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Lyme Disease Symptoms

Can we break chronic pain patterns?

Chronic pain is exhausting. Especially when there seems to be no way out. But as the saying goes: when you’re going through hell, keep going.

Because going through may be the only way to get over it.

A few years back, I was at the peak of suffering from chronic Lyme symptoms. One symptom was non-stop itching and the feeling that zillions of creepy-crawlies were devouring the skin all over my body.

I was at the edge of my tolerance, stressed and about to die, I thought, from sheer misery.

And then something happened. The pain subsided, disappeared unexpectedly.

And it was heaven.

But it was temporary.

The relief lasted only about a half hour, but it was enough to show me that it was possible. That was my introduction to the miracle of the mind-body connection and the power of distraction.

Have you ever experienced “pain fountains”? If you suffer with chronic Lyme symptoms, you may know exactly what I mean.

Let’s just say it. The body-mind connection is a singular, miraculous evolutionary development. A god-given gift. Practice being in tune with it increases our awareness and sensitivity.

Pain in our bodies is also experienced in our minds, and vice verse. The mind can assist the body in healing, yet it can also lock us in a loop of pain that feels impossible to escape.

Dealing with serious illness is one way — one hard way — to learn more about this mysterious connection. A doctor friend described these pain fountains as the patterns formed in our neuronal pathways in response to chronic pain. A sort of dance between body and mind.

In my experience, the pain fountain felt like a recording on repeat, ad infinitum, ad nauseum.

But what I didn’t realize — until I experienced it out of the blue — was that pain fountains can be, if not stopped, interrupted. And that interruption can reward an exhausted immune system with a temporary reprieve from the agony of chronic pain.

The result can bring about a deep sense of wellbeing, although usually temporary, and often brief and unexpected.

Like a gasp of air in one who thought they were drowning. Like a good night’s sleep to an insomniac. A break in the pain fountain can ignite hope in the heart. And that is what healing feels like.

Is it possible to set the stage for such a break in a chronic pain fountain? I learned the answer when I picked up a paintbrush and proceeded to thoroughly distract myself from my suffering.

But it doesn’t have to be a paintbrush. It could be knitting needles, or a fishing pole, or a model railroad, or a practice of Tai Chi.

I stumbled accidentally into the powerful effect of creating art. What do you love to do? I suggest you do it, no matter how awful you feel. It can’t hurt, and it might just break the pattern and help you find healing.


Art & Acupuncture: 2 ways to get chronic pain relief

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Sugar cravings and nightsweats: What is your gut trying to tell you?


Causes of autoimmune disease.
Dr. Peter Muran is like the Sherlock Holmes of Lyme literate doctors.

A physician who specializes in natural, alternative, and complementary medicine, with a background in engineering and chemistry, he says disease doesn't just happen.

He explains that preceding every disease, including chronic Lyme, there is a pathway, a chronological timeline that led to the condition.

Take, for example, the classic killer heart attack.

“Someone doesn't simply have a heart attack and die,” says Dr. Muran, who, along with his wife, Dr. Sandy Muran, practices Functional Medicine at Longevity Healthcare in San Luis Obispo, California.

There are factors that lead up to the cause of death, he explains. If you take an engineering approach and look for the clues, you can discover a telling storyline.

The heart attack does not come out of the blue. First, an occurrence of some sort leads to the clogging of the arteries, and then, this disease of the arteries develops until they get blockage, and then finally, the result is a heart attack.


Nudge it with a sledgehammer?
As he sees it, the doctors' job is not to come up with a diagnosis so that a label can be slapped on the illness, and a code to treat it can be decided upon.

Instead, his goal is to investigate the chronology leading up to the illness, to locate just where along the line the imbalance occurred. Then, he says, the doctor's job is essentially to get out of the way and allow the body to heal itself.

But in their effort to heal the patient, doctors can make errors in judgement.

For example, it only takes a nudge, a very mild or slight tuneup of the hormonal system for tremendous results, says Dr. Muran.

“When Prednisone is given to manage a slight cortisol deficiency in the hormonal system, it's like using a sledgehammer when all you needed was a tackhammer.”

What does this mean for us patients? It means that we can have some degree of control in changing our particular situation.

While there is no way to change the fact that we got Lyme to begin with, chronic Lyme can be examined objectively, looked at and analyzed the way one would a story—or a crime.

And a good place to start looking for clues is in our diet. Conventional doctors are not schooled in nutrition, so we'll get little help from them.


SAD but true
Most Americans, finds Dr. Muran, live to eat, intead of eating to live. The SAD (Standard American Diet) causes stress and inflammation and creates imbalances in the immune system. Under these conditions, diseases which we could normally keep in check are instead allowed to flourish.

Dr. Muran finds that patients dealing with chronic disease often do have problems in their GI tract.

Night sweats, sugar cravings, and other disturbances are often a result of the inflammation and imbalance in the gut caused by an unhealthy diet.

He points out that we are not subjected to anything separate from the earth, or sterile. “Our GI tract has 100 billion cells living in it,” he says, which is ten times the number of cells that make up our body.

It doesn't take an engineer, or even a Watson, to recognize that our bodies have an ongoing and continuous relationship with the earth, meaning the flora and fauna that live inside us, and that actually play a key role in our wellbeing.

Our bodies are miraculous and resilient. Given half a chance to survive, we may even begin to thrive. Making positive shifts in our lifestyle and diet can help us manage chronic Lyme.


Members, for further information about Dr. Muran's approach to managing chronic Lyme Disease, please listen to our 4-part interview with him in our Lyme Experts audio interviews series in the membership portal.


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How I survived the Herx

Ten years ago, one day in July, 2005, I was sick with Lyme, and vacillating between extremes. I was feeling pretty positive most of the day, symptoms not horrible, merely terrible…a big improvement.

But at that moment, my naturopath called, and our conversation sent me into a mental funk.

Through the brain fog, I strained to comprehend what he was suggesting.

He explained that he really didn’t want to prescribe antibiotics. But in the next breath he said that because I was not out of the woods, I really must use them.

He said antibiotics were crucial now, because there was a neurological involvement we must address. Neuroborrellia.

He recommended intravenous antibiotics, and thought I should have an IV for the next several weeks. That meant getting a catheter stuck into my arm and bringing home a portable IV stand with a bag. Then I would be injecting myself with antibiotics every day.

The thought of having a tube stuck into my arm me depressed me to no end. But the problem was, there was evidence that with Lyme disease, long-term antibiotics are effective. In fact, they may be the only way to prevent symptoms from returning.

It was a conundrum. I felt like I was being pulled in two directions at once. I did not want the catheter. I did not want to stay on antibiotics. I dreaded the Herx. But, I did want to kill the spirochetes, and I did want to get completely well.

Evan, however, was convinced that I was coming along really well. He was my systems-thinking cheerleader.

“Look at the numbers,” he said. “You have only been on the antibiotics for twelve days. You added a second antibiotic on Friday. Okay, so you herxed in misery. But instead of seeing that as bad,” he said, “look at it this way. The Herx proves the antibiotics are doing their job. They're killing the spirochetes efficiently.”

And it turned out that he was right. Doctors call it a die off. The Herx is one of the ways of measuring the effectiveness of the antibiotics. It’s a case of the cure being as bad as the illness.

Spirochetes — the original survivalists
Spirochetes are ancient organisms, eons older than dinosaurs. Over the ages they have had nothing else to do but refine their survival techniques.

For such minuscule critters, they’ve got a sophisticated arsenal of ways to keep from detected by your immune system. They can armor themselves with cysts to keep the antibiotics from reaching them, and morph into other forms, thus playing hide ’n seek in your tissues, muscles, organs, and brain.

The spirochetes are the villains, and the last thing they want is for the Terminator — your immune system — to locate and destroy them.

Fight back! Why anaerobic exercise helps
Lyme spirochetes thrive in a cold, low body temperature. I was beginning to get the idea that I would have to fight back, and fight hard. As much as possible, I started to include therapies and lifestyle changes that would increase my core body temp.

The good news is that Borrelia burgdorferi are anaerobic organisms and can't survive in a high oxygen environment.

My plan to fight back began to take shape back then. It started off pretty slowly I admit. Surviving the Herxes was easier said than done. I drank a whole lot of water with lemon. I slept. I endured and persevered, like you are doing.

Don't let the Herx scare you
I knew in my heart that the more I could manage to raise my core body temperature, the more the spirochetes I could kill. It was my main goal, to kill them, and to try to not kill myself with a Herx.

It wasn't easy trying to get enough exercise. I had a hard time standing up, let alone walking around the neighborhood. But I kept at it, determined to be as proactive in my healing as I could.

Today, ten years to the month from my diagnosis, I'm a martial artist, with two solid years of practice logged on my journey from Borreliosis to black belt.

You don't have to join a Taekwondo school. You don't have to sweat through hours of hot yoga, play basketball, dance, or climb steep mountainsides if you don't want to. But you do have to make a plan to be as proactive in your own healing as you possibly can. The doctors can only do so much. The rest is really up to you.

Did I ever get the IV antibiotics?

In the end, the decision was made for me. I couldn’t afford it, so I passed. These days, I might have been tempted, since now I've got health insurance. But in 2005, it simply wasn’t a choice.

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Lyme treatment choices: Do other people's perceptions matter?

Other people matter, this much is clear. We're social critters who need love and feedback from our peeps as much as we need food and water. But when it comes to our choice of Lyme treatment, can other people's opinions affect the way we perceive ourselves?

Look at a bottle of water, then look at a cup of water. The water conforms to the contours of each vessel. People, largely composed of water, are much the same. We tend to take the shape of the environment or community in which we find ourselves.

Other people's ideas of us have an impact on us. I don't mean to say that they control or dominate us (unless we let them). I mean their opinions and beliefs tend to influence how we perceive ourselves, and fit ourselves into our environment. The closer or more fully developed the relationship, the deeper can be the impact of their opinion of you, whether it is spoken or unsaid. We don't grow, develop, or heal (or become whole) in a vacuum.

Their feeling about a particular Lyme treatment may differ from ours. For example, imagine a scenario in which one person is eager to try treatment with an ILADS doctor, or begin alternative therapy, or an herbal protocol, yet her spouse has a low opinion of alternative medicine. He thinks she needs to stick with their IDSA doctor and go with conventional antibiotics. It may not be an easy decision to make.

We need feedback from people we feel close to, and we hope they support us. It's natural and necessary to seek support and emotional resonance. When someone in your life accepts and loves you unconditionally, hangnails, bad-math skills and all, you feel safe. Intimacy is psychological, physical, and emotional sanctuary, and healing can commence from that place.

Psychologists who study how personalities develop are currently revising their conclusions. The new thinking is that people's dispositions are not fixed, but more like a psychological language that can be picked up through immersion. Other people influence us.

When Lyme symptoms linger or come back long after the antibiotics are finished, the problems are more complicated. Social support systems, friends and family members, may be less available for the person who hasn't rallied quickly back to health.

Lymies do their best to fit in, be part of the norm, but chronic pain or exhaustion makes it difficult to be chipper, or even fulfill basic obligations. Even acting normal can tire out a person who is operating on insomnia and anxiety. Can you count the times you stuffed your pain and faked an answer to the perennial “how are you” with a glib, “fine thanks, you?” It's completely understandable. It can feel incredibly lonely and frustrating, like nobody wants to hear that you are still battling Lyme, especially when it seems that it never gets better.

And from the outside, understanding a chronically ill person's dilemma is not easy. A person with Lyme disease is in pain, and it's often invisible. One of the weird downsides is that people with Lyme often don't look sick. No one can see their bad headache, racing heart, or aching knees. “You look fine,” friends and family members will say. “You must be feeling better.” Beyond this, there is also a cultural undercurrent at work, the subtle shaming of a person who does not act chipper and perky, or at least look cheerful.

We all have many facets. Recognize that other people's vision of you – your uniqueness, depth, and your quirks – does have some impact on your vision of yourself. Others are, in a very real sense, mirrors to our growth and healing processes. This includes your doctor or medical team. So who is your support system, and what do they believe about your approach to healing? The only one who can influence a change in their opinion of you, is you. It's worth paying attention to.
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Stephen Harrod Buhner on mycoplasmas and coinfections


When standard antibiotic treatment fails, many of us give holistic or complementary protocols a try. It takes determination to battle the stealth pathogens associated with Lyme and its coinfections. Where pharmaceuticals bombard the body, herbs are more elegant and complex. They work synergistically when encountering these organisms.

As Stephen Harrod Buhner says, “The bacteria are evolving, we need to, too.”

Buhner, master herbalist and author, is well-known to many in the Lyme community for his informative, meticulously researched, and beautifully written books. His popular Lyme protocol has helped scores of Lyme patients, as it picks up where technological medicine leaves off.

His new work,
Healing Lyme Disease Coinfections is a reference book for people struggling with these common Lyme coinfections. There is increasing evidence that coinfections such as Bartonella and mycoplasmas are the rule, not the exception, when Lyme is present. How do these coinfections behave in the body, and what can be done to alleviate the problems they create?

Q: Who would you like to read this book, and what do you want them to walk away knowing?
A: Well, the book was written for both people with Lyme and Lyme
coinfections and for health professionals and I tried to make it accessible to both groups. These kinds of emerging infections are what some epidemiologists and researchers are calling “second generation” infections. “First generation” are those bacteria that antibacterials were developed for after world war II. In essence, technological medicine already dealt with the easy ones.

The emerging infections, among which are included Lyme and its coinfections, are much more difficult. They tend to be stealth pathogens, much more clever when they infect the body, and they take a different approach. Technological medicine, while a great adjunct, is not capable, at this point in time (if it ever will be), of dealing with this second generation of infectious agents.

So, the purpose of the book is twofold. First: to begin giving a good general sense of how these infectious agents behave and why they do so. This takes a lot of the mystique away from them, lowers the fear level, and allows an intelligent response to treating them. This creates empowerment both for healing professionals and those who are infected.

Second: The standard medical model for treating infections is tremendously flawed and those flaws are rather glaring when it comes to treating stealth infections such as these. I am hoping the book will stimulate the development of a much different approach to treating infections, one that is a great deal more sophisticated than the one currently in use. The bacteria are evolving, we need to, too.

Q: Why should people with Lyme be concerned about coinfections and mycoplasma?
A: Coinfections make treating Lyme much more difficult due to the synergy between Lyme and other coinfectious agents. Research has found, time and time again, that coinfection is much more common than not. Those with coinfections tend to be sicker longer, have more difficult symptoms, possess a lower quality of life, and are much less likely to heal from the use of monotherapies such as antibiotics.

Q: Please give us a basic working definition of mycoplasma.
A: Perhaps the tiniest bacteria known, mycoplasma must scavenge almost all of its nutrients from its host by breaking down host cellular tissues. It has an affinity for mucus membrane systems and cilia and once in the body creates a kind of nutrient starvation in the host which results in a wide range of symptoms, much as lyme does.

Q: What is mycoplasma's relation to Lyme disease? How long have medical doctors been noticing its relationship to Lyme?
A: Mycoplasma, like most of the coinfections, is very new to medical doctors. Like most [coinfections], it has only come to prominence in the past 15 years or so, more so each year. As with the other coinfectious agents, it is spread by tickbite (among other things). As researchers have looked deeper into the Lyme epidemic, they have found that mycoplasma is a much more common coinfection than realized.

Q: Please elaborate on the issue of chronic Lyme -- the idea being that many of us go 'chronic' because we were not diagnosed early enough for treatment to be fully effective. How can a working knowledge of herbal remedies help?
A: About 60 percent of people who are infected with Lyme can be helped by antibiotics. Five to ten percent are not. Thirty to thirty-five percent appear to be helped initially but relapse. Added to that are the very large group of people who are never properly diagnosed with lyme. About half of those heal naturally over time, the others do not.

