Archive for the ‘Activism’ Category

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

Thanksgiving

Lyme gratitude list, 2015 from Lymedisease.org

Along with new and continuing challenges for the Lyme community, there is also much to be grateful for this Thanksgiving season.

Celebrities shine spotlight on Lyme
Singer Avril Lavigne’s birthday challenge raised more than $60,000 to help pay Lyme treatment costs for children. TV star Yolanda Foster publicizes Lyme through social media and the international press. UK billionaire John Caudwell–whose whole family has Lyme disease–garners major Lyme coverage in the British press.

ILADS treatment guidelines on NGC
The new ILADS treatment guidelines have been posted by the US Government’s National Guidelines Clearinghouse. This is an important step for Lyme patients.
A shift on the scientific front?
The national scientific conversation is starting to include Lyme disease in a way not done before. Examples include Stanford’s MedX conference, the White House forum on citizen science, and last week’s session sponsored by the American Association for the Advancement of Science, which brought together leaders from the Lyme disease research, treatment and advocacy communities.
Real Lives, Real Stories
More than 9000 Lyme patients took our IDSA survey last March. We submitted the results during the IDSA’s public comment period, along with input from 87 Lyme advocacy groups. Click here to read our “Real Live, Real Stories” report.
MyLymeData

More than 1000 people registered during the first week after we launched MyLymeData, a patient-centered research project aimed at using “Big Data” technology to find a cure for Lyme disease. Click here to learn how you can join them.

We’re grateful to you, members and friends of LymeDisease.org. With your support, we continue our efforts to empower Lyme patients through advocacy, education and research.

LymeDisease.org, publisher of The Lyme Times, is the Lyme community’s leading source of news, information, and health policy analysis.
Become a member today.

Category:

Activism, Lyme, Uncategorized

Lyme Research Project

https://www.lymedisease.org/ldo-launches-mylymedata/

Please consider taking part in the mylymedata project – a large-scale study of chronic Lyme Disease, as it’s been over 15 years since the NIH has funded a treatment trial for chronic Lyme.

The MyLymeData registry allows patients to pool their health information through a secure website. “Big data” projects use advanced technology to gather and analyze huge amounts of patient data, which can assist researchers in studying disease patterns and answering important questions such as Why do some people recover from Lyme disease, while others remain ill?

“Patients have more at stake in the diagnosis and treatment of Lyme disease than anyone else involved in their healthcare,” says Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org. “Analyzing large amounts of data can provide insight into how the disease progresses and how effective certain treatments are.”

Big data projects look at the actual care ordinary patients are prescribed by their treating physicians. “This is real-world research. We need to find out what treatments are the most effective in actual clinical practice and what factors affect treatment response,” says Dr. Raphael Stricker, a Lyme disease specialist in San Francisco.

In addition to analyzing disease patterns, MyLymeData hopes to attract researchers interested in launching clinical trials. Patient privacy is critical. To ensure data is protected and secure, LymeDisease.org has partnered with PatientCrossroads, the leading provider of patient registries for the National Institutes of Health.

https://www.youtube.com/embed/FtUVvrJilx8“>http://

Category:

Activism, Lyme, research, Uncategorized

Response to the Proposed Monoclonal Antibody Injection to Prevent Lyme Disease

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/13944776?tk=-q6Qjp9U5xBsfKfijcGzoHsOghM6B0xXtori7lxgItI&utm_source=petition_update&utm_medium=email

Carl Tuttle, a Lyme activist from New Hampshire, has written a letter to Dr. Klempner regarding the safety of the monoclonal antibody injection proposed to prevent Lyme Disease.

  1. There is no safety window to protect against infection. According to Dr. Burgdorfer who stated in 1999 that about 5-10% of ticks that are carrying Lyme have a systemic infection and have the disease already in their salivary glands and can transmit infection immediately.
  2.  There is no protection from blood transmission due to blood transfusion.
  3. It can not protect against transmission by feces, urine, or tick-excretes.
  4. It will not protect sexual transmission.
  5. It will not protect from congenital transmission. 28 Peer-Reviewed Studies http://home.comcast.net/~runagain/Congenital%20Transmission%20of%20Lyme.doc

Category:

Activism, Lyme, research, Uncategorized, vaccines

Dearest Madison Area Lyme Support Group Members and Community,

Untitled-1UPDATE;  A support group attendee has volunteered to take on the support group.  I am very thankful that someone is willing to pick up the torch.  There will be a time of transition, so please continue to be patient.  I’m confident that the meetings will continue to be a great way for people to receive support from others.  Keep checking back to the website for future meeting dates.

 

It has been 5 years since I started treatment for Lyme Disease and co-infections.  I started this group shortly after I started that journey because there wasn’t a local area support group and I was searching for support from other people who were battling this complex and frustrating illness.  It was hard to start when I was so sick and struggling so much. I took on the task to help myself and others but at this time I have decided to step down as the Madison Area Lyme Support Group leader.

Tomorrow, Sept. 6th will be the last support group meeting that I host. 
Saturday September 6th (2014) from 2pm to 4pm, Madison Pinney Branch Library, 204 Cottage Grove Road, Madison, WI 53716
 

I have met so many wonderful people through this support group. As new people continue to get infected people will always search out help and support online and face to face.  Even though I do not want anyone to fall through the cracks I have decided that I need to create space in my life for other endeavors.  It is hard for me to let go of something that I know helps people so much but, I am hoping that someone else in the Lyme community will step up and lead the group just like I did 5 years ago.  I’m willing to hand over informational brochures and materials, and give advice to anyone looking to pick this responsibility up. Basically they would be the contact for the website (which I might be able to just transfer) and the person that schedules and reserves the meetings at the libraries. You are supposed to be present at the meetings but if you had someone helping you then if you are too sick they could fill in or you just cancel the meeting and post that on the website and anywhere else you posted the meeting information.  I use to do that in the early days of treatment.

For now, I’d like to direct everyone searching for help to the many online resources and support groups listed below.

I will keep the website up for now so that people can find these groups but eventually the site may disappear when someone chooses to start their own group with another website. I will be taking the contact option down, so it’s important to use the groups below to seek help.

 

Wisconsin Lyme Network

Wisconsin Lyme Network is a statewide non-profit.  It’s a great resource that lists support groups around the state, both online and face to face.  Click on this hyper link to go to their website: www.wisconsinlyme.net. Or you can contact them directly using this email address to ask questions (including doctor recommendations).  wisconsinlymenetwork@gmail.com

 

 

Wisconsin Lyme Yahoo Support Group

Contact: Mike Nickel miken@tds.net

Group URL: http://health.groups.yahoo.com/group/Wisconsin-Lymesupport/

Please e-mail to miken@tds.net to receive information on monthly support meetings throughout the state and other help.

 

 

Wisconsin/Illinois Lyme Facebook Group

This Facebook group is a great way to connect to others who are suffering from Lyme Disease and other tick borne diseases.  Here’s the link to the group.  https://www.facebook.com/groups/wisconsinillinoislyme/

Category:

Activism, Lyme, Meetings, Uncategorized