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

IMG_6316 (2)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 face to face at home so far.

The first was IDWeek in San Francisco in 2013, because I just happened to be furloughed with the ability to fly for free (and was well enough).  The second was Philadelphia last October during IDWeek, because I was able to fly free then as well (through my husband’s summer job) and was mostly well enough.  I am currently flying over eastern Montana on my way to the Mayday Projects IDSA Headquarters rallies in Arlington, VA.  We got our flight benefits miraculously early this year and a friend lives miraculously close to the events.  So, although I’m not well enough, it’s an important year and I seem to be meant to go.

The number of people I know in the Lyme community has increased exponentially since October, and I didn’t know anyone at all in San Francisco.  I recognized some of the more well known organizers and attendees, but not all of them.

In fact, I took photos of Andy Abramson, not because I knew who he was, but because he was speaking with Loraine Johnson and the energy in their conversation caught my attention, even from far away.

I knew who Jordan Fisher Smith was.  His story gave me hope as I slowly accepted that I needed to look harder into the whole Lyme disease business and further testing.

It’s interesting to go back to the photos now from both events, with a very different level of knowledge of the community and the people.  In the case of Philadelphia, I knew very few of the people I photographed, so it is very interesting how well I know some of them now.

The first group of photos is a small collection of the photos that now make me laugh or take pause, having ‘met’ the subjects or become more familiar with them much later (or a starter group of them, pending more time to find the rest as I travel).  The second set are just a small collection of photos from past rallies.  Between the two is a video from Philadelphia.

*As a very divergent side note, I’m having an opposite-of-usual invisible illness moment.  The flight attendant knows I left my Dramamine plane side.  She’s been supplying me with ample ginger ale and checking to see if I feel OK.  It’s an interesting feeling to be treated like I’m sick by someone I don’t know.  Especially with them not knowing at all how sick I am.  Though without makeup, and having a new round of sudden weight loss, I may look it today.

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

Photo from Hannah Elise Miller Kato

Photo from 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  and  wained,  the  pain,  the  tears,  the  heart failure, the  surgeries,  my  poor  boys.  I  thought  about  the  positive  impact  Washington  State  Lyme  Disease  Bill  5448 could  have;  where  this  will  hopefully  all  lead  in  the  future:  awareness,  studies,  physician  education,  treatment for all,  insurance  coverage,  and  ultimately  a  cure. After  much  deliberation…(types  of  appropriate  vs  inappropriate dress),  grandmothers  brooch… Continue Reading »

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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.

544930_777022389033091_1727840475805944493_nI love to share other people’s stories and other people’s work, and the patients advocating this bill will be a special treat to hear from.

By the time I listened to the testimonies given at one of the hearings, I was hopeful about the outcome of the bill for my own purposes as a patient, but I also gained hope and inspiration from the patients that were so invested and dedicated to it’s success.

There were many involved at many levels, but I am leaving out the names here because that will come through other posts over time, from or about them, in as many of their own words as possible.  A few are mentioned in previous posts about the bill, however, and you can read the story of the bill’s Co-author, Dan Boeholt via this link, and hopefully more here in the future.

Continue Reading »

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Northern Rockies Lyme Disease Coalition ~ Requesting Photos and Map Locations

icon nrldcMy 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 extremely isolated from one another in most parts of this region (roughly defined so far as MT, WY, ID, ND, SD, Alberta, BC, Saskatchewan).  Patients’ voices are more likely to effect change through organized efforts and collaboration, so the aim here is to help close some of the geographic and figurative networking gaps (in ways Continue Reading »

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

icon nrldcFollowing 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 RESEARCH FUNDING ~ GUEST POST BY ELAINE HALLISEY

Following are just two of several well-stated statements and questions central to our challenges in Montana and the Northern Rockies:

  • Major research gaps exist regarding geographic distribution, diagnosis, and treatment.
  • What is the true geographic range of Lyme disease? Tick studies, the wide distribution of canine Lyme cases, along with other data raise questions.5,6 Incorrect assumptions lead to missed or delayed diagnosis.

ESTIMATING DISTRIBUTION, ABUNDANCE, AND MEDICAL-CARE-MIGRATION PATTERNS OF NORTHERN ROCKIES LYME DISEASE PATIENTS?

Not really.  At least, not just yet.

But we are building a preliminary map, for which we currently need your assistance.  If you have lived with or may have contracted Lyme disease in the Northern Rockies (MT, WY, ID, ND, SD, BC, ALBERTA, SASKATCHEWAN) please share the location here. (You can find other ways to help us in the short term, including awareness opportunities here and via other groups, by watching for related pages and requests, including our first request linked here.)

TICK DISTRIBUTIONS EXAMPLE ~ ASKING THE RIGHT QUESTIONS

To answer the questions that matter most, we need to identify them and we need to frame them properly. Many of the most critical questions in regards to Lyme disease diagnosis and treatment in our region are not being asked (at least not when, where, or by whom they need to be), are not well framed, are based on poor assumptions, or are all of the above.

Read more about the Northern Rockies Lyme Disease Coalition ~ here ~ or visit the website, facebook page, or event page (for our photo, map, and May 1 launch outreaches and requests).

Learn more about Sharing photos (anyone, anywhere) or map locations (MT, WY, ID, ND, SD, Alberta, BC, Saskatchewan) via the photo-links below.

PicMonkey Collage all together with url 10465514_Carol text

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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 few.  Making each all the more special.

