She excelled in school and on the sports field. She spent hours in the
outdoors, hiking, running and camping. Then she turned 13 and Alyssa's
world turned upside down.
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
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
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
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
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
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
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."
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
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
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
"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
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
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.