(I apologize for info overload - but I have it so I figured I might as well share it.)
LYME IS SERIOUSLY UNDERREPORTED
Unfortunately, the entire US population has been duped into thinking "Lyme is only in X states" because of very outdated information that is STILL being propagated by CDC and IDSA and NIH, and therefore being repeated by MDs when they tell patients and refuse to even test them. And it's also being included in disinformation articles and other propaganda issued by the CDC and IDSA.
Lyme exists in 50% of the counties in the country.
PeteZa is absolutely right! Lyme is carried by animals and birds and people - who don't necessarily spend their entire lives within the imaginary borderlines of a particular state
. The migration patterns of, say, a Carolina wren is the entire southeastern quarter of the country. I don't think they are stopping at any state border. 75% of over 50 bird species in CA tested positive for Lyme.
MOST Lyme cases are not reported--not because they don't qualify as actual Lyme cases, but because they don't and weren't intended to qualify for the CDC's reporting criteria.
The key thing to understand about
the Lyme epidemic is how misleading the CDC's reporting information is. And key in understanding this, is to understand what the CDC is actually reporting, why, and how it misses most Lyme cases.
CDC SURVEILLANCE CASE DEFINITION
The CDC reports Lyme cases through its surveillance case definition
protocol, which is designed to track trends in diseases throughout the country. Since they have no other means for reporting new cases of Lyme every year, this surveillance process tries to cover that as well - despite the fact that it is anything but accurate or efficient for capturing Lyme diagnoses but it's what we got.
This inaccurate process for actually recording new Lyme cases popping up is reflected in what the CDC and IDSA cite in their appx. "329,000 new cases" per year type of publicity announcements like they did back in 2013.
But there are several serious issues with using the surveillance process to accurately reflect how many Lyme cases there really are:
- This surveillance reporting criteria is strict for the purposes of surveillance and based on "uniformity, simplicity and timeliness." Unfortunately, LD is not a simple disease and the CDC website itself acknowledges that "Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement."www.cdc.gov/lyme/stats/survfaq.html
- According to Dr. David Volkman, Ph.D., M.D. (Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, Board certified in Immunology, Diagnostic Laboratory Immunology and Internal Medicine, and Board Eligible in Infectious Diseases), who was a member of the original Committee (along with IDSA’s Wormser) to Develop a Surveillance Case Definition for Lyme Disease and helped write the surveillance definition. Volkman states that “the CDC explicitly cautioned against using this restrictive case definition or clinical diagnosis and reiterated this proscription with every rei-issuing of it’s ‘Surveillance Definition.’ It has been a source of frustration and confusion that some in the medical community wrongly insist that a LD patient must satisfy CDC criteria.”georgialymedisease.org/yahoo_site_admin/assets/docs/ws_-Volkman_1_comments_IDSA_guidelines.100215315.pdf
- Without other mechanisms of measurement, the medical community follows the CDC’s reporting, which the CDC acknowledges captures only 10% of actual cases as stated (Paul Meade, CDC epidemiologist.) They even say that they are not interested in counting ALL the cases, but in chasing new outbreaks and locating hotspots. (NJ) Herald News - Lyme: Battles with Illness, Emotions, Insurance Companies Jessica Adler 5/4/04
CDC TESTING METHODOLOGIES SERIOUSLY FLAWED
ETA this paragraph:
In 2008 appx. 3.4 million lyme tests were administered (clearly, that number has gone up). www.medscape.com/viewarticle/826315
Not only is their reporting protocol a mess, but the tests CDC requires also miss an estimated 50% of the cases that would be reported to the CDC if they were tested accurately. Given the numbers of tests administered, the rate of inaccurate results, and how many the CDC reports, it's easy to understand how Lyme is so underreported.
The CDC requires a two-tiered testing process using serology testing (in other words, tests that look for antibodies to microbes, not the microbes themselves). This works for most disease manifestations EXCEPT for Lyme. /www.lymedisease.org/lymepolicywonk-the-cdc-the-fda-and-lyme-disease-lab-tests-two-tiered-tests-igenex-the-c6-and-the-new-culture-test-2/
The Borrelia microbe (Lyme) can suppress the immune system, which can lead to a poor immune response and not enough antibodies for the tests to detect:journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976
Also, the Lyme microbe generally leaves the blood stream, where antibodies are found.
CDC's testing methodology is unnecessarily restrictive:
- The CDC requires a minimum number of reaction to specific bands in order to be considered a "positive" test--but these are surveillance data requirements, not definitive requirements for a positive Lyme disease diagnosis. So if a person doesn't react to the minimum number of bands on the list, they're told they don't have Lyme even if the band they DID react to was a Lyme specific band. In other words, the tests indicate "Lyme-specific" reactions that can't be caused by any other microbe. Why would you need more than one of those reactions to trigger a positive result? That's like being "sorta pregnant".
- There are also two Lyme-specific bands that were removed from the qualifying bands for a positive result because they were used in the development of two Lyme vaccines back in the 80s/90s. I've yet to discover any reasonable explanation for removing these bands, rather than simply asking a patient if they had received the vaccination. So, people DO react to one or both of these two bands (which were specific enough for Lyme to be used as the basis for vaccinations!!) but are told they don't have a positive test result.
Interpretation of results is unnecessarily confusing:
- The CDC cautions that the tests, alone, should not be the sole source of diagnosis and that MDs should use a clinical diagnosis to determine infection. This statement is on their website (although VERY buried) and some states have required labs to post it on the lab results. Yet MOST MDs are still clueless what this means or how to clinically diagnose, and still tell people they don't have Lyme, when they do. And of course don't report it. And if they did, the CDC wouldn't count it because unless it is "CDC positive", the case doesn't qualify according to their surveillance criteria.
