Some NH doctors dispute CDC approach

THE UNION LEADER - New Hampshire
Thirty years after a mysterious illness began showing up around Lyme, Conn., there is ongoing debate among physicians about how to properly diagnose and treat what is now known as Lyme disease.

Doctors agree that most cases of the tick-borne illness can be treated with antibiotics if discovered early enough, before the bacteria that cause it spread throughout the body. But some patients go on to develop debilitating symptoms, even after antibiotic treatment, and medical experts disagree about why that is.

Dr. Jose Montero, New Hampshire's state epidemiologist, said it's not clear what causes chronic symptoms - including fatigue, muscle and joint pain, and cognitive impairment - in some patients: "If it is an ongoing infection, if it's an immune, long-term reaction, or if it's not related to Lyme disease and there is something else that we are missing - all of these things are real possibilities."

Montero said the state health department refers callers who ask about Lyme disease to scientific sources of information, such as the Centers for Disease Control Web site - and tries to steer them away from others.

"I usually tell the patient not to 'Google' Lyme disease, because they are going to get to several different places - and I understand most of those Web sites are well intended - but they are not that accurate, and they put in people's minds several more fears than what they need to have," Montero said.

CDC's open question

So what does the CDC think is going on with these chronic patients?

Paul Mead, a medical epidemiologist with the CDC, said it's "still a little bit of an open question."

But he said, "I think in general the studies seem to suggest that for a sizable proportion of the people who have these chronic symptoms following Lyme disease, who have been treated, that it is not the result of persistent infection with the organism, but some other reaction of the body to having been previously infected."

"And part of the rationale for that is that it's not clear if you give them longer courses of therapy they necessarily benefit."

"Can I say chronic infection never, ever occurs? No, of course I can't, and that's where one has to not be dogmatic about these things," Mead said.

What if some Lyme isn't really Lyme?

Long-term concerns

The CDC's Web site warns against long-term treatment for these patients: "Longer courses of antibiotic treatment have not been shown to be beneficial and have been linked to serious complications, including death."

But some physicians who treat New Hampshire Lyme patients say the CDC's guidelines for testing and treatment of the disease are far too narrow, and result in unnecessary suffering.

Dr. Rex Carr, a West Lebanon physician, has treated hundreds of patients over the past several years for what he carefully calls "Lyme disease or a Lyme-like illness."

"All we really know is that we have a group of people who have this set of symptoms, and the majority of people that have this set of symptoms seem to ultimately improve when we give them these antibiotics," he explained. "But we don't really know if what we're treating is 'Lyme, Connecticut' Lyme disease; or a cousin of Lyme disease, another strain; or even a third thing that has nothing to do with Lyme disease."

"But I believe the bottom line is there is no good reliable test, and that's the reason for the controversy," Carr said.

What convinced him

Dr. Don McNeel, a family physician in Portsmouth, said there are currently two standards of care when it comes to Lyme disease. "Because what's happened is traditional...medicine sees Lyme as an acute illness that's treated briefly and the majority of patients go on to do well. I think that's probably true."

But he said, "There's a handful of patients who go on to have a constellation of symptoms that's very vague, that can be explained by a lot of different disease processes, but when you put it all together, it ends up they probably indeed have chronic Lyme."

It was the patients who convinced him, McNeel said. "Two years ago I was in the same camp that most docs are now."

Then he attended a Lyme disease conference, where New Hampshire patients' stories of suffering and misdiagnosis convinced him to look deeper. He currently treats chronic patients with a combination of antibiotic, physical and nutritional therapies.

A specialist in physical medicine and rehabilitation, Carr said he, too, was "clearly a skeptic" at first that Lyme disease was causing the chronic pain and fatigue so many of the patients referred to him were experiencing. "Then I started reading and reading."

And he said, "When the first patients I started to treat (with antibiotics) started to get better and better and better, I said there is something to this." He now believes the majority of patients diagnosed with fibromyalgia, a disorder characterized by aches, muscle pain and stiffness, actually have Lyme disease or a related infection that responds to antibiotics.

The tough cases

Dr. Alex Granok is an infectious disease specialist who practices in Nashua and Manchester. He said what often gets missed in all the debate about Lyme disease is the important message that with early diagnosis and treatment, most patients will recover just fine.

Granok said physicians in his practice tend to see more difficult cases of Lyme disease. "Most of the patients that we see lately have been in the hospital. They have come in with palsies, meningitis, joint symptoms, heart problems."

One of his patients continued to test negative in blood tests, despite clinical symptoms of the disease, including facial palsy on both sides. "That does happen," he said. But after treatment with intravenous antibiotics, that patient has "pretty much recovered."

Today vs. tomorrow

As for patients who continue to have symptoms even after antibiotic therapy, Granok sides with the CDC view. He said physicians who believe there is an ongoing infection are considered outside of mainstream medicine.

"And who knows, 10 years from now, we may find out they're all correct and we have to change our thought process," he said.

Granok said he's up front with his patients about that. "I tell people we think it's probably an immune-mediated problem, but medical science changes . . . Twenty years ago, we didn't think ulcers were caused by bacteria, and someone just got the Nobel Prize for (discovering) that."

But he said, "For now, I would say I don't believe that chronic symptoms past one month of therapy are likely due to active infection, and I would not recommend treatment with antibiotics in those cases."

Others strongly disagree.

Long-term treatment

Dr. Sam Donta is an infectious disease specialist; he retired as a professor of medicine at Boston University two years ago, and is now in private practice in Massachusetts. He estimates he's treated "several hundred" patients from New Hampshire in the nearly 20 years he has been studying and treating Lyme disease.

For his patients who have been ill for more than a couple of years, Donta said, the average course of antibiotics that relieves their symptoms is 18 months. "That's just the way it's worked out. I've learned from listening to patients, and knowing something about infection and something about antibiotics. I think I'm on the right track."

Donta contends those who reject the possibility of chronic infection "are being unintellectual and non-academic."

"You have to allow for the unknown," he said. "To me it's so logical: The very symptoms for which we diagnose a person with Lyme disease, when those symptoms persist, we don't ever further consider it to be Lyme disease?"

And he said the fact that patients eventually do get better with long-term antibiotics is convincing evidence they were still infected.

Call for research

Donta said the CDC was slow to endorse long-term treatment for hepatitis and HIV, now accepted medical practice. And likewise, he believes when it comes to Lyme disease, some medical experts "drew their conclusions early and they're reluctant now to conclude they're wrong."

Medical professionals agree on one thing: More research is needed to solve the mystery of chronic Lyme disease.

"It's up to the scientific community and whoever funds research . . . to clarify what's going on with these people," Montero said.

"I truly believe the suffering is real. It's just that I cannot explain it."