SUE FOX: DIAGNOOSIN TEKO VIIVÄSTYI

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001

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Liittynyt: Ma Tammi 26, 2009 23:13

SUE FOX: DIAGNOOSIN TEKO VIIVÄSTYI

Viesti Kirjoittaja Bb » Su Helmi 01, 2009 15:06

Sue Fox sairasti vuoden ajan fatiikkia, lihaskipuja ja muistiongelmia ennenkuin hän sai oikean diagnoosin - borrelioosin. Tätä ennen hänen kerrottiin sairastavan kroonista väsymysoireyhtymää ja fibromyalgiaa. Hänen ystävänsä alkoi epäillä borrelioosin mahdollisuutta ja tätä kautta Fox alkoi selvitellä asiaa tarkemmin.

Foxilla oli ollut ihomuutos vuonna 1992. Silloin hänelle tehtiin borrelioositestit jotka olivat negatiiviset. Hän sai varmuuden vuoksi antibioottihoidon 2 viikoksi. Hoidon loputtua oireet voimistuivat. Diagnoosi varmistui vuonna 1993. Foxin äidillä diagnosoitiin alzheimerin tauti. Myöhemmin hänen huomattiin sairastavan borrelioosia. Alzheimerin mahdollisuus poissuljettiin myöhemmillä lisätesteillä.


http://www.goupstate.com/article/200708 ... 04/-1/LIFE


Awareness is the key to treating Lyme disease

By KIM KIMZEY, kim.kimzey@shj.com

Published August 21, 2007


Sue Fox says she endured more than one year of doctor visits and pain before her illness was correctly diagnosed.

The source of the Spartanburg woman's fatigue, muscle pain and memory problems was traced to a parasite about the size of a sesame seed.

Fox had Lyme disease.

Lyme disease is a tick-borne illness that causes signs and symptoms ranging from a rash and flu-like fever and body aches to joint swelling, weakness, fatigue and temporary paralysis, according to the Mayo Clinic.

The illness is spread by infected deer ticks, Eastern black-legged ticks and Western black-legged ticks.

The White House disclosed just earlier this month that President Bush was treated for Lyme disease last year.

White House spokesman Scott Stanzel was quoted by CNN as saying that the illness had been resolved.

A 14- to 21-day course of antibiotics is usually recommended for treatment of Lyme disease in its early stages, according to the Mayo Clinic.

Lyme disease can spread to the rest of your body if not treated. Arthritis and nervous system problems could develop. Other late-stage symptoms include memory loss, difficulty concentrating and changes in mood and sleep habits.

There were more than 23,000 cases of Lyme disease reported in the United States in 2005, including 15 cases reported in South Carolina, according to the Centers for Disease Control and Prevention.

People who live in the northeastern and upper Midwestern states, and the northern Pacific coast of California, are at higher risk for Lyme disease, according to the CDC.

The number of infections could be much higher since the number of Lyme disease cases is under-reported.

Fox is vice president of the Lyme Disease Network of South Carolina, a nonprofit group that works to raise awareness of Lyme disease and offer patients support.

"I was initially diagnosed with chronic fatigue and fibromyalgia," Fox remembers.

A friend suggested she could have Lyme disease.

"He said, 'Have you had any unusual rashes?' I said, 'Yeah, last spring.' "

Fox first noticed her rash in March 1992. She thought little of it at the time. But by the end of that summer she had "hit rock bottom. I knew I had to find out what was going on."

By August she was searching for answers and says she was almost bedridden with pain.

"I just kept hitting brick walls."

Fox e-mailed the Herald-Journal a chronological outline of her doctors' visits from August of 1992 to October 1993.

In her e-mail, she writes that she tested negative for Lyme disease in September 1992. That month she also visited an infectious disease doctor. That October, Fox did receive a two-week prescription of antibiotics for "probable Lyme." She said her health went downhill fast after treatment.

Other visits ensued. She saw two more infectious disease doctors, a neurologist, rheumatologist and a couple other physicians.

"I really stood up for myself. With this illness, you have to be your own advocate and just keep going door to door until you get the answers and the treatment you need," Fox said.

