Medical community divided on Lyme disease

It’s called the Lyme War.

Some of the nation’s most respected medical researchers bitterly are divided over how to treat the tickborne disease.

Peggy Blumhagen, Ottawa, coordinator for the Lyme Wellness Center of Kansas, said she and others like her with Lyme disease are caught in no-man’s land while the battles rage.

Blumhagen, a former psychiatric nurse who can’t work because of the severity of her symptoms, which include severe fatigue, neuromuscular pain and weakness, said she’s had Lyme for nearly 20 years.

“If I walk into most hospitals or doctor’s office and I tell them I have Lyme, they won’t treat me,” she said. “Instead, if I told them I had a chronic bacteriological disease, they will treat me.

“When I first started seeking treatment, one doctor didn’t believe me and told me to get psychiatric help.

“... Many people in Ottawa and the area have similar horror stories, if not worse.”

The extent of the disease seriously is underestimated, she said.

Blumhagen, who is a member of a local chapter of the Lyme Disease Association, said at least 20 people in the area have had tests confirming Lyme.

However, Larry Felix, chief executive officer at Ransom Memorial Hospital, said the hospital has confirmed two cases in the area from its tests.

A study of dogs by IDEXX Reference Laboratories found 188 cases of Lyme disease in Kansas between 2000-2008, mostly in east central Kansas, Kathy White, of the Lyme Association of Greater Kansas City.  Of those, 20 cases involving dogs were in Franklin County, she said.

The laboratory said that the actual number of cases in dogs was probably much greater than that, she said.

In humans, Lyme often is missed because people and doctors miss the tell-tale rash most associated with it, White said.

And according to medical research, the rash doesn’t regularly appear following a bite by a Lyme-infected tick.

The Lyme Association of Greater Kansas City knows of at least 10 people in Kansas who have died as a result of having Lyme disease or STARI, a relatively newly discovered tick disease very similar to Lyme, White said.

Battling sides

The infectious disease society’s guidelines, based on a 2004 study in the New England Journal of Medicine and guidelines established by the U.S. Centers for Disease Control, recommends 14-day courses of oral antibiotics, with the option of 28 days or retreatment where deemed appropriate, to treat Lyme.

The guidelines cast doubts on chronic Lyme and says that there is no scientific evidence that long-term antibiotic treatment recommended by the international Lyme association works to treat Lyme.

Lyme is being over-diagnosed and the symptoms are mistaken for Lyme instead of other diseases, Dr. Gary P. Wormser, chief of the Division of Infectious Diseases at New York Medical College in Valhalla, and lead author of the infectious disease society’s guidelines, said on its Web site.

“It’s true that those kinds of symptoms can occur in Lyme disease,” he wrote. “But where the disconnect occurs is when people want to ascribe everybody with those symptoms as having Lyme disease, when they have no bona fide evidence [i.e., validated laboratory results] of the disease.”

Long-term antibiotic treatment can be medically risky, he said.

“So when you see 14 days recommended, that’s a long course relative to many bacterial infections,” he said.

Normally, local doctors treat their own patients for Lyme, Felix said.

When the hospital treats patients, RMH follows the CDC guidelines, he said.

“We’re going to follow scientific guidelines, not personal beliefs,” Felix said.

Flawed study?

The study used for the recommendation was flawed, he said. His group’s own studies are more extensive and are based on wider patient samples and are more scientific, Cameron said.

Those studies show some patients with Lyme may need long-term antibiotic treatment for one to four years, he said.

“There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease,” Cameron wrote on his Lyme Project Web site. “However there is a plethora of documentation in the U.S. and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

“Short treatment courses have resulted in upwards of a 40 percent relapse rate, especially if treatment is delayed ... The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.”

Troubled treatment

“So many patients are not being expediently diagnosed and treated, which means that they will likely go on to develop chronic disease, or those who have been diagnosed with chronic disease may no longer be able to get any kind of treatment,” Smith said.

Because clinical guidelines now drive the standard of care in this country, the CDC standards are being adopted by insurance companies and state agencies, which cite them as the reason for denying treatment, she said.

However, they have been subject to legal attack.

Richard Blumenthal, Connecticut’s attorney general, announced an anti-trust probe against the Infectious Disease Society. According to statistics, Connecticut has been a hot bed of Lyme cases.

The society and Blumenthal agreed to a settlement in which the guidelines will remain in force, the society’s Web site said.

However, the society agreed to a full medical review of its Lyme guidelines.

According to the society’s Web site, experts for the review panel will be selected in mid-October.

The disease

The bug is tenacious and once established, has the ability to trick the body’s immune system and severely weakening it, Blumhagen said. It can even affect the mind, she said. Left untreated, the disease can be fatal, she said.

“It’s called the stealth bacteria,” she said.

Researchers have identified five subspecies of Borrelia burgdorferi, with more than 100 strains found in the U.S., and 300 strains world-wide.

Although ticks are responsible for transmitting the disease to humans, Blumhagen said there is some new research that indicates that the bacteria can be passed in body fluids. She said she believes that’s how she became infected rather than from a tick bite.

Some nations involved in developing germ weapons experiment with Borrelia, she said.

Troublesome tests

Most common tests aren’t totally reliable and often generate false negatives and false positives, Blumhagen said. Instead, doctors are advised to consider symptoms as well as test results in diagnosing Lyme, which makes diagnosis tricky.

What’s also making Lyme diagnosis tricky is that researchers are finding whole ranges of unidentified tick diseases that are similar, she said.

Many area doctors are spooked by the battles among medical researchers and stick to the official, clinical guidelines, she said.

“But I want to tell doctors there are alternatives for their patients,” she said.

For a list of Internet medical and research sites on Lyme Disease, call the Lyme Wellness Center of Kansas at (785) 242-2166, she said.