Wednesday, February 11, 2015

Lyme Disease: Mixed Messages

Photograph of Angele Rice Co-Founder of MLDSE

Lyme Disease: Mixed Messages

Editor’s Note: This is part 1 of a 2-part commentary.
How frustrating are mixed messages? Not only to the one on the receiving end of the message but also for the one in the middle who is supposed to be doing something about it. What does one gain from sending a mixed message?
Where's the story? 1 Points Mentioned
Well, let’s ask the Centers for Disease Control, whose official position is to survey, regulate and use confinement protocols with regards to infectious diseases. Yes?
Well, what if said conglomerate was to send a mixed message, calling a disease “infectious,” “epidemic,” and “fast growing,” but doing next to nothing to contain or stop it from growing. Now the general public hears the words “infectious,” “epidemic,” “fastest growing” and that is enough to warrant concern...or is it? Because we, the public, think that we’ve been exposed to this “fastest growing, infectious epidemic” disease and yet when we seek medical attention, we begin to receive mixed messages. Those mixed messages come in many forms:
. Lack of knowledge and education from our trusted medical provider
. Sporadic symptoms we’re experiencing, confusing our doctor
. Misdiagnosis after misdiagnosis
. Delayed diagnosis leading to further damage
. Faulty testing and inadequate treatment protocols
. Antiquated guidelines
So, for the one who has been exposed to this “fastest growing, infectious epidemic” disease, they begin to hear mixed messages. Their trusted medical provider tells them that either they don’t have it or that they might have it or that they do have it and take pills for (x) number of days, that they will be “cured.” But this patient is also hearing on the news, reading in the papers and on social media information that is contradicting what their trusted medical provider is telling them. So what are they to believe? After all, their doctor is a highly trained medical professional who has gone to medical school, has practiced medicine for a number of years and, who has earned their trust by treating them and their family’s previous ailments with success. On the other side of the fence is a group of people, strangers to most, who are sharing some very disturbing and very contradicting information. Mixed messages.
The CDC likes to portray this group as fanatical, as people suffering from mental health issues (they like to say that we have depression and liken our pain to that diagnosis and try to pawn us off on a counselor). They will even go as far as to acknowledge our lingering symptoms, but lay claim that we are no longer suffering from Lyme or any sort of tickborne infection and that in time, we will all get better. They dismiss us and write us off.
Now this same CDC group works closely with the Infectious Disease Society of America, who has active case studies about other infectious diseases, including how the disease evolves; they even rationalized the need for new vaccines and updated treatments in order to keep up with the evolution of said diseases. They are all over influenza and the measles, for example. So much noise has been made about influenza and the need for prevention to control the spread of contact from person to person. They once made as much noise about HIV and AIDS, first segregating the disease to the homosexual community while putting the rest of the world at ease, all the while IV drug users and promiscuous sexual partners had no idea they were at risk. Mixed messages.
One would think that a governed body of minds would have learned from past mistakes and even recent ones (i.e, Ebola) and would act on the side of public safety rather than pride. And, that they would take in all evidence from both sides of the argument and act for the betterment of the people that they are supposedly here to serve and protect. What ever happened to FIRST DO NO HARM? Oh, they claim it’s science that is guiding their research and decisions. However, discoveries have uncovered that the self-serving reasoning goes far deeper and into much darker crevices.
In August 2013, the CDC went public with a Press Release, acknowledging that the number of Lyme Disease cases here in the United States was far greater than they had previously reported and possibly even higher, admitting that their surveillance methods were never meant for epidemic proportions. Their word, “epidemic.” Again, mixed messages.
So, is Lyme Disease the “fastest growing, infectious epidemic” disease since HIV/AIDS? To the parties that are fighting for changes to the current system of guidelines and protocols, fighting for better diagnostic and treatment options, fighting for their lives and the lives of their friends and family members; that would be a resounding and unanimous “YES”!!
And who are the people who are making all this noise for change? To the one unaffected by Lyme disease, it would appear to be a bunch of bitter members of a social grass roots community, out to stir the pot and cause trouble, or protesters just looking for some attention. But stop for a minute and look closer. Look beyond the person holding the protest sign. Look beyond the people behind the table at a local Lyme disease event. Look beyond the people in your home town who are posting about Lyme Disease on social media. When you slow down and take a closer look, you will be surprised at what you find!

Next week: Part 2 — Lyme Disease, Mixed Messages: Noise Makers
Written by Paula Jackson Jones 
Published by The Brunswick Times Record 

Photograph and mixed media by Angele Rice Co-Founder of MLDSE