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Hear it from Lyme experts

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.
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Rick's 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.
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Diet, exercise and sleep

Are you like me, a list-maker? Nothing satisfies like crossing something off your to-do list. Here's a list that I wrote for myself, but I haven't crossed anything off yet because I'm still doing them.

3 areas where you can help yourself while healing from Lyme disease:

1. Diet. Eat only healthy, whole organic foods whenever possible. Choose more fresh veggies, more alkaline foods. Read all packaged food and drink labels before you buy. I know that the mere mention of spaghetti and garlic bread makes you salivate, however, reduce (or eliminate) your intake of pasta and carbohydrates. They break down into sugar in your system. Sugar will feed the Lyme bacteria you're trying so hard to kill. Drink plenty of pure water, it will help you detoxify and stay alert. Drink green tea instead of coffee - you have no tolerance for coffee now anyway.

2. Exercise. Yeah, I know. You're too pooped to pop. Your eyelids suddenly gained five pounds each and came slamming down like little garage doors. However, the top Lyme experts recommend daily exercise...to help increase your energy level. That's right! Run, dance, ride a bike. Walk. Jump on your mini-trampoline. Most Lyme patients feel about as strong as melted butter. Build muscles. You'll gain strength, and being strong will also build your confidence. Unless you're in an acute stage, start sweating. Every Lyme patient tells me that regular exercise makes them feel better, even when they felt so wobbly they could barely manage to drag themselves around the block.

3. Sleep. While you're deeply snoozing, each one of your cells is being repaired and replaced with a new healthy cell. You need more rest than you think. Who cares if you need 10, 11, 12 hours of sleep? It takes what it takes. Go to bed by 10 pm. If you can't sleep, meditate. Meditate anyway. It helps you gain perspective. Then first thing upon awakening, take a shower (dry brush first, to help slough off icky toxins excreted during the night). Brew a cup of hot green jasmine tea. Sip while sitting in the morning sun. Stretch. Yawn. Pet your cat. Hug your significant other. Breathe deeply. Give thanks.

Lyme Expert Interview Series.
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Waiting room - Lyme story

I was sitting in the crowded, stuffy waiting room, when the guy seated across the aisle started talking.

"I got a rash all over my chest," he said to no one in particular. "They gave me the wrong blood pressure medicine," he continued. "Can you believe that? I can't sleep, it itches so bad." He went on explaining the details of his story and the painful rash, eventually reaching up as if to unbutton his shirt to prove it. I buried my nose in my magazine. The man stopped, looked around to see if anyone was listening. No one was. He leaned toward me. "What's wrong with you?" he said. "You don't look sick."

My long skirt hid the white gauze bandages wrapped around both shins from ankle to knee. Beneath the gauze, the skin on my legs was hamburger from a mysterious rash that had been getting worse over the course of the past eight months. I'd been practically living on an alkaline diet, including lunches of delectable dandelion greens, and downing numerous turmeric capsules, since a holistic doctor had told me that I had eczema. I didn't drink, smoke, and I could count on one hand the times I'd taken antibiotics in my entire lifetime. I wasn't the type to get eczema, and that diagnosis had taken me by surprise. Even so, I religiously followed the doctor's suggestions. Still, I'd had no luck with the nasty rash. When the pain became so vicious that I could no longer even walk, my boyfriend drove me to the ER. Before walking into the waiting room, I'd spent the weekend on IV antibiotics. The ER docs informed us that I had almost died from a staph infection on the verge of going septic.

The man may not have noticed the cane leaning next to my purse. I smiled weakly. "I don't know," I shrugged. He narrowed his eyes, as if I was withholding something he deserved to know. Then he nodded and sat back.

My heart leaped at odd intervals, like a fish jumping in a shallow stream, making it hard to catch a deep breath. The one fan circulating in the room didn't do much to relieve the stuffiness. The dull headache I'd had for a week seemed worse under the florescent lights and the blaring TV high on the wall. An attendant in a green tunic appeared from the hallway and glanced at her clipboard. When she called my name, I stood and steadied myself with the cane and proceeded to walk as well as I could toward the hall. Vertigo gripped me, making me lose my balance. I almost bumped into the knees of the man with the rash. "M.S.," he muttered.

