"In 2012, my son Rowan suffered a tick bite and was given an ELISA (enzyme-linked immunosorbent assay) test that was negative," she said. "But when his symptoms grew worse, I insisted he get a Western blot blood test. It was sent to an independent lab and according to CDC standards, the test showed he had both Lyme disease and Bartonella."
Coleman Morse said several states have passed laws mandating that doctors tell patients that the Lyme disease testing they've received is unreliable. She said Virginia passed a law requiring doctors to tell patients who've tested negative for Lyme disease that they may actually have the disease.
Though there is no vaccine or cure for Lyme disease, symptoms can often be controlled if the proper treatment can be found and administered early.
"It varies from person to person," Coleman Morse said. "My son and I have found that a diet free of sugar, carbohydrates and gluten inhibits the bacteria's food source and also strengthens our immune systems."
Coleman Morse said because Lyme disease bacteria reproduce every 30 days, and because the bacteria can spread to vital organs, the earlier a person is diagnosed and treated, the better the outcome.
"There's a big controversy now about how long the tick must be on you to transmit the bacteria," she said. "For years, doctors said it has to be on you for 24 to 48 hours, but now some doctors are saying there is no safe window."
Coleman Morse said those with Lyme disease often face financial stress, because many of the most effective treatments for the disease are not covered by insurance.
"The guidelines that insurance companies use are established by the Infectious Diseases Society of America, which does not support the types of treatments that Lyme-literate doctors use," she said. "Some have even lost their license for practicing outside the society's guidelines."
Coleman Morse said she spends about $1,000 a month, out-of-pocket, for her IV antibiotics and oral medications. Family and friends have organized some fundraisers on her behalf to help her with those expenses.
Information from: The Herald Times, http://www.heraldtimesonline.com
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