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Lyme Success Story

Herbs and plants for a healing diet

Dr. Christine Horner was once on the clean-up crew. As a board certified plastic surgeon, she specialized in breast reconstruction surgery for cancer patients.

And she noticed something odd.

Each year, her patients were younger and younger. Breast cancer was an epidemic.

When her own mother died of the disease, she knew it was time to step back and look into the reasons all these women were getting cancer in the first place. Instead of putting them back together following the illness, was there something that could be done to avert it?

What she discovered can benefit everyone sick with Lyme disease.

She became convinced after her research led to the 5,000 year old teachings of Ayurveda. Ayurvedic healing works on the principle that our body has innate intelligence. When our bodies are in balance, that inner intelligence keeps us healthy.

Imbalance caused by illness, such as cancer, Lyme bacterial infection, or unhealthy lifestyle and diet disrupts our innate healing intelligence.

I’ll have what she’s having
While learning about Ayurveda, Dr. Horner made a surprising discovery. Following a luxurious spa treatment and detoxification process called panchakarma, or “five actions,” she looked in the mirror. Her face appeared ten years younger. She had a renewed sense of zest and vitality. In fact, she had never felt better in her life. On fire to put this new discovery to practice, she studied like mad to get certified in Ayurveda.

Schooled in Western medicine and having worked for years as a surgeon, it is important to Dr. Horner that everything she promotes is research-based. Ayurvedic healing is, and it also has a history of development — millions of people experimenting and refining it, over thousands of years. Ayurveda literally translates as “life-knowledge.”

Currently in the West, there is an explosion of empirical research into the natural approaches to health through the uses of herbs and plants for healing, as well as lifestyle factors. The research bodes well, unless you are one of those vegetarians who only eats French fries.

Lyme disease patients on standard antibiotics can also benefit from incorporating some or all of Dr. Horner’s advice. A healthy diet and lifestyle includes many factors, and among the most crucial is eating a varied diet of organic fruits and veggies.

Eat your medicine
“Eating a plant-based diet is considered the healthiest type of diet around,” says Dr. Horner. “Not only do plants and herbs contain vitamins, minerals, nutrients and all the other things we know are good for maintaining our health, they also contain hundreds of phytons.”

Phytons are plant chemicals, powerful natural medicines. Some of them even work exactly like chemotherapy. Pharmaceutical companies study the plants, create a drug that works the same way, and then tell the public that plant medicine doesn’t work.

Ayurveda says that there are fundamental truths about human beings, and that the basic rule-book says that, “if you follow these rules you’ll bring your body into balance. And that balance enlivens your body’s inner healing intelligence,” says Dr. Horner.

Lyme infection obstructs the balance your body is trying to create. So the idea is to do as much as you can to bring it to balance. We’re all different and in Ayurveda there are three doshas and nine different body constitutions. Overall though, the general rules apply across the board.

Strengthening your body’s immune system is the key to regaining balance and good health. The immune system needs a variety of veggies, so vary the produce you consume. Alternating supplements on a weekly or monthly basis can also help insure your maximum benefit.

Two herbs are better than one
Supplements have synergistic effects. When paired with another supplement there is a multiplication of the healing effect. Pharmaceutical drugs do not work this way.

For example, green tea and turmeric taken together are many times more effective than when taken alone. Each of these have antioxidant and anti-inflammation properties which work better when put together.

Dr. Christine Horner has more energy than many teenagers I know. I asked her what she puts in her morning smoothies. She rotates between fruits and green smoothies, and also tosses in a comprehensive list of healthy supplements.

Along with plant medicine, she also talked about the vital importance of having practices such as mediation, exercise, and radical forgiveness. Nurture your spirit, especially if you are dealing with Lyme or any serious illness. Lifestyle factors are as important as eating a healthy diet.

For further information please go to drchristinehorner.com

Podcast

Click on podcast to listen to my 60-minute interview with the effervescent Dr. Christine Horner. She’s got more energy than many of the teenagers I work with. She is a wealth of knowledge and has much more to say than I could include in this post. She also suggests ways to diminish the side effects of menopause.

If you like what you see here, please consider signing up for our newsletter, or become an LDRD member for full access to our complete series of audio interviews. Learn from listening to Lyme-literate doctors and other medical experts.

Breathe deep, eat your greens, and be well!



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New Success Story interview with Linda


My grandmother used to say, “Keep prayed up, and shuffle your feet!”

Linda Warner, mom, grandma, professional, and patient advocate, would probably agree with that homey piece of folk wisdom. She has a story to tell about paying attention to body, mind, and spirit. “You can't get well unless you treat all three!”

In the course of our down-to-earth conversation about her diagnosis and treatment of Lyme, she was happy to talk about the role of faith in healing from serious disease, and often mentioned divine intervention. “God has my back,” she says. And her success story seems to bear that out.

Linda lives in Colorado and is grateful now to have more good days than bad. But for more than twenty years she knew what it like to struggle daily with health problems. Her symptoms included candida, malaise, which is a general bad feeling, and intense anxiety. She followed Dr. Horowitz's protocol, and other means to restore wellness, including an alternative clinician who uses the Rife machine.

In 1989, exhausted and suffering from chronic fatigue, she crashed her car after falling asleep at the wheel. The resulting back injury created major inflammation, and she found relief through chiropractic, massage, and acupuncture therapies.

