Melody's Story
In 1982, when I was in my early 30's, life was full of promise. I had completed a Master's Degree in music performance, secured a teaching position at a university and was on the fast track towards a promising career as a performing musician . However, I began to experience extreme fatigue, chronic flu-like symptoms, loss of mental clarity and joint pain. The symptoms progressed so that I was encountering a variety of neurological problems, including difficulty with motor skills, speech, memory, episodes of tremors, and involuntary jerking and periods of paralysis when I couldn't move, or even speak. I also found myself increasingly sensitive to sound, light and touch.
My long-time family physician was compassionate, and many tests were performed, but she could not determine what was wrong. I began to experience shortness of breath. Because I am a performer on a woodwind instrument and sufficient air is critical to my being ability to perform, I used supplemental oxygen in order to continue to play for a period of 4 years. Perhaps the highlight of this period in my life was my performance at Lincoln Center in New York, attached to a portable oxygen tank- possibly a first for that great facility! I knew that refusing to "give in" to my "mystery illness" was the only thing that stood between me and death. I knew that if I stopped playing, death would soon follow.
In 1987 my elderly family physician was forced to retire due to failing health and I was thrust into a medical system which did not know me as a person and did not know my history. My fine motor skills were deteriorating to the point where I had difficulty picking up small objects without dropping them. I saw a family practice MD who told me I was depressed and probably experiencing a lot of health problems caused by my taking a wide variety of "unneeded" nutritional supplement. She wanted to put me on antidepressants. I declined, telling her I was not depressed, but rather crushingly fatigued and ill.
I had several brain MRI's done over the next few years and saw 2 neurologists. One told me she couldn't find anything wrong with me (even though there WERE increasing abnormalities in my MRI's) and the other told me, in front of my husband, that I was quite healthy and perhaps I should just quit my job as a university professor and stay home and have kids !@#@#$%^&* A neuro-psychiatric evaluation found that I was overly obsessive about my health and perceived "symptoms" and suggested extensive psychiatric counseling.
An interesting note was that in the middle of these tests I went into an episode of paralysis where I essentially "froze" mid-sentence. They simply couldn't explain it, and didn't try.
Totally disgusted with the medical profession, but willing to try anything, I regularly visited our friendly psychologist for the next 2 years and didn't see a medical doctor at all. I also explored a wide variety of Holistic modalities, and believe these practices greatly increased my longevity. But, by 1991, even the psychologist agreed that there was essentially nothing more "mentally unbalanced" about me than with most people and urged me to try the medical scene again.
Having heard about a compassionate family practice MD, I took the plunge and saw him. He thought that there might be other leads which should be explored and agreed to send me to see the head of the neurology dept at the Hospital of the University of PA in Philadelphia (HUP). At that point my luck changed. I was seen by a wonderful doctor, who specialized in MS (alas, he is no longer there). After reading my detailed notes and a brief consultation, which probably took no longer than 15 minutes, he hypothesized that I had Lyme. The tests were done and both ELISA and Western Blot proved positive.
I consider myself extremely blessed that those tests were positive, because subsequent traditional tests have never shown positive, since. I did have periodic rashes on my stomach, but don't remember being bitten by anything out of the ordinary, though I had spent a great deal of time in the garden and woods frequented by deer and wildlife (and there are now 8 documented Lyme cases who live in close proximity).
My husband, who had been experiencing poor health, was tested and also found to have Lyme. His symptoms were different from mine, in that he had heart block and gastrointestinal problems, where my major symptoms were neurological and joint related. We thought our nightmare was over, but nothing could have been farther from the truth. Both our infectious disease specialist and my neurologist were arrogant and ignorant in treating late-stage Lyme. They believed that 2 weeks on oral anti-biotics would be sufficient.
The neurologist wouldn't tell me of the risks before a spinal tap was performed, because I was so "suggestible" that I'd "cause" them to happen (HUH?). So, I ended up with a leaking spinal tap that was allowed to leak for a total of 2 weeks because I didn't know what was "normal" and I was afraid I would be dismissed as a "mental case". When I finally saw the infectious disease specialist who performed the tap, he never mentioned that the horrendous pain I was experiencing could be from a leaking tap.
He told me, as I lay on his waiting room floor, that my pain couldn't be that bad because I had driven myself to his office! The emergency room doctor at the hospital gave me pain pills and diplomatically suggested I get another opinion.
By 1992, my husband and I had been the oral antibiotic route, the IV Rocephin route for 6 weeks, the Suprax route, etc. for over a year. Every time we were on meds we improved, every time we went off them we were worse. We decided that traditional medicine had its place, but we were not going to find our cure in that sphere of healing. We carefully researched alternatives and returned to our roots in Holistic health practices under the guidance of a naturopathic healer.
We use an herbal spirochete formula which has equaled in relief any we achieved with traditional meds and without the side effects. We use a number of natural products and nutritional supplements to boost the immune system. We are on natural thyroid meds to try to raise out body temperatures and increase thyroid function. We are using a variety of products to support the adrenals and increase pituitary and hypothalamus function. I take daily injections of B-12 and folic acid which have improved the neurological symptoms and increased leg strength a great deal.
We have found Applied Kinesiology Chiropractic to be very helpful. A healthy diet (organic whenever possible), yoga, prayer, reflexology, cranial-sacral work, massage and gentle exercise have all proven to be helpful, as well as working on keeping a positive attitude. We have found a MD who is open minded in the Holistic health practices we have chosen to incorporate into our healing and who provides us with traditional medical support and testing, as needed. My brain MRI's are now essentially normal, causing my original doctors to say that the MRI's from my pre-Lyme treatment were mis-interpreted and that there was never any damage to begin with.
Today, we both are employed. My husband was able to keep his normal job, though he must restrict the number of hours he works. I have had to reduce my workload (and paycheck) substantially. We tire very easily. If we work too hard, or are under stress, most of our symptoms return with vengeance. I am always in considerable nerve pain, but have learned coping strategies. My husband regularly exercises and rides his mountain bike. We are both performing musicians and are able to maintain a conservative performance schedule. We know our Lyme is not cured, but it is reasonably under control. We are very lucky to be alive.
Someday, I pray that there will be such improvement in Lyme diagnosis and treatment that others will not have to suffer from either the disease or the indignities associated with Lyme-ignorance, and the hostility towards Lyme patients found in too much of the medical sector. Till then, we want others to know of our stories and we spend a great deal of time preaching Lyme awareness and prevention.
Melody and husband
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