Events

LETTER CAMPAIGN TO PHYSICIANS

http://www.cdc.gov/lyme/stats/maps/interactivemaps.html 

Please click on the link above. It will take you to an interactive map on the CDC website. Click on 2001 and look at Kentucky. Then click on 2011 and look at Kentucky again. Amazing how the reported cases actually dropped in ten years yet we have a hundred members in our group and we do not even advertise.

Every year Lyme advocates have a letter writing campaign to the media and to politicians. We constantly try to raise awareness and educate the public. I was thinking one day what good is it if we don’t have any physicians to treat us? We do not have one ILADS trained physician here in Kentucky. How many times have we read that Lyme is rare in Kentucky? It is not rare. Our doctors are not reporting it. One of our own members finally received a positive Lyme test (took several times of testing since tests are unreliable). When the doctor was asked if he reported it, he said it was the lab that was to report it. The patient made sure it was indeed reported!

We are starting a letter writing campaign to Physicians in Kentucky for obvious reasons. We are enclosing our own letter from the executive board members and also two brochures from the ILADS (International Lyme and Associated Diseases Society). One is “What Every Primary Care Physician Should Know About Lyme Disease” and the other is “Lyme Disease Physicians Training Program”. 

We are asking our members if you can bring postage stamps to the next meeting to help pay for the mailings of these brochures. If you would like some copies to send out on your own, that would be fantastic too but we know that many of our members are too ill to help and have cognitive issues. Please believe us, we understand this. We have lived it and we still have issues ourselves.

I currently have an advocate in Danville that was getting ready to go to med school when she got hit with Lyme. I hope to send her 50 brochures because she plans on actually setting up appointments with physicians just like pharmaceutical reps do.

Thank you so much.

Vicki P.

 

 

JOURNEY THRU LYME
I am a survivor of Lyme disease, a debilitating infection that can wreck the body and the mind. Lyme is a rapidly spreading epidemic affecting millions, and it is largely being ignored. I plan to share and leverage my experience to raise awareness, hope, knowledge and financial resources to empower those who face the challenge of Lyme disease and related co-infections. I intend to complete a six month, 2,180 mile journey on The Appalachian Trail (AT) in 2013. As I recover my health, I simply cannot walk away from the absolute nightmare Lyme sufferers face in this country and around the world. So I will walk, and walk, and walk some more. Five million steps on behalf of literally millions who cannot get the help they need, and in far too many cases are being belittled, marginalized or just ignored as they struggle to recover their health and their lives. This is a devastating national epidemic and deserves a national response.On July 9th, I leave for Maine with my friend and trail partner David Klein. We’re driving to Vermont first to spend a couple of nights with my dear friends of 30+ years Kevin and Joan. Then Kevin, David and I will drive to Baxter State Park in Maine on Friday July 12th and stay at a lean-to shelter at the Katahdin Stream campgrounds. On Saturday, July 13th the three of us will climb the mountain to Baxter Peak and the sign marking the northern terminus of the Appalachian Trail. When we descend back to our lean-to, the distance we travel will mark the first 5.2 miles of this trek I call Journey Thru Lyme….Several have asked how they could help with this project. My sincere thanks to all who have already contributed to the effort. Not necessary, your kind wishes, thoughts and words of encouragement are deeply appreciated. If you feel called to pledge (a penny a mile = $21.86), see the instructions below:1. Click on the Donate button on any page of this website.
2. When a PayPal window opens, you can type in your donation amount and then follow the check out procedure instructions. When you are ready to submit, be sure to type: “Journey Thru Lyme Hike” in the “Purpose” window.
3. If you want to do a per mile pledge, please do a $5 contribution as above, and then type the amount per mile in the “Purpose” window before you submit the transaction. We will keep a record of pledges, and credit your initial payment and then email you with a total after I finish the hike.You can follow along here:

http://www.kentuckyindianalymesupport.org/logans-journey-thru-lyme/

https://www.facebook.com/KentuckianaLymeSupportGroup
http://www.trailjournals.com/entry.cfm?id=398996
You can also subscribe to my Youtube channel:
http://www.youtube.com/channel/UCRm4kNKGbjrhDZmTIbVJ1QA/videosThanks for your encouragement and support!
Unitic (guess I better get used to my trail name again!)

Please join us on May 11th @ 5 PM for a free public screening of the award winning film, Under Our Skin. Lyme advocates across the globe are participating in a Worldwide Lyme Protest. Many are hosting events and activities to spread awareness about Lyme Disease. 

 

 

Photos from our public screening of “Under Our Skin” from last May, 2012.

We had a nice turn out.

Our lovely ladies.

Our Lyme table.

Some of our board members – Crazy Logan & beautiful Michelle

Hard at work.

A beautiful soul selling t shirts.