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?
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
The CDC may report that 329K cases are being diagnosed, but I expect they will certainly counter with the argument of an epidemic to overdiagnose Lyme that Lyme really isn’t that severe or those numbers are really Lyme.
Took me a few years to get tested even after seeing a rheumatologist and personally requesting to be tested because of my work environment I was a prime candidate for the disease!
I am undiagnosed and desperately seeking help. Closed doors everywhere I turn.
This is unbearable. http://www.caringbridge.org/visit/slippingaway
dorothy, great article.
again, the DENIALISTS proclaiming our drs/patients are jumping the gun at conclusions….grrr!
i saw between 40-50+ drs. taking 35 yrs. of hell before i got my correct diagnosis in june 2004.
bettyg, iowa lyme activist
Overdiagnosing Lyme? Really? I had a Lyme specific band on my first test but didn’t get diagnosed because it wasn’t C DC positive. The first doctor I saw believed that Lyme tests are highly accurate. The second was more open minded about Lyme but still refused to diagnose because the second test was completely negative, even though an inflammatory marker common in Lyme was little high. In her opinion it wasn’t high enough, so no diagnoses, no Doxycycline, no tests for other TBIS. All I got was some RX NSAIDs. I wish I would have seen one of those doctors who clinically diagnose. I live in MN. Remind myself to put Dr. Kravitz on my Do Not See list.
Studies from respected sources such as Harvard Medical School have long estimated the incidence of Lyme in the US to be about 10X (ie approx. 300K) CDC’s historical claims of 30K per year. CDC has historically simply completely ignored these studies. In 2008 CDC estimated the number of UNreported cases of Lyme at 5K per year; this was not based on any data.
Then CDC undertook three studies on the numbers of unreported Lyme in recent years (in addition to the annually reported numbers of 30K). The numbers from the 3 studies were 1M, 270K, and 300K. CDC never publicized its study which found 1Million unreported cases per year and thus it does not get reported in the press. If one also considers that CDC’s Lyme definition is inaccurately cramped and its Lyme test is only approx. 48% sensitive (according to the peer-reviewed science), the annual incidence is certainly over 1M per year. This is an extremely serious public health problem that CDC (and IDSA) has long tired to obfuscate.
Thanks for all you do for us Dorothy!
This serves as a reminder that Lyme disease is as much a political issue as it is a medical issue. The unfortunate reality is that the only way to get the system fixed is to get the federal law passed that is now pending in the U.S. Senate. Attached is an appeal inviting people from all across the country to contact their U.S. Senators requesting their support for Senate bill S.1503, which provides help for the victims of Lyme and other Tick-borne diseases (TBD).
The House of Representatives recently passed their bill (H.R.6), and we now need to prevail upon our Senators to ensure that the Senate version of the bill includes provisions for Lyme and TBD.
Please join us in circulating this message far and wide. Our goal is to have this email cover the country, and ask colleagues, patients, advocates, physicians, families, and friends to SPEAK UP about the desperate need to find solutions to Lyme disease.
Each of our 100 U.S. Senators needs to be contacted and each needs to recognize the urgency of this issue in their state and in this country. Senators from across the U.S. should be able to say, “YES, I’ve heard about this issue from my constituents” not “I haven’t heard about this from my constituents, so it is not important to them.”
We have momentum with the House bill passing, and we have a short window of opportunity. PLEASE FORWARD THIS EMAIL TO YOUR FAMILIES, FRIENDS, AND COLLEAGUES AROUND THE COUNTRY. ASK THEM TO USE THIS LINK FOR MORE INFORMATION AND TO REQUEST THIS ATTENTION FROM THEIR SENATORS.
Let your voice be heard! Write to your senators today encouraging them to support S.1503 by clicking on this link:
https://www.votervoice.net/FEDLYME/campaigns/42114/respond
— Please circulate this widely. —-
Thank you,
Coalition for Federal Lyme Disease Legislation