Lyme Time with Paula Jackson Jones

It’s the final countdown

Posted:  Monday, April 22, 2019 - 4:45pm
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This Friday, April 26th, my organization will be hosting our 5th Annual Midcoast Lyme Disease Support & Education conference at the Augusta Civic Center from 8 a.m. to 5 p.m. Doors will open at 7 a.m. for registration. Admission is free.

This is by far one of the most important events we host every year. We quickly outgrew the Wiscasset Community Center by year three. Last year, we had just under 900 in attendance. People from all over the U.S. and Canada came. They came to be connected to the free resources that we were offering. Whether they were a medical provider looking for more education or connections to updated testing and diagnostic tools or patients looking for a medical provider or better treatment options to aide them on their journey back to health and wellness, everyone came looking for something. Everyone who walked through those front doors had a need.

This is “the why” we host our conference every year. Why we bring in expert medical providers and laboratories to share the latest discoveries and to explain why existing tests and treatment protocols providers are using are failing. It has been 10 years since my tick bite and medical providers are still using the same fallible tests in their offices and still quoting the same outdated mantras with regards to treatment protocols and labs that they claim practice “quackery.”

To those medical providers, I ask this question: What are you so afraid of?

Clearly, it’s not of being sued due to medical negligence although that is occurring more and more these days as patients find themselves misdiagnosed and projected into an avoidable state of chronic, debilitating health.

Many other health conditions freely allow more leeway for the patient to have a say in how they want to be treated and to be able to have these conversations with medical providers who are willing to listen.

But not for a patient with tick-borne disease.

Who they see matters and will determine the level of care that they receive and the outcome of their recovery. Just as there is no generic cancer doctor, there is not generic infectious disease doctor. They all have more education and more experience in a certain area. I can not tell you how many patients have been mocked and dismissed by infectious disease doctors ~ who ~ are to this day, still following outdated guidelines and protocols. So just how does that benefit their patients? It does not.

This is why we host our annual conference, with speakers who are experts in the field of tick-borne disease, each with a unique focus, from testing to treatment to the psychiatric manifestations of tick-borne disease. When a misdiagnosed infection takes over your body, you can expect mood changes and even behaviors that mimic mental health disorders. Address and treat the infection and those behaviors go away. Mask them with pharmaceuticals and you prolong the patient’s suffering, aiding the spread of the infection.

Would you be surprised to learn that there are Infectious Disease doctors who agree things need to change?

So when a medical provider comes to our conference and receives more education, has a better understanding of how tick-borne disease presents (solely and as a co-infection), learns more about the severity of symptoms and has access to better testing and newer, more effective treatment options, they can offer better care to their patients.

For the patients and their families who attend, they also received a better understanding of just how tick-borne disease manifests itself, how it varies and how co-infections make it harder to treat. They are better informed and better educated with choices to be able to better advocate for their own needs. But more importantly, they are exposed to an entire room saturated with knowledgeable and experienced medical providers, with state of the art testing and with treatment and support resources to help them find their way back to health. They can ask questions and fine tune their needs all for free.

And for the general public who are seeking ways to avoid having tick encounters, there are companies offering products and services for them to check out and see if they are a good fit for their personal needs.

Everything A-to-Z relating to ticks and tick-borne disease all under one roof, one day, free of charge!

Why do we host this free event every year? Because we want you to know that better diagnostic services exist, that better treatment options are out there, that there are medical providers more educated and experienced in treating all phases of tick-borne diseases including co-infections but importantly, that remission and better health is achievable.

I was misdiagnosed by 23 doctors and specialists for over two years. Now in remission, when I see them and share what I’ve been through, I’m met with “Well, clearly your situation is an exception” to which my response is, “No, I’m not an exception. I’m part of the growing norm that is misdiagnosed and mistreated every day by doctors like you. But here’s how we can change that …”

For more information about the conference, visit conference2019.mldse.org and if you or someone you know is struggling and needs our help, please visit our website www.mldse.org and see all the services that we offer for free!

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