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Educate & legislate: Sen. Charles Schumer on Lyme disease

Senator Charles Schumer in August, talking to the press about Lyme disease. His message is that we need to educate and legislate, and teach each other how to identify the symptoms early, before a treatable condition becomes a horrendous nightmare: chronic Lyme disease.

Schumer states that he is personally aware of the dangers of not treating Lyme disease immediately after contracting an infection. He says he was bit by a tick in the Hudson Valley, while inspecting a dam in the area. He sought medical treatment immediately, and says he was cured because it was caught early enough.

Senator Schumer’s comments, quoted from the Hudson Valley Insider, Aug 13, 2011:

“We need to bring Lyme disease and Babesiosis out of the weeds and better educate the public about how to keep themselves and their families’ safe,” said Schumer. “Lyme disease is a problem we’ve seen for decades, and Babesiosis is a recently growing issue in New York, but we haven’t done nearly enough at the federal level to tackle it. Tick-borne illnesses often go unnoticed for months, yet can be devastating for many victims and their families. The summertime brings about warm weather and school vacation, causing higher rates of infection in Ulster County and beyond.  The tick is a little pest that can pose a big problem, and this legislation would boost research of Lyme disease and Babesiosis and increase education and awareness in the community to better fight these diseases.”

Just for the record, Senator Schumer states that “20,000 Americans are infected with Lyme,” which is a misleading statement, and probably also a grossly underestimated number. Lyme experts estimate the number of infections to be approximately 10 times higher, more like 200,000 annual cases. Mangled facts aside, it’s always good to hear and see  an influential politician speaking out for Lyme awareness.

Educate and legislate!




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Healing from Lyme - Part 2

Before receiving the correct diagnosis for Lyme and coinfections, a dermatologist had put me on Prednisone to try and control my severe skin rashes. This was a nearly fatal mistake on his part. It marked a crisis point in my illness. I also received lectures by this doctor about how I “really should stop scratching myself raw while I was sleeping.” I wasn’t sleeping, and I knew he was wrong. The skin on my body wasn’t opening up due to scratching it. It was infuriating not to be heard.

He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.

A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.

In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.

We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.

That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.

Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.

During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.

Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.

I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.

In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.  


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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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Dr Charles Ray Jones: upcoming interview

Coming soon: a very special interview with renowned Lyme expert Dr Charles Jones of Connecticut. Dr Jones celebrated his 80th birthday last month, and he continues to treat chronically ill patients. His life and work is a testament to caring and courage.

Here are a couple of links to help you read up on Dr Jones:

Dr Charles Ray Jones homepage
The State of Connecticut vs. Dr Charles Ray Jones - A Hangin' In Hartford - article by Rick Vassar, April 17, 2007

Please note: This interview will be posted for free access to everyone - not just LDRD members. As always, we thank our members for your support, which enables us to keep conducting and posting these interviews.
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Alternative Lyme treatments

A friend asked for some advice about her Lyme protocol. She doesn't want to take antibiotics and would like to attempt an all-natural Lyme protocol.

I reminded her that I don't give advice. I'm an editor, not a doctor, and besides, it seems to me that depending on what stage of the disease you have, the symptoms of Lyme and the specific quirks of our immune systems truly complicate the challenge. The more people I interview about their experience with Lyme and its co-infections, the more I find out that I don't know. You've heard that old saying about the moment you recognize that you don't know anything is the beginning of wisdom? It's like that.

Although many of the Lyme-aware doctors we've interviewed for the "Interviews with Experts" series prescribe antibiotics for Lyme disease treatment, many people dealing with this multistage illness have incorporated other protocols into their routine at one point or another. Herbal tinctures, nutritional supplements and oxygen therapy are good examples of alternative or additional treatments, and I've had reports of excellent results with various combinations of these. Rife therapy has reportedly helped a lot of Lyme patients as well.

I've written about Dr Lee Cowden's herbal protocol in a special issue about Lyme protocols in the Townsend Letter, and he's featured in our Experts series. I'm interested in hearing more about the results of Dr Richard Horowitz's protocol, because he incorporates some of the Cowden herbs, and we're looking forward to adding his voice to our series.

I told my friend that the best advice I could offer is to tune in to the experts, and also listen to a catalog of stories about people from all walks of life, rich and poor, old and young, who have battled the tiger and now live vital, post-Lyme lives. I believe everyone has something to teach us, and that everyone is at least partially right. It's our job to decipher what's right, and what works, for us on our individual healing journeys.

I have had profound results from Dr Cowden's protocol. However, when I was first diagnosed my doctor insisted that I take antibiotics, which I remained on for six months.

I'm moved by my friend's sincere quest to heal from Lyme without going the pharmaceutical route. So, I thought I'd post this question to you: Have you had significant and long-lasting results from purely herbal protocols, such as the treatments recommended by Dr Lee Cowden, or Herbalist Stephen Buhner?
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Expert Interview Series: Carol Fisch Part 2

We've just uploaded Part 2 of the interview with expert Lyme disease researcher, advocate and activist Carol Fisch. Adjunct Professor Emeritus of Laboratory Science, Carol discusses her experiences studying and teaching about the bacterial complex, Borrelia burgdorferi. Her students often ask her to give a simple explanation of Lyme. Below is a bit of her answer. For a more in-depth discussion please login and listen to the entire interview.

A simple explanation of Lyme disease in not possible, as Lyme is not a simple disease. It is not just an infection with Borrelia burgdorferi the causative agent of Lyme disease. We are dealing with an illness complicated by multiple infectious agents; many of them are immune suppressive.

The immune system has difficulty in detecting the organisms that cause Lyme due to multiple factors, not least of all, its ability to change shape in order to survive -- surely one of its best tricks.

From the moment the Borrelia burgdorferi complex enters the body, it has the ability to clock itself into our own DNA proteins. When hit by anything threatening its survival, it can go into cell wall deficient (CWD) stages or into the cyst stage, where it is protected from antibiotics and the immune system. An activated immune system, where the body is trying to find an enemy and can't, leads to reactivation of Herpes Virus 1 - 6, and auto immune issues.
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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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