Rant about the Media, Celebrities, and Lyme Disease

Tick Bite Pic

Dr. Oz recently did a piece on Lyme Disease and Avril Lavigne’s experience with the disease. And right off the bat, proper diet and exercise get credited for turning her life around. The article in People Magazine does a slightly better job at sharing the difficulties she faced, but even in that article, it implies few weeks of antibiotics will cure the disease.

Um. No.

The problem with implying diet and exercise is the way to turn your life around is that it puts the person suffering in a position of blame. “Well, if you just eat right and exercise, you’ll feel better.” That’s like telling a person with bacterial pneumonia to “walk it off.” Good food and 30 minutes on the treadmill every day won’t cure a bacterial infection like pneumonia, nor will it kill the bacteria that causes Lyme, or any other bacterial tick borne infection.

I can almost guarantee that any person who has been diagnosed with Lyme Disease already attempted to turn things around with diet and exercise. We went to doctors who told us the same, and while we continued to try, we still weren’t getting better. Those of us still engaged in the battle to get our lives back continue to eat very healthy, because we know all too well how diet makes our symptoms worse. That is, for those of us lucky enough to keep food down.

When is Lyme Disease going to get the research attention and funding and coverage by insurance companies it needs? How many more celebrities have to “come out” with the disease before the rest of us get real treatment options? Options that have been backed by studies? Options that go beyond “take this antidepressant, cut out the junk food, and hit the gym?” When will the media start telling the real story behind those who suffer with Lyme as a chronic condition, and report that the CDC’s guidelines of a few weeks of doxycycline will make it all go away? When will Lyme patients get to take long term antibiotics without having to fight with our insurance companies for that treatment? Why is it that long term antibiotic use is acceptable for acne patients, but not for those who suffer with an illness that can debilitate them?

The controversy over long term antibiotic use in Lyme patients is that part that makes me most angry. I get that long term antibiotic use has long term effects, both for the patient and for the community as bacteria grow resistant. I really do get it. But what I don’t get is how the medical community can decide an acne patient is worth taking those risks for, or a patient with recurrent UTIs, but a patient like me gets all kinds of flack.

This rant can go on forever if I let it, going off on tangents about insurance companies and how medicine is no longer run by medical professionals but CEOs whose biggest interest is their bottom line, so I’ll stop now.

But that rant is coming. It’s inevitable…