Archive for the ‘Uncategorized’ Category

December Meeting Reminder

Don’t forget our upcoming meeting on Saturday, December 9:  https://madisonarealymesupportgroup.com/2017/11/08/madison-december-support-group-meeting/

And for you planners out there, Debra Muth ND of Serenity Health http://www.serenityhealthcarecenter.com/about-us/debra-muth-nd/  will be speaking Saturday, January 27 from 2:30-5 at the East Madison Police Station.  Her topics will include mold/endo & exotoxins.

Also, to check for meetings, go to the upper right hand corner of the website and click on the tab that says “meetings.”  Also, you can type it into the search bar on the website as well.

 

 

FDA Approves Tracking Device for Pills Raising Huge Privacy Concerns

https://www.theverge.com/2017/11/14/16648166/fda-digital-pill-abilify-otsuka-proteus

The FDA has approved the first digital pill

Abilify MyCite raises new privacy concerns

Example of a digital medicine system
 Photo: Proteus Digital Health

The Food and Drug Administration has approved the first digital pill for the US which tracks if patients have taken their medication. The pill called Abilify MyCite, is fitted with a tiny ingestible sensor that communicates with a patch worn by the patient — the patch then transmits medication data to a smartphone app which the patient can voluntarily upload to a database for their doctor and other authorized persons to see. Abilify is a drug that treats schizophrenia, bipolar disorder, and is an add-on treatment for depression.

The Abilify MyCite features a sensor the size of a grain of sand made of silicon, copper, and magnesium. An electrical signal is activated when the sensor comes into contact with stomach acid — the sensor then passes through the body naturally. A patch the patient wears on their left rib cage receives the signal several minutes after the pill is ingested. The patch then sends data like the time the pill was taken and the dosage to a smartphone app over Bluetooth, and must be replaced every seven days. The patient’s doctor and up to four other people chosen by the patient, including family members, can access the information. The patient can revoke access at any time.

Example of a digital medicine system
 Photo: Proteus Digital Health

The pill comes after years of research and is a venture between Japanese pharmaceutical company Otsuka and digital medicine service Proteus Digital Health, which makes the sensor. The pill is one way to address the prevalent problem of patients not taking their medication correctly, with the IMS Institute estimating that the improper and unnecessary use of medicine cost the US healthcare sector over $200 billion in 2012. The approval also opens the door for pills that are used for other conditions beyond mental health to be digitized.

Example of a digital medicine system
 Photo: Proteus Digital Health

Experts though, have expressed concerns over what the pill might mean for privacy. Some are worried that tracking pills will be a step towards punishing patients who don’t comply. Ameet Sarpatwari, an instructor in medicine at Harvard Medical School told The New York Times the digital pill “has the potential to improve public health. [But] if used improperly, it could foster more mistrust instead of trust.”

The Wall Street Journal reports that the FDA is anticipating a potential raft of approval requests for other digital pills. A spokesperson told the publication the FDA is planning to hire more staff with “deep understanding” of software development in relation to medical devices, and engage with entrepreneurs on new guidelines.

Otsuka hasn’t indicated how much the digitized Abilify pills will cost yet. The WSJ reports the company plans to work with some insurers in covering the digitized pills with production planned to be ramped up only if it can find willing insurers.

Correction November 16th, 11:07am ET: A previous version of this story listed additional features in the MyCite patch that were listed on the manufacturer’s website. The story has been changed to reflect the FDA-approved features.

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**Comment**

This information ends up in cyberspace opening up the potential for hacking and exploiting people’s personal information.

Novartis introduced a “smart pill” technology in 2010 as a tracking technology for use in all types of pharmaceuticals.  https://www.cbsnews.com/news/a-microchip-smart-pill-fuels-delusions-inside-and-outside-novartis/

 

 

 

 

 

Take-aways from the ILADS Conference

https://globallymealliance.org/highlights-ilads-boston-2017/  by Jennifer Crystal

ILADS image

A LYME WARRIOR’S TAKE ON ILADS BOSTON 2017

TICK-BORNE DISEASES: THE GLOBAL PERSPECTIVE

 

ilads

This past weekend, November 9 through 12,  I had the opportunity to attend the International Lyme and Associated Diseases Society(ILADS) conference in Boston. For four days I woke up at 5:30 a.m. so as to be ready for even the earliest sessions, where I spent hours learning about topics such as hypothalamic and pituitary function, extracorporeal photopheresis, and mycotoxin-induced immuno suppression. You would think so much medical jargon would cause a mental meltdown in a Lyme patient such as myself.  But the truth is, I loved every minute of it. Even without a degreed physician’s grasp of the science, I was able to glean the big picture of the conference, which was inspiring and empowering, and filled me with hope. I left feeling invigorated.

