As a single mother, Janet moved to Florida after divorce in 2005. Shortly after the move, she suffered from what she thought to be the flu, but it wouldn't go away for months. Going from doctor to doctor to get to the bottom of why she was feeling this way, and not showing any signs of improvement, Janet was initially diagnosed with Chronic Fatigue and Fibromyalgia. Her symptoms and pain continued to worsen.
Continuing to search for help and a cure, Janet found a doctor who committed to her that he would run a comprehensive set of tests for everything under the sun. It was this doctor that finally diagnosed her with Lyme disease. By this time, she was seriously considering a wheelchair, and remained mostly confined to her bed due to the constant pain. Finally, she found a doctor who was able to treat her with IV antibiotics. This prolonged treatment took months and months, while she continued to suffer from severe pain. After 6 months of this treatment, the symptoms finally started to dissipate.
10 years later, Janet’s physician performed surgery to remove uterine cysts and endometrial tissue. Subsequant symptoms prompted more testing. Her lab tests came back positive for Lyme disease. The leg pain has continued to increase and sometimes becomes debilitating. Her doctors were hopeful that the operation might cure that, but instead, migraines, foot cramps, numbness, and temporary paralysis in her legs continue.
Because Lyme disease isn’t native to Florida and rare here, Janet hasn’t been able to find a local doctor to treat her with IV antibiotics that she needs, as her previous doctor retired. She waited seven months to see a specialist who told her that her case is fascinating because she has Lyme disease, Lupus, Hashimoto's, Fibromyalgia and a few other complicating conditions. He also agreed that she would never be able to be treated properly in Florida, and would have to go up north for a specialist knowledgeable enough to properly treat the complications of her condition.
Reaching out from one doctor referral to the next, looking for some help or to cure this illness, Janet already has incurred over $8000 in medical costs beyond her current medical insurance coverage, LAST YEAR ALONE. With the likelihood of having to travel for treatment, she’ll likely have to spend another $8000 early this year. At this point, even before any treatment is covered, Janet has to meet a new annual deductible of $3500 and is already in debt from the medical bills from last year. Instead of filing for the Disability that her doctor recommended (even stating after looking at her recent labs “how do you function?”), Janet still works full-time, loving her job and needing to work.
Outdated and outmoded treatment guidelines are still being applied to the CDC definitions (despite the fact that the International Lyme Disease Association has more up to date methodology and doesn't even recognize ours) and because of this, the long and complex treatments required for chronic Lyme disease is not fairly covered by medical insurance companies. Some of the major health insurers and the CDC deny that chronic Lyme disease even exists, although Canada and several other countries do. Fundraising is about the only way to help pay for treatment for those that haven’t won the lottery.
Janet wants to be the best mom she can be to her daughters and take care of them. She isn’t the type of person to ask for help, but she needs a miracle. Please help!