LymeNet Newsletter Volume 1 Issue 21

Volume: 1
Issue: 21
Date: 09-Sep-93

Table of Contents:

ANNOUNCEMENT: NJ LD Coalition Trenton Rally BOSTON GLOBE: Lyme Disease Victim [Evan White] Asks Panel for Help NEW YORK TIMES: Lyme Disease: Does It Really Linger?

Newsletter:

***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 21 - 9/09/93

I. Introduction II. Announcements III. News from the Wires IV. Jargon Index V. How to Subscribe, Contribute and Get Back Issues

I. ***** INTRODUCTION *****

This issue of the newsletter contains two long news stories and an important announcement. The first news story recounts the events at the Senate hearing on LD last month. The second story brings to light the controversy on persistent infection.

The announcement focuses on the insurance bill in the New Jersey Assembly.

-Marc.

II. ***** ANNOUNCEMENTS *****

FROM: The Lyme Disease Coalition of New Jersey SUBJECT: Trenton Rally

The NJ Lyme Committee, a group that has formed to support Lyme patients, announces that is holding a rally at the State House in Trenton, 10:30 am, Thursday, September 23.

The purpose of the rally is to focus attention on S-1297/A-2553, the bills which require insurance companies to pay for physician-recommended treatment of Lyme disease. Currently, many companies are cutting off payment for Lyme treatment.

Although the Senate has passed its version of the bill, S-1297, the Assembly Insurance Committee has not even released the Assembly's companion bill, A-2553. Therefore, it cannot be considered for an Assembly vote. Both the Senate and Assembly must pass a bill for it to be sent to the governor to be signed into law.

It is imperative that we force the assembly to recognize the plight of Lyme victims who not only have to battle the disease, but also must fight to get appropriate treatment and adequate treatment compensation.

Since insurance companies expend large sums of money lobbying against bills perceived to be detrimental to their profit margins, Lyme victims must provide sheer numbers to lobby for passage of A-2553.

The Lyme Disease Coalition of New Jersey and VOICE, Victims of Insurance Company Exploitation, support this rally.

Questions? Call: Gretchen Selbert (609) 751-1355 Pat Smith (908) 938-4834 Sallie Timpone (201) 288-5249

III. ***** NEWS FROM THE WIRES ******

HEADLINE: Lyme disease victim asks panel for help SOURCE: The Boston Globe DATE: August 6, 1993, Friday, City Edition SECTION: NATIONAL/FOREIGN; Pg. 14 BYLINE: By Joel P. Engardio, Contributing Reporter

A frail, 14-year-old boy whose body has been ravaged by Lyme Disease held a Senate panel in sympathetic awe yesterday as he pleaded for help in finding a cure.

Sen. Edward M. Kennedy, the committee chairman, and many others in the hearing room appeared moved by Evan White of New York, who Kennedy described as a "brave, young man."

White, weighing only 80 pounds and bound to a wheelchair, usually does not have the strength to speak, and communicates to his mother with barely audible words and hand gestures.

But when his mother, Ruchana White, offered to translate for her son, he tried to push her away to speak on his own. He managed to whisper into the microphone. His mother repeated his words.

"We can't think. We can't sleep. We need you," he said of victims of the disease. We need everybody to work together to tell everybody how we feel."

Kennedy removed his glasses, wiped his eye, and after a pause, leaned forward and spoke to the young witness.

"Of all the testimony today, those few words of yours will be the most powerful," Kennedy said with a slight quaver in his voice. "You said it right. I think the best way we can thank you is to make sure we do something about it like you asked us."

Kennedy's Labor and Human Resources Committee was looking at the relatively new and mysterious disease caused by bites from tiny deer ticks. First discovered in Connecticut in 1976, Lyme Disease is highly concentrated in the Northeast, although cases have been reported in 44 states. One of the "hot spots" of the disease is Nantucket.

According to the Centers for Disease Control in Atlanta, more than 9,600 Lyme Disease cases were reported last year compared to about 500 in 1982. The disease starts with flu-like symptoms and, if untreated, can progress to conditions that affect the heart, nervous system and joints. Often, a slowly expanding red rash will appear signaling a possible tick bite.

Some controversy has emerged over the treatment and diagnosis of Lyme Disease, generating a few heated exchanges at the hearing. Many of the victims complained they had trouble discovering the source of their strange illness, and many doctors had dismissed their complaints as psychological while they continued to suffer.

