Tag Archive | Lyme Disease Awareness
Letters To Strangers 2016 ~ Montana Letter
This effort was discussed in my recent post about my trip to DC last week, and is described in further detail in a post from May of last year. My letter was updated this year and some of the Montana patients active with Northern Rockies Lyme Disease Coalition efforts shared their photos to help further […]
May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum
Each May, The Mayday Project hosts a rally outside of the Infectious Disease Society of America’s Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change. Patients travel from around the region […]
Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part Two)
Misinformation about Lyme disease dangerously skews public perceptions of patients, in addition to perceptions of the disease, further alienating thousands of patients from families, friends and careers, as well as appropriate healthcare.
Lyme Disease Challenge Week One Highlights and Appreciation Post (Celebrities & Media)
As you’ll read farther down, this post was written during week four of the Lyme Disease Challenge (which launched March 2015). There was so much more to cover than this that I set it aside until I had “time” to do it justice. Now, at the beginning of June 2015, even in it’s less-than-thorough-enough state, […]
DEAR CDC AND FDA ~ BY MELISSA VEHORN
Previously posted on Northern Rockies Lyme Disease Coalition. Posted with permission. This is not from the Northern Rockies, but clearly applicable to all of us. Thank you Melissa. Dear CDC and FDA, I don’t want to just go away. I want to live! I have a lot to offer this world. I am not just a […]
Styling a Lyme Bill ~ Washington Guest Post by Hannah Elise Miller Kato
What do you wear to witness the signing of a state bill by the Governor? As I picked over my closet I thought about how I arrived at this day. I thought about my long fight over the last ten plus years. I thought about it all; the sleepless nights, the progressive symptoms that waxed […]
Prologue ~ Guest Series from Washington’s Recognizing Chronic Lyme Bill Supporters
Washington’s SB 5448, Recognizing Chronic Lyme was signed Friday, April 24, by Governer Inslee. There will be more steps in the future, but the signing makes way for some of the stories from the inspiring patients that supported this bill. I love to share other people’s stories and other people’s work, and the patients advocating […]
Questions, Logic, Ticks, and Lyme Funding Links from Northern Rockies Lyme Disease Coaltion
Following are three of the first articles published on the new Northern Rockies Lyme Disease Coalition website. We are gearing up to launch May 1. The only anticipated on-line fanfare will be photographic (see requests below the article links) and real-life will include presence at the Mayday Project’s IDSA Rallies in Arlington, VA. A CALL FOR INCREASED […]
Lyme Disease Challenge Updates ~ My Kids’ On-going Challenges
We challenged all of our families and friends and then some in smaller groups. For all of the fun and surprising responses we’ve gotten in the celebrity world (which was not a part of all this we were expecting) the friends and family side has been a bit slow. Very sweet responses, but only a […]
Letters To Strangers for Arlington MayDay Rally ~ Request Via Sheila Bush Can Also Benefit NorthernRockiesLyme.org
Sheila’s request is posted below and was also shared with The 1,000 Letters Lyme Campaign and in additional Facebook groups in recent days. So take note that if you remember seeing something like this already, it was most likely this request. The intent is for the letters to be handed out at The MayDay Project’s […]
Personal Overview of the IDSA ‘Public Comment’ Period ~ Part 1
We all know how important this is. Not all patients know all the pieces or felt ready or physically or mentally able to respond directly. I’ve had firm plans to submit my own comments, as well as question suggestions (based on IDSA President Calderwood’s statements following his meeting with The MayDay Project), and to respond […]
#ChrisBitesLyme ~ Enderswordman ~ Christopher #LymeDiseaseChallenge’d Tobuscus, Kid President, and EvanTube
Christopher was almost ready for the Lyme Disease Challenge to start March 1 (www.lymediseasechallenge.org). He made two videos in advance to give instructions, but then got sick. Then I got sick. His sister got her video done, so she could challenge some friends early on. Then the challenge started and a number of Lyme […]
Link to Press Release ~ Outcome of The Mayday Project and IDSA President Calderwood’s Meeting
Just Released Lyme Patient Advocates Meet with IDSA President, Discuss Concerns About Guidelines Review Process ARLINGTON, VA, Tuesday, March 24—Representatives from The Mayday Project Lyme patient advocacy group met with Infectious Diseases Society of America (IDSA) President, Dr. Stephen Calderwood, on Friday, March 20, to discuss concerns about the IDSA’s guidelines for diagnosis and treatment […]
Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links
This overview was initially part of another post from September (with patient accounts of long-term Lyme), but there were just too many ideas there to be valuable. However, referencing that post is extremely valuable in digesting this overview, and in understanding why you should take the time to do so. Dozens of patients were willing […]
Christopher’s Videos About the Lyme Disease Challenge (ChrisBitesLyme)
I posted in early 2015 about about Christopher’s New Year’s Resolution, as emailed to me by his third grade teacher, to raise awareness for Lyme Disease through a gaming channel he plans to start on YouTube. He also, very sweetly, planned to donate 99% of his profits to Lyme Disease awareness, using the other 1% […]
Lyme Disease Challenge Starts March 1 ~ How to Get Ready
You can help “Take a Bite Out of Lyme” starting March 1, 2015, but you can do any or all of the following starting right now:
Support French Lyme Patients ~ Send Support For Proposition N° 2291
I’ve posted twice lately about state-specific proposed legislation (Massachusetts and Washington) because even letters from out of state expressing information and support for better care have been catching representatives’ attention and helping the Lyme-patient-residents of those states. There is also, it turns out, a French Proposition (draft included below) that will soon go before the French […]
Washington Proposed S.B. 5448 Would Allow Long Term Antibiotic Treatment For Lyme Disease
Proposed legislation in Washington, S.B. 5448, was read during regular session on January 21, 2015, and referred to the Senate Health Care Committee, scheduled for hearing on February 2. The bill would allow specified practioners to treat patients dianosed with Lyme Disease using long term antibiotics, “for a therapeutic purpose that eliminates infections or controls the […]
Email Massachusetts Senators (How and Why) Re H.D. 469 ~ Insurance Coverage for Lyme
“There is currently a two-week window during which representatives can decide if they want to support the proposed bill known as: H.D. 469 An Act Relative to Lyme Disease Treatment Coverage, so we need to act quickly.” The who, what and how of this issue was very well said and accounted for in a […]
Invisibly Lyme Montana 
Recap and NEW TOOLS for IDSA Comment Period ~ Still not too late (EXTENDED THROUGH APRIL 24)
UPDATE: The comment period has reportedly been extended through April 24. As a very general recap, you can respond to a Lymedisease.org survey RIGHT NOW (though April 9) to contribute to their comment, and you can still (through tomorrow, April 9) submit your own comment. I’ll list all the resources I’m aware of below. They […]