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Lyme disease continued its steep rise in 2008, as the CDC posted a final tally of 35,198 reported cases, a 28% increase over the previous year. Looking at a two-year timeframe, cases increased by 77% from 2006 to 2008. According to CDC epidemiologists, these reported cases are underestimated 6- to 12-fold, due to inherent flaws in its passive reporting system. So, the actual number of new Lyme cases in 2008 may total upwards of 420,000. And many Lyme-literate physicians believe that the real numbers may be even higher.
In 2008 the CDC changed its Lyme reporting process to include both ``confirmed'' and ``probable'' cases in the total, and during this transition year, it's difficult to tell how this affected the accuracy of the case count. Fifteen states failed to report any ``probable'' cases.
Here are the states with the most reported Lyme cases in 2008:
This change in the Lyme disease surveillance process was initiated in 2008 to reduce the burden of mandatory CDC Lyme reporting on resource-strapped state and local health departments. But it did nothing to address the fundamental flaws in the Lyme surveillance criteria--it is still based on an inaccurate blood test and an outdated list of Lyme disease symptoms. [1]
To compensate for the ambiguity caused by bad tests and diagnostic criteria, local health officials often must make time-consuming calls to treating physicians for clarification. 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 -The Lyme reporting process in New Jersey alone required 5 full-time employees to handle (The overworked New Jersey health department quantified the absurdity of the Lyme surveillance process in their report, ``Burden of Lyme Reporting.'')
To add insult to injury, the Lyme surveillance criteria, which were initially designed as analytical metrics for CDC epidemiologists to track the spread of the disease, are being used inappropriately for Lyme disease diagnosis. While the CDC officially says that this surveillance criteria should **not** be used for diagnosis, the organization is sending a mixed message to physicians and patients by officially endorsing the Infectious Diseases Society of America (IDSA) Lyme guidelines, which mandate that this overly stringent surveillance criteria be met before patients can be treated. And though the IDSA claims that these diagnostic guidelines are not mandatory, they have been used as legal hammers in challenging the medical licenses of both Dr. Charles Ray Jones and Dr. Joseph Jemsek, two prominent Lyme-literate physicians who diagnose based on symptoms, exposure, and a less rigid interpretation of the tests.
Meanwhile, as the number of Lyme sufferers continues to climb by double-digits the silence from both the CDC and mainstream medicine is deafening. If the CDC reported an increase of 77% for AIDS, wouldn't it be on the cover of every newspaper and medical journal in America? So what's going on with Lyme disease?
The problem is that most people and frontline physicians believe that Lyme disease is a trivial, over-diagnosed illness that can be cured with 2 weeks of antibiotics.
The reality is that untreated or undertreated Lyme disease can result in a serious neurological infection, similar to syphilis, for which we have no accurate tests and a poorly defined set of symptoms. Information and research on this disease has been controlled by a small group of academic researchers, operating under the legal protection of the IDSA, who have conflicts of interest in Lyme-related vaccines, test kits, and the very definition of the disease. (For more information on these conflicts, watch this clip from UNDER OUR SKIN, review the ruling from the Attorney General of Connecticut, and read the book, ``Cure Unknown.'')
Much to the frustration of Lyme patient advocacy groups, the CDC has allied itself to the narrow IDSA view of Lyme disease, and has repeatedly refused to incorporate new diagnosis and treatment information onto its website.
Recently, new research has shown that the CDC-endorsed blood tests, which are based on a single Lyme strain from Shelter Island, NY, may not be detecting all the bacterial strains of the disease.
In the recent IDSA Lyme evidence hearings, initiated by the Attorney General of Connecticut, David Volkman, Ph.D., M.D., Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, reiterated these evidence-based findings [3], saying: -Persistent Lyme is well documented in mice, dogs, and man -The current Lyme tests are unreliable -The CDC surveillance case definition for Lyme is being misapplied
In light of this new evidence, it's clear that the latest revision to the CDC Lyme surveillance criteria is akin to putting a butterfly band-aid on a cut to the femoral artery. The new regime at the CDC needs to look more accurate ways of tracking Lyme disease, such as the automated lab reporting system that they've funded for tracking Lyme disease in dogs, through Banfield pet clinics.
And with chronic disease accounting for 80% of our nation's health care costs, our public health system needs to know how many of our citizens are suffering from both the acute and chronic forms of Lyme disease.
The tragedy of this broken reporting system is that it is ruining lives. Physicians make clinical decisions based on the CDC case numbers, and if they think that Lyme is rare in their area, they may not consider it as a differential diagnosis. 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. (We hope that our documentary, UNDER OUR SKIN, has helped to raise Lyme disease awareness, and in turn, the accuracy of the Lyme case count.)
It's time for the CDC to stop downplaying the magnitude of the Lyme epidemic and to put the truth back into the testing and the reporting system.
Below: Though the CDC shows a majority of cases in the Northeastern states, there is evidence that the CDC-endorsed Lyme tests may be missing the new Lyme strains emerging in the South and West. Click here to view/download this map.
[1] A review by Stricker and Johnson (2007) of North American case-control studies of commercial two-tier Lyme testing reached the following conclusion: ``The two tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) has a high specificity (99%) and yields few false positives. But the tests have a uniformly miserable sensitivity (56%)--they miss 88 of every 200 patients with Lyme disease.'' An updated analysis including more recent studies found that the sensitivity of the two-tier test system was even worse (46%). This sensitivity is far below the 95% cutoff required for an accurate diagnostic test, and much worse than the 99.5% sensitivity of commercial HIV testing.
[2] Steven Phillips, MD. Evidence of Persistence in Chronic Lyme Disease. IDSA Guidelines Review Hearing. 7/30/09.
[3] David Volkman, PhD, MD. Evidence-based Observations in Lyme disease. IDSA Guidelines Review Hearing. 7/30/09.