Many doctors, advocates and patients fought vigorously against implementing the proposed 'Surveillance Case Definition', saying in part that it would decrease the numbers reported to the CDC even further.
One person stepped in at the last minute and supported the CSTE and IDSA's surveillance proposal, while kicking the rest of us across the room for not following suit.
Their letter was brought up in the CSTE meeting (by IDSA supporters) as an approval from the entire Lyme Community (prior to voting on the proposal).
I still can not see how this new definition being put in place has helped our situation.
Posted by Pinelady (Member # 18524) on :
I agree. I think it all needs thrown out.
And I think they need to let the LLMD's who treat,
not the ones sitting in a paper pushing office make
the critical definition of who is sick and who is not.
Posted by sixgoofykids (Member # 11141) on :
My case was not reported with the current criteria even though I was CDC positive with 8 IgG bands on my Western Blot. I contacted the CDC and they told me if I wasn't happy with my doctor to change doctors. They didn't care that it wasn't reported.
Posted by AliG (Member # 9734) on :
Huh?
Isn't this just supporting not requiring the ELISA in order to be counted by a WB positive?
I understand that the WB requirements for reporting should ALSO be changed because they're stupid.... and that clinical diagnoses with tick-bite should also be included, but I have no idea what.....
OH!!! I think I get it. Did this exclude those with a positive ELISA & only include those who had 9,000 positive WB bands?
I think I'm still confused here, could you please clarify for me what the whole testing issue was that was being changed.
Thanks! Posted by hshbmom (Member # 9478) on :
My first case was reported, but not added to the Lyme case count for 2006. I was clinically diagnosed with Lyme disease in July 2006 and had numerous photos of my EM. I tested positive in Dec. 2006. The health department was either too lazy to look at my address to determine which county I lived in... or the doctor's office failed to list my county on the case report form. I KNOW the doctor's office had this information.
Plus, the health department contacted me AFTER the deadline to amend the previous year's Lyme case count had passed. That's one way to keep the case count down!
I was diagnosed with Lyme again in June...I had a new tick bite and a new bulls-eye rash. I will find out next week if my case was reported. The physician told me they planned to report it, but they were having trouble obtaining the proper report form. The health department has not called and it's been nearly two months.
Posted by Amy C (Member # 19297) on :
How do you know if your case was reported? I was CDC positive in 2008.
Posted by gemofnj (Member # 15551) on :
yes, i have the same question as amy?
how do we know? i was CDC positive, and I was never notified in any way regarding my lyme.
Posted by LymeLearned (Member # 20565) on :
hshbmom is right.
They don't WANT to count us! We should tally up our own cases on some site to squash the idea the public keeps getting about how "rare" this is.
That's ANOTHER thing that got me. I was in Yosemite, with NO CLUE how common or serious it was, or that it had spread to CA.
I hate the lies our government want to spread about.
Posted by Maryland Mom (Member # 2043) on :
Oh, this makes my blood boil. MY whole family contracted Lyme in Maryland, and I think the only case out of our family that was reported was one of my sons.
He was hospitalized with septic arthritis and had a sky high ELISA, then a WB that was so positive even the ducks recognized it as Lyme. The rest of us? We just THINK we have Lyme.
Idiots.
Posted by Robin123 (Member # 9197) on :
I thought when they count you, you get a call from the county health dept. At least that's what happens here when someone is CDC positive.
Posted by Need Lots of Help (Member # 18603) on :
When I found out that I had lyme, I made sure our Health Department counted us. By then, I knew about the controversy and I wanted us to be counted.
We are in Florida and this isn't lyme country so to speak. But, when I got our Igenex results, I took them to my local health department. And, we were both CDC positive, so it was easier to be counted.
Shalome
Posted by IckyTicky (Member # 21466) on :
Honestly, I'm afraid to be counted. I'm CDC +, my teenager is CDC+, my 6 yr old son just came back CDC+... still waiting on my 8 yr olds test results but she has been clinically diagnosed. My husband came back pos. but not CDC pos.
I don't want the damn government knowing. I don't want to be exterminated in the future "for the greater good"
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