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Alyssa Mori bit by politics of Lyme Disease

Mirrored here for historical purposes from: http://www.svcn.com/archives/almadenresident/20080131/news1.shtml and http://mytown.mercurynews.com/archives/almadenresident/20080131/news1.shtml

Alyssa Mori bit by politics of Lyme Disease
Kaiser refuses to treat, family pays

By Emilie Crofton – January 31, 2008
The Almaden Valley teen, now 14, spends the majority of her time at home in bed. Her body and joints ache.
She struggles with her concentration, and that has impacted her ability to attend Leland High School as a freshman.
Life has become an emotional and physical nightmare, because of a bug the size of a poppy seed.

Alyssa was diagnosed with Lyme Disease, a non-contagious bacterial infection principally transmitted by ticks.

The Mori family is not sure where Alyssa was bitten. An active girl, Alyssa had spent time in Santa Cruz, Yosemite
and Almaden Quicksilver County Park, which the family says coincides with the time they think she was bitten.

Alyssa says she remembers scratching off a poppy-seed sized bug at a softball tournament in Lake Tahoe in late
June 2006. She thought nothing of it because no rash appeared in the days that followed. The week after Labor
Day, Alyssa got very sick with flu-like symptoms.

“It was just a rapid deterioration of her health. The doctors didn’t know what it was,” says Debby Mori, Alyssa’s
mother. “She wasn’t herself. This was a former athlete who now couldn’t even walk to the end of our driveway and back.”

Lyme disease is a tough to diagnose. The symptoms and lab results vary from patient to patient, making Lyme
and other tick-borne diseases hard to detect.

There are also contradictory points of view in the medical community about the disease.

Alyssa saw several doctors at Kaiser Permanente San Jose/Santa Teresa Medical Center, the family’s medical
provider. She was given the EIA, which is similar to the ELISA test, a blood test commonly used to diagnose
Lyme disease, but the results came back negative, and she did not have the bulls-eye rash that is common
after being bit by an infected tick. Because the lab test came back negative, Kaiser refused to acknowledge
that Alyssa had contracted the disease.

One Kaiser doctor denied the existence of Lyme disease in California, and two Kaiser doctors suggested
Alyssa was just depressed, Debby Mori says.

After Kaiser stated that Alyssa’s health problems were not due to Lyme disease, the Moris pursued other
channels, knowing in their hearts that something else was causing their daughter’s medical condition.
Something was wrong, and they were determined to find the cause.

The couple sought help from doctors outside their Kaiser health plan, which meant all the medical expenses
would come out of pocket.

“She’s missing her childhood,” Mori says. “It’s a very political disease, and it’s sad because it’s the patients
that suffer the most from it.”

The family found a doctor who looked beyond the negative EIA lab result and diagnosed her clinically,
examining her symptoms, medical history and lab tests.

When Alyssa’s Western Blot and Ehrlichiosis tests came back positive, her outside doctor diagnosed
her with Lyme disease, 5 1/2 months after Alyssa thinks she was bitten.

Now, with the help of antibiotics, Alyssa is slowly on the road to recovery, her parents say. However, Lyme
disease can be more difficult to treat as time passes, according to the medical community.

The family continues to pay the medical bills out of their pocket 1 1/2 years later, which they say can reach
into the thousands of dollars.

“It sucks. I want them to know that the ELISA test can be a false diagnosis,” Alyssa says. “I just wanted to
be normal and have my life back.”

Kaiser Permanente would not comment on Alyssa’s specific situation citing patient privacy rights. However,
Kaiser Permanente spokesman Karl Sonkin said in a written statement, “We screen blood for Lyme
disease using the extremely sensitive EIA. If the EIA is either positive or equivocal, then a standardized
Western immunoblot assay is run as a confirmatory test to detect Lyme proteins. The Western Blot
results are interpreted using CDC criteria.”

However, even after an outside Western Blot test confirmed that Alyssa had Lyme disease, Kaiser
doctors still did not trust the results produced by IGeneX, the lab that tested Alyssa. In addition, Kaiser
claims this lab has a history of false positive results.

Sonkin says Kaiser Permanente’s school of thought is base on the Infectious Disease Society of America
and the Centers for Disease Control and Prevention guidelines in the diagnosis and treatment of Lyme
disease.

Health and politics

The conflicting views on Lyme Disease are expressed by the Infectious Diseases Society of America (IDSA)
and the International Lyme and Associated Disease Society (ILADS).

“You have two medical organizations that have diametrically opposed viewpoints,” said Raj Patel, a doctor
practicing in Los Altos. “Both parties have scientific data to back their views.”

