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lymelady
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Member # 6207

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The Washington Examiner
NEWS
Maryland News

*****
In the shadow of Lyme

After moving to Gaithersburg, a family learns firsthand the
dangers of Lyme disease
By Karl B. Hille
Examiner Staff Writer
Sunday, January 8, 2006 11:17 PM EST

-----------------------------------
David Hubbard injects
antibiotics into his arm on Thursday. Hubbard, his wife and
five children have endured years of medical problems due to
Lyme disease. Andrew Harnik/Examiner ] [Image omitted on
LymeInfo.]
-----------------------------------


The pinhead-size parasite crept from the laundry in Kathy
Hubbard's Gaithersburg home nearly four years ago.

The punch it packed left her fighting for the will to live
- a battle she is still struggling to win.

Lyme disease is transmitted by the smallest of creatures:
The Ixodes scapularis, or deer tick, is about the size of a
poppy seed. But its saliva can carry the Lyme bacterium and
a cocktail of other infectious agents responsible for the
largest family of insect-borne diseases in the U.S.

Kathy and David Hubbard and their five children have fought
them all.

David discussed his treatment regimen while injecting a
series of four large syringes into a line stitched into his
arm - as he does three times a day, pumping antibiotics
directly to his heart.

-----------------------------------
Dr. William Petri, chief of
infectious diseases and international health at the
University of Virginia, in Charlottesville, Va. Andrew
Harnik/Examiner ] [Image of bulls-eye rash omitted on
LymeInfo.]
-----------------------------------

He grew quiet when asked about the threat to his children.
"It's like being in a dark tunnel and not being sure when
and if your going to see the light at the end. Our feeling
was, 'You can mess with us, but leave our kids alone.' But
there was nothing we could do about this."


'One of the lucky ones'

Kathy first noticed a bull's-eye rash on her skin in the
early spring of 2002. They had moved from Phoenix shortly
before, and she knew enough about Lyme to go to a local
clinic.

The doctor dismissed her fears.

"He said it definitely looked like a Lyme disease rash,"
she said. "When he asked if I had any joint pains or
flu-like symptoms, I said no. He told me I was one of the
lucky ones, and sent me home."

Their son Thomas, 15, was infected later that summer, but
they never noticed a rash. In November he started
complaining of "arm sprains," and would go to bed after any
exertion, even taking out the trash.

The day before Thanksgiving, they took him to the emergency
room: His left knee was swollen like a balloon and he was
fighting a high fever.

David was at work as a satellite systems developer when the
doctor's call came. He still remembers the doctor who
recommended surgery.

"I told Kathy to tell the doctor, 'Thanks for the opinion;
I'll get another opinion and get back to you,' " he said.
"He took the cell phone from Kathy and the doctor said 'Mr.
Hubbard, I was going to go home and stuff my turkey, but
I'm going to operate on your son. And if we wait 24 hours,
we won't need to have this discussion."

For 10 days, Tom was hospitalized and given intravenous
antibiotics. The tests came back positive: Lyme disease.


A daughter's pain

Their oldest daughter, Elaine, 15, still struggles to get
up and go to school.

"I can sleep all night, and I can get up and I'm still
tired. I can sleep all day. I get sick a lot. I almost
constantly have a headache," Elaine said during a break
from reading "The Princess Bride."

She also has a hard time falling asleep at night due to
muscle and joint pains.

Kathy eventually went back to the doctor, beginning an
odyssey of appointments, misdiagnoses, tests, false
negatives, apparent cures and relapses that continues
today.

"It just kept getting worse," she said. "Every day I
developed a new symptom, it seems."

In 2003, David began showing symptoms. Bad news had come to
stay.

The following year, their doctor threw in the towel and
referred them to his mentor, a doctor in Long Island, N.Y.,
who specialized in treating late-stage Lyme and related
tick-borne diseases - babesiosis, bartonella and
ehrlichiosis.


A family's plight

After another child became symptomatic, the Hubbards had
all their children tested.

"It was definitely a shock," David Hubbard said: All their
children had contracted some combination of bacteria from
ticks.

When it came time for David to look for a new job in 2003,
they headed to Charlottesville, Va., where deer ticks are
less common.

Though they enjoyed living in Gaithersburg, David said the
family will not move back to Maryland, which has the
nation's third-highest prevalence of Lyme infections. The
risks, he said, are too high.


Fighting an elusive foe - Lyme disease often missed in
early stage

Lyme disease is nearly 100 percent treatable with early
diagnosis and two to three weeks of antibiotics, experts
say.

But treatment of late-stage or secondary Lyme can be more
complicated, especially when one or more of a host of
co-infections move in with the bacterium that causes Lyme,
called Borrelia burgdorferi.

"Our son Thomas, who was only diagnosed with Lyme - none of
the co-infections - never had any relapse," said Kathy
Hubbard. All seven members of her family caught some
combination the bacteria borne by deer ticks - Lyme,
babesiosis, bartonella and ehrlichiosis - from the woods
surrounding their home in suburban Gaithersburg.

Though Tom recovered after several weeks of intravenous
antibiotics, the rest of his family has fought for months
or even years since the first symptoms showed up in 2002.

Most of them were initially misdiagnosed, allowing the
diseases to gain a strong foothold.

That should not have happened in Maryland, doctors who
specialize in the disease say.

"Doctors in Maryland should be fully aware of it," said Dr.
Michael Zimring, of Baltimore's Mercy Medical Center. "Any
internist or family practitioner should know what Lyme
disease is."

