Lyme's Hidden Gifts--K. C. Smith: Part 2

At seventeen I fainted at a funeral, and it had nothing to do with the funeral. It was 100+ degrees out, and it was humid. But it is strange to be only seventeen, and fainting in this great big crowd of 80- and 90-year-olds. Amazing Grace will never sound the same again--they were singing that as I was fighting to keep consciousness. What’s worse is that I succeeded. If I ever faint again I won’t fight it. I don’t think it can possibly hurt as bad as that struggle of mind vs. body to hold on and stay standing and control how you go down. You have to just let it go.

I still loved Bocelli’s music, and I was learning to cook Italian. I loved the whole Italian culture now. Before this I had only cooked stuff that came as a mix in a bag. But I learned I was a good cook and that I enjoyed it, despite the pain in my wrists. They would go numb after enough work. The pain would hit the next day or the day after, but it would be numb for a while so it was well worth it.

We were still making soap. I was having allergic reactions to the artificial fragrances we used to make the soap. We had also put a backyard garden together. Most the plants died that year. We aren’t vegetable gardeners, but I did so much shoveling to make that garden, and I went out there to tend to it. I was the only one who did much gardening. I was hoping that growing our food would be my way to change things.

At eighteen I was sick with my second sinus infection in the fall, a couple weeks after my birthday. Mom was on her annual “Let’s change the kitchen around on Thanksgiving week!” kick, and I was too exhausted and out of breath to help out except for the little stuff. I was clearing a bookshelf, and Dr. Doris Rapp’s book Is This Your Child? fell onto the floor. I picked it up and was out of breath, so I sat down and skimmed through. I read the page on yeast allergy. I went to mom and said “Look at this; this is our problem!” I’d been reading Mercola fervently for a year and the answer hadn’t clicked. But the single page of Rapp’s book was the first puzzle piece I could do anything with.

Lyme's Hidden Gifts--K. C. Smith: Part 1

My Lyme symptoms started when I was nine, but I wasn’t diagnosed until I was eighteen. I believe it takes having the wrong internal environment for Lyme to even set up shop, a degree of a weak immune system to begin with. 

At nine I had some lymph nodes in my neck swell up and stay swollen for months. They itched. I couldn’t keep from scratching those lumps under my skin. We went to the pediatrician, and he assured mom it wasn’t cancer and sent us home. I began getting headaches, and was suddenly sensitive to every storm, coming, and going. Mom told me that I must have bad sinuses like she does, along with her sister and her mom. "It's normal; you're just starting into the pain of it a little young."

By the time I was eleven I was having migraine headaches sometimes. We also began making homemade soap with all the artificial, industrial strength fragrances. I was the scent mixer because my whole family knew I smelled everything really well, had good “scent-taste,” and wasn’t at risk of sticking my nose in the oil to smell it. Occasionally it would give me a headache, but not that often. I chugged along, thinking life was normal.

Stymied--Annie

The first time I thought I had Lyme Disease was in September of 2007. My family and I had come home from our final outing to our camp in Tunbridge, Vermont. We had just passed papers, and the new owners let us stay at camp that night since we also went to the Tunbridge Fair. We slept on the floor on air mattresses and I remember waking up with a sore eye. This was not unusual since I had been having eye infections on and off for a couple of years. The day after we got home was Sunday; my eye looked worse. I felt like I was coming down with something. By nightime I felt okay, but my eye was worse and my other eye was starting to turn red too.

On Monday, September 17, my eyes were worse so I made an appointment to see my PCP. She was out of town but I did get a substitute doctor, which was encouraging, since I am not crazy about my PCP.

The doctor wasn't sure, but felt the eye problem was viral since there was no pus. I also discussed the off-and-on bouts of diarrhea I had during the summer months of 2006 and 2007. We though it might be gall bladder related since it didn't have the characteristics of IBS. I went to my optometrist and he thought I had a viral episcleritis infection. He told me to use hot compresses on my eyes. Ironically, he had spent several years fighting Lyme disease.

Happy To Be Living Again--Heather Levine

Looking back, I think I’ve had Lyme my entire life. On and off during my high school days I suffered from major depression and depersonalization, but never knew that was a symptom of Lyme. I am honored to share with other Lymies my story, my experience, the valuable information I discovered on a daily basis, and my recovery. I currently have almost no symptoms and am happy to be living again.

