Lyme Disease in Germany

by Jutta Zacharias (jzacharias@freenet.de)
www.borreliose.org

Member and Consultant of the Kassel Lyme Disease Support Group

Summary

German public media and medical literature do not communicate enough substantial information. The caveats of serological tests and the medical background of chronic Lyme need more discussion, particularly in the physician - patient interaction. Health insurances basically pay extensive testing or extended therapies when presribed by physicians. Few support groups have succeded in establishing cooperation with medical professionals. Examples of excellent German research are given.

Misconception: Ticks carry only the pathogen of spring-summer encephalitis

For years we have had detailed information on spring-summer encephalitis (or tick-borne encephalitis), and the necessary vaccination has been advertized. Pamphlets on "Tick-Vaccination" (meaning the spring-summer encephalitis) are displayed in many physicians' practices. This has contributed to the impression in the German public that there is only one tick-borne disease, i.e. spring-summer encephalitis, and against this there is vaccination available.

Whereas in Germany around 300 persons per year contract spring-summer encephalitis, official estimates of the rates of newly infected persons range between 60 000 and 100 000 persons per year.
There is an official record kept on spring-summer encephalitis, whereas there is none (unless it has caused meningitis) for Lyme disease except in a few Länder in Germany's East. Therefore the above given numbers might be too low.
In some areas aproximately 50 % of the ticks are infected with borreliae. Other pathogens, such as Ehrlichia and Babesia, have been found in Germany, but presently there are only few related epidemiological studies. Therefore it is only natural that many practicing physicians have not heard of those tick infections - and that they do not test for those after a tick bite.

Insufficient Lyme information in German literature

In the literature generally available to the public (newspapers, magazines) an increasing number of articles cautions the public of Lyme disease, but the articles lack differentiation and do not point out the dilemma of poor diagnosis and treatment. Many reports end with statements like "Lyme disease is readily curable with antibiotics when it is sufficiently early diagnosed." or "Attend to your physician who can decide on the basis of a serological test whether or not you have Lyme diease."

The German public relies on publications in German language because many of us do not understand enough English to comprehend complex medical texts. This is why our knowledge basis on Lyme disease and other tick-borne diseases is rather incomplete.
Practicing physicians generally orient themselves about Lyme and other tick-borne diseases by reading publications that have appeared in medical journals and internet publications in German language.
The controversy in the U.S.A. about persistent Lyme and long term antibiotic treatment is not mentioned in German medical journals. Interestingly, almost all medical journals did report on the results of the so called Klempner Study, mostly adding that prolonged and repeated antibiotic courses will not help in Lyme disease (not mentioning that both the applied doses and the treatment durations are still subject to scientific discussion). A large number of patients reported that many physicians trust this information.

Only few physicians attempt or have the time to do extended literature research and dedicate considerable effort to the issue. It is not unusual therefore that Lyme patients are first told the diagnosis "somatoform" or "psychosomatic" or they are treated for multiple sclerosis, fibromyalgia etc. When -long time afterwards- it becomes clear that they have Lyme, the disease has become chronic and a complete elimination of the pathogen from the body very difficult. Therefore, an autonomous patient, taking responsibility for him or herself attempts to help the physician by preparing the required material and offering to pay for the extra consultation time. The physician needs to take into account to what extent the patient is able to cooperate on the issue.

Missing discussion of medical issues

The physicians can ask the "Nationales Referenzzentrum (NRZ) für Borrelien am Max von Pettenkofer-Institut München" for advice.

Its leader, Bettina Wilske, has contributed significantly to the recombinant immunoblot patent, marketed by Microgen. A new variant of this test has been available since the beginning of last year. Nobody in Germany seems to care that the necessary objectivity of a reference center could be affected by commercial interests in a serological process. B. Wilske has performed some studies with Rocephin in the past - and published related treatment recommendations that are based on relatively short antibiotic treatment courses in all stages of Lyme. She holds the opinion that spring-summer encephalitis-like symptoms in connection with an infection with borreliae are usually no longer caused by active borreliae if prior treatment has followed her stage-specific recommendations.

Therefore it is not surprising that many physicians in Germany are convinced that Lyme is cured after one or two short courses of antibiotics. Remaining symptoms are then no longer attributed to Lyme.

This is interesting in view of a statement presented in the guidelines for neuroborreliosis of the Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften (AWMF): "Presently we have no therapy regimen that has been supported by randomized controlled studies and is widely accepted." One of the contributors to these guidelines is H.-W. Pfister with whom B. Wilske closely collaborates.

