Lyme Disease Is More Than A Tick Bite
The following was testimony given at the Lyme Disease Rally in Washington, D.C on May 14, 1996.
I am Hilary McDonald, and I have come here from Colorado to explain to you what Lyme disease has done to my family. My father died from Lyme disease this past December. I also suffer from Lyme disease. I am lucky because after 4-1/2 years of antibiotic treatment I have been able to resume a normal life. When relapses occur, I go back on antibiotics, and so far they have continued to work. I contracted Lyme disease in Armonk, New York, in 1989. Despite the fact that I was then living in an extremely tick-infested environment, which should have made the diagnosis of Lyme disease quite logical, I had to pursue many doctors to obtain the diagnosis and sustained treatment I needed. I educated myself, and that is the reason I got better.
Unfortunately my father, David Cole, was not as lucky. In 1994, he began to show signs of neurological Lyme disease. After unnecessary major surgery resulting from a misdiagnosis, he began to decline rapidly. We were told that his symptoms were due to the operation and would resolve in time. As the summer passed, we watched him change from an outgoing, gregarious wonderful human being to someone introverted, depressed, violent, and desperately suicidal. Clearly something was wrong.
That September, my father was admitted to a local Savannah hospital because he was increasingly disoriented and my mother found it too difficult to care for him at home. He became very agitated, could not sleep, and paced the halls. He would not keep his clothes on, and his speech became difficult to understand. He was so disruptive to the other patients on his floor that he was moved to the "psyche unit." There he was straightjacketed and given drugs to "calm him down".
Based on his symptoms and given the fact that my father, who was an avid outdoors man, had lived for 55 years in Westchester County, New York (a county with a high incidence of Lyme disease) I was able to persuade a doctor from New Jersey to treat him for Lyme disease. We had my father heavily sedated, put in a straightjacket and flown by air ambulance to New Jersey. He was admitted to the hospital, where he remained restrained in a bed for 14 weeks while being treated with IV antibiotics. My father resembled someone who had late-stage syphilis. He lost the ability to swallow food, recognize family members, and speak. His behavior was violent, yet he was completely unaware of his surroundings, and incapable of communicating with us. He did not eat for three months, and had to be fed through a tube. He had bedsores, and lost control of his bowels. He went from a healthy 6'2" man weighing 220 pounds to a 140 pound skeleton. I do not think there is anything worse than watching someone you love go through such tture. During this 14-week period, we had my father tested for Lyme disease. The blood serology was negative, but the urine and spinal PCR's were highly positive. There was no doubt that my father had Lyme disease. Despite the positive tests, after seven weeks of treatment my father's doctor started receiving pressure from the hospital board to release him. (Another doctor in New Jersey had recently lost his medical license for his methods of treating Lyme patients.)
After a few more weeks, our doctor succumbed to the pressure and asked that we remove my father from the hospital. He had no suggestions regarding subsequent treatment or placement. We were lucky that at this point my father developed a life-threatening blood clot-vasculitis due to the Lyme disease. He remained in the hospital for three more weeks and was able to continue the IV antibiotic treatment. It was during this period that he miraculously came to himself and wanted to know where he was. He had no recollection of the preceding six months of his life.
My father was then moved to a rehabilitation home in New Jersey, where he spent six more weeks learning to walk, talk, and control his violent outbursts. With each move, we had to educate every person involved in the case. Most members of the medical profession believe that Lyme disease is not much more than a few flu-like symptoms. It was obvious that we knew more about Lyme Disease than any of the doctors. It was even more obvious that they resented our knowledge and felt threatened by it.
My parents returned to Savannah after four and a half months. Again, my mother had no local doctor to turn to. My father continued to improve while on oral antibiotics. Then, overnight, he developed optic neuritis, which caused him the loss of sight in one eye, and severe ataxia, which made him lose his sense of balance. He returned to his wheelchair. He was again put into a Savannah hospital, where he was given steroids. I pleaded with them not to do that: any doctor who treats Lyme can attest to the way steroids destroy an already abused Immune system. He lost another 40 pounds as we helplessly watched him lose all the ground he had worked so hard to gain. I believe that the steroids basically killed my father.
Following this episode, we found another Lyme doctor who said he would try his best to treat the disease aggressively. My father once again was airlifted to a hospital in Long Island.
In total, my father saw over 100 doctors. He stayed in seven different hospitals plus two rehab facilities for a total of I8 months. His medical costs have exceeded $2.5 million. His at home care costs were approximately $100,000 per year and were paid for by the family. We are in the ongoing process of dealing with the denied medical claims, which still arrive daily, and we have had to hire an advocate to assist with the paperwork. Our months spent taking care of my father were easily bearable. It was the lack of informed, compassionate attention from the doctors that devastated us. We were your typical American fairly abused by the current inequities of the medical system.
My father died peacefully at the age of 65 on December 10, 1995. He was in his home
surrounded by my mother, my sister and me, along with his canine friend, Salsa. That morning I told him we all love him very much, and that we would miss him every day. I let him know how very proud I was to have had him for my father; and I
assured him that the horrors of the disease had not changed our love for him. I also promised my father on that day that I would make sure this dreadfull disease received the attention needed to eradicate it. That promise has brought me here
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Last updated on 29 December 2000 by