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Common allergy med kills Lyme bacteria?

Encouraging news is spreading throughout the Lyme community. A northern California nonprofit called the Bay Area Lyme Foundation says that a common allergy medicine may help kill the Lyme bacteria. A new laboratory study shows that the antihistamine, loratadine (or as you might know it, Claritin), starves the Lyme bacteria by preventing it to gather manganese, which it evidently needs to harm the body. The study has so far proved Claritin effective in killing Lyme bacteria in test tubes.

The Bay Area Lyme Foundation's mission is to "make Lyme disease easy to diagnose and simple to cure, and to make prevention common knowledge." These are our kind of people. 

Not all doctors are educated about Lyme diagnosis and treatment. For many years, the CDC held the line that only 20,000 new cases of Lyme disease were diagnosed annually. Recently, they increased that estimate to 300,000. However, for decades those low numbers, as well as inadequate doctor-education about Lyme prevention and diagnosis, meant inadequate funding for research. Perhaps this breakthrough study is a signal that the tide is turning.

As always, consult your Lyme-literate doctor for further information. Claritin and all allergy medications can cause side effects. The study of loratadine was published in the open access publication Drug Design, Development and Therapy.


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A new year list for healing from Lyme

Setting new goals and dreaming new dreams can happen at any time. In January, though, you can almost feel a collective buzz as so many people set goals and re-evaluate past aims. If you are healing from Lyme, how does goal-setting work?

I can't remember having the consciousness to set many goals when I was really sick. It was enough to remember to take which medicine when. I used to joke that with my Lyme-brain fuzz head, tracking those meds and supplements had become my full-time job. The little notebooks I kept were my external memory drive. I could not have gotten through it without some sort of system.

New goals can seem very big and abstract. A lot of people want to work on changes in their job status, their weight, or aim for a vacation destination or specific financial goal. People dealing with Lyme often feel their world's been shrunken to the size of a thimble though. New goals any bigger than keeping track of your daily routines can be overwhelming. Still, if you're in the mood for taking a bigger picture approach, writing down your desired goals can be really healthy. It can also be healing just to reflect on last year's goals in relation to where you are today. How has your situation changed since last New Year?

Here are two ideas to try, to kickstart your new year of intentions on the healing path.

Make a gratitude list
Perhaps you already do this on a regular basis. If so, good for you. This simple act, done every night before bedtime, can be one of the most transformational things you could ever do for yourself. You can make it as general or detailed as you want, but try to be specific as you write, and really visualize the faces of the people that you're thankful for, or the doctors or nurses, children, parents or friends who showed up at your side during the worst of days. Name them all and send each one a special prayer of thanks as you do.

Name your furry kids, too. Our pets are unconditional givers. My sweet kitty, who was always by my side during my roughest months and years, recently died at age 13. I grieved for her, and also cried tears of gratitude for all the love, affection, and moments of wonder and laughter she gave so naturally throughout her life. Her passing marks a new point in my own healing stage. It was as if she came to be with me especially as I got through Lyme.

Make 12 new monthly goals
You don't have to reach the moon every four weeks. Take baby steps, and you can always adjust your monthly goals as you go along. Last year I decided to give up gluten for awhile and see how it affected me. The first thing I noticed was that there were no more sandwiches in my future. I adjusted that goal a little and things turned out fine for me.

Relinquishment goals such as that can be valuable of course, but include positive goals too. Consider how you might parse the 12 months of this new year. You could go by the seasons, or some other way that strikes you as important. Are your first three months going to focus on getting better treatment or changing doctors? Maybe your second three months could be about integrating a healthier diet and exercise routine into your schedule. One set of three might be focused on personal/cognitive skills such as starting some new brain exercise games, then you might think about making goals around who you'd really like to attract as your mentors and buddies – your healing community.

Whether or not you set goals for the new year, we wish you much love and rigorous good health as you make progress in healing from Lyme.



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Bulls-eye not the only skin rash in Lyme diagnosis

Lyme disease is found in patients whose skin rashes do not look like the bull’s-eye, or so-called “typical” Lyme rash. Skin rashes related to Lyme disease may differ conspicuously from the bull’s-eye type. Lesions may resemble numerous other skin conditions, such as those associated with contact dermatitis, lupus, and spider bites.

“Researchers note that multiple textbooks and websites prominently feature the bull's-eye image as a visual representation of Lyme disease.” They write, “This emphasis on target-like lesions may have inadvertently contributed to an underappreciation for atypical skin lesions caused by Lyme disease.” -- Some Visible Signs of Lyme Disease Are Easily Missed or Mistaken, Science Daily, Apr 22, 2013

Disregard for skin lesions that are unlike the bull’s-eye rash can be a mistake. Early detection and diagnosis is crucial in getting proper treatment, and early treatment is the best prevention for trouble down the road. Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School,

Clinical diagnosis must consider any skin rash, regardless of its resemblance to the bull’s-eye. Other symptoms may include fever, flu-like malaise, and headache, as well as sensitivity to bright or fluorescent light. Doctors must also consider context, and whether the patient has been in an area where Lyme disease is endemic.

Misdiagnosis is problematic. Get a second, third, or fourth opinion if your doctor does not listen to your concerns, or if he or she disregards unusual skin lesions, or any of your symptoms.

This development in the evolution of Lyme diagnosis is exciting, because it can help medical experts to dispel one of the common myths regarding symptoms that indicate the presence of the Lyme bacteria. Our gratitude goes out to the medical research team who made this discovery, guided by Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School.

Personal experience taught me what took medical science years to prove. Having had Lyme before these studies were conducted, I am one of the many who did not benefit from the latest research. Instead, doctors and dermatologists insisted that my severe skin lesions were a bad case of eczema and not an indication of Lyme. I was told to “take it easy,” and “get a handle on my stress levels,” and my skin condition would go away.

Nothing like a life-threatening skin rash to make you a little stressed.

Even after being admitted to the ER with a staff infection due to the increasingly spreading rash, doctors believed that only the bull’s-eye rash would signify Lyme. As a result, proper diagnosis and treatment were significantly delayed. Do not let that happen to you or your loved ones.




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Dr. Peter Muran, Lyme Disease Management

I had the opportunity to interview Dr. Peter Muran this week about his approach to Lyme disease management, which he refers to as functional medicine. Dr. Muran practices Holistic Integrative Medicine in San Luis Obispo, CA, and specializes in diagnosing and treating immune system disorders and diseases such as Lyme. Functional medicine is about treating the whole person, body, mind, and spirit. To those of us who are aware of the role we must play in our own healing, this might seem like a no-brainer, but in Western medicine it is still quite revolutionary and new.

