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Chronic Lyme disease

Diet and inflammation

Indianspices
What is diet’s role in healing Lyme?

The body’s response to injury is often inflammation. This is beneficial in case of a cut or scratch.

But when the body’s immune system is chronically switched-on due to a Lyme bacterial infection, the resulting inflammation can wreck havoc.

What you can do to fight inflammation

Stress and medication contribute to inflammation, but so does a diet of refined carbohydrates and sugary foods, as well as dairy, red meat, and cereals.

Be proactive in your own healing

Eat a mediterranean-style diet free of foods that are known inflammation triggers. Inflammation may not sound serious -- but according to medical experts it is no joke, which is why it is called the silent killer.

Healing from chronic Lyme is not easy for many of us. Why gamble with your health by consuming foods that may cause your body even more harm?

Increase your healing odds by eating anti-inflammatory foods such as oily fishes (salmon, sardines, and mackerel), walnuts, green leafy vegetables, and many spices and herbs.

Bright yellow turmeric with black pepper reduces inflammation hiding in the body, and contains anti-aging properties. It is included in the treatment of many debilitating diseases such as diabetes, Alzheimers and arthritis, as well as Lyme.

Look around in the produce section. Let your senses guide you. Choose organic, healthy, brightly colored fruits and vegetables which are high in anti-oxidants. Our diets should include about two and half cups of vegetables and fruits every day.

Exercise — not just on the days you feel like it.

The mind is not always our friend. Sometimes it is a bully, interfering with the needs of the body by arguing that it’s too tired or too sick to move around even just a little.

I speak from experience!

Don’t let your mind work against your body’s best interests. Make an effort to override it. Form new habits. This takes courage, so don’t be surprised if you think this is a difficult task. It is. But aren’t things that are worthwhile usually kinda hard?

Here’s a motivating factoid to encourage you to exercise even just a little:

Exercise oxygenates the blood and kills spirochetes, which cannot survive in a high-oxygen environment. Be a spirochete slayer. Your mind will even be impressed.

No one in this world is more invested in your healing than yourself. Not your mom, your doctor, your spouse or even your dog. Only YOU can change your habits if needed.

A tasty, organic mainly-veggie diet and regular exercise are part of my healthy healing journey. I exercise every day now, but it took years to formulate working-out as a habit. I realize this means my mind is particularly stubborn. At least now its habit is a healthy one that it won’t let me give up!


Manuka honey and shea butter

Honey is healing, and for centuries societies around the globe have applied it to cure infection caused by wounds and other skin injuries.

Skin problems associated with Lyme disease can include severe rashes and intense itching. Honey can be used topically to help reduce inflammation and soothe itchiness.

Manuka honey is a special, potent healing balm. Bees collect it from the Tea Tree bush, widely praised for its cleansing and germ-killing abilities.

Manuka honey’s healing properties are so dependable and effective that it is used by medical personnel in Emergency Rooms for patients with critical burns and gunshot wounds.

It is sticky, like all honeys. So it should be covered once applied, but mixed with shea butter Manuka can soothe and heal irritated skin.

For help with a case of seasonally recurring eczema, I discovered that spreading on a blend of Manuka honey and shea butter before bedtime helps reduce inflammation and soften rough skin.

If you try it yourself, remember to cover with a non-stick bandage so it stays on your skin instead of ending up on the sheets!

A remedy for inflammation — and a yummy late-night drink

In my house, Manuka is also our favorite go-to for soothing scratchy throats due to colds or allergies. On a chilly night I love curling up with our two little doggies, and a good book, and sipping on a hot steamy mug of Lemon-Manuka.

Into a cup of hot water, stir in one teaspoon honey and a squeeze of lemon. Add a dash of cayenne pepper for a cup of cozy warmth.

Avoid eating sugar if you have active Lyme symptoms. You do not need to add to your body’s troubles by consuming this non-food food.

The point is to reduce inflammation, and sugar can cause insulin levels to rise, which results in plummeting blood glucose and encourages silent or low-grade inflammation. Stevia is a good sugar substitute and doesn’t react in the body like sugar.

Okay, so your turn! What is your favorite anti-inflammatory remedy?
Comments

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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What’s missing in Lyme treatment?


