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. *****
Copyright � 2004-2006 Washington Examiner
Posted by tequeslady (Member # 6832) on :
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.
Posted by lpkayak (Member # 5230) on :
well i'm glad lyme disease is not a problem...where do they get this c_ _p?
Posted by lymelady (Member # 6207) on :
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
Posted by 5dana8 (Member # 7935) on :
"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
Posted by lymelady (Member # 6207) on :
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!