Pitfalls of a Broken System By Paula Jackson Jones

pitfall is a hidden danger or un- suspected diffi culty. Often, we are blinded by trust or our desire to just feel better and so we are not really seeing how things are, until we look back. I am speaking from fi rsthand experience as I had no idea that the medical providers that I was trusting with my health had no idea what I was dealing with, let alone know how to properly treat it. If I had, I might not have lost all that time, all that money and all those dreams. What com- pounds this brokenness even further is all the media coverage of tick-borne disease and my fi ve plus years of publicly sharing what I have personally gone through and still seeing all the hurdles that patients are continuing to go through.


Where tick-borne disease is con- cerned, we have a broken system.

“A search for truth seems to me to be full of pitfalls. We all have different understandings of what truth is, and we'll each believe - or we are in danger of

each believing - that our truth is the one and only absolute truth, which is why I say it's full of pitfalls.” ~ Jocelyn Bell Burnell

PITFALL #1: Physician Knowledge Knowledge and experience are all

over the map and each provider thinks that they are right, to the point of argu-

18 ELM® Maine - May/June 2020

ing with their patients and other pro- viders. Unreliable diagnostic tools are still being used because most medical providers think that they can use one test. WRONG! Each tick-borne disease has its own test and its own treatment. The ELISA and Western Blot tests are only looking at one strain of Borrelia (Lyme Disease) and we have multiple strains here in Maine alone. We also have other tick-borne diseases that initially present a certain way and so married with the idea of a tick bite (or the presence of a tick bite), patients and providers automati- cally think, “it’s Lyme Disease!”. Did you know that Relapsing Fever is here in Maine and it looks like Lyme and it acts like Lyme, but the test is always negative? So, some providers will treat and others will not, and all the while the patient remains sick with a tick-borne infection staring them in the face that no one can give name to.

Everyday, I speak with patients on the

phone and by email, asking me if they are on the right track or begging me to connect them with a Lyme provider who won’t argue with them and who will treat their infection properly. It may come as a shock to some readers but not all medi- cal providers are knowledgeable where

tick-borne disease is concerned. What is disturbing is how varied the treatment protocols are even amid science that disputes outdated protocols that doctors today continue to follow.

PITFALL #2: What Are You Treating? If you don’t know what you have,

how can your provider possibly treat it and treat it adequately? Doctors are giving their patients a one-size-fi ts-all treatment. WRONG! Do you know how many patients have reached out to me over the past 5 years and told me that they were initially not clinically diag- nosed with Lyme Disease because they had a negative test? And since then, other symptoms have arose and once they were connected to a Lyme Literate provider, co-infections were discovered, diagnosed and treated and they got better.

“If they are not looking for it, they

won’t see it” ~ Dr Charles Ray Jones, leading pediatric lyme specialist

PITFALL #3: This Is What You Have But You Can’t Afford To Treat It

Here it is, in a nutshell. Insurance companies get their information on how to treat from various governing enti- ties (I’m not going to lay blame on one single group) and if the medical provider

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