Dedicated to raising awareness of ALL tick borne diseases, offering support, and providing referrals for information, research, and healthcare choices.

LYME COMMUNITY CALL TO ACTION! Jan. 26-27, 2016

On January 26 – 27, Lyme patients and their friends, families, medical providers, advocates, and supporters from coast to coast will be placing phone calls, posting Facebook posts, and Tweeting messages to their Congressional representatives. The messages, which we’ll send to you in the next few days, call upon the government for a redress of grievances, a right afforded to all of us by the First Amendment.

You are not imposing or inconveniencing your representatives. It’s part of their job to serve their constituents, which include all U.S. citizens in their state or district. It is also our duty, as concerned citizens, to speak out together and call on Congress for help.

Our call for action will be based upon the failures of the Centers for Disease Control and Prevention in the handling of public policy pertaining to Lyme disease, including, but not limited to: their preferential treatment of the Infectious Diseases Society of America, a private professional organization; their failure to provide medical providers and patients with ALL the available information pertaining to diagnosis and treatment by only endorsing the IDSA Guidelines; extensive under-reporting of the disease and misrepresenting the status of the disease; permitting a matrix of conflicts of interest and inappropriate conduct to exist in this government agency, among other concerns.

If you are on Facebook, you can track the progress of this national operation at this page: https://www.facebook.com/events/1739734586248693/

You might think that your one voice doesn’t matter — but you’d be wrong! EVERY voice helps to increase the volume. We desperately need to be heard, and we need your voice — and the voices of your friends and family on Jan. 26-27 when we launch this national initiative.

Arkansas Lyme page on Facebook was contacted by a reporter with the Arkansas Democrat Gazette looking for sources: people who believe they contracted Lyme Disease in Arkansas, even though the State Health Dept. says they don’t have Lyme. This is very important. Now is the time to share your story of “Arkansas denial” with a media source. Please follow up with this reporter!

His contact information is…………..cfranco@arkansasonline.com. Please pass it along to anyone who would be a good source.

This is a non-profit race dedicated to create awareness about Lyme disease and raise funds for the International Lyme and Associated Diseases Education Foundation (ILADS.org), a non-profit organization educating and training leaders about the disease.

This is a race dedicated to Alisa Garland Hipp and all the Lymies of Northwest Arkansas and beyond. All proceeds will go towards ILADS (International Lyme and Associated Diseases Society) who help train leaders to treat for Lyme and other tick-borne diseases.

If you are interested in sponsoring the event, contact araceagainstlyme@gmail.com.

For more information about the race, please visit:
http://www.araceagainstlyme.com/

 

Join the Mayday Project this year.  Promote hope for all who suffer from Lyme disease.

Re-posted with permission of the Mayday group.

mayday project big announcement

As promised here is the big announcement we’ve been waiting to release: We will be meeting with the IDSA President in March to discuss current guidelines.

We have presented them with evidence found in peer-reviewed articles written by the original IDSA Lyme guidelines authors containing evidence that a persistent/chronic infection exists. We are fighting with science and we’ve made some headway, we believe this could help have the restrictive IDSA guidelines reviewed.

We have adjusted the schedule to focus our energy on the IDSA. We have their attention and we need to keep it that way. The dates are still the same, the hotel is still the same, but the candlelight vigil is now occurring at the IDSA instead of at Capitol Hill.

Now we need you to show up to help us let him know just how many of us there are that are suffering! If you can’t make it, please send someone in your place. Join us as this will truly be a monumental year!

Washington, DC – WEBWIRE – Monday, November 03, 2014

The Mayday Project welcomes the fact that Dr. Paul Auwaeter, a key author of the 2006 IDSA Guidelines for Lyme disease, responded in detail to our concerns about the guidelines in a Medscape article about Mayday’s outreach to IDSA members at the IDWeek medical conference in October 2014.

Dr. Auwaeter’s statement that there can be “productive collaboration among advocacy groups” was especially encouraging.

Mayday also appreciates the open-mindedness of the doctors and researchers who spoke with us at IDWeek, and those who read our open letter to IDSA members. We gained valuable insight into the complications of battling emerging diseases, such as Lyme, and a better understanding about the dangers related to overuse of antibiotics.

However, we take issue with Auwaeter’s statement that “the recommendations in IDSA’s guidelines are safe, effective…”

Read the article in it’s entirety  here:   Webwire Article

I made it back from the Philadelphia protest in one piece. It was a great experience, as usual, meeting many new faces from across the country. NY, CT, VA, WV, WA, OR, FL, KS, NV to name a few, were all participants. We had a candlelight vigil for those who have died from Lyme the past year or so.

The IDSA was NOT accommodating toward us (not surprised). Just to make it clear, The Mayday Project is not protesting for long-term antibiotics.

What we want is for them to revise the guidelines and accept persistent Lyme disease as a diagnoses. This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure. This is what we ultimately want, not the use of long term antibiotics. While that might help some, that’s not our demand. It’s a complete revision of the Lyme disease guidelines to accept and acknowledge chronic Lyme. Their only response to us has been “long term antibiotics are dangerous” and references to an outdated John Hopkins University study that showed “Chronic Lyme disease” doesn’t exist. Same old thing they have been spouting for years.

I will add a link to the video of the protest so you can see what it is all about.
In the meantime, back to local issues. Let’s talk about the Arklatex.

Since there are many of you who feel that physically protesting is not the way to gain acceptance of Lyme in our area, let’s go for another strategy. Then maybe the protests can come later.

First, lets’s figure out a plan.

DEFINE THE PROBLEM IN THE ARKLATEX.

A). GOALS:
TO GAIN ACCEPTANCE AND RECOGNITION THAT LYME IS IN THE AREA?.
WHAT ELSE?
WHAT ELSE?.
B). OBJECTIVES: HOW WE WILL REACH THESE GOALS?
WHAT DO YOU FEEL IS THE BEST WAY TO REACH OUR GOAL/
OBSERVATIONS, INPUT?

This will be a start. Like I said last week, think about this. I need input and suggestions. Let’s lay it out how we can deal with the Arklatex first. But we need to stick with the “treatment plan”. Help us fill in the blanks! We are in this together, we want change, but it won’t happen until we get in action.

I’ll plan for a conference call in about 10 days or so. Then we’ll discuss our strategy. Thank you all for your interest and posts this last month!!!!!

Link to video of the Mayday Protest in Philly, Oct. 11.
Lyme Disease Protest – Philadelphia, PA – 10/11/14

Lyme Disease Protest – Philadelphia, PA – 10/11/14
On October 11, 2014 a protest was held to encourage the IDSA (Infectious Diseases Society of America) to change their outdated and ineffective guidelines for…
Lyme Protest

I’ll be posting to the Arkansas Lyme Facebook Page as well. Arkansas Lyme Disease
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Arkansas Lyme Disease
Arkansas Lyme Disease seeks to connect those who have contracted Lyme and tick-borne diseases and…

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