Archive for the ‘Activism’ Category

Public Hearing Update

After speaking with the office of Representative Sanfelippo, please note that the committee will be speaking on the Lyme Treatment issue first, right at 10:00.  Thank you to those who made phone calls on this matter.

Also, please note that the issue is about getting the Wisconsin State Medical Board to make rules on Lyme Disease treatment, and while that may seem a wise thing at first blush, please know that it is often the folks on this very board who come after LLMD’s for treating outside the horrifically inadequate CDC guidelines.  It’s a bit like asking the wolves to guard the hens.

We need to make sure that the committee understands there is a huge schism in the medical community on Lyme Disease treatment with the CDC on one side of the fence and ILADS on the other – and this fence is barbed.  Never shall the twain meet.  The CDC doesn’t believe chronic Lyme exists and feels Lyme is hard to catch and easy to treat.  ILADS believes in chronic Lyme and that it’s easy to catch and difficult to treat.

There couldn’t be more polarization on this one.  

Also, important to note:  patients rarely have just Lyme or borrelia, but are infected with multiple pathogens (Bartonella, Babesiosis, Mycoplasma, viruses, fungus, and stuff not even named yet) with multiple strains that tests do not pick up.  If you read the Babesia article, you realize they are finding new strains monthly.  https://madisonarealymesupportgroup.wordpress.com/2016/01/16/babesia-treatment/

So, in a nutshell, MSIDS (multi systemic infectious disease syndrome), rather than the limited label of Lyme Disease – is a complex illness that takes time and numerous treatments with a variety of things to be effective.

The best thing this committee can do is protect doctors who dare to treat outside the CDC guidelines

Please go to the information desk on the main floor and ask for the hearing room (415 Northwest) for the Lyme Disease issue.  They will direct you as the Capital is a bit of a labyrinth.

Hope to see you all there

 

Category:

Activism, Uncategorized

WI Public Hearing Feb 3

http://www.channel3000.com/news/Bill-would-set-standards-for-treatment-of-Lyme-disease/37560682  (Go here for informative video)

Committee on Health
PUBLIC HEARING – FEBRUARY 3RD
Wisconsin Capitol Building 2 East Main Street, Madison, WI
Begins: 10:01 AM 415 Northwest (subject to change)

Items AB658; AB659; AB660; AB708; AB709; AB710; AB711; AB712; AB713; AB736; AB752; AB765; AB766; AB768

AB768 – Rules regarding diagnosis and treatment of Lyme disease and requiring the exercise of rule- making authority.
Main Authors: Rep David Craig, Assembly District 83 (R-Big Bend) Rep.Craig@legis.wisconsin.gov (888) 534-0083
Senator Frank Lasee, Senate District 1 (R-De Pere) Sen.Lasee@legis.wisconsin.gov (608) 266-3512
Authors/Sponsors: Representatives Craig, Sargent, Ballweg, Considine, Jagler, Kahl, Kremer, T. Larson, A. Ott, Petersen, Sinicki,
Skowronski, Spreitzer, Thiesfeldt and Kooyenga; cosponsored by Senators Lasee, C. Larson, Olsen and Vinehout.

Committee Members ( Link http://docs.legis.wisconsin.gov/2015/committees/assembly/1406 )
Assembly District 15 (R – New Berlin)
Rep.Sanfelippo@legis.wisconsin.gov
(608) 266-0620 (888) 534-0015
Assembly District 55 (R – Neenah)
Rep.Rohrkaste@legis.wisconsin.gov
(608) 266-5719 (888) 534-0055
Assembly District 87 (R – Glen Flora)
Rep.Edming@legis.wisconsin.gov
(608) 266-7506 (888) 534-0087
Assembly District 82 (R – Franklin)
Rep.Skowronski@legis.wisconsin.gov
(608) 266-8590 (888) 534-0082
Assembly District 59 (R – Kewaskum)
Rep.Kremer@legis.wisconsin.gov
(608) 266-9175 (888) 534-0059
Assembly District 25 (R – Manitowoc)
Rep.Tittl@legis.wisconsin.gov
(608) 266-0315 (888) 529-0025
Assembly District 40 (R – Waupaca)
Rep.Petersen@legis.wisconsin.gov
(608) 266-3794 (888) 947-0040
Assembly District 44 (D – Janesville)
Rep.Kolste@legis.wisconsin.gov
(608) 266-7503 (888) 947-0044
Assembly District 8 (D – Milwaukee)
Rep.Zamarripa@legis.wisconsin.gov
(608) 267-7669 (888) 534-0008
Assembly District 7 (D – Milwaukee)
Rep.Riemer@legis.wisconsin.gov
(608) 266-1733 (888) 529-0007
Assembly District 78 (D – Madison)
Rep.Subeck@legis.wisconsin.gov

Category:

Activism, Uncategorized

Call to Action/Lyme Patients

On January 26 and 27, Lyme patients and patient advocates from around the United States will join together and call on Congress to take decisive action to address the out of control epidemic of Lyme disease and related tick-borne illnesses.

We are concerned about CDC’s failure to contain this epidemic, and we are concerned about conflicts of interest and violations of federal law that contribute to the preventable suffering of thousands of chronically ill patients.

