posted 30 March 2001 12:36               

Does Lyme disease turn "A" students into failing students? Can it render
athletic kids wheelchair-bound or transform happy children into suicidal
children?

This puzzling infection has been called "the new great imitator" (syphilis was
the previous great imitator) because it causes vague, flu-like symptoms and a
circular rash that is easy to miss. Lyme disease can both look like and lead to
learning disabilities, mood disturbances, depression, anxiety, attention
deficit disorder, and even manic or psychotic behavior.

Experts do not yet know with certainty how Lyme disease wreaks havoc on the
brain.

Researchers aren't certain how frequently Borrelia burgdorferi--the
corkscrew-shaped bacteria that causes Lyme disease--attacks the brain or
nervous system. Dr. Brian Fallon, an associate professor of clinical psychiatry
at Columbia University and director of its Lyme Disease Research Program,
estimates that if diagnosed and treated early, less than 5% of sufferers will
develop brain or nerve complications--a condition known as neuroborreliosis. If
left undiagnosed and untreated, the Lyme bacterium may attack the brain or
nerves in as many as 40-50% of patients.

There is little agreement among medical experts on this highly charged and
controversial issue. "The only well-designed studies testing the association of
mental disorders with Lyme disease did not show any meaningful link," says Dr.
John J. Halperin, a professor of neurology at NYU's School of Medicine and
chairman of the Department of Neurology at North Shore University Hospital.
"Someone can be in a confused state because of an infection affecting the body
as a whole, without an actual brain infection." And Halperin adds, "people who
have mental illness might suffer from a flare-up when they experience
significant physical illness."

Fueling the controversy is the inaccuracy of Lyme testing--which makes a
definite diagnosis difficult. "I cannot tell you the monster we are up
against," says Donna McCane, who believes her 11-year-old son has
advanced-stage Lyme disease. After a flu-like illness, Kyle developed disabling
headaches, joint pains, and chest pain. His spinal tap, blood tests, and MRI,
however, were normal. The problem is that experts do not yet know with
certainty how Lyme disease wreaks havoc on the brain.

What Is Neuroborreliosis?
The Lyme bacterium can attack the brain within weeks to years after first
infection, causing meningitis symptoms including stiff neck, headache, light
sensitivity, and fatigue. Over time, vague symptoms such as thinking
difficulties, school performance problems, and mood changes can develop. A
child might experience any of the following:

Limb pains, muscle weakness, or a "pins and needles" sensation.
Persistent headaches not relieved by over-the-counter pain remedies.
"Brain fog." (— or confusion).
Irritability, personality changes, distractibility.
Memory, learning, or word-finding difficulties.
Dr. Robert Bransfield, a board-certified psychiatrist who treats Lyme patients
in his New Jersey practice, explains that when Lyme contributes to mental
illness there are usually accompanying thought- or brain-processing
difficulties as well as physical complaints such as fatigue or joint pain.

Several theories have been proposed to explain how this bacterium may
infiltrate the brain:

The brain becomes inflamed after infection.

A person's own immune system is tricked into attacking the brain.

Persistent infection: The Lyme bacterium may use cells in the brain as a
"hideout" from antibiotics; perhaps explaining why brain involvement can be
difficult to diagnose and treat.

Elusive Diagnosis
Rapid diagnosis and early treatment of Lyme disease with appropriate
antibiotics leads to a cure in most people.

Bransfield points out, however, that healthcare providers who see a child with
a circular rash may mistakenly diagnose it as ringworm, dermatitis, cellulitis,
or spider bite. Oftentimes the rash goes unnoticed.

Neuroborreliosis can be difficult to diagnose because symptoms are vague and
testing is neither clear cut nor accurate. Falsely positive and falsely
negative results are not unusual. Newer and more accurate tests are nothing
more than one more piece of information in a puzzle. For example, recent
research found that special testing detected Lyme antibodies in spinal fluid of
one in four Lyme sufferers who had "normal" spinal fluid based on routine
tests, according to Fallon.

When doctors are misled by inaccurate test results or vague and confusing
symptoms, the consequences can be devastating.

Serious Consequences of Delay
Early diagnosis is important because a longer delay can translate into less
chance for successful antibiotic treatment. Drawing on his extensive experience
caring for Lyme patients, Fallon explains that proper treatment within 4 months
after Lyme infection usually has a good outcome. When treatment is begun 6
months or longer after infection, patients are more likely to have a stormy
course.
Experts do not even agree on what the best treatment is for those with
advanced-stage Lyme disease. Some doctors treat chronic Lyme patients with many
months of antibiotics, while others claim long-term antibiotic treatment
provides no additional benefit.

