Mysterious Lyme Disease

Here is a great article from the Chicago Sun Times. It is another story of another life affected by this cruel disease

Be well,

Richard
Begin quote:

Shedding light on the mysterious Lyme disease
Patient suffered from painful symptoms of 'the great masquerader' until specialist got a handle on disease


May 5, 2010
BY CAROL SLEZAK cslezak@suntimes.com

When Michael Plahn suddenly began feeling achy and nauseous last Memorial Day, he assumed he had the flu. But when the nausea subsided a few days later, only to be replaced by extreme joint pain and a feeling of utter exhaustion, Plahn realized he was dealing with something else. It was time to see a doctor.

What followed for Plahn was a maddening journey through a medical system that was either unable or unwilling to diagnose and effectively treat his symptoms. Plahn, 38, had no intention of becoming a pawn in a political battle between doctors and insurance companies, but that's what he and an untold number of others seem to have become. They are people suffering from a debilitating illness that some doctors recognize as chronic Lyme disease, and other doctors don't recognize at all.
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Chicagoan Michael Plahn, with infant son Oliver and fiancee Sarah Wilde, says impending fatherhood and other stressful events may have triggered his symptoms.
(Keith Hale/Sun-Times)



Plahn, a Chicagoan, lost track of the number of physicians he saw at a major Chicago hospital last summer, but remembers an internist, an infectious disease specialist, an allergist, a rheumatologist -- plus a few trips to the emergency room when his pain became unbearable. No one was able to diagnose his illness, but they all agreed that he didn't have Lyme disease.

"Early on I was given a Lyme disease test ... but I was told I didn't have it," Plahn said.

Plahn, founder of Life Skills Authorities, a company that helps people fight chemical addiction, recalls one ER doctor laughing at him.

"He said, 'I read your charts and you don't have Lyme disease,'" Plahn said. "He was insinuating that I just wanted to get pain-killers. You know, I know the signs of chemical dependency. I was worried about myself, too. But I didn't know what else to do."

Plahn's fiancee, Sarah Wilde, watched her partner go from an energetic, robust man to a sick and frightened one. His joints were swollen, his muscles hurt, his brain felt foggy. He lost 25 pounds, and most of his energy.

"He had been the picture of perfect health," Wilde said. "He'd built an entire business around helping others be healthy. And suddenly he couldn't even exercise."

Wilde, the director of partner management for Yahoo!, began researching Plahn's symptoms online, and came across something called "chronic Lyme disease." The more Wilde read, the more convinced she became that Plahn had chronic Lyme. But there wasn't a single doctor within this big-city hospital system that agreed. One specialist diagnosed "adrenal fatigue" and prescribed steroids. Another hinted to Plahn that his illness was psychosomatic.

Plahn recited the hospital's final words on the subject: "This was a strong virus of undetermined nature. He will have extreme pain for an undisclosed amount of time."

At his lowest points, Plahn remembers thinking, "Let this be cancer, so at least we can go after it and try to treat it."
'Lyme-literate' doctors

The medical profession agrees on this much: Lyme disease is caused by a spiral-shaped bacteria called Borrelia burgdorferi that's transmitted by tick bites. (The illness was named after the city of Lyme, Conn., where a cluster of the disease was found in the 1970s.) Although it has been reported most heavily in the northeastern United States, Lyme disease has been reported in every state, and across the globe. It can affect the skin, joints, heart and nervous system. Oral antibiotics are the standard treatment for early-stage Lyme disease.

Beyond that, things get tricky. According to the International Lyme and Associated Diseases Society, a significant number of people who contract Lyme either are misdiagnosed during the early stages, or fail to seek medical attention, leading to a chronic form of the disease that requires long-term antibiotic treatment. But in guidelines first published in 2006, the powerful Infectious Disease Society of America maintains there is no scientific evidence to support this theory, and that long-term antibiotic use is dangerous.

In a review prompted by an antitrust challenge by Connecticut Attorney General Richard Blumenthal, a special review panel for the IDSA recently upheld the '06 guidelines. (Blumenthal had questioned the impartiality of the guidelines' authors, suggesting they had undisclosed conflicts of interest.) Although the guidelines are technically not mandatory, many insurance companies use them to deny coverage for chronic Lyme treatment, creating a discouraging situation for patients.

"I don't understand why some doctors want to ignore that this is happening," Wilde said. "It's frustrating that they've turned a blind eye to it, or scarier, that they're saying it's something else."

The medical establishment says it's simply a matter of science.

