10 Year Battle with Pain Highlights Lyme Disease Debate

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_http://www.cnn.com/2008/HEALTH/conditions/07/06/lymedisease.treatment/_

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10-year battle with pain highlights Lyme disease debate

* Story Highlights

* Mandy says she suffered from Lyme disease effects for more

than 10 years

* featured in documentary that questions disease treatment

guidelines

* There's a debate over whether the disease symptoms are mistaken for

the disease

By Ronni Berke

CNN

NEW YORK -- For more than 10 years, Mandy drifted in an out of what

she calls the horrible, debilitating pain of Lyme disease.

Mandy says the pain she suffered for more than 10 years was due to

Lyme disease

" It literally feels like you got into a severe accident, like you were hit

by a Mack truck and you were allowed no medical attention, " she says.

After being bitten by a tick at 19, broke out in hives and suffered

fever and chills so severe that she had to be hospitalized. She was diagnosed

with _Lyme disease_ (http://topics.cnn.com/topics/Lyme_Disease) and was sent

home with two weeks' worth of the antibiotic tetracycline. She seemed to be

cured.

But over the years, the Lyme symptoms flared back -- crippling joint pain,

muscle spasms, headaches and facial paralysis. She visited 15 doctors, yet

they were unable to arrive at a diagnosis. Several thought she had multiple

sclerosis. Others knew she was sick but didn't know why. Lyme had been ruled

out.

" Maybe it's psychological -- we don't really have an explanation, " they told

. " Your tests are coming back fine, Mandy. " _Watch a report on a

10-year battle with Lyme disease symptoms »_

(http://www.cnn.com/2008/HEALTH/conditions/07/06/lymedisease.treatment/#cnnSTCVi\

deo)

The memory of one doctor's visit stays with her to this day. She went to see

him with joint pain so severe, she said, her hands were curled into a

palsy-like position. Yet the doctor seemed impatient with her.

" You're obviously an attractive woman, and you're just trying to get

attention, " she recalls him saying.

Lyme disease debate

See how one woman's case and a new documentary are spurring debate over

treament of Lyme disease

Monday, 6 a.m. ET

_see full schedule » _ (http://www.cnn.com/CNN/Programs/american.morning/)

In 2005, went to see what some patients refer to as a " Lyme-literate "

doctor -- one willing to diagnose chronic Lyme disease and prescribe a

long-term regimen of intravenous as well as oral antibiotics.

Within three months, she began to feel better. After 15 months, she was back

on her feet, but had to abruptly halt treatment when her doctor was sued by

an insurance company and stopped seeing patients.

' story is featured in a new documentary called " Under Our Skin, "

which takes a look at the leaders of the Infectious Diseases Society of

America,

a national medical group that represents health care professionals who

specialize in infectious diseases. The society's purpose, according to its Web

site, is to improve health care in areas related to such diseases.

In particular, the documentary takes aim at the 14-member panel that wrote

the 2006 Lyme disease treatment guidelines, which question the existence of

chronic Lyme disease and claim that the post-treatment symptoms of some

patients appear to be " more related to the aches and pains of daily living

rather

than to either Lyme disease or a tickborne coinfection. "

The guidelines list specific criteria for diagnosing Lyme -- such as an

obvious tick bite, a characteristic bull's-eye rash at the site of the bite,

facial paralysis and a positive blood test.

Don't Miss

* _Investigation into Lyme disease guidelines_

(http://www.ct.gov/ag/cwp/view.asp?A=2795 & Q=414284)

* _IDSA on Lyme disease investigation_

(http://www.idsociety.org/Content.aspx?id=11182)

Yet some Lyme specialists say many patients experiencing symptoms do not see

or remember a tick bite. Only 70 to 80 percent get the rash at all,

according to the Centers for Disease Control and Prevention.

The longer the disease goes undiagnosed, the harder it is to treat, some

doctors say.

" The disability associated with Lyme disease is worse than the disability

that you might see with someone after a heart attack, " said Fallon,

director of the Lyme and Tick-Borne Diseases Research Center at Columbia

University Medical Center in New York.

Patient advocates criticize the IDSA for recommending no more than a month's

worth of antibiotics to treat Lyme. They say insurance companies use the

guidelines to deny payment for long-term antibiotic therapy.

But the IDSA says there are inherent risks from such treatment, including

localized infection from the IV line and the creation of antibiotic-resistant

bacteria.

One IDSA critic, Connecticut Attorney General Blumenthal, conducted

an antitrust investigation of the guideline process, saying the panel ignored

or minimized other medical opinions regarding chronic Lyme disease.

Blumenthal said the process was tainted by conflict of interest because members

of

the panel consulted for insurance companies and at least one had a patent for a

Lyme disease treatment.

Wormser, chief of infectious diseases at New York Medical College and

one of the guidelines' authors, denies those allegations, calling them

" preposterous. "

" What we did recommend was not treating with unsafe or prolonged courses of

antibiotic therapy, " Wormser said.

In a settlement with Blumenthal, the IDSA agreed to reassess its 2006

guidelines with the assistance of an outside arbiter.

The heart of the debate is whether patients actually have Lyme disease, or

simply symptoms that are mistaken for Lyme disease.

" The problem is that the majority of patients that carry the diagnosis of

chronic Lyme disease actually have the same kinds of symptoms: fatigue,

musculoskeletal pain, sometimes brain fog. ... The majority of such patients

actually don't have any evidence of ever having had Lyme disease. " Wormser

said.

There's a lot at stake. The CDC reports approximately 20,000 new cases of

Lyme disease a year, with the number doubling from 1991 to 2005. Factoring in

underreported cases, the CDC says the actual number could be three to 10 times

higher.

" We have an epidemic of Lyme disease, " said Cameron, president of the

International Lyme and Associated Diseases Society, which rejects the IDSA

guidelines and says the chronic form of the disease may be prevalent in up to

62 percent of the population in areas where Lyme disease is endemic.

Fallon says standard blood tests fail to detect the Lyme infection in 20 to

30 percent of patients.

" Most reasonable academic physicians throughout the United States would

acknowledge that there's a large number of patients out there who do have

chronic, persistent symptoms. The question is, why do they have those

symptoms? " he

says.

Coughlan

President

MA Lyme & Tick-Borne Disease Awareness Assoc.

Mashpee, MA

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