Lyme Time with Paula Jackson Jones

National Lyme Disease Association conference recap

Posted:  Thursday, November 8, 2018 - 7:45am
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Doctors, researchers, scientists, patients and advocates all connected this past weekend in Providence, Rhode Island for the 19th annual Scientific Lyme Disease Conference that the National Lyme Disease Association co-hosts with Columbia University.

New research, new revelations, new tests and new protocols were shared from domestic and international experts in tick-borne disease with the over 200 who attended.

I had volunteered to help with the conference and was honored to have met and talked with so many new and familiar faces to share not only my personal story but what we are doing here in Maine. It was a real privilege to meet some of my own heroes whom, up until this weekend, I’ve only heard or read about.

To say that I’ve been busy for the past couple of weeks would be an understatement. Hence, the reason my column has been MIA for the past two weeks (and thank you to those who reached out to me).

In October, every weekend MLDSE was busy. First with Bath Citizens Day, then with Applefest in Nobleboro, Mid-month, we were at a three-day trade show in Augusta for the Maine Snowmobile Association, sharing prevention information for the trail groomers and resources for others who have been afflicted by tick-borne disease. Networking to get more information out to all their members and affiliates is an exciting opportunity that we’ve been given and one that will keep us busy going forward. Then, in between the trade show and ending the month with a five-day trip down to Rhode Island for the national Lyme Disease Association conference, I participated in a health fair at the Wiscasset Communication Centers for the Lincoln County employees. Another wonderful opportunity to share prevention and awareness education as well as future networking for their employees.

But I am back, well rested and really excited about changes that I know are coming down the pike.

On Nov. 14, we will be participating in the Maine Center for Disease Control’s Infectious Disease conference at the Augusta Civic Center. This event is for medical providers and it is an event that I am very much looking forward to. I will be armed with information about the latest research studies, evidence-based protocols, new lab testing and treatment protocols as well as continuing medical education courses and webinars. My rep from Igenex will be with me all day and I foresee many interesting conversations, to say the least. And as always, I am prepared for those who continue to follow outdated guidelines and antiquated protocols to come forth and argue with me, how chronic Lyme doesn’t exist and how people are healed after just 14 days of treatment.

I am always prepared for these conversations because I’ve been having them ever since I was bitten back in 2009. Facing naysayers who’ve never walked in my shoes, countering outdated information with current facts and evidence-based case studies is my approach to every conversation. I don’t need to discuss what was, I need to educate what is so that those who are struggling to get a proper diagnosis, struggling to access and afford treatment, struggling to get their health back don’t have to fight so hard. If the federal government can acknowledge that a group and subcommittees are needed to identified problems and bridge the gap of tick-borne illness from yesterday into today, then I think I can handle whatever it takes to get the state of Maine onboard, one medical provider at a time.

Calendar items: MLDSE will not host any support meetings in December, January or February. Our last meetings for 2018 are as follows: Nov. 7, Brunswick, 6-8 p.m., Dr Michael Noonan DC will speak on pain management through chiropractic care; Nov. 13, Rockland, 6-8 p.m., Lyme and Tick-Borne Disease Talk: Prevention, Awareness, Diagnosing/Treatment with MLDSE, Dr Liz York ND and Paul McFarland, owner of Tick Talk Maine pest control company; Nov. 19, Damariscotta, 1-3 p.m., Lyme Support Meeting. For more information about these meetings and locations, visit www.mldse.org

Even though we are not meeting through the winter, I can always be reached at paula@mldse.org and I promise I will stay in touch with my readers each week through my column.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org and visit her website www.mldse.org