The IDSA believes that with the presence of the bulls-eye skin rash and positive lab tests, Lyme Disease is
easy to diagnose and can be treated quickly within 10 to 28 days with oral antibiotics, according to Steve
Baragona, spokesman for the IDSA.

According to the ILADS point of view, less than 50 percent of patients with Lyme Disease develop a rash or
test positive with the ELISA test. Their approach places more emphasis on clinical judgments. The diagnosis
is not based solely on the ELISA test or a rash, but on the patient’s symptoms and medical history. The
organization espouses that patients can sometimes require treatment for one to four years before they are
symptom-free.

“There’s so much attention paid to the rash, doctors aren’t hearing about how to diagnose Lyme when they’re
presented with other problems like fatigue, joint pain, sleep issues and poor memory,” says Daniel Cameron,
doctor and president of ILADS. “We have to allow doctors to be more comfortable diagnosing Lyme. The
antibiotics work best when the disease is recognized early.”

The Mori family agrees with ILADS views and this approach to eliminate the disease from her daughter’s body.
The Moris saw significant improvement in Alyssa during her time on antibiotics.

“She was doing so well on the antibiotics that doctors thought she was better and took her off. Within two weeks
she had a major relapse and all her symptoms came back,” her mother says. “When the doctors put her back
on the antibiotics, she started feeling better again within two months.”

Alyssa says the antibiotics–which vary per patient and stage of the disease–definitely help her. The antibiotics
can include treatment with doxycycline, amoxicillin and erythromycin. Alyssa wants people to understand that
Lyme disease is a serious illness that can require a lengthy recovery time.

“With the antibiotics I can read, my joints don’t ache and I sleep better. I don’t understand why people ignore
this. Ignoring it won’t make it go away, you’ll only pay the price,” says Alyssa referring to the doctors that don’t
believe she has contracted the disease. “Lyme disease can happen here in California. It can happen here in
Almaden.”

Better education

Parents and families throughout the South Bay are going through a similar plight. Several mothers have
formed a support group and meet to talk about hardships they confront when a loved one has Lyme Disease.

West San Jose resident Lesley Tsai’s 13-year old daughter April has been battling Lyme Disease for six years.
The Tsai family, like the Moris, is unsure exactly when April was bitten, but they believe it occurred while the
family was hiking on the Almaden Quicksilver County Park trails.

It took 1 1/2 years of doctors and tests before April was diagnosed.

“It is hard to diagnose because there are so many different symptoms, but it shouldn’t be diagnosed solely on
a lab test,” Lesley Tsai says. “I would love to see doctors better educated on what Lyme Disease can look like
and understand this so that people don’t have to suffer for so long.”

Laura Holmes, 15, of Campbell has been battling Lyme and other co-infectious diseases for two years. Her
mother, Karen, one of the support group members, says the mothers have seen great improvements in their
daughters with antibiotics, despite testing negative on the ELISA test.

“The ELISA test is a very poor screening test. It’s just not accurate,” Karen Holmes says. “The disease is
socially isolating. We’re so happy Laura has been diagnosed and is going through treatment because she
can now get out a little bit and take a class. She can have a life.”

The three families say they hope doctors will become more educated about the disease, which in turn
would translate to timely access to treatment and better care for sufferers of the disease.

Patel agrees and says education and research is key.

“The bottom line is that there needs to be more research,” he says. “Science is built on good solid research,
and unfortunately, when you have strong opinions and politics going on it can interfere with proper funding
and channeling of that research to figure out what’s really going on.”

Despite the ongoing problems the Mori family has faced, Alyssa has become an advocate for the disease.
Last year she and her mother ran a Lyme Disease awareness booth during a school robotics tournament,
handing out brochures and information pamphlets to San Jose residents.

“She’s so courageous and wants to make sure no one else has to go through what she’s been through,”
her mother says. “We’re determined for Alyssa to get better. She’s going to beat this.”

For more information on Lyme and other tick-borne diseases, visit www.ilads.org or www.idsoci
ety.org.

How to prevent tick bites

* Wear light-colored clothes.

* Tuck pants into socks.

* Perform frequent tick checks.

* Put clothes in dryer for 30 minutes to kill ticks.

* Check pets carefully for ticks.

How to remove a tick

* Do not burn or use any substance on tick.

* Do not grasp, squeeze or twist body of tick.

* Grasp tick close to skin with tweezers and pull straight out.

* Apply antiseptic to the site of tick bite.

* Wash hands with soap and water.

* Save tick if possible.