I’ll write more about the celebrity responses and twitter and facebook responses that have blown us away and just been all around neat.  But in the mean time, here are the ones that my kids still have outstanding to celebrities, plus their originals, newest to oldest.

Christopher was excited from before the beginning to challenge Evantube, Tobuscus, and Kid President. Read more here.

Katie’s challenge included groups of friends, one of which did it with her shortly after her video.  They challenged Taylor Swift, The Today Show, multiple teachers and friends, and Fallout Boy.

Christopher did an instructional video and an outtake early on as well.

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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 to revise the Lyme disease guidelines. The deadline was April 9. However, the IDSA has just extended the time to file comments. If you have not yet done so, you now have until April 24th.

Article includes links to survey, past post on how to comment, and examples, as well as highlights from and a link to their Comments with LDA for 67 patient groups.

You can also refer to The MayDay Project‘s document-version of their comments as examples, too (which I also found very useful).

The most recent tools I was using by the end of the initial comment period are included in a Recap post here.

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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 on the Bill’s final vote.  As always, up to date information can be found on the Ticked Off On Lyme WA Facebook page.

From Faith Rameriz ~

Okay folks, it’s time to write Governor Jay Inslee asking for his support on Washington’s Lyme Bill! Gentle, short emails of support for signing Lyme Bill SSB 5448 have been recommended.

1) Click the link below:
https://fortress.wa.gov/es/governor/

2) Enter your information.

3) *What is the subject of you message? Choose: Health Care.

4) Enter and submit your comments.

Thank you for your participation! Don’t forget to share with friends and family!

From Kristine Moden ~

One final email to go for WA Lyme Bill SSB 5448!

It’s time to send our final email to get WA Lyme Bill SSB 5448 passed into law. It was recommended by our team leader, Dan Boeholt, who co-authored the bill, that our email’s to Governor Inslee be gentle and short, and only one or two sentences long. Here is the link to send Governor Inslee an e-message. https://fortress.wa.gov/es/governor/

WA state residents as well as non-residents are welcome to send a message.

Below is an example of a short e-message that NEEDS editing. You may make it as personal as you like but keeping it as short and as courteous as possible is most important.

Dear Governor Inslee,
I/a loved one/a friend has/have been struggling with chronic Lyme disease and has/have been very sick for many years now, I would greatly appreciate your support in signing Lyme Bill SSB 5448.

Thank you,

Thank you everyone for your support and participation these past several months. We are almost there!

Update ~

Last week Washington organizers for SB 5448 issued a call to action to email 98 House Legislators.  I based mine on my past email, which still applied to that request and what the group was asking for (posted here).  I received responses from multiple Legislators, whom I will probably list here or in a future post, as I think responses are extremely important (and I was happy to receive them).

The bill went to a vote April 10 and passed 85 -12.

Background ~

*This post summarizes the bill with links for background and it’s history (up to House Hearing).

Additional Posts/Articles (Recent First)

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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 Protest/Rally in Arlington (more info here and on their website) in order to illustrate the points and questions described in Sheila’s post, included below.

Take a look at the recent request for Shoes for the protest as well (also see end of post) and information about the event (and why you should attend) and also watch for updates.

Local/Regional Need for Letters (TWO FOR ONE!) ~ Northern Rockies

An added benefit is that if you live in or were bitten in the Northern Rocky Mountains (broadly including MONTANA, WYOMING, IDAHO, NORTH DAKOTA, SOUTH DAKOTA, CANADA) your letter would be very valuable for the Stories section of Northern Rockies Lyme Disease Coalition’s new website (that I am still constructing).

We are very new (Facebook page here), and plan to launch May.  But you can preview the site and get ready to help us share our first announcements startomg Wednesday, April 15.

If you are not part of this region, we still want and need your help, so please stay tuned!

In-Region Letters (Contracted Lyme Here and/or Living With Lyme Here)

If you are willing to share your letter for the site, you can email it to northernrockieslyme@gmail.com and I have arranged to bring them to Sheila at the rally. You can also send them via facebook message (Invisibly Lyme Montana Page or brand new Northern Rockies Lyme Disease Coalition Page), or even as a comment here or on NorthernRockiesLyme.org.

If you would like to share your letter after the fact, we are happy to receive them, but to have them printed for the rally through me, they will need to be recieved on or before April 27 and to follow the request from Sheila below.

Sheila’s Request

Everybody, we need as many of you as possible to *write a letter to a stranger walking down the street* for the Mayday Rally. If you had the opportunity to tell a complete stranger what Lyme disease has done to your life, what would you say? This is your chance to help educate the public about Lyme disease.

We’re going to be putting our letters into sealed envelopes and then having passersby at the Mayday Rally reach into a bin and pull one out! This is a more intimate way of communicating what you’ve endured. Please include only your first name, your city, state and age and then share as much as you can about your Lyme disease journey. I personally will be including my Lyme journey poster with my letter.

Some questions you could answer in your letter:

*How long have you been sick?
*What were/are your symptoms?
*How long did it take to get a proper diagnosis?
*How many doctors did you have to see to get that diagnosis?
*What were your misdiagnoses?
*Is treatment helping you?
*Is it covered by insurance?
*What has Lyme disease cost you (hobbies, dreams, career, etc.)?

