Lyme Time with Paula Jackson Jones

Good news alas bittersweet

Mon, 01/15/2018 - 10:30am

They say that victory is sweet and, I say, depending on how you’ve been waiting, it can be bittersweet. As many of you know, I am a survivor of late stage neurological Lyme and co-infections turned advocate. I am also a member of Maine’s CDC Vector-borne Work Group (VBWG) and at our meeting last week, we received some statistical data about Maine’s Lyme and tick-borne problem. It was a preliminary year end wrap up for 2017 with final data due to come out in the Legislative Report in February. Not surprising, the number of new cases of tick-borne disease were up across the board. We had a very mild fall and that allowed for a longer period of activity for the ticks. Now I’m not going to say that it’s because people stopped wearing repellent or practicing prevention methods but there was a spike of new cases late fall when most people think that tick season is over. Wrong!

When temperatures are above 32 degrees, ticks will roam looking for their blood meal. There were reports of ticks in December even after snowfall. Ticks get into wood piles, Christmas trees, anything they can to hibernate for the winter when temps drop and when they sense the temps warming up ~ like when you bring firewood into your warm home. This is when using prevention practices for inside your home comes in handy to stop them before they get to you or your pets! Cleaning products that contain eucalyptus and lemongrass oil repel ticks naturally. Treating indoor/outdoor rugs with permethrin stops ticks in their tracks (spray somewhere safe and allow to fully dry). We’ve had some crazy weather so far from Arctic winds to thawing foggy damp days and its enough to keep the ticks active and throw us off guard.

So, the news that I got from the VBWG meeting to share with you is this ~ Lyme disease, Babesia and Anaplasmosis cases are up from last year and there are other tick-borne diseases now on the radar. But are we really surprised? With an increased tick presence, everyone one I talk to knows someone who’s been bitten by a tick and/or afflicted with a tick-borne disease. What surprised me were the comments being made. It was quickly identified that the most endemic region was Midcoast Maine and many comments made were about the data now supporting the media hype. Now mind you, there has to be a period of data collected in order for any public announcement to be made. So, I spoke up and stated how glad I was that the reality I have been living for the past nine years now has evidence-based data to back it up that. I went on to say that I felt that the efforts being made to raise awareness and education were finally working, that medical providers were understanding better what they were looking at, that people were getting more accurate diagnosis and we now have the data to back it all up.

So, what does that mean? It means that we still have a tick problem here in Maine and that prevention efforts are needed now more than ever. It means that ongoing education for medical providers is needed more than ever. They need to know what they are looking at and when co-infections are involved (which is very common), they need to understand how that complicates testing and treatment. It means that pressure needs to be put on researchers for better and more accurate diagnostic tools and that as a society, we need to come to together with faster treatment for acute cases before they become chronic. It means that we, as individuals, need to advocate more and know what we can do to protect ourselves, our families and our pets. The only defense that we have now is what we choose to do ourselves ~ chemical or natural/organic ~ we must do something because these ticks have a one-track mind = find a meal host = and they do not discriminate adult, child or animal.

Back in September, I had reported year-to-date total new cases as of August 2017: Anaplasmosis = 401, Babesia = 82 and Lyme disease [borrelia burgdorferi] = 1,487.

The preliminary data shows the total number of new cases for 2017 (Jan-Dec) are Anaplasmosis = 662, Babesia = 117 and Lyme disease [borrelia burgdorferi] = 1,619. There are approximately 1,600 outstanding reports that will need to be classified if/when they come so these numbers could potentially and will most likely go up [remember, the federal CDC stated that the number of Lyme disease cases needed to be multiplied 10x for a more realistic count]. These are confirmed and probable cases only based on criteria set by the federal CDC. Cases that do not fully meet the criteria, but were given clinical diagnoses and treated, do not count for state surveillance measures.

So, yes, we do have at tick problem and yes, tick-borne diseases are on the rise here in Maine. However, it has now risen to a level where it is finally getting the attention and acknowledgement it so rightly deserves. This has been my reality but to hear it finally acknowledged, it’s not a media hype, it’s real data concerning real people. This is not in our heads. We are not making this up. We are not crazy. We are finally validated. Alas, bittersweet.

Paula Jackson Jones is president of Midcoast Lyme Disease Support & Education, a nonprofit 501c3 and Maine-partner of the Natl Lyme Disease Assoc and member of Maine CDC Vector-borne Workgroup. You can reach her at paula@mldse.org or visit their website www.mldse.org