By now it has become very difficult to find a physician who is willing to treat a chronic borreliosis. Not seldom we have heard that patients -equipped with research results- have to contribute to the continued medical education and to counter prejudices in order to receive sufficiently adequate diagnosis and treatment.

In Germany there is only a handful of physicians specialized in Lyme who prescribe extended antibiotic courses, if symptoms persist, and who are willing to treat patients having chronic borreliosis. Usually, patients have to wait long for the appointment. Because these physicians often have their practices far away, they can only start the therapy and subsequently give merrely treatment advice to the patient's family doctor. It is not so easy to find a family doctor who is willing to cooperate in such a situation.

Many Lyme patients have had multiple tests but still do not know whether or not their complaints are being caused by borreliae, e.g. whether they continue to have Lyme after antibiotic treatment. Some of the reasons are:

Interlaboratory inconsistency of the Western blots - the lab quality standards vary widely in Germany.
Usually physicians follow the step-by-step diagnostic methods formulated in MiQ 2000 (B. Wilske, L. Zöller, V. Brade, H. Eiffert, U.B. Göbel, G. Stanek in cooperation with H.-W. Pfister, Quality Standards for the Microbiological Diagnosis of Infectious Diseases, formerly called Guidelines for Microbiological Diagnostics), meaning they start with an ELISA screening. Only few patients know that this test is extremely unreliable - and mostly they have no doubts when told they are Lyme negative and their complaints are caused by something else. They do not request a further diagnostic investigation with an immunoblot. Without a Lyme positive result the practicing physicians do not consider further treatment to be necessary.
Some health insurers pay for the lymphocyte transformation test (LTT). It is possible to be Western blot negative and LTT highly positive.

H. Blenk, president of the physicians specialized on epidemiology of infectious diseases stated: "The unquestionable problem are insufficient tests and missing experience of the medical professionals with this illness. The ill persons basically complain about an extraordinary decrease of their energy and pronounced tiredness - but these symptoms are generally attributed to other illnesses."

It's not the public insurances that are opposed to extended diagnosis and treatment

All employed Germans are members of the public health insurance system if their income is below a certain threshold. Half of the insurance fees are paid by the employer and the other half by the empoyee. The medical bills are paid by the "Kassenärztliche Vereinigung", the association of those physicians who have accepted the payment system of the public health insurers. It is thus the physicians who distribute the insurance money - and the insurances have no insight into the individual payments.

So, in Germany it is basically no problem to receive antibiotic treatement if one finds a prescribing physician.
Furthermore, it is basically no problem to have all possible serological tests being made if the physician agrees.

The "bottleneck" is somewhere else: The federal government fixed a cap on the total financial budget of the medication every physician may prescribe. Concerned with his budget, a physician does not use intravenous antibiotics if -along the lines described above- the diagnosis is ambiguous and treatment is not indicated, unless his/her patient offers to pay privately (which on the other hand might bring the patient to the brink of financial ruin). So, patients report that their physicians send them on to colleagues after they diagnosed chronic borreliosis.

Perspectives: Information available on the internet, activism, collaboration between physician and support group

Information by support groups and active individuals, the increased utilization of the internet, all this seems to start telling physicians that Lyme may persist and cause serious illness. Physicians start calling support groups for information, because they realize that the official information by the influential researchers are unable to explain the complex picture they are confronted with.

In Germany there are presently only few active patients who work continuously on the problems of Lyme or tick-borne diseases.
Political activism is poorly developed.
Local support groups mostly advise patients and inform about the illness.
Active patients work predominantly on a voluntary and unpaid basis and thus their efforts and time are limited. Lyme sufferers need to take responsibility for themselves after they were being helped and possibly pass on that help to others, thus enlarging the self help basis. This attitude seems uncommon in Germany.
Some support groups have contacts with Lyme Literate Medical Doctors and researchers. They seldom cooperate within a formal institutionalized framework. Physicians' collaboration within support groups is an exception. The Kassel support group organizes annual congresses with various scientists, and these congresses tend to be credited as continued medical education (CME). This year, members of the International Lyme and Associated Diseases Society (ILADS) will attend.

Research

At present we have ongoing remarkable research in Germany:

Zipfel and co-workerss on immune evasion of borreliae,
Hassler and co-workers on cytokines and treatment with doxycycline and neupogen, a granulocyte-colony stimulating factor (G-CSF),
Straubinger on cystic forms.

There is presently no pharma-independent research.

Research on tick-borne diseases seems to shrink in Germany. One of the reasons might be that all parties involved (labs, physicians, pharmaceutical industry) continue to be making good money from the present dilemma.

A political support culture is needed in Germany. We could learn a lot from American support groups.

version; 5.5.03
please send comments and questions to Jutta Zacharias