LymeNet Newsletter Volume 2 Issue 07

Volume: 2
Issue: 07
Date: 09-May-94

Table of Contents:

I. NIH NEWS: Research on Chronic Lyme Disease II. LDF CONFERENCE: Opening Remarks by Medical Director M. Ziska III. DTSCH MED WOCHENSCHR: Reinfection with Borrelia burgdorferi in an immunocompetent patient IV. How to Subscribe, Contribute, and Get Back Issues

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * ***********************************************************************

IDX# Volume 2 - Number 07 - 5/09/94 IDX# INDEX IDX# IDX# I. NIH NEWS: Research on Chronic Lyme Disease IDX# II. LDF CONFERENCE: Opening Remarks by Medical Director IDX# M. Ziska IDX# III. DTSCH MED WOCHENSCHR: Reinfection with Borrelia burgdorferi IDX# in an immunocompetent patient IDX# IV. How to Subscribe, Contribute, and Get Back Issues IDX#

QUOTE OF THE WEEK:

" One reason for not reporting [LD cases] is the fear that the clinical observation is not correct. They do the literature search to see what is accepted to be said and published. If their observation is not in line with the accepted stream of knowledge, they correct the observation. This is wrong. By correcting the observation, the genuine information it contains, as well as it's value, is lost. I find this a very serious problem, which in effect can arrest the progress in the medical discipline. "

-- Martina Ziska, MD Medical Director, The Lyme Disease Foundation (see Section II)

I. NIH NEWS: Research on Chronic Lyme Disease ------------------------------------------------ SOURCE: Office of Communications National Institute of Allergy and Infectious Diseases DATE: April 1994

In parts of the United States, the most common tick-borne disease is Lyme disease. This emerging infectious disease is caused by a spirochetal (spiral shaped) bacterium, Borrelia burgdorferi. Lyme disease usually is easily treated in the early stages with antibiotics. Patients who go untreated or who do not respond to antibiotics may develop a chronic multi-system disease with an unpredictable array of symptoms. Many of these symptoms mimic those of other diseases. Diagnostic tests that detect antibodies in the serum of the blood are imperfect, contributing further to the misdiagnosis of this disease.

Chronic Lyme disease most often produces persistent arthritis or nervous system problems, although the heart also can be involved. Lyme arthritis usually affects one or several large joints, often the knee. If the central nervous system is involved, symptoms may include headaches, nausea and vomiting, memory loss and a variety of other cognitive, behavioral and sleep problems. Involvement of the peripheral nerves can result in radiating pan in the limbs, numbness and partial paralysis.

No one knows why in some patients with late Lyme disease symptoms eventually diminish or disappear, whereas in other patients the symptoms persist. Scientists think that in some cases the spirochete may evade the immune system. It then survives in numbers too low to be detected by conventional tests, yet high enough to produce illness. Persistent symptoms also can be the result of an overactive immune response that continues to injure the host's tissues long after the organism has been eradicated. There is evidence that both of these situations occur in patients with chronic Lyme disease.

Continued research is essential to making progress against this disease. Since 1981, when an NIAID scientist first discovered the responsible organism, the Institute has supported an active research program on Lyme disease. Much of this research focuses on the pathogenesis, or disease process. This includes the study of the biology of B. burgdorferi, how it evades the immune system, how it interacts with its human host, its genetic components that allow the organism to control surface protein expression, and differences in human genes that account for the variations in the immune response among individuals.

In January 1994, NIAID convened a meeting to address the issues surrounding chronic Lyme disease. Attending were scientists involved in Lyme disease at NIH and elsewhere, physicians and patient advocates. The participants acknowledged that determining whether chronic Lyme disease is caused by persistent infection or is a post-infectious disorder is a major research goal. Finding the answer to this question for any individual patient will have an important bearing on his or her treatment.

While the participants acknowledged the difficulties in carrying out clinical trials to evaluate chronic Lyme disease, they agreed that clinical trials are necessary to resolve questions about optimal treatment.

