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The data and information presented in this web site are presented in good faith and believed to be accurate. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect.
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http://www.timesrecord.com/website/main.nsf/news.nsf/0/F9FC0E223C47BD8F05256E920062A2AA?Opendocument
Living with Lyme disease |
| Darcie_Moore@TimesRecord.Com |
| 05/12/2004 |
Brunswick woman explains how one deer tick bite changed her life
BRUNSWICK - Last spring Deborah Casterlin thought she had just another bug bite on her forearm, but then she noticed a small, round, red rash around the bite. That had never happened before.
"If it gets larger, come in because it's Lyme disease," her doctor told her over the phone. The rash didn't get bigger, so she didn't get treatment.
Then she started to feel tired. "But I'm a really active person," she rationalized. "My joints hurt ... but I'm 37, life is catching up with me," she told herself.
Then came the heart palpitations, shortness of breath, ringing in her ears, increasing fatigue and low exercise and heat tolerance. "This isn't normal for me," she realized.
Casterlin visited the emergency room two-and-a-half months after she was bitten by a deer tick and was misdiagnosed with a cardiac arrhythmia.
Sent home with a recommendation for lifestyle changes, Casterlin went to the emergency room a few weeks later with Lyme spinal meningitis and a second oval rash in a new location on her body. This time she was diagnosed with Seronegative Lyme Disease.
Casterlin, now 38, of Brunswick, said she wasn't educated about Lyme disease. Like many who have heard of the disease, Casterlin didn't realize how prevalent it is. Now she wants to help not only the general public but also medical professionals to be aware of the signs and dangers of Lyme disease.
"People need to be educated so this doesn't happen," said Casterlin. "Don't do what I did."
For her, the disease has brought confusing, frustrating and scary moments. "At one point, they thought it was a brain tumor," said Casterlin. "I was that sick."
Her husband was afraid he'd lose his wife; her two daughters, 11 and 13, feared for their mother.
It turns out it was Lyme disease, not a brain tumor.
| Lyme disease symptoms |
Localized early acute stage
- Expanding rash (erythema migrans) three to 30 days after disease transmission, usually radiating from site of tick bite (size of rash has ranged from 2 inches to 2 feet).
- Swelling of lymph glands near tick bite.
- Generalized aches.
- Headache.
Early disseminated stage
- Two or more rashes not at bite site.
- Migrating pains in joints/tendons.
- Headache.
- Stiff, aching neck.
- Facial palsy.
- Tingling or numbness in extremities.
- Multiple enlarged lymph glands.
- Abnormal pulse.
- Soar throat.
- Changes in vision.
- Fever 100 F to 102 F.
- Severe fatigue.
Late stage
- Arthritis (pain/swelling) of one or two large joints.
- Disorientation; confusion, dizziness; short-term memory loss, inability to concentrate, finish sentences or follow conversations; mental fog.
- Numbness in arms/hands or legs/feet.
Source: American Lyme Disease Foundation, Inc. (www.aldf.com) |
Diagnosis
It isn't easy to diagnose Lyme disease. The two common tests, the ELISA and the Western Blot, are not foolproof, and Casterlin said she tested negative as some infected patients do.
Casterlin was treated with the antibiotic Amoxycillin for two weeks, but got worse. She took the antibiotic for another week. She continued to worsen and was put on the intravenous antibiotic Rocephin for 28 days. She finally started to improve, but then symptoms continued after the 28 days. She was told she was "cured," Casterlin said.
Still struggling with the disease today, Casterlin doesn't blame doctors for how long it took to diagnose her and get her on the right track to recovery. She believes she's making progress toward recovery now that she's begun an oral antibiotic treatment from a Lyme disease specialist in Boston.
"I can't afford the luxury of a negative thought," she said.
Life has changed
The challenges of the disease follow her every day. The cork-shaped spirochete bacteria that causes Lyme disease, Borrelia burgdorferi, affects different body organs and systems differently.
"You never know what to expect," Casterlin said. She even laughs as she explains how her arm sometimes moves involuntarily.
