Friday, December 31, 2010

Be Your Own Advodate--Angela Coulombe

In August of 2007 I had just completed three things on my life’s “to-do list."

1. Kick through a solid 1/2″ piece of pine to obtain my brown belt in Tae Kwon Do

2. Appear on stage in a solo dance performance

3. Run the Beach to Beacon, a 10k race (which I had completed in 54:51.8 wah-hey!)

On top of a full-time job and raising two boys, I’ve always been a bit of an athlete; as a child I did gymnastics, tennis, dance, any sport going. As an adult, I ran, went to gym regularly, attended dance class and participated in TKD three times a week. I’d always been physically fit, cherishing this as my link to sanity and well being.

First Signs of Lyme Disease

The day after completing the Beach to Beacon, Aug. 4th, 2007, the area surrounding my right knee started swelling. Having injured my right knee several years earlier in another running incident, I thought, “No big deal. With a couple weeks of OT and rest, I’ll be fine.” I started therapy but after three weeks the swelling hadn’t gone down. During this time, I also started to notice that my shoulder joints were becoming sore, and it was difficult to sleep on either side due to the shoulder pain.

The OT’s were baffled as to why the swelling in my knee, now very noticeable even through trousers, wasn’t getting better. They scheduled an MRI. The pain in my leg fluctuated from highly uncomfortable to completely unbearable. I had been on Aleve and ibuprofen for weeks without it touching the pain or swelling, and I hoped the MRI would finally pinpoint the problem.

Tuesday, December 28, 2010

Living on Prayer and Team Work--Jessica Sundeen

My name is Jessica Sundeen. I am 29 years old and a single mom of three wonderful children. I've been suffering from Lyme Disease and Bartonella for almost nine years.

I was finally diagnosed in September 2007 after seeing numerous doctors, neurologists, chiropractors, physical and massage therapists, and several E.R. visits. Through all of these consultations, I was prescribed numerous medications that were harmful and unnecessary, and was diagnosed with many disorders that were not valid.

I moved to Grand Rapids in August '07, and I couldn't bear the symptoms anymore. I couldn't get out of bed. I couldn't get on the floor to change my son's diaper. I knew I had to take care of my children, so I worked full-time as a Pharmacy Technician. I finally got the answer to my problems in September, though I didn't know what the future was going to be like. I thought I could just take the antibiotics and be cured. I was wrong.

 The last years have been a nightmare. I'm still scared of the unknown. I've had numerous doctor visits, spinal taps, blood patches, blood work, brain images, trips to the E.R. and operating room, hospitalizations, PIC lines and Hickman ports. I've had comas, stroke, dementia, terrible fatigue, seizures, tremors, heart palpitations, Bell's Palsy, joint pain, muscle pain, tremors, migraines, elevated temperature, neck pain, back pain, tingling, numbness, stabbing pains, anxiety, buzzing in my ears, vertigo, ear pain, and fainting.

I have difficulty thinking, and issues with absorbing new information. I get lost all the time. I have word block and mood swings. It hurts to sleep. My liver, kidneys, and bladder shut down, and my lungs are depleted. I've been through the removal of my gall bladder, and I've been through malpractice. I have sensitive skin, broken capillaries, inflammation and nausea. I take two IVs a day and around 25 medications a day. In March of 2010 I was back in a wheel chair. My kidneys, liver and GI tract aren't doing well. We changed ABX IVs and other oral meds and and it's taking everything out of me. These are all the things I go through because of getting bitten by a deer tick.

I have been denied treatment by Duluth, Mayo, and other hospitals and clinics. I've had four doctors quit on me because they knew they couldn't help the stage of Lyme I have. For treatment I travel 900 miles round trip to see a Lyme Literate Doctor who can help me.

That has given me hope.

I never thought I would make it this far. What keeps me here each day is the power of prayer, keeping the Lord with me, looking at my children, being stubborn, determined and strong, and having a wonderful support system.

Unfortunatly, in March of 2010, my 8-year-old daughter Jaiden was diagnosed with Lyme. I'm thankful that because of my knowledge of Lyme I argued with the doctor to get her tested through IGeneX, and that I know she has Lyme. He said, "It's most likely growing pains." Well, I proved him wrong. He is a wonderful pediatrician, but that goes to show you that the medical field has little knowledge of this disease. She will be doing ABX for an estimate of one year. She's been herxing and having a hard time. She's in lots of pain, but she's a tough girl.

In March I was put into a wheel chair due to my organs shutting down, tremors, seizures, passing out, weakness, and pain.

I'm thankful that my 10, 8, and 4-year-old understand and work as a team for our family to get through each day. We live on prayer and team work, and live each day like it's the last.

I'm now working very part time as an end of life nurse. I have deep compassion for my patients. Because I've been mistreated many times by medical personnel, I give my patients the love, listening, and understanding they need. My patients and their families tell me I'm a favorite!

Please keep my children and me in your prayers. I'm sharing my story not to get pity but to raise awareness. God bless you and your families.

Jessica Sundeen, Minnesota

Friday, December 24, 2010

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.

Tuesday, December 21, 2010

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.

