ILADS to train more doctors
10/03/08 19:38 Filed in: lyme Disease Doctor
As you are probably all too well-aware, we have a desperate need for more Lyme disease specialists. Driving or flying thousands of miles to see a Lyme literate doctor is not a luxury that most of us can afford.
According to this article in MediLexicon, the International Lyme and Associated Diseases Society (ILADS) has started a new training program to teach more doctors how to diagnose and treat chronic Lyme disease. With financial assistance from the New York-based Turn the Corner Foundation, the program aims to train 100 doctors over the next five years.
"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."
Many physicians are not aware of the complexities of tick-borne diseases, and patients with Lyme symptoms are too often misdiagnosed, under treated or simply dismissed. The disease now known in the medical community as the Great Imitator can be a superb mimic of a hundred other conditions, especially if it hasn't been treated correctly when in the early stage. This is due to the complex nature of the Lyme bacteria, which has the capacity to hide from the body's immune system in order to protect itself. Doctors who are trained to recognize and treat Lyme symptoms will help increase awareness of the disease.
The ninth annual ILADS 2008 conference will be held on October 18-19 in San Francisco. Entomologist Willie Burgdorfer, who discovered the Lyme bacteria we know as Borrelia burgdorferi or Bb, is scheduled to be the keynote speaker. Several hundred physicians from across the globe will be in attendance. For Lyme researchers and medical specialists who treat Lyme patients, the conference offers an opportunity to collaborate and learn about each others' work.
According to this article in MediLexicon, the International Lyme and Associated Diseases Society (ILADS) has started a new training program to teach more doctors how to diagnose and treat chronic Lyme disease. With financial assistance from the New York-based Turn the Corner Foundation, the program aims to train 100 doctors over the next five years.
"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."
Many physicians are not aware of the complexities of tick-borne diseases, and patients with Lyme symptoms are too often misdiagnosed, under treated or simply dismissed. The disease now known in the medical community as the Great Imitator can be a superb mimic of a hundred other conditions, especially if it hasn't been treated correctly when in the early stage. This is due to the complex nature of the Lyme bacteria, which has the capacity to hide from the body's immune system in order to protect itself. Doctors who are trained to recognize and treat Lyme symptoms will help increase awareness of the disease.
The ninth annual ILADS 2008 conference will be held on October 18-19 in San Francisco. Entomologist Willie Burgdorfer, who discovered the Lyme bacteria we know as Borrelia burgdorferi or Bb, is scheduled to be the keynote speaker. Several hundred physicians from across the globe will be in attendance. For Lyme researchers and medical specialists who treat Lyme patients, the conference offers an opportunity to collaborate and learn about each others' work.
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Send your doc to SF
09/16/08 21:33 Filed in: Lyme Disease Treatment
When I was receiving Lyme disease treatment in California, where I lived at the time of my diagnosis, my family doctor was a naturopath who had studied with ILADS physician Dr. Raphael Stricker and others with CALDA. I was extremely fortunate to have his expertise as he helped me battle the fight of a lifetime. In turn, he said he felt lucky to have the expertise, experience, and excellence of these Lyme specialists behind him.
Your doctor doesn't have to live in California to attend. People from all over the country are planning to go. Help us spread the word about the CALDA Lyme conferences coming up in San Francisco. To sweeten the pot, here's a way for him or her to get reimbursed for a portion of the cost:
From the CALDA website:
CALDA will reimburse up to $800.00 out-of-pocket expenses for any actively practicing MD, DO, ND, NP or PA in any state to attend the annual conferences put on by the International Lyme and Associated Diseases Society (ILADS) and the Lyme Disease Association (LDA). CALDA grants are limited and are only available to those qualifying professionals who are attending the conferences for the first time. Preference will be given to persons currently engaged in treating tickborne infections and who plan to attend both conferences.
The 2008 ILADS and LDA conferences will be held on October 17 – 19 at the Cathedral Hill Hotel in San Francisco. Please check the ILADS and LDA websites for details and to register at: www.ilads.org; www.lymediseaseassociation.org.
Your doctor doesn't have to live in California to attend. People from all over the country are planning to go. Help us spread the word about the CALDA Lyme conferences coming up in San Francisco. To sweeten the pot, here's a way for him or her to get reimbursed for a portion of the cost:
From the CALDA website:
CALDA will reimburse up to $800.00 out-of-pocket expenses for any actively practicing MD, DO, ND, NP or PA in any state to attend the annual conferences put on by the International Lyme and Associated Diseases Society (ILADS) and the Lyme Disease Association (LDA). CALDA grants are limited and are only available to those qualifying professionals who are attending the conferences for the first time. Preference will be given to persons currently engaged in treating tickborne infections and who plan to attend both conferences.
