In 1984 I was an at-home mom with two sons and several foster children. From the fall of that year to 1986 I was plagued with recurrent bouts of "flu" with aching joints, swollen neck glands, sore throat, muscle pain and disorientation.

I thought I had a low immune system, perhaps as a result of my workload. I finally went to my Dr., who agreed something was very wrong. But all tests were negative. As the "flu" bouts were now almost continuous, I went to a Naturopath. Blood test results showed "an unusual report"; diagnosis- bacterial or parasitical infection. My symptoms declined temporarily with supplements. A year later they had worsened considerably and now I had bone pain, sweats, insomnia, fatigue and headaches. I could sit in a chair for hours, just blanked out and catatonic.

By 1989 the symptoms were in clusters; the worst was within a few days. But now I had cardiac problems. Tests, drugs, hospitalizations, nothing helped nor could any Dr. find the problem. When I had a month of severe, unbearable back pain I was diagnosed with a soft liver. The Naturopaths' tests came back with the same results as before; parasitical or bacterial infection.

In June I found a magazine article about Lyme Disease and showed it to my Internist. He chuckled, said it was an East Coast Disease but he'd order the test anyways. I was present when he opened the test results. His mouth literally dropped to his chest! Positive for Lyme! I now had a name for what was wrong with me and I felt vindicated!.

Knowing nothing about Lyme Disease, he sent me to a diagnostician of some repute. I made the mistake of taking a list of my symptoms. Despite the positive for Lyme Disease and the notes of my organic problems, he told me if I were his patient he would send me to bed for three months with valium! I had been written off as a hypochondriacal, menopausal housewife.

In August of 1989, I developed a small "ring-worm-like" rash. My GP gave me several creams to try but it spread to 4" in diameter. While on vacation I exposed it to the sun and it disappeared in two days.

Sick and exhausted, I decided to stop fostering children. It upset me terribly and I became depressed. 1990 was plagued with severe chest pains. Nitroglycerine helped somewhat, but the pain was terrifying at times.

By 1991 I was still exhausted and continuously dizzy; I couldn't catch my breath. Also my kidneys had deteriorated by 30% and a biopsy was ordered. As I was waiting to be taken in for the test, three physicians rushed up to me. They were all Cardiologists and quickly informed me that my preliminary ECG had caught a second degree heart block. A kidney biopsy at that point would be dangerous. I was sent to the cardiac unit and two days later had a pacemaker implant.

A month later, kidney biopsy done, I was told by my Nephrologist that I had Glomuleronephritis; but that he didn't understand the test results. He should have been able to discern which kidney disease specifically, but could not. Therefore, no treatment was possible, only regular monitoring and cholesterol medication as my kidneys could not process as they should.

More flu symptoms plagued me, now the muscle pain hit my arms as well as my legs. With arthritis too, my mobility was seriously affected. My pacemaker was making me dizzy and frequent reprogramming was not helpful.

A Rheumatologists' tests for arthritis were negative; diagnosis was "Palindromic" joint pain. Now it was in my spine and hips. By Christmas I had another serious problem, severe bowel pain and almost constant diarrhea. X-rays were negative so I was given yet another drug. It did not make much difference. It was at this point I planned for my suicide for when my health problems became too much of a burden for my family.

In early 1992 I was prescribed another medication for cardiac arrythmia; my ongoing pacemaker problems could not be solved. In February, as a result of a newspaper article about Lyme, I made an appointment to see a physician who had Lyme experience. For the next two years I was on antibiotics. Though I had "herx" reactions, they didn't make much difference. At that time it was not known what dosage of antibiotic was safe for someone with cardiac anomolies; there was concern that it could be dangerous. In retrospect, I'm sure the disease did not progress in that time.

I had to go off the antibiotics from time to time as they worsened the diarrhea. I was now losing blood and mucous, I cried and was often sick from the pain. By July, the kidney, bowel, bone and joint pain were considerably worse and I was experiencing numbness in one hand.

