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Mary H's Story
It all began over 10 years ago.....nothing unusual about that early spring. The horses were ready to be ridden and I anxiously awaited planting flowers, getting the screen porch up and enjoying my children for the summer.
I remember a large hardened red raised rash on my right shin. It was warm to the touch and after showing it to my husband figured that it probably was "spider" bite. It certainly was like no other that I had had before. It tended to spread to about the size of a tennis ball and after a couple of weeks faded and disappeared. I thought nothing of it. Had never heard of Lyme disease and knew nothing if what lay in store for me.
Up to this point in time I had been an active person holding down a full time job on a busy adolescent psychiatric unit as the afternoon charge nurse. I had 2 beautiful children ages 13 and 9. We lived in a semi rural area and had 2 dogs, 1 cat and 2 horses. I did spend time with the horses trail riding and often would pick ticks from the dogs. The area in which we lived was wooded and the common wood tick was prevalent
My knowledge of Lyme disease was nil. As a registered nurse, I lacked much in knowledge, training and experience in diagnosing infectious diseases such as Lyme disease. At this time little was known about Lyme disease in our area. There was little public awareness.
The end of May of that year, I had promised my daughter, who was a Girl Scout, that I would chaperone a 3-day Girl Scout outing. I had worked evenings on Thursday night and during the night became very ill with fever, chills, nausea and body aches. Oh, the flu, I thought. It was hard for me to tell my daughter that I couldn't attend their outing, but no way could I go.
Well, that was the flu that never went away. Many things in my memory have faded, but that particular bout with the flu never will. I was the turning point in my life. At 37 my entire life was to change in ways that I never thought I would imagine. I would have experiences that I never thought I would ever experience.
I went to my general practitioner after not recovering for over a week and a half. The fatigue was unending and the general aches and pains were not only unbearable but frustrating...oh, just the flu I was told. After yet another week my family doc was out of town so I saw another one. He at least did some blood work and told me that I may have Epstein Barr Virus (Chronic Fatigue). I researched that and found it to be one of those diseases that are given to pre menopausal yuppie women who were complainers.....I who had never been a complainer!
I began to have gastrointestinal problems with constant nausea....this has always been a recurring theme for me along with joint and muscle pain. About 1 year earlier, my father had died suddenly of a ruptured aortic aneurysm. I felt that I had adequately dealt with his death, but with my recurring physical complaints, I felt I may have been going through a delayed grief reaction for which I had grief counseling.
The unending symptoms did not abate so I was referred to a gastroenterologist. I had the pleasure of an upper and lower GI as well as endoscopy.....oh they did find a hiatal hernia....I guess that almost everyone has that to some extent....lose weight and you'll be fine.
I soon developed heart palpitations. The EKG was normal, the echo cardiogram was normal and the stress test was normal. They were attributed to stress!!!
Soon at age 40 my vision began to fail. I had floaters and lost my distant vision requiring me to get corrective lenses. Not quite the way it is supposed to word at age 40, but at least it was documented change.
I continued to experience stabbing pains in my limbs and head. I had problems with headaches and "head stabs" behind my eyes. My documentation at work began to seem nonsensical as I had to reread everything I wrote and correct it. My brain was going too. I had difficulty with finding the right word and often times would forget what I was going to say mid sentence. My children took great pleasure in correcting me and I felt ashamed.
I also found that I developed unusual sunburns....my skin would become mottled under very warm conditions....not the usual sunburn that would be predicted.
I had problems with balance and felt unsteady on my feet at times. I had no endurance and became fatigued very easily. Many of the activities I enjoyed I could no longer do.
My sleep was disturbed in that I had panic attacks at night, cold sweats, up to the bathroom to void 3-4 times per night and awoke early, feeling as though I hadn't slept at all; This coupled with a constant low grade fever.
I eventually felt that I was suffering from clinical depression so turned to my peers for assistance. I was reassured that I was not mentally ill, but did have a "real" illness that none could find a diagnosis for.
In January of 1994, I had the good fortune to attended a workshop on Lyme disease. As a part of the presentation, a questionnaire was handed out with approximately 80 items listed as symptoms of Lyme disease. I scored 85% and was dumfounded. I had been to see over 12 practitioners and no one had mentioned this disease as even a possibility. I spoke with the narrator and she directed me to a physician that was currently treating in this area.
Current knowledge in this area was to treat for 6 months, and that was with a Lyme "literate" doctor. This doctor had Lyme disease and was on the mend. What could be done for me after over 5 ½ years? A clinical diagnosis was made based upon the rash and my symptoms. My Lyme titres have always been "borderline."
I wrote a letter begging my way into this practice as this doctor was taking no new patients. I was seen and started on oral amoxicillin 3000 mg daily. I have never had an IV line and have had some extra does of Biaxin and Zithromax on occasion. At this time, 4 ½ years after starting treatment, I can say I am somewhat better, although I have now developed pre-ventricular contractions (palpitations) and always have chronic upper back and neck as well as knee pain.
I don't know if these symptoms are permanent and the frustration of not knowing and the avoidance of this disease by practitioners infuriates me on those days I have the strength to be infuriated. I have tried on several occasions to "get off" the antibiotics, just to have a recurrence of symptoms.
The longest I have been off has been 3 months with resulting frequent PVCs, cognitive problems, "stabbing" pains in my extremities, increased muscle and joint pain as well as increased fatigue. I also find that if I get overly tired and eat a poor diet with high fats or sugars, my symptoms are worse....and that seems to be the case over the holidays!
I have had to leave my job at the hospital and now work for an insurance company 4 days per week. My work days take a lot out of me and leave little energy for leisure activities. I pray that someday this disease will be recognized as a chronic illness so that I can get the same respect and aggressive treatment that those that have MS, or diabetes have. In my mind that is a pretty pathetic prayer!
Mary Halsten
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