Volume: 2 Table of Contents: I. ANN NEUROL: The Polymerase Chain Reaction In The Diagnosis of Lyme Neuroborreliosis II. NEJM: Detection of Borrelia burgdorferi DNA By Polymerase Chain Reaction In Synovial Fluid From Patients With Lyme Arthritis III. SF EXAMINER: Dr. Paul Lavoie, LD Specialist, Dead at Age 60 IV. NY TIMES: (Letter) We Minimize Lyme Disease at Our Peril; Cooperation Needed V. TIMES-PICAYUNE: Officials Won't Aid Inmate Who Needs New Heart VI. Q&A: Roxithromycin and Lyme VII. Q&A: Seronegative Lyme? VIII. Q&A: Lyme Vaccine Testing IX. Q&A: Support Group Listings X. How to Subscribe, Contribute, and Get Back Issues Newsletter: *********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * *********************************************************************** IDX# Volume 2 - Number 02 - 2/15/94 IDX# INDEX IDX# IDX# I. ANN NEUROL: The Polymerase Chain Reaction In The Diagnosis IDX# of Lyme Neuroborreliosis IDX# II. NEJM: Detection of Borrelia burgdorferi DNA By Polymerase IDX# Chain Reaction In Synovial Fluid From Patients With Lyme IDX# Arthritis IDX# III. SF EXAMINER: Dr. Paul Lavoie, LD Specialist, Dead at Age 60 IDX# IV. NY TIMES: (Letter) We Minimize Lyme Disease at Our Peril; IDX# Cooperation Needed IDX# V. TIMES-PICAYUNE: Officials Won't Aid Inmate Who Needs New IDX# Heart IDX# VI. Q&A: Roxithromycin and Lyme IDX# VII. Q&A: Seronegative Lyme? IDX# VIII. Q&A: Lyme Vaccine Testing IDX# IX. Q&A: Support Group Listings IDX# X. How to Subscribe, Contribute, and Get Back Issues IDX# QUOTE OF THE WEEK: "It is ironic that many of those doctors who criticize other members of their profession for allegedly overdiagnosing Lyme disease and mistreating patients are the same doctors whose treatment failures fill the patient ranks of the doctors they criticize." -- BRUCE S. COLEMAN (see section IV) =====*===== I. ANN NEUROL: The Polymerase Chain Reaction In The Diagnosis of Lyme Neuroborreliosis ----------------------------------------------------------- AUTHORS: Pachner AR; Delaney E REFERENCE: Ann Neurol 1993 Oct; 34 (4): 544-50 ABSTRACT: The polymerase chain reaction is sensitive and specific in the detection of defined DNA sequences and holds promise for diagnosing the presence of fastidious microorganisms in human infectious diseases. We developed a methodology for nested polymerase chain reaction and hybridization analysis of the cerebrospinal fluid using primers from a genomic Borrelia burgdorferi sequence and applied it to the cerebrospinal fluid (CSF) of patients suspected of having Lyme neuroborreliosis and other diseases. Polymerase chain reaction and hybridization demonstrated extremely high sensitivity for spirochetal DNA, and was highly specific, with a false-positivity rate of less than 3%. However, the results were negative or indeterminate in 54% of CSF samples from patients with definite or probable disease, indicating an absence, or extremely low level, of spirochetes or spirochetal DNA in a significant percentage of patients with Lyme neuroborreliosis. Polymerase chain reaction and hybridization of the CSF can thus be considered a useful adjunct in diagnosis, but its negativity does not rule out Lyme neuroborreliosis. =====*===== II. NEJM: Detection of Borrelia burgdorferi DNA By Polymerase Chain Reaction In Synovial Fluid From Patients With Lyme Arthritis ------------------------------------------------------------------ AUTHORS: Nocton JJ; Dressler F; Rutledge BJ; Rys PN; Persing DH; Steere AC REFERENCE: N Engl J Med 1994;330:229-34. ABSTRACT: Background: Borrelia Burgdorferi is difficult to detect in synovial fluid, which limits our understanding of the pathogenesis of Lyme arthritis, particularly when arthritis persists despite antibiotic therapy. Methods: Using the polymerase chain reaction (PCR), we attempted to detect B. burgdorferi DNA in joint fluid samples obtained over a 17- year period. The samples were tested in two separate laboratories with four sets of primers and probes, three of which target plasmid DNA that encodes outer-surface protein A (OspA). Results: B. burgdorferi DNA was detected in 75 of the 88 patients with Lyme arthritis (85 percent) and in none of 64 control patients. Each of the three OspA primer-probe sets was sensitive, and the results were moderately concordant in the two laboratories (kappa = 0.54 to 0.73). Of 73 