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.
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
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.
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.
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
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
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.
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.
