Author | LymeDisease.org

ldoadmin

Lyme Policy Wonk

Andy Schlafly of AAPS Takes on Autism Treatment–lessons for Lyme
July 9, 2009

Andy Schlafly of AAPS describes the efforts of AAPS to work with patient groups in health care reform for autism. His comments on how important it it to speak out and for patients and physicians to join together to combat over-zealous medical boards that go after physicians who treat patients is compelling. He points out that the medical board in Texas is in cohoots with insurers behind the scenes and that this has impeded legislative efforts. Take a look at his video. The parallels with Lyme are striking.

Read More Andy Schlafly of AAPS Takes on Autism Treatment–lessons for Lyme
Touched by Lyme

TOUCHED BY LYME: A beginner’s guide to all things Lyme
June 30, 2009

Almost every day, someone will post the following question on one of the many Lyme-related on-line support groups: I'm newly diagnosed (or think I might have Lyme.) How can I find out what I need to know?

Read More TOUCHED BY LYME: A beginner’s guide to all things Lyme
Lyme Policy Wonk

Talking the talk
June 30, 2009

Terrence McNally at KPFK, a local public radio station in Los Angeles interviewed me, Andy Wilson, Mandy, and Dr. Horowitz on June 23rd about the film, Under Our Skin, and about the antitrust settlement. It is a good listen if you have not heard it. The link to the podcast is below. A close friend snapped the picture of me in the booth.

Read More Talking the talk
Touched by Lyme

TOUCHED BY LYME:"Virtual theater party" for Under Our Skin–be there or be square
June 24, 2009

I don’t know about you all, but I’m terribly disappointed that I live too far away to attend any of the moviehouses showing Under Our Skin this week. After all, the theatrical release of this film is one of the biggest events to hit the Lyme world, ever. So, I’m making up for it by throwing a “virtual” theater party…and I hope you’ll join me.

Read More TOUCHED BY LYME:"Virtual theater party" for Under Our Skin–be there or be square
Touched by Lyme

TOUCHED BY LYME: Citizen promotion of "Under Our Skin"
June 18, 2009

The theatrical release of the Lyme documentary "Under Our Skin" is almost upon us. There is still time for you to help fill those theater seats! One member of an on-line support group came up with some creative ideas for getting the word out that just about anybody could do.

Read More TOUCHED BY LYME: Citizen promotion of "Under Our Skin"
Touched by Lyme

TOUCHED BY LYME: Parenting kids with Lyme–“one day at a time” and a two-track approach
June 18, 2009

Let's say your family has been through the emotional meat grinder of dealing with a child who has Lyme disease. Then, after what may be years, your child's health significantly improves. How do you return to day-to-day normalcy? How do you deal with the very real fears that symptoms may be returning? Guest blogger Sandy Berenbaum, LCSW, BCD, a Lyme-literate family therapist, discusses a game plan for this new phase of your family's life.

Read More TOUCHED BY LYME: Parenting kids with Lyme–“one day at a time” and a two-track approach
Lyme Policy Wonk

Listen up! Speak out and be heard! Help CALDA represent your views to the IDSA!
June 17, 2009

The Infectious Diseases Society of America’s new Lyme disease guidelines review panel will hold a one day hearing on July 30. This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated. Of the 18 speakers selected to testify, two are patient advocates, including me. The testimony will be aired live on the internet on July 30 so stay tuned.

STAND UP AND BE COUNTED

CALDA is conducting a survey of individual Lyme experiences to give you a chance to have input. Results of the survey will be included in my testimony to the IDSA panel.

Read More Listen up! Speak out and be heard! Help CALDA represent your views to the IDSA!
Touched by Lyme

TOUCHED BY LYME: Is having Lyme-induced MCS a criminal offense?
June 14, 2009

Some people with Lyme disease develop a host of related problems, like extreme sensitivity to light, sound, and various chemicals in the environment. (This last condition is called multiple chemical sensitivity, or MCS. For people who have it, being around gasoline fumes, cologne, and even clothes washed in certain detergents, can literally be life-threatening.) A California teenager with Lyme and the above-mentioned conditions recently found herself in a harrowing encounter with the law.

Read More TOUCHED BY LYME: Is having Lyme-induced MCS a criminal offense?
Touched by Lyme

TOUCHED BY LYME: Beauty and pain intertwined
June 10, 2009

ATTACK—A STORY OF LYME DISEASE is a most unusual group of photographs on display in the central California coastal town of Arroyo Grande. The pictures are the work of Cal Poly student photographer Brianna Nosler, who did them as her senior project. Because Brianna is majoring in Art Design, the images have almost a high fashion quality to them. Yet the story they tell is devastating, gritty, and real.

Read More TOUCHED BY LYME: Beauty and pain intertwined
Lyme Policy Wonk

Gunfight at the OK Corral– Pistols at dawn! The Sequel–Stricker & Johnson reply to President of IDSA
June 7, 2009

A couple of weeks ago, I suggested you look the “pistols at dawn” action at the OK Corral between IDSA president, Dr. Ann Gershon, and Dr. Stricker and me on the IDSA guidelines, antitrust law, and Lyme disease. Drum roll. . .The reply by Dr. Sticker and me is now posted on the Journal of Medical Ethics website. This lively debate is a breath of fresh air to the Lyme community.

Read More Gunfight at the OK Corral– Pistols at dawn! The Sequel–Stricker & Johnson reply to President of IDSA

End of content

Lyme Basics

Co-infections

Ticks

Header text

Patients

patient text

About The LymeTimes

The LymeTimes

Educating And Improving

MyLymeData

MyLymeData

Text Here

About Us

About LymeDisease.org (whole section missing- need content)

Text Here

ldoadmin

Subscribe to Our Newsletter

Navigate

Support LDO

Contact Us

Mailing Address

Lyme Basics

Co-infections

Ticks

Header text

Patients

patient text

About The LymeTimes

The LymeTimes

Educating And Improving

MyLymeData

MyLymeData

Text Here

About Us

About LymeDisease.org (whole section missing- need content)

Text Here