Professionally, Linda works in pharmaceutical sales, in the field of psychotropic medicines. She recommends Pharmasan Lab's iSpotLyme test. Through pharmaceutical as well as alternative treatments, she missed very few days of work over the years, until November 2013. After taking Dr. Horowitz's protocol and other alternative therapies, she stepped away from the aggressive pharmaceutical treatments in March, 2014.

“Stay away from inflammatory foods,” she cautions. But most of all, listen to your intuition. If chronic fatigue is plaguing you and your doctor doesn't understand it, Linda says to keep digging. Effective treatment should cover all angles, not just one.

“I came from having a black-and-white perspective to looking at the whole picture.”

Please sign into the member’s area to listen the interview with Linda.

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Lyme Success Story - Samson

In spite of the turmoil Lyme can cause, many people are living happy and productive post-Lyme lives. I've had the fortune to connect with a number of them. Samson's story is a really uplifting example.

The first thing you notice about Samson is his upbeat attitude, in spite of the long journey he took back to health. He's a happy young man, originally from Detroit, who worked hard to earn his way into his dream profession, the music business, in L.A. To an outsider, it may appear as if he's always had a lucky star, and that may be true! But the thing he's really good at is not giving up. He's a vivid example of being proactive in your own healing.

His story, like a novel with lots of ups and downs and a happy ending, includes knee surgery for puffiness, an inflamed jaw, a frozen shoulder, tons of research, nightmarish
symptoms and three different protocols in eight months. It also features travel – lots of travel – around the US, to places such as the Mayo Clinic, to seek out specialists to diagnose and treat his illness.

Like shooting a squirt gun
Until he finally found himself back on the road to good health, Samson never stopped trying to find a way to heal from Lyme. The worst period for him was from age 21 to 28. At one point he visited Dr. Andrew Weil's clinic in Tucson, where he was directed to try an Eastern approach. He used alternative medicines and meditation. He read Weil's book Spontaneous Healing, and became a vegan for a year. That resulted in anemia, although it did give him a little relief from his symptoms. At another point, he fasted on water only for two weeks, in another attempt to get down to the root cause, which also resulted in a bit of relief. But it was hardly enough.

Samson was also taking Omega 3's, turmeric,
curcumin, and other supplements. But he says that when you're dealing with Lyme bacteria, taking supplements without taking antibiotics is like shooting a squirt gun at a person who is trying to do harm. It won't stop them, but it will give you the satisfaction of doing something.

curing Lyme disease
Finding confidence
A turning point came one day, when Samson happened on the trailer online for the acclaimed film about Lyme,
Under Our Skin. He proceeded directly to Lyme specialist Dr. Daniel Cameron in New York, and began antibiotic treatment for about three weeks. But his intuition urged him to continue seeking help, and it was only when he walked into Dr. Raphael Stricker's office in San Francisco that he felt confident about kicking Lyme.

Samson, who works as a talent manager and is in scout development in the music business in Los Angeles, has a lighthearted way of telling his story, but anyone who knows how difficult Lyme is, will recognize the cost, the resources, and the steely perseverance he had to devote to healing. Perseverance, and always listening to his intuition, have no doubt fueled his healing journey.

“I've always been very intuitive, and grateful for that!” he says.

Today, Samson has finally won his life back from Lyme, and he's feeling great and right on track, exactly where his intuition told him he belonged.

Join the LDRD to listen to Samson’s story.

Please keep in mind that your success story might just help lift the spirits of someone who needs it most. Call us if you would like to share.




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New practice, new healing

Healing through cross-training
Surprises. Some are fabulous, whereas others we could live without. Before I was diagnosed with Lyme I never would have guessed that it could happen to me. Took me completely by surprise. But the nastiest blow was being told by the IDSA doctor, “Looks like MS. My advice is to apply for disability, get a wheelchair, and get ready to spend the rest of your life in it.”

Needless to say, I changed doctors, and was lucky enough to stumble upon a group of smart ones who had a clue about Lyme, and as much faith in me as I had in myself. I didn't get a wheelchair. I learned to walk, talk, and think straight again even through the pain. Over a period of years, I found ways to heal my body, mind and spirit through cross-training.


Time is a river
I thought about the element of surprise yesterday. A friend told me an anecdote about the way different cultures perceive the concept of time. Westerners and Easterners envision time differently. Both see time as a river.

However, in the West we imagine that events flow towards us from the horizon, approaching the present moment where we stand. In front of us, we see future events as they approach. When the event/time has past, it disappears behind, fading into memory.

Easterners imagine time's river approaching from behind. The future comes up from behind, like a surprise. It isn't visible until it's upon us. As events pass by, they flow away to the horizon, fading gradually from memory, appearing smaller and farther away as they go.

Lyme disease was like that for me. It attacked out of the blue, and engulfed my present moments for many years. But gratefully, as the time of being so sick has faded into the horizon, I see it from an increasingly distant perspective. And life continues to come up from behind and surprise me.


Starting a practice
I recently did something that I wanted to do when I was a teenager, at which time circumstances intervened, so I never got around to it. So it seemed a bit surprising, a little out-of-the-blue when recently I started taking Taekwondo lessons at a local studio. The present moment snuck up from behind once again. But this is no brutal blow like Lyme delivered. It's a nice surprise.