There’s a profound sense of relief that resonates deep inside when a trained and experienced medical doctor tells you, “there’s nothing stronger than what goes on in your own body.” It felt like music to my ears to hear this. Yes, we need medicine -- sometimes very powerful medicine indeed -- but our own miraculous bodies are often resilient and strong and capable of healing themselves, if only we let them.

The main point I came away with after our talk was that immune disorders can be managed if we take a whole person, whole life, approach. Healing from Lyme is literally a life-changing experience. I’ve said in the past that I’d almost rather have something easily diagnosable, such as cancer, instead of this mysterious condition that is so difficult to treat. Dr. Muran set me straight. Cancer is much harder to get over, he told me, more devastating overall to health. Lyme is treatable. We just might not want to make the effort to change in the radical ways it seems to insist on, but if we do, we can get better.

Have you ever had a doctor tell you that “diet has nothing to do with it”? I’m pretty sure I’m not the only Lyme patient who has ever heard that from a conventional doctor. I’m no expert, but I know a line of bull when I hear it.  As it turns out, diet does have something to do with it. When I asked him to say a few words about our eating habits, and about the role of sugar, Dr. Muran offered some basic widsom:
don’t live to eat, eat to live. Diet should always be nutritional. Become aware of how the foods you eat affect you. In other words, instead of ignoring that bloated sensation, recognize that your body is giving you feedback. When beginning to work with a new patient, Dr. Muran conducts food allergy tests to help distinguish food sensitivities from a reaction to bacterial infection.

During our hour-long conversation, he touched on subjects that are close to our hearts, including of course the astounding immune system and GI tract, diet and nutrition, exercise, the function and role of the body’s secondary responders: the hormones, cortisol, insulin, and adrenal. He doesn’t go into detail, but intriguingly also mentions the importance of the role of meditation.

We also talked about his approach to handling herxes. The Herxheimer reaction is a double-edged sword for Lyme patients, because we know it is generally a sign that the Lyme bacteria are dying -- good. But with that die-off, more symptoms or more severe symptoms may also emerge -- not good. Instead of pushing the patient and risking more stress to their system, his recommendation is to back off the newly introduced antibiotic or treatment causing the herx. Reduce it to a point where the patient can stabilize and continue to heal without additional stress.

On a personal note, I was surprised and gratified to discover during our talk that Dr. Muran actually played a central role in my own healing although I never knew his name. I lived in San Luis Obispo at the time I discovered I had Lyme, and the naturopathic doctor who treated me was new to the field at the time. I was aware that he was given guidance every step of the way by a group of Lyme experts in California. That group included Dr. Muran and Dr. Steve Harris, who incidentally are both featured in Connie Strasheim’s excellent book:
Insights into Lyme Disease Treatment. Also included in the book are Dr. Lee Cowden and master herbalist Stephen Buhner, both of whom are featured guests in our own interview with experts’ series.


Listen to my conversation with Dr. Muran on managing Lyme disease.


For further information about Dr. Muran’s approach, please visit his website page on Lyme disease:
http://www.alternativemedicinehealthcare.com/immune-health/lyme-disease.www.longevityhealthcare.com
Tel: (888) 315-4777



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Self-treatment for Lyme: Understanding your immune system

Do you self treat for Lyme? Many of us do, taking our cues from others who have found ways to regain their health and build their immune systems. Self treatment is necessary, I believe, even while under a doctor’s care. Diet and exercise routines, for example, may not be in your doctor’s radar. However, both play an important role in recovery. Speaking from my own experience, I advocate taking an integrative and many-faceted approach in treating Lyme.

But where do you start? I guess it’s always made sense to me to begin with the basics. When I was very ill with Lyme, I kept notebooks and schedules of my daily routines. I was so loopy that I was afraid I’d forget to take my meds or supplements without keeping track. Plus, I think the act of doing so made me feel useful and proactive in my own recovery, at a time when I really thought I was doomed. 

What are your routines? What goes into your mouth at every meal? How much exercise do you get? Especially if you plan to treat yourself, it’s prudent to track yourself. Write it down. Not the food you say you eat, or the exercise you say you get, but in actuality.


Food sensitivities and allergies may show up as skin rashes and other problems, but the major concern when dealing with Lyme is chronic inflammation. Persistent inflammation caused by the Lyme bacterial complex can create long-term problems, but there may be ways to discourage inflammation through diet and exercise. The seat of the immune system lies in the GI tract. Besides keeping track of your daily routines, understanding the link between your gut and your health is a good place to start.

Here is an excerpt from the first in a series of articles by Dr Peter J Muran, MD, who practices Integrative Medicine in San Luis Obispo, CA, specializing in immune conditions such as Lyme disease.

There are approximately 100 Trillion bacteria in the human gut. Astoundingly, this represents 10 times more cells then what makes up the body. The presence of these bacteria has an immunological effect on the rest of the body. Under most circumstances, this immunological effect is greatly beneficial. However, disruption of this normal flora, if not tolerated, is inflammatory and can be significantly harmful.



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Has Lyme changed your mind?

Every New Year's Eve I write down my goals for the New Year. Written lists have an uncanny way of materializing -- perhaps not as soon as we would like, or in the way we imagined, but all in all the act of writing down your goals for the coming year does seem to influence your ability to achieve them.

I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.

My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.

From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.

Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.

The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.

For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:

This year, change your mind.
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The Best Lyme Treatment

You've just been diagnosed. Now what? The best course of treatment for Lyme may be the one your doctor prescribes. And it may be a combination of treatments that you devise or discover for yourself.

In another post, I asked readers if they had ever reached a crossroads in Lyme treatment. In comments and emails, the response was a resounding yes, people are doing quite a bit of experimenting with herbal and non-pharmaceutical remedies. Some work, some don't. What doesn't seem to change is the urgency that drives us to keep searching. A woman wrote me to say that she read about teasel on our blog. She decided to try it. A half a year later, she says that including a low dose of the herbal tincture of teasel is the single best move she's ever made in treating herself. She says it keeps her warm, which is a very good thing. An insidious side effect of Lyme infection is a lowering of the body's core temperature. The Big Lyme Chill. It's what makes some Lymies apprehensive about winter. We are already cold enough.

