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
October 29, 2012
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.
Chewable papaya & delicious customer service!
If you know me or follow my blog, you know I am a fan of Chewable Original Papaya Enzymes. In my post of September 24, I was writing a testimonial-esque entry about them, so I went to their website to copy the link and snag stock art for my blog. I noticed they were seeking testimonials, and since I was mid-gush on their product, I submitted one. Shortly afterward, I received an email from their director of sales and marketing asking which product I extolled. I replied, letting her know it was the original. Her next email thanked me and asked for my mailing address so that she could send some to me. Within a few days, I received a full bottle of 250 tablets along with 4 lifesaver-sized rolls for on the road. Here's a shout out to excellent customer service, a rarity these days. Thanks, Dorie!
October 18, 2012
The Potentially Marvelous Myth of Madison, Wisconsin
I was born in Madison, Wisconsin but my family moved when I was about a year old, so I have no conscious memories of the place as a child. Last year, I had the opportunity to spend some time in Madison officiating a handfasting for friends who live there. I didn't see much of the city, but I enjoyed the vibe of the land and the people. When I left, I thought I'd like to return someday. The newly married couple said they were planning to have an anniversary house party every 5 years. I was already looking forward to my next trip.
Flash forward to last August. I was in Vancouver, BC at a week-long camp and ran into an amazing homeopath, herbalist and friend from Salt Spring Island, Jamie Capranos. I had not seen her in years and am always delighted by her company. I scheduled an appointment with her during the week. (This was during the time I was not on the antibiotics and was quite concerned about having a major set-back.) Toward the end of our appointment, she recommended a naturopathic doctor that she had studied with. This ND had studied Lyme and co-infections in Europe and was treating people with good results. Jamie wasn't sure where she worked, other than somewhere in the Midwest, maybe Minnesota.
Shortly after I got home from Canada, I looked up the ND and she practices in - you guessed it - Madison, Wisconsin. Now, here's where it gets potentially marvelous. What if the remaining ingredients to my healing came from the land of my birth. It seems deliciously poetic and I'd like it to be true.
I called her office yesterday and she is taking new patients and schedules appointments on Wednesdays. Now I'm going to search for the cheapest flights I can purchase with my frequent flier miles, check with my friends in Madison about staying at their place, and schedule an appointment to see this ND. Hopeful! Yes, it feels good. Afraid! OK, that doesn't feel so good, but I reassure myself that the risk is worth it. Better to try and fail than not try at all, and should I succeed, well, yay!!
I think I'll write to my co-Lymie and ask her if she feels like heading to Madison with me. That would be very weird, surreal and likely quite fun. Why not?
Flash forward to last August. I was in Vancouver, BC at a week-long camp and ran into an amazing homeopath, herbalist and friend from Salt Spring Island, Jamie Capranos. I had not seen her in years and am always delighted by her company. I scheduled an appointment with her during the week. (This was during the time I was not on the antibiotics and was quite concerned about having a major set-back.) Toward the end of our appointment, she recommended a naturopathic doctor that she had studied with. This ND had studied Lyme and co-infections in Europe and was treating people with good results. Jamie wasn't sure where she worked, other than somewhere in the Midwest, maybe Minnesota.
Shortly after I got home from Canada, I looked up the ND and she practices in - you guessed it - Madison, Wisconsin. Now, here's where it gets potentially marvelous. What if the remaining ingredients to my healing came from the land of my birth. It seems deliciously poetic and I'd like it to be true.
I called her office yesterday and she is taking new patients and schedules appointments on Wednesdays. Now I'm going to search for the cheapest flights I can purchase with my frequent flier miles, check with my friends in Madison about staying at their place, and schedule an appointment to see this ND. Hopeful! Yes, it feels good. Afraid! OK, that doesn't feel so good, but I reassure myself that the risk is worth it. Better to try and fail than not try at all, and should I succeed, well, yay!!
I think I'll write to my co-Lymie and ask her if she feels like heading to Madison with me. That would be very weird, surreal and likely quite fun. Why not?
October 7, 2012
Today, I'm singing a new song - I love my antibiotics!
I'm 2+ weeks back into my antibiotic/anti-parasitic therapy and am amazed at how quickly some of those creepy little symptoms are receding. Woohoo! I am somewhat shocked by how quickly my perspective changed, but then again the anti-bug-drugs are using their super powers to apply the breaks to the roller coaster-esque feeling of barreling down hill at adrenaline-producing speeds. It's almost exhilarating (and I can't believe I just wrote those words!)
Being the proverbial optimist, I'm a silver lining seeker and always have been. So here's an odd thread to the silver lining. I've recently been in touch with a long lost friend who now has Lyme and co-infections. We've been sharing research, alternative therapies, doctor names, and any other useful (or potentially useful) information via phone and text. We see the same doctor in Maryland and decided to make a girls' night out of our last visit. I made back to back appointments for us and she sprung for a funky, comfy B&B in DC. We met last Thursday evening and had a lovely dinner (I indulged in a Basil Mojito - Wow - had the aches to prove it later, but it was worth it.)
I had a great time catching up with her. We were able to share the nutty bits about this disease without editing or worrying about the impact on another. What a breath of fresh air! The evening ended as she told me the plot of a novel she's writing for my bedtime story. It was AMAZING and I slipped off into a magical, deep sleep.
We slogged our way out of DC bright and early on Friday morning and headed up to the doctor. It was quite surreal sitting next to her in the waiting room and comparing notes at a coffee shop after our appointments. Such a brilliant combination of fun and duty and a lovely way to weave joy into despair and create more beauty. Ahhhhhhh. Thanks, Karen!
Being the proverbial optimist, I'm a silver lining seeker and always have been. So here's an odd thread to the silver lining. I've recently been in touch with a long lost friend who now has Lyme and co-infections. We've been sharing research, alternative therapies, doctor names, and any other useful (or potentially useful) information via phone and text. We see the same doctor in Maryland and decided to make a girls' night out of our last visit. I made back to back appointments for us and she sprung for a funky, comfy B&B in DC. We met last Thursday evening and had a lovely dinner (I indulged in a Basil Mojito - Wow - had the aches to prove it later, but it was worth it.)
I had a great time catching up with her. We were able to share the nutty bits about this disease without editing or worrying about the impact on another. What a breath of fresh air! The evening ended as she told me the plot of a novel she's writing for my bedtime story. It was AMAZING and I slipped off into a magical, deep sleep.
We slogged our way out of DC bright and early on Friday morning and headed up to the doctor. It was quite surreal sitting next to her in the waiting room and comparing notes at a coffee shop after our appointments. Such a brilliant combination of fun and duty and a lovely way to weave joy into despair and create more beauty. Ahhhhhhh. Thanks, Karen!
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