patients with Lyme arthritis that was untreated or treated with only short courses of oral antibiotics, 70 (96 percent) had positive PCR results. In contrast, of 19 patients who received either parenteral antibiotics or long courses of oral antibiotics (>=1 month), only 7 (37 percent) had positive tests (P<0.001). None of these seven patients had received more than two months of oral antibiotic treatment or more than three weeks of intravenous antibiotic treatment. Of 10 patients with chronic arthritis (continuous joint inflammation for one year or more) despite multiple courses of antibiotics, 7 had consistently negative tests in samples obtained three months to two years after treatment. Conclusions: PCR testing can detect B. burgdorferi DNA in synovial fluid. This test may be able to show whether Lyme arthritis that persists after antibiotic treatment is due to persistence of the spirochete. Table 3: Clinical Data and PCR Results in Patients with Lyme Arthritis ====================================================================== [1] Positive Negative PCR Test PCR Test (N = 75) (N = 13) P Value ---------------------------------------------------------------------- Age (yr) 29 (8 - 67) 38 (3 - 62) NS Sex (M/F) 53/22 6/7 NS Months before PCR First symptoms of illness 19 (1.5-76) 38 (2-222) <0.02 Onset of Arthritis 14 (0.25-74) 26 (0.25-153) <0.03 Current episode of arthritis 0.75 (0.03-18) 1 (0.25-35) NS Months after PCR Resolution of current 0.25 (0.03-6) 0.2 (0.03-2.5) NS episode [2] Resolution of last episode[2] 18 (0.1-113) 2 (0.1-58) 0.03 Last follow-up 114 (0-198) 18 (2-179) <0.008 Synovial fluid [3] White-cell count 16.7 (0.05-110) 5.1 (0.44-16.9) <0.003 (x10e-3/mm**3) Protein (g/dl) 5.0 (1.7-9.6) 4.1 (3.3-5.3) NS Antibiotic therapy (no. of patients) None 58 3 ) Short oral courses (<1 mo) 12 0 )-> <0.001 Long oral courses (>=1 mo) 5 10 ) or parenteral -------------------------------- [1] Correlation is with the test results from each patient's initial sample only. Unless otherwise indicated, values are medians, with ranges in parentheses. NS denotes not significant. [2] Four PCR-positive patients and five PCR-negative patients who still had active arthritis at the time of our analysis were excluded. [3] Synovial-fluid data were available for 73 PCR-positive patients and 10 PCR-negative patients. =====*===== III. SF EXAMINER: Dr. Paul Lavoie, LD Specialist, Dead at Age 60 ----------------------------------------------------------------- DATE: January 26, 1994, Wednesday SECTION: NEWS; Pg. A-17 HEADLINE: Dr. Paul Lavoie; Lyme disease specialist Dr. Paul Emile Lavoie, a prominent figure in the research and treatment of Lyme disease, died Sunday of pancreatic cancer in his Mill Valley residence. Dr. Lavoie, 60, was a clinical professor of medicine at UCSF and a founding fellow of the American Rheumatology Association. In 1977, he was credited with diagnosing the first two cases of the tick-transmitted Lyme disease in the Far West. His honors included the Distinguished Physician Award from the Lyme Disease Resource Center and the Lyme Disease Foundation. The latter established an annual award in his name. Dr. Lavoie, a native of Fall River, Mass., earned his bachelor's degree in electrical engineering from the University of Colorado and his medical degree from Hahneman Medical College in Philadelphia in 1969. He completed his postgraduate training in internal medicine and rheumatology at UCSF. An Air Force veteran, Dr. Lavoie was chief of hospital services at Moffitt Field, and in Operation Desert Storm he commanded the non- deployed hospital contingent. He retired as a colonel in the Air National Guard. He leaves his wife of 39 years, Margaret, and three children, Suzanne Lavoie of Oakland, John-Paul Emile Lavoie of San Rafael and Elizabeth Valerie of Los Angeles. [...] =====*===== IV. NY TIMES: (Letter) We Minimize Lyme Disease at Our Peril; Cooperation Needed -------------------------------------------------------------- DATE: January 19, 1994, Wednesday SECTION: Section A; Page 20; Column 5; Editorial Desk To the Editor: Now that the controversy within the medical profession about Lyme disease and the dilemma facing patients concerning its diagnosis and treatment have been aired on your Jan. 4 front page, perhaps something constructive can come of all this. Unfortunately, you