--"When I stood at the mirror in August 1992, I struggled to remove what I thought was a tiny black scab. Little did I know how that one moment would mark the beginning of a life altering journey."
After struggling for several frustrating minutes, I was able to pick the "scab", no larger than a tiny spot, off the side of my back. Surprisingly, it bled. "What the heck," I thought to myself. No matter, I went about my business. Oddly though, a few weeks later, I found a huge, bullet-type rash on my back, about the same area as where the "scab" was removed.
I immediately made an appointment with my doctor, as I also felt like I was having the flu. Since I had some medical experience, I recognized the bull's-eye rash as possibly being a symptom of being bitten by a tick, though at that time, I did not associate that rash with the "scab" I had removed earlier.
Several days later at my appointment at the clinic, I lifted up my blouse to reveal the rash, which was now much larger than when I had first called to make my appointment. "No, that's not a lyme rash." I remember my doctor saying matter-of-factly. "Well, what is it then?" I asked, concerned. "I'm not sure," was my doctor's reply. This was a general practitioner in the State of Wisconsin, already a lyme-endemic area. The doctor referred me to a dermatologist instead.
When I got to the dermatologist, his reply--one guess, "Nope, that's not lyme disease." By this time, the first bullet rash had disappeared and now, only a couple weeks later, I had small raised red blotches that were itchy all over my back, truck, neck and shoulders. He prescribed a salve which did nothing for the rash.
Several more weeks went by and I came down with major flu symptoms, joint pains, fevers of 104 degrees, gastrointestinal symptoms. I was bedridden for four days and could barely move. I went back to the original doctor, who then proceeded to put me through intense diagnostic tests, colonoscopy, a sigmoidoscopy, Xrays, MRI's, multiple blood tests, stool parasite tests, the works.
A few thousand dollars later, nothing came back with any clue to what was making me sick. Ten months passed and I was still so sick that my business that I ran out of my house, was now compromised. I could no longer work long hours, and had to hire employees to do my work and driving. I spent many days in bed though I wonder if anyone even noticed. I was raising two small children under the age of 3 when lyme first reared its ugly head in my life.
Fast forward a couple years later to 1994 when I began to have unexplained episodes of anaphylaxis to foods, medicines and even a flu shot. I continued to see multiple physicians to no avail. Meanwhile I was growing more ill daily. I was losing weight and suffered from bouts of anorexia, fatigue and depression. My gastro system was haywire and I could no longer travel. I was also losing my hair. Doctors told me "you have female pattern baldness." I doubted that diagnosis as well. Something told me I was sick but I couldn't get anyone to find a cause. I began to suffer from visual and auditory hallucinations and noticed "people" in my bedroom at night, which was extremely unnerving to me to say the least.
One question I kept asking each doctor after giving them my complete medical history was, "Do I have Lyme disease?" The reply was always a resounding "No." Instead, over the course of the next 6 years I was diagnosed with depression, endometriosis, fibromyalgia, and needing counseling due to hypochondria.
In 2000, just weeks before my second marriage, I awoke one morning with my usual stiffness and pains to find that my left ear was extremely painful. Over the course of the next 5 days, I lost complete feeling in the left and central parts of my face, the hearing in my left ear, the vision in my left eye, and my ear became an inflamed, swollen mess. Additionally, I had excrutiating pain in my "skin" that hurt to the touch, from the top of my head all the way down my back, my left arm, my shoulder and the left side of my body. If you poked me anywhere I could not feel it.
Although 5 physicians saw me in 5 days, no one knew what was wrong with me. I was prescribed various antibiotics, and to each one I reacted adversely. I was not getting better, I was getting worse. Finally the next doctor a week later said "I know what this is, you have shingles of the cranial nerve." Relieved that someone "knew" what I had, I took his advice and took steroids and acyclovir, supposedly it was going to help me. Three days later I ended up in the emergency room with an extreme reaction to the medications. The ER doctors said "You don't have shingles," but declined to venture a guess as to what exactly I did have. Instead, they ordered more blood work and gastrointestinal exams.
Eight excrutiating and debilitating weeks later, I was able to nearly manage a smile at my wedding. In the meantime, because I had endured the facial paralysis and droopy features, I had become keenly aware of the way that people with facial deformities are reacted to in public, lending me a new appreciation for their plight. In my opinion, there is little more dehumanizing than asking a clerk a question and when the clerk notices your facial deformity, answers your question eyes down, or else speaks directly to the person who happens to be standing with you at the counter, even if that person had nothing to do with the question you just asked. It was as if I did not exist or could not understand English. I felt invisible.
