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