I had always thought that Lyme disease was discovered in the late 1970's in Lyme, Connecticut, and that is how it got its name. Lyme disease was supposed to be uncommon in Maine. After meeting a young lad in North Sebago last week who has Lyme disease and doing a little personal research, I discovered how little I knew about this serious malady.

When I met Josh Cutting (17) and his mother Rosey Carruthers at their home in North Sebago Josh looked like any other high school teenager, except for the shunt in his arm. It is a constant reminder of the frequent doses of antibiotics that he must take as treatment for Lyme disease. As inconvenient as the treatments are however, he and his mother are greatly relieved that he has finally been correctly diagnosed after more than fruitless years of visits to four hospitals and nearly twenty doctors.

Rosey Carruthers and her son Josh Cutting. Photo by Allen Crabtree

Josh's symptoms began about 3 ½ years ago, although he doesn't remember being bitten by a tick. He developed a characteristic Bull's Eye (EM, or Erythema Migrans) rash, which his family doctor diagnosed as a spider bite. No antibiotics were prescribed for it.

Josh and his mother had no reason to doubt the diagnosis, but soon after the rash went away Josh started experiencing knee pain, dizziness, blurry vision and numbness in his hands. The symptoms came and went, along with chronic fatigue and depression. He was unable to regularly attend school and his mother has had to engage a tutor to help him with his lessons so that he hopefully can graduate with his LRHS class next year.

Suspecting Lyme disease his mother had him tested twice for it, once in Portland and once in Boston. Both tests came back negative. Doctors diagnosed Josh with everything from lupus to mental illness, and some even suggested that Josh was making up his symptoms. Nobody seemed to be able to correctly figure out what Josh had.

A 125-year old disease

German physician Alfred Buchwald first discovered what we now call Lyme disease in 1883. The spiral-shaped Lyme bacteria, Borrelia burdorferi, that cause the disease are carried by deer ticks, fleas, mosquitoes, mites and mice. The disease has been around for some time, and has been discovered in rodent pelts that have been stored in museums from the 1800's. Throughout the 1800's and early 1900's more discoveries were made about the disease and its symptoms, and 100 American and 300 worldwide strains of the bacteria are now known. The first known incidence of Lyme disease in America was in 1970 when a grouse hunter in Wisconsin was bitten by a tick and became infected. The name "Lyme" was applied in 1976 when a cluster of cases was reported from southwestern Connecticut.

A disease that has been known for nearly 125 years in countries around the world should be well understood, with reliable tests and treatment for it, or so I thought. I couldn't have been more wrong.

Less is known about Lyme disease than about AIDS. The illness is extremely difficult to detect and there is no effective test for it. Two types of antibody response tests have only a 40% accuracy rate. The infection can hide within body tissues and imitates 368 different illnesses. Lyme disease ruins the quality of victims' lives by striking them with various severe symptoms which may resemble one or more systemic degenerations or dysfunctions such as multiple sclerosis, fibromyalgia, chronic fatigue syndrome, lupus erythematosis, Parkinsonism, rheumatoid arthritis, amyotrophic lateral sclerosis, multiple chemical sensitivity syndrome, psychiatric disorders such as depression and anxiety, Alzheimer's, and/or many more. Lyme disease is frequently misdiagnosed as one of these other illnesses. Although there is a vaccine for dogs, the vaccine manufactured for use on humans for Lyme disease, OSP A, has been removed from the market because of serious side effects in 1/3 of the recipients. There is no known cure for Lyme disease and its effects may last for years.

Lyme disease is found all over our country and in Canada, and is prevalent on six continents. It is the second fastest spreading infectious disease in America, and has been called a pandemic more infectious and insidious than any other known illness. The U.S. Center for Disease Control and Prevention in Atlanta reports that nearly 2 million cases are known in America, and disease experts believe that only 1/10th to 1/20th of all cases are reported. There have been about 1,000 confirmed Lyme diseases cases in Maine since 1980, with 175 cases reported last year. In 1998 Maine ranked 10th in the nation for incidence of the disease with 6.3 cases diagnosed per 100 thousand population. The number of cases has been increasing each year. "Maine is one of 12 US states that account for 95% of Lyme disease cases" according to Geoff Beckett, assistant state epidemiologist. We have ticks that carry Lyme disease in Maine.

