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lyme disease symptoms

Finding a Lyme diagnosis: Mystery symptoms

Excerpt from my upcoming eBook.

I wake up and roll out of bed, heading to the loo. But when my feet hit the floor, I gasp at the explosion of pain in my ankle. Leaning against the wall to keep myself from toppling over, I stand panting for a moment. I manage to lurch across the room without putting any weight on my foot.

Sitting on the toilet, ankle throbbing, I break out in an ice cold sweat. My stomach doubles over in cramps. Nausea overwhelms me. Try to think, I tell myself. I recall hearing that intense pain can make you vomit. But what's wrong with my ankle?

The nausea increases but I cannot catch my breath. My lungs will not inflate. There is no oxygen. Losing all muscle control, I slip off the toilet seat, collapsing in a heap on the floor. 

Then I hear Evan’s voice somewhere nearby. It echoes through the tin can of my head. "What is happening to you?"
His face spins in front of me. He looks terrified. 

I might be dying. Right now. And I don't know why. There is no bliss, no white light. No welcoming angels. I am bewildered.

But in the next moment for no apparent reason, the crisis passes. I am able to take a breath. My body temperature begins to normalize. 

Evan helps me up off the floor. I still cannot put weight on my foot. He asks again. What’s happening? What’s wrong with your foot? I understand the questions, but have no answers. I ask how long I've been lying on the floor.

“Five minutes,” he says. 

What? I could have sworn I had limped into the bathroom hours ago. 

As he helps me back to bed, I glance in the mirror in disbelief. A zombie is staring back. My skin looks pale and lifeless, as if my face has been carved out of clay. 

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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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A new year list for healing from Lyme

Setting new goals and dreaming new dreams can happen at any time. In January, though, you can almost feel a collective buzz as so many people set goals and re-evaluate past aims. If you are healing from Lyme, how does goal-setting work?

I can't remember having the consciousness to set many goals when I was really sick. It was enough to remember to take which medicine when. I used to joke that with my Lyme-brain fuzz head, tracking those meds and supplements had become my full-time job. The little notebooks I kept were my external memory drive. I could not have gotten through it without some sort of system.

New goals can seem very big and abstract. A lot of people want to work on changes in their job status, their weight, or aim for a vacation destination or specific financial goal. People dealing with Lyme often feel their world's been shrunken to the size of a thimble though. New goals any bigger than keeping track of your daily routines can be overwhelming. Still, if you're in the mood for taking a bigger picture approach, writing down your desired goals can be really healthy. It can also be healing just to reflect on last year's goals in relation to where you are today. How has your situation changed since last New Year?

Here are two ideas to try, to kickstart your new year of intentions on the healing path.

Make a gratitude list
Perhaps you already do this on a regular basis. If so, good for you. This simple act, done every night before bedtime, can be one of the most transformational things you could ever do for yourself. You can make it as general or detailed as you want, but try to be specific as you write, and really visualize the faces of the people that you're thankful for, or the doctors or nurses, children, parents or friends who showed up at your side during the worst of days. Name them all and send each one a special prayer of thanks as you do.

Name your furry kids, too. Our pets are unconditional givers. My sweet kitty, who was always by my side during my roughest months and years, recently died at age 13. I grieved for her, and also cried tears of gratitude for all the love, affection, and moments of wonder and laughter she gave so naturally throughout her life. Her passing marks a new point in my own healing stage. It was as if she came to be with me especially as I got through Lyme.

Make 12 new monthly goals
You don't have to reach the moon every four weeks. Take baby steps, and you can always adjust your monthly goals as you go along. Last year I decided to give up gluten for awhile and see how it affected me. The first thing I noticed was that there were no more sandwiches in my future. I adjusted that goal a little and things turned out fine for me.

