posted
I've recently been thinking about what I can do to help prevent lyme disease and more specifically, have something positive come out of all the suffering I've had to go through for the past decade.
I realized that if just 1 person had told me that the blood test for lyme was not definitive I would not be in the situation I am today, suffering through lyme and co. treatment after having the infections for over 15 years undiagnosed.
The only reason I now know I have lyme is because someone eventually did tell a family member of mine this fact.
My idea is to get the word out about the blood test and the high false negative rate.
I grew up knowing about ticks, knowing about lyme disease, knowing about the bullseye rash but NEVER knowing that the blood test (western blot and elisa) is unreliable!
Over the 15 years I have had this disease I have probably had about 10 western blots, all negative. Had I known then, or had my doctors known that the test is unreliable, I would have explored lyme further. But my parents and I never knew, so after getting a negative lyme test, we moved on to the next thing.
My goal is to have the unreliability of the lyme western blot common knowledge. Just like it is common knowledge that ticks carry lyme disease and a bite can cause a bullseye rash.
I am hoping to get the word out through any means possible; emails, brochures, posters, maybe even billboards. I need some ideas on how to start this.
Are there any organizations around that are doing similar work? Would I have to start my own? Any ideas or information is appreciated!
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Don't have energy to chat but you can look at this... might help?
From ILADS old guidelines.
"Diagnosis of Lyme disease by two-tier confirmation fails to detect up to 90% of cases and does not distinguish between acute, chronic, or resolved infection [21].
Cameron DJ. Monitoring Lyme disease in the community - First surveillance database sentinel health site. Proceedings of the 12th Annual International Scientific Conference on Lyme Disease and Other Spirochetal and Tick-Borne Disorders (1999). J. Clin. Microbiol. 31, 3090-3095
Hopkins also has a study out (2005 I believe) that states approximately 75% of those infected with Lyme are missed using the standard tests.
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