And thanks, everyone, for keeping the rally in your thoughts and prayers tomorrow.
AND...
...I finally got the information back about we did on the Ya-Ya Walk Against Lyme Disease. Hard to get everyone to communicate, since it was all done by email at a very busy time of year. But the results are:
OUR TEAM WON!!!
The other team will need to fork over about $150 total to a Lyme cause. I call that a WIN for everybody. In addition, my son "Jake" and I were able to give over $450 in pledges and donations to the Charles Ray Jones Defense Fund and the LymeAid4Kids fund.
I am touched by the caring of everyone who participated, both from the Ya-Ya board who walked, and from those of you here who donated. I don't want to name you all, you'll might get solicited to death, but you and I both know who you are, and I am humbled and grateful.
See if we make it onto the news tomorrow and Saturday morning...
Just got back from the rally last night, and wanted to tell you how it went...
I truly had a great time, and felt like good information was shared. I thought it was so important, that I brought son Jake along. He spoke and shared his story. Hey, if he's having trouble learning history, maybe he can learn something making a little history!
It was very tough getting Jake to wake up that morning, as his antibiotics were increased recently, and he is reacting to increased germ die-off. (Called a Jarisch-Herxheimer reaction, or herx for short.) He was draggy for much of the day, but he was in good spirits, and he did GREAT reading his story! I was really proud of him, especially given the circumstances.
Some impressions...
A tent was set up in advance, which was definitely necessary, as it rained much of the time. A row of tables at one end offered handouts, videos, Lyme magazines and books could be had, etc., and I left about 10 Lyme pins out, money to go to Dr. Jones, and they sold in about 10 minutes!
People were there from Fl, MA, RI, NH, NJ, MD, and CA, and other states, and there were posters naming other states who wanted their voices heard. Over 200 people were in attendance.
Brooke Landau acted as MC. She works for E! Entertainment and was interviewed for the Today show a year ago. She'd had a tough case of Lyme paralysis, and was eventually "jump started" toward better health with a month of hyperbaric oxygen treatments. She mentioned that her parents had the financial means to do anything to get her well (and spent over $250,000 doing it), but money means nothing if the research isn't there to give direction, and if the doctors aren't there to administer proper treatment.
Dr. Joseph Burrascano spoke about the complexities of diagnosing Lyme, and how the testing is so flawed. He said that the reason some labs (like Quest) don't report the results of the Western Blot in more detail (which would help in diagnosis) is because they must go by the directions on the test kit they are using. Other labs that don't use that particular kit can report more thoroughly. He mentioned that DNA tests are admissible as evidence in court, yet not accepted for Lyme diagnosis.
Pat Smith, who heads the Lyme Disease Association, spoke poignantly about her own daughter's case. I hadn't heard the details of her story before. Her daughter's symptoms had worsened to where she was having all-day seizures, yet they still no diagnosis. She finally curled up in a fetal position one day, and they thought she would die. She was finally treated for Lyme, and as an adult she now works for a peer-reviewed medical journal. Pat had vowed never to let another family go through advocating for a Lyme patient alone, as she'd done. She also said that parents are never doubted if they say their children have cancer or diabetes, compensations are willingly made, but if you say Lyme, educators are suspicious and reluctant.
Social worker Sandy Berenbaum spoke about the importance of having educational support for children with Lyme, and how hard it can be to get that at this time, since so many doubt that severe or chronic Lyme even exist. She mentioned that long-term antibiotics are used to treat acne and TB and other illnesses, and are put into cattle feed when the cattle aren't even sick, and no one questions that use, but the Infectious Disease Society complains that docs who use long-term antibiotics on sick patients may create resistant bacterial strains.
CT Attorney General Blumenthal spoke about the need to return to case reporting by labs, not doctors, and cited statistics that showed the numbers for CT plummeted when the labs no longer had to report. He also mentioned that lower numbers means less money is allocated from the federal government for education and research. He is advocating for a digital method to report confirmed cases, making it easier for docs and labs to comply.
Dr. Jones spoke only briefly to say thank you and to encourage continued support over his medical board case. He said he is fighting the medical board charges (that he prescribed antibiotics over the phone, contrary to the "accepted atandard of care") because he feels a sense of mission to continue to help children sick with Lyme disease. He also encouraged everyone to attend the next hearing, which is June 22.
The kids spoke last. The young children were sweet and spunky, and the teens, who were more
literate and introspective, were chilling and heart-wrenching, to me. Many of them have lost much of their childhoods to this disease. Some expressed thankfulness that they weren't worse off, or had gained insight into what was important in life. Others mentioned that they were so used to being ill that they didn't
realize what was missing until they began to get well. Sad that young children are so acquainted with the vocabulary of disease, like "intravenous" and "misdiagnosis."
