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TOUCHED BY LYME: CDC Ups Cases to 329,000; Some Docs Push Back

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Reprinted from LymeDisease.org with the kind permission of Dorothy Kupcha Leland

TOUCHED BY LYME: CDC ups cases to 329,000; some docs push back

The Centers for Disease Control and Prevention (CDC) now says there are about 329,000 cases of Lyme disease in the US every year. That’s up from the estimate of 300,000 that they gave in 2013. (The number of officially reported cases, those meeting the CDC’s strict surveillance guidelines, still hovers around 30,000.)

Yet, even this new bigger number is based on insurance claims–which only show up when people have been diagnosed with Lyme disease. We all know how hard it is to get diagnosed with Lyme. So how many people actually have it? Much higher than 329,000, I dare say.

“We’ve always had the understanding that cases are under-reported, so we always knew that surveillance doesn’t capture every case,” said one of the researchers. “This study helps capture and quantify this fact.” Read CBS News coverage here. Yet, according to Minnesota Public Radio, some infectious disease docs are pushing back about the new number:

Some Minnesota infectious disease experts say physicians and patients are often too quick to label a problem as Lyme disease, and that if that diagnosis turns out to be wrong, the insurance claims may not be corrected to reflect that.

Most Lyme disease cases are diagnosed based merely on a physician’s observations, said Dr. Gary Kravitz with AllinaHealth.

That may produce an insurance claim for Lyme disease, but unless the diagnosis is eventually confirmed with a blood test, the problem could well be something else, he added. (Read more here.)

Physicians are too quick to label a problem Lyme disease? What universe are those guys inhabiting? (Oh yeah, the one where Lyme is “hard to catch and easy to cure.” The one where joint pain, fatigue, and gastrointestinal distress are “all in your head.”)

In my ten years of communicating with Lyme patients, not ONE of them complained that their doctor was “too quick” to identify their problem as Lyme disease. And in a survey by LymeDisease.org, more than half of patients had to see seven or more physicians before finally being diagnosed with Lyme disease. Over a third saw 10 or more!

So the CDC is finally recognizing that 329,000 people get diagnosed with Lyme every year.  Maybe that’s a baby step in the right direction. But what about the suffering thousands who don’t get diagnosed and continue to be kicked to the curb by the medical establishment? When will our health officials step up and give them the help they deserve?

Source: TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide, to be published this month. Contact her at dleland@lymedisease.org. On Twitter, she’s @dorothyleland.

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