Tuesday, July 9, 2013
Media Pieces on Lyme and a Quick Update
NYTimes: When Lyme Disease Lasts and Lasts
Often misdiagnosed and mistreated, chronic Lyme disease leaves thousands of people physically and mentally debilitated and without a medically established recourse
I am sure many of you heard or read about the New Yorker piece on Lyme Wars. Terri Gross also interviewed Michael Specter on NPR about this. I have yet to finish either, and to be honest, I think it's out of reluctance because I am tired of hearing the same old thing from IDSA zealots. Yes, I acknowledge that the press and the media have paid more attention to chronic or late-stage Lyme Disease recently, but I still don't know that the general public really understands the entire picture.
My friend forwarded me the above article, "When Lyme Disease Lasts and Lasts," and though I was glad the media finally used the term "chronic Lyme" and depicted a woman who was diagnosed with MS but who actually had Lyme, I still feel the term "Post-Treatment Lyme Disease Syndrome (PTLDS)" used in the article just detracts from the seriousness and reality of what that (PTLDS) actually is - LYME DISEASE! PTLDS is Lyme Disease, is it not?? PTLDS is a term the IDSA used, I thought, to make chronic Lyme sufferers feel like there was no answer or solution. I am open to hearing your comments on this one.
To be honest, I am so exhausted reading about the Lyme Controversy. I am tired of how even a possibly well-intentioned article may confuse the public. I am sick of this controversy preventing people from understanding that those with Lyme Disease can suffer relentlessly and in a way that most people can never understand. Not just because of the disease but because of a medical system that treats Lyme patients like they are crazy, 'making up' an illness, depressed, etc. So I am happy to hear your comments but I think it will be a while before I sit down and read the Lyme Wars. I am fed up. I won't stop fighting for Lyme advocacy, but I may just stop listening to the negative voices I heard through the last 8 years of my life.
In other news, my sincere apologies for not posting recently. I have a lot of material, but have so much going on, including 3 moves in 3 months. So, I will be up with more information soon! I also apologize for not responding to many emails to my firstname.lastname@example.org account. I will get to those when things calm down.
Until then, remember, no matter what you read or hear, you CAN and WILL get better if you believe it. It may seem like there is no light at the end of the tunnel, but there IS. I am proof of it. Don't give up hope. There is ALWAYS HOPE.
Posted by MM at 1:28 AM