Feel free to paint your recipient a picture of what your life was like BEFORE Lyme and what it’s like AFTER. Please PM your letters to me (send me a friend request first so it does’t go in my “other folder”). I wish I’d had this idea two months ago, but I didn’t so we have to act quickly if we hope to get a lot of letters to the rally. ALL OF YOU ARE WELCOME TO WRITE, WHETHER YOU’LL BE ATTENDING MAYDAY OR NOT. If you write a letter but aren’t planning on going to the rally, feel free to tell your recipient that you’re not there because you’re too sick or because you’re too broke (or whatever the reason is).

Thanks!

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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 long time to come.

As for the surgeon general, there was invitation to tweet questions by 2:30 ET yesterday with the hashtags #AskTheSurgeonGeneral and #NPHW.

In spite of the many, many excited and/or pressing things happening in the Lyme community yesterday (not the least of which being a Lyme Disease Challenge, Lyme disease, and Avril Lavine segment on the Dr. Oz show, an impressive number of Lyme patients and advocates took the time to ask good questions and support each others efforts.

Initial questions from us and others got a little buried and tended not to use the hashtags.  But there were some good questions in advance all the same.

Preliminary Questions ~ Link

MORE FROM THAT THREAD HERE

I thought it was worth sharing a few of the tweets here, and very worth sharing some of the photos and graphics.  I may add on as time permits, especially if I figure out the best way to display them.

MORE FROM THAT THREAD HERE

Search #AskTheSurgeonGeneral on Twitter To See More

Disappointing Tweet From a Public Servant Identfifying His Affiliation

As a former Wildland Firefighter, former EMT, and as the spouse of a professional Firefighter/Paramedic, I’m pretty disappointed in this guy.  And hurt, to be honest.  Not becoming on a national forum, as a med student or an emergency worker.

O

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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 are all listed in previous posts, other than the new resources, listed first, that might make it still possible to submit your own comments, even if you thought you were out of time.

These new tools (or a new look at existing tools) from Lymedisease.org and The Mayday Project are enough to get you over the hump if (like me) you are still hoping to or working on your individual comments.  Technically, at the moment, I’m posting this instead, but these are going to make the difference in getting me there, so this is a worthy distraction if even one person sees it that didn’t know these were out (I missed some of them initially) or has lost track of what is available where.

As of today, in order to comment efficiently and quickly, or at least respond to the survey, I would consider these the top five links/steps (all identified/denoted (with a note in red) in their respective lists):

  1. Survey from Lymedisease.org (fastest option, allows you to contribute via their comment)
  2. New comment examples from Mayday Project (to save time and allow you to still comment individually, and/or to use in your individual comment)
  3. Existing comment examples from Lymedisease.org (to save time and allow you to still comment individually)
  4. Mayday Press Release (additional items to consider when commenting from meeting w/ IDSA President)
  5. IDSA’s announcement/comment form (to use when fully ready to submit comments)

New Tools

The MayDay Project

The Mayday Project encourages everyone to fill out the IDSA patient response form. We’ve complied a document, filled with scientific evidence of persistent infection, to help those who may be struggling with the form. Feel free to use any/all information provided! Let your voice be heard! (per their related fb post)

Lymedisease.org

Recap Lists

IDSA (Comment Period)

My Posts

MayDay Project

Lymedisease.org

Literature/Citations/Resources/Other

Reminders and Quick Thoughts: Additional Questions and Review Process

*Don’t forget, no matter what tools you use or don’t use: Based on IDSA President Calderwood’s statement after his meeting with The Mayday Project last month, they will consider suggestions for addition (better) questions for the review panel to ask.  ADD THOSE, TOO.  AND remind them to add at least one Lyme patient to the panel, as well as physicians that treat Lyme and Chronic Lyme patients.  (Their is little value to any review without at least that degree of objectivity, in my opinion, but of course you can voice that if or how you wish).

*I also find the lack of accessibility of this process inhibiting to patients and problematic in terms of transparency and collaboration, but that is likely beyond the scope of most people’s comments.  I’ll be writing my representatives on at least this aspect of the process (yesterday’s post speaks more to this, as will part 2 of that post, most likely).

DON’T FORGET TO: Comment, eat, and rest today….

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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 to Lymedisease.org’s survey (with results to be included in their comments).

To catch up on the process and associated resources, my past posts HERE include links to all related materials I’m aware of and will be mentioning here, as well as additional background information.  I may post a recap later today.

I still intend to do all three (comment, compile questions, and fill out LDO’s survey—and perhaps also write to political representatives), but I had a much grander view of the scale of my comments.  Though none of us can get to all of this.

Comments and Timing

With the best of intentions and commendable dedication, some patients commented right away, without knowing fully what to comment on or how to structure responses.  Some waited for further information and became increasingly overwhelmed, and or caught up in other Lyme community needs this month. As eluded to earlier, the IDSA’s President made further statements after his March 20 meeting with Mayday Project—anyone commenting prior to then did not have the opportunity to add questions suggestions (read more here and here).

Survey and Bigger Picture

Some patients responded to Lymedisease.org’s survey request.  This is fantastic, as the more responses they receive the more validity each comment has, both in terms of support, but also statistically (making some of the answers better able to be inferred from).

However, based on my desire for everyone to have at least an awareness of the bigger picture, it was best if they saw the survey in one of it’s original articles, in the context of the related series of instructional articles regarding how to comment (whether or not they were able to comment individually). Many patients saw it as a link alone or in it’s short post version and quickly answered.

This is still a good thing overall, but these folks may not have entirely understood that they could also submit their own comments and may not have been aware of the significance of the comment period or the Mayday Project meeting.