Relinquishment goals such as that can be valuable of course, but include positive goals too. Consider how you might parse the 12 months of this new year. You could go by the seasons, or some other way that strikes you as important. Are your first three months going to focus on getting better treatment or changing doctors? Maybe your second three months could be about integrating a healthier diet and exercise routine into your schedule. One set of three might be focused on personal/cognitive skills such as starting some new brain exercise games, then you might think about making goals around who you'd really like to attract as your mentors and buddies – your healing community.

Whether or not you set goals for the new year, we wish you much love and rigorous good health as you make progress in healing from Lyme.



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Has Lyme changed your mind?

Every New Year's Eve I write down my goals for the New Year. Written lists have an uncanny way of materializing -- perhaps not as soon as we would like, or in the way we imagined, but all in all the act of writing down your goals for the coming year does seem to influence your ability to achieve them.

I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.

My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.

From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.

Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.

The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.

For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:

This year, change your mind.
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Jessica Wojenski, teen on a mission to educate people about Lyme

As reported in the Hollis Brookline Journal, teenager Jessica Wojenski, who recently graduated from New Hampshire's Bedford High School, has struggled to recover from Lyme symptoms severe enough to keep her out of school much of her junior and senior years.

“There’s such a lack of awareness out there about this that unless you scare people into realizing, they’re never going to get it, even though I hate doing that,” Jessica told the reporter.

I know just how she feels, and you probably do as well, if you have suffered with debilitating Lyme symptoms. Jessica is dedicated to raising awareness of the complications the disease can cause. Evidently she did not show symptoms in the early stages, which is a problem that many of us deal with -- not even suspecting Lyme disease as a cause of our painful and disorienting symptoms until the disease has progressed beyond the early stages. Kudos to her, and we hope she continues to find support in her New Hampshire community, which is located in the hot zone for ticks and Lyme infections.

When you are first diagnosed, you can easily be overwhelmed by information about what to do. What will work, what won't? Who should you consult and who can you trust as a reliable resource?

I agree with Jessica, there is not enough awareness of the serious nature of Lyme disease out there. Like her, I contracted Lyme about 5 or 6 years ago, and my painful symptoms and treatment quickly made it impossible for me to live my life in a normal way. Since then, my mission has also been to help educate people about this disease through sharing my interviews with Lyme disease experts and people who are living normal, healthy lives again, post-Lyme.

My life is now back to normal, thankfully, and my hope is that yours will soon be too. This is a good place to start educating yourself and clear up any confusion. Our list of "10 things you need to know about Lyme," is available immediately, when you sign up for our free newsletter.



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What's stressing you?

Stress is believed by many to be a huge contributor of illness. Struggling with Lyme disease symptoms is stressful not only on your physical and mental bodies, but also on your emotions. And to top it off, even your own awareness of the stresses in your life can be a source of anxiety.

I remember when I was told that my Lyme-induced skin rash was nothing but a bad case of eczema. The nurse practitioner I'd gone to for help asked me in-depth questions about my rash, my diet, and my health history. She seemed puzzled that I was not the type who might suffer from eczema. I had never overused antibiotics, my Mediterranean-type diet included fresh greens and did not include sugar or alcohol. I was very much in love with my life-partner and running a small business that satisfied my financial needs, and which gave me time to spend with family and friends.

As I stood to leave, she peered pensively over her glasses at me and tapped her pen against her chin for a second. "You really must do something about whatever is stressing you out so badly," she said.

When I returned a blank look, she threw me a doctorly look and added, "think about it."

On the drive home, I soul-searched, but still couldn't locate a source of stress along the magnitude she was referring to. It wasn't as if I was living in a bubble, I had certainly had my challenges and bumps on the road of life. But at the time, things were going well. As a naturally self-reflective person, I felt a little embarrassed. Out of touch with myself. Was I making myself sick? By the time I pulled into my driveway, I had concluded that there must be something really wrong with me -- mentally and emotionally, not physically.

