About this Blog

~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again

Saturday, September 08, 2007

are people SERIOUSLY afraid of the West Nile and Bird Flu???

The Press of Manorville & The Moriches Sept 7, 2007

Trying to take a bite out of Lyme disease---Romaine calls for tick management

http://72.32.16.161/daily/Skins/southamptonm/navigator.asp?skin=southamptonm&BP=OK


By Bryan Finlayson

Rita Mischke, a resident of Baldwin in Nassau County Long Island, was a part-time Central Park ranger and legal secretary until she became a disabled adult.
The 58-year-old unexpectedly contracted Lyme disease from a tick that latched onto her back during the summer of 1998. Several months later, in October, she started noticing a weakness in her left side. She was dancing at her 50th birthday party when she noticed she was having trouble moving.

Doctors told her that she had multiple sclerosis, a disease that gradually destroys the nervous system. However, she says she was misdiagnosed. After going through eight doctors, she was eventually diagnosed with chronic Lyme disease, which, if left untreated, can be fatal.

Ms. Mischke was diagnosed with the disease in 2003, the same year she had to stop working and go on disability. She maintains that the disease has ruined her body.

“It has taken my life away. Because of it, I lost my job and, as you can see, I can hardly walk now,” Ms. Mischke said as her helper dog, Slate, stood beside her. “I certainly hope that I will recover enough to walk on my own. If I get there, then that will be the day I do cartwheels.”

Her story was one of many shared last Thursday afternoon, August 30, during this year’s Lyme Disease Forum, an annual event held at the Suffolk County Center in Riverhead. The event, hosted by Suffolk County Legislator Edward P. Romaine, is meant to spread awareness about the disease. About hundreds from across Long Island attended.

The disease is not obscure and affects the lives of thousands on Long Island each year, Mr. Romaine said. More than 1500 cases of Lyme disease are reported to the state Department of Health every year from our Couties alone. Long Island is seen as a hot spot for ticks carrying the disease, he said.

Meanwhile, there is little the government is doing in the way of prevention. Mr. Romaine said the county spends millions on mosquito control to prevent the West Nile virus, which affects only a handful of people per year, while no money is spent on tick control.
“I can tell you that this is a serious problem,” Mr. Romaine said.

Dr. George Ruggiero, a practicing Lyme physician based in Wading River who spoke at the event, said there is a lack of training in the medical community to detect the disease in patients. He said the disease is problematic to detect because its effects vary greatly from individual to individual. Some people show extreme fatigue, while others exhibit joint pain or trouble focusing.

“Many patients are falling trough the cracks in the medical system,” Dr. Ruggiero said, stating that undiagnosed cases may be 10 times the reported number of cases. “There are so many different symptoms. That is one of the many issues you’re dealing with out in the medical field.”

Though there are doctors who specialize in Lyme disease, a majority of doctors have little training in identifying the disease. Many doctors rely on a series of blood tests to tell if a patient contracted Lyme.

Dr. Joseph J. Burrascano, an East Hampton Lyme physician who retired from practice in 2006, said there are two tests, ELISA and the Western Blot, that doctors use to identify Lyme. Neither test is very sensitive, he said. The ELISA test “if negative, doesn’t rule out Lyme,” and the same goes for the Western Blot test, Dr. Burrascano said.

He said many Lyme patients need antibiotics to combat the illness at its early stages, within several weeks after a tick bite.

Nonetheless, many patients who need antibiotics never get them because the antibody level in blood—what both tests measure to detect Lyme—might fall just short of a pre-established benchmark.

Unfortunately, many patients don’t make it that far because they don’t meet the threshold to make that test positive,” Dr. Burrascano said. “A fair [number] can have a completely normal Western Blot and still have Lyme disease.”
There are two conflicting schools of thought in the medical community that are currently battling over procedures to recognize, and treat, Lyme disease. The Infectious Disease Society of America, currently the standard in the medical community, advocates a three-week treatment period for patients diagnosed with Lyme. That is not enough time to fully treat the disease, Dr. Ruggiero said.
“This shortsightedness for the threeweek period for treatment needs to be eliminated from the thought process,” Dr. Ruggiero said, emphasizing that antibiotic treatment can take months to years. “If it is not treated completely, it will wax and wane for years and years.”

Daniel G. Hassan, 22, of Brookhaven Hamlet, Long Island, said he contracted Lyme when he was 12 years old and was only partially treated. Now his symptoms—including mild seizures and fatigue—are reoccurring, he said. He said he takes 30 pills every day, antibiotics and seizure medications

The disease forced him to reevaluate his life, he said. “It kinda made me, I don’t know, more cautious. It [made] me cherish my brain more, to use my thinking ability as much as I possibly can,” Mr. Hassan said.

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