My Intended Approach

I’m a biologist, and a federal writer editor.  It may not be apparent in some of my posts (I have Lyme, which is why I am once again on a very extended sabbatical to recover).  I intended to approach this systematically, and found it conceivable that I could comment on the whole thing.  I have spent a great deal of time fighting for IDSA to revise the guidelines, and we may not have another chance or another chance in coming years, like this to get our comments ‘on record’.

Framework and Expectations ~ ‘Public’ Process

The gravity of it and the structure of it, though, were so overwhelming that it was hard to even begin.  I have spent years working within public planning processes, which include a very specific framework.  So it is not due to a lack of intelligence or commitment that I find this overwhelming.

Our frameworks within agencies are more complicated in terms of their actual function, with processes and collaborative expectations very firmly required and complicated.  But based on what a public comment period means, the availability of the process to the public is much, much different.

This process is not similarly accessible or clear.  Additionally, for someone like me, coming from collaborative processes, clear planning frameworks, transparency, pulbic policy, and hard sciences, it is extremely disconcerting that there are no regulatory ‘teeth’ holding this organization accountable for it’s process or outcome.  There are medical guideline creation standards, but as far as I can find, these essentially hold the weight of a general best practices expectation without ramifications or accountability.

Inaccessibility and Time Constraints

In addition to the inaccessibility or the process, feeling overwhelmed, and this being an extremely busy month in the Lyme community, there were a large number of good questions from people similarly overwhelmed but even more cognitively impaired.  People needed help, even just keeping track of the links from IDSA and from advocacy groups, putting it in context and remembering the pieces.  I spent more time sharing and explaining than compiling my own documents, yet still managed to forget who ore where I offered my assistance to in the first days the comment period was announced.

That distribution of time was in many ways acceptable. Sharing those resources as they became available was important and multiple efforts I helped with were monumental and equally important.  As is the Lyme challenge, and even more so were the legislative efforts going on in other states.

Emotions….anger, hope, frustration…

I’ve tried to stay hopeful enough to remain fully motivated to complete my comments. This has been difficult, given the way the IDSA has conducted their reviews in the past, and the guidelines they wrote and continue to support.  Not to mention the degree of personal (physical, emotional, economic, career) damage the guidelines have done to me personally.  Let alone millions of other patients.

I’m putting this in writing for a number of reasons.  One of which is to turn these frustrations into an action plan of sorts, to make the best use of the remaining days of the comment period (which ends April 9, three days from now).

To Address Today, Moving Forward

I’m flushing out the following questions and concerns as I work on my comments today.

Why is the process structured this way?  How is it best addressed?

What parts of the guidelines MOST limited my diagnosis and care?  What other things were limiting that the guidelines failed to address or indirectly influenced?

What are the most important things to focus on, personally?

Tentatively: Geography, Ecology, and Process

If I write to political representatives, what do I want them to know?

  • Science is incomplete
  • Guidelines are inadequate
  • Geographical assumptions are wrong and
    • costing our region millions of dollars
    • limiting diagnosis and care
    • keeping doctors from becoming educated
    • costing federal dollars to patients in processes such as disability and worker’s comp
    • causing unnecessary disability
  • ‘public comment period’ implies planning structure that isn’t present
  • history of IDSA & guidelines
  • role of CDC—confusing, misleading process

What to I want them to do?

  • Watch this issues
  • Offer insight into process
  • Ask questions about the process
  • Ask questions about the science
  • Look at steps being taken by other states, consider why they are necessary

Who to write to?

State reps & senators, Governor….

Heads of agencies?  What should they be asking?

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#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 Bills got rolling in multiple states and IDSA opened a comment period, so I was exhausted and sick and it took us forever to do our challenge together (but we finally, recently did).

Back in January, Christopher’s teacher emailed me his New Year’s resolution to start a  Youtube channel, partly for raising Lyme awareness (and funding for Lyme disease).  It’s going to be a gaming channel (but he only has a tablet, which is currently not entirely working, so that is going to be a challenge….but he knows a lot about games, largely from watching two of the three channels he has challenged).

Tobuscus

He and his sister have been quoting Toby aka Tobuscus for quite some time.  They have wanted to make movies together, largely inspired by Tobuscus.  I’ve watched some of his videos, and his musical parodies are hilarious.

EvanTube

I’d be embarrassed if anyone could track the number of hours my son has spent watching EvanTube.  But I can let him watch game videos there and know they are safe.  Evan is also nine and in the third grade.

Kid President/Soul Pancake

I saw a video once that he did about moms, and I couldn’t stop giggling.  So I knew of him already when my kids started talking about him.  Christopher’s class watches Soul Pancake every Thursday in class.

I’ll add links to their stuff at some point, but not right now, as it’s Spring Break and we are all in one place at the same time!!!!

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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 President).

*It is recommended, per comment response (see below) that people take this survey first, and also comment if you are up to it (both are important).

LYMEPOLICYWONK: IDSA Guidelines Survey

“Raise your voice with ours–and let’s be heard as a community! The IDSA guideline revision process is very important to patients. The guidelines panel is required to consider outcomes that are important to Lyme patients. But it has excluded them. This survey is your opportunity to tell the panel what outcomes are important to you.” – See more at: http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-idsa-guidelines-survey.html#comment-12286

I love the surveys they prepare and the way they present their results (their methodology paired with consistently large sample size).

