Lyme Time with Paula Jackson Jones

  Author:  Paula Jackson Jones Orig Pub:  11/25/2017 Nothing reminds you of your illness more than when you’re limited by the things that you can no longer do and the places that you can no longer go. And nothing highlights those limitations more than the holidays. Grieving the loss of holiday traditions, or feeling like you’re letting your friends and family down by staying home or cutting outings short, can elicit so many difficult emotions that no one should have to deal with around the holidays. No one ever thinks that something as tiny as a tick bite can change their life in so many ways, until it happens to them. I sit with people in person and on the phone who are struggling to understand this disease, struggling to make sense of their new normal, struggling to keep it together for their families. Struggling. It’s something that chronically ill people do constantly. Everything is a struggle. Getting up in the morning, even getting through the day. Trying t

Author:  Paula Jackson Jones Orig Published: 11/15/2017 “Strength through adversity. The strongest steel is forged by the fires of hell. It is pounded and struck repeatedly before it’s plunged back into the molten fire. The fire gives it power and flexibility, and the blows give it strength. Those two things make the metal pliable and able to withstand every battle it’s called upon to fight.” [Author Sherrilyn Keynon] It is often stated that some things can only be learned in the storm, forged in the trials of fire. I’ve encountered hundreds of people whose lives were forever changed by the storms that they walked through. I am one of those whose life was forever changed.  I am empowered, not entitled, I survived my storm, and this is my message. I was an active, outgoing, very happy woman before I got sick. I had just gotten remarried, had a wonderful job and life was good. Then I was bit by a tick one fall day while out cleaning up the yard with my husba

Author:  Paula Jackson Jones Orig Published:  11/08/2017 There’s a catchy song Canned Heat released in the 1970’s that goes as follows: Let's Work Together “Together we stand, divided we fall Come on now people, let's get on the ball and work together Come on, come on let's work together, now now people Because together we will stand, every boy every girl and a man” There is something to be said for working together.  English writer John Heywood once said, “Many hands make light work” and the implied meaning was that many hands help make a large or difficult job easier. Like being chronically ill. The more help that a patient has, the better they are of being properly diagnosed, treated and making a full recovery ~ at the very least, it lightens the load that they carry on their journey to health and wellness. We are into week 45 of 2017 and Lyme and tick-borne disease continues to rise with new cases are still being reported. But wha

Author:  Paula Jackson Jones Orig Published:  11/03/2017 There is a phrase that the Lyme community uses that has upset the rest of the medical world ~ Lyme Literate Doctor. This phrase has been developed and used to specifically to highlight those who are highly educated and experienced in diagnosing and treating Lyme and tick-borne diseases. They are heavily networked with other Lyme Literate providers and consult with on difficult cases.  When this phrase has been spoken in a primary care physician’s office, the conversation can take a sudden downward turn.  Most doctors that I’ve spoken with who are not considered “Lyme Literate” take great offense to this phrase because they feel that it implies that they are “illiterate”. The Lyme community uses this as a basis when seeking out a provider who has vast knowledge about the fastest growing, multi-systemic, complex, infectious disease. I personally have no qualms whatsoever about using it. I think it pays honor a

Author:  Paula Jackson Jones Orig Published:  10/27/2017 As October fades into November, I am getting asked questions about Maine’s tick season and I feel strongly about sharing updated information, applying it to what we are dealing with today and not repeating or advancing outdated rhetoric. Maine’s tick season has historically always been defined by the lifecycle of the tick, when the nymphs emerge and are the most active. Since 90% of all tickborne diseases are spread by the nymphs, this is where the vast amount of our focus has always been ~ Spring, Summer and Fall. However, if you are watching tv or reading the newspapers or even surfing the web, you will see contrasting information being shared.  That is because as October merges into November, we are still dealing with a tick problem and this needs to be addressed so that prevention practices are being promoted and we do not see a spike in the number of new tick-borne disease cases. Ticks thrive in c

Photo Credit / Copyright:  Paula Jackson Jones       Author:  Paula Jackson Jones Orig Published:  10/20/2017 “No one told me that this was going to be difficult. I never fathomed that our primary care doctor would not be able to properly diagnose and treat him. Some days I wish her battle would just end because I hate seeing her suffer so much.  We had no idea just how complex this was or how far its reach was. Every part of our life has been greatly affected by this awful disease.” These are just a few comments shared with me by family members charged with the care of their loved ones. As I sat talking with these caregivers, one thing became very apparent to me: they didn’t ask for this anymore than their chronically ill loved one had and yet the despair and hopeless feeling that encompassed these interviews was very heavy. They were taking on the guilt and responsibility for something that was not theirs to take on. But as with any chronic illness, those in the inner

Author:  Paula Jackson Jones Orig Published:  10/13/2017 Cool fall weather and the change in colors lends to familiar sounds of frolicking in leaf piles, haunted hayrides and the scent of warm apple pie and hot cider. As a child, I looked forward to this every year. As an adult, I cringe because I am all too familiar with the dangers that lurk. The news media and most recently, The Today Show, shared of a rare new tick-borne disease, Anaplasmosis, but here in Maine, it is not so rare to us. In fact, it is one of the top three tick-borne diseases that the state surveys. And just how fast is it growing?  In Part One (Statistical Data), I shared in 2016 a total count of 372 cases reported and 2017 year-to-date, we were at 401 by midsummer.  The same tick that carries Lyme Disease also is known to carry Anaplasmosis as well as other tick-borne diseases. Anaplasmosis is not rare, it is here and on the rise in Maine and we are hearing more and more stories of people who are aff

Author:  Paula Jackson Jones Orig Published:  10/06/2017 Imagine being sick and your doctor unable to figure out what is wrong with you. Imagine being sick and nothing relieves the growing pain and debilitating symptoms that you struggle with every day. Imagine friends and family walking away all because you’re sick and no one can figure out why. Lyme Disease is often called “the great imitator” because it mimics so many different diseases. It can attack multi-systemic and vital organs.  This not only makes the doctors jobs more difficult when you do not respond to treatment, but as a patient, you quickly discover how the medical community and even friends and family view your illness. Many of you know my personal story ~ misdiagnosed for over 2 years by over 2 dozen doctors and specialists before finally getting the correct diagnosis, in treatment for over 6 years and now in remission.  For those who know me, know my journey was anything but easy.  It’s not only the dis