In consequence there is a large group of people that develop chronic Lyme. In that population, about half will respond to a fairly simple herbal protocol, the others will not. Herbs are much more elegant medicinal agents than pharmaceuticals in that they contain hundred to thousands of complex compounds that work together synergistically when confronted by disease organisms.

The plants have been here much longer than people and they have developed extremely sophisticated responses to infections. when we take them internally, those responses are medicines for us. The very nature of stealth pathogens and their wide impacts on the body make herbs a very useful approach.

In essence, successful treatment of Lyme infections needs to address: immune status, inflammation dynamics that are breaking down cellular tissues in the body (cytokine cascades), specific symptoms, and the long term damage, especially in the nervous system, that lyme causes. Pharmaceuticals are useless for most of those. Each of those problems can often be addressed with one or two plants due to the complexity of compounds in the plants.

Q: Please say a few words about the difference(s) between plain old resveratrol capsules and Japanese knotweed, and why you prefer whichever you prefer.
A: I always wanted to use Japanese knotweed root itself for treating Lyme, however, when I first wrote the book there were no decent suppliers for the herb in the U.S. It turned out that a number of resveratrols were made using knotweed root, in fact what they were were actually standardized knotweed root, so that is what I first suggested.

Now that the herb has proved so helpful to so many, a number of growers and harvesters have made it commonly available. I like the whole, powdered, root the best for several reasons. First it is much cheaper than the capsules. Second, I think that it is much easier to take these herbs if the powder is simply blended into liquid and then drunk. Taking all those capsules is a pain.

And, just my own preference . . . I like wild plants or those organically grown. They haven’t been mucked about with; there is much less standing between us and the plants.

Thank you, Stephen!


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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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Yolanda Foster speaks about Lyme

"The light had gone off in my brain." Yolanda Foster speaks about Lyme.

“We live in the most extraordinary country, with the best doctors in the world. But the truth is, we don't have proper diagnostic testing,” Real Housewives of Beverly Hills cast member Yolanda Foster told the audience at the Gala held for the Lyme Research Alliance on April 6. The LRA honored Foster with the Star Light Award, in recognition for her advocacy and for serving as a role model for people suffering with Lyme.

In her acceptance speech, Foster describes her frightening decline from “being an outspoken, multi-tasking social butterfly, to being trapped in a mentally paralyzed cocoon.” Doctors did not find any indication of Lyme disease in their standard blood tests, so they missed important clues. She knew something was wrong, intuiting that it may have been an infection in her brain. But doctor after doctor misdiagnosed her, advising her to cut back on her busy schedule. She was put on subscription drugs.

“Sleeping pills, Adderall, steroids, and anti-depressants,” she recalls, reciting the litany of drugs she was given. “[But] I was so
so not depressed,” she adds. Increasing frustration and annoyance were closer to the mark.

After a two-week stay at Cedars-Sinai Hospital in Los Angeles that achieved nothing, Foster returned home to bed. Hopeless, and believing that in her native Europe she might find a doctor to help, she to embarked on the long flight from California to Belgium. After a test showed spirochetes in her brain, she finally received a correct diagnosis of Lyme Neuroborreliosis and co-infections.

Thankfully, zeroing in on the pathology leads to treatment, but as anyone who has been through this crazy-making process knows, Lyme treatment is a double-edged sword. To begin with, it is not so cut and dry. And antibiotic therapy also causes Herxheimer reactions which can be as debilitating as the symptoms themselves. Friend Suzanne Somers led Foster to the Sponaugle Wellness Institute in Clearwater, Florida. Foster reluctantly left her family to go for a 6-week treatment. She reports that now she feels about 80% back to normal.

The LRA event raised more than $1 million to fund research for finding a cure for Lyme and other tick-borne diseases. Doctors Steven Schutzer, M.D., of the University of Medicine and Dentristy of New Jersey, and Mark Eshoo, Ph.D, director of new technology at Ibis Biosciences, were also honored at the Gala and received an award for their significant contribution in research and treatment in the quest to find a cure for Lyme.

Please watch Yolanda Foster's speech.
http://www.youtube.com/watch?v=tO8ZDvwTXKw

Interview with director of the Lyme Research Alliance
http://www.youtube.com/watch?v=-uDyb0NyRog



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Paying it forward = Stress relief

I was stuck. Attempting to turn left into a traffic jam, confronted with cars backed up as far as I could see. Several vehicles had fresh-cut Christmas trees roped to the roof like hostages. The setting sun was blinding all the westbound drivers. I started to settle in for what looked like a long wait for a break.

Suddenly, a driver stopped to wave me in. Hallelujah! I couldn’t believe it. I watched as everybody in the long line of cars behind her was forced to stop and wait while I made my turn. With a wave and a smile and a tap on the brakes, she had flooded my heart with hope and love for my fellow humans. If she hadn’t voluntarily stopped like that, I might still be sitting there.

An hour later, stuck in a checkout line held up by a woman buying 4,000 rolls of ribbon, I overheard the couple behind me. They were griping quietly at each other. I encouraged them to go ahead of me, and they suddenly smiled and said thanks, both wishing me a Merry Christmas. It felt so nice to pay back the generosity that had been extended to me that I actually wished there were more shoppers standing in line to wave ahead.

In times of stress, whether from traffic, sickness, or other events, it seems we have a choice. We can’t control the events themselves, but we can choose how we react. The glee and gratitude I felt for that driver infected my mood instantaneously. In every crowded lane and line for hours afterward, I enjoyed interacting with clerks and shoppers and felt genuinely uplifted with every sincere smile and upbeat thank you. It got me thinking about generosity and vulnerability.

We’re more vulnerable when we’re ill and suffering.
Pain breaks down the normal barriers that healthy people take for granted, the psychic boundaries we put up in a grocery store or a crowded elevator. When we’re spending most of our energy trying to feel normal or attempting to breathe through the pain in our muscles, our skin, or the fog in our mind, I think we’re more naturally vulnerable and open to other people’s moods and actions.

This open attitude of heart or viewpoint can make us feel weak. After all, it is only the strong ego that can construct barriers and know exactly who it is and what it wants. But these days, having returned from the trip to the underworld of Lyme disease, I feel, at times, much less attached to the picture of who-I-think-I-am. I feel more porous, less fixed. That fluidity has its own sort of strength.

I wish I could thank that anonymous driver for her small gesture of kindness, which felt to me like a light of consciousness in a murky sea. It could have worked the other way. We’ve all been the recipient of an angry gesture by an impatient driver (or we ourselves have been that angry driver), and we know how that affects us and others too. But as the recipient of her generous action, I went on my merry way with an attitude of gratitude. Like a fairy godmother, she’d waved her wand and changed the landscape from black-and-white to technicolor. In the crowded store, I passed her kindness along like an unexpected gift, and I bet it’s still working its way around town.

Serious illness not only brings suffering, it has another side which is filled with gifts if we are open to receiving them. When I take a genuine, hard inner look, I know I have Lyme to thank for the tremendous blessings in my life now. Riches beyond measure. Among them, more patience, resilience and humility, and an extraordinary awakening of consciousness which is largely unexpected but certainly profound.

Here’s to the spirit of gratitude and vulnerability. What are you grateful for?


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How much is too much exercise for Lyme patients?

We take a cross-training approach to healing from Lyme. This includes body, mind, spirit and shadow (psychological) exercises. Some Lyme patients are just too weak, especially in the first stage, to address the needed physical exercise. Indeed at times it is not wise, if you are dizzy or otherwise debilitated. But there comes a time when you really just have to move that body! I know from experience.

Anaerobic exercise, such as stretching, sprinting and weightlifting, can help you heal from Lyme disease. But don’t overdo the aerobics, according to
Dr. Joseph Burrascano and other Lyme experts. They say that too much aerobic exercise, such as walking, jogging, jumping rope and skipping, can be detrimental.

One reason is that vigorous jogging or other aerobics open up the blood-brain barrier, allowing more
Borrelia bacteria to enter the brain. Too much, too fast aerobic exercise can also deplete the adrenals and decrease the specialized cells that are part of the body’s immune system, the T-cells. T-cells are the highly skilled militia of the immune system. They hunt and destroy invading bacteria. They also alert other cells to do their jobs. The adrenals can be depleted by the low-grade, ongoing stress of chronic illness, by not getting enough sleep, and in many other ways.

Tai chi and gentle yoga, chi gong, and other Eastern body-mind-spirit exercises are very beneficial. Depending on the style of each of these practices, they are considered anaerobic. Mindful stretching as you get out of bed in the morning can warm up your muscles and make you feel a smidge better. If you’re not feeling up to snuff, but want to do something, simply take a few slow, deep breaths. Breathing from the diagram can relax and bring your body and mind into harmony.

I’ve gotten hooked on yoga this year, and finally made it a habit. I’m also a big fan of using the breath for relaxation, and finishing with a meditation.

What is your exercise routine? Have you ever overdone it?




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Letting go of the fear of Lyme symptoms

A friend popped in while on a road trip last week. She and I have never met in person before, just over Skype, for business. During dinner we discovered that we’d both had Lyme. And we’re both recovered.

Has that ever happened to you? Someone you’d never suspect turns out to be a recovered Lymie? I was really taken by surprise, because Stephanie is someone I’ve always known was brilliant. She’s loquacious, funny, sensitive and inquisitive. She’s verbal. We’re both English teachers, and that tells you something about our common love of language. (And our common fear of and frustration with brain-fog!) But she’s also a Fulbright Scholar (which I’m not), she worked for a megalithic TV corporation for many years, and she is a bona fide cinematographer. And she’s been honored by government officials for her humanitarian efforts that led to actual laws being changed. And...she’s had Lyme disease.

Okay, enough of my brag about her. Suffice it to say, we’ve all known people who seem to have a lighted star over their heads wherever they wander in this world. She’s just one of those. But at dinner, as she lowered herself into our Japanese-style seating (yes, we eat sitting on the floor), I heard her say that she’s been having some stiffness ever since Lyme disease.

My ears perked up. I couldn’t believe it. She’s just returned from a year in China, and is on her way to Micronesia for two years. I leave my house to go to the grocery store every few days. I have what’s called a low threshold of adventure, which is I believe, the medical term for it. Stephanie’s got just the opposite. Little wonder she can tell a story and make you laugh, get hired on a dime and make a friend in the time it takes to wash your hands. She’s got no fear of the world. Did I mention she lives on a houseboat when she’s Stateside?

Her neck, however, was stiff the night she had dinner with us. She and I had a lot to say to each other about Lyme, but we talked about everything else under the sun that night too, and that’s another sign that we both live post-Lyme lives, isn’t it? But she was very interested in hearing about sugar’s effects on Lyme, and we traded notes on our workout routines. Turns out she’d been putting her sore back and neck down to age. But she found out that my yoga routine is keeping me limber and strong, and I have no soreness to speak of (not Lyme-related anymore, that is). She vowed to get better about regular exercise. I hope she keeps her promise to herself, because I know how much it helps me. We talked about our love for learning new skills and languages, and how that helps our mental muscles stay toned and flexible. And she has set the bar high for me. I am seriously going to consider traveling abroad soon. Letting go of the fear, and the image of myself as a recovering sick person is the one last stand to truly embracing wellness.

Do you have a remarkable friend who has walked a path you’d like to walk? Would you do it if you didn’t fear Lyme disease, or its effect on you? Please tell me about it. I’d love to hear your perspective.

For further reading about the four fundamental dimensions of healing from Lyme, click here.
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Babesiosis

Ticks! How do I hate them? Let me count the ways.

Babesiosis is known as a co-infection frequently accompanying Lyme. But it is no mere side-kick. The latest threat from ticks is not a new disease, but cases seem to be on the rise especially in the northeastern US. Babesiosis is described as a malaria-like illness which can be life-threatening in some people. It is caused by the parasite babesea microti, which invades and destroys the body's red blood cells.

Unlike Lyme disease, Babesiosis will not present with a
bullseye rash. Symptoms from the outset are fever, sweats, fatigue, bad headaches and malaise, or a general feeling of un-wellness. 

People who are at greatest risk of fatality from Babesiosis:
• are on immuno-suppresant drugs
• lack a spleen
• on chemotherapy
• infants & elderly


Take precautions to prevent exposure to ticks, which can hang out for days on the tips of grasses, and hitch a ride on chipmunks and other rodents if there are no deer around.

In the summertime,
ticks are in the nymph stage, at their tiniest. Just to up the ante of the risk, many of us spend more time outdoors enjoying the warm weather and longer days. This means that when you come inside, tick-check time is even more important than ever. Get the kids in the act. Place a full-length mirror in the foyer and establish a habit of helping each other search for uninvited critters.

Be well, for goodness sake!

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Lyme disease at the center of JP Morgan failures

A tiny tick can wreak big damage. We know the terrible health issues that Lyme bacteria and its attendant co-infections can cause one single person, affecting them on every level and in every aspect of life.


But people don’t exist in a vacuum. For every person suffering with Lyme disease, numerous others are affected in countless ways. They don’t have to have the disease, they may just be related to, work with, or care for someone who does: their co-worker, aunt, Facebook friend or significant other.


An interesting article in the New York Times reveals that Lyme disease lies at the center of the discord at JPMorgan. Turns out that a key leader, who evidently knew the critical importance of managing relationships, was unable to preside over meetings as usual because she got Lyme. And due to the absence of her level-headed influence, certain people lost sight of their duties. Narcissism abounds in power positions.


The NYT story reports that the bank’s Chief Investment Officer, coolheaded executive Ina Drew, had expertly handled key personnel relationships and directed the organization during peak moments of the brutal financial crises of 2008. However, her guidance was dramatically absent during 2010 and 2011.


“But after contracting Lyme disease in 2010, she was frequently out of the office for a critical period, when her unit was making riskier bets, and her absences allowed long-simmering internal divisions and clashing egos to come to the fore, the traders said.”


Conference calls between deputies in Ms. Drew’s New York and London unit “devolved into shouting matches,” according to a trader quoted in the article. Without her to expertly manage negotiations between divisive personalities, egos spun out of control and distracted everyone from their duties.


Of course, Lyme disease is not the sole cause of the banking giant’s financial woes. For our purposes here, the financial failures are besides the point. What I find intriguing is how the story clearly illustrates the power of relationships, the impact of leadership, and the mayhem that resulted because one key person in a position of leadership got Lyme disease.


The impact of Lyme on our relationships
Think of the way your own suffering has impacted your relationships, how it has colored the everyday decisions of your friends and loved ones. Chances are, you’re not at the center of a monolithic banking meltdown. But like all of us, you have duties and responsibilities. You may be the head of a family or company that depends on you financially, emotionally or otherwise. How do you manage to cope with the changes Lyme disease has forced on you? How do they manage without you, when they face meltdowns of their own?


Another key theme woven through this story is vulnerability. We work hard to make something of our lives, pour endless love and resources into developing and protecting our families and our life’s work. It’s easy to fool ourselves into thinking we’re invulnerable to disease, or to anything so small as a tick.


It comes as no surprise that ticks will bite the movers and shakers of the world as easily as the working class. Perhaps because of her notoriety, Ina Drew’s case of Lyme will serve to shed more light on the disease, the numbers of people affected, the ease with which Lyme can be contracted and the difficulties that so many of us encounter in getting diagnosed and seeking treatment.