I stepped on the scale in the hall. The attendant adjusted it and recorded my weight. In the doctor's office, she took my blood pressure, handed me a hospital gown and left the room. I sat on the stainless steel table under the glare of the florescent lights, and waited again. So this is what public health care looks like, I thought. What was wrong with me? I had always been healthy, was always the one to choose carrot sticks over potato chips. On top of that, I was happily in love, and even starting a new business. In a million-zillion years, I never dreamed I'd be in this position. But here I was, in a small California coastal town, in the middle of my life, in such a weakened state that I could barely recognize the thoughts swimming through the thick fog that had descended in my brain.
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Diagnosing Lyme: Lies & half-truths

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.
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NY Times article on Lyme disease

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.
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Beating Lyme

Before Karol, a diagnostic technician, received a correct diagnosis for Lyme disease, she saw 14 doctors over a four year period. One after the other, these well-educated (though ignorant about Lyme) physicians tested her for many conditions. Karol lives in Texas, and according to the region's doctors, "you can't get Lyme in Texas." So, they searched for the cause of Karol's pain and sickness. Early on, she did get tested for Lyme, but since the test was negative it was ruled out and forgotten. She could have a brain tumor, they suggested. She might have multiple sclerosis. Whatever the reason for her seizures and dizziness, the doctors never suspected Lyme.

One day, she happened to catch a nurse practitioner on the television news, talking about the difficulty of diagnosing Lyme disease. Listening to Ginger Savely, FNP, Karol made the decision to go and see her. "I wasn't very optimistic," says Karol, about receiving a diagnosis. After all, it had been four years. When she did get positively diagnosed for Lyme and began antibiotic therapy, she was thrilled. "That's weird, I know, to be so happy about having a disease," she says. However, the affirmation gave her the strength to fight it. Like so many of us, she found the experience of not-knowing, for so many years, to be almost as debilitating as the disease itself.

Karol now describes herself as 95% better. Listening to her story is both familiar and uplifting. She's a testament to patience and persistence through suffering and confusion. She talks about the ways that Lyme changed her life. Her attitude is upbeat, and she believes that positive thinking has a definite place in her personal healing journey.

LDRD members can login and listen to Karol's story.
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Broccoli sprouts for healthy healing

Fresh organic vegetables, fruits, nuts and seeds are good for you (have you heard?). Raw food etox diet and chronic Lyme ">diets have been used successfully in curing and easing the pain of many types of chronic illnesses. However, before you fill your plate with only raw ingredients, you should ask your doctor (or better yet, a nutritionist well-versed in Lyme disease) if you're at a stage where eating more raw foods could help boost your healing energy. One naturopath I spoke with advised that during an acute stage of Lyme, raw foods may be too hard for your body to digest. He did suggest that in later stages of Lyme, the enzyme rich foods would be quite beneficial. Sprouts, however, got a big 'thumbs up' at any stage of Lyme.

We're investigating the varying opinions on the benefits of raw food in a healthy healing diet. Since this is such a big subject, let's start small. Consider the lowly sprout. You know how tiny seeds, jammed with nutritious compounds, grow into scrumptious vegetables. Sprouted veggie seeds such as alfalfa, clover, and radish can contain many times the value of the mature veggie.

So which is better for you? Broccoli sprouts or mature broccoli? A study of the tiny, peppery-flavored broccoli sprouts done in 1997 at Johns Hopkins discovered that they contained 20 times more sulforaphane than mature broccoli. Both the sprouts and the fully-grown vegetable (which, by the way, we love steamed with a spot of Bragg's) contain high levels of sulforaphane, a long-lasting antioxidant with anti-bacterial and anti-cancer qualities. Be an organic gardener and grow your own baby veggies. Broccoli sprouts are easy to grow right in your own kitchen. Eat them around their peak of potency -- when they're about three days old.

Whether you go raw or not, it's always a good idea to add more fruits and vegetables to your diet. Eat more broccoli and other cruciferous veggies, in order to benefit from sulforaphane. Write these tasty foods on your grocery list: Bok choy, Brussels sprouts, cabbage, cauliflower, collard greens, kale, kohlrabi, mustard greens, turnip, radish and watercress.
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Herbs for Lyme


I recently got the opportunity to talk with Dr. Lee Cowden about using herbs for Lyme. His core Lyme herbal protocol, which he is continuously refining, has helped so many Lyme sufferers, including our editor (that would be me). I'll post the interview soon in our members' area so you can listen to the conversation. Dr. Cowden is one of my heroes in the Lyme wars, particularly because he devotes a great deal of his time teaching other physicians how to diagnose and recognize Lyme in their patients. I told him I would like more information on two of the herbal remedies he uses. In particular, Enula and Serrapeptase.

Enula is used for addressing at least one of several common Lyme co-infections. The powerful antimicrobial defense tincture contains an extract of elecampane. Nasty pathogens such as microfilaria and worms gang up to create the co-infection Babesia, which is, unfortunately, more the rule rather than the exception in many Lyme patients. Many of doctors I talk to refer to ticks as little sewage plants; whatever icky sludge they contain gets dumped into our bloodstreams when we're bitten.