omit an important piece of information. The situation among Lyme disease patients is often desperate. Parents knowingly expose their children to the risk of serious complications from prolonged courses of intravenous antibiotics because all other treatments have been exhausted and still their children are very ill. Despite thorough medical testing, no diagnosis other than Lyme disease has been found to explain the debilitating physical conditions of their children. The regrettable yet simple explanation for this medical quagmire is that in certain areas of the country where Lyme disease is endemic, such as the Northeast, a significant number of individuals of all ages have been afflicted with a disease that is often difficult to diagnose and difficult to treat. If not treated properly, Lyme disease can result in severe disabilities and even death. It is ironic that many of those doctors who criticize other members of their profession for allegedly overdiagnosing Lyme disease and mistreating patients are the same doctors whose treatment failures fill the patient ranks of the doctors they criticize. As a parent who has lived through a four-and-a-half-year nightmare called Lyme disease and whose daughter appears to be on the mend under the care of Dr. Dorothy Pietrucha, I urge the competing medical camps to work together, not at cross purposes. Lyme disease is too serious a public health threat to allow professional rivalries to retard the advance of medical science. Doctors should share treatment data and work together to enlist the much-needed research funds. Their patients deserve nothing less. BRUCE S. COLEMAN New York, Jan. 6, 1994 =====*===== V. TIMES-PICAYUNE: Officials Won't Aid Inmate Who Needs New Heart -------------------------------------------------------------------- DATE: January 30, 1994 Sunday BYLINE: By DONALD BRADLEY The Kansas City Star DATELINE: KANSAS CITY, MO. DeWayne Murphy needs a heart transplant. Everyone says so. Doctors, lawyers, his family - even the warden at the Federal Medical Center in Rochester, Minn., where Murphy is locked up - say the Clay County man will die unless he gets a new heart. But Murphy, 33, who has congestive heart failure caused by Lyme disease, is not even on a list of transplant candidates. Although doctors report his condition is worsening, authorities oppose all attempts to get him the operation. Warden William Hedrick says the Bureau of Prisons does not provide heart transplants to inmates. But some people familiar with the case say it comes down to this: Few hearts are available for transplants. Law-abiding citizens and children come first. There's no room in the lifeboat for Murphy. He was caught three times with large amounts of methamphetamine - the last time after he had pleaded guilty to possession with intent to distribute. He could have gotten 40 years but was sentenced to four - leniency from the judge because of his health. Now the drug history and defiant behavior appear to have slammed the door on pleas from Murphy's mother and his attorneys. Murphy's release is scheduled Aug. 1, 1996. If doctors are correct, he will be dead before then. "No question, this is a tragic case," said Chris Whitley, spokesman for the U.S. attorney's office in Kansas City, Mo., which prosecuted Murphy. "But does he deserve our sympathy? Given his behavior, he's exhausted our sympathy." The case is out of the Kansas City office's hands, Whitley said. [...] =====*===== VI. Q&A: Roxithromycin and Lyme --------------------------------- Sender: Brian Klinkenberg <[email protected]> My wife and I appreciate the efforts behind the LymeNet newsletter and have found many interesting bits of information in them. We have some comments with respect to the treatment of lyme with roxithromycin. The facts: 1) We contracted Lyme in 1980 while working at Long Point, Ontario (a known Lyme hot spot in Canada) during the summer. 2) I became very sick that fall, but the doctors failed to diagnose any disease. After two months I 'completely' recovered. Initially my wife didn't get as sick -- rather, she experienced (almost continual) low grade flus, fevers, etc. that, over time, progressively became more debilitating. 3) By 1986 the symptoms were such that my wife could not work at all. After reading an article in Equinox we recognized that she had Lyme disease. After a specialist, who just moved to Vancouver from Harvard, confirmed the diagnosis, treatment began. 