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Lyme Success Story! Treating every angle

Not too long ago, Jerry was preoccupied with his professional responsibilities and other commitments. Resolutely running the treadmill, he pursued his multiple roles as a husband, father and self-described Type A quite unconsciously.  But around May of 2010, he began “to feel really crummy.”  Not merely tired from work, he was exhausted. He ached all over, his glands were swollen and painful, he suffered headaches and disturbing muscle twitches.

At first he brushed it off as a bad flu and continued on his daily routines. He did not have a bull’s eye rash.  But then his symptoms took a turn for the worse, the muscle twitches increased and he felt he was losing control. He decided it was time to get tested for Lyme. The result was negative. However, test results were positive for an infection that typically accompanies Lyme: Ehrlichia. Antibiotic treatment began but he continued to feel worse, even taking Doxycycline. At that point, he took the initiative to search out a doctor in Minnesota who specialized in Lyme and could really help him.

Jerry found Dr. Karen Vrchota. She sent his blood to be tested by IGenEx, in Palo Alto, California. In addition to three co-infections, Ehrlichia, Bartonella and Babesia, Jerry was positively diagnosed with Lyme.  She recommended further treatment including some of Dr. Cowden’s protocol, such as Samento, Burbur and Parsley tinctures.

As Jerry worked with Dr. Vrchota, he branched out to discover many more proactive methods that would allow him to feel in charge of his own therapy. He realized that truly healing from Lyme disease demanded coming at it from every angle, not simply by taking antibiotics and herbal medicines. At the suggestion of Dr. Cowden, he focused on getting rid of the mercury, aluminum and other heavy metal poisons and toxins in his system. He adopted a new approach to exercise and nutrition. Following the advice of Dr. Burrascano, he began cardio as well as strength training exercises. He talks about the difference he began to feel as he focused on heating up the blood and getting it flowing. Spirochetes hate heat and cannot survive it. Therefore, physical exercise is super important to include in a Lyme disease protocol.

In his search for wellness, he has been seeking advice from experts in many fields, psychological as well as physical, spiritual as well as emotional. He feels confident that he’s now about 95% healed, and is eager to reach out and help others facing similar health challenges.

Over the past couple years, Lyme disease has become one of Jerry’s greatest teachers. He has rediscovered the simple joys -- tossing a ball with his kids, slowing down each day to practice mindfulness meditation and noticing life’s small blessings.

Hearing him tell his story, it’s easy to see that this once-Type-A person has a loving and generous heart.  You can sense that something in his nature has softened and profoundly changed and evolved.  He talked movingly about how he is now deeply committed to “giving something back,” and I’m really pleased to be able to share our recent conversation in our Lyme Success Stories series. You’ll hear him discuss the challenges he faced in getting properly diagnosed, his treatments, protocols, exercise routines, and the doctors and other experts who are guiding him as he turns his life around.  

Jerry has redefined the meaning of success in his life and feels endless gratitude for the things we tend to take too easily for granted. By approaching Lyme disease comprehensively and from every angle, his healing is happening on many levels of his life. Yours can too.

For additional information on healing Lyme from every angle, see Beat Lyme!

Join to listen to the interview.
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Mind your brain health!

Whether we’ve recently received a diagnosis of Lyme disease, or we’re dealing with recurring symptoms, eating right and exercising are core considerations of a good protocol. We know the importance of foods rich in Omega-3, lean proteins, and a rainbow of vegetables which are high in antioxidants and key vitamins. The physical health of the body is usually our main focus in healing from Lyme.

But what about mental health? You know, brain fog. One of the most disturbing things about Lyme is that the bacterial complex can actually cross over the blood brain barrier. That means it may affect your cognitive abilities, the ability to pay attention; your speech centers, creating stutters or slurs; your memory; your balance and more. I’ve found that
herxing can bring on a ridiculously frustrating case of brain fog, even when other symptoms have faded.

What is really hard to explain to someone who has never been through it, is the unique torment of days filled with sensations and events that you can’t know with certainty even exist. Did I hallucinate that smell, those sounds, or is there someone else in the house? And if that isn’t real, how can this physical pain be so tortuous? My heart goes out to anyone who is at that stage of Lyme.

As Winston Churchill famously said: “When you’re going through hell, keep going.”

Having been dragged by Lyme through the murk and come out on the other side, I can now look at that component of the disease with some objectivity. Yes, it’s crucial to take your
antibiotics (whether conventional or alternative), nourish your body with whole foods and detoxifying fruits like strawberries and blueberries, exercise and stretch whenever possible, and by all means rest.

But because of this mental component of Lyme, it’s also absolutely necessary to
exercise our brains, and therefore help keep our minds fit. The general rule is to try new things.

Try this:
Play music - dust off your violin or sit down at the piano
Go to a museum or concert - if you’re not well enough to do so, take a virtual museum tour online


Play games - try lumosity.com or brainmetrix.com
Paint
Write
Cook
Play Sudokus or do crossword puzzles
Read a book - on an iPad or the old-fashioned paper kind
Try learning a language

Almost anything can be learned online, either with a live teacher/virtual classroom or software program. If you have a yen for learning something, from Yoga to Mandarin Chinese to how to improve your fingerpicking technique on the ukelele, the important thing is to try something new. When you can.

Make a promise to your mind that you’ll do whatever you can to help your brain stay fit so that when you come out on the other side of Lyme disease, you will be smarter and healthier than ever. For it’s true what Nietzsche said: “That which does not kill us makes us stronger.”

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Sweet Alternatives: Splenda or Stevia?

Have you thumped your thymus lately?

The thymus is located in the chest, in front of the heart. It’s part of the adaptive immune system. You may recall as a kid seeing Tarzan pounding his chest, right before leaping onto a vine and sailing across the treetops. The thymus, which decreases in size after puberty, is situated right there in the chest behind the sternum. The King of the Jungle and his gorilla pals pounded their chests as a show of strength and dominance. Some physical therapists say that thumping it gently will help stimulate it.

Eating Splenda shrinks it. Why is this bad? Because T-cells develop in, and are educated by, the thymus. Splenda can damage the T-cells, according to Jean Reist, a nurse who has treated over a thousand people diagnosed with Lyme disease. When treating Lyme, the last thing you want to do is cause damage to your adaptive immune system.

Lyme-literate experts advise us to avoid sugar. So what do you replace it with? Honey and agave sweeteners may contain nutritional goodness, but they are processed by our bodies the same way that sugar is. Stay away from Splenda (sucralose), which contains chlorine.

I’m happy to see that some nutritionists recommend stevia nowadays. I switched to stevia tincture when I was first diagnosed with late-disseminated Lyme symtpoms. Stevia tincture is made from the stevia herb, which has small leaves and looks like any other hillside weed. My mom, who has an amazing green thumb, grows it in a container on her deck. If you ever get the opportunity, bite into a stevia leaf. It’s unbelievably sweet, and it’s pure plant. No sugar. Nothing fake. This herb is native to South America, used for centuries to sweeten tea and make mate, and although popular for decades in Japan and elsewhere, it’s now in widespread use in the US, following approval from the FDA. Still, if you buy stevia at the grocery store, read the label. Some brands actually add sugar! I use KAL Stevia tincture, an alcohol-free, zero-calorie blend.

How far can diet and exercise go toward treating Lyme? There is no question that antibiotics are well-advised and necessary towards a Lyme disease treatment. But if there are lingering symptoms or problems, diet and exercise seem to be critically important.  In my experience, healthy shifts in diet and making the effort to maintain a regular workout practice have made a huge, positive difference. I know that without having changed my habits I wouldn’t be in very good shape at all.

Weird as it sounds, I count having had Lyme disease among the biggest blessings in my life. Perhaps it is the biggest. I know you’ll understand what I’m saying. Although I’d never have voluntarily dived into the wretched state that it put me in, if I hadn’t been dragged under by Lyme, I strongly doubt that I would now be making the daily efforts I now make to live a radiantly healthy life, in body, mind & spirit! As you know, healthy living is not something that happens by accident. It takes mindfulness. I eat live foods, and drink freshly-made juices, mostly containing fresh organic veggies and high-fiber, high-protein foods such as beans and quinoa, to improve my skin and elevate my energy. I hit the gym at least three times a week, mainly doing interval workouts and strength training with weights. Exercising helps oxygenate my blood, strengthen my muscles and improve my endurance. I also think positively, which is not too difficult considering that post-Lyme, I feel blessed to be alive at all!

I also love to learn from other people. My mom is in her 80s and still healthy, beautiful and active, taking dance and Tai Chi classes and enjoying spending time with her friends and family. She never bought us much junk food or soda pop as kids, and she didn’t drink alcohol or smoke cigarettes. Instead, she shared her excitement over vibrant fresh greens and delicious fruits straight from the garden or the local farmer’s markets. When we sat down to dinner, she and my siblings and I often lingered afterward just talking and enjoying each other’s company. Recently I asked about her secret to living a long, healthy life. She thought about it for a minute and said, “I don’t poison my body and I think positively!” I love my mom. What a wonderful role model.

Sadly, I have friends ten years younger than I who suffer with RA and other autoimmune deficiencies, who refuse to examine their dietary habits and sedentary lifestyles. They depend on the medical professionals to help heal them with medicines.

If you decide to take an active role in your own healing, begin by recognizing that shifting your diet and starting an exercise practice takes determination and regular effort. Realize that your Lyme doctor may be an excellent diagnostician, and she may have prescribed antibiotics and been of great help to you in the early stages, but she may not know bupkes about nutrition, or how some foods or alternatives such as Splenda may contribute to, or denigrate, your progress.

Medical doctors don’t study nutrition in medical school, not with any depth. While it would be nice to think that they could be our role models for healthy living all-around, that isn’t in the curriculum. So unless your doctor is also educated in and interested in the way diet affects healing, it’s possible that you know much more about it than he does. There are indications that this is changing, and that more people who become doctors are also interested in how the whole healing process works. This is a wonderful trend, and I have a feeling it will continue. One of my friends says her doctor expects his patients to have read up on their condition online, and he encourages them to dialog with him about what they learn there.

Does your medical doctor know about the role of nutrition and exercise in treating Lyme? Do you talk with your nurse practitioner or doctor about diet and exercise as you heal from Lyme disease? Who are your role models for healthy living? Drop a line or leave a comment. I love hearing from you!

Now go on, nobody’s looking. Thump your thymus!

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An integral approach to healing from Lyme

Lyme affects all the systems in the body, including the brain and therefore the mental state. It seems important to recognize that Lyme, as a complex disease that can be very hard to heal from, must be treated from as many angles as possible.

I’m not writing about this approach simply because I read about it somewhere and thought it sounded good. I’m a walking, talking example of someone who beat Lyme because I practice an integral approach myself. It begins with recognizing that in any given event, there are four perspectives that represent the fundamental dimensions of an illness, as stated in the post above:
  • Physical state
  • Mental state
  • Cultural views
  • Social systems

We’ve already touched on the first two angles, and explored how you can see one but not the other. The doctors can treat your physical body with medicines while often missing entirely your state of mental-emotional health. Sometimes mental problems can clear up when only the body receives treatment. Other times it takes another approach.

Cultural views, the third angle, include other peoples’ thoughts and opinions about your experience. Think about the impact that your family members and friends’ ideas about your illness have influenced or affected you. Whose advice do you seek out in times of trouble? Your psychologist, your BFF, your mom, and the opinions of other important tribe members all play a role in your approach to healing Lyme. And in many cases, this has proved itself not a simple disease to heal. What happens to the people who have experienced recurring symptoms?

Say, for example, that your manager at work came across an article that restates the IDSA’s guidelines for Lyme treatment, and he knows you have completed the requisite three weeks of doxycycline when you suddenly begin to complain of arthritis or fatigue -- again. If he believes hands-down that the IDSA must know the optimal treatment for Lyme, he may not believe that you are still not well. He may even suspect that your symptoms are “all in your head.”

I remember when a writer friend whom I trust and admire queried me about my pain. I had confided at lunch that I was having trouble writing because I couldn’t remember from one sentence to the next what I had just said. You look fine, he insisted. I was hurt. It felt like betrayal. He didn’t believe me, and I hated being put in the position of having to defend my illness. The opinions of others still hold sway even if they’re wrong.  On the other hand, when others believe in us and hold a space for our healing, it can feel as liberating as fresh air. It opens the way for our progress.

The fourth angle of the integral approach is the social systems. Think of the health care system, and whether or not you can afford access to coverage. Can you not get access because you’ve been denied, or because you had to quit your job and can’t afford COBRA? Systems are simply there whether you are aware of them or not. The emergency room, for example, is a social safety-net system. If you haven’t been privy to a doctor’s care for one reason or another you may wind up in the ER in a health crisis. That’s an example of falling unintentionally into a social system that may be your only option. An example of an intentional use of a system may be your own research into alternative care, which leads you to an integrative doctor and a trip to the pharmacy for herbal tinctures and supplements.

As you can see, the social systems available to us are largely influenced by where we live, which country, and how near or far we are to the kind of doctor or medical team we need. Many people with Lyme disease have come up against the cruel realization that not enough medical professionals are educated about diagnosing or treating Lyme. Numerous people have had to travel by air across state lines, sometimes thousands of miles, to get to a doctor that will give them appropriate treatment. Social systems are not incidental to the story. They lie at the heart of it, influencing the outcome just as cogently as do the other three angles.

Bear in mind that these four perspectives are not unique to illness but always arise naturally, and always together, in any given event you can think of. Even when you’re healthy you can still identify all of these dimensions. Each area only tells a part of the story. Each part contributes to our experience as a whole. They cannot be separated.

Once we recognize how these dimensions work together in our day-to-day life, it’s easy to see where things are functioning well and where they aren’t. Being aware of dysfunction gives us a much better chance to change it. And to get better.

Learn more about this approach on the
Beat Lyme page.
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Detox diet and chronic Lyme

The trick with any Lyme treatment is that detoxing will almost certainly bring on a Herxheimer reaction, referred to quite generously by some as a healing crisis. As anyone who’s experienced a Herx knows, it can be as bad as or worse than the Lyme symptoms themselves. Personally, I find it impossible to tell the difference.

What is a Herx? The Herx occurs when the Lyme bacterial complex dies from an attack by antibiotics or other means, and releases toxins that signal reactions from the body’s immune system. Herxing can be triggered at a number of points throughout the healing process.

Detoxification, once the catch-word of glitzy drug rehab centers, is now more or less a Hollywood cliche. Almost every health & beauty magazine or website promotes a different detox diet that in theory will cleanse your body of toxins that assault it every day: smog, sugar, alcohol, pesticides and artificial sweeteners. If you suffer from a chronic condition such as post-Lyme syndrome or chronic Lyme, proponents of detox diets say you’ll benefit from periodic cleansing.

Current, popular ways to cleanse include the ‘Master Cleanse’ which consists primarily of drinking lemon, water and maple syrup. Many consider fresh raw vegetable juices a healthy basis for a good detox diet that can help people slim down while infusing the body with necessary enzymes and other rich nutrients. These types of diets are believed by some to boost the body’s elimination mechanisms through internal cleaning.

However, there may be no scientific basis for cleansing diets. Dr. Peter Pressman of Cedars-Sinai Medical Center in Los Angeles states that the body’s multiple systems, such as the liver, kidneys, and GI tract, already do a perfectly good job of cleansing the body and eliminating toxins. He claims there is no evidence to suggest that detox diets improve the body’s natural mechanisms.

Lyme patients must be vigilant about popular trends. Changing your diet or engaging in something radical such as a juice fast might even be a bad idea, especially if you are on antibiotics or some other Lyme treatment. Always discuss with your Lyme doctor or medical team before changing your diet. Cleansing can be dicey for people with active Lyme disease symptoms. The cleanse may trigger a Herxheimer reaction which would affect the body’s immune system.