I attribute my success to God, my friends in the Lyme community, and Perry Fields. I want to encourage as many Lymies as possible, and let you know that you are not alone, and we are in this together.

When I was younger my family bounced around between New York City and Connecticut. I went into the woods all the time as a little girl, but I don’t remember ever getting bitten by a tick. I loved the outdoors. The weird part for me was that I had no physical symptoms.

When I was about twelve we finally moved back into New York City. During my teen years I suffered from major depression and anxiety. Everyone in my family felt it was abnormal for a girl of fifteen to be so anxious all the time. I later developed an onset of depersonalization for about a year and then it went away. Depersonalization is really scary. You’re completely detached from the world emotionally and feel as if you are on another planet, or possessed. But the strange part about that--looking back--is that it went away all of a sudden.

It's All In Your Head--Ashley Bouck

I was asked to write my story of Lyme, but I really don't know where to start. Do I start the first time I was bitten by a tick, at age 10? Or do I begin when I first started to get symptoms at age 25? I think I will begin at 25; that will be easier for my Lyme brain to remember. Here’s the short version of a very long story.

One of the weirdest of my symptoms is my total inability to regulate my body heat. It can be freezing outside and I’m sweating, and it can be a tropical day, and I’m freezing. One of the first things I consciously noticed was my body heat dilemma. I vividly remember lying in my bed, when I lived in Spokane, in the middle of summer, freezing. Now, if you’ve never been to Spokane, you know it gets mighty hot there in the summer. It’s a temperate Ponderosa pine desert, for lack of a better description.

On this particular day, it was about zero humidity and about 95 degrees F out. I was lying face down on my bed, with a sheet, two blankets and a comforter over me; my arms pulled in to my chest, and my trusty cat, George, lying on my back. I think he always knew something was wrong; after all, we were two of a kind. He had the feline version of HIV and I had taken care of him for years. My sick kitty was now worried about his sick human, curled perfectly where I needed him to keep me warm. I was shivering, so cold it hurt, in 95 degree weather. I knew something was wrong, really wrong, but according to the doctors, nothing was wrong with me. How can nothing be wrong when I’m freezing and it’s Africa hot out? Preceding the chills were severe hot flashes, lasting hours, and making me so nauseous I would sometimes vomit. I knew if I got hot, the cold would follow. I still get these episodes. I told doctor after doctor that something was wrong, and was brushed off. One even laughed in my face and called all the nurses over to laugh at the 25-year-old going through menopause.

A Laundry List of Symptoms--Kim Trick

Hi, my name is Kim. I’m a 27 year old Christian woman living in New York City with a heart for hurting people and a love of whole, natural, healing foods.

For most of my life I suffered from a laundry list of ever-changing and ever-increasing symptoms that kept me constantly feeling under the weather. I experienced extreme exhaustion, constant muscle and joint pains, chest pain, severe headaches, rashes and hives, chemical sensitivities, frequent sinus, kidney, and bladder infections, digestive issues, anxiety and panic attacks, sleep disturbances, and eventually tremors, drooping eyelids, memory loss, and problems with word recognition, among other symptoms. At best I felt “not so well” and at worst I felt downright miserable.

I spent years trying to find an answer as to why I was feeling so ill all the time. I was diagnosed with food allergies, irritable bowel syndrome, fibromyalgia, Chronic Fatigue Syndrome, arthritis, anxiety, chronic migraines, endometriosis, and several other conditions. It was overwhelming. How could one young girl have all of these issues and still be told “there’s nothing wrong?” I now know these were symptoms of the real illness I was fighting.

After graduating from college, my health began to plummet quickly. I didn’t have health insurance, but I couldn’t afford to stop looking for an answer. Most of the doctors I saw knew something was wrong, but they had no idea what was causing the constantly changing symptoms I was experiencing. I began paying out of pocket for visits and tests, going so far as to pay for an operation in late 2006 to treat a tissue disorder I’d developed from a weakened immune system. All of this added up to major medical bills but no real answers.