Abdominal pain was a regular thing. I never considered it a problem, just said, “Ow.” Like most kids I was told, “Stop whining.” If your parents don’t think a heartbeat of it, it mustn’t be a problem--right? I was becoming resistant to the Aleve that the pediatrician had told me to take whenever I got a headache. Aleve was the only thing that used to touch it. Tylenol and Ibuprofen didn’t do a thing, and pre-adolescents can't take aspirin. Those headaches were common. I remember crying because they were so bad. The sounds of electronics invariably set them off. As a kid I hated talking on the cell phone, and had no reason that I knew of! I remember always being cold. I was so cold on some days that I would wear sweaters in the middle of summer.

I remember how my first menstrual cycle went. When I think of it now, I see the Lyme and hormonal extremes. For two or three weeks before it I felt AWFUL. It was summer, and I was lying on the sofa. Then, the day I had my first cycle, I felt good. I cleaned the whole house and organized a bookshelf. Mom was amazed. Then I had to use the bathroom and learned--as some would put it--that I was a woman.

Within an hour the cramping began. I don’t remember how long that lasted, but it was as if the pain inside was a rope trying to pull me to the floor. My cycles were pretty regular for several years. But the pain in my pelvic area, at any time of the month-–it did not correlate with ovulation–-would be like someone stabbed me with a knife; it would tear and be so sudden that I would go to the floor sometimes, as if I had been pulled down. It wasn’t the same as the summer diarrhea pain I got. That was something I also grew accustomed to.

When I was about thirteen I started going into my room and having a crying spell for fifteen minutes every single day for at least year. It was just to cry--I don’t remember any good reason. I got sick of my crying and dried it up after a year. I said to myself, “If I don’t have a reason to be crying, then it’s wrong for me to be having pity-parties.” Maybe that was depression. I remember having nights that I couldn’t sleep, but thankfully this wasn’t too often. My dreams were always tense, with strange nervewracking twists in the story. All I heard was that this was the nature of dreaming. I often startled awake in chills, and an inch off my bed, when I dreamed I had slipped off the steps. This dream continued until I was nineteen, and I still have it occasionally.

When I was fifteen or sixteen I basically slept through the entire winter. I remember trying to sit down to read something, or listen to some audio program, and next thing I knew I had been asleep for hours. I wore three layers of clothes and was under two heavy afghans and was still cold all winter long. That was the year I didn’t play out in the cold at all.

Thankfully I don’t remember too much awful stuff, but I don’t remember much at all. I just remember that we were listening to the Audiobook of C.S. Lewis’ Screwtape Letters. Needless to say this produced some horrifying dreams. When I was awake I would be warmer after having slept, and I didn’t really want to go back to sleep. But I would inevitably drift off again. I did have spells of needing to run up and down the stairs--yes run--but it was at strange hours like 11 pm, 1 am, 3 am. It happened only a few times when the sun was shining.

At fifteen, I thought it was completely normal to live five days out of seven with a migraine headache--light, smell, and sound sensitive. It would make me throw up about once a week. Every time I stood up I had to catch my balance because I would get lightheaded and my vision and hearing would fizzle most of the way out and then come back.

By this time I was nicknamed “super-ears” by my brothers who wanted to play video games or watch a little TV while my migraines would make me vomit. I’d be screaming for them to turn off the TV, and it was downstairs and across the house, on volume 1. I was told I was being oversensitive and to be nicer to people. I just shut up, but still would fuss sometimes. I didn’t feel good enough to scream too much.

I could drown the world out with classical music, and I could play my flute. Actually, holding the flute relieved my wrist, but the need for breath was a slight challenge until I had a good enough diaphragm to compensate for the lightheadedness. Then I discovered opera, and Andrea Bocelli! I listened to his music constantly-–it was definitely obsessive.

Aleve did me no good for the pain, anywhere. I didn’t really complain about anything but my wrist and my head. Somedays I would lie in bed and feel as if someone had beaten my head against a brick wall, smearing it against the brick, trying to grind to the bone. If I wasn’t just about to vomit, only Andrea Bocelli’s singing could ease my pain. If I was going to vomit I was in for several hours of pure misery, knowing relief would only come after losing my lunch. I did an awful lot of writing on his forum back then. I didn’t know why it touched me so much. I thought my level of pain was something everyone dealt with. If mine was normal, I didn’t know how others survived “real” pain. But that was something I just “knew” and never thought about.

I was so sensitive to hurricanes that if they were 600-800 miles away I invariably lost my voice. The sinus pain was extreme--those days of lying in bed, feeling like I was being tortured by the mafia. (Now I know it was some secretly renowned Nazi scientist who was inadvertently torturing me. See Lab 257. Ha ha.) I couldn’t wait for the hurricane to get here so I could feel the relief. I remember waking up and telling mom “Katrina just went from a 3 to a 5--I promise you!” It felt so horrible. She checked the radar and the news, and everyone was talking about how strange it was that Katrina had gone from 3-5 overnight. I knew it! It was miserable. What’s horrible is that the pain let up some when she hit land. Made me feel kind of guilty, but oh the relief!

I still managed to get my schoolwork done; it was a kind of distraction. I always have been very study-driven. I also delved into studying Italian. I wanted to understand the beautiful language that I had begun singing along with.

Thanks to the sinus issues and using my diaphragm for playing flute, I was sixteen and could sing not just a decent alto, but sing right along in Bocelli’s voice range. I wanted to sing soprano but heard the tinny quality of my voice and couldn’t stand it. My brothers got sick of it too. They told me to sing in Bocelli’s octave, for everyone’s sake. I would spend time in my room a lot. On some days I could zone out of all the noise that was killing me, or overwhelm it with my music. Other days I would watch something on TV with mom.

