Lyme Time with Paula Jackson Jones

It All Started When ...

Wed, 07/17/2019 - 4:00pm

On March 31, 2017, my very first column was published in the Lincoln County News. This platform for sharing information and educating the public on tick-borne disease prevention and safety tips as well as being a resource for patients and their families to get the help that they needed took off and has yet to slow down. I look back on the three years of public service writing my column and the five years of advocating on behalf of patients afflicted with tick-borne disease has never slowed down. What has grown, beside the number of new cases each year, is the public awareness that the media is broadcasting, trying to teach about this epidemic taking place in our state. Last Spring, Senator Collins took an interest and introduced to Congress the $100M TICK Act bill that demands (federally) that we allocate our resources to better improve research, to further physician education and to pave the way for access and affordable patient resources where tick-borne disease is concerned. Because the problem is only getting worse as we fight so diligently for solutions and access to resources.

I started down this road as a patient who had been misdiagnosed, mistreated and, how I felt, discarded by our medical society. When they couldn’t figure out what was wrong with me, they deemed that nothing with me and clearly, I was making it all up. And for what? Attention? Because twenty-three doctors and specialists couldn’t figure it out in the two years that they had me and so to save face, I was making it all up? Then how is it that doctor number twenty-four and twenty-five not only figured it out but was able to offer me proper treatment and with doctor twenty six, get me into remission, after 4 years of steadfast treatment?

That personal journey inspired me to turn around, jump back into the trenches, leading patients and their families to much needed resources as they navigated their way through a muddy and controversial river towards health and wellness.

Sadly, this model of unprofessional medical behavior continues today as patients share with me statements of how their primary medical provider “doesn’t believe in chronic Lyme Disease” or they are told “We were told that we do not treat chronic Lyme Disease here”. How do you not treat something when it is presented to you? Just because you don’t believe in it doesn’t mean it doesn’t exist. It is more likely that they do not have the experience or the knowledge to diagnose and /or treat beyond the acute phase as that is all they were taught or that is all that they choose to believe in.

I do not understand, with all the new science, research and media exposure uncovering new strains of ticks and tick-borne diseases, how medical providers can continue to bury the heads in the sands and deny that acute cases of tick-borne diseases that are misdiagnosed are turning into chronic, debilitating conditions that are wrecking-havoc within our communities statewide. By definition, any medical condition that is persistent or reoccurring is considered ‘Chronic”. [Sidebar: Anyone who cares to argue that point can take it up with Merriam-Webster]. There are adults and children succumbing to misdiagnosed tick-borne diseases all because their medical providers are choosing to not treat. They are turning a blind eye and turning sick patients back out on to the streets. And worse? They are documenting things in patient records that will forever proceed every medical appointment and slant their ability to get fair treatment. By the grace of God, when I went to meet with the provider who saved my life, she has not gotten any of my medical records in advance. So, I had a clean slate for her to figure out what was wrong with me. Not many patients are so fortunate. When they are advocating for themselves, they are listed as combative, argumentative. When they try to find a provider to help them manage their pain and debilitating symptoms, they are noted as “drug seeking”. And when cry or break down in a provider’s office from the sheer frustration of their minds and bodies breaking down from an infection and migrating physical pain that has yet to be diagnosed, they are referred to a therapist.

Would these same medical providers do that to a cancer patient? Or someone newly diagnosed with diabetes trying to management their hunger and blood sugar? I can tell you, from first-hand experience, that those medical visits and the support that those patients receive and do not have to fight for are freely given with mockery, distain or arrogance.

So, call me a broken record but by the mere fact that I survived something that has taken so many, I have a renewed strength, a sheer will power of fight within me, to make a difference where I live and in the state that I live in. If we can identify the problem, then we can create solutions and those solutions might look like educated physicians or it might like patient advocacy groups that exist to guide patients to much needed resources.

Either way, until the growing epidemic slows down, we have a need for medical providers who are willing to step up and help the patients who are discarded by the institutions who “don’t believe that chronic Lyme Disease exists” or that “don’t treat chronic Lyme here”. There is a need to educate the public on prevention and options should they have a tick encounter. And while it doesn’t look to be slowing down anytime soon, I guess we shall meet here every week with information and education to protect and empower one another.

As my favorite poet Maya Angelou wrote, “Do the best you can until you know better. Then when you know better, do better.”

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 or visit