Months later, when a different doctor had my blood tested at IGeneX and I received a positive diagnosis for the Lyme infection, I felt that odd sense of relief familiar to many people with this disease. The illness, the mysterious symptoms, the long journey to a positive diagnosis, and the diagnosis itself is so hard-fought and hard-won. And finally, the physical and mental stress of treatment itself. It was a little like that old joke about the tombstone engraved with "I TOLD you I was sick!"

If you think stress might be a contributing factor to your illness (or like me, even if you don't), here are 7 things to do to eliminate or reduce tension and anxiety every day.

1. Set strong boundaries.

2. Take time for yourself.

3. Find areas of your life to maintain control.

4. Learn when to say "no, thanks."

5. Surround yourself with supportive and proactive people.

6. Ask for help when you need it.

7. Love yourself.

How do you deal best with the everyday stresses in your life, as you heal from Lyme? Please let me know in the comments. I'd love to hear from you!



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Wake up call: Lyme symptoms return

About six weeks ago I got a nasty wake-up call. My Lyme symptoms began to return. To cut to the chase, I am getting things under control again slowly, but it's been a trial. 
 
Has that ever happened to you? 
 
"It's a rotten deal" to quote my dear old auntie, but it's more than that. I'm trying to keep the perspective that most of all it's a powerful reminder about the importance of staying firmly rooted in my healthy routine. 
 
I forget that I share my body and mind with a bunch of Lyme bugs. When I've got the situation under control, I kill them off slowly and without too much herxing, they don't act out, and I feel good. I can think and talk and walk and work and live and love, just like I was designed to do. The problems start when I forget (as I did six months ago) about the delicate balance I've got going on. Last year I was feeling so incredibly good, so Lyme-free, that I slowly let little things slip. I re-introduced some sugar into my diet. I let myself indulge in a beer now and again -- figuring it's got protein, B vitamins, minerals, magnesium, selenium, iron and it's a stress-buster in reasonable quantities. After all, I rationalized, it was surely not a recipe for disaster, right? 
 
But then, following a few months of slippage, the perfect storm hit. 
 
Literally. Our region was hit by snow-pocalypse in mid-December, leaving us without power for several days. It was cold. I was cold the whole time. We were snowed-in for over three days. My partner was dealing with a health concern of his own, which stressed us both out as we could not get out to get what we needed. In addition, I'd been sick with a flu prior to the storm, so my exercise routine was interrupted. I'd stopped taking a few of my mainstay supplements, and other stuff...you get the picture. When the snow melted and the power came back on I began to make up for lost time (or so I thought) by exercising twice as much, even introducing African dance classes into the mix, which, if you've ever done, is quite the workout! 
 
Anyway, the symptoms have had a hay-day with me, the bugs have been partying, and I'm finally, but ever-so-slowly returning from the brink of a really painful six-week herx. My worst since I was first diagnosed in 2005. 
 
The point is, we each have to determine what the right healing path is for us. For me, the two biggies are keeping up with my supplements and herbal therapies and not slacking on a sane amount of exercise. Also, it's about staying warm, as my body temp runs low, which is typical of people with a Lyme infection. Through trial and error I've also figured out which other things contribute to my personal homeostasis. 
 
And I'm freshly vigilant for the Lyme bugs, who have somehow not quite managed yet to eat my common sense (completely). I'm not going to slip again. 
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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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Video--how to repel ticks

The harvest moon is rising outside my office window at this moment. It's full and bright and lovely. I noticed our neighbor's garden is burgeoning with ripe green peppers and orange squashes that need to be picked and enjoyed. Gardening and me don't exactly fit very well anymore -- not since Lyme revised my priorities. I leave it up to braver folks than I, who aren't as paranoid of tiny ticks. However, I still love the idea of gardening, and I'm always interested in discovering ways to do it safely.

How to Repel Ticks -- powered by eHow.com

This eHow video, posted by a gardener, explains the basics about how to protect yourself and your kids from ticks. She recommends the usual precautions, such as covering up head to toe with multiple layers of clothing. Then she mentions something I hadn't heard before. She suggests that on your hands and face, and any other body parts that aren't covered by clothing, you put on oil.

