Re: From Dr. B- sad news

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http://archive.easthamptonstar.com/ehquery/990422/news1.htm

April 22, 1999

Fighting Lyme's Nightmare

BY SUSAN ROSENBAUM

A young woman's slowly collapsing nervous system - and the courage to fight

it - are poignantly evident in a small, first-floor motel room at the East

Hampton House on Montauk Highway.

For weeks, the room has been home to Aliza Ashkenasi and her 22-year-old

daughter, Deiby (pronounced Debby), who is taking massive intravenous doses

of antibiotics, along with other medicines for Lyme disease, babesiosis, and

human granulocytic ehrlichiosis, diseases that are carried by ticks.

Dr. ph J. Burrascano of Springs-Fireplace Road, East Hampton, a

specialist in tick-borne ailments, is directing the treatment.

In Connecticut

After what her mother called a nearly six-year " nightmare " in Israel of

changing diagnoses and treatment for illnesses other than Lyme disease,

including multiple sclerosis, Ms. Ashkenasi, a native Israeli, now is

thought to have been bitten by an infected tick in the summer of 1992, while

visiting her grandparents in Fairfield, Conn.

About a month after returning home to Richon l'Zion, half an hour south of

Tel Aviv, the normally happy and active 16-year-old began experiencing

fevers, a sore throat, and general achiness and fatigue.

Today, she is confined to a wheelchair, paralyzed for the most part from the

waist down, and blind.

Internet Search

Connecticut, according to the Federal Centers for Disease Control and

Prevention, has reported this country's second highest number of Lyme cases

after New York, where, last year, more than 4,400 cases were logged, about

20 percent of them in Suffolk County.

After years of worry about his granddaughter's struggle, and hearing of the

possibility that she may have contracted Lyme disease, Ms. Ashkenasi's

step-grandfather in Connecticut, Eli ben Meir, did an Internet search and

found Dr. Inga Dziedzic of Pleasantville, N.Y., an ophthalmologist

specializing in Lyme disease, on the American Lyme Disease Foundation's Web

site. In July 1997, he sought her help.

Back To The U.S.

The foundation, in Somers, N.Y., provides information and emotional support

to those with the illness and their families.

Ms. Ashkenasi's " parents are devastated emotionally and economically, " Mr.

ben Meir wrote in a letter to Dr. Dziedzic. " We feel partially responsible. "

On Dr. Dziedzic's suggestion, Ms. Ashkenasi came to the United States last

September. After seeing her, the ophthalmologist referred her to Dr.

Burrascano, who, 10 years before, " pointed me in the right direction when I

had Lyme, " Dr. Dziedzk said.

Funds Exhausted

To enable Ms. Ashkenasi and her mother to make the trip to this country, Mr.

ben Meir and his wife, Sara, who is Ms. Ashkenasi's grandmother, sold their

house in Fairfield and moved to a small apartment in Bridgeport.

Meanwhile, Dr. Dziedzic's office asked Fairfield's Jewish Center for

Commuity Services to help the family with what had become a crushing

financial burden; over a period of months, its family service agency raised

some $40,000.

As of this week, however, that fund had been exhausted on medical bills and

living expenses.

Last month, ph Oppenheimer of Montauk, president of the Jewish Center of

the Hamptons in East Hampton, sent an appeal to congregants and others on

Ms. Ashkenasi's behalf; as of press time, a spokeswoman said donations of a

little more than $3,000 had been made.

Severe Symptoms

With an unabating commitment to her daughter's eventual recuperation, which

only partially masks her fears, Mrs. Ashkenasi told a reporter of the waves

of pain, extreme fatigue, memory loss, and intensifying paralysis her

daughter has endured, as well as the loss, return, and loss again of her

vision - first in one eye, and then in both.

Early in the illness, Mrs. Ashkenasi explained, inflammation of Ms.

Ashkenasi's optic nerves prompted doctors in Israel to prescribe steroids -

a problematic choice for someone with an infection-causing organism such as

the Lyme spirochete.

Doctors here said this week that steroids can undermine the immune system's

ability to fight disease when it is most needed.

Not Common

Lyme disease can cause dysfunction of the optic nerves, or any cranial

nerves, according to Dr. , chief of epidemiology for Lyme at the

Federal Centers for Disease Control and Prevention in Atlanta. " But it is

not common, " he said.

Dr. Bernard Berger, a Southampton dermatologist with a longtime interest in

the disease, said the Lyme spirochete, Borrelia burgdorferi, has been found

in the iris of some Lyme patients' eyes.

Mrs. Ashkenasi recalled the pain that throbbed inside her daughter's eyes,

numbness in her arms and legs, her bouts of uncontrollable vomiting.

