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
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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.
» Click to enlarge image
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.

Yet another familiar story

Hi everyone,

Thought you would enjoy this article from the Wichita Eagle.

Be well,

Richard




Posted on Mon, May. 10, 2010
Symptoms make Lyme disease difficult to diagnose
BY HURST LAVIANA
The Wichita Eagle

Bob Reichenberger was perfectly healthy last June when he drove to a pasture near Andale to adjust the sights on two rifles. "I'm an athlete," he said. "I work out. I eat good food. I don't drink. I don't smoke. I've never had any health problems."

Reichenberger didn't worry about the two ticks that bit him that day.

"I felt one crawl up my neck," he said. "I pinched it in half and threw it out the window. Later that night I pulled one off my head."

Reichenberger, a detective on the Wichita Police Department's gang investigations unit, said he was used to chasing down 20-year-old gang members. But over the next several months, he was debilitated by one of the tick bites.

He spent a week at Wesley Medical Center, missed two months of work, began experiencing paralysis and watched his weight drop from 175 to 140 pounds — all without knowing the cause of his mysterious and painful illness.

In December, when he finally was diagnosed with Lyme disease, he began what has been a long and slow recovery from an illness that's not often discussed in Kansas.

"It's a physically and emotionally devastating disease," he said.

Prime time for Lyme

Reichenberger said he was happy to share his story during what has been designated as national Lyme Disease Awareness Month.

As warm weather brings people outdoors, health officials say, May is a good time to learn about tick-borne diseases and how to take precautions to protect pets and yourself from them.

Janice McCoy, health protection coordinator for the Sedgwick County Health Department, said April through September are the prime months for tick-borne disease in Kansas.

She said there were 18 suspected cases of Lyme disease reported last year in Sedgwick County, and four suspected cases of Rocky Mountain Spotted Fever, which also is spread by infected ticks.

"If not treated by antibiotics, they can cause long-term problems," she said.

The bite of a Lyme-infected tick often leaves a distinctive bull's-eye rash that can grow to 12 inches in diameter.

"That is generally the first sign of infection," McCoy said.

For the 20 to 30 percent of Lyme patients who don't get the rash, she said, diagnosing the disease can be tricky.

From three to 30 days after the bite of an infected tick, she said, a victim begins to exhibit symptoms that mimic many other diseases — fatigue, chills, fever and muscle pains.

"The best thing you can do if you think you have been bit by a tick and have the symptoms, is to see a physician,'' she said.

Kansas state epidemiologist Charlie Hunt said there were 16 confirmed cases of Lyme disease statewide in 2008, the last year for which figures are available. Cases are confirmed after two lab tests come back positive.

Three of the confirmed 2008 cases were in Sedgwick County, while four each were reported in Reno and Johnson counties.

"It's been a reportable disease here for many years," Hunt said. "The organism has been identified in Kansas. It's just not as thick as it is in the northeast.

"We know physicians are looking for it."

Difficult diagnosis

Reichenberger said neither he nor his doctor suspected Lyme disease when he first started experiencing symptoms — muscle spasms and pain in his feet and lower calves — about a month after the tick bite. If he developed the bull's-eye rash, he said, it was probably under his hair and he didn't notice it.

Over the next several weeks, Reichenberger said, the pain spread steadily throughout his body. Eventually, he said, he felt like knives were stuck between the vertebrae of his spine. He said he felt excruciating pain in every muscle in his body.

He was unable to sleep, he said, and prescribed pain medications offered no relief.

In November, after nearly collapsing at work, he was admitted to Wesley. While in the hospital, he said, doctors took blood tests and did an MRI of his brain.

"I had all kinds of doctors looking at me," Reichenberger said. "They just couldn't quite figure out what the problem was."

One doctor suggested that he might have post-traumatic stress syndrome after working 17 years as a police officer. Another diagnosed him with fibromyalgia.

"One of them thought I had Lou Gehrig's disease," Reichenberger said. "Others just flat out said, 'We can't find anything physically wrong with you. You need to see a psychiatrist.' "

After Reichenberger returned home, he and his wife began researching his symptoms, and they began to suspect Lyme disease. But initial tests to determine whether he had the disease were negative, he said.

In December, as he began to fear his disease would prove fatal, he made an appointment with a Missouri doctor who specializes in Lyme disease.

"He immediately diagnosed me as having all indications of Lyme disease," Reichenberger said.

He said tests performed at a California lab were positive for the disease. He said the pain continued during his first month of treatment, but that by February he began to show signs of improvement.

"I still have a few glitches here and there," he said. "But I'm strong again, and I'm pain free.

"I feel like I came back from dead."

Reichenberger said those seeking more information about Lyme disease can visit www.lymenet.org or www.turnthecorner.org.
Reach Hurst Laviana at 316-268-6499 or hlaviana@wichitaeagle.com.

© 2010 Wichita Eagle and wire service sources. All Rights Reserved. http://www.kansas.com

Read more: http://www.kansas.com/2010/05/10/v-print/1306879/symptoms-make-lyme-disease-difficult.html#ixzz0nhGpaLHK

ISDA has again showed extreme ignorance!

Hello friends,

I have to again report that the ISDA leadership has shown extreme ignorance in regard to the long term treatment of Lyme patients with antibiotics. I reference to you the Under Our Skin Blog at http://underourskin.com/blog/?p=738 concerning this matter. Jordan Smith, the park ranger featured in the film has written the ISDA a letter announcing his displeasure with the stance taken by this group again. This group continues to prove it is biased against current testimonies of Lyme patients. I have copied the text of Jordan's letter for you to read below:


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To the Infectious Diseases Society of America:

Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you’ve done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.

By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.

Your ineffectiveness and the extent of your compromise with the insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life’s work is an unchecked epidemic.

—Jordan Fisher Smith, recovered victim of tick-borne disease

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Join Jordan and write your letter to the ISDA

Be well,

Richard