In January of 2008 I was finally diagnosed with late stage Lyme Disease and its coinfections Bartonella and Babesiosis, with the possibility of Erlichea hanging around on the side. These systemic and chronic infections were the cause of all my previously unexplained symptoms. Who knew a brush with a cute deer during my days as a kid in rural Ohio could lead to such pain? I quickly learned that Lyme is a tick-borne bacterial infection that, if not caught early, often becomes a systemic and chronic illness attacking multiple organs and eventually working its way into the neurological system. To make matters worse, the medical community is still learning about this disease, and it is often very difficult to diagnose by standard tests. As a result, many people suffer with misdiagnosis and pain for years just as I had. In my case, Lyme was the catalyst that set many of the other imbalances in my health into action and caused me to feel ill for all those years.

Getting my diagnosis of Lyme Disease and the coinfections was one of the greatest things that ever happened to me. I finally knew what kind of opponent I was up against. From early 2008 through early 2010 I channeled most of my time, energy, and resources into overcoming the infections and bringing my body back to health with a fantastic Lyme Literate Medical Doctor (LLMD) and a team of great physicians, physical therapists, friends, and family members.

While it hasn’t always been an easy journey towards health (at times it’s been downright hard, scary, and expensive!), it’s been an incredibly rewarding one. I quickly learned that with a systemic illness like Lyme, beating the infection would only be half the battle. If I didn’t make some big, sweeping changes to make sure that I was eating right, sleeping right, living right, and thinking right, all the medicine in the world couldn’t put me back together again. Working towards wellness meant that I would need to reevaluate my priorities and learn to simplify, slow down, and live with less to value what’s truly important in life, and I’m grateful for these changes in my life.

In January of 2010, after two years of aggressive antibiotic therapy combined with vitamins, supplements, lots of PRAYER, and healthy living, I hit “remission” and am feeling better than I’ve ever felt in my life. I’m incredibly grateful to be where I am today, and I’m excited for what the future holds. I feel like I have a new lease on life, and I want to make this one count for all it’s worth.

Kim Trick, New York

Never Give Up--Carisa Gorak

I’ve had Lyme Disease since I was eighteen years of age. I went undiagnosed until 2007. That is fifteen years of being undiagnosed! I now have Chronic Lyme Disease and I am totally disabled because of this disease and I am 36 years old. I am a mother of three and married to a wonderful man. (He knew I was sick when he married me.) We live in Wabasha, Minnesota. For those of you who do not know where Wabasha is, it is about two hours south of the Twin Cities. (Wabasha is also known for the movies "Grumpy Old Men" and "Grumpier Old Men.")

Most people know me as @MNTwilightMom on Twitter.

The Month of May was Lyme Awareness Month. "Paint May Green." This month is important to so many Lyme sufferers out there. This is how we speak about our illness. We don’t speak out to gain attention or gain sympathy because we don’t want that. Honestly, we don’t want your sympathy; we want to share our stories with you. We want to teach you how to be safe outside. Lyme Disease is REAL! This Disease DOES EXIST. It affects thousands of lives everyday.

We the people who suffer from Lyme Disease love the month of May, because this is the month that we can scream and shout, share the “good” with the “bad.” This is our time!

A Work In Progress--Renee Dahlen

Sometime in 1984 I woke up one morning with an engorged tick attached to my chest. We were living on an acreage in central Minnesota at the time. Our home was surrounded by woods and a meadow--a haven for ticks. But Lyme was not on our radar, so my husband just removed the tick without a second thought. I developed an infection and redness in the area, but we just used alcohol to treat it. Unfortunately, that tick gave me Lyme Disease, and the co-infections Ehrlichia, Bartonella, and Babesiosis. It was one nasty tick. We had no clue that I had Lyme. It went undiagnosed for 23 years.

In 1985 I began to have major symptoms of arthritis, intense pain, and fatigue. I was diagnosed with arthritis of the bone by a rheumatologist and put on anti-inflammatory drugs which I took for a short period of time. I was also put on thyroid medication for autoimmune thyroid disease. At this time I was also having episodes of internal shaking--not tremors--but my whole body shaking and vibrating inside only. It continues as one of my most persistent intense symptoms today, a neurological symptom that is common in Lyme sufferers.

