Thursday, August 25, 2016

Why We Do What We Do...



Day 5 at the Union Fair ~ Midcoast Lyme Disease Support & Education ~ raising Awareness,  fostering Education,  Advocating for change and providing community Support to those affected by Lyme and tickborne disease. 

WHY? Because WE share a very common thread:

"I really was sick, so very sick and my doctor didn't believe me, didn't know how to help me.   Instead, they passed me around from doctor to doctor, specialist to specialist until one day, one very special amazing day, I met my Lyme Literate provider.

I was listened to...
I was heard...
I was validated...
I wasn't crazy...
I was saved...
I now had a plan...
I found support...
I had a new sense of self, that I was actually going to survive this nightmare..."

If this is you or someone that you know, please get them in touch with us.  We have resources, we have support, we have answers and we can give them hope ~ 

Midcoast Lyme Disease Support & Education
Paula Jackson Jones (207) 446-6447
Angele Rice (207) 841-8757
Email:  midcoastlymediseasesupedu@gmail.com
Web:    www.midcoastlymediseasesupport.blogspot.com

#Lymestrong

Wednesday, August 24, 2016

Wiscasset Lyme Disease Support Group Meeting Reminder




Union Fair: August 20-27th





     Today was Senior Citizen Day at the Union Fair and to say that our booth was busy would be an understatement!!
With senior citizens one of the leading age groups for high # of cases of Lyme Disease and with Anaplasmosis and Babesia on the rise here in Maine ~ there were lots of stories, questions and concerns that were met with answers, direction, support options and a newfound sense of hope.
For these seniors to learn that treatment is still an option and that there are Maine doctors who can help them, it was like getting a new lease on life!
My volunteer helper today, Benny Borkowski and I were met at our booth at 10am by a dozen or so folks just waiting for us to open up. As we were setting up, we were flooded with conversations. As we began to address each question and concern, we noticed another crowd layer closing in on us and before we knew it, it was 2p and we had been standing, talking and giving support nonstop since 10a!!
I had a gentleman approach me with my business card in his hand. After he told me the story of his friend who was suffering terribly from Lyme, he looks at my card and asks me if Dana was my husband. When I said Yes, his response was, "GOD bless you for everything that you are doing. I know your family and I know your story. I know what you've been through with your lyme fight and I want you to know that what you're doing is making a difference. GOD bless you for putting yourself out there and being a resource for helping folks" and then he shook my hand and gave me a hug.
People needed to know that they don't have to suffer with these symptoms, that there are Maine doctors who are very knowledgeable about Lyme and tickborne disease ~ diagnosing and treating.
Engaging with these folks, listening to their stories and empowering them with hope and knowledge is beyond words.
That's when hugs and tears say it all <3
If you know someone who is suffering from Lyme and tickborne disease, someone who has been treated but is still sick, someone who is questioning their test results or someone who is struggling to get tested, diagnosed or treated ~ contact us.

To View Current Daily Times That We Are At Our Booth Please Check Our Facebook Page!

We are a free resource here in Midcoast Maine with statewide and nationwide connection.


Thursday, August 18, 2016

CDC urges Mainers to take precautions as tickborne diseases surge

http://wgme.com/news/local/health-officials-urge-mainers-to-take-precautions-as-tickborne-diseases-surge