Near Total Paralysis

She described the eight months of injections Ms. Ashkenasi took, in her

stomach and her hands, containing experimental medication her Israeli

doctors hoped would curb what they thought was progressive M.S. The shots,

her mother said, made " no difference " other than to cause her daughter more

pain, and bruises.

She spoke of Ms. Ashkenasi's nearly total paralysis at one point after

almost four years of unsuccessful high-dose steroid treatments. It was when

Ms. Ashkenasi could move only her head - unable to raise her hand to relieve

a constant itching of her skin - that she cried out and said she wanted to

die.

" It was killing me, " her mother said.

Great Imitator

She then told of her relief nearly two years ago, when an Israeli physician

who had spent time in this country reviewed her daughter's chart at Hadassah

Hospital in Jerusalem and suggested that the by-then-longtime diagnosis of

multiple sclerosis might be wrong - that, instead, she might have what many

doctors call the " great imitator of M.S, " Lyme disease.

An ELISA (enzyme-linked immunosorbent assay) test conducted by Igenex

laboratories in Palo Alto, Calif., confirmed his suspicions, Mrs. Ashkenasi

said.

Dr. Burrascano said tests he ran later revealed the presence of the two

other tick-transmitted diseases which, together, can worsen the symptoms

that one alone normally produces.

Never Away

Mrs. Ashkenasi almost never leaves her daughter's side, except to prepare

simple meals in the motel's adjoining kitchen, or to run an errand while Ms.

Ashkenasi spends an hour in a hyperbaric chamber. Immersion in the chamber,

in a facility next door to Dr. Burrascano's office, is believed by some

doctors to enhance a medication's effectiveness. Each daily treatment costs

$250.

The 43-year-old mother of two said she rarely slept through the night,

wakening to ease her daughter's pain when her leg muscles spasm or cramp. It

was clear to an observer how difficult it is for the diminutive woman to

lift her daughter from her wheelchair into a bed, bath, or car.

Her other child, a son, Yaniv, 17, is in Israel with his father, Tuvia

Ashkenasi, who runs a small clothing business there.

Fears Inexperience

Mrs. Ashkenasi said her family's financial situation had been complicated by

their health care insurer, the Maccabee company in Israel, which will not

cover Ms. Ashkenasi's care here.

Indeed, she said, the company, similar to some health maintenance

organizations here, had declined to cover fees for out-of-network second

opinions in Israel and experimental medications.

Insurance company officials have told the family the treatment Ms. Ashkenasi

is receiving now can be had in Israel, in-network. Mrs. Ashkenasi, however,

said she feared doctors there, where Lyme is virtually unknown, were

inexperienced in its complications.

The Costs

She said she pays about $1,000 a week to New Age Homecare, which delivers

intravenous and other medications which she administers to her daughter,

plus about $1,250 a week to Hyperbaric Services of America on

Springs-Fireplace Road.

Calling Ms. Ashkenasi's prognosis " difficult, " Dr. Burrascano said, however,

that he had seen " tremendous improvement " since she began treatment. Though

she cannot move her legs, some sensation has returned, and while she could

not see a camera flash, she says she can occasionally see shadows and some

light.

Her doctor said new test results in about three weeks would reveal more.

No Place To Go

In the meantime, the family's $55-a-day motel room is expected to rise to

$60 on May 1, and, on May 14, Mrs. Ashkenasi and her daughter will have to

move, since the room has been rented for the summer. As of press time, she

had no prospects for a place to live.

As for Ms. Ashkenasi's outlook, " I want to be a writer, " she said this week,

to tell about her experience.

" I also want to learn physical therapy and help others who are disabled, "

she said, smiling.

From Dr. B- sad news

> Dear Friends,

>

> Lyme Disease has claimed the life of another victim. I just heard today

> that Deiby Ashkenazy, the young girl from Israel, died today.

>

> She contracted Lyme as a teenager visiting the USA. Back in Israel, when

> she became ill, she was misdiagnosed. Thinking she had autoimmune

> disease, she was treated repeatedly with steroids and got worse and

> worse. She became encephalopathic, went blind, became paralyzed below

> the waist, then developed arm weakness and bladder and swallowing

> difficulties.

> She finally was diagnosed with Lyme with a variety of positive tests on

> blood, CSF, and urine. Aggressive treatment helped her, but back in

> Israel she could not get this care. Apparently two weeks ago she slipped

> into a coma, and today she died.

>

> Deiby's parents are as strong and caring as Deiby was sweet and

> cheerful. I consider it an honor to have known them all.

>

> Please share with me an offer of our deepest sympathy, and prayers for

> the Ashkenazy's.

>

> Sincerely,

> J.J. Burrascano Jr. M.D.

>