As a Lyme warrior and a writer, I strive to serve as a communication liaison between doctors and patients. I hope to make patient narratives accessible and meaningful to physicians, and I try to translate scientific material into readable layman’s terms. So, let me  share with you my overall takeaways from the ILADS conference:

TICK-BORNE ILLNESS IS A WORLD-WIDE PROBLEM

The theme of this year’s conference was “Tick-Borne Diseases: The Global Perspective.” Medical professionals and patient advocates came from 20 countries and 41 states including Alaska and Hawaii, and presenters spoke about the latest research and statistics from research institutions in North and South America, Europe, Africa and Australia. I learned about strains of  Borrelia—the bacterium that causes Lyme— in Russia and Iran. Brazil has its own exotic tick-borne illness that mimics Lyme, called Baggio-Yoshinaro syndrome. Worldwide, there is an urgent need for research and better testing, but the good news, according to Dr. Christian Perrone, Professor of Infectious and Tropical Diseases on the Faculty of Medicine Ile-de-France Ouest, is that awareness is spreading in both the public and medical sectors. There is some exciting treatment research being undertaken, too. Dr. Omar Morales, founder of Lyme Disease Mexico, is taking a hematological approach, looking at ways to remove bacteria from the blood.

WE STILL NEED BETTER DIAGNOSTIC TESTS, BUT SOME ADVANCES ARE BEING MADE

Current tests for Lyme disease are unreliable. Dr. Brian Fallon, Director of Columbia University’s Lyme and Tick-Borne Disease Research Center, pointed out that the standard two-tiered ELISA and Western Blot test, which only has a 40% accuracy rate, was developed in 1994—10 years before there were iPhones, and years before we even had email. In his talk “The Good News About Lyme Research,” Dr. Fallon referred to testing as a “fishing expedition.” The ILADEF Power of Lyme Award recipient, activist Jenna Luché-Thayer, said that beyond faulty diagnostic tests, there are also problems with spotty, misleading surveillance; nebulous medical coding; misinformed policy; insufficient research; and, of course, politics. Researchers are working on new tests,  including one that is cellular based, and one that looks at DNA sequencing, which would allow doctors, in Dr. Fallon’s words, to “cast a wider net.” The DNA sequencing test can identify an unknown pathogen in several days. Moreover, scientists are working on vaccines, and are trying to genetically engineer mice to produce Borrelia-killing antibodies. “There’s lots of reason for hope,” Dr. Fallon said. “Science is bridging the great divide.”

WE NEED AN INTEGRATIVE APPROACH TO TREATMENT

Patients often ask me, do you recommend taking antibiotics? Or going the natural route? I always respond that what worked best for me was a blend of Western and Eastern modalities, known as Integrative Medicine. Lyme is a bacterial infection, and antibiotics kill spirochetes. In my experience, homeopathic remedies, nutritional supplements, diet, and other therapies like cranial sacral or neurofascial processing are adjuncts only that can complement but not replace the need for FDA approved medication. The lectures I heard at ILADS reinforced the idea that the best approach to treating tick-borne illness is a holistic one, which incorporates antibiotic treatment, immune reinforcement, nutritional supplements, and lifestyle changes that support well-being and detoxification.

In his talk on eliminating infection, Andrew Petersen, DO, Chief Physician and Founder of  Whole Earth Medical Group, Utah, outlined a history of medical theories. The Miasma Theory, accepted from ancient times through the 1880s, postulated that dirty air, water, and bad energy cause illness. We then had Pasteur’s Germ Theory, which posited that specific microorganisms are the cause of specific diseases. Then there was the Béchamps Host Theory that illness is caused by a host having insufficient defense to pathogens.

Dr. Peterson called all of these theories “true, but not true enough; and wrong, but not completely wrong.” Modern Combined Theory looks not just at the pathogen, but also at the host. Infection is part of the picture, but so is the immune system’s ability to respond to it, which can be influenced by body toxin levels. The standard paradigm for treating Lyme disease is to try to eradicate the infection, but the Infectious Diseases Society of America (IDSA) and ILADS have long argued over how long that should take.