Her reasoning is that although the ticks are nearly impossible to repel once they've gotten onto your skin, they don't like oil because it causes them to slip, or reduces their success at sinking their sharp teeth into your skin. She says any kind of oil will do -- olive oil, lavender oil, baby oil, etc. She mentions DEET, as well, for its effectiveness as a tick repellent.

She also recommends putting your clothing into a hot dryer as soon as you come in from the garden, woods, forest, or wherever you may have been exposed to ticks. She claims that if you put your clothes into the washing machine, you risk setting them loose in the house. However, the hot temperature of the dryer should kill them.

I think I need to ask Dr Eva Sapi or some of our other Lyme experts about these claims before I believe them wholeheartedly. In our last interview, Dr Sapi told us that the biology graduate students in her University of New Haven Lyme research program couldn't even keep the ticks away using DEET, as they went hiking in the forest for a tick-gathering field trip.

What do you think? Have you ever used this oil trick? Is it effective?
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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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Support while detoxing

With all the talk about Swine Flu, there's an abundance of common sense about how to stay healthy making the rounds on the Internet, such as washing your hands regularly and supporting the immune system. Immune support is as central to keeping the flu bug away as it is in healing from Lyme disease. And one important step in keeping healthy is detoxification. Detox is part of the one-two punch in Lyme management (along with antibiotics) that RN Ginger Savely describes in our experts interview series. But what happens when you try to detox too quickly?

Anyone dealing with Lyme is painfully familiar with stressful "Herxheimer Reactions," which occurs when toxins - Lyme bacteria - in the body die off faster than the organs of elimination can handle. Learning how to manage Herxes is important yet tricky business. Essentially experienced as an increase in symptoms, Herxes can include nausea, headaches, brain fog, vertigo or mood swings, bringing more stress to an already stress-loaded system.

Some experts and patients say the Herx just comes with the territory, that it's unfortunately one of the crummy things that Lyme patients must endure in order to get better. However, others claim that painful Herxes are more likely to occur when the organs of elimination lack sufficient support. For example, Jean Reist, RN, claims that the intensity of a Herx can be reduced and in some cases eliminated altogether. How? By supporting the lymph system, an important part of the immune system and a major player in elimination. The lymph must be maintained in order to carry toxins away from the cells. An act as simple as drinking plenty of water each day and routinely jumping on a mini-trampoline can help move the lymph, and reduce the effects of a Herx.

The organs of elimination include the liver, the bowel, kidneys, skin and lungs. Yes, deep breathing, which is used in meditation and yoga practice, is a way to remove toxins from your lungs, so remember to support your body in healing by taking a deep relaxing breath.
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Memory games

One Lyme symptom I really hate is the word-finding problem. You know how it is. You're talking to a friend and suddenly the word you're looking for seems to have been sucked into a black hole. It's not merely gone -- it's non-existent. Frustrating, huh? The good news is, you can improve your word recall by playing memory games. It doesn't take long, maybe 10 or 20 minutes a day. As with physical exercise, when you're consistent you see improvement.

Wordjuxtapoz.com, lumosity.com and mybraintrainer.com offer different types of memory games, ranging from easy to very difficult. With practice, you can improve your brain processing speed and other cognitive functions. Games are addictive!

You don't have to go online, of course. Take that puzzle-in-a-box down from the shelf, dump out the zillion little pieces on a card table and pull up a chair. Our family always has at least one puzzle going around the holidays. It's a comfortable way to pass a rainy day together. Improving your concentration and recall by focusing on detail is an active, healthy way to participate in your healing journey. And you won't be thinking about Lyme bugs.
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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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Beating Lyme takes courage

Advocating for yourself requires courage. For years I've suspected that chronic Lyme patients have got to be some of the gutsiest people around. After listening to the personal success stories of a number of people who are beating Lyme, it appears that courage is an ingredient they have in common.