Whether you think colon cleansing is good and necessary or not, we can all agree that keeping things moving is best. By drinking lots of filtered water and eating foods that help prevent or relieve constipation, we can do our best to ensure that our body is able to eliminate the toxins from the Lyme bacteria as well as the meds, while undergoing Lyme treatment and post treatment. Be sure to drink about 8 glasses of water daily, as it helps digest the fiber, as well as softens and adds bulk to the stool. When I am experiencing a Herx, I drink extra water and it always seems to give me relief, almost immediately.

What are the best foods for preventing or relieving constipation?

High-fiber foods such as barley, quinoa, brown rice are helpful. So are flaxseeds, beans, lentils, artichokes, sweet potatoes, pears and green peas. If you’re avoiding gluten, don’t eat wheats, barley or rye. Quinoa makes a great breakfast cereal.  I add a little coconut oil, stevia and cinnamon, and toss on a teaspoon of flaxseed for good measure. And of course steel cut oats that are gluten free are highly recommended in a healthy Lyme diet, because they’re so good for our skin in addition to their fiber-rich content. We should be eating about 20 - 35 grams of fiber per day, according to the NIH.

Additionally, people with a magnesium deficiency are found to be at greater risk for constipation, so include plenty of magnesium-rich sources in your healing Lyme diet. Nuts such as almonds and cashews are high in magnesium, as are baked potatoes in their “jackets” as my mom used to say.

Refined or processed foods such as white bread, white rice, and white pasta are not your friends if you want to promote pooping. In addition, ice cream, cheeses and meats are high in fat and will work against you in your quest for a good bowel movement. Cut these processed and sugary foods out of your diet and replace them with high quality, high fiber foods. You’ll begin to see and feel the difference.

For now, we may not have the answer to healing chronic Lyme, but in my experience, my quality of life -- and the amount of energy I have for living -- increases immensely the more I shift my diet into the healthy zone. Over the years, each and every person I’ve interviewed for our Lyme Success Stories series has also told a remarkable tale of having healed more quickly after making healthy changes to their diet.

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Rethinking Lyme disease treatments

Whenever somebody else talks about their battle with Lyme, whether it’s about the symptoms, diagnosis, or treatment itself, I get a deep sense of validation. It’s a mixture of relief that I’m not crazy and empathy for the person who went through a hell-realm that I know intimately. My dad’s generation called these foxhole tales, shared experiences while hiding from a hostile enemy.

Celebrities’ stories have a potent affect on our collective notions about disease. When someone famous for car racing or acting or novel writing, or when the President of the US (GW Bush) has fought and defeated the same powerful foe as we have, we want to know their stories. We may not be equal in status but we’re equally brought to our knees by the Lyme bacteria. Hearing their stories about dealing with Lyme might trigger an idea that works, or give us strength to try a new approach.

Parker Posey was diagnosed with Lyme disease in February 2009 and received the standard IDSA Lyme treatment of antibiotics. After completing the round of antibiotics and experiencing a return of her symptoms, she decided not to continue on a second round and instead turned to a holistic approach involving detoxification, diet and supplements. Her experience led to her involvement with a documentary film by rethinkingcancer.org, the story of five cancer patients and one person with Lyme disease who all made the decision to treat their diseases through alternative means, and who have all lived years beyond the time their doctors predicted.

Posey asks: “How can a natural approach to healing oneself be considered so unconventional? Why do we think we can't play an active role in getting healthy? Why do we give ourselves away so easily to pharmaceuticals that deplete our system and confuse the natural healing process?”  

Lyme patient David Walant has been free of Lyme for 20 years. Listen to him in this brief clip from the webpage of rethinkingcancer.org.

Karen Allen, who played opposite Jeff Bridges in Starman, was interviewed in 2010 on the blog, Macrobiotic Adventures, about her difficult journey through Lyme disease and back to health. Her story is familiar to almost everyone with Lyme, it’s a series of tortuous misdiagnoses and failed cures, and then finally a way through the pain and confusion and back to a normal, creative life. The interview is fairly long, but very intriguing. Karen talks about her dynamic healing experience with the parasite zapper invented by Canadian Dr. Hulda Clark.

I hope you find these clips inspiring, as I have. Remember you are not alone and you’re not crazy. Change your diet if you think it will benefit you. Change your sedentary life and exercise every single day. Stay limber, stretch and relax daily, and surround yourself with loving friends. It’s your life and it’s worth every precious moment you have to get well.

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How to recognize Lyme symptoms in your child

Probably the most frightening thing, aside from contracting a Lyme infection yourself, is discovering that your child has Lyme. Parents number one role is to protect, after all. We are the first line of defense between our kids and the big, bad world. We’re hardwired to keep broken glass, vampires and werewolves at bay, to say nothing of the lions, tigers and bears. But some adversaries come in small sizes. Sometimes they’re even invisible to the naked eye.

Lyme shares a long list of symptoms with a number of other illnesses. So what sort of treatment do you give if you don’t know the difference between one disease and another? How can you tell whether your kid has the flu or he’s suffering with Lyme? You find your mind racing to find answers, to fill in the blanks. But, you may reason, you never saw a tick so therefore it can’t be Lyme.

One thing we have to bear in mind is that it’s possible to get a tick bite that nobody notices. You may not have seen any ticks on your child, but if he or she was playing in an area where ticks are prone to live, it is possible that your child was exposed.

I’ve heard some medical doctors say that Lyme disease cannot be transmitted from a tick who hasn’t been attached to a person’s skin for less than 24 hours. I’ve heard them say 36 and 48 hours as well. But according to noted researcher and former Yale post doctoral-operative fellow in therapeutic radiology, Dr. Eva Sapi, there is no evidence to suggest that Lyme can’t be contracted in less time than that. She and her research students in Lyme treatment regularly go on tick-gathering forays in the forest near their New Haven, CT research lab. She has seen people contract Lyme disease when a known-to-be infectious tick has only been attached to their skin for an hour or two, no longer.

People often make a mistake in thinking that if the
bull’s-eye rash that is so closely associated with Lyme isn’t present, than it just can’t be a Lyme infection. However, that simply doesn’t seem to be the case. Although a Lyme infection can be the most likely suspect if that rash is present, the absence of the rash does not indicated that it isn’t a Lyme infection. So if you haven’t seen a tick, and you don’t detect a skin rash, what do you look for?

Lyme symptoms in your child may include the following:

flu-like body aches that don’t improve with sleep
fever
headache
rash
crushing fatigue that is not relieved with rest
joint pain
sensitivity to florescent lights
night sweats
nausea and vomiting
insomnia
forgetfulness and confusion

If you suspect that your child may have Lyme, please try to find a good
Lyme literate doctor. Call ILADS and ask them to give you the name and contact info for the doctor or pediatrician nearest you. Don’t be surprised if a knowledgeable Lyme doctor, who suspects that your child may have a Lyme infection, starts treatment with antibiotics before test results are in. An untreated infection can involve the brain, heart, joints and all the systems of your child’s body. Early treatment for Lyme is so very important, as the disease has three stages. Treatment during stage one is the most reliable way to prevent further progression of the disease.


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Diagnosis and treatment of Babesia & other coinfections

If you have been treated for Lyme Disease but you’re still in pain, you may have MCIDS, or Multiple Chronic Infectious Disease Syndrome. Dr Richard Horowitz coined this term for patients presenting with symptoms of multiple chronic infections, many that don’t test positive with the standard tests. Challenges to the immune system include chronic inflammation, problems detoxifying heavy metals, sleep disorders which in turn exacerbate inflammation, and mitochondrial infections.  Patients with multiple co-infections may have a suppressed immune system, and ultimately it is the inflammation that causes the problems.

Dr. Horowitz has treated almost 12,000 patients with Lyme Disease over the past twenty years. He has observed that most of his patients have had multiple infections, viruses and parasites and that for this reason, the standard of care recommended by the IDSA has been less than effective. Patients may have one or more coinfections such as Babesia, Erlichia, Bartonella, additional piroplasms which don’t test well with the standard testing. Some have hormonal disorders, nutritional and enzyme deficiencies, GI problems, autonomic nervous system disfunction and other symptom complexes.

To describe the challenge of treating a patient with MCIDS, Dr Horowitz uses the following analogy. “It’s like the patient has ten nails in their foot, and you pull out only one. They still have pain.”  Doctors need to address all of the factors and overlapping symptoms.

Also, there are evidently different strains of Borrelia and Babesia that may not be detected with the ELISA or the Western Blot tests. Recent evidence suggests that new species of tick borne coinfections may be arising and may occur in regions of the US and worldwide. One tick bite can transmit a cesspool of multiple infections.

Here is an intriguing paper by Dr. Horowitz illustrating the interest in investigating Alternative Medicine to treat Lyme and coinfections that elude conventional Western medicine. Herbs, Hormones & Heavy Metals. (.pdf)

Dr. Richard Horowitz is the President of the International Lyme and Associated Disease Educational Foundation. He serves the Lyme community in multiple ways, primarily as an internist at the Hudson Valley Healing Arts Center, in Hyde Park, New York. In 2007, the Turn the Corner Foundation named him the Humanitarian of the Year for his ongoing work with chronic Lyme disease.

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Reduce Lyme Symptoms by Nurturing Yourself

Along the streets in my neighborhood, colorful leaves lie jumbled in piles, trees are half empty or illuminated by unexpected shafts of sunlight to reveal tones of red, yellow and amber. The wind has a wicked bite, and suddenly the holidays are right around the corner.

Making plans to gather with family can be a source of joy or nervousness, or a raw combination of all sorts of emotions. Stress is a part of everyday life, but add in a spate of bad weather or a run of obligatory social events and it can be a recipe for real exhaustion, especially if you’re struggling with
Lyme symptoms.

Naturally, during the fall & winter we tend to spend more time indoors, where we’re less likely to exercise or be exposed to natural light, and more likely to eat a little more. Most Lyme patients are familiar with symptoms of mild to moderate depression, and heading into the cooler seasons can trigger feelings of sadness or loss.

What are some simple ways to be good to yourself during this time?

One way to be proactive is to pay closer attention to what you eat.
Dr. Andrew Weil’s food pyramid is a helpful visual chart. At the bottom are foods to eat more of. Start with a solid foundation of a variety of vegetables, which are rich in flavonoids and caratenoids that can help keep inflammation in check. Fruits and veggies both contain antioxidant and anti-inflammatory activity. 

When the wind whips around our house and the nights are long, I gravitate to the kitchen for comfort and creativity. Chopping vegetables for a pot of savory soup creates a rhythm and gives me a sense of order, which is something I seem to have developed a stronger need for throughout the process of healing from Lyme. Hot soup always tastes good and fills the house with delicious smells. I always try to buy organic when possible, and I’m blessed with a sister who lives nearby, grows amazing greens and keeps us freshly supplied.

Here is a list of ingredients that went into the pot last night:

1 yellow onion
3 cloves of garlic
2 carrots
6 large leaves of fresh chard
3 potatoes
baked, leftover salmon pieces
3 cups of vegetable broth
Italian herbs to taste
3 drops of cayenne-based hot sauce
salt & pepper

Chop onions & garlic and quick-fry in a generous puddle of olive oil. Meantime, bring the broth to a boil and turn down to a simmer. Drop in chopped veggies, seasonings, hot sauce, and put the fish in last, since it’s already cooked and just needs to heat up.

Serve with a thickly sliced piece of bread, gluten free. Enjoy!
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Lithium as treatment for Lyme-related depression

Tracy writes:

I would like to find research on lithium as a supplement for Lyme disease. I noticed in one of your posts that you took this your first year.

Both my LLMD and naturopath are in support of supplementing with it. It's helped me personally.  I wonder if you have any research to suggest?  I would like to share it with others to consider as an alternative to discuss with their medical professionals, but it seems without the research proof people are questioning it. (Perhaps as an alternative say, to Xanathx and Klonopin which cause detox stress on the body while we need instead to focus on clearing the Lyme bugs and neurotoxins.)

I hope you can provide info or suggestion where to further my research.

Dear Tracy, Thank you for your question.

I remember sitting in my naturopath’s office in agonizing pain, trying to follow his advice through my brain-fog. When he suggested lithium, my naturally cautious nature kicked in. “What is it?” I asked. He said, “it’s a mineral.”

In my miserable state though, lithium sounded to me vaguely sinister, like something out of an old Dracula flick, the mug of steaming potion given to the victims to keep them docile. Even worse, I knew that lithium was somehow associated with psychotic episodes and depression. Did this nice doctor simply think I was just losing it?

I’d told him about the phone that wouldn’t stop ringing, about hearing my dead father saying my name. I had told him that I couldn’t make heads or tails of any paragraph I tried to read, and that recently, I had remained in the same position in the same chair from sun up to sundown, because I could not decide what to do. (I confided that I thought maybe I’d died, and just hadn’t figured that out yet.)  Depressed? I think any formerly healthy person who wakes up to find they can’t walk, talk, or think is entitled to a little depression. But I wasn’t sure whether taking lithium would firmly secure my insanity, or help me get through it.

With considerable relief, I can report that it helped me through the toughest time in my life. It is also inexpensive as I recall, and I didn’t find it at all addicting. I’m glad it’s also helped you.

Your point is well-taken that without the supporting research, there is reason to doubt claims. Fortunately for those who want more information about the use of lithium, there is plenty of science behind it. In my opinion it is not without risks and benefits, like other drugs, and should only be prescribed by a doctor. In future posts please watch for an interview with my naturopath, whom I have asked to share what he knows and point to further research. Here, for starters:

From an article in the Harvard Review of Psychiatry, 2002:

The special usefulness of lithium lies in long-term prevention of recurrences of mania and bipolar depression and in reducing risk of suicidal behavior. Lithium also may be beneficial in recurrent unipolar depression and is an effective adjunct for treatment-resistant depression.

Reference:
Harvard Review of Psychiatry, 2002, Vol. 10, No. 2 : Pages 59-75

Is Lithium Still Worth Using? An Update of Selected Recent Research
Ross J. Baldessarini, Leonardo Tondo, John Hennen and ,Adele C. Viguera
(doi: 10.1080/hrp.10.2.59.75)

And here are three articles from the British Journal of Psychiatry:

Lithium in Bipolar Mood Disorder

Monitoring Patients on Lithium

Use of antipsychotic drugs and lithium in mania


Learn more about Lyme disease treatments.
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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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Start where you are. Fight chronic inflammation.

Lyme disease is a thief. Chronic lyme disease symptoms can go on affecting a person’s life for many years. Given the complexity of receiving a correct diagnosis, a person with an undetected, underlying Lyme infection may instead be labeled with RA, fibromyalgia, Chronic Fatigue Syndrome, MS, ALS, or almost anything from a truckload of other conditions.

Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.

But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.

Exactly how the stealthy
Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and  veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.

Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in
diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.

What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.


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Healing from Lyme - Part 3

For several years, although I had worked my way to the point where I was well enough to work and follow a somewhat normal routine, I still doubted that I’d ever live a life of my own choosing again, where I wouldn’t wake up feeling like I had lead in my veins and my head wasn’t stuffed with cotton candy. Eating nutritious foods and exercising regularly are two important keys for maintaining my healthy state.

If you want to know how not to lie to yourself about your diet, try keeping a journal where you chart everything you eat. In one column write down the food you ate, and make a column next to it where you note how it made you feel. This is a very basic way to figure out exactly what you’re eating, not what you tell yourself you’re eating. Some doctors tell me that they have their patients keep a similar type of journal when they’re trying to identify food allergies.

