Lyme Disease Expert
Hear it from Lyme experts
07/25/08 23:41
Remember your second grade teacher telling you to use your 'thinking cap'? When I was in an acute stage of Lyme, searching for reputable sources of practical information online, I realized quickly that I was going to need to turn on my thinking cap when listening to people who meant well, but who weren't qualified medical experts. Where Lyme disease symptoms, diagnoses, and treatment are concerned, more information -- and unfortunately, more misinformation -- is becoming available every moment. Although forums and communities serve a noble purpose, and help reassure you that you're not alone, forums can also be a source of misinformation.
What you need more than anything, especially when you're weak, is to know that you can get better. I remember being so deathly ill (and also so ignorant about this disease), that I burst into tears of relief when my sister told me, over the phone, that a woman she knew had beaten Lyme, and was traveling, working, and living a perfectly happy life again. My symptoms were so painful, and my daily life and routines were at that time centered on Basic Survival 101. My world had shrunk to the point that I really couldn't even imagine living a 'normal' life again. Well, over the past three years since my diagnosis and treatment, my life has totally changed, but it's all for the better. As you may very well know, going through treatment, suffering Herx after Herx is not fun. It has never been easy. It's a slow road. I genuinely wish I could tell you there is a magic bullet that could set your life right again, or snap my fingers and make your pain disappear. However, there's no single pill that can do that for someone with an advanced stage of Lyme. Not yet. As you can hear our from our interviews with top Lyme disease research scientists, however, they are fervently devoted to finding a cure very soon. So keep your fingers crossed. When it happens, we'll tell you all about it!
Our mission here is to record real people's Lyme success stories, and interview world-class Lyme aware physicians so that you can hear them tell it like it is, and get the scoop directly. No mediators, no advertisers. This is the sort of meaty, practical information I hungered for when I first learned I had Lyme. We're grateful to be able to document all of these stories. Every one of our stories is important, each of them adds a small piece of the puzzle of Lyme and adds to our ability to heal. Listening to Rick's story, Karol's, and the others is one surefire way to fill your heart and mind with hope. And listening to the ILADS doctors and other medical practitioners in our 'interviews with experts' series is one very good way to learn, from reputable sources, how to get better. Because it may not be easy, but believe me, when you put on your thinking cap, as Ginger Savely, RN, who has treated a thousand Lyme patients at her clinic in San Francisco says: "You can get better!"
Become a member and get immediate access to the Expert Interview Series and the Success Stories.
What you need more than anything, especially when you're weak, is to know that you can get better. I remember being so deathly ill (and also so ignorant about this disease), that I burst into tears of relief when my sister told me, over the phone, that a woman she knew had beaten Lyme, and was traveling, working, and living a perfectly happy life again. My symptoms were so painful, and my daily life and routines were at that time centered on Basic Survival 101. My world had shrunk to the point that I really couldn't even imagine living a 'normal' life again. Well, over the past three years since my diagnosis and treatment, my life has totally changed, but it's all for the better. As you may very well know, going through treatment, suffering Herx after Herx is not fun. It has never been easy. It's a slow road. I genuinely wish I could tell you there is a magic bullet that could set your life right again, or snap my fingers and make your pain disappear. However, there's no single pill that can do that for someone with an advanced stage of Lyme. Not yet. As you can hear our from our interviews with top Lyme disease research scientists, however, they are fervently devoted to finding a cure very soon. So keep your fingers crossed. When it happens, we'll tell you all about it!
Our mission here is to record real people's Lyme success stories, and interview world-class Lyme aware physicians so that you can hear them tell it like it is, and get the scoop directly. No mediators, no advertisers. This is the sort of meaty, practical information I hungered for when I first learned I had Lyme. We're grateful to be able to document all of these stories. Every one of our stories is important, each of them adds a small piece of the puzzle of Lyme and adds to our ability to heal. Listening to Rick's story, Karol's, and the others is one surefire way to fill your heart and mind with hope. And listening to the ILADS doctors and other medical practitioners in our 'interviews with experts' series is one very good way to learn, from reputable sources, how to get better. Because it may not be easy, but believe me, when you put on your thinking cap, as Ginger Savely, RN, who has treated a thousand Lyme patients at her clinic in San Francisco says: "You can get better!"
