Angela D

En Route to Arlington ~ A Few Photos (& A Video) From Past Rallies

I’ve been to two Lyme rallies in the roughly two years (of my five years with Lyme disease) that I’ve been diagnosed.  Most of my in-person time with other Lyme patients has occurred within these trips.  The rest have been chance meetings on planes or while traveling, or the two times I’ve met other patients […]

Styling  a  Lyme  Bill ~ Washington Guest Post by Hannah Elise Miller Kato

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

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 […]

Northern Rockies Lyme Disease Coalition ~ Requesting Photos and Map Locations

Northern Rockies Lyme Disease Coalition ~ Requesting Photos and Map Locations

My new site and organization, at NorthernRockiesLyme.org, is up and running, although still in progress. We will continue to be seeking map locations and several types of photos, used initially to celebrate and prepare for our May 1 launch and participation in The Mayday Project’s IDSA Rallies in Arlington April 30 and May 1. Patient voices are […]

Questions, Logic, Ticks, and Lyme Funding Links from Northern Rockies Lyme Disease Coaltion

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

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 […]

IDSA Comment Period & Lymedisease.org Survey Extended to April 24

You can still comment through April 24 on IDSA’s Draft Review Plan for current Lyme disease guidelines, and you can still respond to Lymedisease.org’s related survey. LYMEPOLICYWONK: Deadline extended; you can still comment on IDSA  In March, the Infectious Diseases Society of America provided a 30-day window for the public to comment on its plan […]

Emails Requested ~ WA Lyme Bill Goes to Gov. Inslee For Signature (SB 5448)

Emails Requested ~ WA Lyme Bill Goes to Gov. Inslee For Signature (SB 5448)

Washington organizers, including Co-sponsor Dan Boeholt, have requested assistance in the form of gentle emails of support to Governor Inslee requesting that SB 5448 be singed into law.  Below are two requests that say it well, followed by a brief update and links for further background on the Bill, including follow up on last week’s exciting margin […]

Letters To Strangers for Arlington MayDay Rally ~ Request Via Sheila Bush Can Also Benefit NorthernRockiesLyme.org

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 […]

Tweeting the Surgeon General for #NPHW ~ Kudos to Patients for Great Questions

It took more energy than I had to submit what I could for IDSA’s comment period on it’s final day.  It was not an easy process, and I am still exhausted and recovering. So many things happened yesterday that the events will likely spill into multiple posts and will be things we remember for a […]

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 […]

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

#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 and Notes ~ Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey

The Comment Period ends April 9.  Just published ~ a survey opportunity via Lymedisease.org in order to submit comments to IDSA’s Lyme Guideline Review Project Plan Public Comment Period (ending April 9).  You can see my other posts and links on this topic listed here.  MayDay Project press release here (regarding comment period and meeting with IDSA […]

IDSA Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated)

IDSA Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated)

The process of getting started feels a bit overwhelming.  In theory, we do need to include hard science, as well-organized as possible.  In reality, we are sick, tired, and behind compared to what we thought we’d have time to get together so far. *UPDATE* Lymedisease.org released a survey (3/27) yesterday that allows patients to be […]

IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)

Foreward ~ I’m so behind on my own comments, and the deadline for the IDSA Public Comment period is so fast approaching, that multiple posts with relevant or even related content or links are going to published in a rough state, including things like un-formatted and un-annotated lists of links, just to get the information out […]

Link to Press Release ~ Outcome of The Mayday Project and IDSA President Calderwood’s Meeting

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 […]

New Montana Lyme Study “Hits Home” Emotionally and (Almost) Geographically

New Montana Lyme Study “Hits Home” Emotionally and (Almost) Geographically

I heard from another Lyme patient about a week that there would be a Lyme disease study starting in Ravalli County with pediatrician Blaise Favara, and last night it was on the news. When I first heard about it, he study part was quite exciting, although they are not looking at my area.  What made […]

Reminder/Request ~ Email WA Health Care Committee (Supporting Chronic Lyme Bill SB 5448)

Reminder/Request ~ Email WA Health Care Committee (Supporting Chronic Lyme Bill SB 5448)

If you have not already done so please take a few minutes to write the Health Care Committee asking for their support on this very important Bill (Recognizing Chronic Lyme Disease).  I was raised in Washington, have a large number of friends and family in Washington, and travel to Washington for treatment of Chronic Lyme […]

Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links

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 […]