My diet is made up of mainly vegetables, some tuna and wild Alaskan salmon, raw and stir-fried or steamed veggies & curry, some fruit, legumes, and breads or tortillas. Some of the bread I buy is gluten free and I like the pasta made from brown rice, but I am not particularly bothered by digestive issues, and regular bread works for me too. In general, if it’s wholesome food with not too many ingredients that I can’t pronounce or recognize, it works.

My current favorite food is a wrap. I love wraps because instead of bread, you’re using a thin tortilla, and you can pack them with all sorts of veggies and greens. Stir-fry is good for that too. A lot of vegetables taste excellent in a wrap or a stir-fry that aren’t that delectable when eaten raw or steamed. I don’t generally drink alcohol or eat sugar, although I will indulge occasionally in a beer or cookies, but not often. Alcohol and sugar pull the wool over my eyes. Literally. When I drink or pig out on sugary things I get Lymie. It’s awful to experience Lyme brain again. It’s so wonderful and amazing to have a clear head again, why go there?

I know you’ve heard this a million times, but remember to drink enough water! Liquids are needed to assist the lymph system. I drink water or tea all day long. Green, not black. Black makes me jittery. Coffee only as a treat very infrequently. Tea is alkaline, coffee is acidic and drinking it tends to make me feel chilly. Tea doesn’t do that.

Lately I’ve been drinking a lot of tea made from bamboo leaves. The bamboo leaf tea has about 350 mgs of silica per cup, it tastes great and also helps me sleep. This isn’t technically a real tea. It’s a tisane, or an infusion. Bamboo has the highest amount of silica, a basic mineral that our bodies slough off constantly in the form of dead skin cells, hair, and nail trimmings. Silica is the main ingredient in collagen, which is so essential to rebuild as collagen is destroyed by the Lyme bacteria.

Especially as we get older we need to be mindful of getting enough silica to maintain the levels we need for healthy hair, skin, nails and bones. Studies are showing that silica is the body’s delivery system for calcium. So if you have enough silica in your diet, the calcium can be delivered to the organs properly. As an interesting side note, studies are also showing that this tea can pull out the aluminum in the body and brain. Researchers are intrigued by this finding, and it may be quite useful in cases of Alzheimer’s.

Smoothies are a treat and a regular part of my diet. Delicious, fresh smoothies made of rice milk, berries, a banana and green food powder are very satisfying. Sometimes I put in protein powder if I’ve been working out particularly hard.

I’ve made other life style changes. The main one is that now I exercise religiously. I used to just dance and walk for exercise, but I wasn’t doing either with any sort of regularity. If it happened, it happened. Then about two years into my healing, my shoulder started to freeze up. I was so frustrated, because I was working really hard to clear up the nasty neurological, skin and heart problems I was having, and had begun to track some very good progress. Then one day I realized that I couldn’t move my shoulder and it was painful. It was disheartening. My partner suggested that I try some exercises, in particular push-ups. Hated those push-ups at first, but I was determined to fix this without drugs, and I did. It took about two years, but now my shoulder gives me very little trouble and I have full range of movement. That was the beginning of my now-regular exercise phase. I love working out now, but at first it was difficult. I hadn’t realized how out of shape I had gotten from being sick, and from my work life style, which is sitting at a computer all day (can you relate?).

I used an exercise CD at home for about a year before I had the nerve to join the Y and exercise in front of others. Then I decided to join a private gym that had something called a kinesis wall. Essentially, the kinesis wall is an apparatus with several stations that enable the user to get a rigorous, core-strengthening workout. Very much like Pilates. I took a weekly class with a very skilled coach, which got me started off on the right foot. I recommend classes instead of private coaching if you want to save some money. They’re fun, and also you meet other people, great for team spirit and camaraderie.

I’m fortunate in that I work at home. For the past 7 years I’ve been in charge of my own work schedule. That has been extremely helpful. If I’m honestly too tired to work I can take a nap. I can also stay close to the bathroom, which helps when you drink so much water.

My heart goes out to everyone who is suffering with Lyme and has to maintain a job where they have to leave the house every day. This can be a bear of an illness, and that life style can be merciless. If that is your situation, see if you can look into telecommuting, even part of the week. Staggering your work hours so you aren’t dealing with bad traffic patterns, a real stress-inducer, can help a little bit too.

So that’s where I’m at currently. Please tell me if any of this resonates, or helps to hear, or if you have an idea that you think could benefit others healing from Lyme. Do you keep a food journal, or an exercise journal? I’d love to hear about your journey and your results.


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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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Healing from Lyme - Part 1

Q.  I noticed in the article you said that your symptoms are gone and your health vastly improved. What did you do to get to that point and how long did it take you?

A. My healing journey is still ongoing, and since Lyme changed my perspective on pretty much everything, I’m always vigilant about the consequences of my everyday choices. I’ve learned how critical it is, when dealing with any serious disease, to approach healing from as many directions as possible. This is called an ‘integral’ approach and there are four general life areas that come under consideration. I’ll get into all four areas in this multi-part post.

First, I’ll give you the general picture of the medicines and supplements I took and still take. To begin with, my doctor put me on a treatment protocol of antibiotics including Omnicef and Zithromax. He also started me on a regime of homeopathics and vitamin supplements to support my immune system. Here is a partial list of the supplements that I took everyday for the first year:

probiotics
cod liver oil
bromelain
thymucin
lithium
dermaliq
CoQ10
quercetin/bromelain
copper
garlic
vit E
vit C
MSM
pekana
L lysine
Noni
liquid chlorophyll
zinc
psyllium

After six months, my doctor recommended that I stop the oral antibiotics and begin IV treatment with the antibiotic Rocephin. I had been through a rough time physically and emotionally, and though I felt better, I didn’t feel anywhere near 100%. In addition, I didn’t have health insurance, and I understood the cost of the IV and the new antibiotics would be around $20,000. Financially, my illness had already set me back in two fundamental ways. First, I hadn’t been able to work full time. And second, I had spent a great deal of money on the medicine and supplements needed already. It was a pretty disturbing place to be. My doctor was a naturopath, and typically did not treat illness with antibiotics. I knew my condition must be very serious if he thought I needed the Rocephin.

I had to decide what to do. After agonizing over it for a week or so, I chose not to go with the IV, but decided to start the Cowden protocol. There was no lapse of time between ending my oral antibiotic protocol and beginning the Cowden, an alternative protocol that I had researched, consisting of Samento, Burbur, Banderol and a number of other herbal tinctures that originate in the Amazon. These native plants have been used to treat malaria for a thousand years or more. I felt like I could make it work.

The Cowden routine worked very effectively for me, and although it took a long time (several years) I’m happy with the results. The cost, while not cheap, was a fraction of what the Rocephin IV treatment would have been. Currently I’m on a break from the r Cowden's updated Lyme protocol">Cowden protocol. About a year ago I tapered off of it, and began taking a low dose (3 drops 3 times daily) of teasel root tincture which I still take. I made this decision after reading about it and interviewing a couple of herbalist/physicians who had found it to be immensely helpful for their patients.

It took me six years to get to the point where I feel normal again. It wasn’t a quick trip. More like an excruciatingly slow journey. Normal, to me, means that I can enjoy my family and friends and take time for them. I can pursue my personal and professional goals and work long days if I so choose without crashing, I can sleep through the night every night, and I can exercise rigorously every day. I can make plans for the future.

In my opinion, exercise and diet are more important than anybody will tell you. I consider Lance Armstrong and all the athletes I’ve had the honor of interviewing for our Lyme success stories to be my solid gold role models.

Next, I’ll give a bit of backstory and talk about what happened before I found my naturopath. What can happen when the doctors don’t know about Lyme disease and prescribe the wrong medicine?


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Gluten free cooking can taste good

Gluten is the protein in grains that makes bread chewy, the glue that makes it rise and holds it together. Increasingly, people dealing with Lyme disease symptoms are adopting a gluten free diet. Some LLMDs recommend it, based on the rise of increased gluten sensitivity seen in Lyme patients.

If you’re in an acute stage, it might be worth a try to eliminate gluten products for awhile. Avoid baked goods made from wheat, spelt, kamut, barley, triticale (a hybrid of barley and wheat) and rye. Especially if your stomach aches after you eat these foods.

However, bread is the staff of life. Changing your bread-eating habits can be an emotional, not simply a nutritional, issue. My partner makes the best french toast this side of the Mississippi. Since we struggled through our Lyme journey, he only makes it as a rare treat, and any resistance is futile. I sweeten it with fresh blueberries or strawberries instead of maple syrup (okay, maybe a dribble of maple syrup). I wouldn’t use sugar or syrup (sorry folks) if you’re experiencing symptoms. But I’ve discovered that if I only eat french toast as a treat, I can get away with it. These days, six years past my acute stage, I’ve returned to an old habit of relying on pasta for a yummy dish that cooks up quick after a long workday. I’m a vegetable fanatic, so my pasta sauce is crowded with fresh organic veggies whenever possible. Even though my symptoms are gone and my health is vastly improved, I’m still very careful when it comes to choosing what to put on my plate. Adopting a largely gluten free diet seems to work well for my whole family. Just takes a bit of adjusting, which is easy these days.

A few years ago, it wasn’t easy to find quick alternatives to gluteny products. Nowadays a lot of name brands offer GF products in the grocery store. Boxed mixes may tempt you because they’re fast and easy, but boxed food tends to contain too much salt, sugar, or other ingredients you may be sensitive to. If you possibly can, buy bulk from your grocery store. Try some of the alternative grains that you used to pass by in favor of the more familiar ones. I know I used to pass them by, simply because I was in a groove (more like a rut) and a little bit lazy when it came to trying new foods.

Recently I’ve been experimenting with more organic whole grains such as millet, amaranth, buckwheat and quinoa in our dinners. Couscous is traditionally made from semolina wheat, so it’s not gluten free. However, there is a brown rice couscous on the market which is indeed GF.  

One of my favorites so far is quinoa, which cooks up extraordinarily quickly. I also love cooking in a wok, which takes very little time and transforms the air with the smell of hot, fresh veggies and warm spices. Pairing quinoa with stir-fried vegetables is fast and satisfying. It’s amazing, but lifelong habits actually can be transformed, and we can change our old emotional associations with that piece of buttered rye toast or whole wheat sandwich. It just takes a little doing. But the effort it takes to live a pain free, post-Lyme life where we are finally liberated from symptoms is worth its weight in gold.

Learn more about
Lyme disease diet.

What’s your favorite gluten free diet food? If you eat mostly gluten free, have you seen, or felt an improvement in your health? Please feel free to share recipes! I’d love to hear from you.

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Link between Chronic Lyme and CFIDS

Even well into my so-called ‘normal’ post-Lyme life, there are days, such as this, when regular routine tasks -- preparing and cleaning up after a meal, writing an email, grocery shopping, seem unbearably exhausting. Friends I confide in say they have the same feelings and that it comes and goes. We attribute this to a variety of causes, hormones, diet, children, our jobs and just plain ol’ getting older. Illness is also suspect, especially for those of us who have battled with fatigue due to Chronic Lyme (aka neurologic post-Lyme), and/or the syndrome we call Chronic fatigue.

More studies are needed to examine the relationship between these two potentially devastating diseases. A dear friend and neighbor of mine, an aging Southern writer appeared astonishingly frail and weak, but whose wicked sense of humor never rested, died last year after struggling for many years with CFIDS. In spite of her failing health it always seemed that her role in our friendship was to make me laugh. She succeeded. Mine was to give her news about the steps being taken to find a cure to what ailed us. If I could get her updated address, I’d email this article to her this morning:

Possible links between Chronic Lyme and Chronic Fatigue Syndrome, are under scrutiny of experts including Steven E Schutzer, MD, and Brian Fallon, MD, the Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.  

Scientists have discovered proteins in spinal fluid that can distinguish people with two mysterious illnesses that mimic each other — chronic fatigue syndrome and a kind of chronic Lyme disease.

Wednesday's study is small and needs verification. But specialists called it a promising start at clearing some of the confusion surrounding two illnesses with similar symptoms and no good means of diagnosis.

"It's a very important first step," said Dr. Suzanne Vernon of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.

Lyme disease usually is cured with antibiotics, but some patients report pain, fatigue and memory or other neurologic problems that linger for months or years after treatment ends. This post-treatment Lyme disease shares symptoms that characterize chronic fatigue syndrome.

The new study analyzed spinal fluid from 25 of those chronic Lyme patients, 43 people diagnosed with chronic fatigue syndrome and 11 healthy people. Using a special high-powered technology, researchers detected more than 2,500 proteins in each group.

Read the abstract of the study here.

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Genomes of 13 strains Lyme bugs mapped

Lyme can sure be a complicated puzzle. For example, knowing that Lyme is an inflammatory disease is one thing. But knowing what to do about that is quite another.  My personal approach often feels scattershot: add turmeric to my supplemental arsenal. Take daily doses of quercetin. Drink water, exercise, avoid sugar.  But doctors are far from being in agreement about therapies, and health websites and magazines are stuffed with pop advice. Some is helpful, some is contradictory or otherwise confusing.

But what can medical science tell us about dealing with chronic inflammation? There is actually good news in this area from a recent study.

Researchers have mapped the genomes of the 13 strains of bacterium that play the most prominent role in causing Lyme disease. This project may help us understand why a significant number of Lyme patients suffer with a chronic inflammatory response. The study may yield some answers to the problem of inflammation, an auto-immune response. More importantly, it may give us clues about what to do about it.
Apparently the discovery is exciting Lyme researchers because they have found that proteins on the surface of the Borrelia bacterium can signal the immune system by attaching to receptors on the surface of white blood cells. The white blood cells are the ones responsible for fighting off infection.
That tiny attachment triggers production of an external protein that traps and stops other white blood cells from controlling the production of antibodies. When this occurs, antibodies are churned out in large numbers, often non-specifically, which results in inflammation throughout the body.
Researchers conclude that through therapeutic intervention they may be able to detach that external protein, and thereby suppress the inflammatory response.
Here is the abstract of the article, online in the Journal of Bacteriology:

Borrelia burgdorferi
is a causative agent of Lyme disease in North America and Eurasia. The first complete genome sequence of B. burgdorferi strain 31, available for more than a decade, has assisted research on the pathogenesis of Lyme disease. Because a single genome sequence is not sufficient to understand the relationship between genotypic and geographic variation and disease phenotype, we determined the whole genome sequences of 13 additional B. burgdorferi isolates that span the range of natural variation. These sequences should allow improved understanding of pathogenesis and provide a foundation for novel detection, diagnosis, and prevention strategies.

Consider the spirochete: a minute, ancient creature. And yet it can cause so much distress. Something so tiny and simple can wreck such collosol havoc. Now perhaps the discovery of this microscopic external protein, only recently become visible to scientists, can help bring about healing.
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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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I'm Dreaming of a Healthy Christmas...

Just like the ones I used to know.

Holidays are a mixed bag, aren't they? On one hand, they offer a break from routine workday (or sick-day) stress. On the other, they can cause even more stress. First, there's the family get-togethers, which wouldn't be so bad except it means putting up with Uncle Fred or cousin Irma, who want to engage you in an intense conversation about your Lyme disease symptoms (which you're trying unsuccessfully to put out of your mind for one evening), or they are insisting that you immediately make an appointment to see this really amazing doctor they found because (although they have done no research themselves) they don't believe your doctor is treating you correctly.

Or, and this is the more likely scenario, your friends and family are thrilled to see you looking pretty good, walking upright, tracking conversation with ease, so they totally ignore the fact that you are indeed sick. They proceed to put the whole year (or three, or five, etc.) out of their minds completely. Like a bad marriage, your illness gets pushed into the past so everybody in the room can feel more comfortable. Your mother or your dearest friend then proceeds to pour you a glass of wine, pass the See's chocolate, and swoon over little Chloe's sugar cookies which are decorated with more candy than you've seen all year.

