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LIVING WITH LYME DISEASE- Life can quickly change with a simple tick bite
Tim Delaney
Victoria Advocate
Victoria, TX
September 20, 2006
Like an assassin with disregard for its human target, it waits to harm when the opportunity arises. This insidious creature is Lyme disease and the most that is known about it is that - in Texas and the region - it is carried by the Lone Star tick and the black-legged tick.
The disease infiltrates bodies because little is known about how to detect and terminate it.
There are potentially other sources: other ticks, such as the American and brown dog tick; chiggers; fleas; and an array of obscure biting insects, such as dust mites and sand flies.
A Lone Star or black-legged tick bit an active Victoria pre-teen two years ago. At the time, she enjoyed hunting with her dad and playing sports at school, and she excelled at her studies. Her peers considered her happy and positive.
The world of Mercedes DeLaGarza, now 12, changed for the worse because of the disease. Similar stories are numerous in Texas and across the country.
Lyme disease is caused by tick spirochetes, corkscrew-shaped microorganisms, known as Borrelia burgdorferi.
A tick transfers these spirochetes when its beak-like projections burrow into a person. The spirochetes drill into white blood cells where they hide. Healthy white blood cells do not recognize compromised white blood cells as threats, so the immune system fails to fight off the microorganisms.
As more is learned about Lyme disease, this is just one of three ways spirochetes hide, said Dr. Jonathan Forester, a Lyme expert in Louisiana.
Spirochetes also can metamorphose to take the form of a cyst, which develops when the spirochete has an adverse environment (antibiotics). An "L" form is similar to a larva and "hatches" from the cyst when things are safe for its existence, said Forester.
Death from Lyme disease is unusual, but it can happen when spirochetes target the heart.
Lyme was first identified in the United States during an outbreak of arthritis-like symptoms in 1975 in Lyme, Old Lyme, and East Haddam, Conn. Since that time, medical research has been slow in coming, and knowledge about the disease has not increased much.
AREA FAMILIES ENDURE LYME
Mercedes DeLaGarza of Victoria moves slowly across her mother's kitchen and seats herself at the kitchen table. She scowls at her mother's question, "How are you feeling?" Mercedes has her good days and her bad days, usually the latter.
A New York doctor diagnosed Mercedes with Lyme disease after running a gantlet of tests for other maladies because her earlier Lyme tests came back negative. By the time she saw Dr. Charles Jones in New York, a brain SPECT (single photon emission computerized tomography) showed that Lyme had entered her brain.
Mercedes was 10 years old in late January 2004 when she went hunting with her father near the Guadalupe River, where she sat in a deer blind, she said. After that trip, she said the joints of her fingers began to hurt.
"I thought maybe, 'I won't be able to do things like tennis.' I get real tired real easy. In early February, I had a rash - didn't know that it was caused by a tick. The rash was a perfect circle with purple dots."
Angie DeLaGarza, Mercedes' mother, took her to a hematologist, a psychologist and a neurologist. But in Mercedes' circle - friends, fellow students, and teachers - relationships, perceptions and tolerances declined.
"They called her 'lazy.' They told her, 'You're rude,'" her mother said. "This is the meanest bacteria."
As time passed, before she was finally diagnosed with Lyme in May 2004, Mercedes endured immense physical and mental pain because of other tests. She continues to take medication for pain associated with the disease.
"Mercedes has gone through two spinal taps, steroid injections. She's seen three neurologists in San Antonio and Victoria," her mother said. "One doctor told her it was all in her head. They think she is crazy, has MS and chronic fatigue. One doctor told me I had a lemon for a child."
After the Lyme diagnosis, doctors were worried about every organ in Mercedes' body, including her heart.
"It's too hard to deal with," Mercedes said.
Her mother added, "Insurance covers Lyme, but not if the tests come back negative like they did at first. And medication is usually long-term antibiotics - $1,300 a month. If they would catch this right away and take care of it, insurance wouldn't be so bad. So what makes them (doctors) think it's not in this area?"
She added, "If you're in an area they say Lyme disease doesn't exist, they go with a diagnosis of Alzheimer's, fibromyalgia, multiple sclerosis, lupus and chronic fatigue syndrome, and they'll tell you it's all in your head."
A chronic condition, fibromyalgia's symptoms are similar to Lyme disease and include fatigue, pain in all muscles, ligaments and tendons, and multiple tender points where slight pressure causes pain.
It's not always visible
About 63 miles north of Victoria in Schulenburg, Arthur and Lynn Holle live in retirement. He looks healthy as can be, but looks can be deceiving.
Holle said a tick bit him in April 2000. He then had the Lyme signature rash.
He noted, "This was not a deer tick; this was a brown dog tick. A day or two after that I had a red spot. It was a one-and-a-quarter-inch diameter red spot. Two days after that, a pink ring formed around it."
