When the news about a Worldwide Lyme Disease Awareness Day began to circulate, and the invitation went out for volunteers to start putting together the various projects, Martha Boden of Charlton accepted the challenge on behalf of upstate New York. Marty, along with her colleague Vanessa Holden who is coordinating the NYC rally, agreed to tackle the task head-on with no formal organization or structure to support their efforts. As word got out, the Lyme community joined the effort, and our Albany Rally event is now just days away (see Home Page for details).
Marty has worked endlessley for months (I won't say "tirelessly", because she's exhausted!) to get the permits, to develop the concept, to organize the event, solicit, schedule, and confirm speakers, call, cajole, investigate, beg, etc. etc. and we're down to the final week.
We want to have a dramatic showing of people who want Albany to know it's time to deal with Lyme. We need our doctors protected from the harassments of the Office of Professional Medical Conduct, an organization that has made it a habit of targeting the doctors who treat to ILADS Guidleines. We need legislative reform to require insurance companies to cover ILADS treatment for advanced Lyme disease. We want more education -- ILADS education, for all doctors, nurses, and others who need to recognize Lyme disease in the clinical environment.
And we need money for research.
But right now we need to thank Marty Boden and Vanessa HOlden and the organizers of the Worldddwide Lyme disease Awareness Day campaign, for turning on the spotlights and getting them focused on these critical issues. Thank you, ladies.
We've made it through another winter, and already reports are in that the ticks are out and the dogs are bringing them into the house. It's time to shake out the cobwebs and remember the essentials of awareness and prevention, especially as we all start spending more time out of doors. Cover up, wear light colored clothes, use insect repellent with at least 25% deet, tuck in your pant legs, wear a hat, check yourself, your children and your pets when you come in.
Check out an interesting product called Tick Tubes, which you scatter around the perimeter of your yard in the spring to help keep the tick population down.
Also, it's been recently reported that as little as 5 minutes in a hot dryer will kill ticks attached to your clothing, so take off your clothes and toss them in the dryer for a little while. You can also spray your clothes with permetherin (NOT YOUR SKIN!!). Read the instructions VERY CAREFULLY for permetherin.
We're gearing up to participate in the Worldwide Lyme Disease Awareness Rally in Albany on May 10. Details are still a bit sketchy, but we will report back as soon as they firm up.
Happy Spring!
WINTER - 2013
Those of us who spend a lot of time talking about tick borne diseases also spend a lot of time worrying about ticks. For three seasons a year, we manifest a (healthy?) anxiety about ticks in our environments, on our pets, lurking with nefarious intent anywhere that we might want to tread. We're a nervous group. But with a foot of snow on the ground and the temperature forecast to go below zero in another couple of days here in the Glens Falls area, we can finally take a break from our collective anxiety about the ticks. May they all freeze solid!
The highlight of our activities in 2012 was the What's Next Forum hosted by Congressman Chris Gibson at Skidmore College. It's often difficult to tell if events like this have any significant impact, but in the case of this event, we have seen some firm and welcome results. We noticed that the July-September 2012 Newsletter of the VHA HIM Coding Council devoted an entire article to the information the author learned by attending the Forum, and this author reports that the council that is responsible for medical coding will be expanding the recognized codes for Lyme disease from one general all-purpose code to seven more specific subcategories of Lyme. As convoluted as this might sound, this is very good news. Insurance companies depend upon the codes to define the permissible treatments, and expanding the scope of Lyme impact may possibly translate into a broader array of allowable treatments. Time will tell, but this is good news.
Lymedisease.org, the phenomenal California-based advocacy organization (formerly CALDA), asked if we would write an article for their upcoming edition of Lyme Times. The format and the goals of the Forum were quite unique, and Lyme Times was interested in how we came to creating this type of a forum. The edition has just been published and should be available very soon.
We are working on some plans for the upcoming year. One of them will be to create a Facebook page so we can communicate with our community more effectively and efficiently.
We wish everybody a healthy and happy New Year. -- Chris Fisk
Happy Fall to All!
We're back to work developing our programs for the upcoming months. Check the "EVENTS" tab to see what's up next.
It bears repeating that ticks are still active in the Fall, and they are still interested in a blood meal at this time of year. We often see children playing in piles of leaves, and this can be very bad news if that leaf litter contains hungry ticks.
This is a beautiful time of year, and everyone should go outdoors to enjoy the great weather and the beautiful scenery, but be sensible, and be sure -- and pass this on to your friends and family -- be sure you check yourself, your spouse, and/or your children after handling leaves this fall. Watch for ticks in children's hair. Check your pets.