We got wrist braces at Wal-mart for my right wrist. It would swell at random times, and I'd be in such pain. Both wrists were too weak for me to open a container on my own. I thought that was normal too; after all I was the only girl in the family. No muscle sister to compete with. Despite all this I took drivers' ed and did decently well. OUCH on the wrists! This was also the year I got interested in health. Surprisingly, that is all thanks to my now-LLMD. He came up to our church and gave a lecture on how to stay healthy. I took six pages of notes for a 45-minute lecture! I’m in college now and to date haven’t taken notes that extensive. I began reading health stuff like crazy and I wanted to change our diet, but my family wasn’t for it. It was “too expensive” to change. But the time would come.

At seventeen, I fainted at a funeral...

Part 2 Friday.

Friday, December 17, 2010


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.

That night I got ready for bed and noticed my right heel was sore as if I banged it or something. By next morning both my heels hurt. Throughout the day things went from bad to worse as the pain spread thoughout my feet and toes, up my leg to my knees. My ankles were very swollen and felt sprained. I also had a weird rash and bright red skin covering the tops of my feet.

By the next day there were splotches of red on my legs and they hurt to the touch. My elbows were now sore too. The soles of my feet had red blotches and my toes looked like sausages that were ready to burst. I could not walk; my feet were in excruciating pain. I did not feel sick like I had a cold or flu. I went back to the doctor. He didn't know what to make of it and had me tested for ANA and Sed, rate thinking I may have Rheumatoid Arthritis or Reactive Arthritis. Also while I was there my feet turned dark blue, exhibiting Reynauds which I never had before. My blood pressure was extremely low.

I was scheduled for an abdominal ultrasound. I needed something for the pain so I could function, and ibuprofin was out of the question. I had taken so much of it earlier in the year for a ruptured lumbar disk that it now made me sick. We decided to try Celebrex. I found that although it took a while to work it did make it much easier for me to walk and I could function for at least half the day.

The next day, Sept 19, my feet were even worse. On the side of my left foot was a semicircle rash that to me (and no one else) looked like half a bullseye. There was no sign of a tick or a tick bite but I really felt as if I had come down with something strange like Lyme disease. Although I had small red rashes on both legs this was the only rash that was itchy. I took photos of it. I noticed that for the first 3-4 hours of the day my feet were in excruciating pain but not quite as bad as the day progressed. This became the standard for me. When the Celebrex kicked in I got dramatic relief.

The next Monday, Sept 24, I had my ultrasound and went back to the doctor. I know I had more rashes and symptoms. My bloodwork had come back normal but he had me get more bloodwork and a Lyme test. As little as I knew about Lyme at that point, I knew the test was worthless. He gave me a three week prescription for Doxyclyclene and told me regardless of the test, if it were him, he would start the abx. I started the Doxy that night.

The next morning I noticed my arches hurt more and the base of my toes hurt.

The next day my feet were so swollen I could only wear slippers. I went back to the doctor and he told me my bloodwork was still normal. He was stymied and offered me prednisone which I declined since I go psycho on it.

Friday my blood tests came back normal. My ultrasound showed a normal gallbladder but enlarged ureters on my kidneys.

By Sept 29 my feet weren't as swollen or sore but I felt exhausted and mildly flu-ish. The next day my eye started to get red again. My eye doctor thought it was episcleritis again. I had an existing appointment with my dermatologist for an eyelid problem from the previous year, and he looked at my feet and what was left of the rashes. He said that he did not think it was Lyme but just in case, I should have an extra week of abx. He gave me samples of Doryx which is timed-release Doxy. By then the Doxy had been causing nausea so the Doryx was a welcome change.

I called my Cranial Osteopath's office to find out if there was a Lyme doctor less than an hour and a half away. Much to my surprise and delight I found out my Osteopath was also a Lyme doctor. I already had my monthly appointment coming up. When he saw me he said he couldn't confirm or deny Lyme in me as nothing was really typical. He gave me the IGeneX lab kit which I brought to Labcorp. On the evening of October 31st he called me to tell me I tested "very positive" for Lyme--even CDC positive.

He started me back on Doxy from the local CVS but with a mail-in to Medco for three months of double dose Doryx. Medco gave me a hard time but my LLDO spoke with them by phone and I was eventually able to get the Doryx. The Doxy was making me so sick to my stomach I almost couldn't keep it down. It made me salivate so strongly that I had to stay by a sink.

Prior to September 2007 there had been major stress and traumas dating back to May of 2006. On that Mother's day there was a flood of biblical proportions in my neighborhood. My neighborhood is surrounded by an oxbow lake. The last major flood had been in 1987 but this one was much worse. The main road that connected the neighborhood to the rest of town was under twelve feet of water. Twelve of my neighbors had homes flooded but mine remained dry as I live on the highest point. We had to evacuate as electricity and water were cut off. We stayed in a hotel from Sunday through Thursday when the water had receded enough for utilities to be turned back on.

Thursday night I experienced a weird visual disturbance in my right eye. My eye doctor referred me to a retina specialist and I was told I had a detached vitreous. Around this time I started having problems with my eyelids flaking and peeling and my eyes kept getting minor infections. I also started having bouts of diarrhea that didn't correlate to my diet. The diarrhea calmed down by winter but in January of 2007 my L5-S1 disc ruptured and a large chunk landed on a nerve root. It left me with a gimpy left leg and pins and needles in my left foot. In February an MRI confimed that I had bulging and herniated discs as well as spondyliosis of the L5 vertebra.

