As a nonprofit organization whose mission is to raise awareness, foster education, advocate for change, and provide local support to Maine’s Lyme community, we truly enjoy engaging with the communities and hosting or participating in events that help further along knowledge of tickborne disease. Plain and simple: we enjoy helping people get better!
Tickborne disease can be confusing to diagnose and even more difficult to treat. With a mindset that a tick bite causes only Lyme disease, we are conditioned to look for the bull’s-eye rash and if/when it does not present, we are left wondering why we feel so horrible. With testing that is unreliable, many continue to walk around infected and don’t even know it. Many have a different tickborne disease altogether or co-infections that were never addressed. It’s during these community times that we get one-on-one connection with people, sharing our experiences, listening to their stories and concerns, and giving resources and direction. People want real answers and tangible results, and they want restored hope that they can get better. Having been down that road and now in complete remission for over three years, this is as real as it gets.
We engage locally with people as much as possible because one can’t just go to the internet and get the answers. If anything, one comes away feeling more confused and baffled by the variances among medical providers. Some go by a clinical examination, others strictly by testing; some follow outdated guidelines and treatment protocols while others stay up to date with the current protocols and treatment options. Some medical providers say you’re cured after 14 days of antibiotics, while others understand the complexities of tickborne diseases, including delayed diagnosis and the potential need for longer treatment and supportive measure to rebuild. Part of being out in the community and raising awareness and sharing information is educating people, empowering them to the options that are available to them and giving them control over their own health issues.
There are lots of avenues one can travel when ill, choosing from mainstream Western medicine to alternative Eastern medicine. The introduction of integrative medicine, using the best of both worlds, gives the patient the best possible outcome, from deciding which protocol to use to kill off an infection to implementing supportive medicines that help rebuild and strengthen. It’s allowed and accepted with other diseases — tickborne disease should be no different. We are fortunate to be networked with more than 100 medical providers in Maine that are highly educated in tickborne disease and that use a variety of treatment modalities. We like to say that seeing a provider that has a large tool box is your best bet as a patient to get better because there is no one-size-fits-all approach to treating tickborne disease and no two patients present alike. Symptoms and medical histories vary as well as genetics. Treating a patient with a tickborne disease needs to be individualized.
Look for us, Midcoast Lyme Disease Support & Education, on Aug. 19-26 at the Union Fair; we will be in the exhibition hall every day from 10 a.m. to 4 p.m.
In September, we’ll be at Tractor Supply in Brunswick (Sept. 2) and at Applefest in Nobleboro (Sept. 30)
In October, find us at Autumnfest in Bath (Oct. 7) and in Augusta at the weekend-long Snowmobile Trade Show at the Civic Center (Oct.. 20-22).
For medical providers who want to learn more about tickborne disease, the 2017 International Lyme and Associated Diseases Society conference is going to be in Boston, Mass. Go to ilads.org for more information.
As always, one can go to mldse.org for information about tickborne disease, referrals to medical providers, and other support resources such as meetings and financial assistance. It’s our pleasure to engage one-on-one with our local communities, addressing their needs and providing free resources. It’s what Midcoast Lyme Disease Support & Education is all about!
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, the Maine partner of the national Lyme Disease Association and member of Maine CDC’s Vector-borne Disease Workgroup. Email her at paula@mldse.org or go to mldse.org for more information.)
