Boston Globe: Sick and tired of being ignored, misdiagnosed

[Guest guest]

What does this sound like? It sounds just like so many of us who are

suffering from exposure to mold. When I read this, I just had to substitute

" mold

exposure " with " ticks " and it is the same story. Why are people given such a

hard time when all they want is a diagnosis and to get well? This is a

horror story.

Mulvey son

THIS STORY HAS BEEN FORMATTED FOR EASY PRINTING

Sick and tired of being ignored, misdiagnosed

Many North Shore families have Lyme disease, and are having a hard time

finding help

By Bella English, Globe Staff  |  June 1, 2005

HAMILTON -- The basket sits like a centerpiece in the middle of a

Gesmundo's dining room table. But instead of spilling over with ivy, it is piled

high

with bottles: antibiotics, antiprotozoans, nutritional supplements, stuff for

the stomach. It is a family basket; everyone knows which medication to take,

and when to take it.

Kriste, 14, runs down the list. ''I'm on a nutritional supplement; zithromax,

an antibiotic; malarone, which is an antiprotozoan; something for my G.I.

[gastrointestinal tract]. " She arrives at the pinkie finger of her right hand

and

frowns. ''And something I can't pronounce. "

Kriste, her four siblings, her mother, and the family dog have all been

diagnosed with Lyme disease, a infectious disease that is caused by microscopic

bacteria carried by deer ticks and that can be difficult to diagnose and treat.

Only the father, Brao, seems untouched by it. He's a pilot for Delta Air

Lines and travels a lot.

''I cannot tell you what has become of our lives, " says Gesmundo, 43, who

practiced law in Boston and Washington before the children came along. These

days, in between doctors' appointments for them all, she sells real estate.

The family is part of a cluster of Lyme disease cases that has infested North

Shore towns such as Hamilton, Wenham, and Ipswich. According to a study

published in the New England Journal of Medicine in 1989, nearly half of the

residents of Argilla Road in Ipswich had been infected with Lyme disease.

Dr. Alfred De Jr., the chief medical officer for the state Department of

Public Health, held a public hearing in March at Ipswich Town Hall. The forum

was called by state Representative Brad Hill of Ipswich, who said he grew

concerned after a large number of constituents complained that doctors and state

health officials were ignoring the disease. They want more aggressive

diagnosis and treatment. They want more public awareness and education. So many

people

came to testify -- many of them sporting intravenous antibiotic lines -- that

the meeting was moved to a larger space. Still, it was standing room only.

One by one, they cited instances of misdiagnoses, of doctors who told them to

go home and take aspirin, of having to go out of state and pay out of pocket

for what they call ''Lyme literate " doctors. They told of children who were

incorrectly diagnosed with mononucleosis, attention deficit disorder, and

learning disabilities. One woman said almost every family on her street had

someone

infected with tick-borne Lyme. Another described her husband, who went

undiagnosed for too long. ''He was an executive, and he could no longer find his

way

to the gas station, " she said. One family said it spends $2,800 a month in

antibiotics.

As they tossed off words like ''pathogens, " ''spirochetes, " ''co-infections, "

''Western Blot tests, " and ''PIC lines, " it became clear that those

testifying were more than casually acquainted with Lyme disease. Nearly all of

them

criticized Massachusetts doctors for failing to test for, diagnose, and treat

Lyme and said they rely on doctors in Connecticut and New York for treatment --

though Boston boasts some of the world's best hospitals.

Lyme disease remains a controversial, clinical diagnosis, with false

negatives and false positives, dozens of physical and neurological symptoms, and

a

penchant for mimicking other maladies such as fibromyalgia, Parkinson's disease,

arthritis, multiple sclerosis, and Lou Gehrig's disease. Though some people

develop a bull's-eye rash after being bitten by a tick, many do not.

Complicating matters is the issue of co-infection -- many of those with Lyme

also suffer

from other tick-borne illnesses such as babesiosis, ehrlichiosis, and

bartonella.