Jake spoke next to last. We were both surprised at how deep his voice is sounding when he projects! He spoke about recovering so much that he was able to participate in the Ya-Ya Walk Against Lyme, and walked 46 miles in April. The audience went "whoa!" because most of them were either patients or parents of sick kids, and they know how debilitating the disease is. Many stopped to thank him afterward, or share bits of their own stories.
I met several people that I only knew through cyberspace. Lots of media were there -- hoping this gets good coverage.
There is also an article about severe Lyme in today's New York Times HERE . A very welcome piece, from a newspaper that has run more than one article denying that there is any such thing as severe or chronic Lyme.
Thanks for the update Shaz. All this continues in my thoughts and prayers. Wow....bet the rally was a tearjerker, huh? Glad to hear folks are rallying.....things happen at the grassroots. You all ARE making an impact and a difference for the future.
I contracted Lyme Disease in 1990 and I have never felt the same since. I immediately began having arthralgias & extreme fatigue. Fortunately, I had a good doctor who diagnosed it and I spent several months on antibiotics. I had a tick bite 6 weeks prior to the symptoms, but no bull's eye rash.
Unfortunately, the antiobiotics made me sick as well, and when I went to another infectious disease doctor, he said he didn't think I ever had Lyme Disease in the first place.
Duh. Now I see why.
I got better for about 8 years, then began having the same symptons...extreme fatigue, arthralgias. When I went back to the Infectious Disease doctor (the other doctor was now in a different city), I told him I thought I was having a reoccurance of the Lyme's. He again reiterated that he didn't think I ever had it, did a bunch of tests, and told me I had Fibromyalgia. So now I live with that.
Who knows what the heck I have. I'm afraid to take antibiotics again since I got so sick from them last time (pseudomembranous colitis) so I ache, and I'm tired. All the time. It has changed my life. I can barely remember feeling good now.
I'm all for better testing that can prove Lyme's Disease when one has it. I'm also all for early, aggressive treatment. When I had it, in Macon, Georgia, another girl that I worked with had it as well. We both had IV antibiotics. I think that's what the medical profession has balked at...since there's a test that is basically hit or miss (as you know, if you don't get tested at exactly the right time, it won't show up in your blood system), they don't like prescribing antibiotics.
Thanks for bringing awareness to this. I hope you and your son do well.
Don't worry, Shell, a lot of Lyme folk are taiking issue with the quiz. I can get 100% on it, but there are a lot of "buts" in my answers. Like...
#2.) True or false: Lyme disease is contagious. The correct answer is "false," BUT there is mounting evidence that babies can be infected by mothers in utero. There is also the possibility that Lyme is being passed from mother to baby via breastmilk or between sexual partners (spirochetes have been cultured in breastmilk, semen, and vaginal secretions), but the hard evidence is still out on that.
#3 is important, though -- once bitten, you might, but might not, see symptoms for weeks or even months. In some cases, no noticeable symptoms for years.
#5.) True or False: Antibiotics often fail to cure lyme disease. The key word here is "often." They want you to say "false," that the vast majority of cases are treated early and resolve readily. That is correct. However, THOUSANDS of people have gone on to have real problematic, chronic illness, especially those who were initially treated with only the short course of antibiotics recommended by the Infectious Diseases Society of America. How "often" is often enough?
#6.) True or False: If complications from Lyme disease develop, they are usually permanent. The answer is "false," that even late-stage disease often responds well to antibiotics. But even they say, "In some cases, patients may have long-term or chronic problems, such as arthritis, but this is fairly uncommon." The problem is, a LOT of people are being turned away from being re-treated with antibiotics by docs in the IDSA camp. We are told we no longer have Lyme, we've been treated for Lyme, and now have "post-Lyme auto-immune syndrome," even though the symptoms are the same as when they were willing to call it Lyme. And how many people actually fit the "fairly uncommon" scenario of long-term chronic disease? We don't know -- the CDC isn't counting them.
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coolchef1248 @adelphia.net
my dancing friend
i wish i could be there but i have a nice lime green golf shirt i will wear on fri.
wish there was more i could.
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shazdancer
Thanks, chef!
And thanks, everyone, for keeping the rally in your thoughts and prayers tomorrow.
AND...
...I finally got the information back about we did on the Ya-Ya Walk Against Lyme Disease. Hard to get everyone to communicate, since it was all done by email at a very busy time of year. But the results are:
OUR TEAM WON!!!