Healing chronic Lyme means you have to think like a private investigator. Yep, even when your brain fog rolls as thick as on a San Francisco street.

Private investigators solve mysteries. You want to solve the mystery of good health. How should you start?

Ask questions.

Let’s say you’re in pain. You go to an MD. What happens?

After a physical exam, you may walk out of there with a prescription for pharmaceutical painkillers.

The drugs may ease the pain for awhile. However, locating the origin of pain can be tricky. And if the source hasn’t been diagnosed or addressed, pills can only hide it temporarily and it may come back. In some cases, pharmaceuticals can even make it worse.

What then?

You might look further afield. Pain is motivating — which may be its only merit, but it’s a goodie.

You might turn to alternative treatments, seeking out an acupuncturist, herbalist, or a traditional Chinese Medicine doctor.

The MD offered one choice: pharmaceuticals. The acupuncturist, herbalist, and TCMD offered three more choices and possibly some pain relief without drugs.


What are the missing keys in Lyme treatment?

Standard treatments for Lyme cover one dimension: Kill the bug with antibiotics. If that worked for everyone all the time, there would be no need for further discussion. But it doesn’t.

Lyme patients who still aren’t healthy and continue to suffer from symptoms after completing a course of antibiotics might want to ask their doctors lots of questions.

For starters, let’s ask what else besides antibiotic treatment might be helpful? Diet and exercise aren’t generally addressed.

Most MDs don’t study nutrition, so they don’t consider it a factor in healing. However you might land in the office of a doctor with nutritional expertise. There are exceptions, because of overwhelming evidence that what you eat does play a role — a big role, in health and healing.

Or you might find a more holistic doctor, with knowledge that movement and physical exercise—even if only one brief walk per day—helps detox your lymphatic system, which is critical to recovery.

In that case, you’ve got a doctor with a wider perspective on Lyme treatment. You are encouraged to become more proactive in your own recovery. And that could be the moment you turn the tide toward wellness.

What other dimensions are missing?
For further reading see the 4 Paths to Beating Lyme
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Chronic Lyme, a persistent problem

Chronic Lyme disease is the controversial third stage of this multi-stage illness. While medical experts agree that for some, problems and symptoms persist after the standard protocol has been administered. What they don’t agree on is whether these persistent problems should be treated with antibiotics, and for how long. Also in question is the use of the term “chronic.”

According to the
CDC, what many call "chronic Lyme disease," is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS). Doctors can follow protocol and treat patients who have been diagnosed with early-stage Lyme.

The fact that there is no insurance code for chronic Lyme, or PTLDS, means that many doctors will not treat chronic Lyme with long-term antibiotics.

Dr Lee Cowden, whose Lyme protocol has helped many, including me, agrees about the debilitating effects of long-term antibiotics. Dr Cowden would rather the patient detox and kill the Borrelia bacteria with herbal tinctures such as Cumanda, Samento, Banderol and others which will not punch holes in the gut lining and create problems in addition to the Lyme infection.

Stephen Buhner’s core herbal protocol for Lyme includes Cat’s Claw, Sarsaparilla, Japanese Knotweed and Eleuthero. Stephen is also devoted to helping Lyme patients and his alternative treatments are soundly researched. Many people opt to self-treat with these or other herbal protocols while also still on the doctor-prescribed antibiotics. Stephen has told me that his core protocol will not interfere with standard antibiotic treatment.

My personal approach to treating chronic Lyme, or “late-stage” Lyme as my doctor called it, did include treatment with long-term antibiotics (six months). After that, I embarked on the
Cowden protocol for a couple of years. During that time, I would never have had the stamina to work full-time outside my home. My work as a freelance writer allowed me to keep hours that fit with my quirky schedule of daily napping, frequent breaks, and staying in bed all day when I simply had zippo energy. Talking to sources over the phone, writing propped up on pillows, and a supportive, compassionate partner smoothed the brutal lows and quickened the recovery time.