Starting a martial arts practice in my 50s – peri-menopause and post-Lyme. Ha, ha, right? Yes, I have stepped out of my comfort zone. And in spite of however it looks, I'm going for it. Even if I look silly, or have to push myself really hard. Even if I am really bad at it. Which I am. But I will stick with it, because it's fun, challenging, and has benefits for the brain (and god knows, I can use all the help I can get).

In fact, physical exercise is reported to be better for improving cognitive functions than even mental exercise. My brand of cross-training has always included an exercise component, but martial arts is well suited to my needs, because it's a body-mind-spirit practice. You have to find what works for you. When I was fighting Lyme at the acute stage, I couldn't even handle much walking, let alone do martial arts. For help regaining my balance, slower, meditative exercises such as Tai Chi and Qi Gong were well-suited.


Importance of community
The Taekwondo community my partner and I joined is a family-friendly place. Very supportive. Folks are each at their own stage of development. There are lots of women and children, and people of every age, from three-year-olds to at least one 70-something. Some have been at it for years, some are newbies. Everyone has something to teach or offer.

I practiced with a 5 year-old yesterday whose listening skills were, embarrassingly, better than mine. As instructed, he nonchalantly executed five perfect kicks in a row. Meantime, I lost track of count and lost my balance. Ten minutes later, I was mirroring an economics professor, a black belt. He helped me aim my roundhouse kick more precisely. Following that, I sparred with a woman ten inches taller and four years more experienced than me.


Astonishing turnaround
Another beginner, a 43 year-old pediatric endocrinologist (I know, it's a mouthful), told me she had decided to start training because of a patient of hers. He is a member of the community too. She saw him go through astonishing changes over the course of his seven years of practice. He is 18 now, and was diagnosed with diabetes at age six. He had been overweight and at times severely depressed. Last Saturday we watched him skillfully earn his first-degree adult black belt. Afterward, he read aloud a personal essay he'd written about his healing journey through martial arts. He's headed off to college, a dream that when he was child, he assumed would never come true.

But the future is full of surprises. Some surprises we will abhor. Others we appreciate. Perhaps in the end it equals out, I don't know.

Can you recall any good surprises in your life since Lyme? If you're not there yet, it's okay. Sometimes it helps to hear stories of courage and victory. Other times, not so much. It depends on where you are on your path. My wish for every person suffering from Lyme or any chronic illness is always this: Persevere. Find the right healing path, diet, medicine, and Lyme doctors for you. Find a community of people who will cheer you on, offer you a hand up when you lose your balance, and celebrate your victories when you succeed. The river of time is on your side.

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Paying it forward = Stress relief

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

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

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

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

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

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

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

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

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


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Video games and art as therapy


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Dr. Phil sheds light on chronic Lyme treatment

Dr Phil brought mass attention to “persistent Lyme disease” on his show last spring. Fashion model Stephanie Vostry who was featured on the show appeared sick, fragile, and miserable under the studio lights. Watching, my heart went out to her, and to weathercaster Brooke Landau and a longtime Doctor Phil staffer who were seated in the audience, and who also shared some of their experiences with what they termed chronic Lyme disease. If you are very ill at this moment, please judge for yourself how much you want to watch of the clip, which includes footage from Under Our Skin. This stuff is disturbing. And real.

Stephanie’s treatments have put her in financial jeopardy. She started an online campaign at
gofundme.com to raise money to pay for her Lyme treatments. So far she’s raised over $10,000 toward her $20,000 goal.

The show was difficult to watch, and I think it raised my anxiety level about 300%! I am grateful to Dr Phil for shedding light on this controversial disease and on the use of long-term antibiotics. Even though I’ve been in the state that Stephanie is in, I realize now how thoroughly I have disconnected from the memories of being that bad off. What amazes me about Lyme disease is that you can go through utter hell, physically, mentally, emotionally, spiritually and financially, and that you can come back to life. It really has been literally like being raised from the dead.

Have you watched the show? What did you think of the way
Lyme disease was presented to the public?

Watch
Under Our Skin for free on Hulu.


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Success story: Late Lyme diagnosis with a happy ending

Mary C. of New Hampshire feels that the time is now right to share her story. She has weathered severe storms to get to this point, including a grand mal seizure, two months isolated in a recliner and two years on the corticosteroid Prednisone.

“Yes, I’ve been prescribed the wrong medicines, and yes, it’s taken a long time to get well,” she says.

But her message to those who are struggling with Lyme? “Don’t give up!”

Mary’s Lyme diagnosis came at a price of many long years. Listening to her story, it seems incredible how many medical professionals offered her questionable advice and ignored obvious signs. For example, she was not tested for Lyme disease even after suffering the seizure. The doctor who examined her told her that “people have seizures all the time.”

She compares her situation to that of a prisoner, wrongly jailed for years, who finally meets a lawyer determined enough to investigate the truth. Finding the prisoner innocent, she is set free at last.

She says, “I’m 58 years old but I feel like I have a new life.”

As for spending so many years “in jail” with the wrong diagnosis, Mary is far from blaming doctors and medical experts. She reminds us, “that is why we call it practicing medicine. We haven’t perfected it yet. And chances are good that those doctors were doing their best with the knowledge they had at the time.”

Admiring others who have told their stories of healing from Lyme, she keenly observes that several are professional athletes, such as Perry Fields, who possess a deep inner drive to push themselves with Herculean effort.

