Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I am embarrassed to confess that I am confused over these three basic points.
I would appreciate an explanation. My newly diagnosed Lyme brain is on overload.
What exactly does "surveillance" mean to the CDC? I sort of understand that it's different than counting actual cases of Lyme patients, but why would they do that? And what relevance does surveillance have?
What are bands? Are they tiny strands or molecules that are in all living things and Lyme tests look for specific ones?
Finally, to be CDC positive a person needs 8 specific bands?
Thanks for helping me understand.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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hshbmom
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posted
"Surveillance" is government monitioring of the spread of Lyme disease across the US...also known as tracking. Surveillance looks for trends as the disease spreads across the US.
The Lyme disease case definition is not supposed to be used to diagnose the disease in a clinical setting (in a doctor's office), or to decide whether to treat a person for Lyme disease. The Lyme Western blot test result form has this statement in plain language, but it's often overlooked by physicians and other healthcare workers.
"Bands" are the various antibody bands that are measured by the Lyme Western blot test. Antibodies are produced as a result of infection in the body. Antibodies are produced in response to the different components of the Lyme bacterium, such as the tail. These specific antibody bands are identified by their different weights, such as the 31 and 34 kiliDalton (kD) bands.
A "CDC positive" person is a person with a positive Lyme Western blot test result that meets the CDC's strict surveillance case definition for Lyme disease. Their case of Lyme disease will be included in the Lyme case count for their county, and therefore their state.
The strict surveillance criteria (definition)misses approximately 9 of 10 people infected with Lyme disease. Only about 10% of people actually meet the very strict definition of Lyme disease and are included in the official Lyme case count.
I suggest you read the current case definition for Lyme disease. Many other terms are clearly defined.
...such as an "endemic county"...a county that has two reported cases of Lyme disease. TWO !!!
Is your county endemic for Lyme disease? Contact the epidemiology division of your state health department. Ask them to send you all of the the Lyme case counts, starting when they began keeping this data. Any county with two or more cases of Lyme disease meets the definintion of a county "endemic for Lyme disease." This is very important to determine "exposure."
If someone would post a link to the current Lyme case definition I'd appreciate it. It will answer many of your questions.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
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You'll have do to a search for "Lyme" to find the Lyme definition; it's about 1/3 of the way down this huge web page.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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TF
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Member # 14183
posted
Try reading the explanation of "bands" given in the thread "Dr. C's Western Blot Explanation." It is found permanently near the top of the Medical Questions.
A band is formed on the Western Blot test when they put a piece of the lyme bacteria on the test paper (actually a gel strip) and antibodies in your blood attach to that piece. If enough attach, a visible dark band shows up on the test result. That is then reported as a positive.
Each piece of the lyme bacteria on the Western Blot is identifed by its weight. If it weighs 18 kiloDaltons, for example, that is called band 18. If you have antibodies to that part of the lyme bacteria, they will attach and a dark band will form on 18.
Our bodies make antibodies to various parts of the lyme bacteria, not to the lyme bacteria as a whole. So, the Western Blot cuts up a lyme bacteria into many parts to do the test.
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shazdancer
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posted
The most recent surveillance case definition (2008) can be found HERE.
Hope that helps you, Sharon
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Leelee
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Member # 19112
posted
Thank you all for responding. I am now getting a better grip on all this information.
I printed every single link every one of you gave me and I am going to pore over this information again and again.
hshbmom, thank you for such a wonderfully easy to comprehend explanation.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Carol in PA
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi Carol in PA,
Thanks so much! I went to the Jemsek Clinic website and printed every single one of the pages. I can't stop reading the information.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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hshbmom
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Member # 9478
posted
I'm glad someone added the most up to date links to the CDC definition and Dr. C's explanation of the Western blot.
I was a bit sketchy on the band explanation.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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