Dubious medicine a product of dubious journalism

The Chicago Tribune published an article today titled 'Chronic Lyme disease' diagnosis gains traction despite lack of evidence.    In the article, the writers, who can hardly be called journalists, tow the IDSA party line stating that Lyme disease, in its most severe forms, is easily treatable with 10-28 days of antibiotics.  They question the Chronic Lyme diagnosis as essentially a web-phenomenon that is making a handful of Lyme-literate physicians wealthy.

Lyme docs (or LLMDs) often do not take insurance.  They can't.  Their medical licenses have been revoked for prescribing medicine outside the purview of the very narrow antibiotic treatment guidelines.  My doctor, as well as a number of the LLMDs I've encountered in my discerning research, have been touched personally by late stage Lyme.  They aren't doing this to get rich.  They are trying to treat patients who are otherwise cast aside.  If the comments on the Tribune are any indication, there are a number of people who think a trip to the psychiatrist will fix us all right up.  I've also read non-Lyme friendly doctors question how much the placebo effect plays into the recovery of Lyme patients.  Of course, the placebo effect explains why some antibiotics have worked for me and others haven't.  And why the ones I REALLY expected to work, didn't.  And yet because of antibiotics I am, at the least, functionally sick (or chronically well). 

The Tribune then went on to publish another piece in their journal explaining their reasoning behind publishing the original article (I guess they didn't like the Lyme community descending upon them like... ticks).  They reiterate their concern that the overuse of antibiotics by Lyme patients is a public health nightmare and puts everyone at risk.  That argument makes me so livid.  Of course we shouldn't minimize the reality of antibiotic resistance.  But if we can treat zits with long-term antibiotics, I think it's at least worth a shot to try to treat chronic illness the same way.  As LymeMD once said, does it really matter in the end what the offending organism is if the treatment is effective?  And by offending organism, I don't mean a psychosomatic disorder requiring psychiatric help.  There ARE some crazy people who are sick for attention.  But we can't all be crazy. 

Following is my response to the second Tribune article, which I am waiting to be approved:

"Considering your concern for public health and the use of antibiotics, I'm assuming you will be doing a follow up piece on the treatment of acne using long-term antibiotics.  If a possible life-threatening disease is not worth the antibiotic risk, I'm assuming you believe that zits aren't either.

And as numerous commenters pointed out, the use of antibiotics in the meat supply is likely a far greater contributor to antibiotic resistance than use in Late-Stage Lyme patients. 

I think the biggest concern with your article is the obvious oversight in your ability to actually read ANY of the science.  A recent study showed the persistence of Lyme bacteria in "adequately" treated animals.  There are a number of respected scientists examining this issue, and watching any of the recent conferences would, I think, cause you to consider that perhaps this is more than just "modern dubious medicine."

The one thing your article did point out is that as long as it's presumed there is a cure, there is no need for us to continue researching.  Unfortunately, treatment failures do exist, and it is my hope that research will continue so that we can eradicate the multiple chronic infections that have destroyed so many lives."

Let me be very clear: I believe in science.  There are plenty of Lyme conspiracy theories, and I do not believe they help further the sanity of any of those fighting this battle.  I believe in controlled, randomized studies.  I believe in clinical trials (my dad's life was saved by one, even though it did not get FDA approval in the end).  But I also believe that we don't know everything that we need to know, and often clinical judgment is required.  So when I'm looking for a doctor to treat Lyme, a disease that little is known about, you bet your ass I'm going to pay the extra money to go see a doctor who treats Lyme often (as opposed to once in ten years).

I wish that we were ten years down the road in research.  I really do believe there is some incredible research being done at those dubious schools like Columbia!  I thought some great points were raised at the Institute of Medicine's summit on Lyme this year, even if dissenting viewpoints were brought in begrudgingly.

The Tribune did nothing for Lyme patients today.  In fact, they made it more difficult to get recognition by other doctors, doctors I don't go see because of the pervasive attitude like those expressed in today's article.

And the point being made at the end of the article by the patient who was essentially vilified was that maybe if the doctors who turn their head to this epidemic were to fall sick to Chronic Lyme, change, real change, would be made in fighting a disease that so many of us want to just put behind us.