However, my long healing journey has been successful for one main reason, and it isn’t just afternoon naps or diet or exercise, or love, or even the expensive
Resveratrol that makes the difference -- but all of those do definitely have their place. The real key is a continual re-commitment to healthy living every day, through several daily practices that address and acknowledge these four fundamental areas: my intentions, behaviors, my culture and shared values, and the social systems that play a major, yet somewhat invisible, role in life.

Chronic Lyme or PTLDS will continue to dampen and depress our spirits if left untreated. And long-term antibiotics may not be the answer.




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Chronic Lyme and Antibiotics

Q. Hello,

I am new to Lyme Disease... come from a very holistic background, eat a whole food
organic diet, etc. Will not bore you with details and get to my point.

Any idea on the current train of thought on IV antibiotic treatment for people with
chronic
lyme
? I will also be taking a holistic approach, but am also trying to get the latest info on
antibiotic treatment before my visit with the infectious disease md.

Thank you!

A. Thanks so much for your question. I get where you're coming from, as I've always
been a health-foodie myself. Lyme blindsided me too. Through diligent attention to
my cross-training approach -- including body, mind, spirit and shadow practices daily
-- I am completely well. And I was almost dead. Sounds dramatic, but it's true.

Your question is specifically about IV treatment for chronic Lyme, and I'll tell you,
it's a complicated answer. For one thing, the term "
chronic Lyme" is not a condition
widely agreed upon in the medical world. Whether or not a chronic state of Lyme
disease exists seems to completely depend on whom you ask. Doctors are people
and people have their biases. I noticed recently that the
CDC has changed their
information on their website to reflect that there is a condition which they say is more
properly called “Post-Lyme disease Syndrome,” or PTLDS. The article states that the
cause of PTLDS is as yet unknown.

My bias is to go with a cross-training approach, which I have laid out on our website.
This is what we call "100 Perspectives," which is the way I think about my practices,
the body, mind, spirit and shadow practices that I mentioned. Please read about it
and see what you think.

The notion of long-term
antibiotics (IV and/or oral) is hotly debated. Although I
know that some are grateful for antibiotics long-term, I am also a huge proponent of
attacking the bacteria from every angle. The daily practices are not simply tacked on
to my life, they’re central to it. This is what has worked for me.

Dr. Lee Cowden, whom I've interviewed several times, is a worldwide expert on Lyme
treatment. He's not pro-antibiotics for the long-term. He sees that they can cause
worse problems than the Lyme bacteria can for the intestines. He is in favor of long-
term herbal tinctures, which do not damage the intestines when used as directed in
his protocol. His protocol worked for me as well. We need to bear in mind that the
intestines play a major role in our immune system, so Dr. Cowden’s message is a
significant note of caution, in my opinion.

I suggest that you listen to the
audio interviews on our website that feature Dr.
Cowden. (Many are free for the public to access - go to our blog and do a search.)
He will teach you so much and give you a lot of food for thought, all very positive.


All my very best to you on your healing journey,
Suzanne

Here's more information about Dr. Cowden and the
Cowden protocol.


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Diet as medicine. Go gluten-free or not?

Lyme Disease and the autoimmune condition which is refer to as Chronic, or Post- Lyme share some iagnosing Lyme Symptoms">symptoms with Celiac Disease (CD), which is at the heart of the current shift in the US towards gluten-free foods. In about one percent of the population worldwide, gluten causes damage to the walls of the small intestine, resulting in gastrointestinal problems, malnutrition, and manifesting in various symptoms, including skin rashes, serious fatigue and weight loss.

Very little is known about CD, however but there is a growing awareness, which is why, over the past five years, we are seeing more gluten-free (GF) choices in the grocery stores. To a person with Lyme disease, this scenario, an autoimmune disease with vast, murky symptoms and not a lot of clarity about
treatment, probably seems vaguely familiar.

The leading US specialist in CD, Peter Green, MD at Columbia University, recommends that people suspected of having gluten-sensitivities not quit eating foods containing gluten until they are properly tested and diagnosed. This is because withdrawing from foods with gluten will change the test results. However, as there is currently no other treatment available for people with CD or non-Celiac gluten sensitivity, the
treatment consists of eliminating all sources of gluten-containing foods from the diet.

