“With Great Power Comes Great Responsibility”

“With Great Power Comes Great Responsibility”

This last week with the coming of the New Year, I have been reflecting a lot of my life, life in general, and those that are battling their own health crisis issues. There are many serious health issues out there, such as heart disease, cancer, diabetes, bulimia/anorexia and so many more that many of you have never heard of, but, they all hold one thing in common. They each cause you to look at your entire life differently.

In my journey to become well, I, of course, went through a state of denial, anger, depression, acceptance and even what I’d call bargaining with God and the devil. I even skimmed through a book that I had set aside dealing with the grief cycle when I lost my brother and father within in months of each other. What was the worst was dealing with the Roller Coaster ride of my emotions and good days/bad days.   And the endless onslaught treatment cocktails and all the side effects that came along with them. Each day I would pray and hope for the calm, which I came to the understanding may never come and dreamed of the day that I’d be able to stop those horrible cocktails. This entire experience opened my eyes and my soul. It reshaped me as a person.

I have begun this year by reading a few different books, listening and watching videos of various individuals fighting for their lives. I recently read a book, The Upside of Down by Kristine Dexheimer, I found myself re-living my feelings and emotions; I had most certainly met some of the characters she created and they seemed like old friends to me. Of course, there were certain aspects that I did not undergo but have lost friends and family to Cancer. (I’d definitely recommend this book to anyone to read; the way it approached her experience was quite different but very entertaining and imaginative.)

My plan for this year, at least one of them, is to broaden my horizons and open my mind to new experiences. In my past I loved reading and absorbing as much as I could then, of course, I was knocked down by Lyme disease and reading was the least of my worries, don’t get me wrong, I absolutely love to read! But my focus was on being able to feed, bathe and clothe myself, believe me, you may think, these types of menial tasks, what in the world would be so difficult? But Lyme had affected my central nervous system and many of my motor skills didn’t quite work the way I wanted them to.

In my search to acquire more knowledge, I saw a post on Facebook that has drawn a lot of attention by many that are undergoing what I so thankfully had personally experienced and had overcome. However, there are many that have not been as fortunate. Many do not know the how serious Lyme Disease can become if it’s left undiagnosed, untreated or undertreated. What has caused quite a stir?

The Infectious Disease Society of America did not realize that its recent post would become, as Dorothy Kupcha Leland of LymeDisease.org (formerly known as California Lyme Disease Association) termed “Viral”:

Infectious Diseases Society of America – “What would you like to see from your society in the coming year?” January 4, 2011

Leland positively says,”Most of the postings refer to the IDSA’s Lyme treatment guidelines, and the negative effect those guidelines have on Lyme patients. The comments I’ve read have generally been respectful in tone. Apparently, some were not and have been removed.

The person running the IDSA Facebook page alluded to that, making the following post: ‘IDSA wants to encourage open dialog, however, please note that personal attacks against the society or its doctors, foul language, and other abuse will not be tolerated on our Facebook wall. IDSA takes Lyme disease very seriously, for more information visit: http://www.idsociety.org.’

I also don’t condone ‘personal attacks against the IDSA or its doctors, foul language and other abuse.’ Yet I understand the deep well of resentment that can give rise to them. The IDSA may claim that it ‘takes Lyme very seriously,’ but the patient experience is very different.”

Leland goes on to say quite nicely: “Recent articles from some of the IDSA’s top Lyme guys even call Lyme patient advocates a ‘threat to public health.’ (Gee, IDSA, is that an abusive statement about me?) “

My sentiment is that you may voice your opinion but remember to state it in a way that shows respect and decency. However, some may say “what is good for the goose is good for the gander” or “if you are going to dish it, be ready take it.”

Since Wednesday, January 4, 2011, I have read many of their comments and to LymeDisease.org’s Leland’s, Touched by Lyme: IDSA learns what it means to “go viral” on Facebook”, there are nearly 2,000 comments which you must also read to get a better picture of why so many are very passionate about their feelings.

What does this say to me?

I recall a quote from the movie, Spiderman, “with great power comes great responsibility.” As I strive to become a better person this year and broaden my horizons, I implore the IDSA to do what is best for the patients.

●Do what’s right and open your eyes to the medical evidence that, at times, prolonged treatment does more good than harm. It takes great strength to show that sometimes we are human and we do make mistakes:

●Do what’s right and help those that don’t fit the “cookie cutter” approach in treating Lyme Disease.

●Do what’s right and make the necessary guideline modifications that are needed so that the thousands that are continuing to suffer with Post Lyme Syndrome a/k/a chronic Lyme Disease can recover and regain their lives.

●Do what’s right by accepting all the evidence that shows that the Lyme Disease bacteria can persist after the prescribed outlined treatment guidelines which may mean setting aside your egos.

●Do what’s right and open your eyes to see that this disease is not “one size fits all” and everyone should be allowed the necessary treatment according to their needs.

●Do what’s right and let the doctors that know how to treat Lyme disease do what is best for their patients.

●Do what’s right so that others can regain their lives and live their lives like me absolutely no lingering symptoms.

In 2012, I will do my best to become a stronger, better person. And to you IDSA, I ask: 

Isn’t it about time for you as well to strive to do a better job in helping those that you have been entrusted to help?

You may want to start by changing your presentations.  Here is a comment made January 2012: 

Karla L. – “The Infectious Disease Society of America claims that they care about Lyme patients. DON’T BELIEVE THEM!!! On Wednesday, I went to a talk by an Infectious Disease Specialist entitled “Chronic Lyme Disease.” The speaker was scheduled to speak with doctors in the board room of the largest teaching hospitals in our area. The first slide of his talk was titled “What do you do when a patient asks you to treat him for a disease that he does not have?” The entire rest of the talk was designed to give physicians ammunition so that they can avoid treating patients with chronic Lyme disease. Over and over again in his presentation, the speaker distorted the research on Lyme disease, while denigrating the scientists and physicians with differing viewpoints. One member of the audience asked him, why his slides used such inflammatory language. His reply was that he didn’t believe in long-term antibiotic use, because it wasn’t safe. In his confession, I believe that he revealed the true agenda of the Infectious Disease Society of America. It’s not about the quality of life for patients with chronic Lyme disease; it is a misguided effort to curb long-term antibiotic treatments. It also reflects the inability of the physicians in power at the IDSA to impartially and critically analyze the data, and to realize that the studies supporting the early simplistic model of this complex bacteria and its accompanying co-infections are flawed.”

Additional blogs on this subject and a few that may help to understand their pleas:

Touched by Lyme: IDSA learns what it means to “go viral” on Facebook”

IDSA Comments: Part 1-10 from WhatisLyme?

Lymepolicywonk: Idsa Guidelines Lack Evidence—Don’t Call It Evidence Based If It’s Just Your Opinion  

LYMEPOLICYWONK: IDSA explains why “evidence” is not necessary for “evidence-based guidelines”

Unprecedented Antitrust Investigation into the Lyme Disease Treatment Guidelines Development Process