Conversely, Dr. Petersen contends, complete assessment of Lyme should include infection, immune dysfunction, and toxins (such as mold, mercury exposure, and toxins built up in the body and brain by both the infection and its subsequent die-off of infection). Other speakers also called for such an integrative approach.

We also need to look toward precision medicine, a model that customizes care for individual patients, especially since every case of tick-borne illness is different and there is no set treatment protocol. Understanding infection, inflammation, and autoimmunity will helps doctors to “make personalized medicine, so we can better treat our patients,” said John Lambert, MD, PhD, of the Dublin, Ireland Infectious Disease Clinic.

EVERYTHING FROM RESEARCH TO DIAGNOSIS TO TREATMENT SHOULD BE PATIENT-CENTRIC

Patients are the sick ones, so it only makes sense for their experience to inform research, diagnosis and treatment of tick-borne disease. As Dr. Lambert said, “We need to treat the patients, not the laboratory tests”—especially when those tests are so unreliable.

In her presentation “The Value of Using Big Data in Lyme Disease,” Lyme Disease.org’s‘s CEO Lorraine Johnson J.D., M.B.A., called Lyme “a researched orphaned disease.” The last federal treatment trial for Lyme was funded over 15 years ago. LymeDisease.org has created MyLymeData, where patients can register and provide information that can serve as a research platform to affect quality of care and policy change. Johnson said, “Patient registries are a research game changer…allowing people to act based on best past practice, not best available evidence.”

Another area that needs a patient-centric shift is health insurance. Medical treatment should be determined by physicians, not insurance companies. This was something Sheila Statlender, Ph.D., of the Massachusetts Lyme Legislative Task Force, worked hard for. The Task Force got an act passed in 2016 that requires Massachusetts insurance companies to cover long term antibiotic therapy for the treatment of Lyme. While the legislation has its loopholes, it’s a model toward more sensible statutes in other states. In her presentation “Update on Local Lyme Activism,” Dr. Statlender said that such legislation “empowers licensed physicians to use their clinical skills appropriately,” and that’s good news for patients!

Though there is still much work to be done, Lyme awareness and research have come a long way. Nowhere was that truth more evident than at the ILADS conference. Whether or not you know what the glymphatic system is or understand why chemokine CCL-19 remains elevated among patients with post treatment Lyme doesn’t matter. For patients, what matters most is this: there were 750 people at this year’s ILADS conference. That’s 750 researchers, doctors, and advocates on the front lines of tick-borne illness, working every day to make life better for patients like you and me.


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her atjennifercrystalwriter@gmail.com

 

Parental Rights Amendment Introduced in U.S. House

I’ve written about the Parental Rights Amendment before, but to recap, please watch this brief 1 minute video.

This link also explains why giving parents the authority over medical decisions for their child is crucial :  https://madisonarealymesupportgroup.com/2017/04/20/why-we-need-the-parental-rights-amendment/ It gives real life stories of children taken from their parents over medical decisions.

Parents of Lyme/MSIDS minor patients have been accused of child abuse and have suffered greatly over the issue of tick borne illness:  https://madisonarealymesupportgroup.com/2017/08/24/dutch-lyme-patients-accused-of-child-abuse/  This is happening in the U.S. as well but nobody’s keeping score.

________________

https://parentalrights.org/wp-content/uploads/2017/11/PRA-Introduced-in-House-1.pdf

Press Contact: Michael Ramey Director of Communications & Research 540.751.1200

Media@parentalrights.org

Amendment on Parental Rights Introduced in U.S. House

FOR IMMEDIATE RELEASE // November 16, 2017 // Washington, D.C. –

Representative Randy Hultgren (R-IL) introduced legislation in the U.S. House to propose a Parental Rights Amendment to the U.S. Constitution. Hultgren’s House Joint Resolution 121 had 15 original cosponsors at its introduction on Thursday, November 16. A parallel resolution, SJRes. 48, was introduced in the Senate by Sen. Lindsey Graham in August.

“The freedom for parents to direct the upbringing, education, and care of their children is an American tradition once established beyond debate,” said Rep. Hultgren. “Yet every day, families are broken apart by state actors who presume they are able to make a better decision for a child than a parent can. With recent state laws and court decisions threatening this American value, it is time parental rights are enshrined as fundamental rights and therefore protected under the Constitution.” “We are grateful to Representative Hultgren for taking up this vital issue before Congress,” says ParentalRights.org President Jim Mason, a proponent of the resolution.

