Jenna’s Lyme Blog

Back in 2007 when I met with a top specialist in one of Harvard’s teaching hospitals in the Boston area – who actually taught about infectious diseases at Harvard Medical School, I recall with such clarity (especially considering my Lyme fog) the complete shock I felt when he announced to me that he knew I had all the symptoms of Lyme disease, but that he did not believe in chronic Lyme disease.

He said, “I don’t know what you have, but I know that you DON’T have Lyme disease!”

Even more shocking, (but at the time so early in my major crash I didn’t understand the full implications of what the doctor was becoming so agitated about,) was when this hot shot doctor went into a full tirade about how Dr. Steere, the supposed top scientist and medical doctor in the field of Lyme disease had been receiving death threats.

Death threats…those words rolled around in my fog-filled brain without making any sense until I had a more sympathetic doctor explain it to me in a way I could understand:

The author of the death threats felt Dr. Steere was standing in the way of progress.  This seems so very obvious to me now!  But I still couldn’t understand what anyone could hope to achieve issuing death threats, no matter how persuasive it was written.

Then, a couple of days ago, I received a report from Under Our Skin Blog about the long awaited review of the IDSA guidelines and the following quote was written under the lead picture:

Gary Wormser, MD, lead author of the IDSA guidelines, attributes many chronic Lyme symptoms to “the aches and pains of daily living.”

The aches and pains of daily living…

The aches and pains of daily living…

What in the world was this expert doctor talking about?

After reviewing 3,000 pages of peer-reviewed evidence challenging advice in its 2006 Lyme disease medical guidelines, eight Infectious Diseases Society of America (IDSA) panelists voted to keep the 45-page document “as is.”

How could such a controversial issue – internationally not just nationally – how could there not be one single dissenting vote??

(I wrote on the event in the blog post “http://www.lymediseaseresource.com/wordpress/idsa-creates-black-thursday-for-those-suffering-with-chronic-lyme-disease.”)

Please don’t misunderstand my comments as condoning violence or the threat of violence in any way.  But I frequently wonder what kind of event and/or personal tragedy will be required to get through to these powerful “experts” in their field.

Clearly, any person whether a teacher, physicist, oncologist, politician…anyone who could describe even a fraction of Lyme sufferers as simply living with the aches and pains of daily living needs further information, evaluation, first hand information…

If the body of medical science that has set itself up as a protector of patients rights in a field where our nation is facing perhaps the largest medical crisis in our history, and these doctors are scrambling for cover OR jumping on the podium and making so much noise that they hope people will believe them.

They point to studies that are not remotely sufficient, and minimize symptoms that don’t fit into their definition of “aches and pains of daily living.

I try not to rant and rave in my blog posts, but when I read those comments, i just could not sit on the sidelines and watch as many suffering people are devastated by such callous remarks.

For those of us who have been badly ill and/or disabled, disregard such ignorance and remember, we will get through this together.

Similar Posts:

• Scientific Evidence for Chronic Lyme Disease
• IDSA Lyme Treatment Guidelines: Politics As Usual
• ABC Reports on Misdiagnosis Regarding Lyme Disease
• Who Can We Trust?
• IDSA Creates Black Thursday For Those Suffering With Chronic Lyme Disease
• How Many People Have Chronic Lyme Disease?
• Myth Of The Bulls Eye Rash
• WARNING! It’s That Time of Year…
• Lyme Disease Listed As A Threat From Terrorists.
• Letter Regarding Appointment of Committee to Review IDSA Lyme Treatment Guidelines

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Posted on May 5th, 2010 under Chronic Lyme Disease, Coping with Lyme Disease, Discussion, Lyme News, Personal stories • Tags: Chronic Lyme disease, Undr Our Skin, Violence. •  Email This Post • RSS 2.0 feed • Leave a response, or trackback