Topic: Lyme Teen w/ Seizures Told She's A Psyche Case
CaliforniaLyme
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Then Victoria had another seizure in June 2007, also while in school. After a trip to the emergency room and a referral to Columbia Presbyterian Children's Hospital in New York City, she was told she did not have Lyme disease, and instead had "deep-rooted psychological issues," and that she should think positively in order to feel better.
******************************************** Taking steps toward awareness Big Flats teens organize walk for Lyme disease
September 9, 2007 Post Comment By Kathleen Costello [email protected] Star-Gazette
From left, Victoria Wilcox and Sarah Lynch, 16, both of Big Flats, walk down the path where they hope to hold a Lyme walk at Big Flats Community Park.
At 16 years old, Victoria Wilcox and Sarah Lynch are excited about beginning their junior year at Horseheads High School. They're passionate about marching band, Harry Potter, music and the prospect of driving. But what are the Big Flats teenagers talking about the most? Lyme disease.
The two friends, who met in Mrs. Cortese's second grade in Big Flats Elementary School, are planning a fundraising and informational Lyme disease walk in June. When discussing the walk, their faces become animated and their words flow together.
"We haven't finalized the date yet, but we're hoping to have it on a Saturday at Big Flats Community Park," Victoria says.
"We have so many ideas and so much to do before next year!" Sarah says.
"We're thinking about having a 50-minute walk, to represent the fact that Lyme disease is in 50 states ..." Victoria says, "and we definitely want the event to have a geographical context," Sarah finishes.
The two teenagers came up with the idea for a local walk for Lyme disease during this year's Relay for Life in Elmira, which benefits the American Cancer Society. It started as a joke, progressed to a possibility, and finally became a plan. They have a Web site, a post office box, and a seemingly insatiable amount of determination. Both were aware of the need for Lyme disease awareness in the Twin Tiers, since one of the young women has the disease and the other has been watching her friend suffer.
Victoria's story Victoria contracted Lyme disease in June 2005. She had the classic bulls-eye rash on her arm, but the emergency room doctor misdiagnosed it as an infected hair follicle.
"It was painful, but then it cleared up," she says.
But three weeks after the rash was gone, Victoria had a seizure. This led to extensive testing and a positive test for Lyme. She was diagnosed with Lyme disease in September 2005 and was placed on a course of antibiotics for several weeks. Despite being exhausted and having debilitating headaches, earaches and eye infections, she was pronounced cured of the disease.
"Then (in fall, 2006) I couldn't concentrate and started feeling like I was missing half of my lessons. Later, I found out that it was due to little seizures I was experiencing that were making my brain completely stop functioning," Victoria says.
On Dec. 4, 2006, Victoria had a seizure in school and was rushed to the emergency room. After a hospital stay and further testing, she was referred to a Lyme disease specialist in Connecticut, who diagnosed her with chronic Lyme disease and meningitis of the brain. By this time, she had been taken out of school and was in extreme pain. After taking several different types of antibiotics, Victoria was finally given the antibiotics she takes now.
"It was so frustrating, because I was ahead of my class and taking two college courses, and then I fell behind," Victoria says. (She finally finished her coursework for her sophomore year this summer.)
Then Victoria had another seizure in June 2007, also while in school. After a trip to the emergency room and a referral to Columbia Presbyterian Children's Hospital in New York City, she was told she did not have Lyme disease, and instead had "deep-rooted psychological issues," and that she should think positively in order to feel better.
Today, Victoria has resumed treatment with her specialist in Connecticut and receives a daily dose of antibiotics through a PIC line in her arm that delivers the medication to her heart. PIC lines are long, flexible tubes inserted into a large vein, usually near the elbow. The tube is threaded up the vein until its tip reaches the large veins inside the chest. PIC lines are helpful for patients who need to receive medication at home for long periods of time.
She's been feeling much better, (which makes her think more positively!) but is still not "herself." She must get extra sleep, limit her activity and essentially take precautions with every move she makes and everything she eats.
Diagnosis, testing and treatment Lyme disease is elusive. It's difficult to detect and frequently misdiagnosed.
"I've seen thousands of patients with Lyme disease, and 90-plus percent have been told they don't have it or have been improperly treated for it," says Dr. Gregory Bach, a Philadelphia-area expert on tick-borne diseases.
About 20,000 new cases of Lyme disease are reported to the government every year, says a June 2007 analysis from the Centers for Disease Control and Prevention. The CDC acknowledges that's a fraction of the true toll, as many cases go unreported. And experts say the numbers are probably much higher.
"I'd say the numbers are between 100 to 1,000 times that statistic," Bach says.
Lyme disease, named in 1975 when a group of children in Lyme, Conn., were found to have the disease, is a bacterial infection spread by ticks. Within weeks of a bite, people often develop flulike symptoms. But it's not always easy to detect. While some people develop a bull's-eye rash around the bite, this is not a definitive sign: Less than 40 percent of Lyme disease sufferers develop a rash at all.
Lyme disease begins in the skin and, if untreated, spreads to the joints and the nervous system. It can cause a plethora of symptoms and often mimics other diseases, making diagnosis difficult. People are commonly misdiagnosed with multiple sclerosis, fibromyalgia, lupus, chronic fatigue syndrome, arthritis, ALS (Lou Gehrig's Disease), Alzheimer's and carpal tunnel syndrome, among other illnesses.
For most people who develop chronic Lyme disease, the standard treatment is a course of antibiotics for one to four years, along with a program of exercise and nutrition. There is no official cure; even after symptoms disappear, recurrences are common.
Bach says he always treats his patients for at least six months.
"I've had thousands of patients who were given antibiotics for four to six weeks, only to get sick again," he says.
Tests for Lyme disease are unreliable and inconsistent, say experts. Several blood tests are available, but all have limitations. Some will not detect infection until after the disease has manifested itself. Others are simply not accurate, Bach says.
And to complicate the diagnosis even further, Lyme disease often is not the only illness present.
The ticks that carry Lyme disease also carry other diseases, so it's typical for people to develop co-infections. Doctors will often have to find balance between treatments for two or more infections.
About the walk Sarah and Victoria have a motto for next year's walk: "Lyme walk: for those who can't."
This theme correlates with an idea they have for people to walk for a specific person. Through Lyme disease Web sites and forums, they plan to collect pictures and stories of people afflicted with Lyme disease across the country, and they want walkers to wear these people's pictures. Victoria and Sarah envision handing out small sheets or circles of paper with photos and short stories about how Lyme disease has affected that particular person. They want participants to say, "This is who I walked for."
The walk will have a registration fee, which will include a T-shirt and, likely, a bag of pamphlets and helpful information.
"Not a lot of people know what Lyme disease is, or how badly it can affect people," Sarah says. That's why she and Victoria want to make sure that education is part of the walk. They plan to have a great deal of information available at the walk for people to take home with them.
Victoria explains what she hopes people will know after the walk:
"How people can protect themselves, what they should do if bitten by a tick, what the symptoms (of Lyme disease) are and how to communicate with their doctor about the disease."
The major stumbling block in planning this walk is money. They need to raise funds and hope to find sponsors.
Both teenagers say Lyme disease has changed them. Sarah says she's much more conscious of sickness and illness and unforeseen circumstances.
"It's made me worry more, and made me into even more of a hypochondriac!" she says. Victoria's reaction is, understandably, even stronger:
"Lyme disease has made me grow up. It's shown me what I took for granted -- even taking a shower, and not being in pain one day. And it's made me realize what a good life I had before this. I do believe that Lyme has made me a stronger person."
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All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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What a great article!! I'm passing it along to someone who has not figured out that he has lyme disease....yet. I've been working on him. He has seizures and "Parkinson's"....and he's a Master Gardener.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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tdtid
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Member # 10276
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Thank you for posting this article. I have a friend with a daughter in law with symptoms that I swear are lyme related but they just don't think it is because she's having seizures and never heard of seizures related to lyme.
Since I was diagnosed with "mini seizures" after an EEG before my diagnosis, I knew this could still be an option for this girl and I'm going to forward this article on as well in hopes of TRYING to reach another person out there that can't look past what the neurologists might be saying.
Thanks again for printing this.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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