Thursday, October 21, 2010

Under Our skin Screening and LDA/Columbia Conference

The screening of Under Our Skin goes well. I think there are maybe 40 to 50 people who attend and what's nice to see is people who don't have lyme have come to educate themselves about the illness. My boyfriend, KG, helps me set up and put out all of the lyme brochures and pamphlets, and my sister and parents come to support me. KG hasn't seen the film, and I know it's a lot to take in. When the film ends there is sort of a stunned silence, and I know the film has gotten it's message across. I don't think anyone is quite prepared to watch the film and to learn how incredibly debilitating the disease can be. And also to learn that it's not just about "borrelia burgdorferi" (the lyme bacteria) anymore. But it's also about co-infections, that patients have to actually fight to get care, and that doctors are losing their licenses because of the care they do give. I meet a woman who attends the screening who also has Q Fever, which validates for me I possibly did pick it up from a tick, and not in Ireland. I wonder if it is becoming a more prevalent co-infection too?

I attend the Lyme Disease Association and Columbia conference in Philadelphia. It is a 3 day conference with lyme disease doctors, specialists and others with experience with lyme. It is informative but also depressing for me. I feel overwhelmed by the amount of information, and also that here I am with all of these people who are so incredibly intelligent and fighting lyme on the front lines, but I am still sick. There is a woman who is an entomologist and she tells us that from her research they have found that ticks are now in 26 of the 50 states, and that most are now carrying many different bacteria. She tells us that Rocky Mountain Spotted Fever takes only 10 hours to infect someone. Something else she tells us is that ticks can find humans 5 different ways; our CO2, our movement, body heat, vibration and sound. Wow. That really creeps me out! Another piece of advice she gives which I will NEVER forget; if you have been hiking or in an area with tick exposure, when you get home make sure to put your clothes in the dryer and do NOT leave them on the floor in your room next to your bed. While you are sleeping the ticks will find their way to you because of the above 5 reasons!

What is frustrating too is being at the conference and knowing that despite all of this fantastic research and scientific/medical evidence of what is happening with ticks/patients, it is not getting to the doctors fast enough so that they are able to recognize lyme disease in their patients and thus treat them in a timely way. There is still so much ignorance, resistance and fear in the medical community, even though patients are right in front of doctors, sick, and getting worse. I realize that is why it's so important for patients to continue to fight for awareness, better treatment options, and also on the political front.

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