For example, Darryl tells about his fierce battle with Lyme symptoms, his struggle to find adequate medical help, and ultimately, his success. As he explains, he makes a living as a professional athlete, racing bikes and working for the studios as a stunt man.

Stunt work is dangerous. These guys and gals deal with a gamut of risky activities, such as faked accidents, explosions, and racing away from the scenes of television crime. It's safe to assume that a stunt guy would have guts.

But imagine the courage it took for Darryl to lose the physical ability to work, to have to begin advocating for himself without any help from friends or family members, to fill out form after form of insurance information. To live alone on disability for a period of three years. And all the while, to endure the intense symptoms that we've all experienced in varying degrees, thanks to this pernicious disease.

Of course, you can easily imagine his situation, because yours is probably not so different from his. You may not be a stunt guy (or gal), but your struggle has undoubtedly been just as difficult.

Are you beating Lyme? I would like to hear--and share--your success story. Write to me here.
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ILADS to train more doctors

As you are probably all too well-aware, we have a desperate need for more Lyme disease specialists. Driving or flying thousands of miles to see a Lyme literate doctor is not a luxury that most of us can afford.

According to this article in MediLexicon, the International Lyme and Associated Diseases Society (ILADS) has started a new training program to teach more doctors how to diagnose and treat chronic Lyme disease. With financial assistance from the New York-based Turn the Corner Foundation, the program aims to train 100 doctors over the next five years.

"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."

Many physicians are not aware of the complexities of tick-borne diseases, and patients with Lyme symptoms are too often misdiagnosed, under treated or simply dismissed. The disease now known in the medical community as the Great Imitator can be a superb mimic of a hundred other conditions, especially if it hasn't been treated correctly when in the early stage. This is due to the complex nature of the Lyme bacteria, which has the capacity to hide from the body's immune system in order to protect itself. Doctors who are trained to recognize and treat Lyme symptoms will help increase awareness of the disease.

The ninth annual ILADS 2008 conference will be held on October 18-19 in San Francisco. Entomologist Willie Burgdorfer, who discovered the Lyme bacteria we know as Borrelia burgdorferi or Bb, is scheduled to be the keynote speaker. Several hundred physicians from across the globe will be in attendance. For Lyme researchers and medical specialists who treat Lyme patients, the conference offers an opportunity to collaborate and learn about each others' work.
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Relief for painful joints

One of the most common Lyme disease symptoms is achey knees, fingers, and other painful joints. If you suffer from rheumatoid arthritis, you may find relief with moxibustion, which you can create with the heat from a lighted, tightly wrapped bunch of dried mugwort. Moxa is mugwort.

Author, Herbalist and acupuncturist Lesley Tierra, whose arthritis massage oil formula I've posted here, says many arthritis sufferers find relief from moxibustion. To use it on your knees or fingers, light one end of the moxa stick by holding it over a candle, or with a lighter. The flame will go out but the stick will still be burning, like hot coal. Hold the cool end and aim the hot end of the moxa over the achey place, close enough to feel the heat. Be careful not to touch the moxa to your skin. I've been using it on my aching knees for about ten minutes at a time, once a day. Sitting quietly for a few minutes and appreciating the soothing warmth flooding my joints has also helped remind me to slow down during a busy work week.

Moxibustion is used in Traditional Chinese Medicine to warm a patient's skin and stimulate qi, the life force. You can obtain a moxibustion bundle from an acupuncturist, which is where I got mine. It's about the same size as a cigar, and while I think it smells a whole lot nicer than most cigars, it does create a fair amount of smoke and incense while burning.

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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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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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Chronic Lyme Disease

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

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

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

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

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

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

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ABC covers Lyme debate - part 2


Watch the video


* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body


Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.

Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.

Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?

Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
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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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Psychology Today on neuroborreliosis

Lyme disease can affect every system in the body, including the brain. So what happens when a doctor you respect tells you that your unbearable pain is all in your head? Read this hair-raising account of one family's journey to hell and back, in the latest issue of Psychology Today. In their story, you're bound to recognize parts of your own.

