Lyme Disease Research Database Independent reporting on all aspects of Lyme Disease

Lyme Disease Story

Lyme Book Excerpt - The Ghost Caller

You may know that Prednisone is contraindicated when you have Lyme. Ever wondered what would happen if you took it anyway? Before my test results had come back from IGeneX, I was prescribed steroids to stop a spreading rash.

When I finally found a doctor educated about Lyme, he expressed deep concern when I told him about the steroids, which had been prescribed by an IDSA doctor. They had replicated the Lyme bacteria, driven it into my organs and across the barrier into my brain.

The day I started on Prednisone, I began to experience auditory hallucinations--the kind you hear, not the kind you see. I also had kinesthetic hallucinations: I would wake up from a nap convinced I had a raging fever. But the thermometer always read 98.6.

The steroids took a big toll, emotionally as well as physically. The irony was, they didn't even stop the rash completely. So in my fog, I reasoned that I had to keep taking them—follow the doctor's orders. By the time I mustered the guts to disobey the doctor and stop taking it, the damage was done. I couldn't walk, talk, or think.

The following is an excerpt from my ebook, available soon:

So, I took the Prednisone. And life as I knew it started to disintegrate. As the undetected Lyme bacteria began destroying my immune system, it collided with the corticosteroids. I began to learn what it meant to fall apart.

I was in the kitchen when the phone rang. I answered. Wrong number. It rang again; I picked it up. Again, a little girl on the other end asked for someone whose name I did not know. 

Again, I told her she had the wrong number.

But the phone kept ringing. 

Each time, I picked it up and said hello. As soon as I set it down, it would ring again. To the same exact little girl I said, “sorry, wrong number.”

By the third time, I was angry and my voice was rising in pitch. “Please stop calling me,” I said. “Wrong number! Which word do you not understand?”

By then I was fuming, staring at the phone like a snake at a mouse. This was ludicrous. No normal person would keep on calling over and over, thinking she was going to get it right eventually. Isn’t that the definition of insanity? Doing the same thing repeatedly, expecting different results?

When the phone rang again, I flew into a rage. 

From another part of the house, Evan heard me yelling into the phone. He appeared in the doorway. My heart was beating fast. I wanted to hit something. I slammed the phone down hard.

“What's going on out here?” he asked.

I shot him a look to kill. “Some stupid moron will not stop calling! She’s got the wrong number.” 

He looked at me. “I didn’t hear the phone ring. Not once.”

“You were in the shower!”

“I was in the bath. I would have heard the phone,” he said. 

I am outraged at his bullheadedness. “Well, if it hasn’t been ringing, what are you saying? I’m crazy?” 

My head wobbled on my neck and I collapsed into a chair, choking back tears. I had tremors and a stammer.

Evan headed for the door. “Why don’t you call your mom,” he said, before pulling it shut behind him.


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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.

Join the LDRD to listen to all 16 Success Stories along with the 17 Expert Interviews.



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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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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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Lyme disease at the center of JP Morgan failures

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


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


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


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


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


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


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


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


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


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


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Rethinking Lyme disease treatments

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

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

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

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

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

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

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

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Debbie's success story in dealing with lyme.

Debbie Bassett reminds me of a friend I had in college, also named Debbie, who faced life’s twists and turns with a resiliency and sense of humor that welled up from some eternal energy source.
“At one point, all I could eat was baby food,” laughs Debbie. “I lost 25 pounds.” Neither of these statements are the least bit funny, but somehow throughout our entire conversation I found myself laughing right along with her. Gallows humor: a big relief when you’re dealing with something as serious as Lyme disease.

But it wasn’t this 40-something, mother of two’s ability to find the humor in the situation, so much as her strong intuition and intense need to know, that guided her to ultimately find the Holtorf Medical Center, in Torrance, CA, where she began treatment for Lyme.

The basic trajectory of her story line is familiar to many Lyme patients. Sickness, misdiagnosis, searching, then finding a doctor or medical professional who finally leads to a correct diagnosis and treatment. But treatment is often less of an ending point, and more of a start. I know it’s a terrible thing to say, but sometimes I have envied that people can get a clear diagnosis of cancer, and begin treatment for it, while Lyme patients may suffer for months and years without any definitive diagnosis. On the contrary, Lyme patients are often told they have to get a handle on their stress, take a chill pill, or seek a psychologist’s help for mental trouble.

In Debbie’s case, after landing in the ER twice due to headaches, being told by neurologists that nothing wrong could be found, she was handed subscriptions for Prozac. But she knew something was wrong. She told the doctors she suspected she had an underlying virus that they weren’t locating. It seemed unbelievable to her that “nobody’s taking the time to analyze the situation.”