The 2008 ILADS and LDA conferences will be held on October 17 – 19 at the Cathedral Hill Hotel in San Francisco. Please check the ILADS and LDA websites for details and to register at: www.ilads.org; www.lymediseaseassociation.org.
How to find a Lyme doctor
08/20/08 17:07 Filed in: lyme Disease Doctor
Currently, there are two standards of treatment for Lyme disease. If you have Lyme symptoms, or suspect you may have Lyme, please contact a Lyme literate medical doctor, or LLMD. Go to the Lyme Disease Association doctor referrals page.
You'll need to register using your email address, and follow the simple directions to find a doctor near you. It doesn't take long and it's easy to do. If you need a Lyme specialist, we urge you to find one soon.
Infectious disease doctors (IDSA) may not have knowledge of Lyme disease, and may lack the experience that ILADS specialists can offer in diagnosing and treating Lyme. ILADS member Ginger Savely, RN, has treated over a thousand patients suffering with Lyme symptoms. She says "you can get better!"
If Lyme is left untreated it can be debilitating. The good news is you can get better. Find a doctor who knows how to diagnose and treat Lyme now.
You'll need to register using your email address, and follow the simple directions to find a doctor near you. It doesn't take long and it's easy to do. If you need a Lyme specialist, we urge you to find one soon.
Infectious disease doctors (IDSA) may not have knowledge of Lyme disease, and may lack the experience that ILADS specialists can offer in diagnosing and treating Lyme. ILADS member Ginger Savely, RN, has treated over a thousand patients suffering with Lyme symptoms. She says "you can get better!"
If Lyme is left untreated it can be debilitating. The good news is you can get better. Find a doctor who knows how to diagnose and treat Lyme now.
ABC covers the Lyme Debate
08/02/08 11:51 Filed in: Lyme Disease in the news
* Is Lyme disease an unrecognized epidemic?
* If left untreated, will it become chronic?
* Can Lyme be treated with long-term antibiotics?
Or do you believe, as IDSA docs do, that the Lyme epidemic is nonexistent? Is chronic Lyme disease all in the patients' head? Are long-term antibiotics dangerous?
These questions simmer at the heart of the great Lyme debate, which is played out every day in decisions made by IDSA doctors on one hand, and ILADS physicians on the other. The IDSA is currently reviewing its treatment guidelines.
Who's correct? Where do you stand? Anyone who has ever been doubted by their Infectious Disease doctor, and all of us whose lives are affected by Lyme will want to watch this three part story.
ABC News covers the Lyme controversy. Take a look. If you appreciate this report, please take a moment to call or email ABC and let them know. Our opinions as viewers matter to them.
Hear it from Lyme experts
07/25/08 23:41 Filed in: Lyme Disease Expert
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.
Rick's Lyme success story
07/23/08 12:37 Filed in: Lyme Success Story
Rick, an active sports-lover, was married and starting a family. He was a runner, a cycler and a swimmer. His northern California lifestyle was the type most people can only dream of. "I would water-ski, snow-ski, do anything I pretty much wanted to, looking back. Then I'd hang out with my family, get into the car on the fly, and still have energy on the weekends," he says.
One day he woke up with a frozen shoulder. He was diagnosed with Rheumatoid Arthritis. Although Rick had been tested for Lyme, the tests had come back negative. His RA doctor told him, "Lyme doesn't exist in California. It's probably not that. You just need to consider that you have arthritis. Then he added, right in front of my wife, 'you have to trust the experts to help make you better,'" says Rick. He laughed. "I'm in sales," he explains. "Whenever I hear somebody say 'trust me,' I know I'm going to get f****d."
His RA doctor recommended surgery, which he had. The pain was still unbearable. He was sent from doctor to doctor and no one knew what the problem was. He spent over $25,000 in medical tests without receiving any answers. He was placed on medications that never seemed to help, and only made things worse. At one point, he was popping sixteen Advil per day, eight in the morning and eight at lunch. At night, he self-medicated with wine. The entire time he was sick, he hid his painful symptoms from everyone he worked with, and never complained, even to his wife. But he wasn't getting better and knew he couldn't go on like that.