Another specialist to see, this time for bowel tests; but a sigmoidoscopy and colonoscopy were negative. The diagnosis was Irritable Bowel Syndrome. I lived on Immodium and rarely left the house. Now I was back and forth to the ER at Royal Columbian Hospital with cardiac problems. The ER doctors felt I was over reacting because of my pacemaker. My Cardiologist said to ignore what they said, there is something wrong, eventually it will be found. Prophetic words that probably saved my life.

One morning, while sitting with a cup of tea, I felt an overwhelming dizzyness, unlike anything I had ever known. My father rushed me to ER again. Just as the Doctors and pacemaker technicians approached it happened again. I saw my heart flatline on the monitor and I was gone. I had a very profound near-death experience while I was clinically dead. I came to twenty to thirty minutes later; the doctors face up to mine, yelling, "breathe". I was very angry, he hurt my ears! I was given a temporary external pacemaker and had a new implant two days later. It was discovered that my old pacemaker had a compromised seal. Body fluids would seep into it and it shorted out. I haven't had a problem with it since. On a subsequent visit to the Pacemaker Clinic, I was told they had been determined to try for a further ten minutes before giving up. My near-death experience certainly stopped any thoughts of suicide, regardless of my health problems, life is too precious!

By winter my kidneys had deteriorated to 50% function. If they reached 25% I would need dialysis. Now I was plagued with "hot" spots, searing brief pain on my buttocks. Despite constant tinnitus (ear-ringing) and earaches; my Ear, Nose, Throat specialist cannot find anything wrong.

1993 was characterized by less pain, except for the bowel problems. I frequently broke out in dime-sized lesions on my legs and torso. And so it continued the same until late 1994 when my Naturopath ran more tests for the bowel problems. The test results showed pancreatitis (an earlier ultra-sound had not shown anything) and "leaky gut" syndrome (all nutrients pass too quickly through the system). On her recommendation I stopped eating all white flour products and took pancreatic enzymes. There was a major difference in two weeks and all bowel problems disappeared in two months.

In 1996 another new symptom appeared, yet again, a different kind of dizzyness. After collapsing to the floor I was off to ER again, the diagnosis was Labyrinthitis, a middle-ear problem. I was sent home the following day by promising to stay in bed for three days, then a week in a wheelchair. More drugs to stop this dizzyness.

The rest of that year and the next was a continuation of symptoms, mood swings, arthritis and muscle pain, constant headaches, memory loss, worsening concentration problems, brain fog, fatigue and insomnia.

1998 brought more chest pain, four days in ICU. This time the diagnosis was Esophaegeal spasms and a hiatal hernia; more meds to help my stomach. In Aug. while sitting, I was struck with another serious dizzy spell. I had to be helped to bed and ambulance was called for, this time I could not walk. This was another Labyrinthitis attack, far worse than the first. I could not open my eyes for 36 hours or I would retch horribly. After a week I was able to walk and went straight home to bed. Two days later I awoke with double vision.

Back to my ENT specialist who sent me immediately to an audiologist in Vancouver. Tests confirmed I had lost all right side balance, a permanent condition. A Cat scan showed I had two anomolies, equidistant in my brain. Now it was suspected I might have a bi-lateral acoustic neuroma (tumor on each side of the brain, usually benign) The Neuro-surgeon determined there were no tumors, but anomolies probably caused by the Lyme Disease. He confirmed that the vestibular-cochlear nerve, going to the 7th cranial nerve, was destroyed. Although my brain would compensate somewhat, I will never have perfect balance, must be careful in low light and must avoid total darkness. Balance is connected to light, without light I would fall. A Neuro-opthamologist confirmed my eyes are alright, except for a two degree separation. This bothers me only when I'm tired and can't focus, then I get double images.

