Tuesday, November 30, 2010

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!

Friday, November 26, 2010

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.

We went to Mayo Clinic in July of that same year and the team of doctors I saw gave me conflicting reports. The rheumatologist told me I was extremely sick and to keep seeing a specialist because he felt it was just a matter of time before I would be diagnosed with Lupus. The internal medicine doctor wrote in my report that I had some kind of Chronic Fatigue Syndrome and if I would learn to manage my stress (according to him--my 7 children, foster daughter, and being a pastor’s wife) and get into therapy it would all go away. I went through a battery of tests, but I was never tested for Lyme.

I did go back home and go into therapy because I wanted to make sure I did everything possible to get well. The therapy was helpful, but after several weeks of therapy the therapist told me that I was “really sick” with a physical illness and not to give up trying to find the answer to my health problems. This was my first positive medical affirmation that I had a real disease.

After seeing a chiropractor for several months, I began working with a European trained doctor who practiced as a naturopath. For over 7 years she worked with me using homeopathy, herbs and vitamins, acupuncture, and allergy treatments, bringing my health levels back to about 50%.

Then in 1999 we moved to a beautiful home on the edge of a town in Iowa where the woods were only a few yards away. We had oak trees in our yard, and the deer, mice, and chipmunks loved the acorns. It was nature at its best while still living in town. Unfortunately, it is believed I was re-infected sometime in 2001 by another Lyme tick--more than likely brought in by one of the visitors that enjoyed our yard so much. Shortly after, my health took a nose dive, and I ended up homebound and bedridden a lot of the time. I became reactive to chemicals, wood smoke, molds, and more foods, and after discovering that the foundation of our home was constructed from treated wood which I was reacting to, we made the difficult decision to move from our dream house. We moved to our current home in the fall of 2004 and it is from here that I view life mostly in isolation, from my sofa sanctuary.

I need to add that last year my husband was diagnosed with Lyme Disease also. It is believed he was infected after we moved to our home with all the oak trees where I was re-infected. Not one doctor tested him for Lyme when he became so ill he had to stop working for a period of time. Mayo Clinic diagnosed him with Post-viral Syndrome and Sleep Apnea. He became so sick last year that he had to go on disability. Recently he has been able to work 15-20 hours a week IF he naps 2-4 hours a day and sleeps 8-9 hours at night. Treatment continues for him.

Over the years I saw neurologists, rheumatologists, internal medicine and infectious disease doctors, and cardiologists without much help. My health continued to spiral after my naturopath moved out east. By 2004 rest and isolation were my coping tools, but did not improve my level of function.

In 2006 a friend I had met through a newsletter I published was diagnosed with Lyme Disease. She had been getting treatment for CFS for nearly 20 years and was also homebound and very ill. When the specialist told her she believed she had undiagnosed Lyme, she saw a Lyme specialist in New York who diagnosed her with Lyme. She was sure that I also had Lyme. At first I did not believe her, but she and her husband did not give up on their quest to talk me into being tested. I put it off until March of 2007, when I woke up in the night with what I thought were insect stings all over my body. Thus began my journey with neuropathy--the most challenging symptom I have ever had to deal with. Along with finding air, touch, clothing, and high levels of stress causing burning, stinging, pins and needle feelings all over my body, I had a thirst I could not quench and dropped thirty pounds in a short time. This new medical crisis caused me great distress. With my emotional health at the breaking point I went to my local doctor for help. She told me there was nothing more she could do for me and I would just have to cope with the neuropathy. In hindsight, her response was a good thing. With my friend’s encouragement and my local doctor's dismissal, I shifted gears and began looking for a specialist who could help me.

My friend’s doctor in New York was willing to give me a list of Lyme Literate doctors who were within driving distance, and I ended up going to my current LLMD because she was so close and also treated people for CFS/ME and MCS. I did not expect her to find Lyme, I just desperately wanted help with the neuropathy. In May of 2007 Joel made a bed for me in the back of our van and I rode lying down to her office just three hours away. My first appointment with her took four hours. She examined me, went over all my history, and took 19 vials of blood. We received a thick pile of test results in the mail, and I can remember being shocked as I read my diagnosis: Late Stage Neurological Lyme Disease.

I began treatment in July of 2007. I have been on antibiotics for nearly three years now, and my progress has been a slow walk--a journey that I believe will take a very long time to complete. My hope is that the Lyme will eventually go into remission but due to my inability to take large doses of antibiotics, and my recent journey with Uterine Cancer that caused a huge setback, I know that the battle with Lyme is one I cannot conquer alone. I will continue to do what I can to improve, follow my doctor's advice, and hope for the best. I am practicing surrender on a daily basis, making an effort to live in the moment from my sofa sanctuary. Some days I succeed, others are not so good! I am a work in progress, BUT, no matter where I find myself on any given day, God is in the center of it and I can trust His plan for my life. A great hope-filled quote is, “Today is a new day--another opportunity for a miracle!"

Renee Dahlen, Iowa

Tuesday, November 23, 2010

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.

Friday, November 19, 2010

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.

Tuesday, November 16, 2010

Puddles on the Beach--Cris Edward Johnson

It rains in Maine just like everywhere else, but after a storm, you never see puddles on the beach at Pine Point. Only broken sand dollars.

It’s raining as I sit here on the screened back porch in the dim pre-dawn light. Rain is falling softly on the dunes and the patter of each drop sounds with a distinctive plunk against the cedar shakes of the roof. The music woke me about an hour ago so I made some coffee and came out to enjoy the concert. It’s the first time I’ve been up before dawn in several years. That may not seem surprising, but during that time I’ve been in the middle of a life storm and the water seemed to be rising every day.

I have been battling an elusive disease called Lyme, not knowing that I had it. Not being treated because there was no diagnostic medical test that spotted it. What began as an inconvenient puddle of symptoms rapidly developed into raging river that swept me away. Careful examinations by a team of highly skilled doctors revealed nothing definitive. Thinking that I was dying from some supernatural infirmity--or was going mad--I slipped into despair. Each day I required more and more sleep until, at one point last winter, I was sleeping more than I was awake. Fatigue was my constant state of being. Aches and pain followed me throughout each day. I felt the waters were washing over my head. I was drowning.

Friday, November 12, 2010

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

Tuesday, November 9, 2010

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.

Friday, November 5, 2010

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

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.

Tuesday, November 2, 2010

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?”