Lyme Disease in Germany
by Jutta Zacharias (firstname.lastname@example.org)
Member and Consultant of the Kassel
Lyme Disease Support Group
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
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
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
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."
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.
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
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.
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:
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."
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.
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.
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
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.
Perspectives: Information available
on the internet, activism, collaboration between physician and support
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
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.
At present we have ongoing remarkable
research in Germany:
There is presently no pharma-independent
Zipfel and co-workerss on immune evasion
Hassler and co-workers on cytokines
and treatment with doxycycline and neupogen, a granulocyte-colony stimulating
Straubinger on cystic forms.
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.
please send comments and questions
to Jutta Zacharias