Named after the town of Lyme, Conn., where it was first
identified about 20 years ago, Lyme often begins with a
rash. Resembling a bull's-eye, the erythema migrans rash
spreads from the bite, then clears in the center.

Left untreated, the bacteria can get into the blood and
attack the brain, heart and joints.

In secondary Lyme infections, symptoms resemble arthritis,
flu, and even deadly spine and brain infections like
meningitis.

Even then, some doctors say Lyme is treatable by
intravenous antibiotics administered over two to three
weeks.

Lyme does not play fair. The rash may not develop at all.
It may not look like a textbook example, or it may occur
under hair where it goes unnoticed.

"We need better diagnostic tests for it," said Dr. William
Petri, head of the University of Virginia Medical Center's
infectious disease lab.

Doctors cannot develop a culture as with other bacterial
illnesses.

"You have to gather evidence to identify it," Petri said.
"Later antibody testing only picks up 9 out of 10
patients."

A small percentage of patients develop a debilitating
condition called fibromyalgia which can linger even after
the bacteria has been eradicated.

Symptoms include chronic joint and muscle pain and
difficulty thinking or remembering things.

These symptoms do not respond to antibiotics in clinical
trials, Petri said, though they tend to diminish in one to
two years.

There is a silver lining: "There has never been an
antibiotic failure in treating Lyme," Petri said. "The
disease hasn't developed resistance to antibiotics."

Lyme cannot spread from person to person, so any
antibiotic-resistant bacterium remain within their host.

Lyme is not fatal. Even untreated, most cases go away in
five to 10 years, Petri said.


Lyme prevention

No vaccine can protect you or your loved ones from Lyme
disease, said infectious disease researcher Dr. William
Petri.

The original vaccine was 90 percent effective and had to be
taken every year, but a slight chance that it could cause
long-term side effects led the company to stop producing
it.

"There's not a whole lot of profit in vaccinations," Petri
said. "There's not much of an incentive."

Though some sprays are effective at keeping ticks at bay,
the best protection is knowing your risks and checking for
the pests if you have spent time in the woods.

Remove any ticks carefully. If they have already dug in,
mouth parts may break off under the skin, increasing the
chance of infection.

Deer ticks, which carry Lyme disease, are tiny. Adults grow
to two millimeters across, while the more infectious
infants, or nymphs, are as small as the period ending this
sentence.

Tick checks are also important for preventing the more
dangerous Rocky Mountain spotted fever, carried by the
larger dog tick. Spotted fever is fatal in as many as 20
percent of cases.
*****

CONTACT:
[email protected]
OR
Send a letter using this online form:
http://www.dcexaminer.com/threads/

Copyright 2004-2006 Washington Examiner

Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
tequeslady
LymeNet Contributor
Member # 6832

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I really hate this statement though:

"Lyme is not fatal. Even untreated, most cases go away in
five to 10 years, Petri said. "


It really seems to minimize the whole thing.

Posts: 856 | From Texas | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

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well i'm glad lyme disease is not a problem...where do they get this c_ _p?

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13710 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lymelady
LymeNet Contributor
Member # 6207

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The following is a letter to the editor written by Tincup. All of us neeed to write in on this article also; this is the only way we can fight back and we have two great opportunities this week. Please write!!!!

Dear Editor,

Your well written article, "In the Shadow of Lyme" by Karl Hille, was both heart breaking and infuriating. The Hubbard's, bless their hearts, have lived with medical nightmares because the Lyme tests and subsequent treating guidelines are not working.

Dr. Zimring's statement is correct, "Any internist or family practitioner should know what Lyme disease is." The problem is, many in the medical profession don't.

For example, Dr. Petri (UVA) stated, "There has never been an antibiotic failure in treating Lyme." If you believe that, I have a friend named Jack who wants to sell you some beanstalk beans.

Please note, the infectious disease treatment guidelines that most physicians and insurance companies adopted years ago are outdated, restrictive, based on cost-effectiveness and give credence to studies based on unreliable blood tests.

You and your family deserve better.

For more information please contact the Lyme Disease Association 1-888-366-6611 or www.ilads.org

Tincup

Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
5dana8
Frequent Contributor (1K+ posts)
Member # 7935

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"Later antibody testing picks up 9 out of ten cases"

Ms information ! Mis information Mis information!
Testing picks up 40% at best if at all.


"Untreated cases usually go away in 5 to 10 years.!"

Mis information! Mis information!Mis information!


In 5 to ten years the disease is more entrenched & harder to treat. :rant

--------------------
5dana8

Posts: 4432 | From some where over the rainbow | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
lymelady
LymeNet Contributor
Member # 6207

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Even if this info in this article is not perfect, at least the article is allowing the public to understand what this disease is!!

This is a war guys, no fooling around. They are after our docs and labs and us. We need to use every opportunity to get our side out there by:

1. calling your local papers to see if they would do stories on your lyme, use any connection you might have
2. writing letters to the editor when a story does come out.

Think of all the misdiagnoses and crap that is going on out there. I have one friend who cannot speak or walk due to lyme. She was told she had ALS by a prominent university teaching hospital. We have got to make a difference here and publicity is a major way to do it, because only then will these stupid congressmen do anything: PRESSURE, PRESSURE PRESSURE from a lot of directions at once so they cannot ignore us any more!

Lymelady

Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
   

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