Read the article in Psychology Today.

Become a member and listen to the experts directly.
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Two approaches to Lyme symptoms

Ginger Savely, RN, FNP, who treats people with Lyme disease symptoms and other tick-borne diseases, says, "I always tell my patients that the approach is from two angles. One is to decrease bacterial load, by giving antibiotics to kill the bacteria. The other is to strengthen the immune system."

Detoxing and boosting the immune system must go hand in hand in the successful alleviation of Lyme disease symptoms. "Because if the immune system isn't functioning very well," says Savely, "you can give a person all the antibiotics in the world, they're not going to be able to fight the infection."

Savely says her approach is realistic, considering the complicated nature of the Lyme bacteria, which has the capacity to hide and evade the body's immune system for an unknown amount of time. The twofold approach can take time and effort, yet she says the hard work eventually pays off. "Hopefully, the bacteria levels decrease to a point, where the newly strengthened immune system can take over and keep the infection at bay," she says.

Become a member and listen to our exclusive audio interview with Ginger Savely and other Lyme specialists.
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Lyme Disease and depression

Depression. It isn't all in your head. Some of the symptoms related to the brain and nervous systems that have been observed in Lyme patients are headache, tremor, facial paralysis (Bell's palsy), tremor, burning or sharp stabbing sensations, numbness, irritability, dementia, and mood swings. Depressing, huh? Yet not all Lyme sufferers experience all these symptoms. Clearly, they are not only related to Lyme; they may also be indicative of another condition. Especially during the holidays, it can be tough to manage the stress brought on by financial pressures, travel, and a busy social calendar.

If you're healing from Lyme, you must slow down and nurture yourself first. Stick your regular routine as much as possible, and cut down on work if you can swing it. Cook nutritious meals, get plenty of sleep if you can, and cultivate a practice of relaxation through gentle Tai Chi, yoga, meditation, or deep breathing. If you're a mom, or accustomed to being the caretaker, it can be difficult to ask for help, but you need to get over that. Recruit help from your family and friends. This is a good time to learn how to ask for assistance when carrying in the grocery bags, making beds, or tidying up for your relatives' visit.

Brain and nervous system involvement is usually a sign of late stage, or what is referred to as chronic Lyme. Get professional medical help if you suspect you may have Lyme, even if you have not tested positive for it. Most of the tests for Lyme disease are notoriously unreliable at this point. If you are unusually depressed, or your mood swings are worsening, and you also have some of the other symptoms associated with the disease, such as crushing fatigue, fever, rash, or arthritis, it is very important to consult a Lyme-literate doctor with experience in recognizing Lyme symptoms.

In the meantime, nurture your spirit as well as your body. Spend time with folks you really love. Rent funny DVDs, look for the humor in your everyday situation. It's there, even in our suffering. Take inspiration from other people who have survived serious diseases and recovered to live happy lives. Above all, during the holidays and beyond, don't let depression get you down! Bear in mind these wise words: This too shall pass.
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Lyme symptom-free

I am finally back to living a normal, Lyme-free life. There were days that I never, EVER thought I'd get here, but it's happening. I'm upright, I'm productive, and I'm getting on with it. I'm relatively symptom-free. Sometimes, like this morning when the birds are singing and I can smell the yummy omelets that my sweetie is cooking in the kitchen, I feel absolutely great. (Or maybe that's the Holy Basil) However, there are no magic bullets. There has never been a day when I woke up and thought, "Hey! I'm all better." Getting over Lyme is not like getting over the flu. It takes time. A lot of time. It's been two and a half years since my diagnosis, and more than three since I began to deal with mysterious symptoms.

A tiny muscle in my left eyelid is twitching, but I'm going to chalk that up to staring at this computer screen.