Frustrated, sick, Debbie wound up in Scripps Hospital in San Diego, where she spent 3 days as doctors examined her, determining what they thought was the problem. They scheduled her for gall bladder surgery. It was then that she experienced an interesting turning point. I won’t tell you the whole story -- listen to her tell it.

Debbie’s warmth, generosity and sweetness is a balm capable of soothing the bruised souls of anybody who has suffered through Lyme. She says it is important to share her story so that other people know they are not alone, and that it is possible to pull through in one piece again, as she is doing. Currently on five different antibiotics, Debbie’s in full throttle on her healing path. Please feel free to contact her, as she wants to give her support to others who are going down the same road, dealing with Lyme. Her email address is:
dbassett@earthlink.net

“It’s not an overnight journey,” she says. But with smart medical attention, patience and a sense of humor, we can heal.

Please join to listen to the interview.


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A Holistic Approach To Treating Lyme


Q. I was diagnosed with Lyme last July (2010) after several neurologists told me I had a motor neuron disease - ALS (Lou Gehrig's Disease).  My family and I were thrilled to find out it was Lyme as at least it wasn't a death sentence.  But after nearly 6 months on IV Rocephin and other antibiotics and many supplements and 5 IVIg treatments to modulate my immune system - I am still not feeling much better.  I do have more energy than before the antibiotics but my speech is poorer, my body twitches when I'm still and I feel a sense of vibration in my hands and feet.  I have some joint pain in my elbow and fingers, but it’s not too bad.

I really love my Lyme doctor she listens and adjust my doses at my monthly visit. I fill out a symptom list every day ranking my symptoms from 1 to 10.  I go weekly to her office for my PICC line to be checked by a nurse and they draw blood at that time to check things.  I feel taken care of -- but I never thought it would take as long as it’s taking.


I had read at some point that you beat Lyme with a more holistic approach - can you elaborate on that for me?  I know there are alternative medicine doctors and I went to one once - and she told me to use certain Essential Oils by Young Living - I used them for a while.

A. Your letter brings to mind that aphorism: What doesn’t kill us makes us stronger. Many of the strongest people I know are dealing with Lyme.

Yes, I take what I consider an integral approach to treating Lyme. An integral approach requires more than just treating with medicines and supplements. It also includes getting regular physical exercise, eating right, tending to your psychological/spiritual needs through a regular practice of meditation, prayer, affirmations (whichever practice suits you best), and finally, seriously considering your network of support including your close loved ones on out to the social systems that are available to you: your clinic, nurse practitioner, doctor, as well as the money you must generate, and/or the insurance forms you must navigate, in order to access all of the above.  

I started my treatment with antibiotics because I felt (and my doctor observed) that I had quickly devolved into a very low-functioning state. Every one of my systems was affected and going haywire. After 6 months of antibiotics, a period that I honestly find very difficult to remember, I came to a crossroads. I had reached a point where I could no longer financially afford to continue on the antibiotics. I was feeling better, but not spectacularly so. My doctor was not enthusiastic about my decision but he sympathized with my dilemma, and going on his advice that something would be better than nothing, I then prescribed myself a treatment consisting of herbal medicines and a continuation of the supplements that he had started me on. I embarked on the beginning of my second phase of treatment with some real moments of fear. However, I felt deep inside that I had no choice but to get well and although I was still unbearably fatigued after a full nights’ sleep and had many other Lyme symptoms that could have depressed me, I never, ever lost the willpower to fight and get well. I didn’t want to die, and I’m stubborn.

As the months wore on, I was finally able to put two sentences together again and resumed my work as a professional writer. I was fortunate in that way. If I’d had to go to work outside my home, I probably wouldn’t have been able to stick with the routines I had developed in order to stay on the wellness path. I required lots of sleep, little or no interaction with people outside my inner circle, long naps mid-morning, daily walks, blankets piled on my lap. I had to remember to take the supplements at their correct doses and times. And most critically, I had to have the luxury of being able to take my time on assignments. If the editors I worked for at that time had been able to see me at my computer, they would have wondered about my frequent pauses to stare at nothing, my complete spaciness and inability to stay on task! If they hadn’t been utterly disgusted by the ugly rashes on my hands and fingers, they definitely would have been put off by the stammers and slur in my speech. Luckily for me, they never knew, they were usually too busy to talk on the phone, and I was somehow always able to meet my deadlines.

I think many of us get to a point in our healing where we look into alternatives because conventional therapies either haven’t worked, they aren’t enough, or they’re simply not affordable or available. I’ve often thought that hey, if there’s something, anything, I can do to speed up this healing process, let me at it.

I’ve also read about the essential oils by Young Living and looked into them a little. At one point, someone gave me several tiny bottles of elixirs that I tried. Alternative doctors, alternative medicines, and holistic or complementary therapies are familiar terms, even to those of us who prefer Western medicine. But we often read about or hear these terms referred to without knowing or really understanding what is meant by them. We’ll explore and define these terms in subsequent posts.