Mary, who has owned and operated an automotive business with her husband for more than 30 years, says, “I’m not an expert in anything. I only have a small amount of that type of drive. I want to talk to people who are more like me.”

Although she may not agree, personally I think Mary’s long struggle for a correct Lyme diagnosis also contains a ring of heroism.

For 26 years she worked her way through a confusing maze of misplaced assumptions and misdiagnoses. She was told she had Lupus. But the diagnosis never felt right to her.  

At one point, a doctor pointed out there was no way Mary could have Lyme disease, because of course, that only existed in Lyme, Connecticut!

At last, in a particularly heart-rending turn of events, both Mary and her mother were diagnosed at the very same time. Her mother died of cancer just five days later. However, she got the opportunity to tell her daughter that she could go and rest in peace, knowing that Mary had finally received a correct diagnosis and could now get the right sort of treatment.

After 26 years, she finally knows what she’s dealing with. And now, this self-described, “overweight, carbohydrate junkie” begins her days with a cardiovascular workout on the elliptical and bike, and eats healthy foods. It’s been a long journey, but today she is well on her way to living healthy and Lyme-free.

Her nurse practitioner’s advice? “Whatever you do: keep moving, keep moving!”

Mary will never forget the afternoon she spent, back in 1986, helping a friend clean out a shed.  That day a tick bit her ankle, but she didn’t discover it, embedded and engorged, for two days.  Her leg swelled and she developed a bullseye rash. At the time, neither she nor her doctor knew anything about Lyme. They assumed she was having an allergic reaction to the tick bite, and he prescribed Benadryl.

And that was just the beginning.

I invite you to listen to Mary tell her story in her own words.


Join the LDRD to hear the interview and over 20 other success stories along with over 20 interviews with Lyme experts.

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Lyme Success Story! Treating every angle

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

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

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

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

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

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

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

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

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

Join to listen to the interview.
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Sweet Alternatives: Splenda or Stevia?

Have you thumped your thymus lately?

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

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

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

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

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

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

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

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

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

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

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

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

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An integral approach to healing from Lyme

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

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

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

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

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

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

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

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

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

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

Learn more about this approach on the
Beat Lyme page.
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Healing from Lyme - Part 3

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

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

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

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

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

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

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

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

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

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

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

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

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


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Healing from Lyme - Part 2

Before receiving the correct diagnosis for Lyme and coinfections, a dermatologist had put me on Prednisone to try and control my severe skin rashes. This was a nearly fatal mistake on his part. It marked a crisis point in my illness. I also received lectures by this doctor about how I “really should stop scratching myself raw while I was sleeping.” I wasn’t sleeping, and I knew he was wrong. The skin on my body wasn’t opening up due to scratching it. It was infuriating not to be heard.

He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.

A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.

In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.

We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.

That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.

Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.

During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.

Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.

I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.

In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.  


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Healing from Lyme - Part 1

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

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

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

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

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

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

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

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

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

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


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Tennis star beats Lyme disease

Beautiful and powerful tennis star Samantha Stosur faced her formidable opponent squarely. In 2007, she was struck down with Lyme disease, battling severe fatigue, skin rash, and other symptoms that ripped her off the path to stardom. Since that time, she has not only beat Lyme disease, but also proved herself as a force to be reckoned with on the tennis courts.

Why do athletes seem to have a superb ability to beat Lyme and other serious diseases? There are probably many reasons. We believe it has something to do with maintaining a positive mental focus on winning (putting mind over matter), and regular exercise, which warms up the body's core temperature. Although Sam was unable to exercise (or indeed, even take care of herself) while the disease was in an acute phase, she did return to training and competing as soon as she could muster the strength.

Athletes engage in a program of regular vigorous exercise which raises their body temperatures on a consistent basis, which induces sweat. The raised temperature heats up the body's environment, keeps the lymph flowing at a healthy rate, and kills off toxins and bacteria so they can be carried away in the sweat and washed off.

This is a recent story that probably didn't escape your attention if you are a tennis fan and you have Lyme.

Watch a brief interview with Sam.




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Darryl is back--Listen to his success story

Pro bike racer Darryl is counting the days to an upcoming race in April. Twenty-one months of hardcore antibiotic treatment are now behind him, including IV Rocephin, Zithromax and a go-round of Flagyl and Mepron last summer. 
 
Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" fun bike race, a twenty-six mile, grueling uphill bike course that kept him "in the saddle" for four-and-a-half hours. I don't know about you, but I can hardly stay seated for more than one hour, and that's without peddling of course, without having to stretch and take water breaks. You can hear the surprise in his voice, and the satisfaction at his accomplishment as he describes the effort it took to finish that ride. 
 
Darryl's impressive athletic achievements are no accident. A self-described "numbers guy," he has long been a devout record keeper, tracking his heart rate and other bodily systems with the eagle eye of a master coach. In fact, he is a coach, and takes his role seriously. A handful of Lyme patients have been lucky enough to come into Darryl's orbit, and he helps keep them on track with their Lyme-related needs. Knowing the hell that awaits someone with a positive diagnosis of Lyme disease, he aims to mitigate the bureaucratic and other various challenges that await them. 
 
