Sunday, October 10, 2010

Two Sides of a Disease

Two sides of a disease
By Amanda Korman, Berkshire Eagle Staff
Updated: 10/10/2010 07:40:00 AM EDT

Sunday October 10, 2010

NEW LEBANON, N.Y. -- The problems hit her in April of last year:
severe fatigue, headaches, nausea, fevers, insomnia.

Seventh-grader Victoria Lehtonen went to her primary-care doctor and
was prescribed a short course of antibiotics, but once the medication
was used up, her symptoms returned.

Victoria proceeded to doctor after doctor with her mother, Karla, but
was diagnosed with "post-infectious fatigue syndrome" and was sent
home, still suffering.

Since several of Victoria's friends had been diagnosed with Lyme
disease after they were playing in the woods together, Karla believed
Victoria had Lyme too, even though Victoria's doctors thought
differently because she had tested negative for the disease and did
not exhibit tell-tale signs such as partial facial paralysis or a
bull's-eye rash.

Karla, who was working on her nursing degree and a master's in
biomedical sciences, started doing her own research on the illness.

"I realized she wasn't post-infectious. ... She was still running a low-grade fever, still heading into bed for days at a time," her mother said. "To me she showed signs of an active infection that was undiagnosed."

Victoria eventually tested positive for Lyme and several related
infections and has undergone treatment with doctors outside of the

A year and a half after her pain began, many of Victoria's most
debilitating symptoms have improved. But the New Lebanon resident, now
13, still suffers from frequent fatigue, hasn't been able to return to
school at Berkshire Country Day in Lenox, and is being home-tutored
for two hours a day by the New Lebanon Central School District.
"I'm really tired," she said on a recent rainy afternoon. "There's no oomph."

Because of the difficulty of Victoria's case, the Lehtonens have found
themselves in the middle of a controversy about the proper diagnosis
and treatment of Lyme, an infectious disease transmitted by ticks that
feed on deer and small rodents.

Difficult to sort out'

Disagreements about the effectiveness of tests for Lyme disease and
the existence of chronic Lyme have calcified into two camps that often
are bitterly opposed.

On one side is the Infectious Disease Society of America (IDSA), a
group that puts out Lyme treatment guidelines widely referred to by
physicians. The guidelines suggest treating only in the presence of
objective symptoms and do not advise antibiotic treatment for more
than four weeks, even if symptoms persist.

On the other side are a growing number of medical professionals and
laypeople who refer to themselves as "Lyme literate" and are
associated with the International Lyme and Associated Diseases Society

ILADS has published alternative guidelines that suggest Lyme can be
diagnosed from more subjective symptoms, and that a longer course of
antibiotics may be necessary to help battle what they refer to as
chronic Lyme.

Dr. Paula Aucoin, an infectious disease specialist who works at the
Berkshire Medical Group in Pittsfield, said she is an advocate of the
newest recommendations from the IDSA.

She said there is no scientific evidence that ongoing symptoms after a
maximum of four weeks of antibiotics are attributable to Lyme disease,
of which the number of reported cases in Berkshire County has more
than doubled since 2000.

"There is a subset of patients, probably a lot smaller subset than
you'd get from reading literature, that have longstanding symptoms
that are probably not due to Lyme disease," she said. "But it can be
very difficult to sort out how much Lyme is contributing, and how much
[it's] chronic fatigue or post-infection."

To patients with long-term symptoms that have no other discernible
source, Aucoin recommends pursuing treatment for improving the
symptoms. For example, if a patient suffers from chronic insomnia,
there are medications that can help alleviate trouble sleeping.

Aucoin said a diagnosis of "chronic fatigue" or "post-infection" can
be disheartening, but she said she doesn't believe there is a "chronic
Lyme" or that a prescription for long-term antibiotics is helpful.

"It would be a lot simpler to give 12 months of antibiotics, but I
don't think that's effective," she said.

Aucoin said she has seen significant toxicity and infection from
long-term access catheters that administer the antibiotic --
Doxycycline, for instance -- as well as side effects from the
antibiotics themselves. There also is a concern for the development of
antibiotic-resistant bacteria.

Some patients improve, but some, uncommonly, become chronically
disabled, she said. "And that's why people look hard for alternatives,
and why people are drawn to Lyme disease specialists who feel very
strongly that they're offering benefit."

Seeking outside help

The Lehtonens said they could not find a doctor in Columbia or
Berkshire counties who would treat Victoria for Lyme based on the
ILADS guidelines, which say the disease can be diagnosed clinically
instead of by a set of objective symptoms.

Aware that Lyme left untreated can result in more severe symptoms,
Karla made an appointment with Dr. Kenneth Liegner, a Lyme specialist
in Westchester County, N.Y.

