There is no cure for Lyme disease. And there is great controversy and medical division surrounding diagnosis and treatment options. Medical professionals who treat Lyme often don’t work with health insurance, thus treatments and initial testing can become astronomically expensive. There are still many in the medical community at large that won’t even give Chronic Lyme disease the time of day. The CDC is still eons behind on the protocols and practices that they advertise on their website. There are still people across the whole country-heck, the whole world- who don’t know what to do when they have been bit by a tick or what the signs of having been bit are. The infectious stigma on Lyme in our society is still there, that it is hard to get and easy to treat, thus perpetuating the cycle of misinformation.
It begs the questions: how do we change this? How do we fix it? To whom can we turn to help us? Where do we go from here? The answer is the people. The people who have been fighting this disease–the warriors. The ones who persevere year after year, the ones who become survivors in the face of immense odds. The people that become professional patients, expert medical advocates, the ones who deserve an honorary Doctorate in Lyme disease. The very same people who tirelessly help to raise awareness, the beautiful few who give their life for the cause.
I had the immense pleasure to speak with one such person last week. She is one Paula Jackson Jones, President and co-founder of Midcoast Lyme Disease Support & Education (MLDSE)-a non-profit 501c3 organization here in Maine. The reason this organization works is because it is fueled with pure passion. Paula and fellow co-founder Angele Rice have been directly affected by the evils of Lyme disease and its threatening coinfections. It is the personal connection to the cause that provides these two their endless motivation.
MLDSE was a vision that Paula and Angele shared and brought to fruition in 2014 to forge an easier path to community and statewide resources for those afflicted with Lyme and tickborne disease. Angered by the fact that resources were available but that no one was talking about them or making them easily accessible, Paula and Angele decided to do something to rectify this problem that so many Mainers faced. “It’s not like we were going to change things overnight, but by collecting all this information into one place and making it easily accessible to people was a start.” They began networking right within their own communities of Lincoln and Sagadahoc Counties (the two hardest hit with Lyme disease) and 3 years later they haven’t stopped, slowed down or looked back.
The main goal of this organization is in their motto: building bridges to fight Lyme disease together. They are in the business of opening minds and changing lives. Raising awareness, advocating for change and supporting those affected. 100% of the money they receive goes directly back to the people of Maine. To be clear, no one makes any money off of this. It is an incredible feat to create such an organization and have it thrive successfully, affecting the change that it does, helping those who need it. “We receive donations from all over, from people and businesses who help support the work that we do to raise awareness and foster education. We’ve been the recipients of educational grants for 2 years in a row and in the Spring of 2016, we became the Maine partner of the national Lyme Disease Association” says Jackson Jones.
First and foremost, they educate about Prevention. How not to have a tick encounter, how to avoid exposure to tickborne diseases. If, however, you have been exposed or think you’ve been exposed, they have the resources readily available on their website to give you immediate and direct information from tick removal methods, to where to test the tick for disease, to a detailed symptom list and checklist that you could take to your Primary care provider (PCP). If you find that your PCP is not well versed in tickborne diseases and not sure how to proceed, MLDSE is networked with over 100 Maine Lyme literate providers and they are happy to make a referral. There is no need to beat up your PCP. There is, however, continuing education information on their website as well as up-to-date treatment guidelines.You went to someone who doesn’t believe you? You reach out to MLDSE and they will find you the help you need, the help you deserve.
MLDSE holds five support group meetings a month across the state, year ‘round and holds regular prevention talks. In addition, MLDSE has established funds to financially support Mainer’s who need to get tested for Lyme disease. Getting the initial test results, while expensive, is often the missing puzzle piece that people don’t get until it’s too late. It is an essential step that could prevent years of treatments and worsening symptoms.
One impressive feat in particular, is the fact that medical professionals and organizations have reached out to MLDSE to partner with their organization to combat the growing epidemic and to provide much-needed resources for the people of Maine. They are well valued and respected in the professional Lyme community and were invited to join Maine’s CDC Vector-borne Workgroup in the fall of 2015. Furthermore, they also spend a lot of time walking the talk. They are that valued and respected in the professional Lyme community. Furthermore, they also spend a lot of time being on the other end of that. They have personally gone from medical office to medical office armed with information to further education about treatment guidelines, continuing education opportunities for medical providers, educational pamphlets, websites and Maine Lyme legislation (that they were actively part of getting passed into law) to affect change in the greater medical establishment as a whole. Their passion fuels their endurance and drives the desire for change.
Now to the main event: on April 29th, 2017 MLDSE will be holding their third annual Midcoast Lyme disease support and education conference from 8AM-5PM at the Wiscasset Community Center in Wiscasset, Maine. This is a free event, however, donations are gladly accepted, and is open to anybody who wants to go. This event will have a panel of speakers ranging from Doctor’s to authors of books on Lyme to representatives from Igenex. A Lyme-literate physician Q&A discussion will also be happening. This amazing conference is packed to the gills with free resources and I would urge all of you who support, suffer, survive, or yearn for more information to attend the event (more information here).
And if that is not an option, then at the very least check out MLDSE’s amazing and informative website. Their website is a virtual archive of incredibly helpful information. There are resources for everything from A-Z as it pertains to Lyme and tickborne disease.
Need financial assistance and don’t know where to look? Go here.
Need information about support groups across Maine and beyond? HERE!
Want to know what exciting events MLDSE has in store for the future? This is it.
I’m telling you, they’ve got it all. I think anybody would be lucky to stumble upon this organization for help. And there’s nothing stopping you–they are extraordinarily kind, helpful people who are there for you because they have been where you are.
So if you or someone you love has Lyme, check them out. If you’re a medical provider who wants to learn more, check them out. If you want to partner with them, check them out. Paula Jackson Jones and Angele Rice of Midcoast Lyme Disease Support & Education (MLDSE).
A huge shout out to Paula Jackson Jones for giving her time, expertise and input! I could not have done it without her.