But Dr. Allen Steere, a professor at New England Medical Center in Boston, told the panel Lyme Disease has become a "catch-all" diagnosis for difficult to treat conditions. The chronic Lyme Disease many victims claim to have is rare, Steere said, and the disease can be successfully treated early with 30 days of oral medication.

"Confusing Lyme Disease with other illnesses runs the risk of taking Lyme Disease research efforts down the wrong track and wasting scarce resources," Steere said.

Shouts of "He's wrong, he's wrong!" came from the audience in protest to Steere's words. Many wore green ribbons on their chest to symbolize solidarity in fighting the disease.

"If the doctor really looked around and saw all the children like Evan, he would know they are chronically and critically ill," Mrs. White said. "He cannot minimalize it because the people are here to testify it is happening and it is everywhere."

Steere said he did not mean to say people like Evan do not have a problem, but that Lyme Disease misdiagnosis is common. He said in 17 years of Lyme Disease research he has not seen a case like Evan's.

When Sen. Howard M. Metzenbaum, an Ohio Democrat, pointed out that Steere's testimony contradicted what others had been saying, the crowd erupted in cheers.

"This testimony has been a clarion call. We ought to get off our butts and do something about this," Metzenbaum told the audience, many of whom had the disease or know someone who does. "We just owe it to you to try to find an answer."

*****=*****

HEADLINE: Lyme Disease: Does It Really Linger? SOURCE: The New York Times DATE: August 24, 1993, Tuesday, Late Edition - Final SECTION: Section C; Page 1; Column 1; Science Desk BYLINE: By ELISABETH ROSENTHAL

FROM her bed at Northern Westchester Hospital Center, Vicki Logan begs to differ with academic scientists who claim that there is no such thing as chronic Lyme infection and that Lyme is cured with at most four weeks of antibiotics.

Since 1987, Ms. Logan has battled headaches, fevers, fatigue, progressive paralysis, seizures, periods of dementia and memory loss so severe that she remembers only the previous three weeks out of the last year. For much of her illness doctors told her she could not possibly have Lyme disease and prescribed no antibiotics.

Two years ago Dr. Kenneth Liegner, a Westchester internist, decided to buck conventional wisdom and try giving her prolonged courses of antibiotics that could kill the Lyme spirochete: She improved somewhat during each course of the drugs, and relapsed when they were stopped. Dr. Liegner became convinced that Ms. Logan had chronic active Lyme infection that could be controlled but not cured through daily drug treatment.

Others, including consultants at the Mayo Clinic, disputed the diagnosis, saying that after months of antibiotics, Ms. Logan -- if she ever had Lyme -- had certainly been cured. But recently, Dr. Liegner was vindicated: scientists at the Centers for Disease Control and Prevention in Atlanta found the Lyme spirochete, Borrelia burgdorferi, swimming in a sample of Ms. Logan's spinal fluid.

"My life prior to the last three weeks is a blank," Ms. Logan said in a halting voice. "I've lost everything and I'll be going to a nursing home when I get out of the hospital. If you think you have Lyme disease, you have to pursue the diagnosis."

A handful of cases like Ms. Logan's are challenging conventional assumptions about Lyme disease and igniting a fiery debate about the usual course of this increasingly common infection: Are disastrous experiences with Lyme like hers the rare exception or the rule?

Most people who are treated shortly after a tick bite tend to recover uneventfully, but a small number go on to develop chronic symptoms which they attribute to Lyme infection despite extensive antibiotic treatment. These patients, who sometimes receive months of home intravenous treatments and experience serious disability, account for the lion's share of the health care dollars spent on the illness. They fill the growing number of Lyme support groups.

And yet doctors are unsure which, if any, of them actually has active Lyme. Many of the country's leading Lyme experts believe that the number is microscopic. "I think persistent infection occurs but it is very, very rare," said Dr. John J. Halperin, professor of neurology at North Shore University Hospital on Long Island. "There are a lot of people being labeled chronic Lyme with very little evidence of it. They don't have Lyme and so they won't respond to a zillion months of antibiotics." Some of the patients' complaints -- generally fatigue, joint aches and cognitive problems -- may be due to permanent tissue damage from Lyme sustained before antibiotic treatment, Dr. Halperin said, or to some poorly defined immune reaction set off by prior infection. He and many other doctors say they believe that the majority never had Lyme at all.