Finally, at his wife's suggestion, he realized that he had to trust yet one more doctor. He had Googled "Lyme + doctor" and found a clinic in nearby San Francisco. He walked into the office of ILADS physician Dr. Raphael Stricker. When Dr. Stricker told him he had Lyme, he was flooded with intense relief. After only three weeks of treatment, his symptoms began to disappear.
Rick now considers himself to be about 90% better, and he's been able to return to some of the activities he loves. How did having Lyme change his life? In so many ways, he says. Specifically, his empathy for other peoples' hardship and pain. "My family says I'm nicer now," he adds, laughing.
LDRD members, you can listen to Rick tell his entire story in the members area.
One day he woke up with a frozen shoulder. He was diagnosed with Rheumatoid Arthritis. Although Rick had been tested for Lyme, the tests had come back negative. His RA doctor told him, "Lyme doesn't exist in California. It's probably not that. You just need to consider that you have arthritis. Then he added, right in front of my wife, 'you have to trust the experts to help make you better,'" says Rick. He laughed. "I'm in sales," he explains. "Whenever I hear somebody say 'trust me,' I know I'm going to get f****d."
His RA doctor recommended surgery, which he had. The pain was still unbearable. He was sent from doctor to doctor and no one knew what the problem was. He spent over $25,000 in medical tests without receiving any answers. He was placed on medications that never seemed to help, and only made things worse. At one point, he was popping sixteen Advil per day, eight in the morning and eight at lunch. At night, he self-medicated with wine. The entire time he was sick, he hid his painful symptoms from everyone he worked with, and never complained, even to his wife. But he wasn't getting better and knew he couldn't go on like that.
Finally, at his wife's suggestion, he realized that he had to trust yet one more doctor. He had Googled "Lyme + doctor" and found a clinic in nearby San Francisco. He walked into the office of ILADS physician Dr. Raphael Stricker. When Dr. Stricker told him he had Lyme, he was flooded with intense relief. After only three weeks of treatment, his symptoms began to disappear.
Rick now considers himself to be about 90% better, and he's been able to return to some of the activities he loves. How did having Lyme change his life? In so many ways, he says. Specifically, his empathy for other peoples' hardship and pain. "My family says I'm nicer now," he adds, laughing.
LDRD members, you can listen to Rick tell his entire story in the members area.
Diagnosing Lyme: Lies & half-truths
07/17/08 17:19 Filed in: Lyme Disease Diagnosis
It irks me to see inaccurate info about Lyme on health-oriented blogs. For example, I just read the sentence: "Lyme is completely treatable. No need to panic," and now I'm really bugged. No, I don't want everybody to panic. However, it's just such unfounded casualness about Lyme that creates the illusion that one needn't seek a Lyme aware doctor's advice right away, at the first suspicion of Lyme symptoms or the presence of a tick bite. There is absolutely no evidence that the person making the claim has any awareness of just how dangerous, and multi-stage, Lyme can be when left untreated.
The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."
How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."
How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
NY Times article on Lyme disease
07/16/08 15:56 Filed in: Lyme Disease in the news
There's a lot to admire about Jane Brody's recent NY Times article on Lyme disease, A Threat in a Grassy Stroll. It will inform some who haven't ever heard of the disease (yes, they're out there), or people who had heard of it but know squat about it, such as my Aunt Louise, who called to offer her condolences after I was diagnosed. ("Unfortunately, nothing can be done, dear. Eating rosemary is supposed to help.") The article may even throw a wrench in the common nonsense that Lyme is "hard to get, and easy to cure," a myth that originally began where? With an article in the NY Times, by Gina Kolata.
Perhaps what I appreciate most about Brody's piece is that alongside the statistics and experts she quotes, she offers her own personal observations. After presenting the simplified version of the IDSA's and ILADS conflicting views on treatment, she says, "Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than 'official' diagnostic and treatment guidelines suggest." The article's meta-text is twofold. First: Don't believe everything you read. And second: Don't discount your own observations.
