Chronic Lyme disease debate: Common ailment or false hope?

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Chronic Lyme disease debate: Common ailment or false hope?

By BILL RADFORD - THE GAZETTE

February 19, 2006

Like the flu, it hit hard and fast.

But Dr. 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 — 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. 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 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. 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.

TREATING OTHERS

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.

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 — 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 '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.

DISPUTED DIAGNOSIS

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. 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.

TO LEARN MORE

- Rocky Mountain Chronic Disease Specialists, Dr.

Martz, 3010 N. Circle Drive, Suite 110. Phone: 264-1500.

- American Lyme Disease Foundation, www.aldf.com.

- " Learn About Lyme Disease, " Centers for Disease Control

and Prevention, www.cdc. gov/ncidod/dvbid/lyme.

- International Lyme and Associated Diseases Society, www.

ilads.org. Phone: 1-301-263-1080.

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