Judy Creamer and Pam Creamer apply an intravenous antibiotic treatment for Pam’s Lyme disease.by Kitty Wheeler
Coastal Journal contributor
WOOLWICH — Pam Creamer of Woolwich is bravely fighting third-stage Lyme disease, which is in its fourth year of assaulting her body. It’s a tough fight, and it’s expensive, so the community is planning to host a potluck supper to help cover the staggering medical costs Creamer is facing for her treatment. Friends and family will gather at the old schoolhouse on Montsweag Road, bringing both financial contributions and potluck fare, on Friday, September 28, from 6 to 8 p.m.
Pam and her family have been a part of this community for four generations. Creamer’s great-grandfather Orrin Creamer and his wife lived next to Pam’s grandparents, Jerry and Helen Creamer, one and a half miles down the road from Route 1. They moved into a red cape in the mid ‘40s. Jerry worked at BIW during World War II, before he became caretaker for several properties on the road. Tom and Judy Creamer built a house across from his parents in the ‘80s with the intention of retiring there.
Then their daughter Pam and her partner, Anita Roelz, decided to settle in Maine, and snuggled into Tom and Judy’s house 10 years ago. The strong Creamer family ties continue today, as Tom and Judy, who first spent weekends here looking after Tom’s parents until they died, are now helping out as daytime caregivers for Pam, who has been on an intravenous antibiotic treatment for eight months to control her invasive Lyme disease. Roelz, who makes gemstone jewelry, handles the nighttime care.
Pam is an artist. She has painted murals on clients’ house walls for 25 years throughout the country. Her other talent is painting animal portraits, particularly dogs. She and Roelz opened the Creative Turtle, an art gallery in Boothbay Harbor, four years ago. Creamer’s paintings, Roelz’ hand-made jewelry, and dog paraphernalia have been for sale. However, the gallery is now on the market due to the seriousness of Pam’s illness and the need to have financial help to cover treatment costs.
Lyme disease can be a devastating illness, and it’s often hard to diagnose. The disease (named after Lyme, Conn., the place it was first discovered in 1980) is transmitted when tiny deer ticks carrying the virus attach themselves to a person or animal. In about 50 percent of patients, a bull’s-eye red spot appears around the tick’s bite, and patients who detect this symptom and immediately seek medical help are put on a 30-day antibiotic treatment of doxycycline.
This experience was not the case for Pam. She never noticed a tick bite, and didn’t see a red bull’s eye on her skin. Instead, she experienced a swollen left knee three years ago, and sought the care of an orthopedic surgeon. He felt she had rheumatoid arthritis after he had tested her for Lyme disease with inadequate results. Her condition didn’t improve, and she went to an internist, who suggested she try ibuprofen to bring relief. That medication led to an ulcer, and she ended up in the hospital.
Finally, she sought a Lyme disease specialist in Kennebunk. He prescribed oral antibiotics, which seemed to improve her condition. However, by the fall of 2011, neurological problems in her body became an issue. A neurologist ordered an MRI, and then confirmed that Pam had brain lesions that indicated that the disease was in a late stage. By researching specialists in this field on the Internet, Creamer discovered Dr. Richard Horowitz, who practices in Hyde Park, New York.
Dr. Horowitz has worked with 11,000 Lyme disease patients, 90 percent of whom have greatly improved after long-term treatment. For her initial workup with Dr. Horowitz, Pam had $15,000 worth of blood tests. Those tests revealed that, as well as suffering from Lyme disease, she now had four co-infections, including Babesiosis, Q Fever, Bartonella, and Anaplasma. This series of never-ending complications show just how frightening Lyme disease can be.
Pam is currently undergoing eight months of a massive dosage of intravenous (IV) antibiotics, after which she will have six months of oral antibiotics. The IV medicine causes a lot of side effects, such as elevated liver enzymes, diarrhea, and kidney issues. Weekly blood tests determine how Pam’s body is responding to the medication. Her immune system is unstable, and she takes daily pills to boost her ability to fight the infection.
Added to all the above-mentioned stresses and complications, not only does she have this crippling disease, but her insurance company, Anthem Blue Cross and Blue Shield, will not cover these expensive treatments, because results from a CDC-required blood test for Lyme disease fell below a certain benchmark on four occasions. Her monthly cost for the IV antibiotics are $3,000; each visit to Dr. Horowitz is $350; and weekly blood tests are additional costs. Meanwhile, Pam has not been able to work for several months.
So Pam could really use some help right now.
Lyme disease spreading
The incidence of Lyme disease in Maine has been increasing in recent years. There were 981 confirmed or probable cases in 2011, and the numbers are rising. The 45 to 64 year-old cohort represents the highest number of cases. But because blood tests are not all that reliable, and since doctors do not always agree on the diagnosis, insurance companies have been reluctant to cover medical expenses. So the people of Maine are at risk of contracting the disease without knowing it – and for not getting insurance to help pay for the treatment once a diagnosis has been made.
In the midcoast area, Sagadahoc County had the fifth highest rate of the disease, with 99 cases last year; Lincoln Çounty was third, and Knox County, first.
Nationally, 48 states have Lyme disease patients, and the disease is spreading through China and Europe as well. White-tailed deer have been the main carriers for infected ticks; white-footed mice now carry it, too. Tick season is usually associated with summer months. However, with warmer winters, ticks are surviving year-round. Dogs and cats are also susceptible to picking up deer ticks.
Pam’s advice to all of us is clear: “Be educated and aware about the disease,” she said. “Check yourself and your animals every day for the presence of any ticks. And wear insect repellent. Your own immune system is key as to whether the disease becomes a problem. And remember that blood tests are not always accurate in determining if you have the disease.”
The potluck spaghetti supper is a tribute to the youngest of four Creamer generations from Montsweag Road. John Gable, a well-known artist who lives across the road from Pam, is donating his prints, some signed, some not, for purchase. The South Woolwich Fire Department, which owns the schoolhouse and nearby shed, has just finished renovating the shed, and the group wants to celebrate its accomplishments, too.
The supper will be a special event for residents of Woolwich, especially for the Montsweag Road community. Please bring a dish and a financial contribution. If you are unable to attend, you can make a contribution to Pam’s treatment by sending a check, made out to Pamela Creamer Medical Fund, and mail it to Ruth Appleyard, 26 Montsweag Rd., Woolwich ME, 04579.
For more information on Lyme disease, visit MaineCDC.gov.