Ann McChesney
Middlesex County, New Jersey

Total cost: up to $500,000
Number of family members with LD: 1
Lost work/school: Forced to retire on disability
Number of years sick: 7+

How did it happen?

In the summer of 1989, Ann developed a rash on her legs. Her doctor at out HMO treated it as if it was a topical rash with a cortisone ointment and, gradually, it disappeared However, she gradually developed the classic symptoms of Lyme disease--soreness in her joints, head symptoms-feelings of heat, movement, light-headedness and dizziness, plus slight urinary incontinence. She suffered from frequent urinary pain and all the symptoms of bladder infections, but generally tested negative for bacterial infection. The bladder "infections" were treated off and on with antibiotics.

Finally, after persistently returning over and over again to the doctor to try to get relief from the persistent feeling of illness, she was tested for all sorts of possible diseases, including MS, among others; had MRIs, saw numerous specialists, and underwent too many tests to remember. After about a year of fruitless searching for a reason for her illness, the doctor finally prescribed the ELISA test for Lyme disease. It tested positive and she was given the standard three-week dose of amoxicillin. Unfortunately, after about a week or so she developed a massive allergic reaction, with hives everywhere and eventually near total skin peeling. She was then given doxycycline for about a two-week period. Repeated bladder "infections" continued to plague her and usually resulted in a ten-day course of doxycycline. All the while the other Lyme symptoms continued to worsen.

Finally, in the summer of 1991, she convinced the medical experts, primary care physician and her supervisor, at our HMO that she was still suffering from the Lyme infection. They finally agreed to prescribe a two-week course of the intravenous antibiotic Rocephin. After two weeks, she was so much improved, she convinced her primary care physician to continue the treatment for another week. Then after three weeks, most of the symptoms were gone and by strong and persistent argument, convinced the head of the medical unit to continue the treatment for another week. At this time, in July 1991, all of her symptoms were gone!

Unfortunately, this was the last time in her life that she was to be symptom free. The Lyme symptoms gradually returned over the next two months and then she was referred to the local university and medical school and their "Lyme expert". He observed her decline and diagnosed her as having a case of "fibromyalgia", prescribing low impact aerobics (which were impossible because of the dizziness) or swimming as treatment. Meanwhile, all of her symptoms were returning in generally more serious forms, muscle pain, severe urinary incontinence, dizziness and light-headedness and difficulty in physical exertion, such as climbing stairs. When her head symptoms returned, he stopped the swimming and finally, in November, he prescribed a three-week course of IV antibiotic Claforan. It helped to alleviate her symptoms, but not to the degree that the treatment in July did.

Well before this point, our family decided to get out of the HMO, since we were thoroughly dissatisfied with their general lack of competence and the lack of any alternative to their treatment decisions about out healthcare. This situation was totally unacceptable. We planned to resume the appropriate treatment with another physician after the end of the policy year, since at that point, there was no alternative to paying the full price of any care outside the HMO. We decided not to go outside for IV treatment, costing about $3,000 - 4,000/month. We realize now that was probably a very bad decision.

Our new doctor specialized in Lyme related cases and when Ann was first examined by him in late 1991, he prescribed an oral antibiotic to "carry her over" to 1992. Then he made every effort to treat her with IV antibiotics, using several different ones over three to four months. Then he used oral antibiotics, but was never able to eliminate all the symptoms, the most refractive one being the urinary incontinence. He even tried steroids, having heard that a doctor on the West coast was having some success. These made the incontinence problem even worse, in fact, one day in the grocery store her incontinence was so bad that her urine ran out on the floor, after saturating the Depends and Serenity pads she always wore. Finally, our doctor recommended we seek help at one of his colleagues who had some success with especially difficult Lyme cases.

Starting in early 1993, her new doctor continued to try different antibiotics, both singly and in combinations, often pulsing them. He also changed them when they seemed to lose their effectiveness, which was generally after about six weeks or so. In addition to the drugs, he also recommended that several herbs; vitamins and minerals be part of the therapy. During this time, she was on IV therapy for several courses, one as long as five months. Unfortunately, she did not improve, gradually losing her mobility and becoming partially paralyzed on her right side. All the other symptoms gradually worsened, with brief periods of improvement when a new antibiotic was used. The improvement was always shorted lived. It seemed that when the organism became acclimated to the new antibiotic, it roared back stronger than ever. This course of treatment continued until the end of July 1995, when Ann slipped on a rug and fell, fracturing her hip. A couple of weeks later, her physician committed suicide, leaving her without anyone who was familiar with her case.

While she was recovering from her surgery first in the hospital and then in a rehabilitation hospital, serious problems with orthostatic hypotension prevented her from having much physical therapy. She had a lot of tests to confirm her Lyme disease, including spinal puncture, PCR and others we can't remember. These were mostly negative; unfortunately, the lab threw out her spinal fluid before the PCR could be run.

In late 1995, we became frustrated with our primary care physician and again sought a Lyme expert. We found him in Westchester County, NY. He very carefully analyzed Ann's condition and after about three months decided the only alternative was to restart IV treatments. Since we lived so far away, we made arrangements to have a local doctor supervise the medication. When the managed care company refused to allow the IV medication, we decided to continue to try oral antibiotics. Since the 1995 hip fracture, Ann has never regained her mobility, being too dizzy to walk more than a few steps and being unable to use a wheel chair because of her paralysis. Due to her incapacity, she was forced to take disability retirement from her position, which she loved, as an assistant professor of Nutritional Sciences at Rutgers University. She is confined to a hospital bed except to visit her doctor and on the rare occasions when she is feeling up to going to church or for a short ride. She requires a full time attendant for all necessary daily activities (Toileting, eating, bathing, etc.).

Recently, a neurologist diagnosed Shy-Drager syndrome, a degenerative nerve disease. If this diagnosis is correct, it was probably caused by the long-term struggle with Lyme disease.

What effect on the family?

Needless to say, this illness has had a devastating effect on her life and our family. She is confined to her bed and our home; cut off from her lifework, her associates and her students that provided her with mental and psychic stimulation and rewards. Before her hip fracture, her students would wheel her around on her desk chair and change the overheads during her lectures. They and she really enjoyed the stimulation and interaction of the learning process. Now, when Charles is not at work on weekends, he spends them caring for Ann.

Perhaps the only good thing is the decision of our youngest son to pursue a medical career by attending medical school. He was in denial about his mother's illness until the hip fracture, when he finally realized she was really ill and he would have to deal with it. Our other two sons were in college most of the time of her illness and seemed to never be really effected negatively.

What did it cost?

The cost of this illness in terms of the healthcare dollars is incalculable, I estimate the medications, tests and physician bills to date are between $450,000 - 600,000. At the end of 1994, the total insured cost was more than $250,000. That doesn't count the HMO cost before 1992, estimated to be about $150,000.