Know the signs and symptoms of Lyme disease (see the Facts tab above), and if you believe you have contracted Lyme disease, get 21-28 days (at least) of treatment.
Hello All- In my continuing efforts to gain the attention of the the scientific, medical, and legislative communities on the Lyme public health crisis, I submitted a photograph of a structure called a biofilm produced by Borrelia burgdorferi (the Lyme disease agent) to a "photo contest" sponsored by the American Type Culture Collection (ATCC), an international repository of culturable organisms. The Borrelia culture we use in our laboratory experiments was purchased from ATCC. The photo I submitted was taken by Bob Myers and appeared in the "Connections" article about our research last fall. There are two categories in the contest. One is scientific value, and the other is "most popular". So I'm asking you to click on the link below and vote for the "Biofilm of Borrelia burgdorferi" picture. If the photo wins either category, there will be recognition at the American Society for Microbiology (ASM) General Meeting and on the ATCC website. Two things will come of this -- the winner gets an i-Pad, which can be raffled to support more research efforts, and most importantly, this will be the FIRST time that Borrelia's ability to produce a biofilm will be recognized by an INTERNATIONAL community of scientists. Hard to believe when you look at the picture that there's any doubt ... but, there is. So please just click here, click on the "Vote" tab and locate and vote for the "Biofilm of Borrelia burgdorferi B31" (careful - there are other biofilm pictures of different bacteria): http://www.atcc.org/CulturesandProducts/2012ATCCMicrobialPhotoContest/tabid/2068/Default.aspx And then also maybe forward this to 10,000 or so of your closest friends and encourage them to vote also. Thanks for your support! Holly Holly Ahern Associate Professor of Microbiology SUNY Adirondack 640 Bay Road Queensbury, NY 12804
For the past several months we have been meeting with Congressman Chris Gibson's District Director, Steve Bulger, to help him understand the issues that are involved with Lyme disease and other tick-borne illnesses and why we need the Congressman's help with this issue. For a disease that's so relatively young, it's an amazingly complicated story to tell. We are extremely fortunate to have in Steve Bulger and Congressman Gibson people who have taken the time to really listen to us as we've explained the microbiology, the politics, the victims' suffering, and all the other complex issues that make up this mess.
Indeed it is a mess, but it's a mess that can be dissected into its various component parts and addressed piece by piece. With this in mind, we've worked with the Congressman's office to create a unique forum to look forward -- to ask "What Needs to Happen NEXT to Relieve the Suffering of the Victims of Tick Borne Diseases?" If we can find some ways to improve some things, that will be a good day's work.
Unlike a scientific conference where presenters need to offer and defend their research, this forum is an "ideas" event. We've asked a broad spectrum of leaders in various fields to come up with new ideas about what needs to happen NEXT. These are "ignition statements", presentations geared to start some new thinking, new solutions, collaborations, or whatever might be inspired by the event.
We hope to accomplish several things at the end of the day. First of all, we want to do what we can to help break the log-jam that is preventing significant advancement, and to identify ways to benefit the victims by advancing new, creative, and though provoking options to the current status quo. We know there is some common ground that all sides of the Lyme debates can occupy together to help move the effort forward. Secondly, we want to present a show of force that there are a LOT of victims suffering with Lyme and the other infections that come with it, and that we want attention and ACTION. It is our hope that the policy-makers and the media will get the message that this is a serious and significant issue that calls for accountability and action.
You are all invited to attend. Please request that your legislators come to hear the speakers, as well. If we want change, it's the legislators who will have to make that happen!
Everyone is welcome. Please be sure to pre-register at www.lymenext.org so we can get a clue about the headcount.
The Lyme Action Network is up and running! We've rescheduled our first "official" public event with a presentation by Prof. Holly Ahern for March 7, 2012 (the storm on Feb 29th forced a reschedule. Sorry for any inconvenience.) Check the "Events" page for more details. We are sending out our launch announcements to the press, and talking to several experts in the field to set up some speaking engagements. We have some wonderful people on the organizing committee, and I'm sure you'll be hearing more about our work as we gather steam. Stay tuned...
With various experiences with Lyme disease and the miserable co-infections that accompany it, the community members who formed the Lyme Action Network understand that there is a lot of confusion, misinformation, and frustrations that accompanies the entire subject. Through this website and especially through this blog, we'll endeavor to provide you with information to help advance understanding of the disease and the challenges we all face in addressing it.
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