Strange Rash Causes Alarm
Sixteen-year-old Jimmy Nonas has a mysterious rash that looks like inflamed stretch marks. His brother, Andrew, and sister, Athena, have also it. Extreme exhaustion and crippling pain have forced all three to leave school.
"It's all over my stomach and on my back," he tells CBS2's Paul Moniz. "It's all over my legs, tops of my shoulders, everywhere. My knees are killing me. I stand up and they crack and I walk and they crack."
At first, doctors were at a loss to explain the syndrome. The symptoms also include vision loss, confusion, and depression. At least ten young people aged 14-23 in the rural community of West Milford, New Jersey, have reported the wavy red discolorations. These cases are causing alarm.
"I see my children losing their whole teenage lives," mother Adora Nonas says of Jimmy, Andrew, and Athena.
"It scared me," says Cynde Levans, whose son has the rash. "My first reaction was to call a dermatologist."
Most patients have been diagnosed with Lyme disease, presumably from the bite of a deer tick, but the wavy lines look nothing like the bulls-eye rash characteristic of Lyme disease; and despite getting the standard treatment for Lyme disease, patients had been slow to improve.
Sixteen-year-old Harrison Levans has missed 2 1/2 years of school because of excessive sleepiness and confusion.
"Sometimes I will forget where I put my medication or sometimes I will walk into a room and forget why I am there," he says.
Most people are aware that tick bites can be dangerous, especially in wooded areas around much of the Northeast, but doctors say there are many misconceptions. For instance, Lyme disease can be difficult to detect and treat. What's more, tick bites may cause other infections.
Lyme disease specialist Dr. Richard Horowitz of Poughkeepsie, New York, studies deer ticks. He suspects the strange rash is somehow related to either Lyme disease or other lesser-known infections. He says deer ticks can release a bacteria that attacks white blood cells, causing an infection called ehrlichiosis.
"It's not just Lyme disease that has entered their body," he explains. "These ticks are containing multiple organisms. I'm extremely concerned about this because these tick-borne diseases are spreading."
Ticks can also carry a parasite that invades red blood cells, causing a more serious infection known as babesiosis. Many doctors do not test for those infections.
The parents of the sick teens say they have been misdiagnosed many times.
Sixteen-year-old Don Mobius spent 10 days in a psychiatric ward for depression actually caused by a tick-borne infection. It was Harrison Levans' mother who urged the Mobius family to get the right blood tests after spotting the wavy rash. It turned out that Don had all three of the tick borne infections.
"She saved my son's life because she told us what was wrong with him when doctor's couldn't," says Bonnie, Don's mother.
Now, after getting antibioics and antimalarial drugs, Don is starting to feel better. So is Harrison, who was also triple-infected.
Dr. Horowitz says the tiny deer ticks may prove to be much more of a hazard than anyone ever imagined.
"There may be other viruses or other parasites that are getting into these people's blood that we don't know about at this point," he explains.
Patient advocates are calling on Congress to set aside more money for research and treatment of Lyme-related infections. Part of the problem is that blood tests are not always reliable. Patients might have Lyme disease or the other co-infections even when a blood test comes up negative.
If you think you have Lyme disease or a related infection, ask about DNA blood testing and make sure to see a specialist.
©MMII CBS Worldwide Inc. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed