ALS and Lyme Disease
Chronic Lyme disease debate: Common ailment or false hope?
By BILL RADFORD - THE GAZETTE
Like the flu, it hit hard and fast.
But Dr. David Martz knew whatever he had was worse than the flu.
"My whole body hurt, and I could hardly get out of bed and I could hardly walk," he said. "I knew something real serious was wrong."
He fell ill in April 2003. He was hospitalized for two weeks and underwent, he said, "every test known to man." Weeks and months went by as his condition deteriorated, and the search for answers continued.
The answer, when it came, was frightening: ALS, also known as Lou Gehrig's disease, a progressive neurological disease that attacks nerve cells responsible for controlling voluntary muscles. You'll probably be in a wheelchair in six months, Martz was told, and dead in two years.
A newspaper clipping sent to him by a family friend gave him a possible alternative diagnosis: chronic Lyme disease. And it put him in the middle of what is being called the Lyme Wars, a debate over the true threat posed by Lyme disease.
Lyme disease is a tick-borne infection most prevalent in the northeastern United States. Mainstream medicine regards it as generally simple to recognize and easy to treat with a few weeks of antibiotics. But some doctors view Lyme disease as something more common and more insidious, often hiding in the body and manifesting as a chronic infection requiring months or years of intensive antibiotic treatment.
They regard Lyme disease as a "great impostor," accounting for some cases of chronic fatigue syndrome, fibromyalgia, Gulf War syndrome and other illnesses with often vague and confusing symptoms.
Martz, who has largely recovered after long-term antibiotic therapy, is a believer Ñ so much so that the Colorado Springs doctor started a practice focused on chronic Lyme disease. A past president of the Colorado Medical Society and the El Paso County Medical Society, the 65-year-old Martz now finds himself on medicine's fringes.
The debate boils down to hope. Are patients diagnosed with chronic Lyme disease being given false hope and wasting money on years of treatment? Or are doctors who don't believe in the condition denying ill and often desperate patients hope when there could be some?
"Rather than close the mind, where's the harm in saying maybe there's another dimension to it?" Martz said. "Let's think out of the box, as the saying goes, and stay open to the possibility that maybe this is more complicated than we realized."
DECLINE AND RECOVERY
Martz grew up in smalltown Illinois and moved with his family to Las Animas, in the Arkansas Valley, in 1956. His father, a Baptist minister, wanted him to follow in his footsteps. But Martz, seeking to combine his scientific interests with a humanitarian bent, chose medicine as a career.
A 1965 graduate of the University of Colorado Medical School in Denver, he moved to Colorado Springs in 1970 and over the decades practiced internal medicine, oncology and hematology. He was a hospice medical director and part-time hospitalist when he fell ill.
The initial diagnosis was a motor-neuron disease of unknown cause, possibly ALS. Lyme disease was considered, but blood samples sent to the Mayo Clinic were negative for Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme. One doctor put him on a month of antibiotics as a treatment for Lyme anyway, but it didn't help.
His legs became weaker, and symptoms spread to his hands and shoulders.
"He fairly quickly was unable to rise from a chair by himself or fully dress himself," said Martz's wife, Dee.
He met all the clinical criteria for amyotrophic lateral sclerosis, or ALS. It's a disease that's difficult to diagnose in the early stages. There is no one test or procedure to establish the diagnosis. And there is no cure.
Dee Martz, a licensed professional counselor, had lost her previous husband to a fast-moving cancer. This would be slower. David Martz's muscles would waste away, but his mind would stay clear, trapped in an increasingly paralyzed body.
"The reality of what life would look like with ALS was very stark," Dee Martz said.
The newspaper article David Martz received offered a sliver of hope. It quoted a Lyme specialist saying the usual tests are inaccurate; more sensitive testing is required.
So Martz turned to a laboratory known for that specialized testing, IGeneX Inc., in Palo Alto, Calif. A conventional antibody test came back negative. But IGeneX also did a urine test, using a method questioned by federal health agencies in a warning last year against testing that hasn't been validated. It was positive.
Martz became a patient of Dr. William Harvey, a Lyme specialist in Texas. He began intravenous antibiotic therapy in January 2004.
By then, Martz said, he was "basically homebound."
"I could walk maybe a hundred yards. I could stand only five minutes, at which point I would begin to shake and had to sit down."
His stamina improved within a month of beginning treatment. In three months, he could stand unassisted for longer periods, and do deep knee bends. In six months, he was much as he is now, his strength and energy about 75 percent of what it was before he fell ill.