CDC urges Mainers to take precautions as tickborne diseases surge
AUGUSTA (WGME) -- The Maine Center for Disease Control and Prevention is urging people to take the necessary precautions to avoid tick bites as the warm weather continues and Mainers are enjoying outdoor activities.
The Maine CDC has received a record number of reports of tickborne diseases. And while most people think of Lyme disease when ticks are mentioned, others such as anaplasmosis and babesiosis are on the rise, according to the Maine CDC. All three of these diseases are carried by the deer tick, which is also known as the black-legged tick.
Providers have reported 424 cases of Lyme disease so far this year. In all of 2015, 1,206 Lyme cases were reported.
As of Thursday, providers reported 224 cases of anaplasmosis compared to 186 cases in all of 2015. Maine’s previous high for anaplasmosis was 191 cases in 2014, according to the Maine CDC. Symptoms of anaplasmosis include fever, headache, malaise, and body aches.
Providers also reported 56 cases of babesiosis cases this year, compared to 55 cases reported in 2015. The Maine CDC says symptoms of babesiosis include extreme fatigue, aches, fever, chills, sweating, dark urine, and anemia.
Ticks can be found statewide, but the risk for anaplasmosis and babesiosis is highest in the southern counties and Midcoast region.
The Maine CDC recommends following the “No Ticks 4 ME” approach:
  • Using caution in tick infested areas: stay on paths and avoid brushing against high grass or shrubs
  • Wearing protective clothing: wear long sleeve and pants, or clothing treated with permethrin
  • Using an EPA-approved repellant: apply repellent according to labels, paying particular attention to how often it needs to be reapplied
  • Performing daily tick checks: pay special attention to warm protected areas like the nape of the neck, armpits, groin area, and behind the knees.

Please go to our Prevention Tab which has tips for you're skin, clothes, pets, home, and yard.  The more layers of prevention you put in place the better!


 

MLDSE at the Union Fair

FOOTNOTE

The next time a Dr tells you that they follow the CDC guidelines or that they adhere to the IDSA guidelines (even after you tell them that those guidelines that they pledge allegiance to were pulled off the National Guideline Clearinghouse back in Feb 2016 for being outdated), bring this to their attention ~ the single Footnote at the bottom of the IDSA/CDC guidelines:
______________________________________________
FOOTNOTE: These guidelines were developed and issued on behalf of the Infectious Diseases Society of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances.
_____________________________________________

And yet, even with these "voluntary guidelines" we had to fight for laws to protect our Lyme doctors for doing just this ~ making the ultimate determination of our care based on our individual circumstances.
Your Maine PCP needs to know about this. They need to know that IDSA/CDC guidelines were pulled out of the federal database for being outdated, they need to know that ILADS guidelines are the only guidelines currently on the NGC website and that Maine law LD422 protects them to treat chronic lyme patients.
If you need information to take to your provider, please visit our website or send us an email.
www.midcoastlymediseasesupport.blogspot.com
midcoastlymediseasesupedu@gmail.com

Upcoming Events



Midcoast Lyme Disease Support & Education is hosting 3 upcoming Lyme support groups with experts speaking on the subject of medical marijuana and Lyme Disease:
Thursday Aug 18 Boothbay Harbor 6p
Tuesday Aug 30 Wiscasset 6p
Tuesday September 13 Rockland 6p

If you are unable to attend one of these meetings but want to learn more about medical marijuana and Lyme Disease, Uprooting Lyme is hosting an online webinar. For more information, click on the link below.
http://www.uprootinglyme.com/webinar/ 
Cannabis For Lyme Disease, with Shelley White
Date: Tuesday, September 20th, 2016   Time: 8:00 pm EST   Cost: Free!
 

Guest Speaker in Boothbay Harbor



http://m.boothbayregister.com/article/medical-marijuana-caregivers-maine-speak-boothbay-lyme-meeting/74389

Medical Marijuana Caregivers of Maine to speak at Boothbay Lyme meeting

On Thursday, Aug. 18, Darrell Gudroe, board member and community educator for Medical Marijuana Caregivers of Maine (MMCM), will be speaking at the Midcoast Lyme Disease Support & Education Lyme meeting. This meeting will be held at the Community Center, Meadow Mall, Boothbay Harbor from 6-8 p.m. and is open to the public.
In 1999, Maine became one of the first states in the country to legalize cannabis for medical use and in 2009, passed a law allowing a person with a doctor's certification to purchase medical cannabis from a caregiver or dispensary. In 2010, MMCM was formed as trade association to help provide advocacy and education surrounding this medical need.
Medical doctors are integrating medical marijuana more and more with treatment protocols to those suffering from chronic and painfully debilitating illnesses and Darrell will share with us how MMCM is supporting that need here in Maine.
For more information about this meeting or the organization, please contact Paula Jackson Jones (207) 446-6447, Angele Rice (207) 841-8757 or visit their website www.midcoastlymediseasesupport.blogspot.com