We are especially concerned that CDC continues to provide preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting the 2006 IDSA guidelines for Lyme disease, which are noncompliant with federal standards, while withholding information from the public about the 2014 guidelines from ILADS, which are compliant with current standards and reflect the best available science.

Especially disturbing is that the CDC officials providing the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a serious conflict of interest.

CDC’s preferential treatment harms many thousands of chronically ill patients, who are misdiagnosed and denied medically necessary treatment due to restrictions imposed by the IDSA guidelines. Many thousands of chronically ill patients face financial hardships from out-of-pocket costs and lost income. The burden on our economy is enormous, the suffering is widespread, and much of this is preventable.

You can make a Difference

It’s easy and takes less than 10 minutes. All you need to do is make three phone calls: one call to each of your U.S. Senators, and one call to your representative in the U.S. House.

 

Senate staff have reported that telephone calls make a much stronger impression than email, because emails can easily be automated. They say getting 100 phone calls on a topic in a single day is considered “a lot”. We can do that…and much more.

To Find your Representatives and Senators, go to:  https://www.nationalpriorities.org/take-action/know-your-representative/

 

For sample scripts to read from, go to: https://www.facebook.com/events/1739734586248693

The event has pinned post with a photo of a phone. After you have made your phone calls, “like” the photo. The number of likes will provide a real time counter to monitor the response. Also, post the name of your state, so we can gauge the response in each state.

Ask your friends, family and neighbors to participate. If they are not on Facebook, email this information to them. To make it easy for neighbors, print copies of the script with the telephone numbers. Ask if they are willing to spend 10 minutes to make three phone calls that will help provide a wakeup call to Congress to act decisively to address this out of control epidemic.

Petitions

This campaign leverages three Change.org petitions, with more than 65,000 combined signatures. Please sign them to show your support.

End Preferential Treatment of the IDSA Guidelines for Lyme Disease petition to the Centers for Disease Control and Prevention  http://tinyurl.com/CDCpetition

Calling for Congressional Investigation of CDC, IDSA & ALDF petition to the U.S. House of Representatives, U.S. Senate  https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

Legalize Lyme Disease petition to President Barack Obama, U.S. House of Representatives, U.S. Senate  https://www.change.org/p/president-obama-and-congress-a-call-to-legalize-lyme-disease

 

 

 

 

 

Category:

Activism, Lyme, Uncategorized

Latest ILADS News

Dr. Samuel Shor, FACP is the new ILADS president, and the three new members on the ILADS Board of Directors are Dr. Sam Rahbar, Dr. Phillip DeMio, and Dr. Stephen Bock.

636 papers were listed on PubMed in 2015 that were either related to Lyme Disease, borreliosis, or Borrelia burgdorferi.  This is good news as medical professionals commonly use PubMed to look for research.

Upcoming opportunity:  

Dr. Brian Fallon’s group at Columbia University is about to launch a new study that includes comprehensive assessment of patients with chronic post-treatment Lyme pain as well as treatment. They’re hoping to be able to find alternative treatment for patients with persistent pain who have already had considerable antibiotic therapy. The assessment includes multiple modalities, including a functional MRI and MR Spectroscopy component. The treatment involves two medication therapies – one that impacts the neuroepinephrine pathways for chronic pain and the other which targets the glutamatergic pathways. The assessments and treatment are free of charge to the patient.

For more information go to:

http://www.columbia-lyme.org/research/cr_research.html.

 

 

Category:

Activism, Lyme, research, Uncategorized

Merry Christmas

This season I share the store of Jesse Colin Young, 60’s singer and songwriter, who has an all too familiar story to tell, one that includes depression, anxiety, cognitive issues, and panic attacks.

The good news is someone put an ILADS pamphlet into his hands.  He thought, “Good God, this sounds like my biography….maybe I have Lyme Disease?”  

The following Youtube is one of Young’s most memorable songs.   Crank it up!

For the entire interview where he discusses his journey with Lyme Disease, go to:  http://www.classicrockhereandnow.com/2014/07/jesse-colin-young-exclusive-legendary.html

You too can be instrumental in changing someone’s life.  All it takes is listening, connecting dots, and pointing people to resources and maybe handing them a pamphlet.

http://www.lymediseaseassociation.org/images/NewDirectory/Resources/LDA_Brochures/ABC_2009.pdf  – created for parents and educators

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=52&Itemid=39  To Order LDA Handouts
The Lyme Disease Association provides the following handouts:

LymeR Primer (pdf) Awareness Brochure: symptoms, tests, tick identification, diseases ticks carry, prevention, tick removal, tick testing, general facts and symptoms about Lyme and many tick-borne diseases.
Tickmarks – Bookmarks (pdf) Awareness Bookmark: pictures of ticks, diseases they carry, proper tick removal.
ABC’s of Lyme Disease (pdf) Brochure For Parents & Educators: specialized information on children in areas of ophthalmology, psychotherapy, neuropsychiatry, gastroenterology, pediatrics, rheumatology, co-infections, education.
TickCard (pdf) Business Sized Awareness Card: pictures of ticks, diseases they carry, symptoms and tick removal

Category:

Activism, Educational handouts, Lyme, Uncategorized