I'm trying teasel too. I began taking it in May 2010, a very low dose, which I had learned about through interviewing with Master Herbalist Matthew Wood. It is, so far, having a positive affect. But I'm a skeptic. I believe that it's not just one herbal tincture that is affecting my health, but a combination of factors. When I ask other people who have cured themselves of serious diseases to talk about how they did it, they seem to have a similar approach. I call it cross-training, and others have called it an Integral approach to healing. In a nutshell, my cross-training approach covers these four areas: experience, behavior, community, and the social systems where my resources can be found. Cross-training is a sports analogy. Getting healthy again after a terrible brush with death and a long illness takes the kind of commitment that pro athletes apply to achieving self-mastery, to winning, to beating the competition against all odds. It takes courage, and work. Not just teasel.

You may feel that you're not in charge of your own Lyme disease treatment. The medical community is certainly divided on the topic, as you probably are well aware. Just for the moment, let's turn away from the limitations of the government standards as we perceive them. Let's focus on the possible. Put it this way: What can you do to make yourself feel more in control of your progress? What small step can you take today? Maybe make a decision that you've been putting off, such as quitting sugar, or getting a second opinion from a nurse practitioner or a nutritionist, or starting a walking routine. Whatever it is, don't put it off. The best Lyme treatment is the one you can stick to, and ultimately of course, it's the one that works to restore your energy, your vitality, and your one precious human life.




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Interview with Lyme Dr David Jernigan

If you were a Lyme literate doctor writing a new book on Lyme treatment, where would you turn to find the most urgent questions being asked by people who are suffering with Lyme? The online forums. Now imagine reading a book that addresses your most pressing questions about Lyme diagnosis, treatment, and symptoms. Dr David Jernigan wisely consulted the forums online to find out what the patients he cares for most need to know.

When I was diagnosed with late-stage Lyme in 2005 a dear friend sent me Dr Jernigan's book, Beating Lyme Disease. Since my diagnosis I had been in a state of shell-shock, weak and sick, and barely knowing anything about the disease or its cause beyond the very basics.

Beating Lyme Disease
was the beginning of my turnaround. This comprehensive book helped me begin to understand what was happening, and how the body responds to Lyme bacteria. I particularly remember how helpful it was to learn about the lower core body temperatures that Lyme patients develop. While reading, I became steadfastly determined to beat Lyme, despite the grim prognosis of my infectious disease doctor. In fact I dropped that doctor like a hot potato and found a naturopath who also believed I would be healthy again one day.

Now the new, second edition of Dr Jernigan's enlightening and useful book is available, sporting the inspiring subtitle: Living the Good Life in Spite of Lyme.

Recently, I had an opportunity to talk with Dr Jernigan and learn about his unique approach to Lyme treatment. He has witnessed the positive turnaround of thousands of Lyme patients at the Hansa Center for Optimum Health, his clinic in Wichita, KS. One of the first things he clarified was that many people come to see him and his colleagues after already having seen an average of 20 - 30 other doctors or more, without finding relief.

Chances are you've experienced that fruitless search yourself. Dr Jernigan says he hears it from his patients every day. People who have been dismissed and their terrible pain reduced to imagination with, "it's all in your head," or "you need a psychiatrist," or even, as one of his patients was told by a previous doctor, "you need a new husband." I like to remember when my infectious disease doctor told me bluntly, "you are too late." (Wrong!)

Clearly, one big problem in Lyme diagnosis is that our medical industry depends on doctors who specialize. A cardiologist specializes in finding heart problems and fixing them. A dermatologist specializes in finding skin problems and fixing them, and so on. But we are not mechanistic parts and pieces, welded together like the engine of a Toyota. And Lyme is not a problem that can always be located in one particular spot. It affects all the systems of our body, including the brain and so also the mind.

If you have ever felt that a specialist has given you lousy and limited information about your illness and how to treat it, you know what it's like to be treated like a piece of machinery.

In contrast, the Hansa Center for Optimum Health has a whole person approach. Their motto is: "Healing From Within, Treating the Whole Person, Body, Mind & Spirit."

Soon I'll be reviewing the 2nd edition of Dr Jernigan's book, Beating Lyme Disease: Living the Good Life in Spite of Lyme.

Contact him through the Hansa Center's website. Listen to "The Bridge," the Hansa Center's "New Healing Radio Station," located on the website's home page.

LDRD members please login and listen to our interview with Dr Jernigan. Hear him describe his unique, whole person approach to beating Lyme, and living the good life in spite of it. Become a member
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Ever reached a crossroads in treatment?

Have you or your Lyme doctor chosen to supplement or substitute your treatment using herbal therapies, homeopathic remedies, or other alternative treatments? Over the years, I've noticed that a fair number of people who are undergoing Lyme treatment at some point decide to switch to, or at least try, herbal remedies, traditional Chinese medicine, rifing, super-oxygenation, or other alternatives to conventional antibiotic treatments. It seems that a lot of us reach a crossroads at some point in our healing journey, and have to make an important decision.

In my case, I treated with heavy doses of antibiotics for six months, and over that time period I slowly emerged from the hell of the symptoms I was experiencing. I'd been diagnosed in a late stage of Lyme, and the treatment had been as hard on my body as the original symptoms, or even worse. Actually it was impossible to tell which was worse, the treatment, which made me re-experience the original symptoms, or the sickness itself. After six months of treatment I had returned to work and was feeling generally better, but was unable to continue antibiotics for financial reasons. I reached the end of that six-month period and although I was relieved to get off the antibiotics, my doc was clearly worried about a relapse. I kept up my herbal and vitamin supplements, which were super-expensive but proving to be well worth the cost. I was curious about Samento, so I started Dr Cowden's herbal antibiotic protocol as soon as possible after I took my last conventional pill. I've always been proactive regarding staying healthy, so getting enough sleep, regular exercise and eating a good quality Mediterranean diet are my staples.

For many reasons (not only financial), Lyme patients decide to try herbs, or many other types of treatment such as HBOT (hyperbaric oxygen treatment), rife machines, Vitamin C and salt, or other compelling treatments. For example, Matthew Wood, the renowned herbalist I spoke with a couple weeks ago, tells us he's treating Lyme successfully with the common herb, teasel, and that instead of killing the bacteria, teasel warms up the body's environment and lures the bacteria out from its hiding places to be killed off by the body's own immune defense system.

In some cases, people I've talked to say they simply had an inner compulsion to switch up treatments. Evidence exists to support changing types of antibiotics because the Lyme bacteria will grow accustomed to one type of treatment, and just stop responding to it.