Liegner, an internist, has fought for Lyme disease treatment reform
since the early 1990s and has called the IDSA's standard of care
"medical neglect."

"When I first started treating, I treated by the book, but it became
very clear those regiments weren't working," Liegner said. "It was a
gradual process from observing my patients that it began to dawn on me
that the treatment we were giving wasn't treating the infection."

Liegner said he treats many patients like Victoria, who come to him
after being refused treatment by other doctors.

Like some other high-profile doctors who treat for chronic Lyme,
Liegner has come under criticism for his practices; in 2000 the New
York Office of Professional Medical Conduct initiated an investigation
of him and other doctors for their treatment practices, but no action
was taken.

"This has not been a field for the faint of heart," Liegner said. "But
on the other hand, it's very rewarding and gratifying to help these
people who have no place to turn."

New laws

The climate of the Lyme debate has begun to shift in the Northeast and
elsewhere. Legal action against "Lyme literate" doctors such as
Liegner has come under fire, resulting in laws protecting their right
to treat patients via the alternative guidelines.

Gov. Deval Patrick recently signed into law a protection for
Massachusetts doctors to treat Lyme disease with antibiotics for
longer than the four weeks recommended by the IDSA. California,
Connecticut and Rhode Island all have recently passed similar laws.

The Massachusetts legislation, which went into effect July 1, allows
doctors to diagnose Lyme when it presents "other acute and chronic
signs of symptoms of Lyme disease as determined by the treating
physician," even if the illness doesn't present itself along the
criteria of the national Centers for Disease Control and Prevention.

This new legislation comes at a time when Massachusetts is seeing an
increase in the disease. Statewide, there were more than three times
as many cases reported in 2009 than in 2000, according to the
Massachusetts Department of Public Health. Lyme disease cases in
Berkshire County rose from 51 in 2000 to 105 in 2009.

In Columbia County, N.Y., an area known for its high incidence of the
disease, numbers are on the downturn, although still high. A total of
357 cases were reported in 2009, compared with 595 in 2000.

In Columbia County, N.Y., an area known for its high incidence of the
disease, numbers are on the downturn, although still high. A total of
357 cases were reported in 2009, compared with 595 in 2000.

Columbia County's population is about half of Berkshire County's, and
some have attributed the high rate of Lyme to a large deer population.

57 pills a day

While health officials in Columbia County are happy about the lower
incidence of Lyme, Victoria Lehtonen doesn't get to share in the good
news -- she's bored with only being able to play computer games and
lie around.

Simply put, she's tired of being tired.

Victoria is now seeing a doctor in Florida who studies Bartonella and
Babesiosis, lesser-known infections related to Lyme disease.

Victoria takes 57 pills a day, including numerous supplements, Chinese
herbals, antimalarials, antibiotics and probiotics.

"She's on higher doses of almost every supplement," Karla said.
"Normally she'd be taking a Flintstone."

But things are getting better. Victoria now lives in a way that was
out of the question a year ago. She can hang out with friends or go to
salsa lessons, even if she can dance for only 15 minutes before
feeling so worn down that she has to quit.

And as the medical community works through how to solve cases such as
hers, she's also waiting.

"I just want them to figure it out," she said. "I want it to just go away."

To reach Amanda Korman:
[email protected]

(413) 496-6243
Lyme disease at a glance


Lyme is the most common tick-borne illness in North America and
Europe. The disease derives its name from Lyme, Conn., where the full
spectrum of the illness was first described in 1975.


There are significant disagreements about the diagnosis and treatment
of Lyme disease:

Infectious Disease Society of America (IDSA): "The great majority" of
people with Lyme develop a bull's-eye rash.

International Lyme and Associated Diseases Society (ILADS): Fewer than
50 percent of people with Lyme will recall a rash.


IDSA: 95 percent of people treated early with 10 to 28 days of oral
antibiotics are cured.

ILADS: There is more than a 40 percent relapse rate in patients
treated with a short course of antibiotics.

IDSA: People who continue to have symptoms after the short course of
antibiotics likely:

Never had Lyme.

Had another infection simultaneously and were treated only for Lyme.

Have contracted a new illness unrelated to but with similar symptoms to Lyme.

Have again been bitten by a tick carrying Lyme.

ILADS: Persistent symptoms likely are caused by an ongoing Lyme infection.


IDSA: Long-term antibiotic therapy may be dangerous.

ILADS: The consequences of untreated chronic Lyme outweigh potential
consequences of long-term antibiotic therapy.


Sources: IDSA, ILADS, Mayo Clinic
* * *
This is the thing that doesn't register with some people who discount CFS -- if you're running a persistent low-grade fever, you have an infection of some sort.  It's not psychiatric.

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