I was put on a Medrol dosepak which is a six-day prednisone pack. Two weeks after taking the prednisone my right eyelid swelled up so badly that my eye was almost shut. After making the rounds of several doctors, my dermatologist diagnosed eczema and prescribed a very mild cortisone ointment to put on my eyelids. This seemed to do the trick and my lids stopped flaking and swelling. I had my back surgery two weeks later in March where the chunk of disc was removed, the herniated disc material was removed, and the side of my L5 vertebra was shaved as it had been pressing on a nerve for 30-40 years. According to the surgery report, a hefty dose of prednisone was applied to the area before closing me up.

In mid-April we had another flood that was not quite as bad as the one in 2006 but still bad. The access road was under eight feet of water. We could not evacuate and remained at home for four days until the water receded.

June 2007 was traumatic as my Dad had to have emergency brain surgery and died five days later. A few weeks after that my sister was visiting from New York. Whenever she visited we put our cats in the cellar because she had a rescued Pit Bull who always wanted to eat cats. This arrangement worked successfully for eight years. Only this time my husband accidently opened the cellar door and my cat Ben came upstairs. In less than a second the dog was across the house trying to eat my cat. Somehow the cat was saved but was in terrible shape. After countless emergency hospital visits Ben's hind leg was amputated and he started to mend fast after that. A few weeks later we went to Tunbridge for the last time to pass papers on the camp. Although I didn't want to sell it, I knew neither my husband nor I could keep up with the maintenance on it.

In retrospect, I believe that the current Lyme infection really started during the 2006 Mother's Day floods. The ensuing traumas and prednisone doses probably encouraged the Lyme to multiply until I had full-blown disseminated Lyme Disease.

I also believe I may have had tick-borne illnesses dating back to 1991 when we had an abundance of ticks that spring. I found attached dog ticks on both my daughters and me. My PCP told me not to worry since they weren't Deer ticks. Within a year I was diagnosed with Fibromyalgia. In Septmember of 1998 I came down with a strange virus after a weekend at our camp. I had a very sore throat and a fever of 104, which was high for me. A few weeks after the virus went away I started having weird symptoms. My resting heart rate was 150 and I just didn't feel right. I was dizzy or lightheaded, my eyes hurt and I had unbelievable heart palpitations.

I was diagnosed with subacute thyroiditis but my PCP didn't want to do anything about it even though I was severely hyperthyroid. I finally went to an endocrinologist but by then I was hypothyroid and had to go on thyroid medication. A few months later I developed tinnitis. Between 1992 and 2005 I had many episodes of neck spasms. I have had lower back problems for most of my life so I can never be sure if my back pain is anatomical or caused by Lyme Disease.

Annie, New Hampshire

Friday, December 10, 2010

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.

Later I attended college in Pennsylvania. I struggled with some bad times of severe depression, but like most Lymies I was bounced around from therapist to therapist. Seeing a therapist actually became a normal occurrence for me. I attributed it to being from Manhattan. Seems like everyone in New York has a lawyer and a therapist!

I think my life took a turn for the worse when I started law school. It wasn’t so much the curriculum, but the stress. I was living in Miami at the time, and doctors were baffled by my symptoms. I remember getting really bad headaches. I once passed out in a car dealership. I was holding my head and asking to be rushed to a hospital. As usual the tests came out fine.

They put me on all sorts of medicine for my headaches and depression. Later, towards the end of law school, my symptoms got really bad. I remember overnight the severe depression turning into immense anxiety. It was horrendous. I walked into work and I knew something was wrong. I was scared of people; sounds became too loud and knew I had to take some time off work.

That time off was horrible. My anxiety got worse and worse. I started staying in my house for weeks on end. Weeks turned into months. I ordered several tapes from Lucinda Basset and walked around the city saying to myself, “I am fine,” “I am good,” “I am special,” but that didn’t work. I knew how hard it would be to get out of this. That summer I tried to take the bar exam but I was so anxiety-ridden that I couldn’t even leave the house. I soon became addicted to Xanax, and my doctor prescribed it like it was candy. I needed it every second. I couldn’t live without it. Later that summer, my anxiety turned into depersonalization. I wasn’t sure if the depersonalization was a way my body protected itself from immense anxiety, but I knew I needed help.

I struggled with addiction to Xanax and knew I couldn’t be alone. I didn’t trust myself and what I was going through. Life became completely unmanageable. I walked around the city feeling like I was in a dimension beyond this dimension. I couldn’t feel anything and I was emotionally numb. The world as I knew it was gone. I felt like I was away from the world, in another dimension, and couldn’t go back.

Soon my depersonalization turned into derealization. This was more of a visual problem. Again, doctor after doctor kept giving me pills and said that I was just depressed. I went to the top psychiatrist saying, “Please help me, I can’t feel anything. Doctor, I can’t even feel this chair.” He gave me pills and told me it would get better if I just started dating. I stared at the pills, and later because of my addiction I knew I had to flush them down the toilet. There had to be another way. After much prayer, God put an angel in my life. She said it sounded like I had Lyme. I kept telling her that I felt like I was “high” all the time--almost like I just smoked marijuana or was drunk, and I hated drugs. I was such a lightweight in college. I just wanted to be back in the world. “Please God, please help me.” Later that year I had a Lyme test and it came out positive.