How did you or your doctor respond when you reached such a crossroads in your Lyme treatment? If you made changes in your treatment along the way, how did your switch effect you? Has it been positive, challenging, or pushed you into a new level of healing?

 
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Your Lyme treatment & supplement safety

Health insurance may be directly affecting your ability to get the medical treatment you need. A fair number of people who leave comments on this blog tell about the confounding experience of being rejected by their insurance companies. When a door slams in your face, whether you are in the middle of treatment or just beginning, your treatment choices are reduced or eliminated entirely. What then?

So now that the dust on the Congressional floor is settling, and the historic health care reform bill has passed, how will it affect your treatment? If your insurance company has refused to cover you for pre-existing conditions, will you now be able to reapply for coverage? During the coming weeks, we will be interviewing medical insurance experts who can help us understand the fallout from this historic passage.

Meantime, I want to call your attention to another bill under consideration, one that might also affect your treatment. I know I'm not alone in supplementing my treatment with vitamins and herbs. There is currently a bill in congress that, if passed, could change our ability to buy vitamins and supplements as common as CO-Q10, Vitamins D, C, and others.

The Dietary Supplement Safety Act of 2010 (S.3002), would amend The Federal Food, Drug, and Cosmetic Act so the FDA would have absolute discretion to decide market availability of, as well as mandatory recall authority over, supplements. Some are calling this proposed act a prohibition of supplements.

We believe that consumer safety is of the utmost importance, and S.3002 has targeted products containing steroids and other illegal substances. However, the entire vitamin and supplements industry could as well be effected, with devastating results to small-company suppliers of herbal supplements, vitamins and to the people who buy those items to supplement their treatment.

As health advocate Stephen Sinatra, M.D., F.A.C.C., F.A.C.N. puts it, "The problem with this bill is that its provisions are too broad, and don't specifically target the problems at hand.

We need the FDA to protect consumers against harmful products without smothering an industry that lacks the resources to comply with over-regulation. Coupled with greater FDA authority to decide which supplements are suitable for market, the new regulations create the potential for pharmaceutical companies to indirectly strong-arm smaller supplement companies out of business.

A more realistic balance between consumer safety and freedom in health care is possible through a more streamlined and carefully structured bill. S.3002 should not be passed as is, and public opposition could set the stage for closer scrutiny of any related supplement regulation."

Concerned about the future availability of supplements in your Lyme treatment protocol? Let your Senator know your opinion. Send an email or a place a quick phone call. Want to read the bill? Google the Dietary Supplement Safety Act of 2010 (S.3002) to view the .pdf.

Learn how to approach Lyme through holistic cross-training.
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Treatment issues for children with Lyme

Dr Charles Ray Jones is a man with three ordinary names - yet he couldn't be any more extraordinary in his service to chronically ill patients, the children he treats every single day.

A reader sent a note last week that brought tears to my eyes -- the joyful kind.

Here is part of her note:

"My 11 year old is now under the care of Dr. Jones and is making incredible progress in his path to wellness. I appreciate what you are doing. Thank you for being willing to get the word out. What a frustrating journey this has been but I finally have my medical support system in place. It took a while. I was told by an infectious disease specialist in Maine that I was crazy and that my son was perfectly healthy. Dr. Jones is a saint and he has given my little boy his life back. He is again running and climbing trees and happy and bubbly...a far cry from last year at this time. I wish all of you the best and again, thank you. Have a wonderful Thanksgiving."

Unfortunately, too many moms can relate to being told by a medical professional that there is nothing wrong with their kid, when the reality is that if Lyme bacteria is present, treatment could restore the child's health (and the mother's sanity).

Dr Jones has been called (by a colleague of his), "an international treasure - a courageous, selfless, inspirational, and outstandingly gifted clinician who has helped thousands of the most severely ill children with Lyme disease from around the world to regain their health and their lives."
r Charles Ray Jones: upcoming interview">
Dr Jones talked with me a few weeks ago, about Connecticut Governor Rell's June 2009 decision to allow doctors to treat Lyme disease. He also talked about the significance of the recent IDSA Lyme treatment guidelines hearing in Washington, DC, and the future of Lyme disease treatment.

Listen to the interview in the member’s portal.
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Working with Lyme brain - Under Our Skin

Under Our Skin filmmaker Andy Abrahams Wilson discussing his film on The Wrap.

I have to laugh now, because in retrospect it's funny, but at the time it was embarrassing. It's a memory of my interview with Andy, which I conducted a few years back before the Turn the Corner Foundation stepped in to help fund his film. I'm sure he didn't think much of the incident.

In our conversation, Andy was very gracious. He spoke eloquently about his sister's trouble with Lyme disease, and later, his feeling of helplessness when a close friend of his then discovered she also was suffering from late-stage Lyme. He'd been so moved to do something about the misunderstandings around Lyme symptoms and Lyme treatment, that he entered into the long process of making Under Our Skin, which is still gaining ground and helping the Lyme community to get the word out.

The embarrassing part was that in interviewing him, I couldn't get my phone recording equipment to start correctly. Lyme brain was so intense at the time for me, that I couldn't fix the problem. I had to hang up and call him back. I was too proud to admit that I was having a hard time that day. I couldn't tell whether it was the equipment or me who was glitching. However, Andy was incredibly kind and generous, and allowed me to reschedule our talk for later that day.

It wasn't the first time that had happened. A month earlier, I'd gotten through an interview with Dr Christine Horner, but I could barely hear her the entire time. My tinnitus was roaring, but that wasn't it. It was that awful, foggy Lyme brain again. It took away my ability to multi-task and hold two thoughts at a time. Normally I'm a fairly good troubleshooter, but there was no way I could troubleshoot and conduct an interview at the same time. It didn't even occur to me to ask if we could reschedule. When the interview was complete I hung up, and discovered that I'd put my earphone in backwards. No wonder she'd sounded faint the whole time.

These are not pretty memories.

However, remembering the bad times allow me to measure how far I've come back into balance. Using my brain is one of my favorite hobbies. I guess I'm grateful for all my Lyme experiences now, since I've come out on the other side, and can actually work my recording equipment pretty smoothly again...usually.

What about you? Care to share a Lymie memory? Please share your story in the comments!
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"My year in HELL"

It's Friday, and I wanted to share this with you all. One our readers, Kim Jones, gave us permission to post this happy note. If you're sick, take heart and know that there are many, many people who are beating Lyme:

It has been a year since a nasty little tick gave me the disease from HELL. But I am back among the living. And living well. Feeling better than ever! Something I did not think was possible a year ago. Some days were so hopeless and I was too tired to read in bed or walk down my driveway to get the mail let alone work or go out with friends.

