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 29
th, 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 child or pet specific Lyme information?
Here or
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.