I took the herbal tinctures from the Amazon for about a year. Dr. Cowden's protocol worked really well for me. Currently, I'm taking a very high quality colloidal silver and a host of other helpful supplements. In October of 2006, I had a month-long herx that manifested as itchy rashes on my shins and ankles. That was always where the worst of the rashes had been, for the two years prior. I kept taking the herbs, but I was nervous that the rash might worsen, so I wasn't increasing the doses like I wanted to. I struggled with the decision to increase the doses and take my chances with more herxes, or just step back and take small amounts until I got over it and felt like I could risk a herx. I didn't increase the doses for about two months, then in about February I started increasing, and I didn't break out or feel Lymie. So I slowly started to increase more and built up to the full dose, then stayed on it until about September.

Since October of 2006 I have had no major breakouts, no problematic rashes, and every day I feel incrementally better. Symptoms, good riddance.
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Diagnosing Lyme Symptoms

Due to its many symptoms and its ability to mimic numerous other illnesses, Lyme disease remains tricky to diagnose. The bull's eye rash, with which the infection is frequently associated, is by no means the only symptom to be aware of. Indeed, only a relatively small percentage of people infected with the bacteria known to cause Lyme ever present with the bull's eye rash. Other symptoms include fatigue, fever, headache, joint pain, a rushing or jumpy heart, and an extreme sensitivity to bright lights, especially florescent lighting. Symptoms do not all appear in all Lyme patients, and they may present at different stages as the disease progresses.

Lyme is a multistage illness, and the first-stage symptoms mentioned above can all be mistaken as signs of another ailment. Joint pain can pass as arthritis, headache may be associated with other triggers such as workplace stress, eye strain, or menstruation. Fatigue is a universal problem, as many people suffer from lack of sleep, and when overcome by tiredness, tend to push themselves beyond a healthy limit with the assistance of caffeine. Because brain fog is primarily caused by a lack of sleep, there are many people who walk around each day trying to function normally while feeling mentally fuzzy. Thus it becomes confusing to discriminate in order to obtain a diagnosis. When is mental confusion, or the inability to make clear decisions, caused by a fatigue, and when is it part of a bacterial infection?

In advanced stages of Lyme, or in cases where the bacteria has affected the brain, called neuroborelliosis, inability to concentrate, memory loss, brain fog, speech problems such as stammering, and hallucinations are all potential symptoms, all of which, again, do not appear in every Lyme sufferer. Hallucinations can be expressed through any of the senses. They do not always manifest as visions. Some people hear voices or sounds which aren't there. Others feel sensations, such as a raging fever, when in actuality their body temperature is normal. Additionally, disorientation or a sudden onset of paranoia can be a symptom of this stage of Lyme disease.

There is no question that speech disorders, severe mental fog, and these other symptoms are upsetting and frightening. Yet once a clear diagnosis has been obtained, a Lyme patient can begin to heal using a multi-branched approach, including whatever is deemed needed by the patient and his or her team of medical support personnel. Painful and often torturous Lyme symptoms can be alleviated with effort and commitment to healing. Many Lyme sufferers eventually find themselves balanced and virtually healed from Lyme, often as a result of using a wide array of healing approaches, including pharmacological antibiotics, herbal and nutritional supplements, physical exercise, and mental and emotional support. Through heroic effort and a will to commit to their own healing, many people who have experienced even the severe and disorienting symptoms of neuroborelliosis have recovered from Lyme disease.
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Autumn leaves and Lyme disease anxiety

A picture arrived in my inbox this morning, my friends' adorable one-and-a-half-year old son playing in a giant pile of freshly fallen leaves. His chubby cheeks are rosy and he's smiling like an imp. But the picture made me itchy and uncomfortable. Immediately, I thought of Erythema migrans, or "bull's eye rash," which is a common symptom of bacterial infection in the early stages of Lyme disease. The rash is caused by the bacteria called Borrelia burgdorferi, the causative agent of Lyme disease. The Bull's eye rash appears as a red, slightly itchy skin rash with a clear, or whitish central area. However, Erythema migrans is not always a symptom present in patients with Lyme disease.