I dreaded the full moon and nights of restless sleep and days of endless exhaustion. The joint pain was incredible and I could not think through the brain fog to function in any normal sort of way. I will forever look back on May 2008 as the beginning of my year in HELL.

Never mind the swirl of doctors and pills and tests that we have all gone through and the endless researching and reading to find an answer. I absolutely was consumed with finding a cure - I was not going to let this ruin my life. I was absolutely glued to my computer screen searching every LD site I could find.

Then later, when Under Our Skin came out (I bought an advance copy), I watched it over and over while I cried seemingly endless tears. But I refused to allow this to happen to me. Mine is a story of strength and perseverance and just plain stubbornness on my part. Even from the beginning I made my mind up that this THING was NOT going to get me. I was going to beat it.

And I have beat it. Thanks to self-determination, excellent nutrition, LOTS of exercise, and meditative positive thinking. Also, with support from my husband and an excellent local LPN, the only one in the medical community who would listen and help me with meds and support, and a team of online supporters.

I have WON this battle. I am symptom free now for over 3 months. No meds, no brain fog, no fatigue, no rash, nothing. I really am free of this dreaded disease. I now have my life back - whoooooooppppppeeeee!
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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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Top US Athlete beats Lyme

From the time she was three years old, Perry Louis Fields has wanted to be the world's fastest runner. Now 30, the US Track and Field competitor says she's training at the top of her game. What makes her athletic success so sublime? Perry's torturous encounter with Lyme disease in 2003, which she says she has now beat.

"I’m not only healthy," says Perry. "I’m healthier than I was before I was bitten (no kidding!). My training and racing proves that. I’m the fastest and strongest I’ve ever been."

Beneath Perry's easygoing persona and her honey-toned Southern accent, she has a fiercely competitive nature. After enduring a miserable four or five month period of powerful antibiotics, she decided to quit the conventional route and devote what little energy she had to researching and finding "the cure," as she calls it. Although her symptoms "made every day a nightmare," she willed herself to begin taking baby steps toward getting back to her goal of running again.

With the dedication and steel determination of a true winner, Perry achieved her dream of not only running, but training as a pro once again.

"What Lance Armstrong did for cancer, I hope to do for Lyme disease. I have sometimes told myself that I wish I had cancer rather than Lyme. Someone with terminal cancer may feel otherwise, but I’m truly upset that the research on this disease is so inconclusive. The treatment for Lyme is inconclusive. It’s like nobody has had any experience with it at all, yet hundreds of thousands of people get it every year (I think that number is more like millions.)"

LDRD members can login and listen to Perry tell her inspiring story about beating Lyme. For Perry's website, please go to beatlyme.com.

Become a LDRD member and listen to dozens of interviews with both Lyme experts and ordinary people like you that struggle with Lyme disease.
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Lyme epidemic causing healthcare crisis



CHARLOTTE, N.C., Feb 24, 2009 (BUSINESS WIRE) -- An ongoing battle over the diagnosis and treatment of Lyme disease, a tick-borne illness, is pitting doctors against doctors, prompting health insurance companies to deny medical claims at an alarming rate, and leaving suffering patients stuck in the middle.

Read the full press release here.
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Immune system support

A few subscribers have said they're curious about my own particular healing protocol. We all know that there's no silver bullet where Lyme is concerned (although we wish) and that what works for your cousin or someone on your Lyme forum may not work for you, and vice verse. So keep that in mind. For the record, I feel great these days -- nearly normal (what a concept! Was I ever?). My routine is a blend of Dr. Cowden's and master herbalist Stephen Buhner's Lyme protocols, with a handful of other stuff thrown in for good measure. I get enough sleep, eat organic vegetables and fruits, try to exercise every day, and take probiotics.

One thing that I've learned from my own experience, as well as from talking to Lyme specialists and others who are healing, is that when you take antibiotics you must replace the friendly bacterial flora in dryour gut. Otherwise, "you can cause problems for yourself that are just as harmful as the Lyme symptoms themselves," says cardiologist and Lyme researcher Dr. Lee Cowden, whose herbal protocol for Lyme disease has helped many people. Even long after you stop taking antibiotics, probiotics can assist in bringing balance to your intestines. The intestines play a central role in the human immune system, and getting better is in many ways dependent on supporting the immune system.

So I want to mention something else I also take daily, a lactobacillus-based supplement that supports my immune system. I take 2 to 4 capsules daily, more if I feel stressed. It's called Del Immune V. A friend of mine sent me some when I first got diagnosed and I haven't been without it since. She takes it religiously too, as part of her protocol for hepatitis C. I have seen its effect on her, and the stuff is good. It seems to banish dark circles under her eyes, and best of all it seems to help lift her back to her natural wise, warm and witty self.

Although I haven't taken pharmaceutical antibiotics for two years, I've continued to take this high quality probiotic from Bulgaria. Although I may run out of other supplements and let them slide from time to time, I try to never go without Del Immune. It's made from a strain of lactic acid bacteria -- lactobacillus -- more precisely known as Lactobacillus rhamnosus, DV strain. The lactobacillus is cultured, then digested with natural enzymes that are an exact match to the enzymes in the human intestine, creating a product that is made of cell wall fragments containing pieces of cell DNA.

No silver bullets, but smart choices. Like eating organic and treating your tummy, and your immune system, with care.
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Memory games

One Lyme symptom I really hate is the word-finding problem. You know how it is. You're talking to a friend and suddenly the word you're looking for seems to have been sucked into a black hole. It's not merely gone -- it's non-existent. Frustrating, huh? The good news is, you can improve your word recall by playing memory games. It doesn't take long, maybe 10 or 20 minutes a day. As with physical exercise, when you're consistent you see improvement.

Wordjuxtapoz.com, lumosity.com and mybraintrainer.com offer different types of memory games, ranging from easy to very difficult. With practice, you can improve your brain processing speed and other cognitive functions. Games are addictive!

You don't have to go online, of course. Take that puzzle-in-a-box down from the shelf, dump out the zillion little pieces on a card table and pull up a chair. Our family always has at least one puzzle going around the holidays. It's a comfortable way to pass a rainy day together. Improving your concentration and recall by focusing on detail is an active, healthy way to participate in your healing journey. And you won't be thinking about Lyme bugs.
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HBOT for Lyme

Like many serious diseases, Lyme disease causes an oxygen deficiency. One very distressing symptom is often called "air hunger," and it can make you feel like a fish out of water. No matter how deeply you breathe, you just can't seem to get enough air.