Accessibility is a major concern of mine, and though I’m not sure how to back it up in my comments, I really believe a comment period like this should be structured more like a government-agency planning  processes (did I really just say that….I guess I did).  By this I mean the idea of public scoping when a project is being developed (in this case before the panel and questions were set), or at least public notice earlier. This would have provided forewarning of the project and (a first round of) input at a more reasonable phase of project development.   Additionally, written comments should always be accepted, in my opinion.  I feel the structure of the submission form alone was limiting to patients in many ways.

*My biggest question regarding this survey is whether it [was] whether it is intended to replace a person’s individual comment, posted in comments as follows (when you read the article, perhaps there may be an answer there):

I believe this will help many patients intimidated by the process.  Accessibility is one of my biggest concerns with the comment period, given how it is structured.  Is participation in this survey intended to replace individual comments, or welcome/appropriate if intended to be additional to them?  I’m also wondering about the option to add question suggestions via the survey (subject to the answer to the question above).  As a biologist, the rigour of your surveys always does my heart good!

Response from admin 3/28/15:

Angela, we recommend that people take the survey first. It should take no more than 10 minutes. Then, if you’re up for it, give comments on the IDSA website. Both are important.

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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 heard as a community.  Scroll down for more on that opportunity (also now incorporated into instructions, see additional update below).  You can take that survey (to be compiled and presented to IDSA and others) in addition to submitting your own comment by April 9 via IDSA’s public comment process.

This post is an attempt to map out the beginning steps, or at least give a simple list of where to go first (based on what I know so far).  You may not even have time to go to all of these links, but at least it will give you an idea of what is where so far.  Some of the information within these sources might be nice to have compiled somewhere, and if I find that they are, I’ll definitely add a link (SEE UPDATE BELOW).  But until then, these are my thoughts on how and where to start (with hopefully more clarity in future posts, as I get farther into my process or as knowledgeable groups post even more resources, as I am sure they will).

*ANOTHER UPDATE* I’ve noted here and elsewhere that I’d be watching for key groups to post instructions, examples, guidance, and here is the sort of thing I’ve been hoping for.  Sighing a breath of relief.

Feel free to read my steps below if it may help you.  But the following multi-part blog article from Lymedisease.org was released last night and I am guessing will be more clear, or could be better for your own way of approaching this.  Or perhaps both with help. (The example of how to format comments is fairly similar to what I’ve started in my notes so far).

New Guidance from Lymedisease.org (still peruse the other links in other posts here, as many are valuable, and the press release from MayDay Project is an example of something you shouldn’t miss).

My Thoughts/Steps -Updated with New Links

1.  Read the Announcement, Download or print the Document, *do not go to the comment form (see below)

Start Here:  Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan

As described elsewhere (often), the comment form linked to in the announcement is where you will submit your comments (later).  It is a survey style submission form and you have to start and finish it one sitting (so have your comments ready to paste in later).  The form includes a list of questions which are provided in the plan document (which you are downloading or printing).  You will need the plan to read and reference, but you will also need the line numbers, if you are able to comment using the recommended format (which you’ll see a bit later in resources below).

KEY POINTS: Comment period is open through April 9, prepare your comments in advance (using the list of questions in the plan document, in addition to other resources and advice provided below), enter them into the survey-style submission form only when you are completely ready.

2. Listen to the Webinar, Look through the slides, and get a basic feel for what kind of comments will have the biggest impact

There may be other links listed later on the MayDay Project website or the webinar’s event page (where the links below are also posted).  These are also the same links in my preliminary notes post, so if you’ve already saved, listened, looked, you can skip this step. I would strongly recommend the webinar, to get some perspectives on effective comments and recommended comment format, but also for a general grounding on the issues and the process.  It just helps to get yourself ready, if nothing else, and into the right mindset.  But additionally, there’s valuable information. The recording and slides links are those noted in the webinar and were provided the following day.

There were a few other resources mentioned that may be still to come (or that I may not have found yet).  But at the time, the meeting with IDSA’s president was a week away, so that was quite pressing (and the outcome was quite important).

WEBINAR RECORDING: http://goo.gl/OdpSLz

WEBINAR SLIDES:  http://goo.gl/OIwHHQ

3.  Read the press release regarding the MayDay Project’s meeting with IDSA President Calderwood for some key points to know for your comments

Dr. Calderwood agreed to consider a Lyme patient on the panel and said he would consider suggestions for questions for the panel to ask.  These could both be huge.

How they change your comments: Add questions you think should be asked by the panel (ones that better reflect patient concerns compared to the ones in the document/comment form).  Still ask for a patient on the panel, to ensure it happens, and also include other parties you think should be represented, ESPECIALLY doctors that treat Chronic Lyme patients, as well as psychiatrists (good thoughts and statements on this in recent Lymedisease.org articles on the comment period).

I think it is useful to also read the MayDay Project facebook posts that came before the press release.  It’s not critical, but it’s nice to see the evolution and there is more to the statements that is worth reading.

PRESS RELEASE: http://www.webwire.com/ViewPressRel.asp?aId=196644

4.  Decide What level of detail you can provide

A.  Strongly consider Lymedisease.org’s survey to contribute to a community-voiced comment

Update: They promptly answered the question you may have seen here yesterday and in the post about their survey. People are encouraged to fulfill the survey (asap) and also submit their own comment, as ‘both are important’. http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-idsa-guidelines-survey.html (Opportunity to answer lymedisease.org survey to comment as a community….the opportunity to suggest additional questions is important, too, so I am eager to see if that is reflected in the survey, though I know this and other authors there will have excellent suggestions they will present).