4) My symptoms, which had been very minor since the initial flare up, became more evident and rapidly progressively worse. Around 1988 I was diagnosed with Lyme. 5) For several years we went through just about EVERY antibiotic, both oral and IV. In every case we found that after some initial suppression, our symptoms flared up and then continued to progress. The only antibiotic which has continued to suppress the symptoms, and has continued to provide slow but steady overall improvement, has been Roxithromycin. Under our doctors direction we take four (4) tablets a day, along with some Bactrim. The Roxi appears to have had no side affects, even after taking it for several months. The scientific literature gives the impression that Roxi is not an effective antibiotic against lyme -- we definitely have a counter experience, one that suggests that Roxi be given serious consideration by Lyme patients who find that other antibiotics fail to provide relief. PS: What is the current situation with respect to the usefulness of heat therapy as an effective treatment for lyme? Once again, many thanks for the LymeNnet and the efforts that those in charge are putting into it. =====*===== VII. Q&A: Seronegative Lyme? ----------------------------- Sender: Carol Gardner <[email protected]> I am a new subscriber who has not yet read all back issues of this newsletter. Forgive me if this has already been covered. I am one of those people who has many of the symptoms of Lyme Disease, but no rash and no positive test. Consequently I have had some trouble being taken seriously. I respond well to antibiotics and am now 11 days into a 28-day regimen of IV Rocephin. I hope this will take care of it once and for all. My question is about the new test. I've read that it is reliable, and my doctor wants me to have it done. Will the fact that I've been taking antibiotics (oral and IV) for 3 months affect the result? I've read that they take joint fluid from the knee. My knees don't hurt. My hips and hands are the joints affected. Does this mean that the result could be negative even if I have Lyme Disease? =====*===== VIII. Q&A: Lyme Vaccine Testing ------------------------------- Sender: Stephen Stibler <[email protected]> This is a follow-up to article V; "Lyme Vaccine Ready for Testing" in your last issue. The West Chester County Medical Center, located in Valhalla NY, just north of White Plains, is also participating in the current vaccine study sponsored by Connaught. They are planning to begin their program between the end of February and the beginning of March, and are currently seeking volunteers. I believe that the study will involve two visits to the center by volunteers; an initial screening/ vaccination and one follow-up visit. If a participant is bitten by a tick and develops Lyme disease, treatment will be provided by the center free of charge. Residents of the surrounding areas interested in participating in this study should call (914) 285-1783 for additional information. (This is an answering machine; your call will be returned at a time that is convenient for you.) There is also a separate "Westchester County Lyme Disease Hotline" with an informational message about how to avoid Lyme Disease, the symptoms of Lyme Disease, and contact numbers for various New York counties. The number for this hotline is (914) 593-5963. =====*===== IX. Q&A: Support Group Listings --------------------------------- Sender: Carolyn OConnor <[email protected]> Would you be able to publish all of the Lyme disease support groups that you are aware of nationwide? Thanks Ed. -- The Lyme Disease Network maintains a current listing of support groups. They can be reached at 908-390-5027. In addition, Denise Lang's recently published book entitled "Coping with Lyme Disease" (reviewed in Newsletter vol#1 #20) provides readers with a list of support groups in Appendix A. However, The National LymeNet, the Lyme Disease Network's new computer network, will provide a current listing of support groups nationwide available 24 hours a day. The National LymeNet will begin beta testing on Saturday, and is expected to be widely available next month. 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