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.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.
We need to fight back by telling our story louder than theirs....
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- http://bit.ly/fE9H2k
...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 - email@example.com