I took a test that showed how damaged my cognitive skills were. I couldn’t add or subtract numbers anymore. I thought this was crazy because I was a math geek in college! I cried during that entire session when the doctor asked me questions. I think I even stopped the test because my heart was so broken. What was I to do? Here I was, having graduated law school, and I couldn’t even read or add simple math. It was devastating. How was I going to pay back loans? That walk back to my friend’s apartment/couch was the longest walk home. I walked through the park and looked around at all the Manhattan mothers playing with their children. Was I even living? I sat on a bench with my head in my hands and sobbed. This was a normal day in my "groundhog's day" life.

On July 1, 2009, I sat in the doctor’s office getting my antibiotics, and I started telling the doctor I was relapsing again. I told him about horrible brain fog, derealization, heart palpitations, hotness in the back of my neck, hot and cold sweats, tingling in my hands and feet, migraines and exhaustion. He said this was normal, and then the nurses came into the room to take my blood. They were laughing and talking about what they were going to do for July 4th.

Tears welled up because I couldn't remember the last time I went out with friends or had a life, for that matter. They were also laughing at me because my veins were too small and it was hard to inject me with a needle.

That drive home from the doctor's office was the worst day of my life. The words from my doctor that “I might have this for the rest of my life” made me want to drive my car off the road. If he knew how I felt he wouldn’t want to live either. Thankfully, I was able to drive that day because my family was tired of taking me to doctors, and tired of my being sick.

A couple of weeks later was my birthday. I was broke--really broke. I knew it would take a lot of money to get me out of this. I sat in my room alone on my birthday, with no friends. Just me and a candle. I sat there holding the candle, praying to God to give me money for treatments, to give me hope, and to be there for me through all this.

After I blew out the candle, I ran to my computer and bought myself my first birthday gift, an infrared sauna from Promolife. It was perfect because it rolls up like a blanket, and here I was sitting on my friend's couch. As I clicked the button to pay, I had one eye open and was shaking. "Okay I can do this. I’ll just pay it off when I’m better." It’s funny, but I have been saying this with each treatment, and have actually been able to pay it off six months later! The power of God is amazing!

That day I knew I had no choice but to seek help and get on the right track. I started talking to Perry Fields and seeing alternative healers. Going off antibiotics was scary for me. I won’t lie. It wasn’t an easy task, but I just said, “I’m dying anyway. What difference does it make? Let me try this for six months.”

Every day for six months now I have pretty much been my own doctor. I get up and have a routine. Routines are SO important with this. It was important for me to just keep going. Even though some days I had setbacks, I prayed that what I was doing was right for my body.

Every day for the past seven months I've taken vitamins in the morning, minerals and aloe. I incorporated vitamin C IV drips, ozone water (sometimes I would drink this with my vitamins), Biofeedback machines, Salt C protocol and many others, including a parasite cleanse.

I can’t believe I'm living again. I have dreamed of this for four years. Lyme has manifested itself in me in some pretty weird ways, but I know everything happens for a reason. It’s strange, but I almost don’t want to take back my Lyme. I’m so grateful today, and hope my story will bring hope to people when life seems hopeless. My dream is to have a rehabilitation center for people with Lyme, to open up a spa or rehabilitation center--a place for Lymies to call home. It was everything I wanted when I was sick and alone and my family couldn’t understand this disease at all.

I found comfort during those bad days by talking to other Lymies. I’m crying as I write this because it was so awful. Please remember no matter how bad it gets, there IS hope. You guys are my family. You have saved me, and I wouldn’t be here today without the help from the Lyme community. God Bless You all!

Heather Levine, California

Tuesday, December 7, 2010

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.

Friday, December 3, 2010

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.

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?”

Friday, October 29, 2010

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.
In 2000 I moved with my now husband to New Zealand. When we got off the plane I was in bad shape. It felt like someone had stuck a big wooden spoon into me and proceeded to stir my innards. “Is this what jet lag was?” I wondered.

It quickly got worse. Besides the unbearable pain in my stomach I started having major breathing problems. I just felt like I wasn’t getting enough air. I also had trouble swallowing. The doctor gave me an inhaler for asthma. Ah, it didn’t help.

Life continued on with me in a constant state of panic. What was wrong with me? My boyfriend’s advice--“Harden up Ash.” How very Australian of him.

On a trip to Germany in 2001 my boyfriend declared that the whole city of Munchen stank. Everywhere we went there was a foul smell. I was too embarrassed to tell him it wasn’t the city. Thankful though, that he didn’t realize it was me.

In 2002 we departed another plane, back in the USA. I was bad. Everything I ate or drank seemed to have an adverse effect on me. Mentally I was struggling too. At this point I thought the doctors were right. I was nuts, totally off my rocker. Lock me up and throw away the key!

My family blamed my fiance. My fiance blamed American food. I was pretty sure I was going to die soon. The latest doctor gave me drugs for IBS and acid reflux. Whatever.

I went to the doctors 13 times between January and March of 2003. Lots of drugs and no real answers.

At our engagement party in April, the guests must have thought I was on illegal drugs. I couldn’t even answer simple questions. I remember my mom encouraging me, as if I were a five-year-old, to answer for myself.

Another plane back to OZ and NZ. I was sick of it all now, and determined to figure this out for myself.

My self diagnosis--Candida.

I found a naturopath to help. She confirmed the candida and tested for parasites. I had a lot. She also did a food allergy test. I took all this information and put myself on a diet protocol. No gluten, no dairy, no sugar, no alcohol, and no meat other than seafood. My wonderful husband conformed as well.