Symptoms of pain, fatigue, weakness, reactions to some foods and certain chemicals, and internal shaking continued to wax and wane in intensity until March of 1991 when I came down with what felt like the flu,which never went away. I was mostly bedridden for 9 months with severe pain, exhaustion, heart symptoms, anxiety, weakness, flu symptoms, pain, stiffness, and more. I saw a local doctor who told my husband Joel that the blood tests proved there was nothing wrong with me--he actually wrote on my chart that I was “a menstruating female” and that was the cause of all my problems. I will not repeat what Joel told him.

The Disease from Hell--Kacy Henry

When I was four years old, my family and I took a camping trip to Arkansas. When I returned home to Louisiana, I had over 50 deer ticks on me. We thought they were freckles at first. I got the bullseye rash, muscle and joint aches, etc., and my parents brought me to my pediatrician. He and his assistant pulled all 50+ ticks off of me with tweezers and sent them off to a medical lab at Texas A and M to be tested for Lyme. The test returned positive, as did the Lyme test they did on me. The doctor refused to treat me for Lyme's Disease, and I never received treatment. After six months, I received about a week's worth of antibiotics for a virus, which seemed to help for a little while, but then things got bad.

At five years old, I wound up in the hospital with viral spinal meningitis. I had never come in contact with anyone with meningitis, and no one I knew became sick with it. Until now, we never knew how I contracted it (Lyme Meningitis). The years following consisted of hundreds of ER visits, infections, viruses, colds, strep, the flu, Strep B in my urine, kidney infections, chronic UTI's, muscle aches, joint aches, migraines, etc.

At six years old, I was seeing a pediatric neurologist for chronic migraines. Whenever I got a migraine, it would last for weeks. Nothing helped. I would take a bath, and then bundle up in a towel and lie on the hard tile floor in complete darkness and try to sleep it away. No child should have to know that kind of pain. A six-year-old child should not know how to say "Pediatric Cardiologist," know what it is, know how nurses insert an IV, and know multiple names of medicines.

Congratulations, You Have Lyme--Lisa Schultz-Hilton

I used to work in healthcare. Since I was little there were two things I was interested in, the paranormal and helping people who were sick. I went to school to be a medical assistant but didn’t like working in the doctor's office. I liked taking care of people long term. But this disease took every dream away from me. Now I feel like a big burden on everyone!

The first time I got sick was at a mall, and my heart started pounding. I felt like I had the flu, and my friend took me to an emergency room. They told me it was a panic attack. Well it never went away. I would go to the emergency room daily, sometimes more than once because of my heart racing or palpitations. My head felt funny and I couldn’t focus. Eventually I didn’t leave the house for three months. I thought I was going crazy. I was hospitalized for a couple of days. My doctor said I was dehydrated and looked sick. Several tests showed nothing, except an ultrasound on my heart showed “possible” mitral prolapse.

In 1992 I moved to a new house but was always restless. I couldn’t handle working. I felt nervous, like something was wrong, but doctors still couldn’t find anything. At this point doctors had me on several meds from Ativan to Prozac. Nothing helped, and most anti-anxiety drugs made me feel even worse.

In 1993 I moved to Arizona and joined a panic disorder group. Heartburn started, really bad. I kept going from doctor to doctor. A charcoal swallowing study showed acid reflux and hiatal hernia. My neck got really stiff. I had a fever and started hallucinating that the room was made of dots. I got big hives up and down my thighs, which lasted for about three months. Doctors gave me steroids and diagnosed me with Desert Valley Fever and later a Black Widow bite. Later tests showed negative for Valley Fever.

A Lot of Life to Live--Kim Christensen

My name is Kim, and I’m a twenty-something, ex-vegetarian, gluten-intolerant, vegetable-loving, creative spirit Lymie living in Minneapolis, Minnesota. I’m a natural health junkie and whole foods, sustainable living devotee. I love to cook, I love to write, I love to share knowledge. I believe in the innate ability of our bodies to heal. I believe in the power of the human spirit. I believe that despite all the sad and nasty stuff going on in this world, there is more beauty and joy than we can ever imagine. And I believe we each have the ability to make choices that ensure health and vibrancy for the future. There’s a lot of life to live, and ultimately we’re each in charge of how we live it.

