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Ginger Savely

Staying Lyme-free in an endemic region

"Almost everybody I know either has Lyme disease, or they know someone who is undergoing Lyme treatment," said my friend Dee, who moved to the Hudson Valley, NY just a few years ago. 

She'd been telling me about her favorite pastime, walking with her dog, Daisy, through the woods near her small house.

"Knock on wood, I haven't gotten it yet. It's kind of shocking how many people have, but honestly, I don't think I've ever even seen a tick out there," she added. I could tell she was amazed at her good luck. "But the fact that I haven't gotten sick doesn't seem to make me more cautious," she went on. "In fact, I feel sort of immune to it." She paused, considering this idea for a moment.

"Are some people just more susceptible than others?" she asked.

While silently giving thanks (and feeling relieved) that my friend remains happy and healthy, I explained what I've learned from Lyme experts regarding our susceptibility.

Ginger Savely, RN, tells us that in her experience observing and treating Lyme patients, it's true that some people tend to attract ticks, just as some of us are mosquito magnets, and some never get bit. Other medical professionals, such as Dr Cowden and the late Dr Joanne Whitaker, who have studied Lyme, its testing and treatment for a lifetime, claim that the Lyme bacteria can be found in body fluids, such as tears, sweat and semen. Pediatrician Dr Charles Ray Jones, who is nothing short of a hero in many of his colleagues and his Lyme patients' estimation, says he has treated very young children who were infected by their mother while in vitro.

"The problem with being Lyme-free while living in a place such as the Hudson Valley," explained Dee, "is that you lose your fear. You don't take the precautions you know you should because it just hasn't happened yet."

Here are some precautions to take, if you plan to venture outdoors in this beautiful spring weather. Be sure to check your dog, too.

To reduce the risk of Lyme disease:

• Wear light-colored clothing and preferably long pants and long sleeves when in places where ticks may be present. This helps in spotting ticks that may be on clothes. Tucking pants into socks is also a very good idea.
• Perform a tick check every day so ticks can be removed before they have a chance to feed and transmit pathogens they might be carrying. Research indicates that a tick has to feed for at least 36 hours before it can transmit pathogens such as the bacteria that causes Lyme disease.
• Consider the use of repellents if spending considerable time outdoors.

Source: New York State Health Department

PS: I asked Dr Eva Sapi, Director of Lyme Research at the University of New Haven, Connecticut, whether it was true, in her estimation, that a tick must be attached "for at least 36 hours before it can transmit pathogens," and she assured me there was no evidence to support that assertion.
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Find a Lyme doctor near you


Q: What should I do? I've had Lyme disease symptoms, but the time for early treatment has elapsed.

A: Contact a Lyme literate medical doctor near you. Please go to the Lyme Disease Association doctor referrals page.

Once you're on the LDA website, click on the link for "doctor referrals." Register using your email address. Once you've done so, follow the simple directions to find a doctor near you. The process doesn't take long and the directions are easy to follow. If you need a Lyme doctor, I urge you to find one as soon as possible.

You'll be asked whether you'd prefer a doctor who belongs to the International Lyme and Associated Diseases Society (ILADS). Keep in mind that Infectious disease doctors (IDSA) may not have the knowledge it takes to treat Lyme disease, especially when it has gone beyond the early stages. Infectious disease doctors may also lack the experience that ILADS specialists can offer in diagnosing and treating Lyme.

ILADS member and Registered Nurse, Ginger Savely, has diagnosed and treated over one thousand patients with Lyme symptoms. She is confident that with treatment, you can recover from Lyme disease.

Many experts agree that if Lyme is left untreated, or if it goes under-treated, the disease can be debilitating and even cause serious threats to health and well-being.

If you need help, please use the link above to find a doctor who knows how to diagnose and treat Lyme now.

And meantime, please take advantage of the work we've been doing over the past few years, collecting Lyme Success Stories. Listen to the Success Stories here on our website. Many of them are available for free. All we ask is that you sign up for our newsletter in order to hear them. LDRD members, who help make our work here possible, have access to many more stories, and we're adding new ones all the time. These people are so strong and enthusiastic, I love listening to them. They hail from all walks of life -- young, not-so-young, men, women and children. They will help you find the inner strength and confidence you need at this point. Some of them have specific information about how they healed from Lyme. They talk about how they found their Lyme doctors, they tell which medicines they took, and some describe their nutritional plans, exercise routines, and more.

When we're sick, we need encouragement. We need to hear from other people who've been down the same road. Nurse Ginger Savely told me, during our interview, that she fully believes that people can get better, when given the right treatment, even if they've suffered with Lyme symptoms for many, many years. She sees it happening every day in her San Francisco clinic.
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Support while detoxing

With all the talk about Swine Flu, there's an abundance of common sense about how to stay healthy making the rounds on the Internet, such as washing your hands regularly and supporting the immune system. Immune support is as central to keeping the flu bug away as it is in healing from Lyme disease. And one important step in keeping healthy is detoxification. Detox is part of the one-two punch in Lyme management (along with antibiotics) that RN Ginger Savely describes in our experts interview series. But what happens when you try to detox too quickly?

Anyone dealing with Lyme is painfully familiar with stressful "Herxheimer Reactions," which occurs when toxins - Lyme bacteria - in the body die off faster than the organs of elimination can handle. Learning how to manage Herxes is important yet tricky business. Essentially experienced as an increase in symptoms, Herxes can include nausea, headaches, brain fog, vertigo or mood swings, bringing more stress to an already stress-loaded system.

Some experts and patients say the Herx just comes with the territory, that it's unfortunately one of the crummy things that Lyme patients must endure in order to get better. However, others claim that painful Herxes are more likely to occur when the organs of elimination lack sufficient support. For example, Jean Reist, RN, claims that the intensity of a Herx can be reduced and in some cases eliminated altogether. How? By supporting the lymph system, an important part of the immune system and a major player in elimination. The lymph must be maintained in order to carry toxins away from the cells. An act as simple as drinking plenty of water each day and routinely jumping on a mini-trampoline can help move the lymph, and reduce the effects of a Herx.

The organs of elimination include the liver, the bowel, kidneys, skin and lungs. Yes, deep breathing, which is used in meditation and yoga practice, is a way to remove toxins from your lungs, so remember to support your body in healing by taking a deep relaxing breath.
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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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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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