At this point I had added depression and fibromyalgia-type pains in my legs to my symptoms. Enough was enough. My new protocol also included exercise. I started with walking 20 minutes a day.

Six months later I was still on the diet, running three miles four times a week and actually feeling healthy.

I felt pretty good in 2004 and 2005. I had ups and downs for sure but they were manageable. In 2006 we went to El Salvador for two months. Maybe I got a new parasite or maybe it was that my diet protocol had long since flown out the window. Maybe it was the plane rides or too much time living at over 8,000 feet and working at closer to 10,000 feet. Maybe I got re-infected; I still wasn’t afraid of sleeping in the dirt. Who knows, but my health started to slide.

I decided to just accept my fate. I told my doctor that I was cursed with a sensitive digestive system and I was learning to live with it.

In the winter of 2008 the depression returned with a vengeance. I couldn’t cope. I was struggling to make it through every day. I’m really good at putting up a front though. No one had any idea what I was going through. I wasn’t even sure what my problem was.

I nearly lost my husband because with no where else to find blame, I laid the finger on him. For some reason he stubbornly stood by me. I was lost.

That summer I gave in. Maybe I was nuts like the doctors had been saying for the past 10 years. I went to see a shrink. Well, she didn’t think I was crazy. She thought I was sick. How’s that for a Catch-22!

In the fall I reluctantly went to see another doctor. It was getting too serious to ignore. She tested me for everything under the sun. I was surprised there was any blood left in me after all that! There appeared to be a handful of minor things wrong with me, including Lyme disease.

I didn’t like her. The medications and supplements she put me on made me feel like I was going to die and I kept breaking out in hives. Nothing was explained to me. I stopped seeing her after two months.

It was four months later when I went to se a chiropractor that I learned about Lyme disease.

He lent me his copy of Under Our Skin. My husband and I watched it in horror. Was that what we had to look forward to? Did I really have Lyme or was this just the latest in the long list of the so called “diagnoses” I had received?

The LLMD told us about Lyme. He asked questions about my past and my symptoms. Magically all the broken pieces of my life seemed to fit back together.

I had Lyme alright, and co-infections and viruses.

Would I change it if I could? No. Like many others I have discovered so much about myself that I would have otherwise never known. I have become a better person because of this disease.

Do I want to be healthy? Yes.

Emotionally I am in a much better place now than I have been in years. Physically I struggle, but there is a light at the end of the tunnel.

Ashley van Tol, California

Friday, October 22, 2010

Tired of Complaining--Melisa Hodges-Young

My name is Melisa; I am a daughter, a sister, a granddaughter, a niece, a cousin, an aunt, a wife, a mother and a friend. I could be someone that you know.

People tell me all the time I "look good" but they aren't there in the morning shower when my day is greeted with the handful of hair that comes out while I shampoo - and that's only the shower; not the drying and brushing or the loss during the day. I know so many other people are losing or have lost so much more than this and every day I tell myself, "Melisa, it could be so much worse." It doesn't stop the pain of seeing the change though. The other external change I have is with my veins and thinning skin. Many of the symptoms are internal though; you don't see them and I get tired of complaining.

This started 8 years ago for me. We are in Southern Ontario and I was out pheasant and turkey hunting with my husband. Although we wore bug spray, each time we returned home and took off our outer clothing, we would find moving ticks on each other - sometimes as many as 4 each. We knew nothing about Lyme disease or what ticks and other biting insects could carry. In May 2002 my husband noticed a rash on my lower back after I'd showered one morning - it was about 2-3 inches long by about 1-2 inches high (it gradually spread out over the next months). I do not recall it being itchy or really bothersome - just thought I should go see the Dr. I started feeling very unwell and then had some very painful pelvic pain. I didn't associate it with the rash but, we had been trying to get pregnant and that was my first thought.

When my family Dr. saw me he thought maybe I had a "tubal" pregnancy and sent me for an ultrasound. I was a bit shaken and forgot to show him the rash. I was pregnant - I was also very ill - with a myriad of symptoms. I made another appointment and he finally saw me at the beginning of July. Upon seeing the rash he said he'd never seen anything like it before and sent me to a Dermatologist who finally saw me in October. The Dermatologist made the same remark, did a biopsy of the rash and sent a report back to my Dr. stating if my symptoms persisted "Lyme serology" should be considered - he gave me a cortisone cream to put on it. NEVER USE A STEROIDAL PRODUCT IF LYME IS SUSPECTED - it drives the bacteria deeper into the tissue. My symptoms persisted and I was finally seen by an Infectious Disease specialist in Jan 2003 - 3 wks before I had the baby. This very short visit concluded with the specialist saying, "Melisa, even if we did the proper testing and find it to be Lyme disease, I can't treat you because you're pregnant...go have the baby and see how you feel afterwards..."

My blood tests appeared "within normal ranges." The only questionables included a high MCH; Low results in Hemoglobin, Hemtocrit, Red Blood Cell, CK; A very high ESR of 83 (high in range was 20); and the ultrasound showing the enlarged lymph node in the left armpit.

That's where the ball in my game of health got dropped.

