Marissa's Lyme Disease Defense
Donation protected
Marissa is a 20 year collage student full of life with a laugh and smile that is contagious. Behind that smile, you would never know that she is suffering daily with pain that courses through her body. Her health is continuing to deteriorate and we are doing everything within our power to put a stop to that NOW.
Marissa started off with foot and calf pain at the age of 11 and had two surgeries on her right foot. When the pain then climbed to her back and hip joints, she was checked for arthritis. Then came the full body muscle spasms that kept her awake at night. She began feeling complete pain throughout her entire body. Following these symptoms, she underwent many tests and surgeries to try to find out the issue and still no answers came. She went to Vanderbilt Hospital and they gave her a diagnosis of Fibromyalgia and began to medicate her for it but nothing helped. She was placed on a strict diet but still no relief was found for the pain that overtook her body. She has even begun bizarre neurological symptoms and memory loss. Yet, she continues to dance! Nothing can dampen her spirit! Only recently was Marissa diagnosed with the true culprit, Lyme Disease, and have we been able to outline a treatment plan to get her on the road to a full recovery. Unfortunately, that treatment plan involves Marissa undergoing 9 months of IV antibiotic treatment as well as traveling frequently to receive treatment. Alabama does not require insurance to cover medical treatment for Lyme disease and facing such astronomical costs has been truly overwhelming.
CURRENT TREATMENT GUIDELINE
The treatment guidelines that were drafted by the Infectious Disease Society of American (IDSA) and adopted by the CDC and most, if not all, health insurance companies, call for 30 days of antibiotic treatment for chronic Lyme disease. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme. On the contrary, much medical literature has been published in both the United States and Europe demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme bacteria and that short treatment courses result in upwards of a 40% relapse rate, especially if treatment is delayed.
The International Lyme and Associated Diseases Society (ILADS) has advocated a second standard of care that differs from the IDSA standard of care. ILADS and its members have advocated for the following changes to be made to those guidelines promulgated by the IDSA and CDC:
Since there is currently no definitive test for Lyme disease, laboratory results should not be used to exclude an individual from treatment
Lyme disease is a clinical diagnosis and test should be used to support, rather than supersede the physician’s judgment.
The early use of antibiotics can prevent persistent, recurrent and refractory Lyme disease.
The duration of therapy should be guided by clinical response, rather than by an arbitrary (i.e., 30 day) treatment course.
By adopting these changes, physicians will no longer fear prosecution from their medical boards for treating Lyme beyond 30 days, patients will no longer be denied care and they will no longer have to battle their insurance companies for coverage of treatment.
Marissa started off with foot and calf pain at the age of 11 and had two surgeries on her right foot. When the pain then climbed to her back and hip joints, she was checked for arthritis. Then came the full body muscle spasms that kept her awake at night. She began feeling complete pain throughout her entire body. Following these symptoms, she underwent many tests and surgeries to try to find out the issue and still no answers came. She went to Vanderbilt Hospital and they gave her a diagnosis of Fibromyalgia and began to medicate her for it but nothing helped. She was placed on a strict diet but still no relief was found for the pain that overtook her body. She has even begun bizarre neurological symptoms and memory loss. Yet, she continues to dance! Nothing can dampen her spirit! Only recently was Marissa diagnosed with the true culprit, Lyme Disease, and have we been able to outline a treatment plan to get her on the road to a full recovery. Unfortunately, that treatment plan involves Marissa undergoing 9 months of IV antibiotic treatment as well as traveling frequently to receive treatment. Alabama does not require insurance to cover medical treatment for Lyme disease and facing such astronomical costs has been truly overwhelming.
CURRENT TREATMENT GUIDELINE
The treatment guidelines that were drafted by the Infectious Disease Society of American (IDSA) and adopted by the CDC and most, if not all, health insurance companies, call for 30 days of antibiotic treatment for chronic Lyme disease. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme. On the contrary, much medical literature has been published in both the United States and Europe demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme bacteria and that short treatment courses result in upwards of a 40% relapse rate, especially if treatment is delayed.
The International Lyme and Associated Diseases Society (ILADS) has advocated a second standard of care that differs from the IDSA standard of care. ILADS and its members have advocated for the following changes to be made to those guidelines promulgated by the IDSA and CDC:
Since there is currently no definitive test for Lyme disease, laboratory results should not be used to exclude an individual from treatment
Lyme disease is a clinical diagnosis and test should be used to support, rather than supersede the physician’s judgment.
The early use of antibiotics can prevent persistent, recurrent and refractory Lyme disease.
The duration of therapy should be guided by clinical response, rather than by an arbitrary (i.e., 30 day) treatment course.
By adopting these changes, physicians will no longer fear prosecution from their medical boards for treating Lyme beyond 30 days, patients will no longer be denied care and they will no longer have to battle their insurance companies for coverage of treatment.
Organizer and beneficiary
Scarlet Tucker Jones
Organizer
Harvest, AL
Scarlet Jones
Beneficiary