Thursday, January 26, 2012
Sign the Petition!
If you are familiar with Lyme Disease, no doubt you are also familiar with the 2006 IDSA guidelines that have so restricted treatment and have been a disaster for Lyme patients. There is currently a petition at lymedisease.org asking for the removal of these guidelines from the National Guidelines Clearinghouse (NGC) until they have sufficiently proven that they are in compliance with the NGC's requirement of reviewing & revising the guidelines every five years. Click here to read more about this issue, and to sign the petition.
Monday, January 9, 2012
I'm Still Here...
Hello all my fellow Lymies! I haven't posted in over a year because life has been busy and, well, I just hardly ever think about Lyme Disease anymore. It's WONDERFUL! But more about my busy year later. This past week several things have happened that felt like cosmic forces were nudging me to get back on and blog some more, so here I am.
First, my husband and I got a fundraising letter from lymedisease.org. I have participated in a couple of patient surveys that they have conducted, and we like to stay "in the loop" as far as what is going on in the Lyme community. Reading through the updates, current projects and initiatives reminded us of how serious this illness is and how much effort is needed in paving the way for better testing, diagnosis, awareness and treatment of this terrible disease. It also reminded us of our own struggles in fighting to get my health back. As we read and discussed the letter, we decided that we were going to pass it along to some of our close friends and family that witnessed our struggle with Lyme and that might be willing to donate to the cause. We also decided to add this to our list of "favorite charities." If you are a Lyme patient, and haven't yet taken their survey, you can do so by going to www.lymedisease.org and clicking on the yellow take treatment guidelines survey on the right hand side.
Second, in the last five days I have heard from three different people that are wondering about Lyme, due to progressively worsening health, or who have already been diagnosed with Lyme and are wondering what to do next. I really hope that by sharing my story, and the information that my husband and I gleaned from our experience with Lyme, we might be able to help someone. I also plan to give updates on how everything's worked out for me, and share the current ways I'm managing my health. I've got to run for now, but I'll be back soon, I promise!
First, my husband and I got a fundraising letter from lymedisease.org. I have participated in a couple of patient surveys that they have conducted, and we like to stay "in the loop" as far as what is going on in the Lyme community. Reading through the updates, current projects and initiatives reminded us of how serious this illness is and how much effort is needed in paving the way for better testing, diagnosis, awareness and treatment of this terrible disease. It also reminded us of our own struggles in fighting to get my health back. As we read and discussed the letter, we decided that we were going to pass it along to some of our close friends and family that witnessed our struggle with Lyme and that might be willing to donate to the cause. We also decided to add this to our list of "favorite charities." If you are a Lyme patient, and haven't yet taken their survey, you can do so by going to www.lymedisease.org and clicking on the yellow take treatment guidelines survey on the right hand side.
Second, in the last five days I have heard from three different people that are wondering about Lyme, due to progressively worsening health, or who have already been diagnosed with Lyme and are wondering what to do next. I really hope that by sharing my story, and the information that my husband and I gleaned from our experience with Lyme, we might be able to help someone. I also plan to give updates on how everything's worked out for me, and share the current ways I'm managing my health. I've got to run for now, but I'll be back soon, I promise!
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