Increasing the available oxygen is a must for healing. Any sort of exercise that increases your oxygen intake seems to be invaluable for beating Lyme, and most of the people I've interviewed who are healing or healed from Lyme engage regularly in physical exercise, activities ranging from brisk walking, running to swimming and vigorous biking.

Some people use Hyperbaric Oxygen Therapy as an adjunctive Lyme treatment. HBOT administers oxygen at high atmospheric pressure, saturating the body with oxygen and increasing the total available amount. To receive a treatment, you climb into a chamber where pure oxygen is delivered at three times the normal atmospheric pressure.

Among US doctors, HBOT is controversial, although it has been commonly used for many years to treat burns, injuries from car accidents, carbon monoxide poisoning, smoke inhalation and other sorts of trauma. It has also proven valuable in treating people with AIDS and HIV, and others who suffer from opportunistic infections resulting from immuno-suppression.

HBOT is widely used in Europe and other countries to treat people suffering with multiple sclerosis, those who are recovering from strokes, and people suffering from drug and alcohol addiction. Although HBOT is still controversial in the US, it is gaining acceptance and used by conventional and alternative doctors.

Have you used HBOT as an adjunctive Lyme treatment? If so, I'd love to hear about your results. Please drop me a line.
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Joe's Lyme success story

"I beat Lyme. I'd like to share my story," wrote Joe. To someone hurting with Lyme symptoms, could there be any sweeter words than those?

Joe's story filled me with inspiration. "Don't give up hope," he says, and he should know.

Although he now resides in Europe, he grew up in a region of the US where ticks are a part of everyday life, especially for a kid with a dog. Sick during his childhood with mysterious symptoms that he was eventually told he had outgrown, he struggled with chronic pain many years later. After a vacation in Barcelona, he became very ill and dragged himself from doctor to doctor, as one after another refused to treat him for Lyme. He was desperate and suicidal during the roughest period, which lasted six years. At the end of that time he discovered a newly established Lyme treatment clinic in Germany, the Borreliose Centrum Augsburg, and his life took a dramatic turn for the better.

At the clinic, his recovery from Lyme officially began. He was placed on three months of IV antibiotics, but not a "cocktail" blend that some US Lyme doctors use. Immediately, he began feeling better. In addition to antibiotics, doctors at the clinic engaged him in several types of the supporting therapies, including infrared and oxygen treatments. He also uses the powerful herbal therapies from Stephen Buhner's book, Healing Lyme.

Today, Joe has returned to the working world. The terrible six year period now seems surreal to him. "It's an intense pain that doesn't go away, and nobody can understand it," he says. "It's confusing for the person who has it, trying to explain it to their friends and their employers."

Joe feels strongly that people who heal from Lyme should follow up with their doctors, so medical professionals can better track which Lyme treatments are working, and which are not. He has talked to doctors who tell him that often patients leave their care and never update the doctors about their condition. Unfortunately, it's easy to find stories of people suffering from Lyme disease, yet less common to hear about those who are healing and engaged in vital and productive lives again. There's plenty of bad news on the web. This is why we collect and share success stories.

LDRD members, listen to Joe tell his success story here. And please keep your eye out for an upcoming interview with Joe's doctors at the Borreliose Centrum Augsburg.

LDRD members can listen to the interview with Joe by logging in. Learn more about becoming a member.
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Beating Lyme takes courage

Advocating for yourself requires courage. For years I've suspected that chronic Lyme patients have got to be some of the gutsiest people around. After listening to the personal success stories of a number of people who are beating Lyme, it appears that courage is an ingredient they have in common.

For example, Darryl tells about his fierce battle with Lyme symptoms, his struggle to find adequate medical help, and ultimately, his success. As he explains, he makes a living as a professional athlete, racing bikes and working for the studios as a stunt man.

Stunt work is dangerous. These guys and gals deal with a gamut of risky activities, such as faked accidents, explosions, and racing away from the scenes of television crime. It's safe to assume that a stunt guy would have guts.

But imagine the courage it took for Darryl to lose the physical ability to work, to have to begin advocating for himself without any help from friends or family members, to fill out form after form of insurance information. To live alone on disability for a period of three years. And all the while, to endure the intense symptoms that we've all experienced in varying degrees, thanks to this pernicious disease.

Of course, you can easily imagine his situation, because yours is probably not so different from his. You may not be a stunt guy (or gal), but your struggle has undoubtedly been just as difficult.

Are you beating Lyme? I would like to hear--and share--your success story. Write to me here.
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ILADS to train more doctors

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.
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Send your doc to SF

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.
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Chronic Lyme Disease

Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.

Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.

Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.

Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.

Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.

Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.

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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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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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Ticks carrying lyme disease active in fall

Lyme disease treatments vary, and so do medical experts' opinions about which treatments are the most effective. Many physicians and Lyme sufferers advocate a balanced approach to treatment, emphasizing the importance of a high quality diet, supplements, exercise, plenty of sleep, and a positive mental attitude in addition to herbal or pharmaceutical antibiotics. Evidence suggests that the spirochetes, the agent that carries the disease throughout the body, are more effectively eliminated when a variety of treatments are employed. The bacteria are likely to hide in cyst form throughout the body's organs, such as the brain and the heart. When treatment is varied, either in type or timing, the bacteria are more likely to be "surprised," unprepared for attack, and thus killed.

Lyme disease attacks every level of the body, so it makes sense to use a multilevel approach to treatment. While seeking treatment, especially if you are drawn to exercise outside during temperate fall weather, bear in mind that this season is rife with risks for those of us who live in the western US. Adult western ticks are active in the late fall and winter. Many Californians are unaware of the potential for contracting Lyme disease, remaining under the false impression that it doesn't occur on the west coast.