Some of Darryl's key points for beating Lyme:
 
Be a warrior. Don't allow anything to stop you from seeking treatment. Darryl saw 35 doctors before receiving a positive diagnosis for Lyme. He is passionate about standing up for yourself in the face of stubborn insurance company policies. His advice when your insurance company refuses to pay for tests and/or treatment that you and your doctor know are necessary? Appeal, and stay with it. Do not give up the fight. If you can't do the fighting, get someone who can fight for you until you can. 
 
Be organized and monitor your progress. Keep your medical files together in one place. Statistics such as test results, enzyme counts, heart rate, weight and the dates of measurement are important, and so are their fluctuations. I love this--Darryl uses spreadsheets to track his numbers. Why didn't I think of that? Carefully monitor your progress. Keeping track of meds, supplements and foods on a spreadsheet is a great idea too. 
 
Put yourself first. We hardly even need to mention this one. While it seems like such an obvious point, it is nevertheless quite difficult for a lot of people to pull this one off. Are you the main caretaker for a busy family? Find a way to take time for yourself every single day. Get enough sleep. It takes whatever it takes to get well. Your family might have to adjust, but rest assured they'll be overwhelmed with relief when you get better. 
 
And finally, exercise, exercise, exercise. That's a direct quote. Even Darryl's mom (who also has Lyme) rides the bike he gave her indoors, in front of the telly. Do what you can to sweat out the toxins every day. Build muscle, which will help your immune system build strength. Darryl addresses this whole issue of exercise with compassion for those of us who suffer with crushing fatigue. He's been there too. 
 
The really, really great news? Darryl's better! 
 
Get your water bottle, jump on your stationary bike, hop onto your mini-trampoline and put on your headphones. Listen to Darryl's interview here. 
 
Listen to the entire interview with Darryl for free!

Podcast - This is a long interview, so it may take awhile to load, please be patient.
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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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Call for Lyme success stories

I know from experience that when you're in the thick of an acute illness such as Lyme, all your energy is spent on getting better. The pain can be so constant and overwhelming that you lose sight of what being healthy is. You might not think you can get there ever again. Sadly, we know that this disease can sometimes take an irreversible tact. You don't have to search far to encounter grim stories of people suffering with Lyme.

However, many people do recover from this profound illness. I recently took a road trip with my significant other, attended a family reunion, and reconnected with friends I cherish. Life is so astonishing sometimes, so precious, that now I have complete days when I totally forget how sick I've been, and what a long, slow climb it was back to a state of health.

I've been collecting Lyme success stories almost from the time I was diagnosed, because I felt strongly that if someone else out there had healed from Lyme, then I could too. My parents brought me up to share good news, so I'm still gathering success stories that others can learn from and be inspired.

Have you recovered from Lyme disease? Are you well on your way to a healthy, post-Lyme life?

People take so many different paths back to living a productive life. Many are able to follow a Lyme-literate doctor's protocol until they're Lyme-free. Many aren't able to afford that luxury, and so they use a combination of protocols and techniques that seem to help. Some are on a strict diet, and they claim that it has helped them walk away from Lyme. Some use herbal therapies and devices such as the rife machine. And considering how bone-crushingly weary Lyme can make us, I'm always impressed by the numbers of people who swear that rigorous physical exercise played a central role in their healing. Many of the people we've interviewed in our Lyme success stories, such as arryl's Lyme success story">Darryl, who races bikes and works as a professional Hollywood stuntman, talk about applying the mental rigor, discipline and intense focus they honed as a competing athlete, to the path of healing.

Walking away from Lyme is something we all desire to do one day. If you've been successful in doing so, please consider sharing your success story with others. You never know when something you say might trigger an idea in someone's head and help them turn their health situation around for good. You won't be telling other people what to do. You'll simply be relating your own experience, which is in itself, a powerful sort of medicine.

Contact me directly for further information about sharing your Lyme success story.


Thank you.
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Stephanie's Lyme Story

You would never detect disabling pain in Stephanie's calm, cheerful voice. She sounds energized and prepared to face the future, confident that the protocol she's on will help her fully recover from Lyme. Although she feels better now, the 39 year-old has endured many years of suffering and misdiagnoses, including two years when she was confined to bed. She had recently graduated as a registered nurse when she discovered that her mysterious symptoms indicated that she had Lyme.

Her course instructors in medical school "never even mentioned Lyme disease," she says. "You'd think they would know something."

Stephanie and her husband want to have a couple of kids, but wish to wait until she gets the all-clear signal from her Lyme doctor. The illness has been tough on the couple financially. She lost her medical coverage because she could not continue to work outside her home, and she estimates that their total out-of-pocket expenses have topped $100,000. As a newlywed when she first discovered how sick she was, she's definitely looking forward to leading a fuller life with her husband.

"He's still looking forward to the 'in health' part of the marriage vow," she laughs. "He's done the 'in sickness' part."

She is optimistic about the future, now that she has been in treatment for six months with Dr. Daniel J. Cameron, MD , of Mount Kisco, New York. Dr. Cameron is the current president of the International Lyme and Associated Diseases Society (ILADS).

Initially, doctors explained Stephanie's symptoms as being caused by a Brown Recluse spider. They told her that nothing could be done except bed rest. However, as she slowly began to put together the pieces of the Lyme puzzle, she eventually recognized that she had most of the classic Lyme symptoms, including rheumatoid arthritis and unbearable fatigue. Fortunately, her research led her to Dr. Cameron.

