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Actively healing from Lyme

“The more you see, the more you care. The more you care, the more you participate.”
-- Diane Hamilton

As a supporter of a multi-faceted approach to healing chronic Lyme, I try to read widely and
consider many different types of advice from a wide range of teachers and experts. The quote
above is from one of my meditation teachers. She is referring to the benefit of developing
the ability to see more perspectives. To see is to acknowledge and recognize the value in a
perspective that may be different from one we normally take.

I think this is valuable advice, particularly in light of
Lyme treatment where so much contention
divides doctors, limiting their points of view instead of expanding them. Does it have to come
down to “either/or” choices between Western medicine and natural or alternative therapies?
Or can we embrace a healthy “both/and” perspective to include whatever works best for each
individual?

What works for one of us may not work for another. Further, what works at one stage may
not be best for another stage. In my own case, it’s taken some careful experimenting to find
out what works. For example, I began treatment on what used to be known as an “antibiotic
cocktail,” which included several different strong antibiotics administered orally for at least six
months. But when I couldn’t afford to continue, I started the
r Cowden's updated Lyme protocol">Cowden protocol. I stayed on that
for about three years. I switched to Teasel root extract after that. And now, I take a handful of
supplements every morning and remain stable and healthy.

But the key to my current state of good health, I’m convinced, is that multi-faceted approach. I
am devoted to strengthening my body as well as stretching it, so I do strength training exercises
as well as yoga. I cured a frozen shoulder using these exercises a few years ago, when most of
my
Lyme symptoms were well on their way out. I knew another woman at the time who suffered
from the same painful condition in her shoulder. She was able to afford treatments administered
by a chiropractor, who used electricity to break up the adhesions. She regained use of her arm
about a year into treatment. My arms continue to get stronger and feel fine, all through simple
push-ups and yoga. We both got the treatment we needed. Hers was passive. Mine was active.

When we do whatever we can to help ourselves heal, we become stronger and more aware.
Our healing is not only in the hands of the doctors, although I thank god for good doctors
every day. It’s in our own hands as well. It isn’t an either/or situation. It’s a both/and. Trust your
instinct. Read tons. Use every approach you can think of, diet, exercise, meditation, study,
medicines -- prescription and/or complementary or alternative.

In the New Year, let’s continue to use all our awareness to develop a more comprehensive path
of healing from Lyme at any stage. Let’s see more perspectives, allow ourselves to care more
deeply, and participate more vigorously in our own healing.
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Video games and art as therapy


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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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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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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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Top US Athlete beats Lyme

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

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

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

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

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

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

Become a LDRD member and listen to dozens of interviews with both Lyme experts and ordinary people like you that struggle with Lyme disease.
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Anti-inflammatory diet can help

Inflammation is an immune system response to stress and toxins. Our bodies deal with Lyme infection by sending more blood to the irritated areas. The main features of inflammation are redness, swelling and pain.

It's difficult to eliminate the borrelia bacteria, so inflammation results, causing pain and wrecking all sorts of other havoc. On top of that, we must deal with the psychological or physical stress caused by the pain. And aside from the toxins that accompany and make up the borrelia bacterial complex, dealing with environmental toxins is generally a daily effort.

Antibiotics and herbal protocols are excellent help, but what else can be done about inflammation? This is where some people with chronic illnesses turn a critical eye on their diet and nutrition. And many claim that an anti-inflammatory diet can be a huge help in maximizing their healing protocols and helping to alleviate the intensity of Lyme symptoms and flaring herxes.

So, you're starting to feel a little normal after such a long fight with Lyme. Don't surrender to that deep dish cheese pizza! (Of course, a little treat now and then does the body good.) Steam delicious veggies instead, such as Swiss chard, kale, or mustard greens. Fix organic brown rice or rice noodles to go with them. If you can tolerate it, a bite of organic dark chocolate can make a yummy dessert.

Watch this blog for interviews with nutritionists and herbalists who work with Lyme patients, and delectable recipes for an anti-inflammatory diet. Remember, you don't have to change the way you eat forever -- you just have to give your body a break for a while, so your immune system response can strengthen. Eliminating foods made with wheat and dairy -- or at least, limiting them -- may boost your energy and reduce inflammation and pain.
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Diagnosing Lyme: Lies & half-truths

It irks me to see inaccurate info about Lyme on health-oriented blogs. For example, I just read the sentence: "Lyme is completely treatable. No need to panic," and now I'm really bugged. No, I don't want everybody to panic. However, it's just such unfounded casualness about Lyme that creates the illusion that one needn't seek a Lyme aware doctor's advice right away, at the first suspicion of Lyme symptoms or the presence of a tick bite. There is absolutely no evidence that the person making the claim has any awareness of just how dangerous, and multi-stage, Lyme can be when left untreated.

The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."

How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
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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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