My problems with the article are fairly nit-picky, and my bias in support of ILADS makes me frustrated to see this global organization of highly-educated physicians and researchers referred to as "a nonprofit medical group," but okay, they are a nonprofit medical group. I also think it's a little weak on Brody's part to suggest the ISDA simply agreed to revise its Lyme treatment guidelines, since in fact the IDSA faced criminal charges of antitrust if they refused to do so. Furthermore, Eva Sapi, PhD, director of Lyme disease research at UNH, says that even 40% DEET wasn't strong enough to repel ticks when she and her students ventured out on their tick-collecting walks through Fairfield County, CT. She recommends permethrin-saturated clothing instead. And Dr. Sapi says that ticks have been known to transmit bacteria after only one or two hours -- not the 24 hours that Brody says the vile little critters need.
Some of these transgressions, even if they're small, can spread damaging half-truths to the overall message about Lyme. The truth is, it's a serious disease. Easy to get, and hard to cure. The lucky ones are cured following the simplistic guidelines of the IDSA. But the numbers of sick people who don't get better on that protocol tell a different story. In all, I have to say it's exciting to see good reporters talking about Lyme, bringing their own observations into the mix, and not simply mouthing the words of the CDC.
Listen to the experts themselves, and use your own good judgment.
Perhaps what I appreciate most about Brody's piece is that alongside the statistics and experts she quotes, she offers her own personal observations. After presenting the simplified version of the IDSA's and ILADS conflicting views on treatment, she says, "Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than 'official' diagnostic and treatment guidelines suggest." The article's meta-text is twofold. First: Don't believe everything you read. And second: Don't discount your own observations.
My problems with the article are fairly nit-picky, and my bias in support of ILADS makes me frustrated to see this global organization of highly-educated physicians and researchers referred to as "a nonprofit medical group," but okay, they are a nonprofit medical group. I also think it's a little weak on Brody's part to suggest the ISDA simply agreed to revise its Lyme treatment guidelines, since in fact the IDSA faced criminal charges of antitrust if they refused to do so. Furthermore, Eva Sapi, PhD, director of Lyme disease research at UNH, says that even 40% DEET wasn't strong enough to repel ticks when she and her students ventured out on their tick-collecting walks through Fairfield County, CT. She recommends permethrin-saturated clothing instead. And Dr. Sapi says that ticks have been known to transmit bacteria after only one or two hours -- not the 24 hours that Brody says the vile little critters need.
Some of these transgressions, even if they're small, can spread damaging half-truths to the overall message about Lyme. The truth is, it's a serious disease. Easy to get, and hard to cure. The lucky ones are cured following the simplistic guidelines of the IDSA. But the numbers of sick people who don't get better on that protocol tell a different story. In all, I have to say it's exciting to see good reporters talking about Lyme, bringing their own observations into the mix, and not simply mouthing the words of the CDC.
Listen to the experts themselves, and use your own good judgment.
Lyme story airs!
07/04/08 13:30 Filed in: Lyme Disease in the news
According to Brooke Landau, Lyme activist and TV news reporter, television stations listen and respond when they are deluged with requests from viewers to air stories about a specific topic. Viewers are their bread and butter. Please take the time to comment on the ABC website to let them know you appreciate the story they aired this morning about the documentary film, Under Our Skin. Here's my comment to them:
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.
Thank you, thank you for bringing this growing epidemic to light. However, as many have already noted, the majority of people suffering with Lyme disease never saw a tick bite, and never had the bull's eye rash. In addition, the tests for Lyme have what one physician refers to as "coin toss sensitivity," meaning that if you toss a coin, you get results that are just about as accurate as using the ELISA or the Western Blot for testing positive. According to ILADs physicians I have interviewed for the Lyme Disease Research Database, the CDC has a long history of ignoring scientific evidence for the existence of chronic Lyme disease. Thanks to CT Attorney General Richard Blumenthal, the IDSA is now being forced to review its Lyme disease treatment guidelines. People who are suffering with Lyme due to misdiagnosis, under-diagnosis, and simple ignorance have long been forced to become their own health advocates, often at a time in their lives when they are extremely sick. I applaud you for airing this segment on the Lyme controversy, yet I am disappointed to see that your reporters did not bother to investigate the accuracy of the numbers of new cases of Lyme reported each year. As someone else commented, that 20,000 quote is hideously underestimated. Next time, I hope you have the courage to quote numbers that are closer to the actual truth.
In the Lyme documentary Under Our Skin, filmmaker Andy Abrahams Wilson (Open Eye Pictures) exposes the cruel dismissal that the medical establishment frequently gives people who are sick and suffering with Lyme. The film opened in April at the Tribeca Film Festival in NYC. Andy is featured in the LDRD's interview series.