De acknowledges that Lyme disease is a ''huge problem " in Massachusetts,

one of the most prevalent infectious diseases, and one of the most

underdiagnosed. ''Ticks are everywhere, " he told the crowd. ''Lyme disease is

everywhere. We know it's getting worse and worse, and there are significant

problems in

diagnosing, preventing, and treating. "

Diagnosis frustration

a Gesmundo knows it all by heart: the rashes, ear infections, headaches,

stomach and joint pain, the fatigue, fevers, rashes, cognitive and mood

issues. Her sons , 12, and , 8, had brain scans at Children's Hospital

in

March that revealed inflammation and blood deprivation because of bacteria

caused by Lyme disease. suffers debilitating migraines along with mood

swings. Last year he began having problems with simple homework that was usually

a

snap for him. Sometimes he comes home from school and takes a four-hour nap.

has periodic tremors and some cognitive problems. Both he and his

brother , 9, go to the school nurse every day for a dietary supplement to

ease their stomachaches.

Though it took several tries to get a doctor to diagnose and treat her

family's Lyme disease, their dog fared better. Resy, a year-old German shepherd,

was

diagnosed by the vet in short order and put on an antibiotic.

All of the children had serious vomiting and reflux issues at birth, and

Gesmundo wonders whether she passed along Lyme disease in utero. Looking back,

she

can see her own symptoms as a teenager; she wonders, too, whether Lyme is

responsible for her four miscarriages, but her doctors at the time failed to

test

her. Still, each of her children has been bitten by ticks on the North Shore,

where Lyme and the insects are endemic. Gesmundo believes she and her

children have been reinfected by subsequent tick bites.

Various doctors told her that her children had arthritis or mono -- one even

suggested ''growing pains " -- and prescribed aspirin. When they finally were

diagnosed with Lyme, she said, they were put on antibiotics for two weeks. The

symptoms faded but returned, worse, when treatment stopped. One son had

enlarged lymph nodes, night sweats, insomnia, nausea, and periodic loss of

vision.

So worried were Gesmundo and her husband that they moved him into their bedroom

so they could monitor him at night.

Finally she learned of a ''Lyme literate " doctor in New Haven. ''He listened

to me, and he listened to my son. He took more sensitive tests. " Those with

Lyme disease call him a saint; to doctors who believe the disease is

overdiagnosed and overtreated, he is, in his own words, ''the great Satan. "

Dr. Ray , 76, has more than 7,000 pediatric Lyme cases from

every state and country in the world, including 400 families from Massachusetts,

he says. He believes the federal guidelines for Lyme disease are too rigid and

finds the test favored by many doctors to be unreliable. His preferred

treatment is to keep a child on antibiotics for at least two months after all

symptoms have disappeared -- in extreme cases, this can mean years of treatment.

''Lyme is very, very complex, " he says. ''It's a horrible disease to have,

and it's a challenging disease to treat. "

On the other side of the bitter Lyme debate is the Centers for Disease

Control and Prevention, the National Institutes of Health, and many doctors and

insurance companies who believe in a standard set of symptoms and treatment,

which

includes a shorter course of antibiotics. Doctors in this camp say long-term

use of antibiotics can be dangerous.

Dr. Steere, widely considered the guru of Lyme disease -- he identified

and named the disease for the Connecticut town where it was discovered in the

mid-'70s -- is a particular target of the patients who seek ''Lyme literate "

doctors. Steere, director of rheumatology at Massachusetts General Hospital,

has written and lectured extensively about Lyme. He and other doctors have said

the disease is overdiagnosed and overtreated. He favors a short course of

antibiotics, and Lyme patients and advocates feel his position has influenced

other doctors and encouraged insurance companies to curtail payment for

long-term

treatment. Steere, who has been stalked and hectored by Lyme patients,

declined to be interviewed by the Globe.