Serrapeptase is a proteolytic enzyme, derived from silkworms, who use it to dissolve their chrysalis. Enzymes dissolve organic matter such as cysts and inflammation. They're often used in treating rheumatoid arthritis, even as an alternative to steroids and ibuprofen. Such a potent anti-inflammatory agent can be very useful in keeping your knees happy, and reducing the stress from arthritis pain. However, with enzymes, timing is everything. Take Serrapeptase between meals, leaving at least an hour on either side of eating. Do this so that the enzymes won't use up their healing power by digesting your food, instead.

Listen to the interviews with Dr. Cowden and other Lyme specialists.
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20,000 cases? Sorry, you're wrong

Dear ABC Good Morning America,

Thank you for running the story on Lyme disease. However, I would like to challenge your reporters on one point. The number of new cases of Lyme per year is said by Lyme specialists to be ten to forty times higher than the 20,000 quoted by the CDC, and the number used in your report. Gross misdiagnosis and under-diagnosis is due in part to the notoriously inaccurate tests for Lyme that are currently in use by most infectious disease doctors in the US. These tests are the Western Blot and the ELISA.

The Lyme compound consists of the spirochetal Borrelia bacteria, plus any number of mycoplasma parasites and other pathogens. This compound is a particularly stealth bacteria that is able to evade the body's immune system, therefore protecting itself from the attack of antibiotics by drawing up a shield around itself, and hiding in various cyst forms throughout the patient's body and brain. The common tests for Lyme do not account for the sophisticated nature of this bacteria, according to researchers at the University of New Haven, Dr. Alan MacDonald and Dr. Eva Sapi.

Another reason for the misdiagnosis is the fact that no two Lyme patients present symptoms in the same way. In addition, it is not known how long the bacteria may lie dormant.

The irksome fact that the process of writing the IDSA treatment guidelines have been found to be in violation of the law has created quite a stir with patients of this devastating disease. The most profound problem is the existence of two standards of care for Lyme, which directly affects patients' health insurance and coverage of long-term antibiotics. ILADs physicians have told me that there are thousands of scientific models proving that Lyme can go chronic if undertreated or left untreated. The IDSA has ignored that scientific evidence. This is the heart of the Lyme debate.
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Lyme story airs!

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.
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Good Morning America, where's the Lyme story?

Where's the story? I know I wasn't the only one who was sorely disappointed to see that Good Morning America did not air the Lyme segment. Let's give them the benefit of the doubt, and assume that due to a programming snafu, they rescheduled. Please use this link to the ABC News contact form. Let them know that you - and your family and friends - all want to see it.
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Lyme is making headline news

A book and a film. How many times have you read a book, or seen a film, that shook your world view, opened your eyes, that made you take a second look at something you thought you understood. As a smart, sensitive person you've probably had that experience all throughout your life. Now is the time to pick up (and share) a phenomenal new book and go see a mind-expanding documentary film. Both deal head-on with the controversy surrounding the growing epidemic of Lyme disease. Be sure to watch the coverage on Good Morning America, ABC News, on Thursday July 3. It's important to let them know you're glad to see a story about Lyme on the mainstream news! Post your responses to their discussion on their website: http://abcnews.go.com/gma

Cure Unknown: Inside the Lyme Epidemic, is science journalist Pamela Weintraub's new book about her family's innocent decent into the living hell of Lyme, their tribulations and subsequent conquest over this grueling disease. According to Kaja Perina, editor in chief of Psychology Today, "This is an important and unforgettable book, destined to make a lasting contribution to the field of investigative health journalism.”

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.
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Lyme disease controversy on Good Morning America, ABC TV

Lyme disease controversy to be discussed on Thursday morning July 3, Good Morning America , ABC TV.

PLEASE DISTRIBUTE:

FROM DR. BRANSFIELD

Hi,
The movie Under Our Skin and the book Cure Unknown have awoken interest in the Lyme disease debate. Good Morning America will be showing a news story on the Lyme disease controversy Thursday morning between 7:30 and 8:00 AM. This came up on short notice and I was filmed late
yesterday. Someone from the opposing IDSA school of thought was also filmed in the Washington area.

Best,
Bob

Robert C Bransfield, MD, DFAPA, PC
225 State Route 35
Red Bank , NJ 07701
Phone 732-741-3263
Fax 732-741-5308
Email bransfield@comcast. net
Website www.MentalHealthand Illness.com
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