Since UNDER OUR SKIN has been released, Lyme disease cases have continued to rise, with the U.S. Centers for Disease Control (CDC) posting a final tally of 38,468 reported cases in 2009 [1], a 9% increase over the previous year. Over the past five years, Lyme cases increased by 94%, almost doubling from 2004 to 2009.
According to CDC epidemiologists, these reported cases are underestimated 6- to 12-fold in endemic regions due to inherent flaws in its passive reporting system. [2] Consequently, the actual number of new Lyme cases in 2009 could be as high as 461,616.
The large gap between reported and actual cases is caused by a number of factors, including:
1. Inaccurate Lyme tests [3]
2. Failure of physicians to report cases
3. A labor-intensive process that requires local health officials to contact individual physicians to confirm details of many of the case reports [4]
4. Cases rejected because they don’t fit the conservative surveillance definition of Lyme disease
The Lyme disease surveillance process was changed in 2008, with the goal of reducing the burden of the CDC/CTSE complex mandatory Lyme reporting process on resource-strapped state and local health departments. [4] Unfortunately, the resulting revision, which was held behind closed doors with no provision for public comment, did nothing to address the fundamental flaws in the surveillance criteria—it is still based on an inaccurate blood test, an outdated list of Lyme disease symptoms, and a cumbersome reporting process that places an undue burden on state and local health departments.
Instead, the CDC/CTSE revision added more complexity and less transparency to the reporting system, creating three categories for Lyme cases – confirmed, probable and suspected.
The problem with the “suspected” category of Lyme cases is that it allows state health workers who don’t have time to follow up on valid cases, with positive test results or the classic Lyme bulls eye rash, to place them in a list that the CDC never publishes. In addition, the CDC only reports the confirmed cases to the media, never mentioning the probable and suspected cases, or the fact that CDC epidemiologists say that the actual case count could be ten times higher than the reported cases.
The tragedy of this new process is that physicians make diagnostic decisions based on the CDC case numbers, and when cases in their states are underestimated, more Lyme patients will be misdiagnosed. Congress allocates research funding based on the CDC case numbers, too, and by underestimating these numbers by a factor of ten, grants will go to other diseases.
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[1] CDC. Reported Lyme disease cases by state, 1995-2009. Reported cases in this chart include both “confirmed” and “probable” cases for 2008 and 2009.
http://www.cdc.gov/ncidod/dvbid/lyme/ld_rptdLymeCasesbyState.htm
2009 reported Lyme cases = 29,959 confirmed + 8509 probable = 38,468
2008 reported Lyme cases = 28,921 confirmed + 6277 probable = 35,198
2009 annual increase = (38,468 – 35,198)/35,198 = 9.3%
[2] CDC. Cases are “under-reported by 6- to 12-fold.” http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm
[3] Coulter, P, et. al. 2005. Two-Year Evalution of Borrelia burgdoferi Culture and Supplemental Test for Definitive Diagnosis of Lyme Disease, Clin. J. Clin. Microbiol. 41: 5080-5084. “…no single test is optimal for Lyme disease diagnosis”
[4] CDC. Burden of Lyme Reporting. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5702a4.htm
In New Jersey, for example, the health department found that each Lyme case took health officials an average of 2 months to close; 24% of Lyme cases were never closed or counted; and the Lyme reporting process in New Jersey alone required 5 full-time employees to handle.
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It is alarming that
It is alarming that administrative lapses causes the number of cases to be under reported, as this might cause people to have a false impression that the situation is under control or not bad enough to justify more attention or resources, thinking that all the hype is just pure smoke.
I was constantly hunting for
I was constantly hunting for reports on the internet in which can help me. Huge appreciate it to the useful information. baseball umpire videos
Watching the Oscar’s last
Watching the Oscar’s last night made me think of Under Our Skin, the award for best documentary. I can’t tell you how sad it made me at that moment to not have your movie in there with the finals. I just kept thinking there needs to be a part II and that maybe next year or the year after the Academy will appreciate what we are trying to show the world. I think most, if not all Lyme patients, have as much desire to protect our rights as patients as we do to protect those who are still undiagnosed, misdiagnosed or who will be diagnosed in the future. We know the pain that is to come for so many until the treatment of Lyme disease changes. We’re trying to throw out the lifejackets as fast as we can. It’s so frustrating to know what you know and feel like you have no voice. Thank you Andy for creating Under Our Skin. Please don’t give up on us. Your efforts have been the silver lining for me many times.