LDRD members, please log in to listen to Stephanie's story, and hear details of her antibiotic protocol and other supplements she has found helpful.
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Why should you share your success story?

Not too long ago, I was unable to think, walk, talk or write due to the Lyme bacteria attacking my brain and speech centers. When I think about how hopeless and helpless I felt then, I can hardly believe it. So thoroughly has my life turned around for the better that it's hard to conjure even a wisp of memory of the dread and fear that enveloped me. I wasn't myself.

I've recovered, fortunately, and now find that my experience is very typical of people who've recovered from Lyme. We don't want to think about the dark days, don't care to recall them. Living an engaged and vibrant life again is an experience more precious than gold. Who wants to remember a brush with death from a Lyme infection, when there is still a lot of living to do? However, those of us who have recovered (or are in the process) can do more good by sharing our success stories than by slamming the lid down on that sick, shadowy time in our lives.

Lyme is the fastest growing vector-borne illness in the US. Each day, more kids and more adults -- from every walk of life -- are experiencing the harrowing mental confusion and searing pain that can accompany this multi-stage disease. Lyme disease-educated doctors are in short supply, and even amid increasing numbers of people diagnosed with Lyme, a cloak of mystery and misunderstanding still surrounds this illness and its treatment.

Lyme has proved to be a very personal disease, affecting each of us differently and to varying degrees. However, sharing our personal experiences is a valuable way to help. What works for you may not work for another person diagnosed with Lyme. Yet hearing about your struggles and listening to the elation in your voice can work a world of wonder for someone who is hurting.

We collect Lyme success stories and share them with the people who need them most. If you're beating Lyme and you want to tell others, please feel free to contact us.
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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.

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Katy's story: Teens & Lyme

Katy says the hardest thing about having Lyme is that nobody understands.

She has trouble with word recall. She is susceptible to low blood sugar crashes. She is 15, and like so many others Lyme patients, at first her doctors misdiagnosed her condition, believing instead that she had a viral infection such as mononucleosis or Epstein Barr.

For six months Katy struggled against crushing fatigue and a painful skin rash, trying her best to keep up in school. Medications for the ailments doctors thought she had were only making her sicker. Her skin rash became so acute that her parents began to suspect their daughter might have contracted a flesh-eating virus. Fortunately, her grandmother, a registered nurse, listened carefully to her complaints and suspected that it might be Lyme. Her grandmother insisted Katy see a Lyme specialist. Katy's prognosis changed for the better when she received a correct diagnosis and subsequently began treatment with Dr. Chandra Swami, of Heritage, Pennsylvania.

Adults dealing with Lyme find it to be an alienating and frightening experience, but try being a teenager with Lyme -- and on top of that, a high-energy competitor. Katy excels in running and cheerleading and she is avidly honing her journalism skills and other pursuits. Her aim is to be a broadcast journalist, and in fact she is currently the "weather girl" for the local news station, which airs at her high school. Short-term memory loss isn't something that a young person should have to deal with. Imagine trying to survive the rigors of a normal school day!

For example, one day at school after diligently producing a video project and forgoing lunch, Katy experienced a vicious attack of low blood sugar. Recognizing that she'd better eat something immediately, she took out her sack lunch.

A school administrator snapped that she wasn't allowed to eat lunch sitting where she was. "Should I let all 900 students eat their lunch in here?"

"All the other 900 students don't have Lyme disease," countered Katy, put in the terrible position of having to defend herself for being ill.

One of the problems, says her mom, is that Katy looks great. She's vibrant and rosy-cheeked, and appears perfectly healthy. There's really no way for her teachers and school administrators to tell, simply by looking, that she struggles with painful symptoms every day.

Members, please login now and listen to Katy tell her story. Just wait until you hear what her lunchtime video project was all about, and why it was so engrossing that she forgot to eat. This young woman is a genuine inspiration.

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Joe's Lyme success story

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

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

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

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

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

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

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

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Tell Oprah your Lyme story

UPDATE: The link for Dr. Oz has been removed by Oprah.com.

Oprah is interested in Lyme disease. Apparently the Lyme documentary, Under Our Skin, is getting under hers!

Click on the link below and tell your Lyme story to Oprah's Dr. Oz. If you want somebody to actually read it, keep it short, around 100 words. That's not a lot of room. Just include the date you were diagnosed, how--and if--you found a doctor to treat you, and what you're doing for Lyme treatment.

Dr. Mehmet Oz is professor and vice chairman of surgery at Columbia University in New York City, director of the Cardiovascular Institute and founder and director for the Complementary Medicine Program at New York-Presbyterian Hospital. He is a regular contributor to The Oprah Winfrey Show and Oprah.com.
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Darryl's Lyme success story

Darryl is a professional athlete. He races mountain and BMX bikes, and works as a stunt man in Hollywood. When I asked how he would classify his story, he didn't hesitate to call it a success. "I'm 100% better," he says, confidently. You can hear the relief in his voice. Talking about his future, he mentions his work and racing, but it's clear that suffering for so many years with undiagnosed Lyme has influenced his outlook as well. He's now devoted to telling his story wherever he can, and is passionate about helping others.

LDRD members, listen to the interview with Darryl.

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Jerry's Lyme success story

"Work with your doctors, be your own best advocate. Do research, and get a second, third, tenth opinion," says Jerry. "There is life after Lyme disease."

