Lean On Me

Author:  Paula Jackson Jones
Orig Published: 11/29/2017 

How do you explain to someone something that they have never personally experienced? We use analogies but sometimes even that is not enough. Sometimes, until someone experiences what you are going through, there is going to be a void in the fullness of understanding.  When I give a prevention talk or share my personal story with someone newly diagnosed, I use a lot of analogies to help make the connection to better understanding. Tick-borne disease is a very complicated disease and until someone experiences for themselves firsthand, there is going to remain a void.

Such is the case with prevention. I can talk until I’m blue in face about the importance of using prevention products on your skin and clothing and pets to protect against a tick encounter. I can educate that ticks are still active in temps above 32 degrees. But all that goes by the way side until someone finds a tick embedded on them, their child or pet. Then panic and confusion sets in.  Add in the myriad of advice given to them by family and friends and that brings their fear factor to a whole new level.  I anguish over newly reported cases knowing what they are potentially up against.

In support meetings, I find using analogies helpful. Regarding treatment, I talk about putting out a fire in a burning house. Enter the fire fighters to extinguish the fire and stay until the fire is out completely because failure to extinguish the fire completely gives cause for the simmering embers to flare up again, causing further damage. I always use the onion analogy. I liken treatment to peeling an onion ~ it has many layers that often cause tears and you never know what is waiting in lay underneath.

I’ve been writing this column now for 36 weeks and I have, as they say, “skin in the game.” You see, I’m a survivor of late stage neurological Lyme Disease that was further complicated by four co-infections (Babesia, Bartonella, Rocky Mtn Spotted Fever and Erlichiosis), who didn’t present as a text book example, who had to fight to be heard and validated, who had to navigate blindly through the medical battlefield for over two years and through twenty-three doctors and specialists who misdiagnosed me time and time again before finally finding a provider who knew what was wrong and properly diagnosed me.

Me with my Lyme provider who saved my life, Dr Sarah Ackerly
[Photo credit: Paula Jackson Jones]

I get asked all the time ~ WHY? Why did I have to see so many medical doctors and why was I misdiagnosed time and time again? Unknowingly to me at the time, these doctors were following guidelines and protocols written for acute cases only.  Two years post-tick bit, and incredibly ill, I was told me that with 14 days of antibiotics, I would be “cured” and yet I remained symptomatic with debilitating health.  At the time, I didn’t realize that ticks carried so many different tick-borne diseases and that contracting more than one complicates not only testing but treatment.  I didn’t know that the infection could spread and become multi-systemic: musculoskeletal, neurological, central nervous system, cardiac, gastrointestinal and infiltrate major organs.  Most doctors operating under these old guidelines won’t recognize what is presented to them and they will misdiagnose and mistreat.  As a patient, this is not something that is easy to face, especially when research is constantly presenting updated information. What do you do? Where do you go?  As someone who has been through it and is now in complete remission ~ I say this ~ Lean On Me!

Lean on me, when you’re not strong

And I’ll be your friend, I’ll help you carry on

Because I know now and I know from firsthand experience as well as from helping others. I’ll share my story with you. I’ll share my knowledge and education. I’ll share my resources. I’ll get you connected to people who can and will help you. Why? Because I have been there. I was dismissed. I was rejected. My concerns were not validated. But I found people, medical providers and other support resources, who are not only extremely knowledgeable about Lyme and tick-borne disease but have years of experience helping people get better.  There is your testimony. They help people get better!

Completing a 5K following remission from neurological Lyme and coinfections
[Photo Credit:  Angela Columbe]

 We know that Maine is an endemic state and yet most primary care doctors continue to choose to follow guidelines that were written for acute non-endemic regions and that, in Feb 2016, were removed from the federal National Guidelines Clearinghouse for being outdated.  So why would a medical provider willingly choose that when there are more up-to-date, scientifically evidence-based guidelines written that include instructions for endemic regions ~ such as Maine?  That is a conversation that you would have to have with them. And when you don’t find the answers that you are looking for or you get dismissed ~ Lean On Me!

~ Paula

[Paula is the President of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org]