(July 15, 2010)  One of every four reported cases of Lyme disease in the United States occurs in New York State, and the East End of Long Island is one of the most intense areas of Lyme infestation in the world. Many people who live here have been exposed to Lyme disease, and many may still be sick from it. There’s even a chance that you could be carrying Lyme disease and not know it.

Lyme disease is controversial, and Lyme patients have been caught in the middle. Ten years ago, academics in the university hospitals were pitted against the front-line doctors in the community about the nature of Lyme and how to treat it, but that may be changing.

New research about the biology of the bacterium that causes Lyme, Borrelia burdorferi, has called conventional wisdom into question. Ten years ago, academics believed that any symptoms a patient had after initial treatment for Lyme had to be due to something else. Now we’re not so sure. We don’t have all the answers yet, but the questions are compelling.

A couple of well-known antibiotics are supposed to completely kill off Lyme in animals and in humans. But new research has shown that a full course of powerful antibiotics in Lyme-infected mice did not completely kill off the bugs. Enough live Borrelia burdorferi was extracted from the antibiotic-treated animals to newly infect other, normal animals. That’s not supposed to be possible.

So the Lyme bacteria are somehow able to evade the antibiotics and remain alive in the tissues. We don’t know yet if this happens in people — it appears that it does, but it’s certainly not supposed to happen in animals. The findings were published in The Journal of Infectious Diseases in May 2007 by Heta Yrjanainen and colleagues. Similar findings were published by Stephen Barthold in Antimicrobial Agents and Chemotherapy in August 2007.

I had a conversation with Dr. Brian Fallon, the director of the Lyme and Tick-Borne Disease Research Center at Columbia University Medical Center, last week. Dr. Fallon is on the cutting edge of what we know about Lyme disease.

    “The two-camp battle of the 1990s created an unfortunate tension within the medical community, and a lack of interest in pursuing questions about Lyme in academic medicine,” said Dr. Fallon. “And it created tremendous difficulty for patients who are just trying to get help and get over their symptoms. They don’t care so much what the cause is; they just want to go on with their lives and stop being sick.”

    There have been some important scientific advances in the last five years. These two papers now show that Borrelia burdorferi can persist despite antibiotic treatment and apparent initial eradication. Additionally, some patients with chronic, persistent symptoms after initial treatment for Lyme appear to benefit from a repeated course of antibiotics, according to Dr. Fallon.

    This may involve the placement of a semi-permanent, peripherally inserted central catheter into an upper-arm vein for daily IV antibiotics. The catheter has to be managed carefully and has its risks. It can develop a worrisome clot or infection. Though most people do well with a peripherally inserted line for a month or two, it is not a treatment to be undertaken lightly.

    Getting an initial Lyme diagnosis can also be tough for many patients. Amy Tan, the novelist, began experiencing hallucinations early in 2001. It took her almost two years of fatigue, a stiff neck, headaches, memory lapses, and a string of doctors, some actively hostile to the possibility, before she was correctly diagnosed with Lyme disease. This is not an unusual story.

    Some doctors think there is a lot of Lyme hysteria here on the East End. There may be some truth to that. It’s a challenging and scary medical problem. I personally treat many Lyme patients or people we think have Lyme for neurological symptoms and pain. I can tell you that it’s not easy or clear-cut.

    A person’s emotional state and their multiple physical symptoms are huge issues in this patient population. One can never be entirely certain as to the origin of certain symptoms. Ideological rigidity and neglect of conventional psychiatric and neurological diagnoses do not make for good patient outcomes.

    Still, I’ve seen lots of hard-working, levelheaded people, Bonackers, who have responded well to a strong follow-up course of antibiotics or a semi-permanent catheter. These folks are not flighty or neurotic. It’s not all in their heads.

    Some patients have the misguided notion that the only way they can feel better is to fight the illness with as many antibiotics as possible. Lyme disease causes neurologic dysfunction, so therapies may need to include treatments for neurological, pain, and emotional issues as well. We have some brand-new therapies besides the antibiotics that seem to be helping a lot.

    Lyme may turn out to be a lot more like another spirochete bacterial illness — syphilis — than we could have imagined. Both can have a long latency period before symptoms appear, both can start out with a rash, both apparently can hide in the tissues, both involve multi-system disease, both cause neurologic and psychiatric problems, and both can mimic other diseases.

    There are some docs out there treating Lyme who are pretty far out — even for me, a university medical professor for many years and fully trained quack. The bottom line is, if you’ve been exposed to Lyme disease, you’ve got to get the antibiotics quickly — full stop. Yes, there are other things that can help, like acupuncture and supplements, but you need to try to eradicate the bug.

    “Doctors are still in somewhat of a quandary, because we don’t have a test to tell if someone has an active infection or not,” Dr. Fallon told me. “So we’re left with clinical judgment. That’s useful, but it’s not completely adequate. We don’t know who will benefit from additional antibiotics and who will not.”

    For more information, go to the Columbia University Web site at columbia-lyme.org, and look under the Research/Education tab. For more general information on Lyme disease, please see my June 4, 2009, column at easthamptonstar.com.

    More needs to be done to control the spread of Lyme disease. Ticks are increasing in our area, but New York State is working with limited resources to fight the spread of Lyme ticks.

    Learn how to protect yourself from the ticks. If a deer tick has been on your skin for more than 24 hours, consider treatment and don’t wait for a rash. Despite the frustratingly unanswered questions we have at this time, you can get help for Lyme.

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    Questions can be directed to Dr. James Dillard at jdillard@ehstar.com.