For Jerry, the difficulties of Lyme are a thing of the past. Although it took its toll on every day life, and his marriage couldn't hold up under the strain of the illness, he now leads a full, happy life. He's active and loves his work as a professional consultant, and proud of his two daughters, both college graduates. However, for several years during the 90s, Lyme was a force to be reckoned with.

In 1994, he and his family went for a weekend at their cabin in upper Lake Michigan. Upon returning home, he spotted a tick buried in the skin on his ankle. Over the next weeks and months, he experienced painful, swollen joints, especially his knees and fingers.

In January, 1995, Jerry was diagnosed with Lyme disease. Aside from joint pain his symptoms included severely bloodshot eyes and blurred vision that came and went. As a well-educated Lyme patient, he got used to toting a large notebook of his own to his doctor visits. A particular combination of antibiotics seemed to finally make the difference, especially when his doctor was willing to give him the winning combo for a whole year, as Jerry requested. He endured the repeated Herxheimer reactions in order to stay on the medicine long enough to fully eradicate the Lyme infection. But his problems weren't over yet. The next year, while Lyme was still active, he was also diagnosed with coronary artery disease.

While Jerry is not overweight, is an avid exerciser and non-smoker, his cardiac problems led to two different bypass operations and several angioplasties. To this day, he and his cardiologist wonder whether the Lyme infection had anything to do with his heart problems. Jerry believes that a lot of his health problems began with the tick bite.

The elements of this story are familiar, although in some ways Jerry's story is quite unusual. For example, over the entire course of his disease, his treatment was covered by a generous health insurance plan through his employer. I told him he was luckier than most. He agrees.

In March, 2007, he got a Golden Retriever to accompany him while pheasant hunting. One day, he took the dog for a run while riding his bike. A half a block from home, the dog bolted...the story continues.

LDRD members can listen to Jerry's interview. Learn about becoming a member.

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CJ's Lyme success story

"You've gotta hear this!"

That was the subject line in CJ's note to me the other day. Turns out she was right -- I did. I just hung up this minute from our conversation, and I'm still smiling. She's one of those sunshiny souls that just can't help but affect people that way. What does she do for a living? She's the office manager of a trapeze school. Not your normal occupation, but then CJ isn't your average person. Actually, she participates in ironman competitions. Does she still have Lyme? Yes. Does she let it bring her down? If she does, she's not letting it show.

CJ's success story, like everyone who has struggled to defeat the disability that can accompany Lyme disease, comes at a price. She was misunderstood and misdiagnosed for a long time. As a teenager, she attended music camp where she concentrated on her highly developed skills as a flautist. Gifted on both the flute and piccolo, and disciplined about practice, she was headed for a life of professional music.

However, a tick bite that she got at camp stopped her in her tracks. She called home, begging her puzzled mother to let her leave early. Her mom knew something was seriously wrong.

CJ's story takes many jogs and unexpected turns. She falls in love, marries, then deals head on with an unsupportive spouse (a bastard and a s^%#head, to quote her precisely). And the most remarkable thing happens. She finds inspiration in a nine-year-old leukemia patient facing two years of chemotherapy. She is a nurse. At his bedside, she tells him that she's going to run in a charity race on his behalf. He looks at her, asks "can you run?"

LDRD Members can login (to the left) and listen to CJ's story.

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Who inspires you?

I'm a huge Amy Tan fan. If you haven't read her novels, you're missing out on some super funny and insightful stories. Read this and whet your appetite. I remember when I found out shortly after my Lyme diagnosis that Amy Tan also suffered for years from misdiagnosis and severe neuroborreliosis. Reading her story, I hung on every word. Of course, I had to read s-l-o-w-l-y. At that point, it often took me hours to comprehend one page of information. I determined that if the brilliant Amy Tan could slip so low and still pull herself out, I could too. She knew how tough it was. You know how it is. I don't want to be in this club, but since I have no choice I'm going to look around and find someone to inspire me.

Musician Darryl Hall was diagnosed with Lyme the same week I was. I feel solidarity with him. Another fabulous novelist, Rebecca Wells, has Lyme. We've got some great role models. GW Bush has had Lyme, and the White House doctors say he's fully recovered. Alice Walker, another amazing writer whose work I've always loved, has had Lyme disease. Just knowing we're not alone, and in fact, we're in some pretty good company, makes me feel a smidge better. Tell me, who inspires you?
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Rick's Lyme success story

Rick, an active sports-lover, was married and starting a family. He was a runner, a cycler and a swimmer. His northern California lifestyle was the type most people can only dream of. "I would water-ski, snow-ski, do anything I pretty much wanted to, looking back. Then I'd hang out with my family, get into the car on the fly, and still have energy on the weekends," he says.

One day he woke up with a frozen shoulder. He was diagnosed with Rheumatoid Arthritis. Although Rick had been tested for Lyme, the tests had come back negative. His RA doctor told him, "Lyme doesn't exist in California. It's probably not that. You just need to consider that you have arthritis. Then he added, right in front of my wife, 'you have to trust the experts to help make you better,'" says Rick. He laughed. "I'm in sales," he explains. "Whenever I hear somebody say 'trust me,' I know I'm going to get f****d."