Those who hike, bike and walk in the woods and on the scenic California trails are not the only ones who should be vigilant. Ticks who carry and can transmit Lyme disease can be found in urban and suburban neighborhoods as well as in the mountains and meadows. They are bloodsuckers, dependent on passersby for a living. They aren't picky whether the warm-blooded creature who passes is a dog, a mouse or a human, just as long as they can hop on. Ticks can only move around in about a nine foot circumference on their own. In order to get a warm meal and a ride, the tiny critters -- about the size of the period at the end of this sentence -- climb to the tips of grasses, waving their legs and waiting. You are wise to consider seeking treatment for Lyme disease if you suspect a tick bite, and have any of the common symptoms associated with the illness, such as fever, overwhelming fatigue, skin rash, and joint stiffness. Seeking early treatments for Lyme disease raises your success level in dealing with, and healing from, this serious bacterial infection.
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Healing Lyme Disease with Art

When I was super sick, a couple of years ago, I had constant skin pain, the medical term for which is severe neuralgia. I'd never experienced such horrid, continuous sensations. If someone had handed me a gun, I might have shot myself. Fortunately, I didn't get my hands on a gun. I picked up a paint brush instead. I only had enough energy to paint for short durations of time. I chose a small project that took me about three nights to complete, and spent about a half an hour each night painting. During the brief time that I was actually painting, I became completely absorbed in my work. I concentrated fully on how the paint looked on the brush, watched it with wonder as it came slowly off the brush and onto the canvas, curving in direct response to my idea of a design. Astonished, each night I would experience the pain returning as I put away my paints and cleaned the brushes. What was going on?

I called an artist friend, and she corroborated my suspicion. Art, or to be specific, any creative act, heals. Those few precious pain-free moments saved me. Eventually, the moments stretched out and now I live without pain. Looking back, I recognize that the full-on concentration I poured into that small art project created a break in the pattern of stress and pain that had become part of my moment-to-moment experience of living.

Stress is a big challenge when you're healing any serious or chronic disease, and Lyme patients must learn strategies for coping with it in a positive way. It's not as if stress is going to go away -- as everyone knows, it's a natural part of living. Out of despair at the realization that he could not heal me, and that he must accept the fact that I had to heal myself, my partner brought home paints and paintbrushes. I have a background in art, and yet until it was a life or death situation, I had no clue how the practice of painting -- of focusing on one simple creative act -- could help me begin to heal. So how do you deal with it?

One smart way to get a handle on stress is to cultivate a regular meditation practice. Sitting down, calming your mind, and focusing on your breath is something you can (usually) handle even when you're sick. It is a challenge to meditate when you're scared, or in pain, or when a coherent thought can't easily navigate your brain fog. But meditation needn't be long or grueling. Shoot for short sessions. Even sitting and clearing your mind for one minute is helpful, if that's all you can muster. Try going for five minutes next time, fifteen the next. One or two times a day has been proven to help the mind to learn more quickly, and integrate new information more efficiently. You don't have to follow any specific format in order to benefit from meditation practice. You can paint, like I did. Some people merely focus on their breath moving in and out. When the mind wanders, as minds will do, simply become aware of this fact and gently bring the focus back to the breath. This type of focus can't be underrated in terms of helping you get off of the pain train, even momentarily.
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Herbal protocols for Lyme

Lyme researchers and medical experts say herbal protocols such as Dr. Lee Cowden's are helping people who suffer with Lyme disease. Clinical studies have tested the effectiveness of a Peruvian herb that by now you've probably heard of: Samento. Other herbs from South America, Cumanda and Burbur, are also currently undergoing a clinical study for their effect on Chronic Lyme. These herbs are imported from Peru and available for use. If your doctor hasn't heard about them, ask her or him to investigate. Read more here.

Many people are finding that these herbal tinctures are safer to use and more effective than antibiotics, with the benefit of not having side effects. Dr. Cowden believes that detoxification of the body is just as important in long-term healing as finding and following a protocol that works.
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Common mistakes in diagnosing and treatment

Deliberations and contestments continue over successful treatment of Lyme disease. Due to the difficulty of getting a correct diagnosis shortly following the initial infection, Lyme patients commonly do not seek treatment until the symptoms become painful. Not everyone gets the bullseye rash! At the present, most physicians do not know how best to diagnose Lyme. If you or a loved one are suffering from symptoms you suspect may be associated with the disease, it is very important to seek a Lyme disease expert. Incorrect diagnosis, and subsequently, inappropriate subscription medication, can lead to serious complications for the person with an underlying infection due to undetected Borrelia bacteria.
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Treatment of Lyme and CFS with Samento

Medical research reveals Lyme disease and Chronic Fatigue Syndrome to share not only similar symptoms, but in some cases identical gene expression as well. In my conversation with Dr. Andrew Wright of the UK, he said he thinks that CFS is caused by a bacterial infection, and in many cases it seems to be the same bacteria, Borrelia, that is at the root of Lyme disease. He discussed the success of Samento, his preferred treatment of both illnesses, and his desire for more medical studies to be conducted on the long-term treatment of Lyme and CFS with herbal antimicrobials. As Samento has no effects, is safe and more well-tolerated than antibiotics, he says it's his first choice for treatment. Read more here.
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Definitive Lyme test and Samento

Tests for Lyme seem to be deliberately confusing. Is there a definitive test or isn't there?

Dr. JoAnne Whitaker, Eleanor Fort and Lida Mattmann, PhD, have patented one. The Q-RiBb, which tests for antigens instead of antibodies is definitive because it locates actual Lyme bacteria in the body. Through the Bowen Research Lab in Florida, these physician/researchers have tested hundreds of people and found Lyme bacteria to be the cause of numerous misdiagnoses, among them MS, ALS, Parkinson's disease, fibromyalgia, CFIDS, rheumatoid arthritis and cardiac arrythmias. Dr. Whitaker has reason to suspect that Lyme is a pandemic that is being repressed by the medical-industrial complex.

People who have been misdiagnosed and subsequently treated for Lyme disease are getting well. The Lyme pathogen is hardy, tenacious and difficult to kill, but medical doctors with the courage to help their patients heal are finding holistic protocols that work. Samento, Cumanda and other Peruvian herbs, which have only become available in the US since 2001, are rising in popularity among the Lyme population, many of whom are quite sophisticated in finding ways to heal from a disease that the conventional medical community is too frightened to acknowledge.

For information about Samento and Cumanda, click here

Click here to join the LDRD and listen to our interview with Dr. Joanne Whitaker and many other Lyme literate physicians
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Healing lyme with herbs

At this point in time, antibiotics are the clearest choice for killing spirochetes, with some caveats. Many people think of herbal approaches to treating Lyme borreliois as "experimental." The term is meaningless in relation to Lyme disease. With Lyme infection everything is experimental. -- Stephen Harrod Buhner, Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections

The spirochetes are scavengers. They're adept at feasting off of their host and creating endless suffering from eating in their "favorite restaurants," as Stephen Harrod Buhner says: our knees, our skin, our hearts. In his book, this master herbalist and psychotherapist who writes about sacred plant medicine gives a keenly intelligent overview on Lyme disease, offers a core protocol for healing Lyme, and goes into detail about the many herbs that have acted as potent healers across time and tradition. His unique protocol is being followed by patients and physicians alike, either in conjunction with antibiotics or alone.

