Stand Up and Be Counted!
Harvey C. Perry II
T hree years ago Harvey C. Perry II thought he was going to die.
He was so miserable he told his doctors he would not take any more medicines orally. "I said I didn't care if I died. I hit a wall."
The "wall" that Perry hit was a rare occurrence. He was diagnosed with having three tick-borne diseases simultaneously, a circumstance that has killed other victims.
Yet Perry, now 60, is very much alive. He feels totally normal these days but he feels his ordeal in the summer and early fall of 2006 should serve as a warning for people like him who frequent the outdoors, and a lesson for doctors who treat tick disease victims.
Perry is a banker-he specializes in helping non-profit organizations with their organizational and fiduciary issues. As a senior vice president and director of the Washington Trust Bank's office for non-profit resources, he travels around the state a lot.
But it is his avocation as an environmentalist that got him into trouble. Perry is president of the Westerly Land Trust, which to date is protecting more than 1,000 acres of undeveloped land. He also has six acres of woods surrounding his home.
For years he has worked as a volunteer for the land trust, helping with all the tasks that are involved in providing stewardship of lands.
"I was very much exposed to ticks," he says. "I was bitten many times and never got Lyme disease. Maybe I was just lucky."
But his luck ran out in July, 2006. He spotted the tell-tale red bulls-eye rash on his body and called his internist, who also happens to be a friend.
He told the doctor about the rash and the doctor prescribed the common antibiotic, doxycycline.
"I took the medicine and the rash started to fade away. But two weeks later I had these incredible sweats. I felt horrible. Tired all the time. I thought I had a virus. My temperature swings went up to 104."
On a Friday, Perry called his doctor who then said he thought he also had another tick-borne disease, Babesiosis, which attacks red blood cells. The doctor gave Perry another prescription-the treatment for Babesiosis is different from that prescribed for Lyme disease. The doctor told him to call back on Monday.
The next day Perry and his family left on a planned trip to Philadelphia. They checked into a hotel there. He felt sicker.
They had planned to go out to a restaurant that night but he decided to stay at the hotel. The next day he felt worse and they decided to drive home. "I remember only bits and pieces of Sunday," he says. He could not drive and the trip was a horror-traffic jams made it a seven-hour ordeal.
At home he got worse. "My wife says I was doing weird things." At dawn they decided to call rescue. They also called his internist who told the hospital to forget the emergency room-admit him instead.
Thus started an eight-day hospital stay.
"I had a blinding headache. I could not stand any sound or light. I had terrible chills, sweats. I lay in a fetal position and could not stand to have anyone in the room. They kept taking blood. They could not give me morphine because my blood pressure was so low-70 over 30. I sweat so much they had to change the bed three times a day. I had I-Vs in both arms to keep me hydrated."
Medically he was on doxycycline and a triple dose of the medicine prescribed for Babesiosis. But he was getting worse.
Finally they determined Perry not only had Lyme and babesiosis, he also was infected with granulocytic ehrlichiosis which is now called Anaplasmosis. That meant taking another prescription orally. He was now on four drugs.
An infectious disease specialist was called in from Rhode Island Hospital and he came to Westerly Hospital every day to check on Perry. Monitoring was constant.
At the end of the third day he got his internist and the specialist in his room and asked "Where is this thing going?'"
Their reply was they now knew all of the diseases that were involved. The most encouraging thing they could say was "You are getting worse less rapidly."
His liver shut down completely. "I started wondering whether I was going to die. I started talking with my wife about funeral plans."
His blood counts, both red and white, were nil. Babesiosis destroys red blood cells. Anaplasmosis affects white cells. "I was defenseless."
All of the drugs he had to take orally started affecting his stomach which became bloated. The pain was excruciating. He told his doctors "I don't want to take anything more orally. I don't care if I die. We started to negotiate. I hit a wall."
The doctors came up with one idea. While one of the antibiotics had to be taken orally, the others could be fed via a tube. But it was risky. The tube had to be inserted in an artery in his chest and there was a risk of infection.
That was the course he decided to take. The tube was inserted with multiple shunts-water, nutrition and three of the drugs were fed into the tube.
The procedure worked. On the seventh day the tube was removed. The next day, he was discharged.
At home he would get up for a half hour and then sleep the rest of the day. "I was 56 and felt I was 96," he says.
After another week of recuperating at home he was able to go to work for one hour but then went home to sleep the rest of the day. He had to use a cane for two months.
At time strange things happened to his mind-he calls them "memory blanks." For example one time he was driving to his office and suddenly forgot how to get there. He pulled over until he was able to recreate the route in his mind.
By early November, he says he started to feel normal. He did a lot of Internet research on tick-borne diseases and now uses the information he gained from his own research and his connections with Dr. Thomas Mather, director of the Center for Vector-Borne Disease at URI to coach friends and relatives about the dangers of tick bites.
He also is convinced that physicians treating people for Lyme disease should test for the other two diseases at the same time as the Lyme test. And he is especially critical of the state Department of Health which he feels should make tick-borne diseases more of a priority. So much is appropriated for mosquito control in this state and so little for tick issues, he says. "When was the last time someone died of Triple-E in this state?" he asks rhetorically about the mosquito transmitted disease.
He has no idea how much his sickness cost-he had health insurance. But he guesses "it was several tens of thousands."
His near-death experience-"I'm convinced that had I not gone into the hospital that day, I would not be here today"-has not deterred him from enjoying his endeavors in the outdoors. But he religiously follows the advice of the TickEncounter Resource Center. When he goes out into the woods he wears treated clothing, boots and has his pants tucked into white socks that come up practically to his knees. "Like Tom Mather says, in the woods you are not out to make a 'fashion statement.' " When he comes home, he strips on a back porch, throws the clothes in the washer and takes a shower. 'I don't want this to happen again."
He has given a few public talks about his ordeal and continues to spread words of caution to those who venture into the woods. He says there is no single magic bullet to the problem of tick diseases-the problem has to be attacked on several fronts, including perhaps, a vaccine some day.
Most of all, he says, "We need to get it accepted as a public health issue. I don't care what it costs-if one person is saved, that would be money well spent."
Written By Rudi Hempe
- Bob Butler "My memory was so bad, my wife had me tested at Rhode Island Hospital for early Alzheimer's," he says. The testing was negative but he started wondering "was I just getting goofy or what?"
- Harvey C. Perry II He was so miserable he told his doctors he would not take any more medicines orally. "I said I didn't care if I died. I hit a wall."
- Buck Benoist "He always checked himself and wore white socks," in order to spot any ticks. "I checked him too," she adds. "He would go out in the yard and get tired from nothing,"
- Rudi Hempe "I stood there in the corridor holding my magnetic employee card and suddenly I didn't know where I was."
- Bill Thornton "I was so sick, I asked God to take me."
- Kate Moran Her knee swelled up, she had some memory problems, "I just wasn't myself."
- Brian Follett "One night I realized I could not see my dinner on a plate so well. It was like hitting a brick wall. It all came very fast, like a storm."