The Adirondack Lyme Disease
Foundation, Inc.
Adirondack Lyme Disease Foundation
Our Stories
WILTON — Dealing with ticks is to be
expected living in the Northeast, but living with Lyme disease is
something few people give any thought.
Linda and Sigmund Kwiatowski were much the same way until Sig was bitten several years ago.
The couple never saw the tick but instead noticed the “bulls eye” rash that is often associated with tick bites. Sig went to the doctor and began three weeks of treatment.
“But then he got worse,” said Linda. “Over a two year period we ended up going to 15 doctors and two physician assistants.”
The Center for Disease Control and Prevention Web site, www.cdc.gov, states most cases of Lyme disease can be cured through the use of antibiotics, but a small percentage of patients with the disease may continue to have symptoms that last months to years after the antibiotic treatment.
Making diagnosis and treatment more difficult, the CDC said the Lyme disease bacterium “can infect several parts of the body, producing different symptoms at different times.”
Not every patient experiences the same set of symptoms and many are similar to symptoms of other diseases.
Sig lost a total of 54 pounds and suffered through at least three different co-infections on top of the Lyme disease. Linda said their situation is not an unusual one, with many long-term sufferers of the disease struggling to find what Linda calls “Lyme literate doctors.”
“Lyme disease can mimic like 40 different diseases,” Linda said.
She said the couple’s experience has led them to a local support group.
The Adirondack Lyme Disease Foundation meets monthly at the Saratoga Springs Public Library.
“We share information and gather stories,” Linda said. “Just trying to get more people to realize it isn’t just them. A lot of people just don’t have anyone to talk to.”
In addition to serving as a forum for those afflicted with Lyme disease to share their stories and successes the group, led by Linda McCallister, is also leading the charge to change laws related to the illness.
The group wants to see doctors better educated about the disease and more aggressive in its diagnosis and treatments.
Approximately 95 percent of the reported cases of Lyme disease in the country come from approximately 12 states in the Northeast.
In 2008, New York State had 5,741 confirmed cases of Lyme disease. The CDC Web site keeps data on confirmed cases dating back to 1999. With the numbers beginning at 4,402 in 1999 and decreasing until a major jump in 2002 to 5,535. The number remained at that level until 2006 and 2007 when they returned to under 5,000.
The CDC recommends using insect repellent and appropriate landscaping to prevent the disease. They also said prompt removal of ticks from your body may limit the risk of infection. Removal should be done with fine-tipped tweezers.
Grasp the tick very close to your skin and pull the tick’s body away. Clean the area with soap and warm water.
Every effort should be made to avoid crushing the tick’s body. Once the mouthparts are removed from the body of the tick the Lyme disease bacteria can no longer be transmitted.
Linda Kwiatowski said she and her husband will live with his Lyme disease forever. Some days are better than others.
For them, what is important now is to help create a movement of awareness about the dangers of Lyme disease and best practices methods for treatment.
“As we go along we’re learning more,” said Linda Kwiatowski. “It’s an epidemic. We need to make everybody more aware of this.
http://www.saratogian.com/articles/2009/10/10/wglife/doc4ace31efbe02b058790138.txt
Please feel free to share your Lyme stories with us. We would like this page to be a diary of our friends and neighbors survival stories.
What does Lyme disease mean to you?
What has it done to change your life?
What have you learned from suffering with this illness?
How has Lyme disease affected you and your family and relationships?
What treatment has helped or hurt you?
Share your story with us here.
Please come back soon, stories will be published online in the coming weeks.
Please send all story submissions to info@adirondacklymediseasefoundation.com
"Never doubt that a small group of thoughtful,
committed citizens can
change the world; indeed, it's the only thing that ever has."
Margaret Mead
Under Our Skin Lyme Disease Movie Trailer
Linda and Sigmund Kwiatowski were much the same way until Sig was bitten several years ago.
The couple never saw the tick but instead noticed the “bulls eye” rash that is often associated with tick bites. Sig went to the doctor and began three weeks of treatment.
“But then he got worse,” said Linda. “Over a two year period we ended up going to 15 doctors and two physician assistants.”
The Center for Disease Control and Prevention Web site, www.cdc.gov, states most cases of Lyme disease can be cured through the use of antibiotics, but a small percentage of patients with the disease may continue to have symptoms that last months to years after the antibiotic treatment.
Making diagnosis and treatment more difficult, the CDC said the Lyme disease bacterium “can infect several parts of the body, producing different symptoms at different times.”
Not every patient experiences the same set of symptoms and many are similar to symptoms of other diseases.
Sig lost a total of 54 pounds and suffered through at least three different co-infections on top of the Lyme disease. Linda said their situation is not an unusual one, with many long-term sufferers of the disease struggling to find what Linda calls “Lyme literate doctors.”
“Lyme disease can mimic like 40 different diseases,” Linda said.
She said the couple’s experience has led them to a local support group.
The Adirondack Lyme Disease Foundation meets monthly at the Saratoga Springs Public Library.
“We share information and gather stories,” Linda said. “Just trying to get more people to realize it isn’t just them. A lot of people just don’t have anyone to talk to.”
In addition to serving as a forum for those afflicted with Lyme disease to share their stories and successes the group, led by Linda McCallister, is also leading the charge to change laws related to the illness.
The group wants to see doctors better educated about the disease and more aggressive in its diagnosis and treatments.
Approximately 95 percent of the reported cases of Lyme disease in the country come from approximately 12 states in the Northeast.
In 2008, New York State had 5,741 confirmed cases of Lyme disease. The CDC Web site keeps data on confirmed cases dating back to 1999. With the numbers beginning at 4,402 in 1999 and decreasing until a major jump in 2002 to 5,535. The number remained at that level until 2006 and 2007 when they returned to under 5,000.
The CDC recommends using insect repellent and appropriate landscaping to prevent the disease. They also said prompt removal of ticks from your body may limit the risk of infection. Removal should be done with fine-tipped tweezers.
Grasp the tick very close to your skin and pull the tick’s body away. Clean the area with soap and warm water.
Every effort should be made to avoid crushing the tick’s body. Once the mouthparts are removed from the body of the tick the Lyme disease bacteria can no longer be transmitted.
Linda Kwiatowski said she and her husband will live with his Lyme disease forever. Some days are better than others.
For them, what is important now is to help create a movement of awareness about the dangers of Lyme disease and best practices methods for treatment.
“As we go along we’re learning more,” said Linda Kwiatowski. “It’s an epidemic. We need to make everybody more aware of this.
http://www.saratogian.com/articles/2009/10/10/wglife/doc4ace31efbe02b058790138.txt
Please feel free to share your Lyme stories with us. We would like this page to be a diary of our friends and neighbors survival stories.
What does Lyme disease mean to you?
What has it done to change your life?
What have you learned from suffering with this illness?
How has Lyme disease affected you and your family and relationships?
What treatment has helped or hurt you?
Share your story with us here.
Please come back soon, stories will be published online in the coming weeks.
Please send all story submissions to info@adirondacklymediseasefoundation.com
"Never doubt that a small group of thoughtful,
committed citizens can change the world; indeed, it's the only thing that ever has."
Margaret Mead
Under Our Skin Lyme Disease Movie Trailer
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