I was overweight, struggled with persistent acne, eczema, hives, seemingly snowballing food, seasonal, and environmental allergies, constant stomach aches and digestive issues, depression, and nasty, recurring sinus infections. After receiving the first and second Gardasil vaccinations, all these issues seemed to amplify, leaving me debilitated with stomach pain and irregular digestion, suffering rapid weight loss, an absent menstrual cycle, and a host of other symptoms from poor coordination to hair loss, lethargy to vision problems. Since all my blood work, endoscopes, and CT scans came back normal, save some mild esophageal damage from acid reflux, my general practitioner suggested I stop eating acidic foods, and attributed the rest of the symptoms to IBS, stress, my running program, and too much caffeine. She said I was fine. I knew I wasn’t.

As I worked with a naturopath, acupuncturist, and other healing professionals to address Candidiasis, detox from the vaccine, intestinal parasites, heal my gut, and support my whole self, many things improved. I learned how to cook amazing food free of all the allergens that plagued me. I gained back weight, gained back energy, and gained back my sparkle and joy. Health issues I’d had for years – acne, terrible seasonal allergies, eczema – seemed to melt away. But despite so much improvement, I suffered cycles of recurring symptoms regularly. I started developing increasingly severe joint pain, fatigue and headaches. I noticed neurological issues and heart palpitations. I knew something else was still out of balance.

In the summer of 2009, things really started flaring up, and I got more concerned. My cousin had recently been diagnosed with Chronic Lyme Disease, and she expressed concern that my symptoms sounded like Lyme. Frustrated and desperate for answers, I decided to take her advice; I ran a Western Blot test for Lyme Disease through IGeneX, a state of the art testing laboratory for tick-borne illnesses.

A few weeks later, on November 2, 2009, I got my answer. I have Chronic Lyme Disease.

The diagnosis was frustrating, saddening, relieving, and liberating all at once. All those symptoms I had for years actually stemmed from a common issue – a full body infection of B. Burdorferi, the bacteria that causes Lyme Disease. My test results, health history, and symptomology were a perfect fit; I finally had my answer. I knew the road to recovery would be long and hard, but at least I finally knew what I needed to do to recover. I don’t know when I got bit by the fateful tick. It could have happened on so many occasions; my childhood summers were spent in the Northwoods of Wisconsin, at rustic summer camps, and camping and canoeing with my family. I ran through the woods, lay in the grass, and played in the brush. In college and as an adult I still do the same thing. I’ve picked more ticks off my body than I can count; I guess one got past my nightly tick check.

But really, it doesn’t matter when I got bit. All that matters now is what I choose to do with this knowledge.

In a weird way, I’m grateful for this experience. It has taught me to be mindful, be patient, and have faith in the power of positive thinking. It has solidified my belief that natural healing is possible and attainable. I learned to become an advocate for myself, listen to the deep intuition of my body, accept my own limitations, and nurture the hope that lies within. But it has also been the most challenging, most frustrating, most spirit-testing experience I have ever endured. I’ve been scared out of my mind, and I’ve felt more sadness than I thought possible. I have plenty of bad days that crush my spirit, and I have to pick pieces of myself up, dust them off, and put them back together.

Sometimes I feel really sad and angry, and miss things about the life I once knew. But then I remember that while I’ve left a lot behind, I’ve gained more than I could have ever imagined. I’m still here, and stronger and wiser that ever. I know myself better. I live a richer, fuller life. I am grateful for health and life in a way I never fully understood before, and now truly believe that I deserve to be happy and healthy.

Kim Christensen, Minnesota

The Surgeon Said "Oops"--Candice Mitchell: Part 2

I woke up one morning and couldn't move.

I was in so much pain, head to toe, that my whole body was locked in one position. For 45 minutes, I was paralyzed. At this point, I was in a single dorm room by myself, on a raised bed. I couldn't reach my phone so I lay there for a whole 45 minutes until I could manage to move my arm enough to grab it. As I dialed my Mom's number, I tried to stand up, and that's when my heart rate skyrocketed, and the room began to spin. As I tried to explain what was happening without sounding scared, I noticed that my abdomen felt funny. While on the phone, I slowly traveled the mirror, and lifted my shirt to check out what was going on.

I tried not to have a verbal outburst after seeing what I saw. My ribcage on the left side was pushed out about an inch higher than the right side. Turns out my spleen couldn't take it anymore, and it blew up like a balloon. At the time, I really had no clue what a spleen was, or where it was even located, until it popped up and said, "Hello, I'm your spleen, and I'm really pissed off!" You'd think that'd freak me out enough to send me running straight home, but I actually stayed at school like that until the end of the week.

