Reprinted from http://lymetimewithpaulajacksonjones.blogspot.com/ with the kind permission of Paula Jackson Jones. To read the original article, click here.
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 writing for weeks now about the need for continued use of repellents and prevention practices because I am seeing first hand that the number of new cases of Lyme, Anaplasmosis and Babesiosis continue to rise. Just last week, a local paper wrote about a man suffering from the devastating effects of Babesia. Early this summer, a 2 year old, a teenage and a 41 year old woman (all from out of state) died from complications from misdiagnosed Rocky Mountain Spotted Fever. And just 2 weeks ago, a CT man died from complications with Babesia.
So on one hand, we’re told that Lyme and tick-borne disease is no big deal and on the other hand, the media is reporting preventable deaths. NO BIG DEAL? Tell that to the family’s who have lost a loved one due to complications from Lyme and tick-borne disease. With all the up-to-date research, with expert advice and instruction that for endemic regions, by all accounts Lyme and tick-borne disease is to be treated based on clinical symptoms and that testing is not always reliable. And yet, I am still hearing, years after fighting my own battle, that drs are still relying on unreliable tests and treating with outdated guidelines. People are still walking around sick and there is no excuse for it!
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Lyme Protest at State Capitol House, Augusta, Maine 2014
If it walks like a duck and sounds like a duck, most of us would call it a duck, right? But what if, amid all that information, a provider continued to reference an online but outdated source in order to diagnosis you? Or worse yet, rely on information that they knew from years ago but have not gotten any up-to-date training on new guidelines, symptomology of co-infections and treatment options? If you always do what you’ve always done, you’ll always get what you always got, right? Sheep.
I’m ranting because years after I was misdiagnosed and mistreated by educated medical providers, I am still hearing the same stories from today’s patients. Why Why Why?? Why are people today still being misdiagnosed? Why, in this endemic region, are people still being mistreated. But more importantly, why are our medical providers in the heart of the endemic region not recognizing this immediately? Why are they not learning from the death’s and severe cases?
Medical providers from Yale, Harvard, John Hopkins and many other educational establishments are on the cutting edge of medical break throughs in hopes of making a difference in the lives of patients. With research constantly expanding, these doctors live in the up-to-date moment of testing and treatment options. They are discovering new strains, with new symptoms, resistant to mainstream treatment.
The ILADEF Physician Training Program, a groundbreaking project vital to fostering excellence in care for Lyme disease patients, directly addresses challenges in properly diagnosing and treating Lyme and other tickborne diseases. The Training Program provides medical and other healthcare practitioners the opportunity to study with Lyme-literate healthcare professionals. Through this experience, participants will develop the skills necessary to properly diagnose and treat Lyme disease. These professionals will be able to return to their community with enhanced skills and the ability to provide superior care to Lyme patients, improving the health and quality of life for those that suffer from the most debilitating effects of Lyme disease.
LymeCME.info is a website dedicated to bringing reliable scientific and medical information to the attention of healthcare professionals. LymeCME.info provides accredited CME programs on Lyme disease and other tick-borne illnesses for physicians and other healthcare professionals.
With all the available medical training, there is no excuse for doctors to be so divided where Lyme and tick-borne disease is concerned. The outdated IDSA guidelines that so many providers CHOOSE to follow has a single footnote at the bottom that reads as follows:
These guidelines were developed and issued on behalf of the Infectious Diseases Society of America. It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances.
It was never intended to be mandatory, therefore, cannot account for individual variations or supercede a physician’s knowledge in light of each individual’s circumstances.
Paula Jackson Jones is a survivor of late stage neurological Lyme Disease complicated by four co-infections (Babesia, Bartonella, Rocky Mtn Spotted Fever and Erlichiosis) that were misdiagnosed for over 18 months before she connected with a Lyme literate provider ~ she was doctor #24 and she forever changed Paula’s life.
Paula then began a journey that she didn't understand but quickly learned and discovered that she has a passion for supporting and educating others. In May of 2014, she co-founded and became the President of Midcoast Lyme Disease Support & Education, which has been a full-time, year-round job for her. She enjoys sharing her personal experiences and what she has learned on this journey with others, afflicted by or looking to prevent tick-borne disease exposure.
She has overcome many hurdles in her lifetime, from domestic violence to addiction to chronic illness and has chosen to use her experiences to help others, revealing her scars, sharing her personal story and showing them that they too can overcome.
She is a dog-loving, optimistic #Lymestrong extrovert who can do anything she puts her mind to and she loves connecting with people! You can learn more about her and her work at: http://lymetimewithpaulajacksonjones.blogspot.com/.