But there's a catch-22 in that logic. Do you feel better when you don't eat foods containing gluten? I do, I don't feel as puffy, which I guess is the way inflammation in the gut feels. Would you go back to including gluten in your diet just so your intestinal biopsy proves that you have a definite sensitivity to it? I'm not sure I'd do that. And if you did go back to eating it, and you were diagnosed with CD, then you'd be put on a treatment that consists of not eating gluten.

Evidently, the US is behind the UK and Italy and other countries in its knowledge of CD.  According to a 2011 interview with Dr. Green published on
Delight Gluten Free Magazine online, in England, people with CD are part of a program that enables them to have gluten-free foods delivered to their home. This “food as medicine” is also a tax write-off because it is part of a subscribed treatment for their illness.

I write about nutrition and a healthy, whole foods, Lyme disease diet, and whenever I pay for my fresh organic groceries I often think how nice it would be if I could write off a meaty percentage of that food, since it is a central element of my ongoing treatment.

What do you think? Let's talk about it.

Comments

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.

Comments

More good reasons to go wheat-free

More good reasons to go wheat-free

Not only our physical health, but our mental health originates in our guts. People dealing with
chronic Lyme disease symptoms have good reason to guard both of these states. I’ve been exploring why it’s so important to eat a healthy diet, and that means paying as much attention to what we don’t eat as to what we do. I’ve flirted with a gluten-free diet for months now, but something tells me that it’s time to give it up for good. At least for a month, and see how it goes from there. Want to plunge in and go gluten free for a month with me? Read on and think it over.

First of all, have you ever have a ‘gut feeling’ about something? Most people have. In fact we rely on those feelings to inform us in crucial ways. Our guts can warn us to get out of harm’s way, keep us from getting involved with business deals of a questionable nature, and alert us when a distant loved one needs our help.

When I ignore those feelings, I always wind up thinking I “should have listened to my gut.” You too?

Lately, my gut has been saying to cut out wheat. I’ve cut back on it, but haven’t ever gone without it for long. So I’m going to start tomorrow, as I’ve already blown it this morning with lox and bagels. I feel bloated. This is a disappointment, because I’ve been telling myself that I love lox on an everything bagel with vegan cream cheese, red onion, tomato and capers. However, this morning’s breakfast is still sitting in my gut, calling attention to the fact that it just isn’t getting digested right.

What can we expect to happen when we cut out wheat and gluten from our daily diet? Well, for one thing I expect my mood to lift. It’s fall, and I am in the school business. Every fall I get excited about new schedules, new people, new notebooks, you name it. I love school. But with the newness comes anxiety. And with the anxiety comes a sort of spirit-clenching mental habit of worry. Did this get done? Did that get done? You know what I’m talking about. Some things are under our control, some aren’t. So anxiety is usually generated out of what I cannot control. This stuff makes me moody. So perhaps a gluten-free diet will help me accept the things (and people) that I cannot change.

Another change I can expect from eating no wheat is a loss of puffiness. I have to say, that is something to look forward to. Chronic Lyme symptoms have kept me aware of the importance of taking anti-inflammatory supplements, such as liquid cod liver oil, and turmeric capsules. But still I often feel a little puffy around the waist and in my arms and face. Exercise helps, but the puffiness returns when I eat bread.

The biggest benefit that I can expect is an improvement in my mental clarity. Now that’s really exciting, considering that I deal with college students. When it comes to the information age, you can never quite keep up with the generation below you! They’re intensely savvy with computers and everything that I need to be. So, maybe I’ll be better equipped to keep up. I’m definitely looking forward to that.

If this works as well as I think it may, I might just go another month. Anybody game to try it with me?


Comments

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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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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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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Interview with Functional Movement Specialist Katherine Dowdney

I'm pro exercise! I never had a regular exercise program until I was healing from Lyme, and its perks and positive effects have been countless. It is one of those amazing gifts that's come from dealing with Lyme and chronic problems.

And, I'm so inspired by CJ Jaffe, Perry Fields, and all of the other athletes and exercise enthusiasts we've interviewed here, who have kicked Lyme and continue to integrate a rigorous exercise program into their schedule of healing.

But when we're talking exercise, just how much is enough? How much is too much? Should you start an exercise program without consulting your doctor or medical adviser? After all, getting stronger and getting well are the goals, not wearing ourselves out.