B. Take another look at examples and guidance as they become available (webinar slides linked above, new Lymedisease.org links) for the comment format and decide what level of detail you can provide

Consider the optimal format and level of detail in the slides, or other examples as they become available, and set reasonable goals so you can either provide very detailed comments with citations on certain topics, or adjust accordingly in order to cover the items you want to make sure you cover. Recommended is to include the line/page numbers from the plan, the comment, and citations.

5. Decide which topics are most important to you and whether they are most important as questions, comments or both

Use whatever method works best for you, if prioritizing in advance works for you (or if you know your time or energy is limited).  For some, it’s better to just jump in.  I’m doing all of the above at varying intervals.  I’m mostly alternating A and B and will use C for citations.

A. Guidelines & Process Background

I found a good way to get my mind going in the right directions is digging through documents, articles, and past review panel reports.  I’m seeing recommendations from past panels, statistical issues with research used, and just generally having my memory jogged.  I put together a recent ‘rough’ background post that includes some of those resources so far, not yet sorted or described, but just to make them available.

Similar background can be found in documents on the MayDay Project page and Lymedisease.org articles, also included and or to be included in the post linked to above. There are links to guideline review process standards in various locations in the resources linked to above.  There is a link in the anouncement and/or document, and in recent Lymedisease.org articles, and I believe also in the webinar slides.  There is also a video outlining the steps of a review process in relation to the Lyme guidelines in a video linked to int he post noted earlier.   I found it useful, though it may not be up to date.  It was still good background.

B. Start pulling out lines and sections form the plan 

As I go through the document, I note the line numbers I have comments for.  Some of these are based on things I’ve read in the background documents above.  Which is why my approach is still a little bit back and forth.

C. Science and Literature

That, for me, would be a dangerous place to start.  Even with questions in mind I tend to end up creating breadth and a longer list of sources instead of the details I’m looking for.  But you can certainly start there if that’s how you think, or if you already know your direction. Persistent Lyme: MayDay Project website has a list, and there is a list of 293 citations here More: I’ll link to lists or examples if I find them.  But this is as far as I’ve gotten so far, other than brainstorming questions and issues and watching for further examples as I’ve had time.

6.  Watch for more information, examples, templates and citations (and updates to this post, potentially)

Not necessarily here.  In fact, if you see it here and I created it, I’m not sure how I’d be expecting to also have comments to submit.  I hope to travel with my husband and kids if I can next week.

***See Updates above with new Lymedisease.org links, instructions for commenting. I do plan to share citations, comments, ideas, or potential questions as they evolve, if I have time.  But I’m not sure how far I’ll get fast enough. And on that note, please share with me in comments if more becomes available somewhere, as I may be travelling and in need of more info!

Use this link to see my posts on the comment period.

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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 to those that may be looking.  I’ll be cleaning them up, adding to them, and adding relevant Mayday or lymedisease.org links to them as time permits and as applicable.

Understanding (enough of)  the History of the Guidelines and Related Background

Deciding where to start in understanding guidelines is a bit daunting.  I got my start before my diagnosis after wathcing Under Our Skin for the first time.  I’d asked about Lyme a few times during and after Bell’s palsy, since I’d been bit by a tick.  But was adamantly told it was not a possibility.  I remember watching the film, during a then-ongoing Equal Employment Opportunity (EEO) federal discrimination case (to prove I was able to work), and thinking “Thank God that’s not what I have.”  Thinking I was already going through as much as any sick person could take.

It all sounded a bit conspiratorial back then.  Credible, but hard to get my head around.  I looked up Montana’s guidelines for the treatment of Lyme, curious to see if the logic could really be so poor.  And there it all was.  I can say now, there were the words that kept me misdiagnosed for over three years, and that have kept me sick for almost five years so far.

The headings for these resources and sections may seem conspiratorial or accusatory to someone not yet familiar with the background, the parties involved, and the issues at play.  Which leads to the first few over-view type links.

As more information on the links is added, I may include Comment Period Notes (CP Notes) where applicable.  These are as much reminders for me as anything, and doesn’t indicate that the resource is necessary for comments.  There are resources to help dig further in specific directions or to find background enough to answer or formulate questions.

If you are looking for resources to support your comments to IDSA’s March 2015 comment period, or seeking specific types of resources, these links in the first list will probably not provide you with new information, (other than the ‘Arguing Chronic Lyme’ post this blog (listed) which includes links t may be of use).

Basic Background (on Problems, Conflicts, History Surrounding Guidelines)

Background on the Comment Period

*Again, I’d much rather have these organized with more info, but 1) I’m posting in case these links are of use to anyone in the short term (and they fit with specific current questions and discussions), and 2) EVERYONE in the Lyme community needs to pace themselves right now.  We’ve got legislative processes rolling in multiple states, planning happening for multiple events and campaigns in May, and the rapidly moving and extremely evolving Lyme Disease Challenge.

Greater Depth ~ To be sorted soon

Video: Background on reviewing guidelines (not specific to this round, but good background) *interesting, states guidelines not meant to “have teeth” but have been used to revoke physician licenses….where did the teeth come from?  (branches into a primary question of mine, which is where or whether there are teeth to the comment process or review process)

Panel report from 2006 review  http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/IDSALymeDiseaseFinalReport.pdf  *The bar is pretty low….based on what was required under settlement….

Prospective, controlled clinical trials have demonstrated little benefit from prolonged antibiotic therapy. Nearly all primary outcome measures have failed to demonstrate a benefit to prolonged antibiotic therapy. Statistically significant improvements in treatment groups were not demonstrated across studies, were nonspecific, were of unclear clinical importance, and in one case, not sustained at the end of the trial [286, 438, 459, 493, 666].