You may be able to politely resist the alcohol and pass on the cookie tray, but with a sigh you glance over the traditional holiday foods piled high on the plate your dear ones have placed in front of you. And it smells so good. If you've been making a sincere effort to heal, you have been good for months. No sugar, no wine, no Girl Scout cookies for goodness sake. Why not indulge a little, you tell yourself. However, as anybody with Lyme can tell you, one night of sweet indulgence on sugar or alcohol can zap your strength for many days, bring on a dismal case of brain fog and trigger chronic symptoms such as skin rashes, headaches, and more.

As strict as I am with myself, even I find it difficult to resist holiday temptations. A colleague wanted to meet downtown at a local brewery the other day. I had my last beer on Halloween and it brought about a skin rash on my fingers and hands, my weakest spot and most pernicious symptom. I am not drinking beer anymore. And wine, which is said to be good for you, is still alcohol, it's still sugar, and although it's a lovely thing to share a toast with your dear ones over the holidays it can be done with mineral water. Discipline? Yes, you need it in spades. Determination too. But tell me, what more motivating factor do you need than your own recent experience with Lyme symptoms?

My life is no less joyful or rich because I am not sipping wine, ordering a slice of heavenly Tiramisu, or dipping into the candy bowl after dinner. In fact it's just the opposite. The quality and beauty of my life intensifies the more I tend to my health. This Christmas I'll lift my glass and toast to my loved ones' health. Perhaps it's a cliche that if you have your health you have everything, but it's true.

Happy holidays, everybody. May you have fulfilling work, understanding relatives, true friends, and a clear mind and healthy heart so you may enjoy them all. "Wisdom is to the soul what health is to the body."
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New Lyme test for neuro symptoms

Like you, I've devoted a lot of my time and energy to figuring out how on earth to get better. "Be well" is my mantra, and I'm sure I'm not alone here. So when someone points me in the direction of research that's being done in the name of Lyme testing, I'm all ears. Here is something you might be interested in hearing more about as well: a new test for Lyme disease.

As we know, many people sick with a Lyme infection are routinely dismissed by medical doctors who aren't trained in diagnosing or treating Lyme as "crazy," or at best, "exaggerating." This type of reductive response from medical professionals can really sting. Nothing like being kicked while you're down, and from the very people you have turned to for help. I know how it hurts, and I've experienced firsthand the fearsome mental disorientation that this disease can cause.

I remember hearing my (deceased) father clearly saying my name. I jerked my head in the direction of his voice, fully expecting to see him standing next to me.  I remember hearing the phone ringing, ringing, ringing, and each time I picked up, a little girl on the other end pleading to talk with someone whose name I did not know, someone who she swore lived there. I recall sitting in a chair all day for one entire day, afraid to move, practically afraid to breathe, for fear that movement would make the utter despair I felt inside even worse. It felt like standing, during an earthquake, on the brink of insanity, where even one small tremor would send me tumbling into the chasm below.

But I wasn't crazy. I had Lyme. I had an infection that was affecting my brain, and that's all. And I have gotten better. I continue to heal, and of course that is also my deepest desire for you. So what about this new test?

Evidently, there are neurological manifestations that have non-neurological root causes.  It is important that doctors understand this when dealing with patients who present with neurological difficulties and challenges.  The new Lyme test is capable of assessing whether someone has had "an immune response to the Lyme disease bacterium Borrelia burgdorferi and whether the infection is currently active."

The test has been developed by Pharmasan Labs, Inc. in collaboration with NeuroScience, Inc.

From their website:

NeuroScience, Inc., by virtue of its name, has its foundations built on understanding the nervous system. Our understanding of the nervous system has led us to a point where, from a biochemical point of view, we must further consider the role hormones, cytokines, and neurotransmitters play, not as the messengers of individual systems, but rather as parts of a much larger picture. Our goal is to embrace a more global perspective on health that incorporates facets of neurology, immunology, and endocrinology. This newly emerging field has been defined as “neuroimmunology” and it forces us to rethink our approach to health and disease. Our adoption of the principles of neuroimmunology have resulted in an expanded menu of laboratory services that now include a wide spectrum of neurological, endocrinological, and immunological markers.

There are a lot of big words in that paragraph. Don't let them put you off. I think this test, this lab, may be onto something very important here. I'm looking forward to talking with their scientists very soon. Stay tuned for an interview, and meantime read up about their new Lyme test (and how you might use it), on their website.

Be well.
Think positively.
We can get better.



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Managing chronic Lyme symptoms

If you have chronic Lyme, or post-Lyme symptoms, like I do, it's up to you to raise your awareness and change your behavior if you need to. You can't depend on your doctor to tell you to start an exercise program, give up sugar, stop drinking pop, and never touch a glass a wine. You have to make those decisions yourself. Okay, some doctors may counsel you to exercise, but speaking generally, they won't bother. It's not their job. It is their job to find the pathology and fix it, not to counsel you in preventing chronic illness.

Most chronic disease (perhaps including chronic Lyme) is a result of long-term behaviors, including diet, exercise, and other lifestyle factors. This should come as no surprise. Habits may be hard to break, but if getting healthy is our goal, we do ourselves a disservice when we don't recognize the problems caused by our own repeated behavior. Complementary and Alternative medical practitioners, such as nutritionists, acupuncturists and nurse practitioners are generally aware of this. Many perhaps most, Western doctors are not.

My own experience has taught me this. Eating sugary food or drinking alcohol is one example. I've been living with so-called chronic Lyme for 6 years now. When I make the choice to eat those cookies, knock back that beer, stress out from overworking, or skip the gym for days on end, my body reacts. I can ignore the obvious cause and effect. I can attribute the flare-ups and Lyme-brain to the capricious Borrelia infection, or I can take responsibility for giving the infection an advantage. I can choose to recognize my own culpability, and next time the cookies are passed around or my friend wants to pour me a glass of wine, I can simply say no thanks. What may have begun with a Borrelia infection from a tick bite can be exacerbated by habitual behaviors that continue unchecked for years or even many decades. Nothing about chronic Lyme is simple. There is even controversy over calling it 'chronic Lyme.' But one thing seems clear. Medicine alone cannot cure a person suffering with long-term Lyme symptoms. We need to approach healing from multiple levels.

Success stories are published here for many reasons. We need the inspiration, the 'atta girl/boy' pat on the back, for one thing. For another, we want a recipe. 'How did that person do it? What protocol did she or he follow? If they can do it, maybe there is hope for me.'

Managing chronic Lyme disease is dicey, no question about it. But there are many ways to prevent the problems we know are lurking, by making intelligent choices and stopping behavior known to increase the problems. One way to begin raising your awareness around habits that may be hurting you is to see what the Lyme experts say about it. If you think for one minute that drinking alcohol is okay when you have a Lyme infection, just check out what Dr. Burrascano has to say about it.

Dr. Burrascano's bullet list for chronic Lyme:

CHRONIC LYME- Treatment Issues
• In chronic Lyme Disease, active infection may persist despite prior antibiotic therapy
• Relapses do occur and retreatment is often needed
• Repeated or prolonged antibiotic therapy usually is necessary
• High doses of antibiotics are needed, and blood levels should be confirmed wherever possible
• Antibiotic combinations usually are necessary
• Check for co-infections and immune status, and treat appropriately
• May need to rotate through different regimens based on response
• If the CD-57 count is not normal at the end of treatment, then continued illness or a relapse is likely
• May not cure the infection, and may need repeated or open-ended maintenance therapy
• Signs of persistence of infection:
– continued fevers, synovitis
– four week cycles, migrating symptoms
– PCR positivity and low CD-57 counts
• As symptoms wind down, I DO NOT cut the dose, for resistance may develop
• Aggressive supportive therapy is required- and search for any other possible cause of a weakened host:
– Toxin exposure, heavy metal poisoning, malnutrition, endocrine dysfunction, other illnesses, severe or ongoing stress
• Progressively increase exercise program as the symptoms of Lyme decrease
– Exercise is vital and required, or a full recovery will not occur
– Not exercising will increase risk of a relapse

* This post was modified by the editor on 11.24.10.

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Wanted: YOU to live a healthy post-Lyme life

"You know you don't have chronic Lyme disease anymore when you're ready to plan a trip."

I honestly can't remember (Lyme-brain) who said it to me, but that casual remark has been rolling around in my head a lot lately. I'm not exactly planning a trip, but my professional workload has increased exponentially this fall, and I am multi-tasking like a brand-new BlackBerry.  I feel I actually COULD plan a trip, and that is almost just as good, if you know what I'm saying.

Chronic Lyme disease has been a way of life for five years, however, I got a wake-up call yesterday when I caught myself saying out loud, "I could never have multi-tasked like this when I had Lyme."

When I had Lyme.
When I HAD Lyme
.

Such a lovely phrase! I could sing.

Let me back up for a second though and tell you: I have no medical proof of this statement. In fact, in all the years I've been looking into the problem of Lyme disease treatment and diagnoses, what I have discovered is evidence to suggest that a healthy post-Lyme survivor will probably continue to play host to the Lyme bacterial complex throughout their life. 

So the question is, why do some people, regardless of their duration or methods of Lyme disease treatment, develop into healthy post-Lyme survivors -- and why do some people develop symptoms of chronic Lyme disease? It's a maddening situation.

I talk to many people involved in the medical and healing professions. When I first began conducting these interviews five years ago, I observed that many doctors had differing opinions about every aspect of Lyme, particularly when it came to Lyme disease treatment.  I assumed that I would soon begin to hear the same approach being used by the doctors I interviewed. But instead, over the years I have noticed that all the experts have their own perspectives, their own opinions, their own approaches to healing Lyme. And Lyme isn't simple. Nothing about it seems to be simple, though much about it has certainly been oversimplified.

The answer to that question, of why do some suffer from chronic Lyme symptoms, while others seem to drift back into a post-Lyme level of relatively good health, is a mystery to me. I will keep asking the questions, and knock on wood in the meantime.

I receive a lot of letters from readers of this blog, and you are all in my heart every single day. My wish is for all of you to experience that unique and buzzing wonder that is a healthy mind and body: ready, willing, and able, to work, love, and live a normal life again. To surprise yourself one day soon by hearing these words come out of your own mouth: When I HAD Lyme...

And maybe you'll plan a trip too!




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Jessica Wojenski, teen on a mission to educate people about Lyme

As reported in the Hollis Brookline Journal, teenager Jessica Wojenski, who recently graduated from New Hampshire's Bedford High School, has struggled to recover from Lyme symptoms severe enough to keep her out of school much of her junior and senior years.

“There’s such a lack of awareness out there about this that unless you scare people into realizing, they’re never going to get it, even though I hate doing that,” Jessica told the reporter.

I know just how she feels, and you probably do as well, if you have suffered with debilitating Lyme symptoms. Jessica is dedicated to raising awareness of the complications the disease can cause. Evidently she did not show symptoms in the early stages, which is a problem that many of us deal with -- not even suspecting Lyme disease as a cause of our painful and disorienting symptoms until the disease has progressed beyond the early stages. Kudos to her, and we hope she continues to find support in her New Hampshire community, which is located in the hot zone for ticks and Lyme infections.

When you are first diagnosed, you can easily be overwhelmed by information about what to do. What will work, what won't? Who should you consult and who can you trust as a reliable resource?

I agree with Jessica, there is not enough awareness of the serious nature of Lyme disease out there. Like her, I contracted Lyme about 5 or 6 years ago, and my painful symptoms and treatment quickly made it impossible for me to live my life in a normal way. Since then, my mission has also been to help educate people about this disease through sharing my interviews with Lyme disease experts and people who are living normal, healthy lives again, post-Lyme.

My life is now back to normal, thankfully, and my hope is that yours will soon be too. This is a good place to start educating yourself and clear up any confusion. Our list of "10 things you need to know about Lyme," is available immediately, when you sign up for our free newsletter.



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Biotoxins test and chronic Lyme

Biotoxins created by the Lyme bacterial complex and released into the body can cause chronic illness, even when antibiotics are killing the spirochetes. You will recognize these illnesses by their other names: Chronic Fatigue Syndrome, Fibromyalgia, Sick Building Syndrome, irritable bowel syndrome, and depression.

People who cannot naturally eliminate biotoxins develop chronic illness. About 20% of patients with Lyme disease, due to their hepa-type, are susceptible to biotoxin illnesses. However, according to Dr Richie Shoemaker and other biotoxin experts, the toxins can be eliminated and good health can be restored.

From biotoxin.info: "Many physicians feel that diagnostic tests for Lyme are unreliable, due to differences between strains of the bacteria, and the potential for co-infections with Bartonella, Babesia and/or Ehrlichia. A team of researchers at Boston University Medical Center (Cartwright, Martin Donta) discovered and patented (US Patent No. 6,667,038) the Bbtox1 neurotoxin. They reported that the effects of Bbtox1 were consistent with that of botulinium and other cytoskeletal toxins. Even so, there are no chemical tests for the disease-causing toxin B. burgdorferi produces and releases into human body, even as antibiotics are killing the bacteria. Without such tests, the medical debate over whether or not Lyme can be quickly cured has surged in recent years, provoking frequent battles in which physicians have attacked each other's credibility and integrity (and in a few cases, even their medical licenses). All too often, suffering patients have been left in the middle, essentially ignored by doctors who contend that their long-term symptoms aren't the result of Chronic Lyme, but of 'Fibromyalgia,' 'Chronic Fatigue Syndrome', 'depression,' or 'irritable bowel syndrome.'"

Testing for nervous system dysfunction can be done online. The Visual Contrast Sensitivity (VCS) test is a pattern recognition test that Dr Shoemaker uses to help determine how the nervous system is functioning. According to Dr Joseph Burrascano, at least 70 - 90% of patients whose VCS test is abnormal feel better with treatment, while 30% of patients who test normal from the VCS test feel better with neurotoxin treatment.

When testing for Lyme infection, coinfections are often culprits that go undetected. Be sure to look for Bartonella or Babesia, which destroys red blood cells.

Dr Shoemaker and other Lyme experts agree that if you find elevated C4-A markers, and if symptoms are persistent beyond the initial antibiotic protocol that may indicate that a longer antibiotic treatment, possibly including intravenous antibiotic therapy, is needed. As he makes it clear in this video, you and your doctor will be the judge in whether or not you should use long-term antibiotics.




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What's stressing you?

Stress is believed by many to be a huge contributor of illness. Struggling with Lyme disease symptoms is stressful not only on your physical and mental bodies, but also on your emotions. And to top it off, even your own awareness of the stresses in your life can be a source of anxiety.

I remember when I was told that my Lyme-induced skin rash was nothing but a bad case of eczema. The nurse practitioner I'd gone to for help asked me in-depth questions about my rash, my diet, and my health history. She seemed puzzled that I was not the type who might suffer from eczema. I had never overused antibiotics, my Mediterranean-type diet included fresh greens and did not include sugar or alcohol. I was very much in love with my life-partner and running a small business that satisfied my financial needs, and which gave me time to spend with family and friends.

As I stood to leave, she peered pensively over her glasses at me and tapped her pen against her chin for a second. "You really must do something about whatever is stressing you out so badly," she said.

When I returned a blank look, she threw me a doctorly look and added, "think about it."

On the drive home, I soul-searched, but still couldn't locate a source of stress along the magnitude she was referring to. It wasn't as if I was living in a bubble, I had certainly had my challenges and bumps on the road of life. But at the time, things were going well. As a naturally self-reflective person, I felt a little embarrassed. Out of touch with myself. Was I making myself sick? By the time I pulled into my driveway, I had concluded that there must be something really wrong with me -- mentally and emotionally, not physically.