From 2000 to 2003, life ran a slowly declining course. I was having great difficulty functioning from day to day. Fatigue, pain, and a myriad of symptoms, (I must add all the classic symptoms of Lyme) plagued me. The left side of my body no longer worked very well. I could not balance or walk straight, taking on the gait of a person intoxicated. I could no longer eat, sleep, eliminate, or function normally. Work was difficult, and my employers did not understand my repeated need for time off, nor did they understand why I would suddenly fall asleep in the middle of the morning or afternoon. If I was wide awake, my concentration was dull or I would forget what I was doing and repeat tasks already done. I began "counting" things, a form of OCD, or holding my breath until a certain event would pass. I would cry at the drop of a hat, or alternately appear intensely happy, for no apparent reason and without a trigger. It is mind-boggling to me now, how all my symptoms, physical, mental and emotional, could be related to one illness.
I started having violent mental images of slain persons, some who I knew, some I didn't. The words suicide, which aren't even in my "normal" vocabulary, became a familiar, unwelcome thought. It was frightening and I thought I was losing my mind. I felt angry and irritable. I smashed a telephone after a conversation with my ex-husband angered me unreasonably. (lyme rage) Everything seemed intensely magnified. I ran nearly screaming out of department stores because the "light" was bothering me. I wore sunglasses indoors and was hypersensitive to sounds, even what normally wouldn't bother me. I smelled and tasted things that no one else did, often making food offensive to me. I had no appetite and struggling to eat each meal became a chore so I often skipped meals altogether.
I suffered sudden panic attacks and heart palpitations regularly. I was afraid to leave my house, and with good reason. I started misjudging distances, even while driving, and I had several very close calls in my car, enough to induce panic attacks whenever I would drive. No two days were the same, and some days I prayed that God would please either take me or cure me. I managed to work a few full-time jobs, but not before I would eventually have to revert to part-time or leave due to missing so much time off work because of my still undiagnosed illness. At one job I even suddenly and inexplicably swore at a manager, with very little provocation, something I would never dream of doing--resulting in my being fired. Again, lyme rage was rearing its ugly head and I had no idea what was happening to me.
I also had a baseball-sized tumor discovered and removed along with my left ovary and fallopian tube in 2002, but no one could tell me why I had a tumor suddenly growing in my abdomen. I was told I had a 30% chance it was cancer and waited pensively for the operation and biopsy to discover that it was not cancerous. I felt very blessed but perplexed with the news it was not cancer. But why did I have a tumor and where did it come from? Several "cysts" (probably lyme cysts) kept appearing on MRI's and then suddenly disappearing over the years, confusing my GYN.
Heart pains and palpitations began to consume me, along with anxiety attacks and visual/hearing disturbances. I wore a holter monitor for months and was told I had an AV node arrythmia, (a common stage 2 lyme complication).
I continued to visit doctor after doctor and moved several times, always consulting new doctors in the process. I received more diagnoses that were inaccurate. One doctor ignorantly told me I needed to see a psychiatrist or a psychologist. One doctor actually yelled at me and said, "I'm not going to hold your hand every time you think you have something wrong with you!" I marched right out of his office, and if anyone knows me, I had no problem telling him what I thought of both his comment and his lack of compassion. Another doctor tried to suggest that I might be peri-menopausal. When I explained that my cycle was regular she just shrugged and suggested I have a spinal tap.
In April of 2003, after missing a great deal of time off work and slowly declining in health, I began to suffer from anaphylaxis again, this time to foods and odors. It didn't seem to be one specific food or odor, but rather a number of things. For months I kept a computer database of every food item I consumed and its ingredients in an attempt to pinpoint the "offending" food. I had already been to allergists many times for the reactions, as well as virtually every hospital emergency room in the lower part of WI at one point or another for unexplained anaphylaxis. Skin and blood tests revealed NO allergies to anything, even the very things that were triggering anaphylactic reactions. Now I was becoming unable to eat any foods. Each and every meal became a battle.
After a few months of this downward spiraling, I was reduced to eating only 5 "safe" foods, every day, for every meal. These included white cheese, corn, oranges, saltine crackers and bananas. I drank water and nothing else. Then I was reduced further to eating only potatoes, cheese and bananas. I was shuffled from one clinic to the next. I visited a dizzying array of neurologists, gastroenterologists, allergists, endocrinologists, rheumatologists, general physicians, gynecologists, osteopaths, orthopedists, and a couple of psychiatrists, you name it, I was sent there. I endured two separate physical therapy trials lasting months at a time, because doctors thought my painful shoulder, paralyzed arm, and neck problems were caused by pinched nerves. Needless to say the physical therapy aggravated the conditions and had to be abandoned.