The other team will need to fork over about $150 total to a Lyme cause. I call that a WIN for everybody. In addition, my son "Jake" and I were able to give over $450 in pledges and donations to the Charles Ray Jones Defense Fund and the LymeAid4Kids fund.
I am touched by the caring of everyone who participated, both from the Ya-Ya board who walked, and from those of you here who donated. I don't want to name you all, you'll might get solicited to death, but you and I both know who you are, and I am humbled and grateful.
See if we make it onto the news tomorrow and Saturday morning...
Shaz
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shazdancer
Just got back from the rally last night, and wanted to tell you how it went...
I truly had a great time, and felt like good information was shared. I thought it was so important, that I brought son Jake along. He spoke and shared his story. Hey, if he's having trouble learning history, maybe he can learn something making a little history!
It was very tough getting Jake to wake up that morning, as his antibiotics were increased recently, and he is reacting to increased germ die-off. (Called a Jarisch-Herxheimer reaction, or herx for short.) He was draggy for much of the day, but he was in good spirits, and he did GREAT reading his story! I was really proud of him, especially given the circumstances.
Some impressions...
A tent was set up in advance, which was definitely necessary, as it rained much of the time. A row of tables at one end offered handouts, videos, Lyme magazines and books could be had, etc., and I left about 10 Lyme pins out, money to go to Dr. Jones, and they sold in about 10 minutes!
People were there from Fl, MA, RI, NH, NJ, MD, and CA, and other states, and there were posters naming other states who wanted their voices heard. Over 200 people were in attendance.
Brooke Landau acted as MC. She works for E! Entertainment and was interviewed for the Today show a year ago. She'd had a tough case of Lyme paralysis, and was eventually "jump started" toward better health with a month of hyperbaric oxygen treatments. She mentioned that her parents had the financial means to do anything to get her well (and spent over $250,000 doing it), but money means nothing if the research isn't there to give direction, and if the doctors aren't there to administer proper treatment.
Dr. Joseph Burrascano spoke about the complexities of diagnosing Lyme, and how the testing is so flawed. He said that the reason some labs (like Quest) don't report the results of the Western Blot in more detail (which would help in diagnosis) is because they must go by the directions on the test kit they are using. Other labs that don't use that particular kit can report more thoroughly. He mentioned that DNA tests are admissible as evidence in court, yet not accepted for Lyme diagnosis.
Pat Smith, who heads the Lyme Disease Association, spoke poignantly about her own daughter's case. I hadn't heard the details of her story before. Her daughter's symptoms had worsened to where she was having all-day seizures, yet they still no diagnosis. She finally curled up in a fetal position one day, and they thought she would die. She was finally treated for Lyme, and as an adult she now works for a peer-reviewed medical journal. Pat had vowed never to let another family go through advocating for a Lyme patient alone, as she'd done. She also said that parents are never doubted if they say their children have cancer or diabetes, compensations are willingly made, but if you say Lyme, educators are suspicious and reluctant.
Social worker Sandy Berenbaum spoke about the importance of having educational support for children with Lyme, and how hard it can be to get that at this time, since so many doubt that severe or chronic Lyme even exist. She mentioned that long-term antibiotics are used to treat acne and TB and other illnesses, and are put into cattle feed when the cattle aren't even sick, and no one questions that use, but the Infectious Disease Society complains that docs who use long-term antibiotics on sick patients may create resistant bacterial strains.
CT Attorney General Blumenthal spoke about the need to return to case reporting by labs, not doctors, and cited statistics that showed the numbers for CT plummeted when the labs no longer had to report. He also mentioned that lower numbers means less money is allocated from the federal government for education and research. He is advocating for a digital method to report confirmed cases, making it easier for docs and labs to comply.
Dr. Jones spoke only briefly to say thank you and to encourage continued support over his medical board case. He said he is fighting the medical board charges (that he prescribed antibiotics over the phone, contrary to the "accepted atandard of care") because he feels a sense of mission to continue to help children sick with Lyme disease. He also encouraged everyone to attend the next hearing, which is June 22.
The kids spoke last. The young children were sweet and spunky, and the teens, who were more
literate and introspective, were chilling and heart-wrenching, to me. Many of them have lost much of their childhoods to this disease. Some expressed thankfulness that they weren't worse off, or had gained insight into what was important in life. Others mentioned that they were so used to being ill that they didn't
realize what was missing until they began to get well. Sad that young children are so acquainted with the vocabulary of disease, like "intravenous" and "misdiagnosis."
