molecular targeted therapies for two tick borne illnesses, Borrelia (Lyme disease) and Bartonella.

Dr. Spector earned an undergraduate degree at the University of North Carolina-Chapel Hill and an M.D. from Rutgers-New Jersey Medical School. He completed his internal medicine residency training at Parkland Hospital, University of Texas-Southwestern Medical Center, Dallas and a Medical Oncology/Hematology/Bone Marrow Transplantation fellowship at Massachusetts General Hospital and Dana-Farber Cancer Institute, Harvard Medical School.

______________

For more:  https://madisonarealymesupportgroup.com/2018/03/06/lyme-innovation-dr-neil-spector/

https://madisonarealymesupportgroup.com/2017/08/23/video-dr-neil-spector/

https://madisonarealymesupportgroup.com/2016/07/01/dr-spector-on-fox-5-ny/

https://madisonarealymesupportgroup.com/2016/02/22/lyme-equivalent-of-cancer/

https://madisonarealymesupportgroup.com/2017/06/03/dr-neil-spector-and-dr-rawls-on-peoples-pharmacy-radio-program/

https://madisonarealymesupportgroup.com/2017/06/21/spector-rawls-interview-on-lyme-disease/