Many patients interviewed by the Globe say their insurance companies make

them pay large deductibles before out-of-network benefits kick in -- if they

kick

in at all. Blue Cross and Blue Shield of Massachusetts, for instance,

provides full coverage for treatment of Lyme disease by network providers. But

some

people pay a higher rate for out-of-network coverage, while others have no such

coverage.

'It's not a mystery'

Gesmundo says that once she found her way to ''Lyme literate " doctors, her

family began to improve, bit by bit. She and her kids also see Dr. Bernard

Raxlen in Stamford, Conn., a three-hour-plus drive from their house. Raxlen says

he

has treated more than 3,000 Lyme cases in the past 15 years, many from out of

state. ''Tell me why Boston and New York, two megacenters of medicine, have

patients who come here to Connecticut to see me, a neuropsychiatrist in

Stamford. I'm puzzled as to why Lyme continues to be such a controversy. You

observe

the patient, you treat the patient, the patient improves, you've done your

job. It's not a mystery. "

Raxlen also notes the irony of doctors who will treat acne for months or even

years with antibiotics. ''They don't blink an eye. But God forbid you do that

for Lyme for even three months; you're ready to be tarred and feathered. "

Gesmundo reckons she pays $2,000 a month in prescriptions, supplements,

tests, and office visits for various doctors that her insurance will not cover.

For

their part, insurance companies say that the medical establishment does not

agree on whether long-term treatment is warranted, or even safe.

''This is a physically and financially devastating disease, " says Gesmundo,

who attends a monthly Lyme disease support group in Danvers. ''I have to pick

and choose which kids get treatment. "

So worried was she about her children that she tended to ignore her own

symptoms. But last fall, when she began having high blood pressure, headaches,

hives, ear and chest pains, vertigo, fatigue, and memory loss, she requested

another Lyme test (two previous ones had come out negative). ''The third test

revealed a raging case of Lyme disease that the doctor said I'd had two or three

years. " After two days on an antibiotic, she was much improved, and she has

remained on an ''antibiotic cocktail " since then.

Progress has been slower for her children, who have co-infections that often

come with Lyme. ''I am looking for a quality of life that allows my kids to

achieve in school or in athletics and relationships and other important facets

of life. But having said all of that, they're still sick. "

Just the other day, Gesmundo's daughter Delilah, 6, was bitten by a tick

again. Her father removed the insect shortly after she came indoors, and it

was not deeply embedded. ''Spring, " says her mother, ''makes me nervous. "  

© Copyright 2005 The New York Times Company

 

[Guest guest]

They AREN'T aren't that different from us. And neither are the people with Gulf

War Illness, nor those with MS or fish-toxin illnesses, or a half-dozen of the

other usual suspects. For all we can tell, they ARE us. I've wondered myself how

these docs really tell the difference, should they bother to look. The Lyme

tests in use being so frequently wrong or inconclusive, they make a clinical

diagnosis, based on the symptoms and using medical histories that don't even ask

about exposures to other toxins. Is the difference between Lyme and mold-related

illness only that you live in Connecticut or Massachusetts? And then, what if

you have Lyme AND one of the others? If they aren't using a proper medical

history and the right tests (and I mainly mean the HLA testing), then the

people really are screaming bloody murder about being sick with....ohhhh,

something-or-other.

Too bad obesity is the declared Disease of the Decade. SARS may be out of the

running for now, though the photo ops were tasty. The fashion piece CDC Director

Gerberding did in China for Vogue was just....you think I'm kidding, don't

you. Wrong. That ACTUALLY happened! West Nile hasn't been nearly the vast plague

they hoped for. Those two have gone the way of the African Killer Bees.

(Remember those guys? They were coming to get you!) But Bird Flu seems to be

waiting in the wings (yeah - bad bird flu joke. Sue me.) If these folks're

waiting for the insurance companies and the Dept of Health and Human Services to

figure this thing out, they're gonna wait a long, long time. We'll be talking

about the effects of Geriatric Lyme before they get the drift.

Man, we have a LOT of work ahead of us!

Serena

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