LYMEPOLICYWONK: Mammograms, pap smears and Lyme? Statistical lives vs personal lives. You choose.
Have you been following the news lately? So much about health care reform and guidelines revisions that appear to be blatant cost containment issues shrouded in statistical mumbo jumbo. The basis for the revisions to mammograms and cervical cancer screening (is it a coincidence that these are both female specific diseases?) is that it ‘makes sense’ based on a pure statistical analysis of lives saved and costs. Let me tell you something. Statistical lives matter only to those crunching numbers, read insurance companies (close read, ah well that would be the government, sigh). The personal life is everything. I don’t mind losing 1 in a 1,000, but I do mind losing my mother, my daughter, my sister. How about you? So how does this relate to Lyme disease you may be asking?
I don’t know how many of you know about Bayesian statistics and Lyme diagnosis. But, here goes, cover your eyes if you don’t like math. One of the things that the IDSA camp holds that really chaps my hide is that you shouldn’t even test someone for Lyme disease unless they are in an area that is endemic to Lyme disease. What is that about? Never mind that we don’t know what areas are truly endemic because we haven’t done the tick studies and the health departments are following CDC surveillance criteria in reporting——which means, of course, that physicians do not even have a clue that they should be testing for Lyme disease. And never mind that people travel to endemic areas and ticks travel the world by catching a flight on the nearest migrating bird.
Never mind that. Let’s suppose it actually is the case that Lyme is uncommon in your neck of the woods? Let’s suppose it’s rare, even. Don’t you deserve a diagnosis and treatment if you have it? And, how will we even know its endemic unless we test people? It boils down to this. Statistical lives mean nothing. Personal lives—everything. Ah, now we’re talking. We need to change the conversation. Diagnosis means the possibility of restoring human live, real time, on this planet. Need more information? I don’t think so. Get tested. Get treated. Get well.
- September 21, 2014 at 5:52 am
I live in NC and have since 2000. Since 2000 myself and my 2 daughters have been told by the medical community here that our lives don’t count because statistically we couldn’t even have tick-borne illness unless we brought it with us. Additionally, we were told that we had had sufficient antibiotics in 2-10 day courses to eradicate the infection. In 2004 we became so neurologically ill that we, with the help of a healthier family member, found our own lyme-literate doctor. Now, although, we are still chronically ill, we possibly have futures. There is also now in 2014 a lyme-literate doctor once again in NC. The fight continues for lyme patients to be heard in the context of the personal lives that truly describe the real people that we are. I long to do advocacy work….I, however, am still largely too ill. To those carrying the torch for the rest of us, we are humbled by your passionate work.
- October 8, 2014 at 3:27 pm
I too live in NC, 2004…ditto, I had a LLD in NC, and actually had picc line in 2005… However co infections have taken over my body once again…I need a NC doctor, opposed the current one I see on the west coast.. I am very ill, unable to fly @ this point…to get to west coat.
I am so glad I ran across this comment !!
- February 2, 2015 at 8:43 am
I never had any real answers for my Lyme Disease in 1994 when I was living in CT. I was lucky enough to get a Dr who was well versed in the subject, having had her own case of Lyme. She put me on a year of antibiotics, not now, the recommended ones. Tests were inconclusive. I never saw a bulls eye rash or had a high fever. I live alone so there was no one to see the tick if it was on my back. Since I had odd symptoms for years before finally giving into the disease, that was enough for my Dr. to provide treatment. Insurance paid for that, but not for the year of IV antibiotics, my poor sister has had, that had to come out of pocket. I can’t afford to pay for my treatment. I don’t think that it helped my sister much, she is miserable now with nasty Neuro Lyme and in Texas, so not getting treated by the right doctors, They have a patch system, see a symtom and find a medication to treat that symptom. They never look for the cause. Since the test itself is inadequate, Drs. need to be well versed in the subject and take it seriously wether they are in an endemic part of the country or not.
Now I hear there is the possibility that it can be sexually transmitted. I am with a new partner, my last partner obviously was not doing well with his Neuro Lyme. I wonder if the test couldn’t be sexually determined, anotherward test sexual secretions rather than the inadequate blood test?
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