"They are chronically ill, a little desperate and they are searching for answers," said Dr. Paul Mead, an epidemiologist for the Centers for Disease Control and Prevention. "We can all understand that. The question is: Is the treatment they are getting beneficial?"

Doctors who treat chronic Lyme, dubbed "Lyme-literate" physicians, are few and far between. Plahn travels to Fond du Lac, Wis., for treatment from Dr. Steven Meress of the Fox Valley Wellness Center. After about six months under Meress' care, Plahn has noticed significant improvement. His pain has subsided, his brain is not as foggy, and he has regained some energy. He feels like he is on the right track.

"With chronic Lyme, people think they are going crazy," Plahn said. "You think, 'I'm in excruciating pain, but could it be all in my head?' Could it be psychosomatic? I was open to exploring that. But whatever I have is very real. It came on abruptly and it was not leaving."

Meress, an internist whose practice combines traditional and integrated approaches, sees Lyme patients from 18 states and four countries.

"My patients on average have seen seven physicians over the course of 20 months before coming to me," he said. "They are sick and they are frustrated. Lyme disease has become a political battlefield, and the patients have been put in the middle of this. It's doctor vs. doctor, insurance company vs. insurance company. People have spent $15,000, $30,000 out of pocket to fight this disease. They've lost jobs, spouses, houses. Sometimes it's better to have cancer -- at least the treatment is paid for."

Why are long-term antibiotics necessary? According to the chronic Lyme camp, because the organism that causes Lyme disease is a complicated one that can hide inside human cells, and often is accompanied by co-infections. "This disease is not easy to treat," Meress said.

The chronic Lyme controversy has resulted in investigations of some Lyme-literate physicians by state medical boards. It also has spawned legislative bills in several states aimed at protecting doctors who prescribe long-term antibiotics to treat chronic Lyme.

"It's interesting that it's OK to give [the antibiotic] Doxycycline for five years for acne, but the IDSA suggests only 14 days for Lyme disease," Meress said. "Acne doesn't kill people. Lyme does."
'The great masquerader'

The chronic Lyme camp believes there is no reliable diagnostic test for Lyme, resulting in many false negative results. And Lyme symptoms can mimic those of many other diseases, including Parkinson's, fibromyalgia, multiple sclerosis, Alzheimer's and ALS. The chronic camp calls Lyme "the great masquerader."

Take the case of a Colorado doctor named David Martz. He was diagnosed with ALS, or Lou Gehrig's disease, in 2003 and given two years to live. Although he had initially tested negative for Lyme, he pursued treatment by a Lyme-literate doctor -- and the treatment reversed his symptoms and saved his life.

Some researchers believe patients diagnosed with rheumatologic and neurologic conditions, as well as multi-system illnesses, should be evaluated for chronic Lyme.

A 2009 documentary, "Under Our Skin," shed light on chronic Lyme while taking aim at the IDSA and the medical establishment. But the CDC, which links to the IDSA guidelines on its Web site (cdc.gov), stresses that sound scientific principles form the basis of the guidelines.

"Misdiagnosis is not in the patients' best interest," Mead said. "Yes, we don't know everything. And the patients feel abandoned and frustrated by all of us. ... Is it a persistent infection or post-infection complication? It's been studied several times and all available evidence indicates it's not a persistent infection. But because there was still concern that [patients] might benefit from longer-term antibiotics, several well-defined studies were conducted, and all showed there was no benefit."

From 1992 to 2006, the number of reported Lyme disease cases in the United States more than doubled, from 9,908 to 19,931. In 2008, there were 28,921 confirmed cases -- 108 of them in Illinois. It's commonly believed that the disease frequently goes unreported.

Plahn, an urbanite whose idea of camping is going to the Four Seasons, has no idea where he might have been bitten. But disease-carrying ticks are everywhere, Meress said, including in our backyards and on our pets. Plahn never noticed a telltale Lyme bull's-eye rash on his body, but that's not uncommon, Meress said, noting that fewer than 50 percent of infected people recall a rash.

Plahn learned from Meress that he had been infected for at least 18 months -- and possibly much longer -- before experiencing the symptoms that led him to seek help.

"It was in my bones, my lymph system, everywhere," Plahn said.

He believes that stress -- he was starting a new company, and Wilde was pregnant with the couple's son Oliver, who was born in September -- must have triggered his symptoms because "that's the only thing that makes sense."

There are still so many unanswered questions. For Plahn and Wilde, of course. And for the medical community as well. But like many others suffering from the illness, Plahn and Wilde are confident they've made the right treatment choice.

"At the end of the day we're just happy to have found something to help him feel better," Wilde said.