Topic: Ever show a physician your state's LD statistics?
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Gather your state Lyme case counts, put the county-by-county results in a spreadsheet, and transfer the total number of cases to a county map.
Mark the endemic counties and the counties that are just one case from being endemic with different colors...such as red for endemic counties and light red for counties only one case from endemic.
Copy the CDC's complete current definition of Lyme disease and highlight their definition of an "endemic county." Also highlight the statements that the case definition is used for surveillance purposes and Lyme test results are not to be used to diagnosis the disease or determine treatment.
Approach this step logically, without being overly emotional and a physician will be more likely to listen to the truth.
HOW DO I GET THIS INFORMATION ?
Obtain the county case counts from your state department of health's epidemiology division. Ask for all the Lyme case counts.
The counts from the 90's have been put on the computer and are easy to distribute. States should have records back to the 80's, but may only give you the stats from the 90's. Be sure to ask for the older records as well.
Contact the district health department supervisor responsible for contacting people with positive Lyme test results (ELISA & Western blot).
Ask how many cases were reported this month or quarter. Ask how many cases were classified as confirmed, probable, or suspect. This number will give you a more accurate estimate of the # of cases in your area. Only confirmed and probable cases are added to the official Lyme case count...in Alabama.
Remember the actual number of cases is estimated by the CDC to be 10% higher.
I'll post the link to the current case definition as soon as I find it. If you have the link, please add it.
I showed the official statistics and definitions to my PCP (an internist). This physician was very surprised our county is endemic by CDC standards. He copied the map and kept it. He's warming up to the idea of Lyme. His attitude has changed after seeing the difference proper treatment has made in my health.
Take one more step and post your spreadsheet and county map here. Dispel the myth that, "We don't have Lyme in _____!"
For more information about your state see the Lyme Memorial State Statistics.
posted
Nancy, outstanding suggestion to all of us!
BELOW is the post that tincup recently posted; at end is LINK from 1980 to mid Jan. 2008 *********************************************
Once again Pennsylvania and Maryland are topping the list with the most reported cases of Lyme disease so far this year, with California coming in third. And it's still JANUARY!
In mid-December 2007, the Maryland DHMH reported to legislators that they had over 1,000 new cases they hadn't completed or counted. However, the total for Maryland in 2007 did NOT reflect those extra 1,000 cases. Where did they go?
13 states have already reported cases this year... in JANUARY.... and many are cold weather states.
Colorado, which usually only reports a couple of cases per year, if any, already has one on record.
DC dropped from 62 to 13 cases in one year 06-07. Was one of the 13 cases President Bush's case?
Connecticut dropped again (2006-07)- no doubt due to their new fangled, high dollar reporting system that still isn't working properly.
Florida already has several cases reported so far this year, which is unusual.
Guam, Puerto Rico, South Dakota and Oklahoma were the only ones reporting NO CASES LAST YEAR.
Since reporting began in 1980 we have increased from 120 cases a year to over 20,000 cases per year, nationwide. These figures represent ONLY the reported cases.
According to the CDC, for a more accurate figure multiple the numbers by 10. That will provide you with the CDC 10-fold assessment totals and will show what they believe to be closer to the actual number of cases occurring.
And note: 75-90 percent of people with Lyme are being missed using the current standard tests, according to Hopkins and ILADS studies.
These people have little chance of ever being counted, much less diagnosed and/or treated properly, which can result in hundreds of thousands developing late stage Lyme and possibly becoming disabled or worse in the next few years.
Betty note: I tried printing out the chart, but it goes SIDEWAYS, and tried printing in pages 1, 2, 3; it kept printing page 1 only!
So just a warning if others try to do this; use your PRINT REVIEW FIRST which I did, and indicated DIFFERENT pages, but still got page 1 only! I gave up after 8 tries! uffda
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posted
Grew up in south jersey, live in ny, and work in connecticut. It still took years. These days the doctors in these areas have finally admitted there is a problem. Friends have noticed they now look to lyme first, before they accept anything else
A friend of mine had exactly the opposite problem we all have in jersey. She kept getting diagnosed with lyme (all tests negative) before they finally diagnosed her with ms
They didn't accept that she had it until they did a spinal tap. Very painful procedure by the way.
Posts: 102 | From ny | Registered: Feb 2008
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