I kept a diary of symptoms at that time. My symptoms included - in no particular order: Heart palpitations and chest pain (palpitations almost daily). Tightness in my chest and throat with mild to moderate activity. Tiredness, muscle weakness (daily). Shortness of breath (daily). Nausea, and vomiting (nausea - daily, vomiting sometimes stopped by Diclectin or gravol). Night sweats (from June to end of July). Fainting and dizziness (first fainting at 10 weeks of pregnancy - dizziness daily, even while sitting.) Memory loss. Headaches and head pressure (frequently) left side. Numbness on left side of face, head and neck (frequently). Pain and a "hot" feeling at the ends of different fingers and toes (comes and goes daily). Pain and a "hot" feeling in different areas of my face (almost daily). Small dark lines at the ends of my fingernails (gradually grew out). Inability to sleep (nightly). Rash on lower back. Kidney stones, problems, pain in my back in kidney area. Swollen face, hands, legs and feet. Pain in my back under shoulder blades (frequently). Heartburn (daily). Acid reflux (daily). Visual disturbances and temporary loss of vision (sometimes prism-like and areas of vision go gray - almost daily). Pain in left armpit (daily). Swollen lymph nodes in left armpit. Pain and numbness down left arm and hand (daily). Pain and numbness down right arm and hand (but less frequently). Pain and numbness down legs (frequently). Joint pains. Pain and stiffness in fingers - sometimes I could not close my left hand. Face pain on left and eventually upper jaw...I had a lot of dental work on that side and "extra bone growth" (?) as described by Dentist after I had our baby in 2003.

I had our baby. She was a very difficult baby; she never slept and consumed my life. My enlarged lymph nodes under my left arm were looked at via ultrasound and eventually went down. My headaches on the left persisted; I had a CT which looked "normal." My shortness of breath persisted, heart palpitations, feeling faint after bending or squatting and my memory issues. Nobody explained they could be related to Lyme disease.

I think I'm mostly upset because now I know they could have looked at the placenta for evidence of Lyme spirochetes. I have 2 children now - who most likely have been infected. They have had their own experiences and problems and one day I will feel up to writing about it as well. I've had glimmers of the disease all through the years with ebbs and flows of the symptoms.....Among other symptoms, the left sided pelvic pain and loose hip joint forced me to take an early leave of absence again during my second pregnancy and then my bladder fell after the birth of my second child - I was 34 yrs old.

Last spring I started feeling unwell and asked a friend who works as a representative for a well known Vitamin Company if she could get me a good colon cleanse. I started taking it and it made me feel pretty bad, so I stopped. I then had an incident when I went with my husband's band to Texas in the spring for a few days. After being outside in the sun by a pool for a few hours (I drank water all afternoon) we got ready to go out and watch his band play. After 2 vodka drinks I became very ill and I later passed out after my husband got me back to the hotel. I was so sick and was convinced the bartender had doubled or tripled the shots. After learning more about the disease I now know the infection was brewing again.

In July I woke one morning and went into the kitchen to make my daughter some oatmeal. I felt nauseous. I walked over to put it in the microwave and the last thing I remember is the microwave door and the next thing I remember is my husband standing over me asking why I wasn't answering him. I was laying with my eyes open and my husband didn't realize I wasn't conscious. (In 2002 I had fainted a few times - I felt the "faint coming"....this was different, I had no idea. I literally blacked out.) My family took me over to the hospital where they ran ECG, blood and urine tests. They were concerned about my heart because I had chest pain all over my left side and a sharp pain over my left eye. Everything looked ok and they sent me home after 8 hours. It wasn't until I got up out of the hospital bed that I realized how "off-balanced" I felt. That was my last day of work. Over the next month I went through a period of not being able to walk properly, talk properly - the hardest part for me was that I knew it and couldn't properly communicate it; my family thought I may have had a stroke; my family Dr. thought perhaps it was the "onset of MS, Lupus, Raynauds or some weird autoimmune disease." The Doctors ran test after test, which showed little things but nothing too alarming to them.

I was experiencing chest pain, heart palpitations, headaches, pressure up my neck and head (for the first month it was immense pressure - unlike anything I've had before), face and jaw pain on the left, a disconnect feeling between my body and brain, numbness and tingling in various areas of my body, very sharp shooting pains -some like a knife going in me, my joints were starting to ache again(they did in 2002), my fingers were showing enlarged joints (in 2002 my hands were so bad I could barely move them - especially my left one) major cognitive issues, nausea, muscle fatigue, hair loss, feeling cold all the time, wild mood swings, vision problems - difficulty focusing and double vision, eye "floaters," my veins seemed to be more prominent - I wonder now if it's thinning of my skin but also I seem to have varicose veins in places - I was never a "veiny" person! My palms and soles of my feet ache - as if I have broken blood vessels, I get charlie horses all the time - muscle cramps, sun sensitivity, ear pain, hearing loss and ringing in my ears. The oddest symptom I have surfaced at the worst point with the neck and head pressure, during the night I rolled on my pillow and heard, what I describe as "fast shots of fluid" at the base of my skull - I used to work in the printing industry on hydraulic printing presses - it sounds like a line under pressure; releasing...I heard that same noise a few times during that night and the next day the pressure seemed a bit less intense. Ever since then, periodically I hear that same noise. My right pinky finger has been completely numb since August, I get muscle pain and fatigue, shortness of breath simply from walking upstairs from my basement - as if I've run miles, my arms ache just trying to hold a sheet up to fold (thanks to a friend who has Lyme as well, I know now to lay it on the bed - but, I'm 38 yrs old - my brain says this is just ridiculous!!) eye pressure, jaw and face pain, gum pain and insomnia........I'm sure I'm forgetting some things.

