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Chronic Lyme

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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Video games and art as therapy


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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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Have Lyme? Have patience.

Treating for post-Lyme or chronic Lyme infection may be highly controversial in the medical industry, but down here in real life it seems quite clear-cut: You have Lyme. You go to a doctor who treats your Lyme infection. You get better. After a time, you stop taking the antibiotics. You go back to work, to caring for your kids, to everyday life. You may or may not change your diet, your lifestyle, your stress levels. And then sometimes, not always, but sometimes years after the fact, the Lyme infection returns. Is further treatment necessary? Sometimes yes, sometimes no. Sometimes the flare-ups continue and increase in intensity, driving you back to the doctor. Chronic or not, the label is not the essential thing. Treating the flare-up, or the return of the symptoms, is.

My mother raised five rambunctious kids. She tells me she often prayed for guidance. Her favorite prayer was: God, grant me patience, and give it to me RIGHT NOW! Patience is certainly a virtue in healing chronic or post-Lyme disease. But cognitively knowing it and embodying patience in everyday life are two different things.

Here in the mountains of NC, we've just received our first snow. Although I welcome the changing seasons, I find myself getting a tad anxious about the coming winter. It's hard to be patient when you have no control. And of course, who has control over the weather? Last winter was no picnic for people with Lyme. The cold weather poses many more challenges to people who struggle to keep their body temperature at an even keel. Plus, skin conditions that are common with Lyme and co-infections are exacerbated by winter weather, little sun exposure, and snug clothing.

Seeking personal inspiration and practical advice about treating Lyme, I looked back through our posts and conversations with healthy post-Lyme survivors. How do these people remain strong? Are they just made of different stuff? Do they worry, like I do, about tiny signs of Lyme's return, a sore that won't go away, a persistent itchiness. The occasional Lymie surge of dizziness that fades almost as quickly as it comes on.

Then I found Darryl Crews' advice about treating Lyme disease, which I want to share with you. I so appreciate his level-headed approach to treatment. Also, not surprised to see 'patience' right there at the top of the list:

1.  PATIENCE, DETERMINATION, WILL POWER, DEDICATION, DISCIPLINE: Your chances of recovery are good if you happen to possess these qualities.

2.  MEDICATION: Treat all known infections thoroughly with specific antibiotics. Treat aggressively until infection load is reduced to a point where the immune system can take over. Consider IV if you have neuro symptoms or fail to respond to orals. Learn to embrace herxes and avoid under treating at all costs.

3.  DETOX: Address die-off daily to decrease toxins and reduce herx intensity. Consider using supps/herbs, sauna, Epsom salt baths, coffee enema, colonics, etc.

4.  SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.
 
5.  SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.
 
6.  EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)
 

I especially like #4. My treatment routine includes meditation and deep breathing at night and again in the morning. Sleep is indeed essential, and these little habits help create the space for a good night's sleep.

I've come to accept that my approach to treating Lyme is unique, and if it's working, it's the right thing to do. But those dark clouds outside the window, that nippy breeze lifting leaves off the trees. What Lyme treatment approach can fend off cold weather? I'm still treating with teasel tincture and hoping it will help keep my body warm, as it has been doing for several months now. And come to think of it, it's lunchtime. A nice pot of carrot-ginger soup sounds perfect. Ginger is a warming food.

What is your attitude about winter? How do you stay warm enough and protect your skin? Lyme treatment, especially treating for chronic Lyme disease, is different for for everyone, but there is so much we can learn from each other.
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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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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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Natural-born killers

There's a spot of good news in Lyme research this week. Scientists trying to ferret out the role of NK (natural killer) T cells in white blood cells know that dysfunctional or deficient NK T cells seem to lead to autoimmune diseases, such as diabetes, cancer and rheumatoid arthritis -- the kind that plagues the knees of many chronic Lyme sufferers. It seems that these natural-born killer T cells play a big part in helping to clear out bacterial infection. Read on:

RESEARCHERS FROM LA JOLLA INSTITUTE AND ALBANY MEDICAL COLLEGE IDENTIFY CELL GROUP KEY TO LYME DISEASE ARTHRITIS

Research Shows Important Role of NK T cells in Fighting Lyme Disease


SAN DIEGO – (December 3, 2008) A research team led by the La Jolla Institute for Allergy & Immunology and Albany Medical College has illuminated the important role of natural killer (NK) T cells in Lyme disease, demonstrating that the once little understood white blood cells are central to clearing the bacterial infection and reducing the intensity and duration of arthritis associated with Lyme disease.

Click here for the full press release.
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$25,000 for Lyme research

I'm pleased to pass along a bright spot of news for chronic Lyme disease sufferers. According to an article in today's MarketWatch, researchers at a biotechnology company were gifted by an anonymous donor with $25,000 towards a new study to try to unlock the mystery of Lyme disease. Why do antibiotics only cure some cases of Lyme?

Researchers at Viral Genetics, Inc., are hoping to answer that question and more.

The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.

"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.
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Chronic Lyme Disease

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

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

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

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

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

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

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Scientific evidence ignored

If you are struggling with late stage Lyme disease symptoms, the last thing you need is anyone telling you there is no such thing as chronic Lyme. Yet that is what doctors, many who seem genuinely interested in helping their patients, are doing.

Doctors who defend the IDSA's guidelines for the treatment of Lyme -- thirty days of antibiotic therapy -- as sufficient say there is no scientific evidence to prove that Lyme disease can enter a chronic stage. However, Ginger Savely, RN, FNP, who treats patients with Lyme, says that thousands of animal studies do offer scientific evidence that Lyme bacteria survive beyond the recommended one month course of doxycycline. Yet these studies are overlooked by the IDSA.

"Of course, we can't do the same kinds of experiments on humans as we can on animals. So just because we don't have the human studies out there, the IDSA always wants to ignore all the many, many animal studies that there are, basically just saying, well, those aren't people," says Savely.
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Healing Lyme Disease with Art

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

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

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

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