Lyme disease symptoms don't always show up in the form of a rash, although many people believe the bullseye rash is the most common type of symptom. Other symptoms include fever, fatigue, headache, and arthritic pain in the joints. Many people pass off the fatigue and headache as common exhaustion from an overly-busy schedule. The disease is stealthy, not always directly signaling that something's wrong.

Ticks naturally thrive during the warm summer months, but due to warmer weather in the fall and winter, it is still crucial to check for ticks, many of which carry the Lyme disease bug, AKA Borrelia burgdorferi bacterium. In many cases, the evidence suggests that if a tick is found on the body, its removal within 24 hours can prevent it from downloading its toxins into the skin. After a long struggle with Lyme disease and its crushing symptoms, my enjoyment of some of life's simple pleasures has been tainted, such as a picture of a cute little nature imp in a pile of leaves.
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Lyme disease symptoms: Is herxing necessary?

Lyme disease symptoms are also referred to as Herxheimer reactions or herxing. Would you herx if you discovered you didn't need to? This is a question that Jean Reist, R.N., asks her patients to take to heart. Jean, who has treated hundreds of Lyme sufferers through her PA clinic, Journey to Wellness, has discovered that when Lyme patients tend to proper lymph system drainage they don't experience the stress of a herx. Jean discusses her findings in an audio interview as part of the Interviews with Experts series on the LDRD.

Herxheimer reactions, the healing crisis experienced by Lyme sufferers as a result of a die-off of Lyme bacteria, are a major source of stress for Lyme patients. Simply put, the more effective the medicine in killing the spirochetes, the greater the herx. Killing Lyme bacteria is a curious business. Agonizing pain and the recurrence of symptoms is often used as a measure for the dosage. In general the rule is: If you're herxing to a great degree, back off on the medicine. If you're not herxing at all, you may not be taking a high enough dosage. Each patient will react differently to treatment, and with a wide variety of alternative treatments available, it may take some time and experimentation before you find the right dosage.

Proper lymph drainage can facilitate the healing of Lyme disease and help reduce or even eliminate Lyme disease symptoms altogether. At the first sign of a herx, Reist advises, drink copious amounts of water, exercise, and reach for a detoxifying tonic herb such as Burbur or Parsley. Each organ in the body has a lymph "neck," which is where blockage can occur. Therefore, it's very helpful for the patient to work with a health care practitioner who can help you locate the blockage. The next step is to work on unblocking, which can be achieved in a number of ways, Reist says.

You can hear the entire interview as a member, join now and listen.
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On the horns of an abx dilemma.

We know that antibiotics do help Lyme patients heal, although doctors have observed that abx do their best work when people start taking them soon after becoming infected. Many docs are advocating for the use of long-term abx in the case of chronic Lyme. They feel there is no other way to deal with it. No question, antibiotics are the modern miracle medicine, an irrefutable symbol of civilization. But the medical truth is, long-term antibiotics may do more harm than good.

If you're one of those people who never experienced Lyme disease symptoms until the stress of a life-changing event set it off, you may have been given abx long after you caught the bug. Are your chances of healing from Lyme now reduced? What are the alternatives to abx, and why should we give them a chance?

Read entire article here.
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All In Your Head

File this under the heading It's All in Your CDC Study:

This week, researchers for the U.S. Center for Disease Control (CDC) published a study that may go a long way towards validating Lyme disease sufferers who have been dismissed or ignored by their medical doctors. The study states that Lyme disease results in acute long-term disorders, or as authors Jill A. Livengood and Robert D. Gilmore Jr. write: “...the organism is able to evade the host’s immune defenses and mobilize to various host tissues eventually resulting in arthritis, carditis, and neurological manifestations."

While this study may impact physicians' attitudes toward patients (let's hope it's a positive impact), it can't undo the damage done to myriads of Lyme sufferers over the years whose doctors have hovered in their examining rooms with one hand on the doorknob, rolled their eyes and muttered, “it's all in your head.”

Thank you, Livengood and Gilmore.
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