Also frustrating is the loss of concentration and the mental fog she experiences at times. "Nothing is automatic anymore. It's like living life left-handed; you have to think, think, think so much."
Such formerly automatic tasks as driving have now become huge challenges because her mind can only do one task at a time. Now, when she returns from driving, "I'm so exhausted."
Ironically, one deceiving symptom is the rosy, attractive complexion of a Lyme disease victim, Casterlin said, because of the fever it causes.
"It's frustrating to know that you're sick and you look so normal," she said. "Sometimes I feel like I'm faking it."
A year after her tick encounter, she still suffers an array of debilitating symptoms.
One nymph tick, the size of a period on a computer keyboard, has slowed the pace of Casterlin's life, draining her of energy. "I actually watched a spider spin a whole web from start to finish," she said. "I never would have watched that."
"I have become comfortable being uncomfortable," she said, knowing her symptoms always worsen at the end of the month and she "crashes," she said. She recalls lying on the floor in the kitchen because she couldn't move.
"The kids would climb over me to get to the cupboards," she said. They don't remember when she was normal.
Her illness has also taught her things she could never have understood about illness and physical limitations, even after years of work as a physical therapist.
Making the best of her situation, Casterlin still provides physical therapy part time, saving energy for her family in the afternoons. She even still walks in the woods, but gives herself and family thorough tick inspections every day.
"I'm not going to stop living," Casterlin said.
| Ways to avoid tick bites |
- Be aware of the risk of tick bites and act accordingly.
- Tuck your pants into your socks and shirt into your pants when walking in woods, brush or tall grass. Deer ticks attach to clothing and walk upward.
- Wear light-colored clothing so ticks can be seen more easily.
- Use a repellent containing DEET (Mary Holman says no more than 30 percent is necessary) and use according to label directions. Don't use more than 10 percent DEET on young children.
- Clothing containing permethrin repels and kills ticks if you must be in areas where ticks are prevalent (not for skin use).
- Consult your veterinarian about tick repellents, acaricides or even Lyme vaccines to protect dogs.
- Inspect yourself, clothing, children, companion and pets for ticks when returning from woods or field. Ticks often attach in body folds, behind ears and in the hair.
- Take a shower and wash clothes immediately and heat dry them to kill ticks.
- Keep grass mown and cut brush in yards to reduce tick habitats in problem areas.
- When transporting pets or game, take precautions to avoid bringing ticks into new areas.
Source: Maine Medical Center Research Institute's Lyme Disease Research Laboratory (www.mmcri.org)
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A map provided by the Maine Medical Center Lyme Disease Research Laboratory, based on data from deer ticks submitted for identification from 1989 to 2002, indicates that the largest tick population in Maine can be found along the coast. Tick populations inland are lower, according to the map.
Mary Holman, a research associate for Maine Medical Research Institute's Vector-borne Disease Laboratory, added that deer tick populations are growing and moving inland.
Should you get bitten by a deer tick, use a pair of tweezers and without squeezing, grasp the tick by the head near the skin and pull gently straight out until it lets go, which could take several minutes. Apply antiseptic to the bite, disinfect the tweezers and wash your hands thoroughly.
Lyme disease patients who receive early treatment with antibiotics almost always make a full recovery.
The laboratory will identify ticks for free, which is important for your physician or your pet's veterinarian because dogs, and cats to a lesser extent, can suffer from Lyme disease. Holman asks people not send dog ticks, because they've had hundreds sent in already. Dog ticks don't transmit Lyme disease.
Holman will present "Lyme Disease, Reduce Your Risk" June 10 from 7 p.m. to 8 p.m. in the Morrell Meeting Room of Curtis Memorial Library. Visit www.cornerstonesofscience.org or call Jocelyn Hubbel at 725-5242 extension 238 for more information.
Visit the Maine Medical Research Institute at www.mmcri.org/lyme/lymehome.html and the Centers for Disease Control and Prevention at www.cdc.gov for more information about Lyme disease and ticks. |
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