Become a member and get immediate access to the Expert Interview Series and the Success Stories.
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Scientific evidence ignored
04/26/08 19:33
If you are struggling with late stage Lyme disease symptoms, the last thing you need is anyone telling you there is no such thing as chronic Lyme. Yet that is what doctors, many who seem genuinely interested in helping their patients, are doing.
Doctors who defend the IDSA's guidelines for the treatment of Lyme -- thirty days of antibiotic therapy -- as sufficient say there is no scientific evidence to prove that Lyme disease can enter a chronic stage. However, Ginger Savely, RN, FNP, who treats patients with Lyme, says that thousands of animal studies do offer scientific evidence that Lyme bacteria survive beyond the recommended one month course of doxycycline. Yet these studies are overlooked by the IDSA.
"Of course, we can't do the same kinds of experiments on humans as we can on animals. So just because we don't have the human studies out there, the IDSA always wants to ignore all the many, many animal studies that there are, basically just saying, well, those aren't people," says Savely.
Doctors who defend the IDSA's guidelines for the treatment of Lyme -- thirty days of antibiotic therapy -- as sufficient say there is no scientific evidence to prove that Lyme disease can enter a chronic stage. However, Ginger Savely, RN, FNP, who treats patients with Lyme, says that thousands of animal studies do offer scientific evidence that Lyme bacteria survive beyond the recommended one month course of doxycycline. Yet these studies are overlooked by the IDSA.
"Of course, we can't do the same kinds of experiments on humans as we can on animals. So just because we don't have the human studies out there, the IDSA always wants to ignore all the many, many animal studies that there are, basically just saying, well, those aren't people," says Savely.
Doc examines Lyme & Alzheimer's link
04/11/08 16:49
Lyme disease symptoms can look a lot like other diseases' symptoms, not the least of which is Alzheimer's. In late-stage, or tertiary stage of Lyme, the bug has infected the brain. It may be hard to distinguish between the symptoms of somebody with late-stage Lyme, and somebody suffering from Alzheimer's disease.
Such was the case of Paul Christensen, who was diagnosed with Lyme, treated, and then released from Stony Brook Hospital. Paul was a firefighter, yet he struggled for eight years with mental deterioration after his diagnosis of Lyme. Finally, he died due to Alzheimer's.
Paul's wife suspected that there was a strong link between her husband's diagnosis of Lyme and his death from Alzheimer's disease. If there was a connection, she was determined that other people should learn about it, in the event that it might help reduce their suffering. So, after Paul died she urged medical researcher Dr. Alan MacDonald to investigate her husband's case.
Dr. Alan MacDonald is a featured expert in the 'Interviews with Experts' series, which you can access here. In the 30 minute audio interview, he tells about the well-documented Christensen case, and he describes what he and other researchers are doing to understand the Lyme bug, so we can eradicate it.
Such was the case of Paul Christensen, who was diagnosed with Lyme, treated, and then released from Stony Brook Hospital. Paul was a firefighter, yet he struggled for eight years with mental deterioration after his diagnosis of Lyme. Finally, he died due to Alzheimer's.
Paul's wife suspected that there was a strong link between her husband's diagnosis of Lyme and his death from Alzheimer's disease. If there was a connection, she was determined that other people should learn about it, in the event that it might help reduce their suffering. So, after Paul died she urged medical researcher Dr. Alan MacDonald to investigate her husband's case.
Dr. Alan MacDonald is a featured expert in the 'Interviews with Experts' series, which you can access here. In the 30 minute audio interview, he tells about the well-documented Christensen case, and he describes what he and other researchers are doing to understand the Lyme bug, so we can eradicate it.