Great Article about Chronic Lyme Disease

Woe to those with chronic Lyme disease
Legislation needed to protect doctors who treat stricken patients

Nov 21, 2007 - 10:04:11 CST.

by Debra Neutkens
Staff Writer


FOREST LAKE — An insidious, chronic disease is creeping into the Forest Lake area and those suffering its debilitating effects are hard-pressed to find treatment.

A "fear factor" exists among doctors who prescribe long-term treatment for patients with Lyme disease. They worry the state medical board (the official name is the Minnesota Board of Medical Practice) will pull their license or slap sanctions against them if antibiotics are given longer than usual.

So sufferers of the bacterium-infected tick bite are rallying support to fight what the president of the Lyme Disease Association calls "a social injustice."

Advocate Pat Smith is a national expert on tick-borne disease. She spoke to politicians and community members recently on behalf of the Minnesota Lyme Action Group, a small, but determined local support group founded by Forest Lake resident Ann Myre.

Their message is simple: Lyme disease is on the rise. Awareness is not.
According to Smith, the nemesis residing in the tiny deer tick that causes Lyme, Borrelia burgdorferi, is becoming established in areas of the state not previously considered high-risk.

And the bad news: the disease is endemic in Forest Lake, meaning highly prevalent.

But Lyme often goes undiagnosed and untreated. Tests are inaccurate, leaving some unlucky victims to fend for themselves because their blood test was negative.

Even those with positive results continue to live with chronic joint pain, heart trouble or neurological damage because most physicians in the state refuse to prescribe long-term antibiotics - about the only remedy to treat chronic Lyme.

City Administrator Chip Robinson can relate to the issue. An avid outdoorsman, Robinson has long suffered neck pain, muscle pain, headaches and an inability to concentrate — all classic signs of Lyme disease.




"I've never found answers to why I have these symptoms. They were just always there and I've learned to live with it," said Robinson. Like 30 to 50 percent of cases, he never had a rash. Only a small number of patients have the telltale "bullseye" rash.

Results from Robinson's Western blot test, a popular blood test that detects Lyme antibodies, was inconclusive, he said. "I was told CDC (Centers for Disease Control) guidelines indicate I don't have Lyme."

Unfortunately, the blot test is complex. The CDC set arbitrary criteria for considering the test positive and it misses many people, said Smith.

Not to be dissuaded, Robinson's strong symptoms keep him on a quest to find a physician willing to treat him long term.

There are less than a handful of doctors in Minnesota who treat Lyme patients. Most Lyme-literate physicians practice in the northeast. The Forest Lake activist group says there are a few doctors in Missouri and California and one in Louisiana, as well.

Robinson made an appointment with a physician knowledgeable about the disease, but his appointment was canceled when his test came back negative. That doctor will take patients only if they have a positive reading using the strict CDC criteria for Western blots.

And there's the rub. The Western blot tests for antibodies against the Lyme bacterium. Yet, during the first year after a tick bite, less than 65 percent of patients produce antibodies and they may not last. By year two, less than 50 percent will have a response.

People suffering from unsuspected Lyme disease are often misdiagnosed as having MS, Parkinson's disease, ALS, Alzheimer's, chronic fatigue, fibromyalgia, Crohn's disease, lupus, autism or a wide variety of psychiatric disorders.

The common treatment for Lyme disease is a two-to-four week course of an oral antibiotic like doxycycline. However, it is not known if this permanently cures the disease. Some patients require IV administration of antibiotics through lines implanted in their chest.

At the special forum held by the support group Nov. 13, Forest Lake Mayor Stev Stegner agreed the issue demands increased awareness.




But more than that, the Minnesota group is looking for state legislation that will allow doctors to treat Lyme disease appropriately and on an individualized basis.

Specifically, they're asking representatives to consider adopting a bill similar to one passed in Rhode Island that protects doctors who treat patients long term for Lyme and other tick-borne diseases against medical board investigations based solely on the use of prolonged courses of antibiotics.

"We need local politicians to take action," said Dr. Betty Maloney, a family practitioner from the Forest Lake area who has late Lyme. "This problem is real. The medical board is very powerful in Minnesota and this forum needs to flex some political muscle. We need a bill."

State Representative Bob Dettmer, Senator Ray Vandeveer and Sean Nienow, district director for Congresswoman Michele Bachmann, attended Smith's presentation. Members of the action group hope to work with the legislators to push a bill through, not an easy task, said Vandeveer, who promised to "assess the climate."

Maloney is a precious resource for the area when it comes to Lyme. She left her practice at the Allina Clinic in 2005 due to Lyme's debilitating effects, but is on the road to recovery and now advocates for Lyme patients. She helps them find resources and get tested, and is willing to talk to their personal physician. "It is encouraging to me that physicians who once could not believe Lyme had so many manifestations now are looking at illnesses they could never identify and finding patients are positive for Lyme."

Treating physicians have their hands tied, she added.

The doctor Robinson wanted to see, for example, is a "Lyme friendly" who is under pressure to not treat infected patients with long-term antibiotics, Maloney told the group.

"He'll only take people with a CDC positive test. And a negative test does not mean you don't have Lyme disease."

According to the Forest Lake doctor, late Lyme cases in the area are mostly neurologic. The screening test for Lyme is very good at picking up patients with Lyme-induced arthritis, but not those with neurologic problems, which may explain why some test results prove false.

Is resistance a factor in the hesitance to use antibiotics long term? "That has been used as an excuse not to prescribe long-term antibiotics," Maloney replied, "but physicians are misinformed. They will prescribe the same long-term antibiotics for acne in teenagers. And there has been no resistance found in this Borrelia species."

Smith calls the Lyme dilemma "a war. There is no way to stop ticks. We need a nationwide effort and people are not sitting at the same table. We need to communicate. Patients aren't able to get treatment.

"There is a society of physicians opposed to treating Lyme," she said. "I travel all over the U.S. talking to groups. People suffering from Lyme are not making this up. They all have the same stories and they are sick. No one is advocating for them and it's a huge social injustice."

Anyone wishing more information can visit the Minnesota Lyme Action Group Web site at www.minnesotalymeactiongroup.com. President Jill Kuschel can be reached at 651-213-1200. Smith's Web site is www.LymeDiseaseAssociation.org.

Press Publications, White Bear Lake, Minnesota
by Debra Neutkens Staff Writer