The four ticks on the left are deer ticks (l-r an adult female, and adult male, and two nymphal deer ticks). The largest tick in view (outside the hook) is a female American wood tick, shown for comparison. A ruler (in 16ths of an inch increments) is on the top. The fish hook is a #8. Photo by Jim Occi, courtesy of the Lyme Disease Network

This has been a bad tick year

I don't recall ever seeing so many ticks as I have this year. On a two hour ramble in the woods this spring I picked 50 wood ticks and 2 deer ticks off my dog Colby, and several who were crawling on me. Until June we were finding more ticks on the dog when he came back in from runs in the field, and occasionally now a stray one or two will show up. Although the wood tick (or dog tick) has been known to carry the Lyme bacterium, it is only the deer tick (or black-legged tick, Ixodes scapularis) that is known to carry it in Maine.

The deer tick has a two-year life cycle, beginning when the female tick lays about 2,000 eggs. Larvae that emerge from the eggs in Maine often feed on the white-footed mouse (Peromyscus leucopus) and get infected but do not pass along the infection. The larvae molt into nymphs the following spring. Up to 25 percent of unfed nymphs in the northeastern United States are infected. During spring and early summer the nymphs feed on new hosts, again white-footed mice or any of a wide range of animals, including dogs and humans. An infected nymph may infect its new host during its four-day feeding period. Nymphs are thought to be responsible for most human Lyme cases due to their small size and because they are active in April, May, and June.

In the fall of the second year, nymphs molt again and enter the adult stage looking for a host to feed on. The infection rate for adult deer ticks in infested areas of the Northeast is 40 to 60%. The adults are most likely to cause infection between June and September. Male ticks tend to stay on the host and die, but the females engorge for five to seven days and then drop off into the leaves, where they live through the winter. The following spring they lay eggs and complete the two-year cycle. Adult ticks that do not find a host in the fall may survive over the winter and become active again from early spring until about mid-May.

Adult deer ticks are smaller than the more common wood tick, and their nymphs are only about the size of a pinhead. It is easy to get bitten and not even know it. Researchers generally feel that ticks have to be attached for 24 to 48 hours in order to transmit the disease, but others feel infection could take less time. When you go into the fields and woods, biologists recommend long pants and shirts, insect repellent with DEET, and frequent tick checks. Remove any ticks that may have attached themselves to you using tweezers, and save them in a plastic bag in the freezer in case you develop Lyme symptoms and the tick may need to be tested.

Finally, help for Josh

A Sebago neighbor finally steered Rosey and Josh in the right direction. Joe and Anne McMahon's daughter Bridget (17) contracted Lyme disease four years ago and went through a similar trial for more than two years before finding a doctor who knew how to diagnose and treat it. Bridget had been an honor student and, when infected, became so ill she couldn't go to classes, plus suffering several other classic Lyme symptoms. After two years of treatment Bridget is well on the road to recovery and her old lively self.

At the McMahan's advice Josh went to see the world's leading Lyme pediatric specialist Charles Ray Jones, M.D., medical director of the Pediatric/Adolescent Medicine and Lyme Disease clinic in New Haven, Connecticut. Dr. Jones has treated 6,000+ children of all ages with Lyme disease, and he has found that half cannot point to a tick bite, and less than 10% have the bull's eye rash. All however have lived in or visited a Lyme endemic area and all have demonstrated a decline in the way that they play and perform in school. All have shown one or more of the Lyme disease symptoms.

Josh Cutting receives daily antibiotics to treat his Lyme disease. Photo by Allen Crabtree

Dr. Jones believes that "Lyme is a clinical diagnosis…. [Medical] test evidence may be used to support a clinical diagnosis, but it doesn't prove one has Lyme. About 50 percent of patients I've seen have been seronegative for Lyme but meet all the clinical criteria." While there is no known cure for Lyme disease, Dr. Jones has seen his patients respond to months or years of continuous antibiotic therapy. He recommends "When Lyme disease is a possible diagnosis the children should be evaluated by a Lyme knowledgeable physician who will continue antibiotic therapy until all Lyme symptoms resolve. In most circumstances, Ixodes scapularis tick attachment should be treated within one month with antibiotic therapy."

It is encouraging that the medical community and the public are becoming more aware of Lyme disease. Physicians may now access newly published treatment guidelines from ILADS (International Lyme and Associated Diseases Society). Patients can access information on Lyme disease at www.lymediseaseassociation.org

With the help of a Lyme disease support group and a doctor who knows the disease, Josh's outlook is much brighter than it was a year or two ago. He wanted me to write this article to let others know about Lyme disease and to give them hope. Josh and his mother can be contacted at (207) 787-2649, or Anne and Joe McMahon at (207) 787-2679 for more information. Contributions for Josh's medical care can be made directly to the Josh Cutting Medical Relief account at Norway Savings Bank.