With his rapid progress, he became Harvey's star patient.
"Nobody I know of has gotten that much better that fast," Martz said.
Martz retired when he became ill. In January 2005, feel-ing better and wanting to help others, Martz opened a new practice, Rocky Mountain Chronic Disease Specialists.
His stamina still isn't what it was, Dee Martz said, and she worries he could be endangering his health by continuing to push himself.
"But he feels so strongly that his gift of life is something he wants to pass on to others," she said.
Martz has seen about 350 patients in the first year: roughly 70 with neurological, ALSlike illnesses, the rest with problems such as fibromyalgia or chronic fatigue syndrome. And all are seeking answers.
"The average person has seen 24 previous doctors, and they've been told that they have maybe lupus, but it doesn't fit, maybe MS, but it doesn't fit, maybe psychiatric problems," he said.
About 80 percent test positive for the Lyme bacterium using IGeneX testing and are given the option of long-term antibiotic therapy, Martz said. Those who test negative but still fit "the classical clinical picture" also are offered the therapy, and many improve, Martz said.
"That just shows that the testing is not adequate yet."
The therapy is not a cureall, Martz stressed. And, at $2,000 to $3,000 a month, it isn't likely to be covered by insurance, because insurance companies don't commonly recognize chronic Lyme disease.
"You need to go into it understanding that it may not have any benefit at all," Martz said. "But if you wish to try it, we're willing to help you."
Don and Peggy Brown of Yuma, in northeastern Colorado, regard Martz as their daughter's saviour.
Sabrina Brown, 18, began having problems four years ago. It began with upper-back pain, but other symptoms began to pile on: acid reflux, blinding headaches, fatigue and cognitive problems, such as confusing colors.
Don Brown said they went to about 80 health care practitioners Ñ doctors, chiropractors, acupuncturists, "you name it."
Ultimately, the answer they got was, "She's female, she's a teenager, her hormones were raging and she was crazy."
Peggy Brown, through Internet research, zeroed in on chronic Lyme disease as a possible explanation. Initial testing was negative. But it all fit, the Browns thought.
Then they found Martz.
"That's when the ball started rolling," Don Brown said. Blood samples sent to IGeneX tested positive for Lyme, a diagnosis Martz agreed with when reviewing Sabrina's long list of ailments. Last spring, he started her on intravenous antibiotics.
Today, with her treatment continuing, she is thinking more clearly and her pain is reduced.
"Just everything is better," she said.
The Browns are believers, but in medical circles, the debate rages on.
Those sticking to conventional wisdom acknowledge untreated Lyme disease can lead to a host of ailments, and a small percentage of patients with acute Lyme disease continue to have problems after standard antibiotic therapy.
There is some evidence those problems are not caused by a continuing infection, but by an autoimmune response, in which a person's immune system continues to respond even after the infection is gone.
There is no evidence, they say, that long-term antibiotic therapy helps.
"That idea, I believe, has been to a large extent discredited," said Dr. Justin Radolf, a professor of medicine at the University of Connecticut Health Center and an authority on the Lyme bacterium.
Some doctors treating chronic Lyme disease may be exploiting patients, Radolf said. Others may be swayed by patients who push for a diagnosis of Lyme over one involving no treatment and little hope.
"People grasp at straws," he said, "and Lyme disease is one they like."
That's not to say there are no cases of persistent Lyme infections. However, Radolf said, "We don't believe most people have it who are getting that diagnosis."
But Dr. Raphael Stricker, a San Francisco hematologist and a leading voice in the other camp, regards chronic Lyme disease as a growing public-health issue. Stricker is president of the International Lyme and Associated Diseases Society, which maintains Lyme disease is prevalent across the United States. Among his patients are best-selling author Amy Tan ("The Joy Luck Club"), who has written about her battle with chronic Lyme disease.
The Lyme debate is politically driven on the government's side, Stricker believes. Some people in the infectious-disease community, he said, maintain that acute Lyme disease is easily treatable and chronic Lyme is rare or nonexistent. "And they don't want to admit that they're wrong."
Despite the gulf separating the sides, Martz shies from calling it a controversy, preferring to say it's a complex issue awaiting answers.
"Unresolved is a very good word to describe this."
NUMBER OF CASES
21,273 cases of Lyme disease were reported by 44 states and the District of Columbia in 2003. States with the highest incidence of Lyme included Rhode Island, Pennsylvania, Connecticut and New Jersey. Colorado reported one case in 2002 and none in 2003.