On the other side are Dr. Liegner and other doctors who say their practices are filled with Lyme patients who do not get better. They say academic experts are so blinded by what they "know" that they cannot see the evidence piling up in front of their eyes.

"I think that Lyme is an incurable disease in many patients -- there's no question in my mind about that -- and I think that's being suppressed and denied," Dr. Liegner said. "Cases like Vicki Logan's are not exceptions; they reveal the problems with our current paradigm."

The resolution of this scientific question has tremendous implications for patients and has spilled over into economics and politics as well.

Although some doctors prescribe long-term, high-dose intravenous antibiotics, most do not. And many insurers refuse to pay for these long courses, which cost over $100,000 annually, citing scientists who do not believe that extended therapy is necessary. Politicians at both the state and Federal levels, including the Labor and Human Resources Committee, are holding hearings in part to address patients' complaints that the practice is unfair.

"I think the jury is still out on what chronic Lyme disease is and is not and that has resulted in quite a controversy," said Dr. David Dennis, head of the Lyme disease effort at the C.D.C.

Carl Brenner, a marine geologist who has been unable to work for two years due to the neurologic effects of Lyme, said: "A lot of people aren't getting better. I'm not sure if that's because of persistent infection or not -- I happen to think it often is -- but I think it's disingenuous for experts to say, you're done, you're cured. Sure, the evidence for persistent infection is anecdotal, but if 100 people tell you that your fly is open, you look down." New Diagnostic Tests

The debate will probably eventually be resolved by a number of exquisitely sensitive new tests currently under development to detect the normally hard-to-find spirochete by recognizing its DNA or the proteins on its surface. In studies these probes have discerned traces of the organism in some people who have suffered chronic symptoms but who were told they did not have Lyme or that they had been successfully treated.

While patients' groups are quick to use such results as evidence that chronic Lyme might well be common, the doctors who developed them are a good deal more cautious. They say that the new tests, which are still experimental, are in some cases prone to contamination and in any case may be detecting the remnants of organisms that have already been killed by therapy.

"Clearly this is a research tool which still has to be validated," said Dr. Patricia Coyle, a neurologist at that State University of New York at Stony Brook who has developed a test that detects one of the Lyme organism's proteins. "But we think we are legitimately finding the spirochete in some cases, and we do clearly find it in some patients who say they are having persistent problems. And I do think that means they have viable organisms."

Doctors have long described a subset of Lyme patients whose symptoms are only partly resolved with treatment and another group of patients who seem to get better when on antibiotics but relapse after the medicine is stopped. In a study by Dr. Robert Steere, director of rheumatology and immunology at Tufts-New England Medical Center in Boston, one-third of patients complained of symptoms after treatment.

Scientists have been unsure what to make of these complaints. Dr. Steere, who identified Lyme disease 15 years ago, does not believe they result from longstanding or relapsing infections. But some prominent researchers have come to believe that at least a few patients with lingering symptoms indeed still harbor the bacterium.

"The issue of post-infectious syndrome is very difficult and I suspect it is a mixed bag," said Dr. Coyle. "Some are due to an immune or inflammatory reactions. But I do think that some are due to persistent infection. I certainly think that relapsing Lyme can happen." Clues to Prolonged Infection

The Lyme organism is extremely difficult to culture, particularly when the disease is advanced, so doctors are left relying on indirect and imperfect tests to determine if a patient with continuing symptoms is infected. The current Lyme test detects the patient's immune response to the parasite and is prone to false readings. In most cases it is impossible to say with certainty that a patient harbors the bacterium. Even among patients whom all doctors would agree have Lyme infection of the central nervous system -- who have a known tick bite, a typical Lyme rash and test positive on all current tests -- only 10 percent have spinal fluid samples in which scientists can find the germ.

"In most infectious diseases, you don't diagnose until you identify the organism -- which is the sine qua non -- anything else is inferior," said Dr. Mark Klempner, a Lyme expert at Tufts-New England Medical Center. "But in many cases of Lyme we're stuck. We can't find the bacterium. Until we have a better diagnostic test that actually finds or measures multiplying bacterium, we're going to have problems knowing which if any of these patients have an ongoing infection and who might benefit from treatment."

Labs working on the new DNA and antigen tests to detect the parasite itself have been deluged with fluid samples from patients with late-stage symptoms but no clear lab results. In some of these cases the tests have come up positive.

