TOUCHED BY LYME: Only 55 Lyme cases in California? Really?
Fifty-five (55) is a remarkable number. Did you know it’s the sum of the numbers 1-10? 55 is the speed limit in some places. And it’s the international direct dial telephone code for Brazil.
Here’s something else about 55. According to California health officials, it’s how many new cases of Lyme disease the state saw in 2009. (When I learned this at today’s Lyme Disease Advisory Committee (LDAC) teleconference, I hit the mute button on my phone and started screaming. ARRRRRGHHHHH! I actually haven’t stopped. Can you hear it?)
More facts about the number 55: As a support group leader and Lyme activist, I myself probably talked to more than 55 new Lyme patients in 2009. The CaliforniaLyme Yahoo support group grew by a heck of a lot more than 55 members in 2009 (we have about 1100 members in all.) And I’d bet the bank that California’s handful of Lyme-literate MDs took on many more than 55 new patients in 2009.
So why the crummy statistic?
Here’s the short version: It’s hard to get properly tested for Lyme disease in California in the first place. Even patients who show up with a tick bite and a bulls-eye rash are often told by their doctors “no cause for concern, because there’s no Lyme around here.”
The relative few who get tested are typically given an ELISA (known to miss as many cases of Lyme as it finds.) Those who DO get a positive ELISA may then get a western blot test.
Now, get this. Because Lyme is a “lab reportable disease,” the lab, by law, must notify the public health department of the patient’s county of residence. County health officials are then supposed to follow up, passing along “true” cases of Lyme to state officials.
The state takes the cases reported by the counties, throws out any that don’t meet the CDC’s highly restrictive surveillance definition, and–voila—there’s your tally of California Lyme cases.
This scenario offers many possible points of system failure. Here’s one: if overworked and underpaid county employees just don’t quite make it that far down in their in-baskets, the process comes to a screeching halt. The “reportable” information falls into a black hole, never to be heard from again.
In 2007, one lab found 1137 positive Lyme tests for California residents, and duly reported the cases to their respective counties. But, by the time the reporting meat grinder finished churning, those 1137 had been whittled down to 107. That leaves more than a thousand people who were sick enough to prompt a doctor to test for Lyme—and tested POSITIVE, for Pete’s sake—that just disappeared from the official books.
Even though Lyme is by law “lab reportable,” the state does NOT collect information directly from the labs. The labs send it to the counties. Period. State officials keep no count of how many positive Lyme cases the labs have found.
I find this hard to believe. I mean, when the labs are emailing the results to the counties, why can’t they just c.c. it to the state at the same time? How hard would it be to keep a list of how many Californians test positive for Lyme?
After today’s meeting, I called the state health department to clarify that point. A spokeswoman confirmed that the state does not collect this information. If the counties drop the ball, that’s the end of it. Finito.
Isn’t that absurd?
Dorothy Kupcha Leland can be reached at dleland@lymedisease.org.
See her previous post about LDAC here.
I can't think of any good reason the state shouldn't have a database of lab positives on reportable diseases, whether the cases ultimately meet current CDC criteria or not. Besides the fact that California's state health dept. should have a vested interest in accurately monitoring any public health hazard, even if the CDC in that case isn't, the CDC criteria could very well change someday down the road, or that information become necessary for research or survey, and that data become relevant to them.
We have to do something about this. Any one of us can talk to almost 55 new people a year. Times how many of us? What is California's actual new yearly total? Easily in the 1000s. LDAC could form a subcommittee to investigate all what's going on. We all could have input in some organized way about the many reasons for a lower than actual count. Then present it somewhere for follow-up and redress.
That's insane!
I, too, was appalled at the number, and at the apparent lack of concern by some officials. Furthermore, I wonder how our state agency can count only 55, yet CDC annual report tallies 117 cases. Don't our state tallies feed the count to the federal tally? How, then, can they come up with a higher number?
Of course, all this sound and fury about dismissing thousands of cases each year only underscores the fact that these counts are intentionally excluding late stage cases and most early stage cases due to an unneccessarily restrictive case definition. We need an expanded case definition to get an accurate picture of Lyme disease in California.
I got the bullseye rash in Orange County, CA in the late 80's and the derm said he thought it was impetigo. I went through years of diagnoses like CFS and fibro — CA docs NEVER mentioned or even considered Lyme. An AZ doc just diagnosed me this year.
In our county, San Luis Obispo, they will only count the case as CDC positive if a bullsrash was present and confirmed by a doctor. No wonder we are having a hard time getting the TWO cases in a year required to be classified as "Lyme endemic." Is this true of other counties?
I think we should skip the idea of endemic and go ahead and accept lab positives, not CDC-positive for five bands, but positive for any bands specific to Lyme.
Then have more reporting for those who are symptomatic but not showing up positive in WB. I know that's a stretch, but it's how lots present, often not testing positive until after some treatment.
Unless one day, it's finally going to be possible to culture the organisms, which is what I recently heard the SpiroStat lab is working on.
Lisa, I too was never recognized here. A back East nurse recognized my case.
huh. On the California Department of public health website, there appears to be two separate reports that listthe number of reported cases that fit the surveillance criteria. Here is one: http://www.cdph.ca.gov/programs/vbds/Documents/VBDSAnnualReport09.pdf
Perplexingly, one report listed 55 reported cases during 2009 as Dorothy had heard. Yet another report, titled "Lyme Disease Summary Report 2001-2009" reported 109 reported (surveillance criteria) cases during 2009. Why the discrepancy?
Another real interesting thing is comparing the Idexx dog tick born disease map site, which listed the positive tests** from 2001-2009 to the human county data from the CDPH sites. These figures cannot be directly compared, as the human data are the very restrictive surveillance cases whereas the dog data might be positive serologic results regardless of disease status. but perhaps the dog data could be used as a rough gauge of the presence of borrelia in the county. (does anyone know if the idexx test detects only borrelia burgdorferi, vs. borrelia spp?)
Anyway, there are several counties that had a fair number of positive dog tests that are getting relatively few or no human reported cases. there could be different reasons for this and that could be a challenging and interesting piece of detective work to tease out!
thoughts?
If the bacteria sequester themselves in biofilms, in some cases, no culture will work.
same thing is happening in ga. too, i actually pulled a tick off of me from behind my ear in 2008 & every DR. i went to said lyme doesn`t exist in GA., oh really now, my husbands ex son inlaw had lyme in GA. over 25 years ago & had never been out of the state, now after 2 years one DR. finally listened to me the patient & i tested CDC positive & am now enduring late lyme which is a living he–,it has effected my brain & every part of my body & now i have almost ran out of $$$, if DRS. don`t listen they need to shut their doors, i have not saw much compassion until my DR. now, maybe they will feel the pain & insanity someday, praying for all lymies around the world…
Am hoping LDAC will create a subcommittee to look into what's happening with each of the counties in CA – who's reporting, who's not, who's following up, who's not, etc.
Am also wondering whether we could take more charge of the reporting situation.
First, I don't think endemic means anything. An infected tick can be anywhere.
Second, what about the idea of having patients report their results to their state organizations?
For example, it means that in CA, CALDA would start to get a list of all those who are sending in their test results.
And then we can tabulate them, not only the five-band positive cases, but also by a lesser number of infected bands specific to Lyme, since people are infected with Lyme with less than five bands showing up.
And report it.
Just an idea. I just think we need to discuss how we're going to better chart the reality of what we're dealing with, epidemicwise.
Even here in New England the doctors are not testing properly and close their eyes to Lyme..Just diagnosed Oct. 2010 for Lyme and Babesia after having symptoms for 10 years!