I just came upon this website and am totally dazzled by the resources and content. Impressive! http://www.virginialyme.org/
I was also surprised and delighted that the Governor of Virginia organized a task force to study Lyme. They held forums for patients and providers, both. (I don't know how I missed out on that one!) Here's a link to the findings and recommendations. It's a step in the right direction, but we still have a long way to go.
Virginia Task Force Report
November 10, 2012
November 5, 2012
Holy horse pill, Bat Girl!
These new antibiotics are the biggest pills I’ve ever seen that are
supposed to be swallowed whole.
Seriously?? Check this out! They're huge!
I've
had the prescription for a few days now, but have been unwilling to
take them until after the weekend. If they work, I'll likely feel
awful. If they don't work, I'll likely feel awful. You can imagine my
resistance, I'm sure. I have a 3 week trip away from home planned that
starts mid-month and ends in December after my appointment with the
naturopathic doctor in WI. Increasing my medications is a scary
undertaking right now.
In
other news, I've finally crumbled under the pain and the pressure to
manage it, so I've made an appointment with the UVA Pain Management
Clinic next week. I'm looking forward to seeing some experts about my
protocol since this will likely be a long haul. My health care really is
becoming a full-time job.
Stay
tuned for the conversation with the doctor that denied me care last
spring. Someone in his office called on Friday to say he wants to talk
to me in light of the test results I sent to him. I'm taking
pro-action, one doctor at a time.
October 29, 2012
Dr. Jemsek at ILADS 2012
This video is worth taking the time to watch if you are a healthcare provider or seeking treatment and information. Dr. Jemsek is a delightful and informed speaker. This is a teaser trailer for a purchasable video, but is still full of good information and validation.
Dr. Jemsek at the 2012 ILADS Conference
Dr. Jemsek at the 2012 ILADS Conference
The IDSA guidelines seriously need to be thrown out!
I am very grateful for the thoughtful research and digestible layout that LymeDisease.org published regarding why we protest the IDSA guidelines for diagnosing and treating Lyme Disease. And those clever boots included a link to sign the petition to have these guidelines thrown out. This rocks!! Please, if you haven't already signed the petition, do it now!
LymeDisease.org Protest Rally - Why we protest against the IDSA
LymeDisease.org Protest Rally - Why we protest against the IDSA
Strange days, indeed
It is very strange that a confirmed diagnosis of an awful disease could bring me relief, but it has. I feel like it's my "See I'm Not Crazy" certificate. What a tragic commentary on our current health care marketplace and the continuing downward spiral of medical ethics in the U.S. This is sickening, but I'll not go into a full rant now.
Silver Lining: I called the infectious disease doctor that denied me care three times this spring because he didn't get positive test results. I had his cell phone number from years ago and he answered when I called. I was stunned for a second, but quickly got it together and explained that I had in my hands a CDC-worthy positive blood test for a current or new infection of Lyme from Stony Brook University's Lyme Disease Research Lab and challenged him to re-think his protocol. He was actually pretty cool about it, but in response to my statement about getting treatment, he asked with a little sneer in his voice "yeah, but are you getting better?" Irksome man. I said I wasn't getting better yet, but I stopped getting horrifically worse. He softly repeated what I said as if considering it seriously and then became quite inquisitive. I asked if I could send him a copy of the test results and he said he would love to see them and compare them to what he had.
The first time I saw this doctor was in 2002. He didn't believe I still had Lyme then either. I had been on oral antibiotics for 2 1/2 years and he was very stubborn about it all, but I was more so. I kept showing up, pleading my case, refusing to be silenced or go away, and he finally gave me the PICC line (IV antibiotics) in 2003 that changed my life for the better. I also remember that he was horrified when I had a herx from the first dose and felt like I was going to die, and that he backed off the dose and worked me back up to the full amount. Somehow, I expected that we had worked through all of this and it would be different this time, but it was awful when I went to see him in March of this year. He denied my reality over and over again. I went to his office 3 times for various tests and consultations. I felt like I had to bring this back to him, not just to say "I told you so" but to pave the way for better care and attention to the people that come to him after me. It's a very small piece of activism, but important to me. I will admit that I was shaking with adrenaline when I hung up, but don't think it showed in my voice.
I am so very grateful to my doctor in MD who started treating me immediately based on my symptoms and medical history, and I am more grateful than I can ever say to Karen for sharing her resources with me and to Janice for bending the rules for me.