Lyme deaths are informally
Lyme deaths are informally tracked here:
http://www.lymememorial.org/
and here:
https://sites.google.com/site/marylandlyme/system/app/pages/subPages?path=/memorial-page
The CDC recently did a quick-and-dirty review of death certificates listing Lyme as “cause of the death,” and concluded Lyme is rarely fatal.
Dr. Bransfield, president of an organization of Lyme specialists, criticized the methodology of this study, saying:
“There was no attempt to identify deaths from Lyme disease that may have been identified as a death from some other illness,” said Bransfield, whose controversial group contends that chronic Lyme disease is a growing problem, and that many people with the infection need longer courses of antibiotics to help prevent it.
“You can’t generalize from this to say that deaths from Lyme disease are rare,” he said.
Exactly how many deaths might be attributable to Lyme disease is unclear, according to Bransfield. But he argued that the number could be “significant,” if the question were looked at in a broader way.
Bransfield, a psychiatrist, said that suicide may be the major way that Lyme disease can prove fatal. He acknowledged, though, that this belief is based on anecdotal evidence, and there is a lack of hard statistics on Lyme disease and suicide risk.
Bransfield also noted that some researchers have speculated that the infection can ultimately contribute to cases of dementia, multiple sclerosis and amyotrophic lateral sclerosis.”
http://health.asiaone.com/Health/News/Story/A1Story20110107-256909.html
Based on our research, death certificates wouldn’t be a very reliable data source in assessing Lyme disease mortality. As with AIDS patients, most of these sufferers die of the long-term systemic affects of the disease, which ravage the immune system, not the organism itself.
Lyme deaths are also undercounted because of lack of awareness in the medical community of the late stage symptoms and the differences in symptoms of the more virulent strains of Borrelia burgdorferi. Hopefully new research coming out of Stony Brook and Stanford will shed some light on that.
http://underourskin.com/blog/?p=127
IS there any effort to track
IS there any effort to track lymes on death reports?
I expect, from my near experience, that there are a number of victims that take their life.
Also, lymphoma is quite common after lymes. I recently sold my wreath making equipment and I explained to the young lady that I could no longer use it due to lyme. The lady said “my Grandma had lymes” I asked how is she doing now? She replied”she died but it was not from lymes but from cancer” I said let me guess lymphoma cancer. She had no idea there likely is a connection.
As a Dutch medical research
As a Dutch medical research journalist I have been writing about the Lyme borreliosis syndrome (LBS) since 2004.
I once had a psychiatrist (Lyme patient!) biting my head off when on a conference I stated that the Borrelia spirochete has been identified in every body fluid, including semen. I was personally told this by the grand old ladies of Lyme science: Lida Mattman and Joanne Whitaker. They both died in their 80s in 2008.
LBS is a biowar entity, mentioned as such on the CDC website till 2005.
It is one bioweapon that is not going to go away any time soon.
So, when are doctors going to
So, when are doctors going to be open about the fact that Lyme is a cousin to Syphilis and most likely an STD?
The CDC has now released a
The CDC has now released a new, more restrictive 2011 Surveillance Case Definition for reporting Lyme Disease. For example: for reporting the first 2 cases in a county (which makes that county “endemic”), under Lab Criteria for Diagnosis the case definition now states that a positive IgM is sufficient only when ≤30 days from symptom onset. Many patients report they have + IgM results at various times during the illness.
http://www.cdc.gov/ncphi/disss/nndss/print/lyme_disease_current.htm
It doesn’t matter: we were told they advise some states not to use their own “standardized” reporting practices, anyway. We have numerous counties across the Southeast with 2 or more cases on record that fit the reporting definition, so these counties should have been declared endemic long ago, but never were. Instead, they declared these entire STATES NONendemic and never applied or used the CDC Reporting criteria at all. So, they never started counting rashes, or EMs, in those
counties, as the Case Definition states.
Additionally, even though a few states in the South actually began to finally count by county when the 2008 CDC case definition was released, both North Carolina and Georgia state officials refuse to deem a county endemic for Lyme if an infected tick vector is found within that county (despite the CDC Case Definition that says they’re supposed to).
When reporting practices vary like this from state to state, and what counts as a case in one state, doesn’t in another, then statistics cannot be compared. Read our comments here to better understand:
http://www2.journalnow.com/news/2010/dec/29/wsmet01-lyme-disease-uptick-in-virginia-hasnt-reac-ar-651518/
Controlled emergence, anyone?