Many Lyme patients don't get the rash, said Dr. Jonathan Forester, Louisiana-based Lyme specialist. In fact more do not than do.
Holle was given doxycycline, the standard antibiotic for infectious insect bites.
He said, "When I really got sick, I really got sick. Tiredness and sleepiness - a week after the rash showed up. Three months later I woke up tired, fatigued, and the next morning it got worse."
Holle's doctor said it was the first and only case he had ever seen. The family doctor decided to prescribe 30 days of the antibiotic rocephin intravenously.
"On the 15th morning ... I had some energy. It lasted me for three-and-a-half years before a gradual return of symptoms," Holle said.
When Holle first tested for Lyme, he tested negative. His doctor also prescribed a blood oxygen test because he suspected that Holle suffered from heart and lung problems. Holle demonstrated a shortness of breath to merit the test.
"He tested negative for heart and lung problems. The shortness of breath is a common Lyme symptom," his wife said.
His local doctor referred him to eight different specialists in Houston. These specialists all told him he did not have Lyme. Holle was examined first by a rheumatologist, who suspected he had lupus.
"They never were able to nail it down," Holle said. "They said I needed to see an internist - somebody else and somebody else - cardiologists, psychologists, internal medicine and rheumatologists."
Holle said, "Eighteen months ago when I really had my relapse they told me that without tests we really do feel like you have no Lyme disease."
Finally, a North Carolina doctor, who the family doctor consulted with, diagnosed Holle with chronic Lyme disease. He continues to take antibiotics orally for management of the disease.
A vet's diagnosis
Back in Victoria County, Karen Brooks of Inez said she learned she had Lyme in 1998. "My vet diagnosed me." She said she did not get the signature rash but kept a diary of her symptoms and gave the log to her doctor."
"When your immune system is down you can get Lyme easily. And that's when I got it," she said. "I kept going to all these doctors and was diagnosed with lupus, Cushings and AIDS. They kept telling me everything is negative," Brooks said.
She said the veterinarian who recognized her symptoms was from Dallas, but she had met him at a dog show in Laredo. She said this vet identified Lyme symptoms in her immediately.
"I've got a sharp mind. Don't tell me there's nothing wrong," Brooks said. "I found a doctor who I got to do something."
IgeneX lab in California ran the Lyme test for Brooks. The lab also sells the Lyme test kits for $95. Patients can buy the tests and request that a doctor use them. The doctors have to request a lab to run the test.
"I went to nine doctors. I finally went to Dr. Patricia Salvato of Houston. I got four months of 2 mg of rocephen and four months of zithromax daily."
Brooks said she still has "brain fog, but nothing like before (the medication)."
Recently, Mercedes' mother met Brooks and asked, "How can they take care of an animal with Lyme but not a human being?"
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Lyme Disease Affects Outdoor Lovers Year-Round
KFOX-TV
El Paso, TX
Lyme disease is more prevalent during the summer months, but there are ticks that are around all year long.
"In the entire state of Texas there will be some species of ticks year round. It affects animals, it affects humans, and it affects a wide range of species," said Dr. Ken Waldrup, a tick expert with the Texas Department of State Health Services.
The eight-legged, blood-sucking critters are the culprits for Lyme disease. Those who love the outdoors are more at risk of contracting it because ticks are everywhere in the environment. One bite and you're infected.
Once the tick bites you it can take up to two weeks for the symptoms to appear. In most cases you'll develop a rash that looks like a bulls-eye. Experts say if you see this, you need to get to a doctor immediately.
"Many people that have Lyme disease, especially the milder kind, just think they have the flu. If you get a severe case of it, it does invade the joints," said Waldrup.
There's no real cure for the disease, but the earlier you treat it, the better off you'll be. Waldrup said in severe cases the joint inflammation can leave a person crippled.
"No. Quite honestly it doesn't scare me. I guess it should," said Eddie Hernandez, who's now getting ready for hunting season.
Hernandez said the threat of Lyme disease doesn't stop him from enjoying the sport because he takes the proper precautions. "I tuck my pants inside my boots. I tie my boots, and on occasion I've sprayed a repellent, but I don't like to because hunting is all about concealment," he said.
Experts suggest spraying bug repellent containing DEET over your clothing every time to avoid the ticks from sticking around, and possibly biting. They suggest light-colored clothing so they're easy to spot if they're on you. Also, avoid high grass.
Summer months are more common for ticks, but there are some that are year-round. Keep that in mind if you'll be going hunting in the coming days.
Remember that pets can carry them inside the home, too.
Copyright 2006 by KFOXTV.com
Courtesy: www.lymeinfo.net
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© 2006 The National Lyme Disease Memorial Park Project