Stephen writes cogent and in-depth explanations about this natural healing protocol. He generously agreed to take part in the unique "Conversations with Experts" special feature on the LDRD website. Do yourself a favor: Listen to my interview with Stephen here.
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protest the IDSA guidelines

Read this comprehensive article published in Danbury CT that cuts to the heart of the matter:

Nov 28 2006 6:39 AM
Lyme disease activists to protest
By Robert Miller

THE NEWS-TIMES

Area Lyme disease activists, dismayed by recently released treatment guidelines for the illness, will go public with their protest Thursday, rallying at Westchester Medical Center/New York Medical College in Valhalla, N.Y., where the lead author of the guidelines works.

"They're highly restrictive,'' said Dr. Steven Phillips, a Ridgefield physician who is the former president of the International Lyme and Associated Diseases Society. "I just cannot understand why they've chosen to ignore all the data on this.''

"They were worse than we expected,'' said Maggie Shaw of the Newtown Lyme Disease Task Force.

"In a word, I think they're a disgrace,'' said Dr. Raphael Stricker of San Francisco, who is the current president of ILADS. "They're not relying on best science. They're relying on their opinion.''

The guidelines are so controversial that Attorney General Richard Blumenthal has intervened. His office is now investigating whether the group that wrote the guidelines, the Infectious Diseases Society of America, is a monopolistic organization trying to shape treatment of the tick-borne disease without allowing other treatment options to emerge.

"It's a medical issue but also a patient issue,'' Blumenthal said. "Their guidelines limit very severely the types of diagnosis and treatment available to patients. In a way, that's anti-competitive.''

The national guidelines issued by the Infectious Diseases Society of America recommend that doctors give patients with Lyme disease 10 to 28 days of oral antibiotics to treat the disease, with another month allowed for persistent symptoms.

But the guidelines -- now posted on the Web site of the Centers for Disease Control and Prevention -- deny the existence of chronic Lyme disease, saying there's no medical evidence that the bacteria that causes Lyme survives antibiotic treatment.

It also emphasizes using either the characteristic bull's-eye rash or blood tests to help correctly diagnose the disease -- two methods Lyme activists say can lead to Lyme cases being missed.

Diana Olson, spokeswoman for the infectious diseases society, said the 14 doctors who worked on the guidelines -- led by Dr. Gary Wormser, an infectious disease specialist at Westchester Medical Center/New York Medical College -- studied more than 400 published medical reports on Lyme disease before coming to their conclusions.

"This is the best science has to offer,'' she said.

Olson said the society could not take into account things like patients' anecdotal accounts of their Lyme disease treatment in writing the guidelines. Nor, she said, did it concern itself with whether insurance companies would pay for treatment outside those guidelines.

She also said that guidelines are just that, and that patients and doctors are free to find different treatments that work best for them.

She also said the society is cooperating fully with Blumenthal's office.

"In our experience, we've never heard of this kind of investigation,'' she said. "But we stand behind our methods and our recommendations.''

But Lyme activists and doctors who support a more liberal approach to treating the disease said the new guidelines are highly restrictive, not allowing doctors any latitude in treatment.

Perhaps the most contentious point is whether chronic Lyme disease even exists.

Many Lyme patients and their doctors contend the standard treatment for Lyme disease sometimes fails, or never gets administered to begin with.

When that happens, they say, the bacterial spirochete that causes the disease can re-emerge in the body, causing a bewildering array of symptoms -- including arthritis, chronic fatigue, heart problems, memory loss, depression, and neurological disorders including loss of sight and hearing.

To treat these symptoms -- and those of several other tick-borne illnesses, which can overlap -- these doctors recommend several months or even years of antibiotics, often using a mix of drugs.

The infectious disease society, however, said that these symptoms are "nonspecific'' and associated with many other illnesses, not Lyme infection. They also caution that there are medical problems -- including the development of drug resistance -- that should lead patients to avoid long-term antibiotic care whenever possible.

But Phillips of Ridgefield and Stricker of San Francisco said this approach ignores the hundreds of studies that now show the Lyme bacteria can bury itself in muscle tissue, lie dormant, then re-emerge.

"There (have) been 18,000 papers published on Lyme disease,'' Stricker said. "So saying you're looking at 400 means you've only looked at 5 percent of the research."

"The evidence just continues to grow and grow on this,'' Phillips said. "To ignore a whole section of this research, as if it doesn't exist, raises questions for me.''

Because of the prestige the infectious disease society carries, Lyme activists say insurance companies will now be even more adamant about refusing coverage beyond 28 days of antibiotics -- something, they say, that has already begun.

They also say the new guidelines will stifle new treatments, because doctors will fear they'll be disciplined if they step beyond the guidelines.

"This isn't theoretical,'' Blumenthal said. "It will come down to a matter of dollars and cents.''

Contact Robert Miller
at bmillernewstimes.com
or (203) 731-3345.
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Qigong and Lyme Disease

If you are like many people and would rather have a root canal than exercise, listen up. In Chinese traditional medicine and complementary medicine, there is a belief that in order for us to stay healthy or to heal from disease, we need to maintain balance. One of the simplest ways to do this is with a bit of daily exercise. Qigong is a simple and easy way to help your body regain and maintain balance. You may know that Qigong is an ancient exercise that hails from China. Qi, or chi, refers to the life-force or energy. Increasing your qi leads to healing, but bear in mind that you must also practice patience with yourself, because healing probably won't happen all in one day. Create a simple, pleasant space where you can practice your daily routine. Express your determination, kindness and compassion for yourself and your unique healing path.

You can practice these gentle exercises by yourself in your living room, or maybe you're the type of person who needs the support and camaraderie of a group. Figure out what feels right to you, then just set your mind to following a routine. Dedicate yourself to healing. Asians have used these exercises for over 5,000 years to maintain health in mind, body and spirit. Qigong is only one form of exercise that you can do to help alleviate stress, increase your blood circulation, and calm your mind. I find that Qigong, like yoga, helps calm my mind. I recognize that I'm dealing with a serious illness that has changed my life, my relationships and my daily routines in every way. Anxiety is a natural result of all these changes. Anxiety arises when I feel my healing going two steps forward, one step back. A daily routine of calm and focused physical exercise helps me release the fears and find balance, literally and metaphorically.

Learn more abour exercise and it's effects on Lyme disease as a member.
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