All good wishes to you my friend.
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Readers write about Lyme brain

"Kmart" sent these comments in response to last week's post:

1 - I once lost my truck key on the job (gardener). I had three people (customers), for thirty five minutes, looking all over their house and property for it. I must have checked my pockets thirty times and even flipped out my front pockets like a rabbit. Yes (you all have done this) while just standing in confusion & embarrassment my stomach fluttered & face grew red as I had to suddenly admit that I found my key in my right front pocket while casually just standing there. Oops, my bad. There is still no way to explain lyme brain to others.

2 - Having read through the protocol, how in the heck is someone with stage 3 suppose to remember all that? I believe any attempt (at a protocol) is a good one for fighting Lyme. Seriously, there is no way I could stay on this as I am still looking for my keys!

***

Success stories usually, if not always, follow failure. The classic example is learning to ride a bike. If it took falling over nine or ten times before you finally got the balance thing down, than those nine or ten times were more about succeeding than failing.

Healing from Lyme has been sort of like that for me. Starting with getting a diagnosis, which doctors kept getting wrong. I've talked to people for the success stories who said that they went to more than 30, or in some cases more than 40 different doctors before getting a correct diagnosis!

It still makes me shiver to think about the dermatologist who wouldn't even look me in the eye while he was examining my skin rash. I'd brought in a notebook with questions I had jotted down, because I knew I wouldn't be able to remember them unless I wrote them down. The minute I opened it and read my first question, he stopped making eye contact with me! It felt as though he saw me as some sort of weirdo to protect himself against. I absolutely did not feel like I was in the supportive hands of a healer. Of course, it didn't help that I stuttered terribly whenever I tried to talk. He was one of the docs who had prescribed prednisone for my "excema." He was sure he was right. I was sure I was getting worse, not better. At that time I had no clue that the medicine itself was making my disease spread inside my body and brain, quickly rendering me unable to think, talk or keep my balance while walking.

Lyme brain can definitely be funny in retrospect, but I know it's absolutely terrifying when you've got it.

Whether your stories are humorous or scary (or both!), I invite you to share one of yours here. You can either email me directly: ldrd.support@gmail.com or put it in the comments.

All good wishes for healing to every one of you,
Suzanne


P.S. Kmart, I know what you mean about remembering the protocol. I kept notebooks full of schedules for when to take which antibiotic or supplement, to take it before meals, between, whether to take it with water or juice, or put it under my tongue, and how many drops of this and that, when to increase or decrease...It got to where I was either taking a medicine or writing about having taken it. Having Lyme is hard -- but healing from Lyme can be just as tough!
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Lymelife filmmaker turns pain into art

Actor, writer, producer, editor and composer Steven Martini's latest film is Lymelife. As one reviewer wrote, "Lymelife is a unique take on the dangers of the American Dream."

Steven and his brother Derick learned the craft of filmmaking while making Goat on Fire and Smiling Fish (1999), and wanted to "dig deeper" for their next film. The material they mined for Lymelife is largely autobiographical. Taking place in the late 70s, the story chronicles their childhood in the NE, a first searing adolescent love affair, and the dissolution of their family unit. Scott, 15, begins to see that nothing is quite like he thought it was.

In the story, Scott's girlfriend's father, Charlie, is inflicted with Lyme. In real life, Steven's girlfriend's father had Lyme as well. He watched her family try to deal with illness and found it terrifying. As Steven says, Lyme back then was considered mysterious, even psychosomatic. Sound familiar?

I got a chance to speak with Steven last week. He described the intensity of writing and producing this autobiographical tale. He talks about his creative process and his experience of making the film, and even tells what became of the real life character of Charlie.

Please listen to our conversation by clicking on the Podcast link below.

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"My year in HELL"

It's Friday, and I wanted to share this with you all. One our readers, Kim Jones, gave us permission to post this happy note. If you're sick, take heart and know that there are many, many people who are beating Lyme:

It has been a year since a nasty little tick gave me the disease from HELL. But I am back among the living. And living well. Feeling better than ever! Something I did not think was possible a year ago. Some days were so hopeless and I was too tired to read in bed or walk down my driveway to get the mail let alone work or go out with friends.

I dreaded the full moon and nights of restless sleep and days of endless exhaustion. The joint pain was incredible and I could not think through the brain fog to function in any normal sort of way. I will forever look back on May 2008 as the beginning of my year in HELL.

Never mind the swirl of doctors and pills and tests that we have all gone through and the endless researching and reading to find an answer. I absolutely was consumed with finding a cure - I was not going to let this ruin my life. I was absolutely glued to my computer screen searching every LD site I could find.

