Ashley Denham, Tom Norris and Judy Jones all have something in common.
Somewhere in their pasts, all three Central Oregon residents were likely bitten by a disease-carrying tick.
They have each been dealing with pain, neurological problems, joint aches and other symptoms for years. All three have gone through a variety of diagnoses, including multiple sclerosis, fibromyalgia and chronic fatigue syndrome.
Yet, treatments for those ailments have failed to alleviate the problems and the patients now believe they actually suffer from chronic Lyme disease, a bacterial infection transmitted through the bite of an infected tick.
Each has documented lab tests showing antibodies to the bacteria that causes Lyme disease in their blood streams. But each also has run into barriers both for receiving a diagnosis of Lyme disease and obtaining long-term treatment, because of controversies surrounding the disease within the medical community.
”It is a lot of complicated testing. The symptoms aren't very clear, which is why you see some controversy around Lyme disease and problems with physicians diagnosing it,” said Shannon Dames, communicable disease coordinator for the Deschutes County Health Department. ”The symptoms are not specific. There is debate about whether someone, if the testing is negative, if they could still have it.”
While Lyme disease does exist in Oregon and is carried by the deer tick, also known as the black-legged tick, it is more common in the northeastern United States. According to information from the Oregon Department of Human Services, less than 15 cases of Lyme disease were reported in Oregon each year from 1999 to 2002.
In Deschutes County, Dames said, one case of Lyme disease was confirmed in 2004. But, she said, many people who are bitten by infected ticks do not show acute symptoms of Lyme disease.
Those symptoms can take weeks, months and even years to surface. At that point, Dames said, Lyme disease is much more difficult to diagnose and treat than when it is caught early.
Ashley Denham, 18, remembers being bitten by a tick on the top of her head when she was camping with her family at the age of 6.
She scratched the tick off herself before showing it to her mom.
”I told her, 'If you scratch it off and you don't pull it off properly, you could get Lyme disease,'” Theresa Denham said she remembers telling her young daughter at the time.
Soon after the camping trip, Ashley developed a fever and a rash that covered her body. She became lethargic and complained of severe knee and ankle pain. Her physicians were stumped about the cause. The family was told her problems could be as simple as growing pains, Theresa Denham said.
Ashley went through a period where she experienced heart problems; she also developed neurological disorders and would have seizures. She had nose bleeds, was sensitive to light and to noise.
”It's been a long history of hell,” Theresa Denham said. ”During this time, Ashley was tested for everything you can imagine.”
At the age of 14, Ashley's blood was tested for antibodies to Borrelia burgdorferi, the bacteria known to cause Lyme disease. She has since had six different blood tests confirming the presence of the bacteria and other tick-borne infections in her blood stream.
Although she has been treated with antibiotics - the standard course of treatment for Lyme disease - Ashley still suffers from some of the debilitating symptoms.
”My legs hurt really bad,” Ashley said. ”It feels like an ice-cold rod shooting up the inside of my leg. It feels like it's right in the middle of the bones.”
Because Ashley has already had oral and intravenous antibiotic treatments, her family's health insurance carrier has denied further antibiotic therapies.
”Lyme patients can't get treatment,” Theresa Denham said. ”What makes me sad is that we've been going through it for 10 years and I don't feel a whole lot has changed.”
A network of others
The Denhams founded the Oregon Lyme Disease Network two years ago in an effort to support other families struggling with the disease and to provide a place where information could be shared.
Since then, the family has realized that Ashley is not alone in her fight. The network has more than 100 members, Theresa Denham said, many of whom have left the state seeking Lyme disease treatment from specialists in California and on the East Coast.
Tom Norris, 47, said he has spent the past seven years in a wheelchair and believes he was infected with Lyme disease at least 17 years ago, although he lived with a diagnosis of multiple sclerosis until just a few years ago. He takes muscle relaxers and hopes to start using natural remedies, including herbs, to ease his muscle spasms so he can stop taking the drugs.
”That's basically where I'm at because I've exhausted everything else,” Norris said.
After finally receiving his diagnosis of Lyme disease from specialists in New York, Norris said he was treated in Bend for Lyme disease for two months. When the symptoms continued, Norris traveled to California to try experimental hyperbaric treatments, which were not covered by his insurance company.
The treatments, which attempt to purify the body by flushing it with oxygen, worked well for Norris. He was able to stand and walk with a walker for the first time in years, but at more than $100 a day, he couldn't afford to continue hyperbaric therapy.
”It got to the point where we just couldn't afford it anymore,” Norris said. ”I was so close, so close, it was awesome.”
Judy Jones, also 47, lives in Sisters with her parents because her physical problems are so extreme that she can't take care of herself. She first got sick at the age of 25, she said, but believes she could have been infected with Lyme disease as early as the age of 12.
”I have excruciating pain in the joints ... the bottoms of my feet hurt,” Jones said. ”I have some motor-control problems. I tend to run into things and I drop things a lot. I get fevers. The other big one is the cognitive symptoms. I get confused very easily. I'm forgetful.”
Ashley, Norris and Jones all say that antibiotic treatments helped relieve symptoms for a while, but once the treatments ended, the symptoms returned. They all agree that being cured is unlikely.
”I would never give up hope,” Jones said. ”I do a lot of work, not only with the medications that I take, but also following a healthy diet. Psychologically, I'm doing everything I can to promote my healing. Having Lyme disease as long as I have, my doctor says it's a miracle that I'm alive.”
Chronic versus acute
When a person is bitten by a tick and a red rash in the shape of a bull's-eye appears at the site of the bite, it's fairly easy to diagnose an acute Lyme disease infection, said Dr. Philip Parshley, medical director of the Oregon Board of Medical Examiners.
In that case, the patient would be treated with a short course of antibiotics lasting a few weeks and, the Lyme disease would be cured, Parshley said, although he pointed out he is not a Lyme disease expert.
”The signs and symptoms of the acute case are fairly easily identified. They are not always present, but when they are, most people are easily cured by antibiotics,” Parshley said. ”Some people, with a delayed diagnosis ... will have residual symptoms, even after aggressive treatments.”
The trademark bull's-eye rash from a tick bite only appears in roughly 60 percent of Lyme disease cases, according to the Oregon Department of Human Services. The rash is typically located at the site of the bite, although it can show up in other places on the body, and it is usually noticed within a few weeks of a tick bite.
Some patients never develop a bull's-eye rash and they may never know they were bitten by a tick, Dames said. The black-legged tick that is most often responsible for causing Lyme disease spreads the bacteria most easily in its nymph stage, when it is very small.
”Someone might be bit and not realize they were because (the ticks) are actually quite small,” Dames said. ”Someone can carry Lyme for many years, exhibit mild symptoms and never get treated because they think it's arthritis.”
The symptoms of Lyme disease, including fatigue, joint pain, muscle pain and spasms, are similar to symptoms for many other diseases, Dames said. In order for patients to be considered presumptive Lyme disease cases under Centers for Disease Control guidelines, they must either have the bull's-eye lesion or a positive blood test for Lyme, along with a symptom that can be linked to the disease.
But, as Ashley, Norris and Jones have found, even documenting those factors may not be enough to treat and cure chronic Lyme disease.
At that stage, Parshley said, a cure may simply not be possible.
”Some of these residual symptoms are difficult to identify if they came from the Lyme,” he said. ”That type of a situation is difficult to deal with medically. There may be a question of whether there is any treatment.”