Press Releases
P.A.N.D.O.R.A, Inc. CFS/ME Announcement
October 31, 2008
The Lanford Foundation-Lifelyme, Inc., a non-profit Charity, and independent Lyme advocacy group is proud to announce
that we have accepted an invitation to partner with PANDORA, the Patient Alliance for Neuro Endocrine Immune
Disorders Organization for research and Advocacy in Miami, Florida. Lifelyme believes that by our mutual collaboration
with PANDORA, who have embraced Chronic Lyme disease (CLD) we can work together successfully in raising the level of
awareness to effectively challenge the problems affecting chronic illnesses. PANDORA and LIFELYME place many chronic
illnesses under one umbrella - Neuro-endocrine-immune-disorders (NEIDs). NEIDs include patients diagnosed with
CFS/ME, Gulf War Syndrome, Multiple Chemical Sensitivity and Chronic Lyme Disease.
LIFELYME and PANDORA share several goals. Our first goal is to establish a Neuro-endocrine-immune-disorder
Institute in Florida, and secondly to organize in the near future a Congressional Caucus for NEIDs.
Article published Jun 4, 2007
Tick Time: Be alert for the bloodsucking pests
By Mary Leslie
DEMOCRAT STAFF WRITER
As summer approaches and Tallahasseeans spend more time outdoors, area residents should be on alert for a threat - one that's smaller than a dime.
The cunning, blood-sucking tick, which can carry Lyme disease, is a swift-breeding problem in Florida, and it's not just one for the dogs.
Lyme disease is the most prevalent bug-borne illness, and according to the Centers for Disease Control and Prevention, new cases are reported in about 20,000 people yearly, and it's believed that this number is sorely underestimated.
The Lyme bacteria (Borrelia burgdorferi) entrench themselves deep within tissues and migrate throughout the body, hiding from the immune system. The disease can cause joint pain, heart disease, brain inflammation and a host of other complications if left untreated.
It's often misdiagnosed as lupus, multiple sclerosis, rheumatoid arthritis or a psychiatric disorder and can be incredibly debilitating without proper medication.
Sandi Lanford lives with chronic Lyme disease and is the director of Lifelyme Inc., a local support group. Last week she was named an Advocate Extraordinaire by PANDORA, a Miami-based support group for sufferers of chronic fatigue, fibromyalgia, Lyme and others, for her work with Lyme disease.
There's a brochure in the Maclay Gardens' welcome office that advises hikers of the presence of ticks and chiggers, a publication courtesy of the Department of Environmental Protection.
The Lifelyme group has around 200 members who meet regularly at the Tallahassee Senior Center to talk about their experiences, research into new ways to treat the disease and other Lyme-related topics.
"It's great to be able to talk to people who are knowledgeable about the subject and can empathize," said member Melinda Recchi, who contracted Lyme disease in April 2006. "I don't know what chaos my life would be right now if not for Lifelyme."
The Lifelyme Web site has received more than 60,700 hits (visits) since February.
While greater public awareness has resulted in more frequent diagnosis of the disease, that wasn't the case when Lanford first started exhibiting symptoms - a rash on her hands and feet - at age 12. Her pediatrician thought that she might have syphilis and put her on antibiotics.
"They worked, and the rash disappeared," she said. "But after that I suffered with mild panic attacks, fatigue and mild depression. I also had problems with dyslexia."
Lanford said no one paid any attention to her complaints, and she continued to struggle silently for 27 years.
Later in life, she was diagnosed with chronic fatigue, fibromyalgia and lupus. She wasn't diagnosed with Lyme until Joanne Whitaker, the developer of the Bowen Q-RIBb test for Lyme disease, visited Tallahassee for a lecture.
"My Bowen Q-RIBb test for Lyme disease was positive," said Lanford. "All the other tests I had taken before, the Western Blot, ELISA and LUAT, were all negative."
Lanford said Lyme disease is frequently misdiagnosed, and that makes it difficult to cure. There's also no single test that can indicate with certainty that a patient has the disease.
FSU football fans may remember when former Seminole quarterback Wyatt Sexton was diagnosed in 2005 with Lyme disease, which was determined to be in its later stages by Pennsylvania specialist Chandra Swami, the same doctor who treated Lanford.
Treatment varies according to when the disease is detected. If caught early, it easily can be cured by antibiotics. Treatment for chronic cases, such as Lanford's, is more complicated.
An organized group of Florida Lyme disease patients, along with doctors, advocates and constituents from around the state, succeeded in introducing legislation in 2006 for insurance-mandated coverage of long-term antibiotics and other newly developed Lyme therapies. A legislative committee recommended a substitute study bill to replace the Lyme bill, but the substitute bill was killed in session. Florida Lyme Advocacy pledged to work toward introduction and passage of a new Lyme bill soon.
The rest of the country is making efforts, too. In January, New Jersey congressman Christopher Smith introduced the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, and the Lyme & Tick-Borne Diseases Research Center opened at Columbia University Medical Center recently. It's the first center dedicated solely to tick-borne diseases.
Chandra Swami is just one of the physicians who sees patients from all over the country who cannot get an accurate diagnosis in their home state. Ray Stricker sees more than 1,000 Lyme disease patients from all over the country each year in his San Francisco office.
"I see patients who have been to 20 doctors - they're sick and have all these symptoms, but doctors say there's nothing wrong and it's in your head," said Stricker. "It can be very frustrating."
University of North Florida epidemiologist Kerry Clark cautions Floridians about the prevalence of Lyme disease in Florida.
HOW TO SAFELY REMOVE A TICK
Do not burn or apply anything to the tick.
Use fine-tipped tweezers to grab the tick close to the skin and do not twist or jerk the tick.
If you must remove the tick with your fingers, protect your hand with a tissue or glove to avoid contact with fluids.
Gently pull straight up until all parts of the tick are removed.
After removing the tick, wash hands with soap and water.
Clean the bite with an antiseptic, such as iodine scrub or rubbing alcohol.
If there are signs of illness such as rash or fever, see your doctor.
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