Yes, some days are worse than others, I start to stutter when I'm tired or upset and can have difficulty speaking for long periods - my mouth, tongue get tired and I have trouble forming words. I have trouble recalling words I know that I know; my vocabulary is just plain rotten at times! I have difficulty putting my thoughts down clearly, relaying my thoughts clearly, and I get muscle spasms which include little ones that happen all over my body and that a lot of people are familiar with - twitches I guess but, I can get them so bad that for example, my whole side will move, it's hilarious, like I have a baby inside again!

Blood tests showed only Low Urea, Potassium - High MCH and a very high CH50-Hemolytic Complement at 371 (range is stated as 100-300)

From the tests we know my thyroid is heterogeneous with hypoechoic nodules throughout the gland (hypoechoic nodules can become malignant) my ANTI-TPO and ANTI-TG were 180 and 183 (high in ranges are 35 and 40), I have white matter spots on the left side of my brain, I have (they ran two tests and each radiologist described it differently - I am still waiting to have it re-read) either a "cystic mass" OR "tissue thickening" at the 3rd thoracic vertebrae, I have deteriorating disks at C5-6 and C6-7 with some bulging, I had a thallium heart test and that showed some heart perfusion defects which the radiologist correlated to Lyme. Currently, my Lyme Literate MD (LLMD) is looking into vasculitis.

Last August I had a friend remind me about 2002-2003 and she gave me the website for the Canadian Lyme disease foundation - It wasn't until Sept. that I was out of my "stupor" enough to read the information and contact them for Dr's info. I insisted that my family Dr. refer me to the LLMD canlyme had recommended and that specialist finally saw me in November.

This Dr is amazing; he is brilliant, he is kind, compassionate and above all else an excellent LISTENER. By far one of the best Drs I have come across in this long road. He is confident, based on my medical histroy, clinical evidence and the fact that nothing I'm experiencing can be attributed to any other disease by any other specialist that I have "3rd stage Lyme disease."

I will back up here a moment, because although I was having test upon test I wasn't receiving any help. The best my family Dr. could do was prescribe Lorazepam and told my husband to take me home and "try to relax, go to dinner or something" - I took one pill - still have the bottle.

The beginning of September my Mom took me to a Natural practitioner who had a Biomeridian machine. She tested me and said my "systems" were overloaded and shutting the doors; my adrenals, kidneys, liver, lymphatic, colon... everything. Her testing also showed Borrelia, Rocky Mountain SF and a few other bacteria and viruses. I later had her test my children and both showed the Borrelia and RMSF. She began treating me to open up the systems and flush the toxins out. I don't believe I would be walking or talking properly today if I hadn't seen her. I think I would have continued the downward spiral. I also had an Aunt who said I should start taking as much Vitamin C as I could tolerate and some good friends bought me a huge tub of powdered Vit C. My Mom bought me a huge container of CoQ10 which she and another Aunt insisted on as well as magnesium and B12. My Mom, my family and friends have been a huge support. All of these things have helped immensely I am sure.

The LLMD started me initially on Doxycycline - 200mg in am and 200 mg in pm. This past January he changed it to 250 mg of Azithromycin AM/PM and 200mg of Plaquenil Am/PM (that is almost 1000mg a day), I am taking all of the vitamins I mentioned earlier along with a multi and a really good probiotic that I take before bed so it has time to work. I also take milk thistle and flax seed oil (capsules) and iron. I'm very fortunate to have a mother, family and friends who believe in natural things as they have been a huge support and help to me. And I am a firm believer that God put things on this earth for us on purpose so that we could remain healthy. I take epsom salts baths, I have even had foot detox baths. I also recently started some of the protocols that Stephen Buhner has in his book.

I'm getting brain freeze now, you'll have to forgive me. I don't type well - I find it not only hard to get my fingers to work but, to get my thoughts out clearly. I re-read everything and find it takes hours to do what used to take minutes.

Three days ago I actually thought I was beginning to feel a bit better, less "puffy"/inflamed...then that same evening I got hit really hard with the shooting stabbing pains...they are so bad at times they make me cry in an instant. I now realize I'm going to have "waves" of wellness and that each day I feel less of the symptoms, is a day to take advantage of and do the now "special things" with my family. These days tire me tremendously but are so worth it!

Financially, I do have medical coverage through work for the antibiotics but I have to pay up front and then wait for the 80% back from Insurance Company (I am currently on an unpaid sick leave from work). The medication alone is almost $300.00 - then factor in the probiotics, multivitamins and everything can imagine what I'm spending!! I have submitted a claim for disability but, the Insurance Company hasn't given me a decision yet. I'm trying to be patient but, I can't afford the medication this month.

**update - I had a friend talk some sense into me and I charged it to the credit card...yet again! Do I feed my children? Pay the mortgage? Buy my medication so that I can get better and get on with my life? We have always provided for our family with two people making an income. In January, we had to remortgage our home with a consolidation.

We Ontarians have a Dr. in Mississauga, Ontario who is currently being investigated by the Ontario College of Physicians and Surgeons for his treatment of Lyme disease patients (although they have not received one complaint from a patient!)

Thank you for taking the interest in and the time to read my story, which was a painstaking task although very goal from all of this is to help stop the misdiagnosis and mistreatment of ailing people and to help educate people so that they can help themselves if ever the situation should arise.

Melisa Hodges-Young, Canada