Article By Physician in Training Program
Concord Monitor
Concord NH
September 24, 2006

For many, it's the last refuge
Epping doctor's controversial practice takes a different look at Lyme disease

By MARGOT SANGER-KATZ
Monitor staff

Memory loss, confusion, poor coordination and sore knees. Hand pain, double vision, throat paralysis and falling. Involuntary movement, sensitivity to noise, stomach cramps and intense fatigue. These are the symptoms that Dr. Don McNeel's patients come to his office describing. 

Some have complaints that are mostly arthritic: creaky knees and stiff hands. But most have more complex and troubling maladies. Some are in wheelchairs because of weakness. Others have cognitive problems that make them unable to work or care for their children.

What all of these patients share is a single diagnosis: Lyme disease.  

"The patients are complicated, and their histories are multifaceted, and each treatment has to be tailored to the individual patient," said McNeel, who hung up his shingle in Epping as a Lyme disease specialist in November 2005.  

McNeel believes that the subtle, multifarious nature of chronic Lyme disease demands specialists like him, who are well versed in the illness's tricky progression. But many in the infectious disease community say the reason why McNeel's patients are so varied and difficult to treat is because many don't really have the disease.

Lyme disease experts are divided into roughly two camps, and the sides view each other with disdain. The more conventional, conservative camp, which includes many of the physicians who first discovered and studied the disease in the 1970s, says Lyme is an easily cured bacterial infection that can cause long-term complications in a very small minority of patients. The other, McNeel included, contends the disease is a clever organism that often outlasts conventional treatment and requires vigorous, extended antibiotic therapy to cure chronically afflicted patients.

This battle is fought out less in academic journals and more often before state medical boards, where many Lyme specialists have had their medical licenses threatened, and on newspaper op-ed pages, where advocates offer withering attacks of their opponents' views. Each group says the other's definition of a Lyme diagnosis assumes its own results. The conservative doctors have a narrow definition of the disease, where most infections are easy to treat, the alternative practitioners say, so it's no surprise that they think simple treatment is all that's needed. And the alternative doctors diagnose everyone who walks through their doors, the conventional doctors say, so of course the treatment is complicated.

And then there are the patients, many of whom have been bounced from specialist to specialist because of their crippling symptoms. Often, they've received vague diagnoses - told they might be in the early, hard to detect stages of multiple sclerosis or Alzheimer's disease, that they have chronic fatigue syndrome or fibromyalgia -or told that their affliction is all in their head.

"One person sent me to another to another," said Cheryl Ann Victor, who's been seeing McNeel since February. When she first visited him, she'd experienced memory loss, fatigue, double vision, balance problems, arthritis and had difficulty concentrating. Her symptoms were so intense, she said, she lost her job as a computer programmer. "I went to see a rheumatologist who literally told me, 'You have rheumatoid arthritis, and all your other symptoms are due to your sleep disorder.' And I said, 'I don't have a sleep disorder.' And she said, 'Yes, you do.'"

'I'd be totally disabled'

For Jonathan Golubiewski, his symptoms started with a lingering flu. Every time he'd recover, it would come back. Then he started feeling tired all the time. He went to a sleep specialist, who treated him for sleep apnea, but his fatigue didn't get better. His back started hurting, but an MRI didn't show anything wrong with his spine.

Then his symptoms started getting weirder. He'd have numbness and tingling in his hands, or shooting pains. He'd lose strength in his legs and collapse, once while shopping in a drug store. And his stomach started bothering him. Last winter, he had what he calls his "downward spiral," when he visited the emergency room weekly in intense pain.

"They just kept testing and testing, and they couldn't find anything objective, they said," Golubiewski said.

After visiting the last neurologist, Golubiewski said, the specialist and his primary care doctor agreed that he "should really see a psychologist." That's when he and his wife turned to the internet, found out about Lyme disease, and first visited McNeel.

McNeel diagnosed Golubiewski with Lyme disease and started him on an aggressive course of IV antibiotic therapy. About a year later, Golubiewski still takes about 20 medications a day: two antibiotics to fight the infection, several herbal remedies to offset side effects from the antibiotics, antifungal medications, vitamin B-12 shots for his fatigue, painkillers and anti-inflammatories for his arthritis and sleeping pills to help him sleep through the night.

His mother has moved from New Jersey into his Bradford home to help him and his wife take care of their two kids. He was too exhausted to spend much time with them. And his wife, Carol, was kept busy doing her own work, fighting with the health insurance company and taking care of her ailing husband.

"Each day living with Lyme, it's like you have to decide which things you need to get done," she said.

