I had an excellent meeting with Nancy Bourassa, founder of Lyme411 and member of the New Hampshire Lyme Legislation Committee, this past Monday in Meredith where we had a serious brainstorming session on how the NH State Park Bloggers could better deliver on its promise to run for Lyme Disease Awareness.
Kate and I first saw Nancy in action at a Lyme Disease conference in Laconia that she organized where I realized how little I actually knew about this disease. My doctor told me that you will always have a red ring around a bite and that Lyme is not transmitted from the tick until it is fully engorged so, “don’t you worry about ticks Michele.” I also thought that Lyme is easy to treat so even if I did get Lyme, everything will be okay. I learned that everything I thought I knew was completely wrong.
I learned at the conference that it is estimated that more than 60% of those being tested for Lyme will have tests that come back as negative when they actually do have Lyme. A small percent of those who get treated for Lyme can have a situation called Post Lyme Disease Syndrome and an unknown percent of those treated too late or not at all will develop Chronic Lyme Disease. A ring around the bite or skin rash may or may not be present and the tick can release the Lyme bacteria from its gut at any point if it is removed incorrectly. I’m just beginning to scratch the surface of what is fact or fiction with Lyme Disease.
Lyme Disease is a greatly misunderstood illness by me, the general public, and by the medical community. In order to better diagnose, treat, and cure Lyme Disease, we need to better understand it first. Lyme411 is run by passionate advocates for those living with Acute and Chronic Lyme Disease and are fiercely working to educate the general public about prevention. It was obvious how Nancy is a source of hope and much needed support for many of the 100+ people who were in the room at her conference and the thousands who have heard her message since she embarked on this mission.
Our meeting in Meredith resulted in the NH State Park Bloggers, Lyme411, the Division of Parks & Recreation, and the Division of Travel & Tourism working together to plan a free Walk for Lyme Disease Awareness on Saturday, August 25 at Odiorne Point State Park. We are in the very early stages of planning but we are on a fast track so more details will be coming soon. Please save the date if you want to come to learn more about Lyme Disease from Lyme411 and to help us show support for those who have been affected by Lyme Disease.
– Michele, NH State Park Blogger
Amazing how far reaching Lyme Disease is. In just the last few weeks, I have found out 3 people I know have been recently diagnosed with Lyme disease and have had it for a while. With Lyme being as prevalent as it is in NH, I am surprised it is not screened for on an annual basis as a matter of routine. What a great cause to be running for!
There is a Lyme petition at the following address:
https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX
The petition will only be up until 2/10/13, and we need 25,000 signatures for the White House to review and respond.
This is the best chance for raising Lyme awareness I have seen, so please spread the word!