His RA doctor recommended surgery, which he had. The pain was still unbearable. He was sent from doctor to doctor and no one knew what the problem was. He spent over $25,000 in medical tests without receiving any answers. He was placed on medications that never seemed to help, and only made things worse. At one point, he was popping sixteen Advil per day, eight in the morning and eight at lunch. At night, he self-medicated with wine. The entire time he was sick, he hid his painful symptoms from everyone he worked with, and never complained, even to his wife. But he wasn't getting better and knew he couldn't go on like that.

Finally, at his wife's suggestion, he realized that he had to trust yet one more doctor. He had Googled "Lyme + doctor" and found a clinic in nearby San Francisco. He walked into the office of ILADS physician Dr. Raphael Stricker. When Dr. Stricker told him he had Lyme, he was flooded with intense relief. After only three weeks of treatment, his symptoms began to disappear.

Rick now considers himself to be about 90% better, and he's been able to return to some of the activities he loves. How did having Lyme change his life? In so many ways, he says. Specifically, his empathy for other peoples' hardship and pain. "My family says I'm nicer now," he adds, laughing.

LDRD members, you can listen to Rick tell his entire story in the members area.
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Waiting room - Lyme story

I was sitting in the crowded, stuffy waiting room, when the guy seated across the aisle started talking.

"I got a rash all over my chest," he said to no one in particular. "They gave me the wrong blood pressure medicine," he continued. "Can you believe that? I can't sleep, it itches so bad." He went on explaining the details of his story and the painful rash, eventually reaching up as if to unbutton his shirt to prove it. I buried my nose in my magazine. The man stopped, looked around to see if anyone was listening. No one was. He leaned toward me. "What's wrong with you?" he said. "You don't look sick."

My long skirt hid the white gauze bandages wrapped around both shins from ankle to knee. Beneath the gauze, the skin on my legs was hamburger from a mysterious rash that had been getting worse over the course of the past eight months. I'd been practically living on an alkaline diet, including lunches of delectable dandelion greens, and downing numerous turmeric capsules, since a holistic doctor had told me that I had eczema. I didn't drink, smoke, and I could count on one hand the times I'd taken antibiotics in my entire lifetime. I wasn't the type to get eczema, and that diagnosis had taken me by surprise. Even so, I religiously followed the doctor's suggestions. Still, I'd had no luck with the nasty rash. When the pain became so vicious that I could no longer even walk, my boyfriend drove me to the ER. Before walking into the waiting room, I'd spent the weekend on IV antibiotics. The ER docs informed us that I had almost died from a staph infection on the verge of going septic.

The man may not have noticed the cane leaning next to my purse. I smiled weakly. "I don't know," I shrugged. He narrowed his eyes, as if I was withholding something he deserved to know. Then he nodded and sat back.

My heart leaped at odd intervals, like a fish jumping in a shallow stream, making it hard to catch a deep breath. The one fan circulating in the room didn't do much to relieve the stuffiness. The dull headache I'd had for a week seemed worse under the florescent lights and the blaring TV high on the wall. An attendant in a green tunic appeared from the hallway and glanced at her clipboard. When she called my name, I stood and steadied myself with the cane and proceeded to walk as well as I could toward the hall. Vertigo gripped me, making me lose my balance. I almost bumped into the knees of the man with the rash. "M.S.," he muttered.

I stepped on the scale in the hall. The attendant adjusted it and recorded my weight. In the doctor's office, she took my blood pressure, handed me a hospital gown and left the room. I sat on the stainless steel table under the glare of the florescent lights, and waited again. So this is what public health care looks like, I thought. What was wrong with me? I had always been healthy, was always the one to choose carrot sticks over potato chips. On top of that, I was happily in love, and even starting a new business. In a million-zillion years, I never dreamed I'd be in this position. But here I was, in a small California coastal town, in the middle of my life, in such a weakened state that I could barely recognize the thoughts swimming through the thick fog that had descended in my brain.
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Beating Lyme

Before Karol, a diagnostic technician, received a correct diagnosis for Lyme disease, she saw 14 doctors over a four year period. One after the other, these well-educated (though ignorant about Lyme) physicians tested her for many conditions. Karol lives in Texas, and according to the region's doctors, "you can't get Lyme in Texas." So, they searched for the cause of Karol's pain and sickness. Early on, she did get tested for Lyme, but since the test was negative it was ruled out and forgotten. She could have a brain tumor, they suggested. She might have multiple sclerosis. Whatever the reason for her seizures and dizziness, the doctors never suspected Lyme.

One day, she happened to catch a nurse practitioner on the television news, talking about the difficulty of diagnosing Lyme disease. Listening to Ginger Savely, FNP, Karol made the decision to go and see her. "I wasn't very optimistic," says Karol, about receiving a diagnosis. After all, it had been four years. When she did get positively diagnosed for Lyme and began antibiotic therapy, she was thrilled. "That's weird, I know, to be so happy about having a disease," she says. However, the affirmation gave her the strength to fight it. Like so many of us, she found the experience of not-knowing, for so many years, to be almost as debilitating as the disease itself.

Karol now describes herself as 95% better. Listening to her story is both familiar and uplifting. She's a testament to patience and persistence through suffering and confusion. She talks about the ways that Lyme changed her life. Her attitude is upbeat, and she believes that positive thinking has a definite place in her personal healing journey.

LDRD members can login and listen to Karol's story.
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