And the crazy thing is ---all of this applies to people who are lucky enough to get tested in the first place. Most people aren't. Testing happens ONLY if:
- the MDs know enough about
Lyme and its symptoms to determine to test a patient
- knows when to test
- knows how to avoid issues that can exacerbate the inaccuracies of the tests that already exist
- knows which tests are more reliable
- knows how to use the tests accurately
- and knows how to interpret test results accurately.
Most of the time, this doesn't happen, people don't go to a knowledgeable or capable MD or don't even know to suspect Lyme because most of the information about
Lyme, where you might contract it, who can contract it, how it's transmissible, and what early signs to look for---is mostly inaccurate or outdated information!
Here are more reasons the tests are often inaccurate: whatislyme.com/22-reasons-why-your-lyme-test-may-be-wrong/
INACCURATE, CUMBERSOME, UNRELIABLE REPORTING PROCESS
As part of the CDC's reporting process, each state has its own process for reporting to the CDC and likely, each county in the state comes up with their own protocol of reporting to the state - all part of the same reporting process.
State health departments forward or “report” to the CDC only cases that fit the national surveillance criteria. Subsequently many reports of clinically-diagnosed Lyme never reach the CDC (and the tough cases to diagnose that MDs are also treating are never reported). Public officials and physicians report that often, physicians, who've spent time and money documenting clinically-diagnosed cases, eventually grow discouraged. Some stop reporting to the health departments for these reasons.
Generally, the process requires the patient's MD and/or labs to report CDC POSITIVE results to the County/State Health Dept., (despite the CDC's warnings otherwise, the reporting uses the CDC's two-tiered tests and test interpretation criteria designed specifically for surveillance purposes, not for diagnostics).
In turn, the County or State Dept. of Health is required to follow up and often this requires a 40 minute phone call w/ the MD to verify the particulars of the case. Because the process can be cumbersome and time-consuming, MDs and DoH's don't do it or do it incompletely and that is probably the biggest reason why most Lyme cases are not reported, and therefore the CDC's statistics are so bad.
In some states the County is to follow up with the patient to verify information, according to its protocol for reporting infectious diseases (although in many states, the County follows up w/ the MD, not the patient but this often doesn't happen, patients/MDs can't be reached or are unresponsive, information can't be verified. Most of the time, if the info is incomplete they simply won't forward the case as a "reported case of Lyme" on to the State, CDC, etc... so it gets missed.
- To identify TBD cases diagnosed in 2009, but not reported to the Minnesota Department of Health (MDH), diagnostic and procedural billing codes suggestive of tick-borne diseases were used to select medical charts for retrospective review in medical facilities serving residents of a highly endemic county in Minnesota. Of 444 illness events, 352 (79%) were not reported. Of these, 102 (29%) met confirmed or probable surveillance case criteria, including 91 (26%) confirmed LD cases with physician-diagnosed erythema migrans (EM). For each confirmed and probable LD, probable anaplasmosis and confirmed babesiosis case reported to MDH in 2009, 2.8, 1.3, 1.2 and 1.0 cases were likely diagnosed, respectively. These revised estimates provide a more accurate assessment and better understanding of the burden of these diseases in a highly endemic county.Underreporting of Lyme and Other Tick-Borne Diseases in Residents of a High-Incidence County, Minnesota, 2009E. K. Schiffman1, C. McLaughlin, J. A. E. Ray, M. M. Kemperman, A. F. Hinckley, H. G. Friedlander and D. F. Neitzel; Version of Record online: 8 JUL 2016doi.org/10.1111/zph.12291
- This study showed MDs were diagnosing 40 cases for each one counted by Georgia’s State Health Dept. (in other words, the total cases the state’s Health Dept. reports to CDC). Boltri et al. Patterns of Lyme disease diagnosis and treatment by family physicians in a southeastern state. J Community Health. 2002; 27(6): 395-402)www.ncbi.nlm.nih.gov/pubmed/12458782
- In California, a single lab reported serious inaccuracies in reporting. This particular lab had been challenged and aggressively investigated several times and always passes with flying colors. In addition, they are approved by CLIA and by the state of NY, which has the most stringent requirements. Later in my posts I’ll share why limiting “viable labs” is important to those trying to minimize the appearance of LD diagnoses and you’ll more clearly understand the motivation behind undercounting cases.)
· Reported by lab in 2005 (Sept - Dec) = 401; Reported by Cal. DHS to CDC = 27
· Reported by lab in 2006 (Jan-July 1) = 435; Reported by Cal. DHS to CDC = 21
- According to Catherine Brown, DVM State Epidemiologist at the Massachusetts Department of Public Health, 35% of cases reported to DPH went unconfirmed (and therefore unreported to CDC) due to lack of clinical information. While mandated, reporting is manual and extremely cumbersome in a paper network. The Health Dept. has to interview the physician for each patient, which takes 45 minutes. It’s unlikely that DPH from other states are much more effective and Lyme experts estimate there is significant underreporting across the board.
- The CDC barely even acknowledges that Lyme can be found in Texas and yet Texas A&M researchers found infection with B. burgdorferi (lyme) in 45% of the collected I. scapularis ticks. This is in Texas, a state with a population of 26.96 million people where there is reportedly “no lyme” and very, very few MDs who treat it./drive.google.com/file/d/0B01v7Nbw8KJxaDJ5WW5jejV4ZU0/edit?pli=1
VERY LITTLE PROGRESS
You'd think by the 21st Century they'd have made some progress on this front. CDC Mead's testimony during the Congressional Hearings from several years ago and the Institute of Medicine's Lyme workshop in 2010 had some "this is how we're going to do this better" promises about
better case quantification but here it is 2017 and what has changed?
Post Edited (Pirouette) : 7/17/2017 2:33:45 PM (GMT-6)