During a recent visit, Golubiewski came to McNeel's office with Carol, who was a week away from delivering twins. As the couple sat opposite McNeel in his Epping office, Golubiewski reviewed his long list of medications and dosages, which he'd printed carefully on a piece of green paper.

Then McNeel sat back, put his hands on his desk and asked Golubiewski how he was doing. The patient started ticking through his recent symptoms. He still had trouble sleeping at night. He had severe fatigue when he was trying to work. He was extremely sensitive to loud noises and wore earplugs most of the day. He was experiencing regular stomach cramps. He thought he might be scraping his tongue against his teeth during involuntary movements. He sometimes experienced vertigo.

"Probably my major complaint right now would be the pain in my hands and my feet and my knees,"he said. "It's very painful."

But despite all of his continuing difficulties, Golubiewski said he was feeling much better from even his last visit a month earlier. After periods of short-term and long-term disability and a few months working part time and from home, he'd finally gone back to work full time the week before.

McNeel did a thorough physical exam, testing his patient's reflexes, feeling his glands and putting him through some neurological and physical tests. Then they got to talking.

"We don't know, because everyone's different, the long-term effects of having this serious long-term Lyme disease," McNeel said to the Golubiewskis. "It's been almost a year. I see a tremendous improvement, but when we're sitting here talking about symptoms, I feel like -are we getting anywhere?"

For the Golubiewskis, there's no question that the treatment has made a difference. They just wish that more doctors were "Lyme literate" so that Jonathan Golubiewski could have been diagnosed sooner.

"I could be dead," he said. "I'd be totally disabled. I was totally disabled in January."

'They're not crazy'

Dr. Don McNeel came to medicine by way of the clergy. The Epping physician has bachelor's and master's degrees in theology from Bob Jones University in South Carolina and was working as a youth pastor when he realized that he really wanted to be a doctor. He completed his pre-med courses at night and applied to the University of South Carolina School of Medicine as soon as he could.

His background, he said, gives him a particular perspective on the relationship between doctor and patient. He wants his patients to be treated like humans, he feels they need support as much as medicine, and he believes that hope will help them to heal.

That grounding serves him well in his current vocation. His patients are often very sick, very complicated and very discouraged.

Typically, they come to him only after a half-dozen doctors have looked them over and found no cause for their suffering. And they often take many months of treatment before their disease improves.

"Patients need to know that they're not crazy, that their symptoms are real, that their diagnosis is real, and that there is hope," he said.

When McNeel talks to a patient, his manner is calm and confident. He draws clear diagrams that show how antibody tests work and how the spiral shaped Lyme bacteria can hide in body tissues. He listens carefully to their history and answers their questions respectfully. The monthly follow-up appointments he requires of all his patients typically run 45 minutes. The average primary care visit is closer to 15. (Because he doesn't accept health insurance, patients must pay $210 out of pocket for each of these visits.)

He's also upfront about the fact that many doctors won't agree with his diagnosis or his course of treatment. When he sees new patients, he typically slots more than two hours of time in order to take a history, do a detailed exam and talk to the patient about the treatment options and the controversy about Lyme disease.

During a recent visit, he spoke with Roxanne Zaharhuk of Westminster, Mass., whose sister, Becky Tinkham, had brought her in for a consultation. Zaharuk's short term memory had been eroding over the past two years. She'd visited a number of neurologists, including one at Massachusetts General Hospital who'd done a brain scan and determined that Zaharhuk might have early Alzheimer's disease, but that the pattern of atrophy in her brain was not typical for the disease.

"I'm not ready to accept Alzheimer's as the final diagnosis,"Tinkham said. "I just think that if there's a chance she has Lyme and could get better, we should find out."

After McNeel had done his workup, he told the sisters he recommended testing for Lyme and a few blood indicators that might help him make a diagnosis. Then he began his spiel on the "two standards of care" for Lyme disease.

McNeel took out a piece of paper, and he began writing down acronyms: CDC, NIH, IDSA, ILADS. The first three are the federal Centers for Disease Control and Prevention, the National Institutes of Health and the Infectious Diseases Society of America. All three of these groups describe Lyme disease as a simple bacterial infection that can be detected with blood tests and is killed by a two- to four-week course of antibiotics. ILADS is the International Lyme and Associated Diseases Society, a group of doctors who, like McNeel, believe that Lyme disease can be much more difficult to detect and often requires much longer and more aggressive courses of treatment. McNeel, like many ILADS doctors, recommends continuing antibiotic treatment until patients have been symptom-free for four to eight weeks.

"You need to understand with two eyes open going into this that I'm doing something that a lot of doctors aren't going to agree with,"McNeel said. "Let's talk about why its so controversial."

Then he pulled out three consent forms. One was a reprint of a letter from Dr. Gary Wormser, who wrote the treatment guidelines for the disease for the IDSA.

