Original Source: http://www.cbs6albany.com/news/features/top-story/stories/-real-deal-limited-insurance-coverage-lyme-disease-27786.shtml

Updated: Thursday, August 6 2015, 05:13 PM EDT ALBANY—Lyme disease cases have soared, the CDC says there has been a 320% increase nationwide in the last twenty years.

The numbers are especially aggressive here in the Capital Region where there have been thousands of confirmed cases.  As the CDC and the NYS Health Department look for better ways to combat the disease, many folks who’ve been diagnosed say their insurance companies aren’t covering all the costs associated with their care.

For years, Lyme Disease has appeared in pocketed areas across the country, mainly in the Northeast but now it is spreading nationwide.  It’s is a bacterial infection transmitted through blacklegged ticks.  The Infectious Disease Society of America and the CDC say most cases of Lyme can be successfully treated with a few weeks of antibiotics which insurance plans cover.   At issue, seems to be patients who have persistent symptoms after the round of oral antibiotics is complete.

Steve Thorne of Glenville used to be an avid hunter, he got bit by a tick, took the medication but never got better, “I have no strength in my arms and my legs, the quivering in my voice is because of the weakness in my body,” he tells CBS6.  He saw a number of specialists, “my neurologist took me in a private room and he put his arm around me and said, Steve, go find the best Lyme doctor you can.  They thought I had Parkinson’s, then they thought it was MS, and then ALS and this is everybody…My story is not unique at all,” he says.

Those suffering from similar symptoms after being diagnosed with Lyme look toward long-term IV antibiotics for relief but right now, insurance providers do not cover the cost. Patients like Thorne pay $800-$1000 a month out-of-pocket for the IVs because without them they say, they have no quality of life, “emotionally and financially draining, it’s torn my family apart, it’s left me without friends, it’s taken every ounce of energy I have just to go through the day, I need this medication,” Thorne says.   “To date, there is no science that supports long-term antibiotics as being a treatment…I know that there are patients and I know that there are some doctors who believe it but there does not seem to be either the medical support for it or the scientific evidence,” says Paul Macielak, President of the New York Health Plan Association which represents insurers.

With the CDC’s recent report on how quickly Lyme Disease is spreading, it is likely the National Institute of Health will get additional funding to research the disease.  “It’s a complex condition, some of what are alleged as some of the symptoms long-term, I think will generate more study and then I’m sure there will be an evolution in terms of what the view is from the medical profession,” says Macielak.

Thorne says an “evolution” in coverage of the disease, can’t come soon enough, “hopefully in the future people won’t go through this, they won’t have to endure it,” he says.