Lyme disease: Misery, and mysteries, persist

Summer is the time of the year when people face the highest risk of contracting Lyme disease. Long prevalent mostly in the Northeastern U.S., cases of the tick-borne disease have started occurring more frequently in other parts of the country as well.

Last summer the CDC said 300,000 people get infected with Lyme disease each year -- 10 times the number previously reported. Dr. Bernard Raxlen, a Lyme disease specialist in New York, notes that while most cases still occur in the Northeast, many illnesses have also been reported in the upper Midwest, especially Minnesota and Wisconsin. The CDC said cases of Lyme disease were confirmed in almost every state in 2012.

Lyme disease is caused by a bacterium called Borrelia burgdorferi and people get it from the bites of infected deer ticks. Borrelia burgdorferi belongs to the same spirochete group of bacteria as syphilis, Raxlen said.

And with climate change and rising temperatures, his prognosis is not too optimistic.

"With the change in the temperature over the last, probably, 30 to 40 years, it has increased the rate of the tick reproduction -- so they are laying more eggs." At the same time, Raxlen said, the predators that typically feed on the ticks are becoming more scarce, which increases the likelihood that the tick population will expand.

Some of the initial symptoms of Lyme disease may include a bull's-eye rash, fever, headache and fatigue. It can be treated with antibiotics, which the CDC says is usually successful if the disease is caught in the early stages.

However, if the disease is not diagnosed shortly after a person has been infected and is left untreated, it can spread to joints, the heart and the nervous system.

"It doesn't kill you, but it squeezes every drop of life from you," Raxlen told CBS News.

That makes it especially important for people to protect themselves against infection.

How to protect yourself

Experts say, if you're going to be outdoors, especially in a wooded area where ticks may be found, use insect repellent. The CDC recommends using a product containing a 20 to 30 percent concentration of DEET on exposed skin. Another repellent called permethrin can be used on clothing and gear, and lasts through several washes.

Wearing long pants and long-sleeved shirts can also help keep ticks at bay. Tucking your pants into socks is a good idea.

Take a bath or shower as soon as possible after returning indoors, and check your skin and hair carefully for ticks.

Check your gear, too, since ticks may have hitched a ride and could bite you later. The CDC says throwing clothes in the dryer on high heat for an hour should kill any ticks.

Pets can also be carriers for ticks. Dr. Leo Galland, an internist based in New York who has treated patients with Lyme disease, warns that dogs can "smuggle" ticks into your home after a romp in a city park or a weekend getaway in the country.

And even though many people think that deer are always the "vehicle" of Lyme-infected ticks, which are known as deer ticks, Galland noted that white-footed mice can also be carriers.

Treatment options

Most cases of Lyme disease cases can be treated successfully with oral antibiotics -- or, in more severe cases, intravenous antibiotics, over a few weeks.

But some people just do not get better, even after getting treated with antibiotics. "Sometimes, they are even sicker after the treatment," Galland said. Research has shown that Borrelia burgdorferi -- a "fiendishly intelligent organism," as Raxlen called it -- can actually evade antibiotics.

The CDC acknowledges that about 10 to 20 percent of patients treated for Lyme disease with antibiotics for two to four weeks, go on to develop a condition labeled "Post-treatment Lyme Disease Syndrome," which "can last for more than six months," the CDC says.

Elaina Powell, a 19-year-old blogger from New Hampshire, is one of many Lyme patients who have had trouble recovering from the disease. She was diagnosed in 2007 after experiencing symptoms such as persistent headaches, nausea and joint pain, and says her condition has not improved significantly over the years. Her symptoms got extremely serious in the summer of 2011, when she started experiencing breathing difficulties and fainting spells. "Was I going to pass out and not wake up?" she remembers thinking to herself after one of her many fainting episodes.

Many of those who, like Powell, have trouble recovering from Lyme, have also found themselves trapped in the midst of a scientific controversy surrounding the prolonged form of the disease and how it should be treated.

While some doctors believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection, others think these symptoms are a sign of persistent infection with Borrelia burgdorferi, according to the CDC. Those who think the infection persists may recommend administering antibiotics for longer periods, while other doctors argue that it does more harm than good.

"Every stage of dealing with Lyme disease is controversial," said Galland, including the tests for detecting it in the first place, which are not always reliable.

Today, Powell still feels ill, but she is planning to go to college in the fall to study for a certificate in social work, as she wants to help kids with chronic diseases.

For now, she says she finds relief in blogging and working with miniature horses, which she started as hobby to help her deal with the illness. "I love horses and I wouldn't have started working with them," if it hadn't been for the disease, she said. "That's what makes me feel something came out of this."