She was finally diagnosed with Lyme disease in October 1993.

Fox said many other Lyme disease patients have told her that their illness was misdiagnosed, too.

Fox said her own mother was misdiagnosed with Alzheimer's before a specialist diagnosed her with Lyme disease. Alzheimer's was ruled out with further neurological tests, according to Fox.

Her mother is now 83 and in an assisted living home.

"It's hard to know at this point how much of it is the Lyme and how much of it is normal dementia," Fox said.

Fox continues to receive treatment out-of-state and takes antibiotics. Her symptoms, she said, worsen when she stops treatment.

Long-term treatment with antibiotics and post Lyme-disease syndrome both remain controversial issues.

Carol Black, secretary treasurer of the Lyme Disease Network of South Carolina, was diagnosed with Lyme disease in 1992.

That's not the only connection she and Fox share.

Black said her late father was diagnosed and treated for Lyme disease - after he, too, had been misdiagnosed with Alzheimer's.

Lyme disease is sometimes mistaken for other ailments and tests don't always give accurate results.

Scientists with the National Institutes of Health are working to develop new and more reliable tests that tell when someone has an active infection.

"One of the main things we try to stress is that there are no lab tests that are 100 percent reliable," Black said.

Black answers the Lyme Disease Network of South Carolina's hotline and has received several hundred calls in the past five years.

"Some people say, 'A friend told me that I may have Lyme disease because my symptoms are like hers,' or they'll say they read something in a magazine," Black said. "Usually they suspect Lyme disease when they call, or either they have been diagnosed but they don't know where to get treatment."

Black stresses they are not doctors and cannot diagnose illnesses or prescribe treatment.

She usually refers callers to links with information on Lyme disease.

For those who can afford travel and treatment, Black refers them to specialists in Missouri, Pennsylvania, Connecticut and New York, where she said she's now receiving treatment.

Another option is to take information to your family doctor for review and ask if they would consider following the International Lyme and Associated Diseases Society's treatment guidelines.

"We see 51 to 200 cases per year in South Carolina," said Dr. Brent Rody, medical director of the emergency center at Spartanburg Regional Medical Center.

The diagnosis is often missed, Rody said, because a person might not test positive until weeks after they're bitten.

Lyme disease is probably also over-diagnosed, especially in the South, according to Dr. Bill Simpson, Medical Director of the South Carolina Agromedicine Program.

The program is a partnership of Clemson University and the Medical University of South Carolina that handles reports and clinical research of tick-borne illnesses here in the state.

Southern tick associated rash illness, or STARI, is another illness that produces a rash similar to Lyme disease, along with a short-term illness similar to early Lyme disease. But Simpson said STARI is a much more benign disease that doesn't have the long-term consequences Lyme disease does.

He said Lyme disease is "very uncommon, as far as we know.

"The numbers are difficult to obtain, but we don't believe that there are many Lyme disease infected ticks in South Carolina."

STARI is a more common tick-borne illness in the state, according to Simpson, along with Rocky Mountain spotted fever and ehrlichiosis.

"This disease is incredibly frustrating and difficult for physicians to deal with," Rody said.

Rody said it could take three to six weeks for someone to build enough detectible antibodies to the bacterium.

'You almost have to wait for characteristic skin legions," Rody said.

Lyme disease's characteristic rash is "really the best way to diagnose it."

Rody said there is a "huge variability" in the amount of time it can take for that skin rash to develop - three to 32 days after you're bitten.

And not everyone develops a rash or has any symptoms.

Rody said it's important to treat Lyme disease as early as a diagnosis can be made since "chronic manifestations of the disease can be pretty debilitating."

It's "not good medicine," he said, to randomly treat patients with antibiotics after a tick bite before a diagnosis can be made.

Doxycycline, an antibiotic often prescribed to treat Lyme disease, can cause problems with teeth formation in children.

There are other concerns with randomly prescribing antibiotics and long-term antibiotic use.

"Inappropriately prescribing antibiotics can cause a community problem with super-resistant organisms," Rody said.

Fox has also helped form a support group for area Lyme disease patients. Its next meeting is from 1 to 3 p.m. Saturday at Earth Fare in Greenville.

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