When Lyme is Gray

Author: Paula Jackson Jones
Originally Pub:  09/08/2017

It’s not easy being an advocate and talking with sick people every day, hearing similarities between your own journey and their struggle and trying to find the right words to not only comfort but to give them hope that they too, one day, can return to health.

That is what life in the gray feels like.  Not everything is black and white.  We’re comfortable with black and white. Things are what they are.  Cut and dry.  It’s the gray that is scary, all the unknowns and questions that go unanswered, sometimes for great lengths of time causing you to question everything around you, even yourself.  The gray is where the Lyme community tries to figure out how to adjust to their “new normal”, a life filled with pain and migratory symptoms that you’re told to live with, that cause you to cancel your plans at the last minute, a life where planning becomes obsolete and isolation becomes your friend.  Why? Because it’s too hard to explain to som…

Lyme Rant!

Author:  Paula Jackson Jones
Orig Published: 09/01/2017

This week’s article, I’m calling my Lyme Rant, is based on the outcome of my week-long stay at the Union Fair, from all my community interactions with people and from my 3+ year odyssey as a Lyme advocate warrior. It’s based on first-hand experience as a patient, as an advocate and as someone who is not willing to settle for status quo.
As a society, we’re being fed conflicting information from many sources. One source says Lyme and tick-borne is hard to catch but easy to treat. Another source strongly recommends using repellent and prevention practices as tick-borne disease is on the rise here in Maine, with a heavy concentration in the Midcoast region. Another source (finally) admits that current testing is faulty and that a medical provider must go by clinical symptoms to make a diagnosis and treat, while yet another source states that in order for you to have a positive confirmation, you must meet certain criteria.
I’ve been writ…

Lyme Time At The Fair

Author:  Paula Jackson Jones
Orig Published:    08/24/2017

As I sit writing this week’s article, I am 6 days into the Union Fair and oh, what an emotional week it has been.  I truly enjoy talking with people. I always have.  My grandmother used to tell me that I have an old soul. I have a heart for helping people. So, to be surrounded by people at a local fair for an entire week ~ I am in my glory.

Our booth has been flooded with visitors of all ages, some touched by tick-borne disease and others who want to know more about prevention.  Many avid readers of my column pleased to meet me in person. Many shared old wives’ tales and debunkable myths while others question why isn’t the state of Maine doing more about the tick problem. Many came to the booth, pensive after listening to me share my personal journey and found validation of their own. And when handed resources to enable their journey towards health and wellness, through tears and hugs, were once again renewed with hope.
I spoke w…

Find Us At The Union Fair

Author:  Paula Jackson Jones
Orig Published:  08/18/2017

We are preparing for a very busy week ahead, when we will be spending the entire week at the Union Fair (Aug 19-26), educating fair goers about ticks in Maine, the diseases that they carry and how prevention is key to staying tick-free. This will be our third year at the Union Fair and we have a great corner booth inside the Exhibition Hall.  You can find us there every day from 10a-4p.
We enjoy engaging with the community and helping them to understand what is happening in Maine and how to avoid having a tick encounter, thus lower the fear factor and allowing them to enjoy being outdoors. We share our own experiences and connections to resources to help those struggling find their path back to health and wellness. We also network and grow with opportunities to speak outside the fair. 

We still have some weeks left to the summer to play outdoors so as always, I caution you to continue using repellent on your skin, treating your clot…

Engaging In Community Awareness

Author:  Paula Jackson Jones
Orig Published: 08/11/2017

As a nonprofit 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 tick-borne disease. Plain and simple:  We enjoy helping people get better!

Tick-borne 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 bulls-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 tick-borne disease all together 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 concern…

Prevention Recaps

Author:  Paula Jackson Jones
Orig Published:  08/04/2017

As summer stretches into August, our battle with ticks remain strong and so must our attention to prevention practices.  It may seem like repetitive information but as the number of new cases of tick-borne disease continue to climb upwards and the phone calls and emails looking for assistance continue to come in, I will be right here sharing with you all that I know from firsthand experience.
Back when I bitten by a tick, I wasn’t thinking about tick repellent or tick checks. I was enjoying my time outdoors without any awareness as to what was lurking right in my own yard. Until I was bit, misdiagnosed repeatedly and my entire life turned upside down, I had no idea of the importance of all of this. But trust me when I say that I hear it daily.  People call, email and Facebook message frantically looking for answers and directions.  People don’t understand why the answer isn’t simple, why there is so much incorrect, outdated and con…

HELP! I've Been Bit by a Tick! Now What?

Author:  Paula Jackson Jones
Orig Published:  07/28/2017

This is the number one question that I get on a regular basis, via phone call, email and in person. People who have had a tick encounter struggle to find the next step.  It’s easy to become overwhelmed and disoriented by all the information you find on the internet, which is why when people reach out to me, I give them options.   Bringing down the fear factor is my main concern and giving people options gives them back control over their own health concerns, a potentially unnerving situation.
The most common advice I give:
1) If you still have the tick, get it tested! Know what you’ve been exposed to. Without symptoms, if you test too soon and your body has not begun to produce antibodies, testing can be unreliable, give a false negative. And many providers will not treat with antibiotics without symptoms.
2) While you wait, boost your immune system. There are lots of homeopathic remedies that are safe and available in your local n…