This is topic "Living With Lyme" in today's Cape Cod Times in forum Medical Questions at LymeNet Flash.


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Posted by nan (Member # 63) on :
 
http://www.capecodonline.com/cctimes/livingwith13.htm

March 13, 2007

Living with Lyme
By ROBIN LORD
STAFF WRITER

Sally Russo was a standout athlete at Dennis-Yarmouth Regional High School who won field hockey scholarships to the University of Massachusetts in Amherst and, later, Miami University in Ohio.


Sally Russo of South Yarmouth is the author of "While I Was Walking," about living with Lyme disease and her struggle to have it correctly diagnosed.
(Staff photo by Kevin Mingora)

But the 27-year-old South Yarmouth resident is the first to say that the playing field was not where she fought her toughest battle.

In 2002, Russo was struck with an illness that baffled doctors, and left her crippled, enduring seizures that lasted up to 22 hours.

She was finally diagnosed with Lyme disease last year and has written a book about her long road to diagnosis and treatment.

''While I Was Walking,'' published by PublishAmerica, is expected to be in bookstores next month, she said.

''I felt somebody has to paint the picture of what Lyme can do to someone's body, especially a young healthy body,'' she said in a telephone interview last week.

Russo became ill after she graduated from Miami University in 2003. She's not sure when her Lyme disease started. Perhaps it was even a rash on her foot in 1997, or one on her arm that an Ohio doctor diagnosed as shingles.

Over the next three months, she had mouth sores, six bladder infections, several sinus infections, joint pain and fatigue - all classic Lyme disease symptoms.

''I felt like someone had poured cement through my whole body,'' she said.

But it was a mysterious convulsive disorder that left her disabled and in a wheelchair, she said. After collapsing at work one day, she was taken to Cape Cod Hospital. The diagnosis ranged from lupus, an autoimmune disease, to a muscular disease such as multiple sclerosis.

By Halloween 2004, she could not walk, she said.

Despite a negative Lyme test early on in her illness, Russo's mother, Ruth, argued to have her daughter treated for Lyme, since the disease does not always show up in blood tests.

Finally, in January 2005, confined to a wheelchair and enduring muscle spasms that had become longer and more intense, she turned to Dr. Sam Donta of Falmouth and Boston. He diagnosed Lyme disease and began antibiotic therapy.

But she also went to a movement specialist in Boston, who suspected Parkinson's and prescribed the drug dopamine. Within three weeks, she was walking again. No one could say which medication had done the trick, or which diagnosis was accurate.

In January 2006, she saw a neurologist at Columbia University.


''She called me two weeks later and said, 'You are so loaded with Lyme disease, I can't believe it,''' Russo said. ''It was the best phone call I've ever gotten.''

Russo's athlete's determination has helped her push through her despair, she said. She continues to make progress, and sees a day when she will be able to focus full time on her future as a writer.

''I had this whole life ahead of me, and now I'm fighting through one day at a time.''

*this story makes it sound like Sally's book is totally about her struggle with lyme. The last few chapters deal with her struggles with lyme. She is in our support group and we are seeing slight improvement, tho she has a long way to go.

She's been though so much and we all admire her for her strength and courage.....something I have found to be true for most of us suffering with this nightmare.
 
Posted by Lioness (Member # 10655) on :
 
Thanks for posting nan. I will keep an eye out for the book.
 


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