Scientists are just beginning to understand how, despite treatment, either lingering immune reactions or prolonged infection might occur. Dr. David Nelson and his colleagues at the University of Rhode Island have recently reported that the Lyme spirochete contains a certain type of protein, called HSP60, that is so structurally similar to a protein in human cells that some patients' immune systems can not readily distinguish between the two. When the immune system attempts to identify and destroy the Lyme spirochete, it inadvertently destroys human tissue as well.

Scientists suspect that genetic factors that govern the immune response may explain why some patients with Lyme recover uneventfully without treatment, and others are disabled for life despite antibiotics.

Researchers have come to believe that chronic Lyme may be difficult to detect and treat because it is caused by a very few free floating organisms that are confined to the joint spaces and central nervous system -- sites that many antibiotics do not reach. Recent work in Dr. Klemper's lab has shown that the spirochete may well spend at least part of its life cycle inside cells, where they are similarly protected. Concerns About Profiteering

Unfortunately, scientific advances have not clarified whether the small number of well-documented cases of chronic Lyme represent anomalies or the tip of a huge iceberg.

Dr. Dennis said: "Is there evidence of persisting infection despite antibiotics? Yes, there are a few case reports. But when you look into it, some didn't have adequate treatment, and there are things about some of these people that make you think they don't have a normal host immune reaction. And like anything in medicine, there are a few outliers."

But Carol Stolow, who runs the Lyme Disease Network of New Jersey, says her hotline is "ringing off the hook" with calls from desperate people with chronic Lyme who are battling insurers and having trouble finding doctors who will prescribe antibiotics. "Until you completely understand this spirochete, don't tell me you know it can be cured in four weeks," said Mrs. Stolow, who has three children who have been treated for chronic Lyme.

There are similarly loud disagreements about how often people who test negative on the standard Lyme antibody tests can nonetheless have Lyme disease. It was because Ms. Logan initially tested negative on this test that she went untreated for years. The newer lab methods have proved that this is possible, but no one is sure how common it is.

Dr. Halperin, whose own lab has uncovered a few such cases using a genetic technique, takes issue with the spin that Lyme activists put on his results. "We all feel that this is very rare, but getting the statistic is like trying to estimate the number of angels on the head of the pin," he said.

He and others worry that while a few people may have chronic Lyme disease, thousands more are being treated for the condition with high -- sometimes dangerously high -- doses of antibiotics.

"I'm concerned that there are people who are marketing very long courses of antibiotics to treat Lyme without a good prospective study, and I am very concerned about profiteering," said Dr. Klempner.

Hoffmann-Roche Inc., the maker of ceftriaxone, an intravenous drug marketed as Rocephin that is commonly used to treat advanced Lyme, has underwritten teaching videos about Lyme disease featuring doctors who believe in extended treatment. Many of the patient support groups and "grass roots" information networks rely on these companies to underwrite their phones, their faxes, their 800 numbers. On the other hand, some of the doctors who advocate only limited treatment have become paid consultants to insurers.

With the diagnosis of late Lyme generally uncertain, authorities caution that doctors must be rigorous in attempting to prove their case. Dr. Liegner sends specimens to labs all over the country in an effort to properly diagnose his patients. But Dr. Coyle laments that many patients referred to her carrying the diagnosis of chronic Lyme of the central nervous system have had inadequate testing, lacking even spinal taps. She said: "This is a terrible area and people are being treated with prolonged courses of antibiotics without any attempt to find out what's going on."

IV. ***** JARGON INDEX *****

Bb - Borrelia burgdorferi - The scientific name for the LD bacterium. CDC - Centers for Disease Control - Federal agency in charge of tracking diseases and programs to prevent them. CNS - Central Nervous System. ELISA - Enzyme-linked Immunosorbent Assays - Common antibody test EM - Erythema Migrans - The name of the "bull's eye" rash that appears in ~60% of the patients early in the infection. IFA - Indirect Fluorescent Antibody - Common antibody test. LD - Common abbreviation for Lyme Disease. NIH - National Institutes of Health - Federal agency that conducts medical research and issues grants to research interests. PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence of the microbe in question. Currently being tested for use in detecting LD, TB, and AIDS. Spirochete - The LD bacterium. It's given this name due to it's spiral shape. Western Blot - A more precise antibody test.

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