After years of coping with Lyme disease, it sometimes seems as if little more is known about it today than it was when it was first discovered. We know that its presence has been around for about 20 million years, but we can date modern problems with the bacterium to 1975, when several cases were identified in two Connecticut towns, Lyme and Old Lyme. In 1978, it was learned that the disease is tick-borne.
“My son got so sick from Lyme and associated diseases that I honestly didn’t believe he was going to survive,” said Dr. Kathy Spreen. “Chris had a tick bite that he got while doing an internship in Delaware. He came home and asked, ‘Does this matter?’ There was a tick in there wiggling, and I said, ‘Well, let’s just take this thing out and put it in a jar and see what happens.’”
Spreen had been trained to think that Lyme disease was no big deal. But a day and a half later, Chris was so sick that he could barely move. The family doctor said the rash wasn’t round enough or red enough to be Lyme. He put Chris on doxycycline. Within two days he seemed to be doing better. Then things changed suddenly.
“He crashed,” said Spreen. “He then had fevers of 106 degrees, had rigors where he shook so bad from chills that it looked like he was having seizures, and had he soaking sweats. We were changing bedding constantly. We took him to the emergency room. None of the doctors who saw him, including me, unfortunately, had any idea what was going on with him.”
There was a tick in the jar, the patient had a classic rash, and doctors were arguing back and forth as to whether or not it was Lyme disease. Chris left the emergency room as sick as when he entered. “Then,” Spreen recalls, “we found the Lyme Disease Association of southeastern Pennsylvania through a website, and they found us a doctor who had heard of Lyme disease. My son was treated very aggressively for six months. I think they saved his life.
“While I know next to nothing about farming, I know that many farmers have Lyme disease,” said Spreen, who spoke at a seminar at a recent Pennsylvania Farm Bureau annual meeting in Hershey, PA. “I am quite sure that Lyme disease is endemic in Pennsylvania. Pennsylvania is the number one state annually for new cases of the disease, and this is interesting because we know that we’re barely capturing most of the cases. Unfortunately, we are number one year after year after year.”
New York and New Jersey have more cases because they have a higher population than Pennsylvania. Meanwhile, Delaware has the highest incidence, a number derived from the number of cases per population. Most healthcare providers don’t know about Lyme disease. It is not just under-diagnosed, but grossly under-diagnosed.
“Doctors who know about Lyme disease are few and far between,” says Spreen, who has authored a compendium about the disease, the book she says she wished she had when her son got sick. “It wasn’t because of a dearth of information,” she says, “but rather there was too much information. When you get on the web and enter Lyme disease, you get thousands and thousands of hits. The problem with that information is that a lot of it is confusing, contradictory, conflicting, complex or just plain wrong. It just wasn’t matching what I was seeing in front of me.”
Pennsylvania has the perfect tick habitat. Ticks love suburbs. They do not like perfectly manicured lawns, but prefer instead living on the edges. They also like farms and the Commonwealth’s climate, which is not too wet and not too dry. Pennsylvania not only has farmers; it has Amish farmers. There appears to be a higher incidence of Lyme disease among Amish farmers.
“There are health care providers,” says Spreen, “who just see Amish farmers with Lyme disease.” Possibly, she says, Amish susceptibility could stem from “long grasses and tall grasses at the edges of fields” where ticks live and breed.
Lyme bacteria are among the most fascinating on the planet. It has evolved to the point where it can survive just about anything. Because of that, in some patients Lyme disease can go on and on. “It seems to go away,” Spreen says, “and then it flares back. A Lyme bug can burrow into tissues, into joints, into the heart, into the kidney, and it can burrow into the brain. If a dog is going to die from Lyme disease, it will probably be due to kidney failure. If a person dies of Lyme disease, it will likely be due to heart problems.” Furthermore, Lyme disease has the remarkable ability to mimic symptoms of other illnesses. It is known as the Great Imitator, because it can mimic more than 350 other diseases. For this reason, the medical community often has trouble accurately diagnosing Lyme disease.
Some Myths About Lyme Disease
1. Only deer ticks spread disease.
2. You can only be infected if the tick is engorged.
3. The tick has to be attached for 24 or more hours.
4. Only Lyme disease is important.
5. No Erythema Migrans (EM) rash, no Lyme disease.
6. No positive lab test, no Lyme disease.
7. Only 10-30 days of treatment is ever needed to manage Lyme disease.
8. Single short-course antibiotics are all that is required.
9. Symptoms persist because the patient isn’t trying hard enough.
10. Using antibiotics in Lyme disease will cause resistance.