Months later, when a different doctor had my blood tested at IGeneX and I received a positive diagnosis for the Lyme infection, I felt that odd sense of relief familiar to many people with this disease. The illness, the mysterious symptoms, the long journey to a positive diagnosis, and the diagnosis itself is so hard-fought and hard-won. And finally, the physical and mental stress of treatment itself. It was a little like that old joke about the tombstone engraved with "I TOLD you I was sick!"

If you think stress might be a contributing factor to your illness (or like me, even if you don't), here are 7 things to do to eliminate or reduce tension and anxiety every day.

1. Set strong boundaries.

2. Take time for yourself.

3. Find areas of your life to maintain control.

4. Learn when to say "no, thanks."

5. Surround yourself with supportive and proactive people.

6. Ask for help when you need it.

7. Love yourself.

How do you deal best with the everyday stresses in your life, as you heal from Lyme? Please let me know in the comments. I'd love to hear from you!



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Wake up call: Lyme symptoms return

About six weeks ago I got a nasty wake-up call. My Lyme symptoms began to return. To cut to the chase, I am getting things under control again slowly, but it's been a trial. 
 
Has that ever happened to you? 
 
"It's a rotten deal" to quote my dear old auntie, but it's more than that. I'm trying to keep the perspective that most of all it's a powerful reminder about the importance of staying firmly rooted in my healthy routine. 
 
I forget that I share my body and mind with a bunch of Lyme bugs. When I've got the situation under control, I kill them off slowly and without too much herxing, they don't act out, and I feel good. I can think and talk and walk and work and live and love, just like I was designed to do. The problems start when I forget (as I did six months ago) about the delicate balance I've got going on. Last year I was feeling so incredibly good, so Lyme-free, that I slowly let little things slip. I re-introduced some sugar into my diet. I let myself indulge in a beer now and again -- figuring it's got protein, B vitamins, minerals, magnesium, selenium, iron and it's a stress-buster in reasonable quantities. After all, I rationalized, it was surely not a recipe for disaster, right? 
 
But then, following a few months of slippage, the perfect storm hit. 
 
Literally. Our region was hit by snow-pocalypse in mid-December, leaving us without power for several days. It was cold. I was cold the whole time. We were snowed-in for over three days. My partner was dealing with a health concern of his own, which stressed us both out as we could not get out to get what we needed. In addition, I'd been sick with a flu prior to the storm, so my exercise routine was interrupted. I'd stopped taking a few of my mainstay supplements, and other stuff...you get the picture. When the snow melted and the power came back on I began to make up for lost time (or so I thought) by exercising twice as much, even introducing African dance classes into the mix, which, if you've ever done, is quite the workout! 
 
Anyway, the symptoms have had a hay-day with me, the bugs have been partying, and I'm finally, but ever-so-slowly returning from the brink of a really painful six-week herx. My worst since I was first diagnosed in 2005. 
 
The point is, we each have to determine what the right healing path is for us. For me, the two biggies are keeping up with my supplements and herbal therapies and not slacking on a sane amount of exercise. Also, it's about staying warm, as my body temp runs low, which is typical of people with a Lyme infection. Through trial and error I've also figured out which other things contribute to my personal homeostasis. 
 
And I'm freshly vigilant for the Lyme bugs, who have somehow not quite managed yet to eat my common sense (completely). I'm not going to slip again. 
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3 keys to better sleep

When was the last time you got a really good night of deep sleep? Sleep is a soothing tonic for anyone suffering with Lyme symptoms, yet peaceful snoozing can be elusive when you're in pain.

3 keys to better sleep:

1 - Therapeutic massage. Gentle, healing touch can help you relax and get a better night's sleep. Massage is helpful in lowering the anxiety which naturally arises when you have Lyme symptoms. Just the simple act of being touched with compassionate intention can be healing in and of itself. Before you make an appointment with a professional massage therapist, talk over your situation with them. Be certain you can communicate your needs clearly. She or he should be made aware of your illness and your threshold for pressure.

The Bowen Technique, developed by Dr JoAnne Whitaker, is similar in principle to acupuncture. It is a type of gentle massage designed to unblock energy and help the body maintain equilibrium so that healing can take place. Many people struggling with Fibromyalgia and CFS/ME report that this technique has accelerated their healing. (Incidentally, Dr Whitaker is one of the experts I interviewed for the LDRD Interviews with Experts series.)

2 - Maintain a regular schedule. Go to bed and rise at the same time every night and day. Even on the weekends. This is a good health-habit to cultivate even for people who aren't sick. Former surgeon Dr Christine Horner, author of Waking the Warrior Goddess: Harnessing the Power of Nature & Natural Medicines to Achieve Extraordinary Health, which received the “Best Book of the Year” for 2005 award from the Independent Book Publishers association in the category of health, medicine and nutrition, strongly believes in the body's innate ability to heal from any disease. Dr Horner recommends going to bed no later than 10 pm and rising at 6 am each day. (Note: LDRD members, please read the transcript of my interview with her, or listen to the audio version.)

Keeping a regular sleeping schedule helps your body to regulate its other autonomic functions, eating and making bowel movements. All of this can lead to more effective healing therapy. In addition, I'm a big fan of afternoon snoozing, and I usually get in about 20 minutes to one hour, daily. I'm convinced that my napping habit saved me during the worst of my illness. However, if you struggle with insomnia, you might get better results at night by limiting your naptime during the day.

3 - Allow yourself time to wind down before bedtime. This is a personal challenge for me. I'm either online with work or friends, or deep in conversation with my favorite person in the world, my partner Evan. I'm also a natural night owl, so if you are too, I'm sure you can relate. It can be tough to find the discipline to slow down at night, especially if you aren't in the thick of the disease and your mind is back to working order.

Cultivating a meditation practice, simply using breathing techniques from your yoga class, or relaxing in bed with an inspiring book can do wonders. Don't exercise for up to three hours before bedtime. Avoid stimulating drinks--especially during the afternoon and evening. No alcohol. Take a warm bath, and listen to soothing music. Let your loved ones know that they can help by gently rubbing your shoulders or neck. Stretching your arms and legs slowly and methodically before you get into bed can signal your body that it's time to drop off into dreamland.
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Relief for painful joints

One of the most common Lyme disease symptoms is achey knees, fingers, and other painful joints. If you suffer from rheumatoid arthritis, you may find relief with moxibustion, which you can create with the heat from a lighted, tightly wrapped bunch of dried mugwort. Moxa is mugwort.

Author, Herbalist and acupuncturist Lesley Tierra, whose arthritis massage oil formula I've posted here, says many arthritis sufferers find relief from moxibustion. To use it on your knees or fingers, light one end of the moxa stick by holding it over a candle, or with a lighter. The flame will go out but the stick will still be burning, like hot coal. Hold the cool end and aim the hot end of the moxa over the achey place, close enough to feel the heat. Be careful not to touch the moxa to your skin. I've been using it on my aching knees for about ten minutes at a time, once a day. Sitting quietly for a few minutes and appreciating the soothing warmth flooding my joints has also helped remind me to slow down during a busy work week.

Moxibustion is used in Traditional Chinese Medicine to warm a patient's skin and stimulate qi, the life force. You can obtain a moxibustion bundle from an acupuncturist, which is where I got mine. It's about the same size as a cigar, and while I think it smells a whole lot nicer than most cigars, it does create a fair amount of smoke and incense while burning.

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Psychology Today on neuroborreliosis

Lyme disease can affect every system in the body, including the brain. So what happens when a doctor you respect tells you that your unbearable pain is all in your head? Read this hair-raising account of one family's journey to hell and back, in the latest issue of Psychology Today. In their story, you're bound to recognize parts of your own.

Read the article in Psychology Today.

Become a member and listen to the experts directly.
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Parasites and Lyme symptoms

Lyme disease symptoms are not only caused by the Borrelia bacteria. Co-infections from other bacteria transmitted through ticks, such as mycoplasma and parasites are also responsible. Antibiotics kill bacteria, but not parasites.

Dr. Eva Sapi, director of Lyme research at the University of New Haven, Connecticut, went online to search for information about a particular parasite with the official name of microfilaria nematode. There she found a European website with pictures of the microfilaria, and discussion about a protocol for treating Lyme with salt and vitamin C. Prior to stumbling across the website, she did not know about that particular protocol.

Although she is pleased and surprised to discover that patients have gotten help from the protocol, she expressed some concern that we in the US are behind in Lyme research. Apparently the salt and C protocol is treating a parasite connected with Lyme disease that researchers in the US haven't even begun to isolate.

"I talked to Lyme patients and some of them, like you, are very familiar with the protocol," Dr. Sapi told me, "and said that it even helped them tremendously."

We invite you to become an LDRD member so that you can listen to the full interview with Dr. Sapi, as well as other Lyme specialists.
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Two approaches to Lyme symptoms

Ginger Savely, RN, FNP, who treats people with Lyme disease symptoms and other tick-borne diseases, says, "I always tell my patients that the approach is from two angles. One is to decrease bacterial load, by giving antibiotics to kill the bacteria. The other is to strengthen the immune system."

Detoxing and boosting the immune system must go hand in hand in the successful alleviation of Lyme disease symptoms. "Because if the immune system isn't functioning very well," says Savely, "you can give a person all the antibiotics in the world, they're not going to be able to fight the infection."

Savely says her approach is realistic, considering the complicated nature of the Lyme bacteria, which has the capacity to hide and evade the body's immune system for an unknown amount of time. The twofold approach can take time and effort, yet she says the hard work eventually pays off. "Hopefully, the bacteria levels decrease to a point, where the newly strengthened immune system can take over and keep the infection at bay," she says.

Become a member and listen to our exclusive audio interview with Ginger Savely and other Lyme specialists.
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Lyme disease symptoms in families

RN and Lyme expert Ginger Savely says similar Lyme disease symptoms frequently show up in members of the same family. In her experience treating patients with Tick Borne diseases at health care clinics in Texas and San Francisco, CA, some families seem to be more keenly susceptible to falling ill from a tick bite. Genetic disposition may play an important part.

The Borrelia bacteria does not affect all people to the same degree. Lyme disease symptoms vary from person to person, but family members may present similar symptoms. And some may not get sick at all, exhibiting a stronger genetic resistance to succumbing to the infection.

"It is always impressive to me how many people do have this infection that are totally fine. Many times, I will check family members that are still healthy, and they actually test very positive for the disease, although they have no symptoms," says Ginger. The bulls eye rash is not always present.

Ginger, a member of ILADS, follows their guidelines when treating Lyme patients. That means sticking with antibiotic therapy for as long as it takes. For certain patients, such as those who have suffered with Lyme disease symptoms for decades, treatment has taken up to four or five years. Neither Ginger nor her patients mind that treatment must be prolonged. As she says, "it does pay to just keep plugging along, and keep treating. Because eventually people do get better."

Read about the Expert Interview Audio Series and listen to the interview with Ginger Savely.
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Lyme is weird, spirochetes are crafty!

Lyme is weird. Spirochetes are crafty. Lyme disease symptoms can look different in everyone, because infection can occur in any system of the body. Some people never see a tick, yet they develop symptoms, go to the doctor and get antibiotics. Others can't persuade their doctors to even test for Lyme -- even if they caught the nasty little tick in the act, and display the classic symptom of a bull's eye rash. A significant number of people don't read their own symptoms right (like I said, Lyme is weird. Who can blame them for not suspecting it?) Therefore, they may not discover they've got Lyme (if they're 'lucky' enough to test positively for it) until the disease has reached the late stage. By then, according to some Lyme literate docs, the bug is very tough to catch, and v-e-r-y resistant to being killed.

What if, even after you test positively, and your doc is ready to treat you, you're turned down by your insurance company? And anyway, let's not pretend that only people with health insurance get Lyme disease. What do you do when you're sick and you're not insured? It's no secret that antibiotics are prohibitively expensive. Some herbal treatments that appear to be quite effective are less so, but if you aren't able to afford to see a Lyme literate doc in the first place, where does that leave you?

That leaves you right where untold numbers of struggling sick people find themselves: On your own. Left to your own devices. And here's the rub: Lyme brain! Anybody with this disease understands what a cruel joke the universe seems to have played. At the very moment you need your mind the most, your critical thinking faculties are all fogged up. What's a Lymie to do? Find smart people who've been down this path and ask a bazillion questions. Here's a shameless plug for our 'Interviews with Experts' series. Tune in and listen up. We've all got a lot to learn.
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Persistent Lyme disease symptoms to be studied

Some people think Lyme disease symptoms are "all in your head." Others experience persistent challenges, including severe fatigue, cognitive disorganization and arthritis, and argue that in spite of their having completed antibiotic therapy the Lyme bug is still making them sick. Regardless of your position on whether or not chronic Lyme exists, the question remains: Why do Lyme disease symptoms persist, in some patients, beyond the recommended course of antibiotics prescribed by the CDC?

A recent study conducted at the UC Davis Center for Comparative Medicine offers assurance that scientists are attempting to answer that question. According to a news release distributed by UC Davis News Service on March 31, researchers found residual amounts of the Borrelia burgdorferi bacteria lingering in the DNA of laboratory mice, after the infected mice had completed antibiotic therapy. Apparently the research suggests that although residual bacteria can be detected, there is no evidence that it is causing inflammation or disease. However, the study shows that it may, in part, account for persistent symptoms. According to lead researcher Professor Stephen Barthold, "this may explain why some Lyme disease patients recover slowly following antibiotic treatment, exhibiting what has been termed 'post-Lyme disease syndrome'."

Fortunately, we can look forward to further investigation into the cause of chronic Lyme symptoms, and perhaps even one day discovering therapies to stop Lyme's devastating effects. "The results of this study do set the stage for controlled laboratory research investigating potential therapies for persistent Lyme disease infections," researchers at the Center for Comparative Medicine say.

Read more about Lyme disease symptoms.
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lyme disease and fatigue

Do you get enough sleep? Or are you like so many people, getting by on just a few hours of shut-eye and rushing to begin your daily activities directly after the alarm goes off. In a sleep-deprived culture, surrounded by colleagues and friends who are running on coffee and bagels, it can be hard to tell when your level of fatigue is simply status quo, or if it's crossed the line to become a genuine symptom of Lyme. The garden-variety droop that comes with a busy life and a few nights of deprivation is generally a temporary problem. You can catch up and revitalize your adrenal glands with a couple of deep-sleep nights and a daytime nap or two.

On the other hand, bone-crushing fatigue, the kind that is symptomatic of Lyme, is hard to ignore. Your activities are limited because you just don't have the energy. You go to work, come home, fall asleep on the couch while waiting for dinner to cook itself. You go to bed early and try to sleep in till the last minute, but you don't wake up refreshed. You can't catch up. In fact, even after a good night's rest it can feel as if you hadn't slept a wink. You can't wash your face or tie your shoes without sitting down. In many cases, you may not even be able to hang on to your job, unless you're lucky enough to work from home.

Since that sort of fatigue is associated with a number of illnesses, including chronic fatigue syndrome or CFIDs, fibromyalgia, mononucleosis, and Lyme disease, medical testing is imperative to help you and your doctor ascertain why you are so tired. The tricky nature of the Lyme bug can make it difficult to eliminate Lyme as a possibility, even if you test negative. Your best bet is to find a doctor who is experienced in detecting Lyme disease symptoms, so that your overwhelming fatigue doesn't get ignored and written off as simple exhaustion.
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Dealing with Herxes



Herxing occurs when your body reacts to bacterial die-off, usually as a result of taking antibiotics. The herx itself isn't considered dangerous to your health, but it can be extremely unpleasant. Your body is cleansing itself of toxins, a crucial step. The problem is that this cleansing process stirs up symptoms and makes you feel sick. Doesn't seem fair, does it? Frequent or intense herxes can stress you out, and when you're healing from LD you need more stress like you need another hole in your head. However, herxing can help Lyme patients understand what's happening to them, and some folks say that observing their herxes helps them monitor the effectiveness of their therapy.