Parental rights is a crucial battle that too few are talking about. Every other question, whether of politics, religion, values, or ideology, hinges on the right of good parents to raise their children in a way that is true to them.” The Amendment, which would provide that “[t]he liberty of parents to direct the upbringing, education, and care of their children is a fundamental right,” requires a two-thirds vote in each house of Congress to go to the states for ratification. This means bipartisan support will be necessary for its passage.

“Parental rights affect us all, regardless of race or belief, across every community or demographic,” says Detroit-area family law attorney Allison Folmar. “Absolutely, this Amendment should have bipartisan support. In fact, it should have universal support.”

The NFL’s 2005 MVP Shaun Alexander is also among those supporting the Amendment effort. Alexander is vice president of ParentalRights.org. “I am still amazed with how much authority the courts have over parents’ rights today. With the Parental Rights Amendment now introduced in both houses of Congress, we can begin to push back and win for all parents authority for how to raise their own children. The Parental Rights Amendment will protect the greatest team ever assembled—the family.” Representatives interested in cosponsoring H. J. Res. 121 should contact Doug Thomas in Representative Hultgren’s office.

https://www.house.gov/representatives/find/  Find and call your rep here.

**Comment**

For those of you with Lyme/MSIDS, please contact your Representative and encourage them to support the Parental Rights Amendment.  Families with Tick borne illness are suffering untold misery.  Children suffer as often they don’t have enough experience and verbal skills to describe what they feel.  TBI’s need to be on every doctor and health professional’s radar, and teachers need to be educated on what to look for.

For an excellent article and resources on children with Lyme/MSIDS:  https://www.lymedisease.org/lyme-basics/lyme-disease/children/

http://danielcameronmd.com/lyme-impact-school/

Great pdf by Dr. Ann Corson:  http://www.lymepa.org/HopetoHealPediatricLymeTalk.pdf

A review of “When Your Child Has Lyme Disease:  A Parent’s Survival Guide,”:  https://www.huffingtonpost.com/john-mccormick/when-your-child-has-lyme-_b_8885982.html

As Berenbaum writes,

I urge you to greet every morning as a new day. Do what needs to be done,
and learn what needs to be learned. Don’t burden yourself with worry about
what is still to come. You and your family can get past the trials and
tribulations of this moment, fostering a resilience that will carry you through
to the future. My hope is that you will not only survive Lyme disease, but
triumph over it.

Great words to live by.

Support group for parents:  https://groups.yahoo.com/neo/groups/lymeparents/info

Live-tweets from ILADS

https://www.lymedisease.org/lyme-sci-ilads-2017-tweets1/

Here’s a running list of what Lonnie Marcum tweeted the first day, Nov. 10. Stay tuned for tweets from Day 2 and 3.

Interesting posts:

  • No test for many emerging species of Borrelia. #LymeDisease doesn’t fulfill Koch Postulates so adds to controversy.
  • Big problem with test for #LymeDisease is that it DOES NOT detect species commonly found in Europe, Australia & other countries
  • “the lexicon of Lyme is very confusing for scientists” How do you define a disease so frequently accompanied by coinfections?
  • what we really need is a comprehensive approach that encompasses the complex inflammatory neuro & psych aspects of #LymeDisease
  • looking at PET scans to determine why some patients remain sick. Has shown that brain improves w/ repeat antibiotics. #ILADS2017
  • First time that all #LymeDisease symptoms are on record at the United Nations. Supported by Peer Reviewed Literature. You can cite this report -> https://www.lymedisease.org/violating-human-rights/ …
  • HBOT useful for encephalitis patient (low pressure—1.5-1.7 atmosphere x 8-10 sessions) works well for improving brain function.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .

Madison December Support Group Meeting

winter-14

Madison Lyme Support Group will meet Saturday, December 9, 2017 at Pinney Library from 2:30-4:30.  It’s show and tell day, so please bring what has been working for you to share with the group as well as questions, or just come listen and learn.

See you there!

November Milwaukee Support Group Meeting

SE WI Lyme Support November Speaker meeting:
11/18/17 3:30-5:00 pm
11345 N Cedarburg Rd, Mequon, WI 53092 (Mequon Public Library)

Join us for our second speaker meeting featuring Kari Uselman, holistic medicine practitioner in Oshkosh, Wisconsin. Her talk will focus on alternative treatments and therapies related to Lyme recovery. Check out her website at http://wellnessessentialsllc.com/

Hope to see everyone there. Family and friends welcome!

Anne Marie Levendusky
amlevendusky@gmail.com