Six months later my recovery had gone as far as it could. I have difficulty walking on uneven ground, still have occassional stinging pain in the back of my head, become nauseous if I move my head too fast and can't walk more than short distances unassisted; especially streets and parking lots. I seem to have disturbed perception and a crosswalk makes me sweat with fear. I lurch when I walk but my feet seem to mostly compensate. Anyone holding my arm can feel the lurch. I can't stay in a store too long or the multiple images disturb me.

1999 was a better year in some respects. I still must walk slowly and have given up most of my gardening; the up and down movements make me ill. My Lyme symptoms are in distinct clusters; worse for one week of the month. Another new type of dizzyness, without warning, wanting to faint, up to twenty episodes a day. It's not activity related, but relieved if I snap my head sharply to my chest. The diagnosis for this is a pinched vertabrae in my neck; incurable, I will have to learn to live with it. My physician cannot explain the tingling in the back of my neck and back.

But the neck problem was one too many; a stress test showed I was borderline for severe depression, due to the anger and frustration of my health problems. A mild non-addictive anti-depressant made a tremendous difference.

Once, an ER resident asked how I can spiel off all of my health problems so casually. Of course, the answer is that you just do it (and save the primal scream for at home). But I'm always fearful; of hurting myself by losing my balance, of walking into a moving car, of having another Labyrinthitis attack that would devestate the left side and render me permanently bed-ridden. Despite all my efforts I cannot find another Lyme -literate physician. My first one had retired.

In the summer of 1999 I bought a used computer. Soon I was linked to Lyme websites and learning more and more. I now knew what I needed but my GP wasn't accepting what I had learned without documentation and a knowledgeable doctor to confirm it.

The New Year of 2000 was the turning point. I called into a talk show on the radio; a Lyme -literate doctor was on. He agreed to see. After a check-u[ and a full history he confirmed Lyme Disease and prescribed treatment, to be overseen by my family doctor. My GP was reluctant to order IV antibiotics without further confirmation and spent some time looking for a Lyme knowledgeable Infectious Diseases specialist. When I saw him he diagnosed me as the most "rare, unique case of Lyme Disease" he had ever seen.

My treatment was delayed while I had another pacemaker implant; the old one was worse for wear. Then I spent a further two days in bed waiting for surgey again, it was discovered the old leads to my new pacemaker weren't working right and they too needed replacement. I was extremely frustrated!

By May I was finally on IV Ceftriaxone. The first and immediate improvement was the so-called pinched nerve in my neck; it just disappeared! After ten weeks of IV I went on to oral Flagyl and Biaxin. I've had to play with the dosage of Flagyl to avoid unbearable herx pain but am seeing slow but steady improvements.

By the summer of 2000 I was able to lift my one year old grand daughter without help or support, my arm muscles were improving. Now, almost a year later, I no longer have headaches, rib or bone pain and many other subtle improvements. I am still "herxing" and have learned the hard way not to overdo and get lots of rest. I think I'm still a long way from being cured and that some of my disability will be permanent. But I have hope for the first time.

I have learned a great deal from my health problems and am very appreciative of my family's support. I have so much to be thankful for, including the care of a very dedicated and caring Lyme physician.

My favorite saying is "Yesterday is history, Tomorrow is a mystery", Today is a gift, That's why it's called the present". These are the words I live by; I greet every day as a gift.

Susan Starchuk

It is with great sadness that the family of Susan Starchuk (nee McLennan) announce her passing on September 19th, 2007 at 62 years old. She was predeceased by her father Donald McLennan and survived by her mother, Laurie McLennan and the love of her life, husband, John Starchuk. Also missed by her 2 adored sons, Darrin and Jeff (Lonnie); granddaughters, Sophia and Chloe; and her three sisters, Nancy McEachern (Blaine), Donna McLennan and Julie Goertzen; and her faithful companion, Daisy. In lieu of flowers, donations to the Kidney Foundation are gratefully appreciated. For service information, please contact Fraser Heights Chapel at 604-589-2559. Published in the Vancouver Sun and/or The Province on 9/22/2007.

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