And now the big news, which I'm tucking away down here at the bottom of a long post, because it's a tough one to admit and perhaps fewer readers will make it this far. Yes, I know the reasoning is silly, but it's my brain. I filed for disability days before I got my test results. I am prepared for a long haul but pray for FEGG - fast, easy, gentle, graceful. I am unable to work reliably, even for the simplest tasks like dishes and laundry. Crow has been picking up more and more of the slack at home - like I haven't been able to mow the lawn in over a year now - and we're losing about $1000 a month. This feels like the responsible thing to do and I hope the impact on my mind and health will be manageable with good friends and therapists.
Hopefully, this piece of paper will help soothe the minds and erase any vestiges of doubt from my healthcare providers and help them focus on the best possible treatment for me. More tests for co-infections will start next month.
Silver Lining: I called the infectious disease doctor that denied me care three times this spring because he didn't get positive test results. I had his cell phone number from years ago and he answered when I called. I was stunned for a second, but quickly got it together and explained that I had in my hands a CDC-worthy positive blood test for a current or new infection of Lyme from Stony Brook University's Lyme Disease Research Lab and challenged him to re-think his protocol. He was actually pretty cool about it, but in response to my statement about getting treatment, he asked with a little sneer in his voice "yeah, but are you getting better?" Irksome man. I said I wasn't getting better yet, but I stopped getting horrifically worse. He softly repeated what I said as if considering it seriously and then became quite inquisitive. I asked if I could send him a copy of the test results and he said he would love to see them and compare them to what he had.
The first time I saw this doctor was in 2002. He didn't believe I still had Lyme then either. I had been on oral antibiotics for 2 1/2 years and he was very stubborn about it all, but I was more so. I kept showing up, pleading my case, refusing to be silenced or go away, and he finally gave me the PICC line (IV antibiotics) in 2003 that changed my life for the better. I also remember that he was horrified when I had a herx from the first dose and felt like I was going to die, and that he backed off the dose and worked me back up to the full amount. Somehow, I expected that we had worked through all of this and it would be different this time, but it was awful when I went to see him in March of this year. He denied my reality over and over again. I went to his office 3 times for various tests and consultations. I felt like I had to bring this back to him, not just to say "I told you so" but to pave the way for better care and attention to the people that come to him after me. It's a very small piece of activism, but important to me. I will admit that I was shaking with adrenaline when I hung up, but don't think it showed in my voice.
I am so very grateful to my doctor in MD who started treating me immediately based on my symptoms and medical history, and I am more grateful than I can ever say to Karen for sharing her resources with me and to Janice for bending the rules for me.
And now the big news, which I'm tucking away down here at the bottom of a long post, because it's a tough one to admit and perhaps fewer readers will make it this far. Yes, I know the reasoning is silly, but it's my brain. I filed for disability days before I got my test results. I am prepared for a long haul but pray for FEGG - fast, easy, gentle, graceful. I am unable to work reliably, even for the simplest tasks like dishes and laundry. Crow has been picking up more and more of the slack at home - like I haven't been able to mow the lawn in over a year now - and we're losing about $1000 a month. This feels like the responsible thing to do and I hope the impact on my mind and health will be manageable with good friends and therapists.
Hopefully, this piece of paper will help soothe the minds and erase any vestiges of doubt from my healthcare providers and help them focus on the best possible treatment for me. More tests for co-infections will start next month.
October 23, 2012
Just when I thought it was safe to get off the couch...WHAM!
The Herxheimer Reaction (known to the in-fected crowd as a herx) knocked me back to the couch. Who knew that gravity could be painful, oppressive and immobilizing? That's just weird.
After 3 days of herxing and frustrating mobility issues (like not being able to walk long enough to grocery shop) I caved in and ordered a cane with a folding seat. It's made of birchwood and looks well made. Check it out!
After 3 days of herxing and frustrating mobility issues (like not being able to walk long enough to grocery shop) I caved in and ordered a cane with a folding seat. It's made of birchwood and looks well made. Check it out!
October 22, 2012
Lyme activism - Please sign the petition!!!
Please sign the petition if you haven't already! This link from LymeDisease.org sums up the problems thousands of us are facing to receive treatment, care and insurance coverage. This is the fastest growing infectious disease in the country and you or someone you know likely has it. Until we change these guidelines, people will go undiagnosed and untreated. Please sign the petition ~ just click here! You will have my never-ending thanks.
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