I believe it was three or four days, and things were continuing to get worse, and I could barely stand up. I didn't tell anyone, but I had missed every class scheduled that week. I finally called my Dad, and he rushed over to take me home. I haven't been back since. Upon coming home, I took a trip to the emergency room, where they were absolutely no help, yet again. They told me I probably had a nasty virus and that it had attacked every inch of my body, settling in my spleen. After one week of lying in my parents' bed, unable to walk or barely get to the bathroom, my Mom got me back to the office of the alternative practitioner I'd previously seen. He was rather shocked at the condition of my body, and knew exactly what to test for. This is when I got my first positive blood test. I was diagnosed with Late Stage Lyme Disease.

The Surgeon Said, "Oops"--Candice Mitchell: Part 1

Yesterday afternoon, as I stood in front of the kitchen counter in my mismatched pajamas, pureeing my daily liquid lunch of black beans and brown rice while popping a handful of pills, I paused for a moment. I thought to myself, "How the heck did I get here?" It's a very good question that I'm sure many Lyme patients ask themselves from time to time. Late stage Lyme Disease has a funny way of turning your life upside down in such a way that it becomes barely recognizable. I'd even go as far to say that for some of us, it wreaks such havoc on our bodies that we tend to look in the mirror and wonder, "Who is that?"

You'd think that the life of a chronically ill person would be dull and monotonous, and while sometimes it is, we're also on a journey like no other, and we tend to experience things that some people never experience in their entire lifetime. If you're interested in hearing about just a portion of it, please bear with me while I reveal what it's like to be a late stage Lyme Disease patient, and how it is I actually got where I am today.

Chapter One: The Subtle Beginning

I didn't know it yet, but for me, my journey with Lyme Disease began in the 6th grade. People joked that I should probably consider becoming the next "Bubble Girl," because I started catching just about any infection that blew my way. It actually became rather disturbing, because I began to pick up some off-the-wall illnesses that your average American teen doesn't usually get. I can't tell you how many times I'd been asked "Have you traveled out of the country lately?" When I'd reply over and over again with, "No, I haven't," they'd begin to ask me, "Are you sure?" I almost felt like laughing. "Oh yea, Doc, I totally forgot, I travelled to Japan for some fresh Sushi last Thursday night." Then the digestive issues began, and it was all downhill from there.

Patient #26--Cynthia Ruchti

Doctor Number Seven in the series rolled his vinyl-covered chrome stool so his back rested against the opposite wall of the small exam room. He sighed, slapped his clipboard (they used clipboards in those days) onto his lap and said, “Tell me about your life.”

My life? He’d only heard a smattering of the symptoms that had crept over me—a new one each month for the past year. Heart palpitations that took my breath away. Muscle aches that medicines and massage couldn’t touch. Incessant joint pain. Muscle spasms that flitted from one body part to another with lightning speed. A headache that lasted five months without letting up for even five minutes. Brown-outs (like a black-out, but not fully developed). Vision problems. Low-grade fever. Facial numbness that migrated to my chest and arms and eventually to the soles of my feet.

“My life?”

“Yes. How’s life?”

Putting Up a Front--Ashley van Tol

I grew up in Northern California. I’m not talking about San Francisco. I was four hours north of there in the mountains.

Like any kid who grew up in the woods, I was always outside, I hardly wore shoes, and I wasn’t afraid of getting dirty. Naturally I wasn’t afraid of bugs either. I remember pulling a tick out from behind my ear. I can still see its little legs kicking in protest. With a look of disgust, I threw him on the ground. “Yuck,” was about the only thought I had about the experience. I was maybe 10. I don’t think I got Lyme from that one, he was too big.

I also remember getting spider bites. I never saw the spiders but I would occasionally wake up with a big, round, red ring of a rash around what appeared to be an unaffected patch of skin. Sound familiar? Yeah, well needless to say I am no longer so sure about my self-diagnosis of spider bite.

It is hard to say when I was actually infected with Lyme. I didn’t really start suffering from any symptoms until I was 21. In 1998 it started slowly with my stomach. Honestly it was pretty miserable at times but I just ignored it.