Participants suggested that patients could be selected on the basis of relapse or non-response following appropriate treatment to combat early-stage Lyme disease. This would provide common criteria for studying and treating this multi-symptom disease. Such patients might include (1) those with persistent arthritis or persistent fatigue or fibromyalgia; (2) those with cognitive abnormalities, neuroradiculitis, headache or encephalomyelitis; (3) those with or without symptoms who have seroconverted following acute Lyme disease; (4) those with objective evidence of a continuing B. burgdorferi infection; and (5) a Lyme disease negative-control group.

The group that met in January will likely reconvene later in the year to discuss clinical trial design should funds become available to support a treatment trial for patients with chronic Lyme disease. In the interim, NIAID staff with be meeting with staff at the Centers for Disease Control and Prevention to discuss standardization of the Western Blot diagnostic test and will review new applications submitted in response to two recent solicitations. One, an NIAID Request for Applications, invited research proposals on immune responses and animal models of chronic Lyme disease. The other, a Request for Proposals, solicited contract proposals for developing animal models of chronic Lyme disease. These efforts will ultimately advance our understanding of chronic Lyme disease, and lay the groundwork for future clinical trails.

NIAID, a components of the National Institutes of Health, supports research on AIDS, tuberculosis, Lyme disease and other infectious diseases as well as allergies and immunology. NIH is an agency of the U.S. Public Health Service, U.S. Department of Health and Human Services.

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II. LDF CONFERENCE: Opening Remarks by Medical Director M. Ziska ------------------------------------------------------------------ By Martina Ziska, MD April 22, 1994

[Here are selected excerpts from the remarks made by the Lyme Disease Foundation's Medical Director, Martina Ziska, MD, at the opening of the 1994 State of the Art Conference held in Stamford, CT, April 22 & 23.]

Ladies and Gentlemen,

I would like to use this opportunity to dedicate this Conference to Doctor Paul Lavoie. There is one particular reason for this dedication -- let me explain it. I met Dr. Lavoie in person in September of last year at the time when he learned about his terminal illness.

The reason for my trip to San Francisco was to help Doctor Lavoie in his limited time organize collected data for publication and to try to capture something -- the essence of clinical medicine and science -- the value of which has been forgotten, partly because that art of doing it is not known to many any more: that something is called the ART OF MAKING CLINICAL OBSERVATIONS. I have used the word art, which is an unacceptable word in today's science.

We became too technical and forgot that patients usually carry all information necessary for diagnosis, if asked and led properly by a knowledgeable physician and if -- and this is the second condition -- the physician is able to make the correct analysis of the data and link important ones together with the right doses of suspicion and intuition.

To explain this issue better, let me use one example from history. In 1943, _Doctor Bo Bafverstedt_ from Stockholm published in Acta Dermatologica Venerologica a paper on pseudolymphomas called "Uber Lymphadenosis benigna cutis." By setting up the basic criteria, he presented 41 of his own patients and in addition discussed 101 patients from the literature.

Now, that might not sound so unusual -- after all that was not a landmark paper -- but the fact that the physician discussed 101 patients which were not his but published cases and was able to make the clinical and diagnostic connection -- that fact I find very peculiar.

Just picture this being done nowadays. Physicians do not report their own clinical observations, not to speak about evaluating patients from the literature. One reason for not reporting is the fear that the clinical observation is not correct. They do the literature search to see what is accepted to be said and published. If their observation is not in line with the accepted stream of knowledge, they correct the observation. This is wrong. By correcting the observation, the genuine information it contains, as well as it's value, is lost. I find this a very serious problem, which in effect can arrest the progress in the medical discipline.

Dr. Lavoie died this January with only one regret. During almost 20 years of practice, seeing virtually hundreds of Lyme patients, he has gathered invaluable information about the clinical course, diagnostic and treatment response to the disease -- which will never be tested by others -- because, unless published, this information cannot be shared with the medical community. This is the first step that has to be done. Carefully, but truthfully document what you see.

[...]