Recently, I had an opportunity to talk about these issues with Katherine Dowdney, a Functional Movement Specialist with a private practice as an exercise and rehabilitation coach. She describes her experience in working with people who suffer with conditions brought about by chronic illness. She talks about the problems and concerns we all face, such as how to choose a good exercise coach and just how far to push ourselves when we're really sick ora feeling out of balance.

Here is her bio and website:

Katherine Dowdney’s passion for anatomy and movement is evident in her teaching. She enjoys empowering clients to meet their personal fitness and wellness goals. Utilizing a combination of the Pilates method, yoga, traditional weight training, and additional corrective exercise modalities Katherine has a special interest in working with individuals with chronic conditions and pre or post rehabilitation. Katherine is a certified ACE personal trainer, a dual certified Pilates instructor through Peak Pilates and Balanced Body, an E-RYT 200 hour yoga instructor, an NASM Corrective Exercise Specialist, and an AFPA Post Rehab Specialist. She has received training in experiential anatomy, pre/post natal Fusion Pilates, Sadhana Chi yoga, Children’s yoga, and Structural Yoga Therapy. She recently attended an 8-day training in Therapeutic Yoga for Seniors at Duke Integrative Medicine. Her interests are in mindful movement, pain management, and corrective exercise.

Katherine is a founding member of Moving Women Dance Performance Ensemble in Asheville, NC where she choreographs and performs as a modern dancer. Along with dancing and teaching movement science, she enjoys spending time with her husband, Sam, and their dog, Ranger.

Her website is www.blissful-body.com

LDRD members, please listen to the conversation with Katherine.
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Vote for CJ! Our Lyme Hero

Need a shot of encouragement?

Some days we all do, and I'm glad to bring you an exciting piece of news about a young athlete and registered nurse whose story is chronicled on our Lyme Success Stories series.

Here is an update on CJ Jaffe, who remains a bubbling fountain of energy despite continued trials with Chronic Lyme symptoms. CJ is a triathlon competitor and one of our favorite success stories (read more about CJ's Lyme success story here).

We in the Lyme community don't have too many opportunities to get psyched about something fun. So, don't miss this chance to put a bit of excitement on your healing path. On November 22, 2009, CJ will be competing in her 2nd Ironman Triathlon with Chronic Lyme. More importantly, she will be raising money for the Turn the Corner Foundation to help fund further research.

Here's the fun part: You are invited to follow CJ online on the day of the race. Simply go to ironmanlive.com and click on "Athlete Tracker." Type in "JAFFE" and her stats will come up. So tune in, watch, cheer on CJ and get engaged.

Vote for CJ!

In addition, CJ has been nominated for the Ford Everyday Ironman Hero award, to be presented in front of a crowd of more than 5,000 people. If she wins, the prestigious award will help her build Lyme awareness. Plus, she would receive an extra $1,000 for her charity, the TTC foundation. Please cast your vote for CJ Jaffe for the Ford Everyday Ironman Hero award by emailing helen@nasports.com The more nominations the better!

"I have been feeling okay, considering being treated for the symptoms I have," says CJ. "But, I'm still focused on athletics and I am convinced that between athletics and keeping a positive outlook, it's saving my life. I think I'm going to continue on this road for a while."

There's more!

Stay tuned to the LDRD blog for further information about CJ's plans to launch CTJ, "Create The Journey," an athletic team -- local and national -- of athletes like her. People who are passionate about giving Lyme patients a reason to survive, while positively impacting society.
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Where are the articles on Lyme disease?

Dr David L Katz, a medical doctor and blogger for Prevention Magazine, wrote this reductive "preview" of Under Our Skin last year. On the Prevention site, I posted my response to his claim that there is no such thing as chronic Lyme. In his article, Dr Katz admits that he hadn't yet the movie, yet he already had strong opinions about it. I went searching for his post this morning, but it has since been removed. There is very little trace of Lyme disease mentioned in his health blog. I am not singling out Dr Katz for criticism here. However, I find it curious that a popular magazine on integrative medicine doesn't seem to be concerned with Lyme disease anymore.


