Wednesday, December 8, 2010

Chicago Tribune Article and Response

By Ashley Van Tol, SpiroChicks Writer

Today I was quoted in the Chicago Tribune Story Chronic Lyme disease: A dubious diagnosis. The quote came from a post I posted here on SpiroChicks and on Lymenaide in April after the IDSA made their "decision" about the Lyme disease guidelines.

Here is what was quoted from the post IDSA vs. Lymies-
...Egging the IDSA building or somehow infecting the committee members with Lyme sounds great because we are pissed off. However, these are not realistic or appropriate actions.

We need to fight back by telling our story louder than theirs....
In the wake of this latest attack on the validity of our illness, that last line "We need to fight back by telling our story louder than theirs" is once again our best course of action.

Today's Tribune articles drags Lyme doctor's and patients through the mud. Here is an excerpt from the article. Read the entire article here-

...Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.

But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars.

Strong evidence isn't on their side. But in a golden age of dubious medicine, that doesn't matter.

These days, advocates can raise big money to "Unmask A Cure" for a disease that already has a cure, and doctors disciplined by medical boards are held up as heroes. Legislatures around the country are passing laws to prevent medical boards from disciplining doctors who treat what they consider chronic Lyme with therapies that clinical trials have shown are dangerous and don't work...

It is another kick in the face for Lyme patients and doctors. I said it back in April and I am saying it again today, we can turn this around in our favor. Tell your story. Show them that they don't know what they are talking about. Let's prove to them that they are wrong.

I spent a lot of time on the response I wrote to the article. I wanted to be sure that it was well thought out and clearly illustrated my side of the story. I urge you to do the same. Do not reply with anger and emotion. Plan your response and prove your point with it.

Here is the link to my response to today's article- My Lyme Disease is not the IDSA Lyme Disease.

I sent it to the reporters who wrote the Tribune article. I am working on a response for a letter to the editor. Please note that letters to the editor must be under 400 words, be signed and include contact information, writer's city and state

Here are the email addresses to send your replies to the Chicago Tribune-


Letters to the Editor -


Alix said...

Thanks Ashley for putting yourself out there on behalf of our community! I'm so grateful your quote was used and that you are able to so eloquently spell out our community's stance and issues.

This is the comment I tried to leave on the Trib's site, but their comment engine is not working. I'm from Chicago, but I have to say, their site is SO Midwest. Sorry Trib.

In 1991 I had a bull's eye rash under my hiking sock, but didn't know what it was. 18 years later, I tested positive for Lyme but not "CDC-positive." I was in denial I could have Lyme, but was so incapacitated, that I was willing to try the treatment. I couldn't tolerate pharmaceutical antibiotics, so I stopped after 2 weeks and went into further denial because I didn't like the treatment. NO ONE likes the treatment. When I began to get Bell's Palsy I knew that I needed to come out of denial and address the Lyme.

A few weeks after starting strong Chinese herb antibiotics, I got a bull's eye rash from the treatment. This "secondary bull's eye" is common when beginning treatment.

Two years into my program, I'm happy to report I'm getting better and better.

This is a long-term illness - Lyme loves less vascular spots like joints & the CNS so it makes it harder for abx to reach it; Lyme goes into dormant cyst forms that abx don't recognize; and it shields itself from abx with biofilms. This is why Lyme needs long term treatment. You can kill what's circulating, but not much else.

None of the 4 placebo controlled studies you mention test the years-long treatment that is healing patients. How can you quote those studies as representative of "the other side" when they don't reflect the treatment we get?

Cam Brown said...

I became aware of the Chicago Tribune article when I received this response with my SpiroChicks news feed. I am horrified that what was published past muster with the paper's editors.

I publish a magazine for physicians in Jacksonville, Floria. (MD News) In my premier issue in 2009, I ran a thoughful essay by Pamela Weintraub on the controversial issues with the IDSA guidelines. Needless to say, I was a bit nervous as to what the response would be from the medical community. Imagine my surprise when word got back to me that those of influence thought the medical writing was commendable.

While all physicians may not agree with everything we the Lyme community says - yes my children and I are part of it - they do respect thorough medical research.

What the Chicago Tribune presented as medical fact was nothing more than tabloid journalism. While it will do little to change the minds one way or the other of the medical community that matters, it's our families, friends and co-workers who we all know will read something like that and find cause to dismiss us even more.

One astute commenter cautioned the reporters not to get chronic Lyme because they would never find a physician to treat them.

Let's keep up the good fight.

Alix said...

Thanks Cam, for stopping by and sharing that there is hope the science will someday win. We sure hope so. For now, though, it's ON, Trib. I've got my fight on.