This blog began because I wrote commentary in response to last December's Chicago Tribune article, "Chronic Lyme: a dubious diagnosis". I was not pleased with how the topic of Lyme disease was discussed in that article because it focused on doctors' disciplinary records and self-reported charlatans working in alternative medicine - and did not focus on science and clinical microbiology.
The best of my efforts to deconstruct that article is here:
Now, several months later, there is an article in the Chicago Tribune by one of the same authors of the original "Chronic Lyme" article - this time on one specific doctor who has a number of lawsuits and charges on his record.
This was posted early this morning:
Well Trine, you've done it again.
My issue with Trine Tsouderos' writing is that it is always written in such a way that the content emphasizes the most controversial topics that could possibly be related to chronic Lyme disease without actually discussing chronic Lyme disease itself.
It's sensationalism, and it is about getting the audience's outrage in print. It's an open invitation for the general public (who is fed up with mainstream medicine and bad doctors, and often rightly so) and skeptics (who do not think Lyme disease can be a persistent infection) to comment on how horrible Lyme literate doctors must be in general if someone specializing in the treatment of chronic Lyme disease has a background such as Dr. Piccirillo's.
Tsouderos' article written last December also focused on two doctors with disciplinary actions on their records. Never once did Trine mention that there are many doctors - both ILADS and non-ILADS doctors - who treat Lyme disease patients with longer than standard courses of antibiotics and help people get their lives back. These doctors have many years of experience treating patients and do not have the kind of disciplinary record which is on display here.
I have a major issue with Tsouderos' previous and current writing on chronic Lyme disease because it does not mention this nor does it mention any of the science and research behind Lyme disease and persistent symptoms.
As an investigative reporter, she could be putting her skills to use and advance science education for the general public if she wrote about research which demonstrates that Borrelia burgdorferi spirochetes can persist after antibiotic treatment and pointed out that researchers are not 100% certain of their significance. They argue over it, just as the IDSA and ILADS argue over it. It would also be beneficial if she mentioned the IDSA's position on supporting an autoimmune response and the molecular mimicry hypothesis as the cause for post-treatment Lyme disease symptoms - but she has never even gotten this far to explain why any researchers support a non-infectious model for persisting symptoms.
Reporting on these aspects of post treatment Lyme disease or what has been called chronic Lyme disease is what fair and balanced reporting would entail. Instead, what we get is pure and unmasked sensationalism geared to getting the most rise out of the audience.
All Trine seems to do is repeatedly point out a litany of bad medical decisions or charges related to a handful of doctors - and in the case of December's Chicago Tribune article - at least for one of those doctors, the charges were dropped.
There is no mention of the Lyme disease patient community's position that doctors who treat Lyme disease with more than the IDSA Lyme disease panel's guidelines recommended amount and duration of antibiotics are subject to being reported by insurance companies solely for that purpose. Nor is there mention of what evidence there is to support the patient community's statements on these reports. Instead, there is no mention of this at all - whether Trine thinks these reports are genuine or not.
Now, with what follows, I am probably going to receive some hate mail because of what I am about to say, but so be it. (I will create a special tab, "Hate mail" at the top of this page just for that purpose. If anyone writes in support of what I say, you too will get your comments on a separate page, "Love letters", or something like that.)
But anyway, I have to call it as I see it:
I have issues with Dr. Piccirillo's decision.
If Dr. Piccirillo was inspired to become an LLMD because he himself contracted Lyme disease and suffered due to it, I admire his desire to help others who have suffered a similar fate. But at the same time, was he hoping that his record would go unnoticed and he could start anew?
Dr. Piccirillo, you realize that doesn't happen when you enter the deep end of the pool in the Lyme disease controversy, don't you? Everyone and everything is scrutinized. To go into one of the most controversial jobs with a number of marks already on one's record adds to the existing public misconceptions and generalizations that are held about LLMDs.
Your decision to make this career move affects patients and reflects on everyone working in the field. If you were in fact by your own admission not the best surgeon and your record reflects charges of incompetence - then was picking a potentially high profile, high demand job such as an LLMD the way to go?
I appreciate your stated desire to do better and your own acknowledgment that you weren't cut out to be a surgeon. I take that with sincerity and at face value. And I understand that it's not your fault that Tsouderos wrote about you this way - through no fault of your own, your story and your past has been dragged out before the public for all to see.
Unfortunately, your past is exactly what they wanted to put on display and what many people would want to know about if you were to become their own doctor. As someone who has the lives of other people in your hands, you are going to be held accountable for what you do and do not do. It follows you; that's how it is.
But to be quite pointed about it, had you been the best doctor in the world and helped many people and harmed none - would Tsouderos have written about your work? Probably not. In terms of Lyme disease reporting, so far Tsouderos is a one trick pony.
Everyone who has read this kind of article realizes that this isn't fair and this isn't balanced reporting. How do you change this situation?
If you want to see balance in the kind of press doctors have been getting, then the media has to provide more coverage for and emphasize doctors who are mainstream, take insurance or charge reasonable fees (e.g. Dr. Cathryn Harbor), are willing to treat patients longer term with antibiotics based on case studies and research, and monitor and care for patients diligently.
We need more experienced doctors to come forward and publish their case studies and conduct new research on longer term antibiotics and other treatments. We need to have the best doctors work on our problems from the beginning and give them more positive exposure, not less. Otherwise, the only kind of story people hear will be the syndicated one which is presented to them across the country in sound bites by Tsouderos and others.
As patients we have our own job to do: Those of us whose symptoms have improved from treatment should be informing people of the positive aspects of treatment and how it has improved our quality of life - and how it has helped many of us return to work and the active lives we had before getting bitten by ticks.
Emphasize the positive. Let people know how treatment has helped you and write and talk about the importance of more research and clinical trials on different treatments for post-treatment Lyme disease. Get the word out there and blog about it, and ask your doctor to work with others and publish research.
This controversy seems never ending and I want it to stop, but things won't change unless what we're doing changes.
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