Here is an excerpt of his 4/25/2008 blog post, which he titled "From the (sub)Lyme to the ridiculous":

A Yale colleague and leading authority on Lyme Disease, Dr. Durland Fish, brought to my attention a documentary film, to be shown at the Tribeca Film Festival in New York, highlighting the devastation wrought by chronic Lyme infection.

The only problem with that is...there is no such thing.


The best available science indicates that chronic infection with Lyme does not occur. There certainly can be, and are, chronic symptoms after Lyme infection- but that is very different from chronic infection. Consider, for instance, that after a bout of polio, some people have a permanent disability. That does not mean they are permanently infected with poliomyelitis- we know for a fact they are not.


There is, unfortunately, a cottage industry in treating "chronic Lyme." That treatment often involves lengthy courses of antibiotics, long after evidence of active infection is gone. Some clinicians are probably engaged in this practice in a genuine, if apparently misguided, effort to help. Others- a far more serious transgression- may be exploiting patient desperation for profit.


As far as I can tell, the documentary on chronic Lyme will be in equal parts compelling, and misleading. The terrible plight of the patients profiled will, and should, tug at your heart strings. But the implication that these are cases of chronic Lyme infection is at odds with the scientific evidence.


Here is my response:

Unfortunately, the vast and often seemingly disconnected array of symptoms, which can include rheumatoid arthritis, arrhythmia, memory loss and crushing fatigue, often lead patients from specialist to specialist, who never choose to investigate whether an underlying bacteria, treatable with antibiotics, could be at the root of their patients' problems. These clinicians could as well be "exploiting patient desperation for profit." Countless people have been misdiagnosed and under-diagnosed with Lyme disease, subscribed medicines that replicate the Lyme bacteria, causing the patient further, and even permanent, harm.



Comparison of the Lyme bacteria, Borrelia burgdorferi, with poliomyelitis proves very little. The spirochetal bacteria that causes Lyme disease is able to evade the body's immune system, and it is scientifically well-documented that tests for Lyme infection are often inaccurate.

Perhaps a "cottage industry," as you call it, has developed for a good reason. People are suffering. Many doctors are unwilling to consider Lyme infection as a cause of their pain. Numerous medical researchers and physicians recognize that gaps exist in our current understanding of the Lyme bacteria. More scientific studies and more medical research is necessary.
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Chronic Lyme or not - Get educated



A national coalition of health care workers, policy makers and others, the Partnership to Fight Chronic Disease (PFCD), is attempting to educate Americans about the significance of the crisis in our current overall state of health.

The PFCD mission:

* The PFCD believes that rising rates of chronic health problems pose a significant and unsustainable burden on the U.S. health care system, and that the viability and strength of the system presently and in the future relies on a willingness to enact policies that help Americans better prevent and manage chronic illnesses.



The PFCD and the Centers for Disease Control (CDC) do not categorize Lyme as a chronic disease. Therefore, it seems unlikely that this organization will help Lyme patients who continue to suffer with Lyme symptoms even though they've already been treated according to the CDC guidelines--a 30-day course of antibiotics.

However, if you suffer with chronic Lyme you may be interested in these six "unhealthy truths" about chronic disease in the United States, which I copied from the PFCD website:

* Truth #1: Chronic diseases are the No. 1 cause of death and disability in the U.S.

* Truth #2: Treating patients with chronic diseases accounts for 75 percent of the nation's health care spending.

* Truth #3: Two-thirds of the increase in health care spending is due to increased prevalence of treated chronic disease.

* Truth #4: The doubling of obesity between 1987 and today accounts for 20 to 30 percent of the rise in health care spending.

* Truth #5: The vast majority of cases of chronic disease could be better prevented or managed.

* Truth #6: Many Americans are unaware of the extent to which chronic diseases could be better prevented or managed.



If you consider yourself ill with chronic Lyme disease, one "healthy truth" to embrace is to get better educated about how to manage your illness. I realize that it's the toughest job you can take on, especially while you're sick. Believe me, I know because I've been there. Although the status of "chronic" or "Post-Lyme Syndrome" may not be easily or quickly determined by the policy makers, your health is what counts here.