Within a few months after falling ill, Kyle had trouble walking because of knee
pains. He suffered from disabling headaches, and went from being an "A" math
student to a failing student. The consequences of uncertain or delayed
diagnosis can take a toll on parents as well. As McCane searched for answers to
why Kyle was deteriorating, her primary care physician told her to find another
doctor because she was being too demanding. "One doctor told me my son likes to
be sick," she says. Fallon adds that children with undiagnosed Lyme sometimes
have a secondary psychological problem due to frustration with feeling ill and
not being believed.

"We need more humility when dealing with this disease. There is much we do not
know," says Bransfield. As for Kyle, he has shown improvement with antibiotic
treatment but still suffers from headaches and math difficulties. "I pray he
will be the boy he once was, and if not, I will love the boy he has become,"
McCane says.

Kids at Risk
Children love to roll around in grass, dive into piles of leaves, and explore
the woods. These outdoor amusements, unfortunately, also take place in
environments very friendly to the deer ticks that transmit Lyme disease.
Children as young as 1 or 2 years of age are getting Lyme disease, according to
the Center for Disease Control Lyme Disease Program, which suggests ticks may
also be found in maintained areas of the yard.

Here are a few tips to help reduce your child’s risk for tick bites:

Avoid thick brush, overgrown grass, marshes, leaf- and woodpiles, and gardens.
Even beaches can harbor ticks.

If your child does go to a high-risk area, be sure they wear protective
clothing including light-colored clothing so ticks are easily spotted, long
sleeves buttoned at the cuff, long pants tucked into the socks, and a hat.

Use chemical repellants proven to be effective--Permethrin on clothing, DEET
(10% or less) on the skin, but not the face.

After outdoor play inspect your child from head to toe, particularly exposed,
hairy areas.

Rinse your child off in the shower while scrubbing gently with a washcloth. An
infected tick usually must remain attached for 24-48 hours to transmit Lyme
disease.

Consider having your property sprayed with a tick-killing agent such as
diazinon, chlorpyrifos, or carbaryl.

Use tall fencing around property or gardens that attract deer.

Lyme disease and Happy Endings

MEREDITH, age 11, Massachusetts
Meredith spent 3 weeks in a psychiatric unit at age 9. She had become
delusional, suicidal, homicidal, and had hallucinations. Her IQ dropped 45
points and she even lost her math and reading abilities. An MRI and special
SPECT scan were abnormal.

After 4 weeks of antibiotic treatment with metronidazole and clarithromycin,
she showed dramatic improvement. "She was so improved it was like she came out
of a coma," her mother says. She recently read Charlotte's Web.

EVAN KELLY, girl, age 3 1/2, California

One day Evan Kelly began having fits of rage, couldn't remember simple things
she once knew, and cried every night from pain in her knees. Alarmingly, she
showed sadistic behavior like trying to strangle her cats, her mother recalls.
Ultimately, a Lyme specialist treated her with azithromycin and ceftibuten
prescribed for Lyme disease with brain involvement. Within 2 days, results were
apparent as she sang her ABCs for the first time in a long while. Evan
Kelly’s mother says, "She was back: My baby who had been missing in her own
body for over a year!"

Lyme Disease Links
Lyme Disease Network (www.lymenet.org)
Nonprofit foundation dedicated to Lyme disease prevention and treatment.

American Lyme Disease Foundation, Inc. (www.aldf.com)

Supports Lyme research and education.

Lyme Disease Research Program at Columbia Presbyterian Medical Center
(www.columbia-lyme.org/dept/nyspi/flatp/terms.html)

A short Lyme disease glossary.
http://healthwatch.medscape.com/medscape/p/G_Library/article.asp?RecID=2
35500&ContentType=Library&DietImg=1

posted 21 August 2004 07:46               

Thanks for the article!

Isn't your daughter's name Evan? Is this your Evan?

Are you and your daughter still doing well? I hope so!

We are still here...... (my daughter has made a few tiny baby step forward, yet still disabled)....

Edited Post - I just reread and see that this is a **Very** old article! So ........

Hugs,
Lynn Lymemom

posted 21 August 2004 13:03               

Good Stuff.