*MayDay project doc–recommendations pulled from 2006 panel report, added contradictory italicized statements pulled from studies…..

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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 of Lyme disease.

The 90-minute meeting took place via teleconference and was attended by Mayday Project co-founders Josh Cutler and Allison Caruana, along with lead researcher Saby Molina. According to Cutler, this was the first time the IDSA leadership has met with a Lyme patient advocacy group.

The release includes links to multiple resources related to the currently open comment period as well as links to recent facebook statements from the Mayday Project and to documents and articles providing background on activism efforts to date, past interactions with IDSA, and issues related to the guidelines and specific areas of concern.

One of the messages to supporters quoted in the release can be found on their website (HERE) and both can be found on the group’s facebook page.

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

study countyI 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 me catch my breath was the name associated with it.  I haven’t seen that name in writing in over a decade, since leaving the Bitterroot, other than on my daughter’s medical records.  So, being a Lyme patient in Montana, this study hits home for me in a number of ways.

The Study ~ Lyme Disease Prevalence in Ravalli County

I missed seeing the study on the news, but got texts and messages from friends right way, and also got posts from other Lyme patients (people I already knew as well as people I didn’t, which was very neat).

A Public Health graduate student at the University of Montana will be working with Dr. Favara under a UM professor.  Read and watch more about the study at the following locations:

Personal Side Note (Bitterroot/Blaise Favara Connection)

Dr. Favara was my daughters pediatrician, years before I contracted Lyme, and he saved her life.  She had minor anemia that wouldn’t respond to supplements.  When we moved from Great Falls, a doctor I had worked with helped us find a pediatrician that would keep an eye on it.  One day she had a low grade fever and was scheduled for labs.  Dr. Favara’s office called to say she could do bloodwork but didn’t need to be seen.  I couldn’t give a logical reason, but wanted her to be seen anyway (I was a pretty logical mom and completely upfront about the no real reason part).  They called back to say that was a good enough reason, and he saw her anyway.

He noted the fever and asked if that had been a pattern.  It had been, but barely really even elevated.  Like the iron, it was just enough to notice, and not enough to be really alarming or all that noteworthy.  He did a head to toe exam, and felt something in her abdomen.  It was large enough for him to feel and located such that it could be an enlarged spleen.  He started talking to Seattle Children’s Hospital and advised that they’d do their own tests there (it’s hard to remember for sure, but we may have gone straight there rather than waiting on local tests).

She had a myofibroblastic inflammatory pseudotumor.  The story gets longer from there, but the team in Seattle was equipped to recognize it, although it was incredibly rare and had been initially assumed to be cancer.  They saved a lot of time and risk in recgonizing during the initial biopsy that it was something different than they were used to.  So, obviously, it is an understatement to say that we are forever in Dr. Favara’s debt.

Geographical Side Notes (Wrong County, Wrong State, Wrong Tick….)

Officially, Lyme disease cannot be contracted in Montana.  Most state agency websites, as well as a Montana Infectious Disease Doctors’ group via editorial letters, cite the reason as the lack of deer ticks or other black legged ticks.  The problems with this include:

  • Non-black legged ticks have been proven to transmit Lyme to humans (published, peer reviewed studies in addition to numerous patient and doctor accounts and observations)
  • There is no current/recent/published survey data that I have found that supports this.  It would take enormous survey effort to indicate the absence of a species.  North Dakota employed the same logic about the absence of deer ticks and Lyme disease, but surveys in just nine locations this year found deer ticks in six locations, with Borellia burgdorferi spirochetes identified in their guts.
  • Confusion over the geographic distribution of the illness causes enough confusion to keep doctors from adequately considering what disease the patient before them is presenting with. I was precluded as having Lyme based on geography, whereas my doctors should have tested sooner and more rigorously for Lyme and should have considered my tick bite, Bell’s palsy, circular rash, sore throat, chills, jaw pain, joint pain, debilitating fatigue, and ensuing lengthy list of symptoms as extremely strong indications of tick born disease or combination thereof.

tip map and timeline revised cont

4974c-migratorysppquiz

I left a couple of comments on the articles linked above the day after the story aired, one of which I copied here.

On KPAX Article:

Hello KPAX, I am in the Flathead and was bit by a tick in the Middle Fork drainage while working as a biologist in Spring 2010. I had numerous symptoms that I didn’t connect to each other or the tick bite until half of my face and neck were paralyzed. I was told it wasn’t related to the tick because we are in Montana. By fall, I was diagnosed with Chronic Fatigue Syndrome, IBS, orthostatic hypotension (debilitating at the time without medication), a joint condition, and a number of other symptoms and/or disorders, all said to be unrelated to the tick bite, because we don’t have Lyme in Montana. As a biologist, I am wondering how we know this. The argument I tend to find that what I and other patients contracted, with or without positive Lyme-specific bands in lab tests, is either not Lyme (because of our geography) or we got it somewhere else. The clincher is that if we didn’t travel east, we automatically don’t meet the definition of Lyme here. It makes me wonder how we are ever going to have the first documented case that will allow the rest of us to have hope of being diagnosed quickly enough to recover. I was misdiagnosed for the first three years, until leaving the state for testing and treatment. Most of my ‘disorders’ went away when I was treated for Lyme and two other infections I contracted, most likely at the same time. I have precise maps of my location, know fairly precisely where I startled a moose and dove through thick brush. I know from medical literature that transmission of Lyme to humans is not isolated to black legged ticks as the only vector. This is an exhausting illness due to symptoms, but the financial and physical ruin that comes from falling through these cracks makes it very tiring to have to see the same thing happen over and over again to Montanans that contract Lyme here or elsewhere without having better answers as to why we are making these assumptions and why we can’t get care here in our own state. There’s more to this issue than I can account for here, but please be aware that many people over the course of at least the two decades have contracted Lyme here, or as numerous articles have put it in the past, “a related illness from a related tick”. It’s time for this related illness to stop progressing to debilitating illness in treatable patients. Please help us spread information to keep this from happening to more people. Five years post tick bite I am home in bed still recovering, still traveling out of state for care. I fought with every bit of my being and health to continue working and would not have willingly let go of my career for anything. Nor would I have robbed my kids of the last five years of normalcy that they deserved in their childhood.