"Too often, patients with mysterious symptoms are misdiagnosed with Lyme disease. Often they are prescribed prolonged antibiotic treatment, an unnecessary and potentially harmful approach," The letter reads.

"Although patients sometimes report feeling better after taking a drug, that does not necessarily prove cause and effect. In one clinical trial of long-term treatment of Lyme disease, almost 40 percent of patients given a placebo felt much better," it continues.

At the bottom of the page is the statement: "I have read this article and understand the controversy, but choose to follow the ILADS guidelines."

Zaharhuk signed the consent forms.

'They haven't proven their case'

McNeel is careful about consent forms, in part because he's learned from the legal battles of other ILADS doctors. Several have had their work challenged by state medical boards and some have had their licenses suspended. Most medical boards consider it to be professional misconduct for a doctor to practice outside of an "accepted standard of care."

In the case of Lyme disease, the IDSA doctors say that their treatment guidelines are the standard. But the ILADS doctors say that there are actually two standards of care - theirs and the treatment recommended by their opponents. Which doctors are chosen to testify before the board can have a big influence on what they decide.

"You do have the infectious disease view, which is that two weeks of antibiotics cures everybody,"said Raphael Stricker, the president of ILADS and a hematologist who sees a lot of Lyme disease patients in his practice. "And the reason for that is they don't treat any of these patients."

Dr. Jonathan Edlow, a Harvard Medical School professor whose book Bull's Eye chronicles the history of Lyme disease, said the case is complicated because the ILADS doctors, whom he calls "alternative,"haven't done enough research to prove their theories right or wrong.

"Part of the difficulty with the alternative camp is that they haven't collected cases and gone about it in a scientific way," he said. "That doesn't mean they aren't right; it just means that they haven't proven their case."

Most infectious disease doctors say the two- to four-week course of antibiotics kills all the bacteria, and that any lingering symptoms won't be helped by further treatment. They warn about the risks associated with long-term antibiotic use, which can include allergic reactions and kidney and liver damage. They also say that overuse could encourage the growth of antibiotic-resistant bacteria.

The groups also differ on how to diagnose the disease. ILADS doctors believe conventional blood tests for the disease often come back negative, even when people are infected. McNeel said he considers Lyme disease to be a "clinical diagnosis," based on both symptoms and blood tests.

But infectious disease experts say blood tests are reliable 95 percent of the time and sometimes even come up positive when the patient isn't sick. A doctor treating a patient with ambiguous symptoms and a negative blood test for chronic Lyme disease may miss the patient's real diagnosis, they say.

"As a former clinician, you want to do what you think helps your patients, but the other side of it is you don't want to be randomly experimenting on your patients, either," said Kevin Griffith, a medical epidemiologist at CDC who researches Lyme disease. "If you're not sure what you're treating, antibiotics are not just benign things you give to people. You have to balance the benefits of what you're doing with the possible risks."

Will believers be vindicated?

When he talks about his work, McNeel doesn't skirt the controversy. He discusses it with every patient he sees. And he's reminded of it every time he interacts with an outside medical organization. Many primary care doctors won't support his treatment of their patients, he said. Most insurance companies won't cover his services. (He bills his patients directly.) Exeter Hospital won't let him admit patients without getting a consultation from an infectious disease specialist, he said. When he was doing family practice, he was able to admit any patient he wanted.

But the debate, while frustrating, hasn't shaken his confidence that he's offering his very sick patients the best treatment available.

"I've been called a quack by several doctors and been labeled as overly aggressive," McNeel said. "And you get to the point where, bottom line is, what can I do to help these patients get better?"

And while he has doubts about how much he's helping individual patients and feels terribly when they're not improving at the pace he'd like, he still believes that the ILADS treatment will be vindicated over time. It will take more research, he said, and more cases to show how the treatment helps the patients. Since he's opened the practice, he's seen patients come to the end of their treatment and go back to their normal lives, he said. And he's heard from his mentors that he'll see that more and more often. Stricker said 70 to 80 percent of his patients recover.

Lyme disease, McNeel said, is like stomach ulcers were 50 years ago. The medical consensus then was that if you were sick, it was because of a poor diet or stress. But it turned out the ulcers were caused by an easily treated bacterial infection. The doctors who discovered the true cause of ulcers got no respect at first, McNeel said. When Barry Marshall first presented his findings to colleagues, McNeel said, "he was laughed out of the meeting."

"Everyone said, 'You're crazy.'And last year, he won the Nobel Prize."

(Margot Sanger-Katz can be reached at 224-5301, ext. 307, or by e- mail at msanger-katz@cmonitor.com.)