Get educated about ways to manage your health, such as eating foods that will nurture (organic greens and proteins), not harm you (refined sugar).

LDRD members, login to listen to Lyme experts.
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Chronic Lyme disease is just a name

When I was very sick with chronic Lyme, the scariest thing was not the agonizing pain in my skin and muscles, not that my shin skin had deteriorated into raw meat, and not even that I had trouble walking and could barely talk without stammering.

The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.

The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."

Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.

She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.

I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.

As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.

Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.

People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.

I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.
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MSNBC prints story of Lyme suicide

MSNBC has posted a heartrending story by NBC news producer John Baiata about the suicide of his beloved sister Sue, who could no longer bear the pain she suffered from chronic Lyme Disease. Our thanks goes out to the Baiata family and to MSNBC for sharing this painful story. I urge our readers to drop them an email thanking and supporting them for helping us bring this issue to the greater public.

I know I'm not the only one of us who was moved (to tears) also by the overwhelming number of intense responses to the story. Among them was a statement by Pat Smith, reminding readers that children are at the greatest risk for Lyme, and that a valuable bill in support of Lyme disease research is still mired in political muck. Here is a partial quote of her comment:

"Another Congressman, Christopher Smith (NJ), who introduced the bill, HR 1179, said last year on the floor of the House, regarding Lyme disease, there is a "cover-up.” We echo that 1000 times over. MSNBC, I hope you will put all the power and resources you possess behind exposing that cover-up soon, as children ages 5-9 and 10-14 are at the greatest risk of acquiring Lyme disease, and the prevailing attitude is allowing government agencies to remove children from mothers who are having them treated with ANTIBIOTICS for Lyme disease by LICENSED physicians.

Meanwhile, our heartfelt sympathy goes out to the Baiata family. Many of us have experienced preventable suffering and tragedy due to this disease. However, the tragedy is usually not due to Lyme disease itself but to politics, cover-up, vested interests, and bias, often a much bigger threat than the Borrelia burgdorferi organism causing Lyme disease, which we could overcome if the cover-up were exposed fully in the light of day."


- Quoted from MSNBC.com article by John Baiata, All she lost: My sister's battle with Lyme disease, from a comment made by Pat Smith, President, Lyme Disease Association
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Salt and chronic Lyme

Are you getting enough salt in your diet? Salt is essential for all animal life (except land plants). Too much or too little can cause havoc in the body. Studies report that as much as 80% of dietary salt comes from packaged and can foods, and from eating out. It's easy to take in an excess of salt by consuming fast foods, as restaurant dishes are often overloaded with salt.

A lack of salt can be just as harmful as too much, as this elementary mineral is necessary for maintaining the balance of bodily fluids, helping transmit nerve signals, keeping muscles functioning properly and creating healthy blood and lymph.

Many chronic Lyme patients don't eat out due to their illness, and most of us go through at least a short period feeling absolutely yucky enough to keep us out of the public and away from restaurants. A lot of us stay away from packaged foods as well, eating fresh veggies and organic foods as much as possible.

If you eat a diet that is deliberately salt-free, how do you know you're getting enough of the stuff?
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Under Our Skin filmmaker honored



Congratulations to filmmaker Andy Abrahams Wilson, who is being honored this week at a Turn the Corner Foundation event in New York City. Andy's heartwrenching and eye-opening documentary film, Under Our Skin, exposes the medical establishment's frequent dismissal of people suffering with Lyme.

From the press release: Turn the Corner will present the Vision of Hope Award to Andy Abrahams Wilson, Producer/Director of Under Our Skin, a film that investigates the shocking human, medical and political dimensions of Lyme disease, for his efforts to raise awareness for chronic Lyme disease. Leading Lyme-literate physician, Bernard D. Raxlen, MD, will receive the Humanitarian Award for his dedication to treating patients with tick-borne diseases, including Lyme.

"TTC is doing important work for the Lyme community, and has been a great force behind Under Our Skin," said Andy Abrahams Wilson. "Thanks to our joint efforts, the mainstream medical establishment can no longer ignore or marginalize chronic Lyme disease and its sufferers."


Andy is a featured expert in the LDRD's interview series.
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