Alternative treatment gives patient a chance at a pain-free life - New Haven Register-CT

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03/06/2005

Alternative treatment gives patient a chance at a pain-free life

Gannon , Register Staff

Alice Levitt has Lyme disease, which crippled her ability to live a

normal life.

Antibiotics worked for a while to treat the infection.

After a time, though, her symptoms returned, so her doctor referred

her to Dr. Amiram Katz of Orange.

Katz, an assistant clinical professor in neurology at the Yale

School of Medicine, uses an experimental and controversial treatment called

intravenous immunoglobulin, a protein taken from blood, which is injected into

the patient over several months' time.

Levitt, a former resident of Greenwich who now lives in Essex, Vt.,

agreed to try the treatment.

" He is a pioneer for me, " she said. " I used to get seizures every

day, sometimes more than one. I took IVIG two days a month for six months. I

haven't had a seizure since the first two-day treatment. "

The general consensus of the medical community is that Lyme disease,

when caught early, can be treated with antibiotics over a few weeks.

After that, opinions diverge.

The bacteria is spread by deer ticks and was first named in 1977

after arthritis-like cases turned up in children in the costal town of Lyme.

Some in the medical community believe cases that don't respond to

antibiotics have been undiagnosed or misdiagnosed, sometimes for years.

Many experts also believe that so-called " chronic " Lyme disease is

not Lyme at all, but one or more co-infections that are capable of being

delivered by tick bites.

Katz himself calls the treatment experimental. He believes an

article he is working on for publication in a medical journal would be one of

the first to address the topic, but he rejects the idea that he's a pioneer.

" It doesn't treat Lyme disease, " Katz said. " It's treatment of the

autoimmune consequences of the infection. There are some symptoms that develop

after (the onset of) Lyme disease that are not improved by antibiotic treatment.

And the physiological mechanism behind the disorders is thought to be

autoimmune. "

Katz said the disease leads the body to create antibodies that

sometimes attack its own tissues instead of the bacteria causing the disease.

Katz believes that immunoglobulin helps in cases where the central nervous

system comes under attack.

He said doctors noticed several years ago that some of the

neurological symptoms, such as violent twitching, resembled those that resulted

from rheumatic fever. He said doctors in New York decided to use a similar

treatment.

Katz said he has seven patients who he says have responded to

treatment with varying degrees of success. He said some have required booster

treatments but most have been able to stay symptom-free.

Information on Lyme disease treatment provided by the National

Institutes of Health, the Centers For Disease Control and the Infectious

Diseases Society of America all back the use of two to four weeks of antibiotics

but do not recommend treatment for those with ongoing chronic symptoms.

Contacted by e-mail, Dr. Eugene Shapiro, a professor of pediatrics

and infectious diseases at the Yale School of Medicine, did not endorse the

treatment.

" As far as I know, there is no scientific evidence of any benefit

from IV immunoglobulin in this setting, " Shapiro responded.

Numerous sources said the Lyme disease bacteria can be difficult to

detect, since it can hide in various places in the body and has symptoms that

can mimic other illnesses.

Levitt said she still worries that the disease could be sitting

dormant inside her, though the ability of the organism to remain dormant is

subject to debate in the medical community.

" I moved to Vermont to get away from Lyme disease, " she said. " The

'Lyme line' is at (the city of) Rutland. But every time I get tired I think I'm

getting sick again. "

Picard, 17, of North Branford, believes she contracted Lyme

disease at birth from her mother, who had been infected for years.

Picard is not one of Katz's patients and was treated successfully

with antibiotics. But she volunteers with Live With Lyme, an organization the

doctor helped establish two years ago to raise awareness of the disease and

money for patients who have trouble affording treatment.

" I always had migraines, joint pain and memory problems, " said

Picard, a senior at Sacred Heart Academy in Hamden. " I just thought they were

annoyances, because I didn't have a severe case. "

The foundation was set up by Katz and nurse practitioner Janet

Beckley. helped with the paperwork to form a nonprofit organization and

helped set up their Web site www.livewithlyme.org.

As part of her informational campaign, Picard has spoken to

insurance companies, which often won't pay for IVIG treatment. She also has

spoken to many students at Sacred Heart, where one of her fund-raising ideas has

caught fire.

She is seldom in the halls of the school without at least a few

lime-green Live with Lyme bracelets, modeled after those sold by Lance

Armstrong's Livestrong Foundation. They sell for $5 each.

" Right now, (the bracelets) are a fad, " she acknowledged. " But back

in September we sold 2,000 of them in two weeks. I can't believe the number of

people who come up to me and say they know someone who has it (Lyme disease). "

The illness has not kept her from excelling in the school's

demanding academic regimen, or with Sacred Heart's softball and volleyball

teams.

Picard said she had the desire to become a surgeon long before she

knew she would have health issues to confront. And the pre-med applications

already have gone out.

" I'm hoping for town or Brown, " she said.

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Gannon can be reached at mgannon@... or at

789-5710.

ALTERNATIVE THERAPIES

Antibiotics are the medically accepted treatment for Lyme disease,

but there are numerous alternative therapies gaining popularity. Many are

experimental and a patient should always check with their physician first.

. Fish oil, magnesium supplements, ginkgo herb, Chinese herbal

formulas

. Chiropractic care

. Homeopathic treatment

. Accupuncture

. Massage

. Bee venom therapy

. Hyperbaric chamber therapy

Source: U. of land