The naturopath I consulted while in the critical stage of Lyme agreed. He suggested that I use my herxes as a guide or measurement of sorts. When I was on antibiotics, a period of about six months, it was difficult for me to distinguish between a herx and the Lyme disease symptoms themselves. I came to the conclusion, at that time, that it didn't matter which was which. They were both equally devastating, and all I could do was deal with them the best way I knew how. I wasn't at liberty to lower my dosage of abx, because according to my doctor the Lyme bacteria were likely to replicate and get stronger if I did.

Some Lyme patients say they don't herx on certain protocols, such as Steven Buhner's herbal protocol, for example. Conventional antibiotic therapy does seem to cause intense herxing, which some would say is a good sign because it indicates that you're killing the bug. I found that there were several different ways to deal with a dismal, stressful herx that accompanies chronic Lyme.

Here are just a few:

* Number one: Drink more clean water all day long, even if you think you're already drinking a lot of water. That will go a long way toward flushing out the toxins.

* Number two: Have a bowel movement every single day. Get that stuff out of there!

* Another is to drink the juice of a lemon, straight. You can also blend a whole lemon with one or two tablespoons of olive oil, put the mixture into a glass of water or juice, and drink it down.

* Dry brushing is another favorite of mine for ridding your body of toxins. However, you can't use this method if your skin is rashy, because you may make it worse. If you don't have a rash, brush your dry skin gently toward your heart each morning before you shower. This method really helps your lymph system kick into gear, and toxins that have accumulated during the night wash away down the drain.

* Take a spoonful of vegetable oil, such as olive oil, first thing in the morning. This method is as yucky as it sounds, but it works for me. Hold the oil in your mouth and swish it around, but do not swallow it. After a minute, spit it out and rinse your mouth.

* Exercise, if you possibly can. (This also helps with #2 - the bowel movement.) Sitting around is one of the worst things we can do. We have to move the body, and assist the lymph system in its critical job of carrying nutrition to the cells, and carrying the garbage away. Jump on a rebounder for five minutes in the morning, and five at night, if that's all you can manage. It will really help.

* Watch a hilarious movie, or a stand-up comic you like. When you're laughing, your body's immune system kicks into high gear. You'll also find that your whole attitude improves, and you'll sleep better at night.

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Herxing and finding the balance

How do you tell the difference between a herx and Lyme symptoms? A herx, aka Herxheimer reaction, is many things to many people. When you're suffering, it doesn't seem to matter whether the cause is a herx or symptoms that are acting up. You just want them to stop. When you are infected with the Lyme bacteria, your body is loaded with toxins that react within your body's multiple systems and make you sick.

You have to kill the bugs and get them out of your body. Detoxifying, therefore, is a primary aim in healing from Lyme, but unfortunately, detoxing can also make you sick. When you're healing from Lyme you must try to find the balance between killing the bugs and keeping the herxes under control, so it doesn't feel like they are trying to kill you. Finding that balance is like surfing a giant wave. You must be hypervigilant, sensitive to your environment, and able to react as elegantly as possible to the perpetual changes that encompass you and carry you along. Although, as anybody who has ever suffered the stress and pain of Lyme symptoms or herxes would say, I'd rather be surfing.

It seems that herxing (often accompanied by a rash) can be triggered by a number of different factors. Stress, change of medication type and an increase in medication dosage (either herbal or pharmaceutical medications) are a few examples. Those in the Lyme community (albeit, an unwilling yet blessedly generous group of humans) deal with herxes in a wide variety of ways. That's the subject of my next post.

Until then, hang ten.
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Lyme lowers body temperature


Lyme disease lowers body temperature.

Staying warm in the winter can be more challenging when you're fighting Lyme disease. You may even notice your symptoms increasing after you get a chill. When you wake up to a frosty morning, reach for a steaming hot cup of herbal or green tea to help shake off the fatigue. Add a slice of warming ginger. Lyme bacteria thrive in cool body temperatures, and many people suffering with LD actually have lowered body temps. That's why it's so important to get regular exercise and choose your beverages and foods wisely.

One of the nicest things (okay, sometimes the ONLY nice thing) about snowy weather is the occasional Snow Day. When I lived with roommates, and the snow happened to be piling up on a weekday night, we'd get up early and begin our Snow Day vigil at the kitchen table, where we could keep an eye out the front window. We'd make a big pot of coffee and tune into the local radio station to listen for the list of school closures, since we were all teachers at three different schools. I always wondered why I'd start to get chilled after my second cup.

One of the problems with coffee is that it cools your body, instead of heating it, like some spices and herbs will. For a real burst of warmth, add just a touch of cayenne. If you need sweetener, try agave nectar or a drop of stevia, not sugar, which is a no-no when you've got Lyme. Staying warm and healing is your goal through the chilly winter months.
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Lyme Disease and depression

Depression. It isn't all in your head. Some of the symptoms related to the brain and nervous systems that have been observed in Lyme patients are headache, tremor, facial paralysis (Bell's palsy), tremor, burning or sharp stabbing sensations, numbness, irritability, dementia, and mood swings. Depressing, huh? Yet not all Lyme sufferers experience all these symptoms. Clearly, they are not only related to Lyme; they may also be indicative of another condition. Especially during the holidays, it can be tough to manage the stress brought on by financial pressures, travel, and a busy social calendar.

If you're healing from Lyme, you must slow down and nurture yourself first. Stick your regular routine as much as possible, and cut down on work if you can swing it. Cook nutritious meals, get plenty of sleep if you can, and cultivate a practice of relaxation through gentle Tai Chi, yoga, meditation, or deep breathing. If you're a mom, or accustomed to being the caretaker, it can be difficult to ask for help, but you need to get over that. Recruit help from your family and friends. This is a good time to learn how to ask for assistance when carrying in the grocery bags, making beds, or tidying up for your relatives' visit.

Brain and nervous system involvement is usually a sign of late stage, or what is referred to as chronic Lyme. Get professional medical help if you suspect you may have Lyme, even if you have not tested positive for it. Most of the tests for Lyme disease are notoriously unreliable at this point. If you are unusually depressed, or your mood swings are worsening, and you also have some of the other symptoms associated with the disease, such as crushing fatigue, fever, rash, or arthritis, it is very important to consult a Lyme-literate doctor with experience in recognizing Lyme symptoms.

In the meantime, nurture your spirit as well as your body. Spend time with folks you really love. Rent funny DVDs, look for the humor in your everyday situation. It's there, even in our suffering. Take inspiration from other people who have survived serious diseases and recovered to live happy lives. Above all, during the holidays and beyond, don't let depression get you down! Bear in mind these wise words: This too shall pass.
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Lyme symptom-free

I am finally back to living a normal, Lyme-free life. There were days that I never, EVER thought I'd get here, but it's happening. I'm upright, I'm productive, and I'm getting on with it. I'm relatively symptom-free. Sometimes, like this morning when the birds are singing and I can smell the yummy omelets that my sweetie is cooking in the kitchen, I feel absolutely great. (Or maybe that's the Holy Basil) However, there are no magic bullets. There has never been a day when I woke up and thought, "Hey! I'm all better." Getting over Lyme is not like getting over the flu. It takes time. A lot of time. It's been two and a half years since my diagnosis, and more than three since I began to deal with mysterious symptoms.

A tiny muscle in my left eyelid is twitching, but I'm going to chalk that up to staring at this computer screen.

I took the herbal tinctures from the Amazon for about a year. Dr. Cowden's protocol worked really well for me. Currently, I'm taking a very high quality colloidal silver and a host of other helpful supplements. In October of 2006, I had a month-long herx that manifested as itchy rashes on my shins and ankles. That was always where the worst of the rashes had been, for the two years prior. I kept taking the herbs, but I was nervous that the rash might worsen, so I wasn't increasing the doses like I wanted to. I struggled with the decision to increase the doses and take my chances with more herxes, or just step back and take small amounts until I got over it and felt like I could risk a herx. I didn't increase the doses for about two months, then in about February I started increasing, and I didn't break out or feel Lymie. So I slowly started to increase more and built up to the full dose, then stayed on it until about September.

Since October of 2006 I have had no major breakouts, no problematic rashes, and every day I feel incrementally better. Symptoms, good riddance.
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Diagnosing Lyme Symptoms

Due to its many symptoms and its ability to mimic numerous other illnesses, Lyme disease remains tricky to diagnose. The bull's eye rash, with which the infection is frequently associated, is by no means the only symptom to be aware of. Indeed, only a relatively small percentage of people infected with the bacteria known to cause Lyme ever present with the bull's eye rash. Other symptoms include fatigue, fever, headache, joint pain, a rushing or jumpy heart, and an extreme sensitivity to bright lights, especially florescent lighting. Symptoms do not all appear in all Lyme patients, and they may present at different stages as the disease progresses.

Lyme is a multistage illness, and the first-stage symptoms mentioned above can all be mistaken as signs of another ailment. Joint pain can pass as arthritis, headache may be associated with other triggers such as workplace stress, eye strain, or menstruation. Fatigue is a universal problem, as many people suffer from lack of sleep, and when overcome by tiredness, tend to push themselves beyond a healthy limit with the assistance of caffeine. Because brain fog is primarily caused by a lack of sleep, there are many people who walk around each day trying to function normally while feeling mentally fuzzy. Thus it becomes confusing to discriminate in order to obtain a diagnosis. When is mental confusion, or the inability to make clear decisions, caused by a fatigue, and when is it part of a bacterial infection?

In advanced stages of Lyme, or in cases where the bacteria has affected the brain, called neuroborelliosis, inability to concentrate, memory loss, brain fog, speech problems such as stammering, and hallucinations are all potential symptoms, all of which, again, do not appear in every Lyme sufferer. Hallucinations can be expressed through any of the senses. They do not always manifest as visions. Some people hear voices or sounds which aren't there. Others feel sensations, such as a raging fever, when in actuality their body temperature is normal. Additionally, disorientation or a sudden onset of paranoia can be a symptom of this stage of Lyme disease.

There is no question that speech disorders, severe mental fog, and these other symptoms are upsetting and frightening. Yet once a clear diagnosis has been obtained, a Lyme patient can begin to heal using a multi-branched approach, including whatever is deemed needed by the patient and his or her team of medical support personnel. Painful and often torturous Lyme symptoms can be alleviated with effort and commitment to healing. Many Lyme sufferers eventually find themselves balanced and virtually healed from Lyme, often as a result of using a wide array of healing approaches, including pharmacological antibiotics, herbal and nutritional supplements, physical exercise, and mental and emotional support. Through heroic effort and a will to commit to their own healing, many people who have experienced even the severe and disorienting symptoms of neuroborelliosis have recovered from Lyme disease.
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Autumn leaves and Lyme disease anxiety

A picture arrived in my inbox this morning, my friends' adorable one-and-a-half-year old son playing in a giant pile of freshly fallen leaves. His chubby cheeks are rosy and he's smiling like an imp. But the picture made me itchy and uncomfortable. Immediately, I thought of Erythema migrans, or "bull's eye rash," which is a common symptom of bacterial infection in the early stages of Lyme disease. The rash is caused by the bacteria called Borrelia burgdorferi, the causative agent of Lyme disease. The Bull's eye rash appears as a red, slightly itchy skin rash with a clear, or whitish central area. However, Erythema migrans is not always a symptom present in patients with Lyme disease.

Lyme disease symptoms don't always show up in the form of a rash, although many people believe the bullseye rash is the most common type of symptom. Other symptoms include fever, fatigue, headache, and arthritic pain in the joints. Many people pass off the fatigue and headache as common exhaustion from an overly-busy schedule. The disease is stealthy, not always directly signaling that something's wrong.

Ticks naturally thrive during the warm summer months, but due to warmer weather in the fall and winter, it is still crucial to check for ticks, many of which carry the Lyme disease bug, AKA Borrelia burgdorferi bacterium. In many cases, the evidence suggests that if a tick is found on the body, its removal within 24 hours can prevent it from downloading its toxins into the skin. After a long struggle with Lyme disease and its crushing symptoms, my enjoyment of some of life's simple pleasures has been tainted, such as a picture of a cute little nature imp in a pile of leaves.
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Lyme disease symptoms: Is herxing necessary?

Lyme disease symptoms are also referred to as Herxheimer reactions or herxing. Would you herx if you discovered you didn't need to? This is a question that Jean Reist, R.N., asks her patients to take to heart. Jean, who has treated hundreds of Lyme sufferers through her PA clinic, Journey to Wellness, has discovered that when Lyme patients tend to proper lymph system drainage they don't experience the stress of a herx. Jean discusses her findings in an audio interview as part of the Interviews with Experts series on the LDRD.

Herxheimer reactions, the healing crisis experienced by Lyme sufferers as a result of a die-off of Lyme bacteria, are a major source of stress for Lyme patients. Simply put, the more effective the medicine in killing the spirochetes, the greater the herx. Killing Lyme bacteria is a curious business. Agonizing pain and the recurrence of symptoms is often used as a measure for the dosage. In general the rule is: If you're herxing to a great degree, back off on the medicine. If you're not herxing at all, you may not be taking a high enough dosage. Each patient will react differently to treatment, and with a wide variety of alternative treatments available, it may take some time and experimentation before you find the right dosage.

Proper lymph drainage can facilitate the healing of Lyme disease and help reduce or even eliminate Lyme disease symptoms altogether. At the first sign of a herx, Reist advises, drink copious amounts of water, exercise, and reach for a detoxifying tonic herb such as Burbur or Parsley. Each organ in the body has a lymph "neck," which is where blockage can occur. Therefore, it's very helpful for the patient to work with a health care practitioner who can help you locate the blockage. The next step is to work on unblocking, which can be achieved in a number of ways, Reist says.

You can hear the entire interview as a member, join now and listen.
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Getting Enough Sleep? Effects of Sleep on Lyme.

According to sleep researchers, a lot of us aren't getting enough hours in dreamland. If you have Lyme disease you're likely to have weird sleep patterns. Some nights you're out the minute your head hits the pillow – or even before that! Other nights you toss and fidget while the cats and dogs and everyone else in the whole neighborhood snoozes peacefully. We need to get adequate sleep if we expect to heal from this disease. While our bodies sleep, important cellular work gets done. Healing happens. The myriads of smart biological micro-elves that make up our amazingly intelligent bodies tend to the repair work that they cannot do while we're awake. Our bodies need at least 5 hours and usually no more than 8 hours of good solid sleep to make us better.

The time you go to bed is important too. Our bodies follow inner patterns known as circadian rhythms. I've noticed when I stay up past the witching hour – midnight – and sleep until after 9 a.m., I don't feel as rested as when I go to bed by 11 p.m. and wake up around 7. Dr. Christine Horner, who teaches how to use Ayurvedic practices to heal from cancer and other serious diseases, feels that we should go to bed by 10 p.m. and rise after 6 a.m. to maximize the potent healing force of sleep.

If you're a night-owl like me, 10 o'clock sounds really early. But for the sake of healing more quickly, let's make a promise, shall we? Whenever we can, we'll go to bed earlier than usual, lounge like housecats, and read a good book for a little while, then doze off. The world can turn without us. Our elves have work to do. Let's help them do it.
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