Jake spoke next to last. We were both surprised at how deep his voice is sounding when he projects! He spoke about recovering so much that he was able to participate in the Ya-Ya Walk Against Lyme, and walked 46 miles in April. The audience went "whoa!" because most of them were either patients or parents of sick kids, and they know how debilitating the disease is. Many stopped to thank him afterward, or share bits of their own stories.
I met several people that I only knew through cyberspace. Lots of media were there -- hoping this gets good coverage.
regards,
Shaz
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coolchef1248 @adelphia.net
my dancing friend
thanks for shareing
my love to your little one
how brave he is
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shazdancer
Coverage seems to have stayed on the local level, but here's a few links:
Connecticut Fox News Video
Danbury News-Times
Ridgefield Press
There is also an article about severe Lyme in today's New York Times HERE . A very welcome piece, from a newspaper that has run more than one article denying that there is any such thing as severe or chronic Lyme.
-- Shaz
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I Love Bagpipes
Thanks for the update Shaz. All this continues in my thoughts and prayers. Wow....bet the rally was a tearjerker, huh? Glad to hear folks are rallying.....things happen at the grassroots. You all ARE making an impact and a difference for the future.
Much love..
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dmiller
Some nice press coverage there -- even if it was just local.
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Robes
Shaz,
Thanks for the info.
I contracted Lyme Disease in 1990 and I have never felt the same since. I immediately began having arthralgias & extreme fatigue. Fortunately, I had a good doctor who diagnosed it and I spent several months on antibiotics. I had a tick bite 6 weeks prior to the symptoms, but no bull's eye rash.
Unfortunately, the antiobiotics made me sick as well, and when I went to another infectious disease doctor, he said he didn't think I ever had Lyme Disease in the first place.
Duh. Now I see why.
I got better for about 8 years, then began having the same symptons...extreme fatigue, arthralgias. When I went back to the Infectious Disease doctor (the other doctor was now in a different city), I told him I thought I was having a reoccurance of the Lyme's. He again reiterated that he didn't think I ever had it, did a bunch of tests, and told me I had Fibromyalgia. So now I live with that.
Who knows what the heck I have. I'm afraid to take antibiotics again since I got so sick from them last time (pseudomembranous colitis) so I ache, and I'm tired. All the time. It has changed my life. I can barely remember feeling good now.
I'm all for better testing that can prove Lyme's Disease when one has it. I'm also all for early, aggressive treatment. When I had it, in Macon, Georgia, another girl that I worked with had it as well. We both had IV antibiotics. I think that's what the medical profession has balked at...since there's a test that is basically hit or miss (as you know, if you don't get tested at exactly the right time, it won't show up in your blood system), they don't like prescribing antibiotics.
Thanks for bringing awareness to this. I hope you and your son do well.
hugs,
Robi
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Shellon
Interesting quiz on this link, Shaz.
I failed every question and would bet many would get many incorrect.
http://www.cbsnews.com/stories/2006/06/09/...in1698407.shtml
Quiz in on right midway or so down.
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shazdancer
Don't worry, Shell, a lot of Lyme folk are taiking issue with the quiz. I can get 100% on it, but there are a lot of "buts" in my answers. Like...
#2.) True or false: Lyme disease is contagious. The correct answer is "false," BUT there is mounting evidence that babies can be infected by mothers in utero. There is also the possibility that Lyme is being passed from mother to baby via breastmilk or between sexual partners (spirochetes have been cultured in breastmilk, semen, and vaginal secretions), but the hard evidence is still out on that.
#3 is important, though -- once bitten, you might, but might not, see symptoms for weeks or even months. In some cases, no noticeable symptoms for years.
#5.) True or False: Antibiotics often fail to cure lyme disease. The key word here is "often." They want you to say "false," that the vast majority of cases are treated early and resolve readily. That is correct. However, THOUSANDS of people have gone on to have real problematic, chronic illness, especially those who were initially treated with only the short course of antibiotics recommended by the Infectious Diseases Society of America. How "often" is often enough?
#6.) True or False: If complications from Lyme disease develop, they are usually permanent. The answer is "false," that even late-stage disease often responds well to antibiotics. But even they say, "In some cases, patients may have long-term or chronic problems, such as arthritis, but this is fairly uncommon." The problem is, a LOT of people are being turned away from being re-treated with antibiotics by docs in the IDSA camp. We are told we no longer have Lyme, we've been treated for Lyme, and now have "post-Lyme auto-immune syndrome," even though the symptoms are the same as when they were willing to call it Lyme. And how many people actually fit the "fairly uncommon" scenario of long-term chronic disease? We don't know -- the CDC isn't counting them.
Regards,
Shaz
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Shellon
Naw, Shaz, not worrying, I was just pointing out that I'm sure the general public is unlearned about this disease.
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