Lyme Disease Challenge’s third year is off to a good start
While the primary goal of the Lyme Disease Challenge is to spread much needed awareness, we are also raising funds to benefit the International Lyme & Associated Diseases Educational Foundation (ILADAF), a 501(c)(3) non-profit of ILADS Lyme Society.
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Bell adds, “Social media has provided Lyme sufferers with a virtual lifeline for support, as well as a platform for advocacy to bring about greater awareness. Advocacy is critical considering how many patients, including children, are slipping through the cracks while we wait for adequate research funding to develop more reliable diagnostic tests and more effective treatments for late stage Lyme disease and co-infections.”
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Challenge co-organizer and New Yorker Lisa Kilion remarks: “As a parent and a teacher, I am very concerned with the effect of Lyme disease on our children. Children stricken with Lyme appear to be ‘normal’ on the outside and are judged accordingly, yet can suffer from headaches, light/sound sensitivity, joint pain, brain fog, depression and memory issues. Even the majority of the medical community does not yet comprehend the enormity of these children’s trials…and their strengths.”
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With your help, we truly can make a meaningful difference for the millions suffering from Lyme disease.
I have had LD since June 1990 after walking through high grasses in a local state park in SE PA. Immediately thereafter I developed a mysterious pattern of daily fevers, sore throats, environmental allergies, violent migraines with projectile vomiting as well as unexplained pronounced fatigue, severe muscle spasms and changed my schedule from full-time nursing to every other day and coped the last several years through using darkened glasses for the photosensitivity, using SC Imitrex injections for the migraines, got injections of steroids in my hips for the limping, used my heating pad whenever possible at work, and took an early retirement from the government in 1996. The CDC said that my LD test, which my PCP had scheduled daily IVs for, was in fact a false positive because a specific KDA titer was negative, and I was referred to a rheumatologist, who within 5 minutes diagnosed me with fibromyalgia. Between 1990-2015 I spent thousands in treatments at pain clinics, physical and muscle release therapy, ineffective SRRI’s, IV nutriments until I requested another LD test 15 months ago and was diagnosed promptly with Lyme and treated 3 times with oral Doxycycline. Last September I showed a new bullseye rash to an ILADS physician and received 100 days of IV’s and oral antibiotics with virtual disappearance of my daily migraines and peripheral neuropathy. I felt much more energized for several months, but despite an adherence to a clean diet, my muscle spasms and fatigue have worsened, and a second local ILADS physician will see me today. She will be expensive because of not accepting any insurance but does not use IVs, and I hope for a more naturopathic solution this time with better results. I undestand that my fibromyalgia is secondary to Lyme and may be chronic in nature. I use my experience to help educate all of the importance of Lyme prevention and increased funding for medical research and treatment.
Btw, I was quite successful educationally and professionally before getting sick and have persevered this well thanks to the support of family and friends.
Jan Kane
BSN