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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 Disease.

Caldier.Michelle@leg.wa.gov, Judy.Clibborn@leg.wa.gov, Eileen.Cody@leg.wa.gov, Richard.DeBolt@leg.wa.gov,Paul.Harris@leg.wa.gov, Laurie.Jinkins@leg.wa.gov,Norm.Johnson@leg.wa.gov, Jim.Moeller@leg.wa.gov, Marcus.Riccelli@leg.wa.gov, June.Robinson@leg.wa.gov, Jay.Rodne@leg.wa.gov, Joe.Schmick@leg.wa.gov, Shelly.Short@leg.wa.gov, Steve.Tharinger@leg.wa.gov, Kevin.VanDeWege@leg.wa.gov

My last post on this bill gives background links, bill history, summaries, example letters, and further background on the bill in general, which is all still applicable for further information and rationale for supporting the bill:

That post was written after the the Bill passed the Senate floor (unanimously!!) and had moved to the House for it’s Hearing, which occurred today, attended by Co-author Dan Boeholt, advocate Faith Rimirez, and a heartening number of devoted Washington Lyme patients and advocates.

**Comments will still be accepted until the Bill goes into Executive Session vote, either Tues. March 24th at 8am or Wed. March 25th at 1:30.

There are example emails in the post from Washington patient Kristine Moden and myself, as well as templates for friends and family to choose from in addition to the following.

Highly Generic Letter (Suited to Friends/Family/Anyone)

Chair Cody and Committee,

Please support Lyme Bill SB 5448 Recognizing Chronic Lyme Disease.  [Optional:] I have seen first-hand the difficulties in diagnosing and treating this illness through the experiences of my [friend/loved] and the hardship an unnecessary suffering caused by the lack of access to adequate care.

Misdiagnosis and inadequate treatment options currently lead to delayed and inadequate care and, in many cases, permanent damage, disability, or even death.  Many aspects of treatment are poorly understood or poorly acknowledged by most physicians, and permitted treatment options under current guidelines are dangerously limited, as are medical practitioners with specific knowledge and experience in the treatment of Lyme Disease and the many complicating factors and coinfections that accompany it.  Those practitioners with specific knowledge and experience need to be allowed to treat their patients using effective and adaptive tools of appropriate duration.

Please do all you can to support this legislation and to provide for the needs of Chronic Lyme Disease Patients.

Thank You,

[Name]

More at Ticked Off On Lyme WA’s Facebook page.

Video of Hearing: Beginning just before 38 minute mark, ending at 53 minutes

http://www.tvw.org/index.php?option=com_tvwplayer&eventID=2015031049

From Substitute Bill Report, March 3 (Current)

Summary of Substitute Bill: The Medical Quality Assurance Commission (MQAC) must do a study of the effects of long-term antibiotic therapy on patients who have been diagnosed with posttreatment Lyme disease syndrome. The study must include a review ofthe following: Ÿ Ÿ Ÿ Ÿ Ÿ

  • the antibiotics that are commonly involved in long-term treatment of Lyme disease;
  • the side effects associated with long-term antibiotic therapy;
  • the effectiveness of long-term antibiotic therapy of controlling symptoms;
  • whether allowing the practice of long-term antibiotic therapy would be beneficial to the health and safety of Washington residents;
  • and any other aspects deemed important for the health and safety of patients who may receive these treatments.
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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 to comment on their often debilitating, usually lengthy, roads to proper diagnoses, and too often on-going roads to adequate care.  There are compilations of stories all over the web, and they are worth finding from time to time to remember why we need to work together on changing the situation.

There are endless reasons to get in touch with this debate.  We can easily misjudge or forget who we are really arguing with otherwise, and misjudge or forget what points we really need to focus on.  Although it is more than a lot of us can digest, we need to if we want change.  The debate changes constantly, which can be harder to see the less we understand.

Having written this months ago, there are multiple points I may need to update, either because they’ve changed, my health or mind have improved allowing me to grasp something better, or I’ve learned more about a given area.

This week in particular, there are new reasons to learn.  Not the least of which being that IDSA has announced a comment period related to reviewing their guidelines.  I have multiple article links to add in when I have time, but mostly please watch for additional links or posts on the comment period and help from groups with resources and experience to share.

The Argument

The argument against the existence of Chronic Lyme Disease almost always hinges on the statement that there is “no evidence” that Lyme persists beyond antibiotic treatment.

This is a pretty ridiculous and irresponsible statement to make, since there is over three decades worth of evidence resulting in hundreds of peer reviewed, published studies Continue Reading »