There is only good medicine, looking for solutions, taking risks, pursuing the truth, no matter what it costs and where it comes from. Instead of this, facts are being traded for theory and real people's problems for objects serving the purposes of science. Disarray is the word, which is disturbing to see connected to science. It expresses the impatience with surprises and disappointments from leaders who we think should command events. But to suggest that the unexpected (new, unexplained) is unacceptable in science is illogical.

There are too many dogmas in the world of Lyme disease, which are stumbling blocks on the way to answers, explanations and solutions. Instead of reasoning from the position of authority or ignorance by ostentation of seeming wisdom, the work has to be done. The areas where attention is most needed will be discussed in numerous presentations during the Conference, but let me outline at least some of them.

Starting from the end, area of treatment for Lyme disease is the most controversial one. Everybody wants the definitive treatment protocol. But does it have to be an area of controversy? Not at all if a couple things were done:

First of all, physicians need to report on what they are doing and with what results. Do they treat short or long term? How are their patients doing on various regimens? We know that various things are being done out there, but reports are missing. Secondly, clinics or places with availability for such studies should do treatment trials, especially for persistently infected people. It is amazing that after over 10 years of the existence of clinical disease there has been only one double blinded randomized controlled treatment trial on Lyme disease. No treatment trial for chronic disease ever!

Does this mean that this is not a problem? Do we want to know or is the issue being avoided? In the light of the debilitating potential Lyme disease has, how long are we going to wait to develop a well defined group of selected patients who meet the rigorous criteria? When do we start to study the invaluable clinical material which is available now from the numerous patients, a fragment of which is present here in this room? Or are we going to wait a couple more years until they are not only physically but also mentally affected? What are we going to do for them now?

This all starts from the acceptance of the problem, which is the existence of chronic Lyme infection. The resistance towards this issue has lessened only because it has now become politically correct. Don't you find this disturbing?

Too many questions, I guess, but let me add a couple more. What about gestational, congenital and pediatric Lyme disease, to name only some? Do they exist? How big a problem do they represent? Judging from the number of recent scientific studies, it's not even worth of mentioning for the marginal significance!

Why do we hear otherwise, then? Why do we register over 600 pregnant women with Lyme disease and a possible link to the fetus and newborns health problems? What is the number which will get attention? Why is nobody studying these issues? Are we taking enough responsibility towards issues likes these? I will let everybody to figure out their own answer.

Doctor Lavoie realized too late what was important to be done. We should learn the lessons till we have time. We should use all our talents and abilities to do the work, which need to be done, with humbleness and respect. We are here to make history. When we meet in a year, we should discuss the results of our work in these "blank" areas. Knowledge, however partial, can replace controversies. If that will happen, then my words -- which are to motivate and inspire -- didn't fail.

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III. DTSCH MED WOCHENSCHR: Reinfection with Borrelia burgdorferi in an immunocompetent patient -------------------------------------------------------------------- AUTHORS: Hassler D, Maiwald M REFERENCE: Dtsch Med Wochenschr 1994 Mar 11;119(10):338-42 ORGANIZATION: Hygiene-Institut der Universitat Heidelberg. ABSTRACT:

A 54-year-old patient with an intact immune system developed Lyme disease three times within 4 years. The first time an erythema migrans occurred, which was successfully treated with oral doxycycline (100 mg twice daily for 20 days). Specific antibodies were subsequently demonstrated. Re-infection nonetheless occurred a year later, again as erythema migrans. Oral doxycycline in higher dosage (three times 100 mg daily for 20 days) failed to prevent generalization of the infection with rigor, head and neck aches, myalgia, fatigue and subfebrile temperatures. There was a marked increase in Borrelia- specific antibody titre. Parenteral treatment with cefotaxime (twice daily 3 g for 12 days) was curative. But 2 years later yet another re-infection occurred with classic erythema migrans, which regressed under doxycycline. The course of the disease in this case demonstrates that Borrelia-specific antibodies do not always protect against re-infection. This may have consequences for the possible development of a vaccine.

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