Then later, when Under Our Skin came out (I bought an advance copy), I watched it over and over while I cried seemingly endless tears. But I refused to allow this to happen to me. Mine is a story of strength and perseverance and just plain stubbornness on my part. Even from the beginning I made my mind up that this THING was NOT going to get me. I was going to beat it.

And I have beat it. Thanks to self-determination, excellent nutrition, LOTS of exercise, and meditative positive thinking. Also, with support from my husband and an excellent local LPN, the only one in the medical community who would listen and help me with meds and support, and a team of online supporters.

I have WON this battle. I am symptom free now for over 3 months. No meds, no brain fog, no fatigue, no rash, nothing. I really am free of this dreaded disease. I now have my life back - whoooooooppppppeeeee!
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The Lance Armstrong of Lyme disease

Caryn "CJ" Jaffe is pure bottled sunshine, a powerful and amazing model for those of us who are sick and determined to get better. She calls herself the Lance Armstrong of Lyme disease. Although she is "bombarded with Lyme symptoms every day," she's worked hard and prepared to compete in an ironman event on Saturday, November 1. What's the lesson for the rest of us? We can do it too. Maybe not race in an ironman, however, we can find the inner strength to set a big goal and then work to reach it, no matter what obstacles are in our way.

"I found out my bib number is 81 (no idea how I ended up with such a low number...it doesn't mean anything but it's kinda cool!)," she told us. "People can go to ironmanlive.com and search for me by name or bib number on race day, 11/1/08."

"I am starting to get very emotional about being a part of this race," says CJ. "I honestly never thought I could make it back to being this kind of an athlete. It truly is a miracle of sorts. I cannot wait to race. Just to get to that starting line is leaving me speechless. I am excited to see what the journey holds during and afterwards!"

Please follow CJ's race online, and forward this story to anyone you know who could use a shot of inspiration. I recently interviewed CJ for our Lyme Success Stories, so members can also listen to her tell her remarkable story. This little firecracker is also going to make a huge explosion with the book she's writing about her struggles with Lyme disease and her grit and determination in fighting her way back to an active life, one that even Lance Armstrong would be impressed by!

It's no coincidence that many of the people who are beating Lyme are dedicated to regular physical exercise. Ask your Lyme-aware doctor about starting an exercise program that is appropriate for your condition.

Ready...set...get better!
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Going for Gold in spite of Lyme

23-year-old champion archer Mel Clarke of Great Britain was asked what it meant to be preparing for the Summer Paralympic Games in Bejing, which opened Sunday.

"The honor to represent your country at that level, it's incredible. I didn't think I was going to have the opportunity."

Lack of confidence in her athletic ability was not the reason for Clarke's doubt. Rather, it was a tick bite that had resulted in Lyme disease.

In 2003, Clarke was paralyzed and partially blinded by Lyme disease. She was told she'd never shoot the bow again. Since age 11, she has used a wheelchair due to arthritis. A fearless competitor, she rejected the notion of giving up her dream of gold. Instead she worked hard to heal from Lyme's brutal symptoms and recover movement, sight and agility. Three and a half years ago she began training for the 2008 Paralympic Games.

The Summer Paralympics began in Rome in 1960, for athletes with physical, mental or sensory disabilities. They are held in the same host city as the Olympic Games, and run by the same organization. They begin three weeks after the Olympics closing ceremony. "Para" is from a Greek word for "alongside," and is not related to "paralyzed."

Mel Clarke currently holds 20 county records, 10 national able-bodied records and eight world records. In addition to going for the gold in Bejing over the next few weeks, she is also eagerly anticipating competing in her home turf in the London Olympic Games in 2012.
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Marguerite's Lyme story

"It's been a rollercoaster," says Marguerite, who began looking for a Lyme literate doctor when she first contracted the disease many years ago. She had just experienced the death of her second husband. She had two adorable puppies, and was active in church, taking yoga, working and staying physically fit when she discovered she had Lyme disease. Living in the heartland of Lyme in Fairfield, Connecticut, she was bitten more than once.

She got herself to an infectious disease doctor the minute she detected a tick bite, and was given short courses of doxycycline, which she now suspects were not long enough. She even received the controversial Lyme vaccine, which was only available for a brief period of time due to its ineffectiveness.

This is a frustrating and familiar story: Marguerite's Lyme symptoms began as flu-like feelings and migraine headaches. Her severe low back pain and neurological challenges made it very difficult to work, even though her company allowed her to work from home. She developed apnea, insomnia, painful swelling in the joints and more. She's gone to three infectious disease doctors who she says won't even listen to her positive test results for Lyme. Today, she uses patches for pain control, and is actively looking for a Lyme aware doctor to treat her.

We wish you well, Marguerite!

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