I knew the CDC website had been changed, but I just read the section on diagnosis and I could not believe how inaccurate it was. Does anyone know if steps are being taken to try to get this changed? This is very scary if insurance companies start using this information (as they already are, I should say) to deny treatment and benefits for people. Since when are lyme blood tests considered "highly accurate" for those who late stage illness?? THIS IS UNREAL!!
Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans. For detailed recommendations on serologic testing, click here.
When making a diagnosis of Lyme disease, health care providers should consider other diseases that may cause similar illness. Not all patients with Lyme disease will develop the characteristic bulls-eye rash, and many may not recall a tick bite. Laboratory testing is not recommended for persons who do not have symptoms of Lyme disease.
Laboratory Testing
Several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease.
CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.
1) The first step uses an ELISA or IFA test. These tests are designed to be very ``sensitive,'' meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended. If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.
2) The second step uses a Western blot test. Used appropriately, this test is designed to be ``specific,'' meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons. Sometimes two types of Western blot are performed, ``IgM'' and ``IgG.'' Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.
CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA. Doing so increases the potential for false positive results. Such results may lead to patients being treated for Lyme disease when they don't have it and not getting appropriate treatment for the true cause of their illness. For detailed recommendations for test performance and interpretation of serologic tests for Lyme disease, click here.
Other Types of Laboratory Testing
Some laboratories offer Lyme disease testing using assays whose accuracy and clinical usefulness have not been adequately established. These tests include urine antigen tests, immunofluorescent staining for cell wall-deficient forms of Borrelia burgdorferi, and lymphocyte transformation tests. In general, CDC does not recommend these tests. Click here for more information. Patients are encouraged to ask their physicians whether their testing for Lyme disease was performed using validated methods and whether results were interpreted using appropriate guidelines.
Testing Ticks
Patients who have removed a tick often wonder if they should have it tested. In general, the identification and testing of individual ticks is not useful for deciding if a person should get antibiotics following a tick bite. Nevertheless, some state or local health departments offer tick identification and testing as a community service or for research purposes. Check with your health department; the phone number is usually found in the government pages of the telephone book
Posted by TerryK (Member # 8552) on :
Yes it is unreal. I was reading this last week and I feel certain that this information will be very hard for us to overcome.
I started looking into my own State's diagnostic criteria and it is even stricter than the CDC meaning that some of the cases that meet the CDC reporting criteria are not included in the State figures! No wonder they say that there is no Lyme in my State.
To top it all off, the CDC risk map data is very old. Compiled in 1998! Some area's of my State that have actually had cases that met the very strict criteria are not showing on the risk map because the risk map data is close to a decade old!
I've been trying to figure out what "endemic" means and from what I can tell, much more of my State would be considered endemic if they ever update the info. Terry
Posted by snowflake (Member # 8950) on :
Hey Pepster,
Here are some more CDC quotes on diagnosis.
1. January 29, 2004 Testimony Statement by Paul Mead, M.D., M.P.H. Medical Epidemiologist Division of Vector-Borne Infectious Diseases, National Center for Infectious Diseases, Center for Disease Control and Prevention, U.S. Department of Health and Human Services on Hearing: CDC's Lyme Disease Prevention and Control Activities before the Connecticut Department of Public Health and the Connecticut Attorney General's Office
``No surveillance case definition is 100% accurate. There will always be some patients with Lyme disease whose illness does not meet the national surveillance case definition. For this reason, CDC has stated repeatedly that the surveillance case definition is not a substitute for sound clinical judgment. Given other compelling evidence, a physician may choose to treat a patient for Lyme disease when their condition does not meet the case definition.'' Source: Unite States Department of Health and Human Services http://www.hhs.gov/asl/testify/t040129.html
2. MMWR May, 2004
"Surveillance for LD is subject to several limitations. Studies from the early 1990s suggested that LD cases were underreported by six to 12-fold in some areas where LD is endemic (2,3); the current degree of underreporting for national data is unknown.
In addition, differences in the demographics of reported cases among states with above- and below-average incidence suggest variation in diagnostic and reporting practices among states. Clinicians are reminded that the LD case definition was developed for surveillance purposes and might not be appropriate for clinical management of individual patients (1)." From CDC Website: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm Source: MMWR Weekly May 7, 2004 / 53(17);365-369
3. Case Definitions for Infectious Conditions Under Public Health Surveillance ``The case definitions contained in this report 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. Use of additional clinical, epidemiologic, and laboratory data may enable a physician to diagnose a disease even though the formal surveillance case definition may not be met.''
``This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.'' From the CDC Website: http://www.cdc.gov/mmwr/preview/mmwrhtml/00047449.htm Posted by LYMESCIENCE (Member # 9259) on :
In reference to late stage Lyme. It is my understanding that those testing results are based on three studies. All done by Allan Steere, and they were not incredibly large.
The important thing to note is that he actually may be correct in saying that late stage blood tests are accurate. FOR SOME TYPES OF LYME.
To my understanding, these blood tests were based upon active Lyme arthritis. In this phase of Lyme disease, the bacteria readily has Osp A and B. However, this is the only presentation of Lyme Disease in humans for which these outer surface proteins are manafest.
These tests, in fact all of them, are based upon the testing for Lyme arthritis.
The key difference is that in humans, durring Borrelia infection, we have a lot of Osp C, which is unique to Humans, but the currently available testing is unable to detect this antibody because they are using the wrong Western Blots and Elisas.
Many of these blood tests were developed on Lab rats, who unfortunatly do not have Osp C, which is the main outer surface protein in human infection.
The testing is a very complex issue and I plan on researching this issue more. The key is that they are plain incorrect concerning late stage Lyme testing. They are scientifically incorrect.
In a few weeks, after my trip down to the Duke Med school library, I will be posting the full texts of all labratory data for late stage Lyme here on Lyme Net.
Posted by snowflake (Member # 8950) on :
Instead of a picture of the states, why don't they show a picture of the tip of an iceburg with the rest of us lymies drowning below the surface of the water??
Pffft! Posted by TerryK (Member # 8552) on :
Thanks for posting the map. Now if they would just update the risk map too! Terry
Posted by psano (Member # 7785) on :
I found this so upsetting that I wrote a letter to the CDC, which I posted separately.
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