Real numbers of Lyme patients are not known in the UK

See Lancet comment – Real numbers of Lyme patients are not known in the UK

Phillips et al. use the phrase ‘a growing
problem with Lyme disease’, however, it is
possible that this may not be the recent
phenomenon that the phrase implies. There
is no irrefutable reason why such a
bacterium, or one of its close relatives, might

not have established a bridgehead of
infection in our population and remained
undetected for quite some time. Large
numbers of patients with long-term illness
and polysymptomatic presentation, possibly
in keeping with a diagnosis of Lyme
borreliosis, have existed in
the patient
population for at least several decades, and
arguably for much longer. Often patients
placed in this category are diagnosed by
allocating them to variously defined
syndromes on the basis of excluding other
diseases. Lack of knowledge of the cause of

many of these syndromes has inevitably
created therapeutic uncertainty.

In addition, there have been reported
problems with laboratory tests for Lyme
borreliosis in the UK (1) and the Centers for
Disease Control and Prevention state that the
diagnosis of Lyme is
ultimately a clinical one.
Furthermore, it is impossible to exclude the
concept that there may be several ways in
which this bacterium and its tick hosts
interface with man and other warm-blooded
animals. Over-reliance on estimates of
infection rates based on
surveillance of the
carrier ticks in the outdoor environment may
not be yielding the necessary information if,
for instance, infected ticks take blood in a
scenario outside the scope of the
surveillance. The surveillance of human
blood could also be flawed for, as
indicated
above, testing is subject to uncertainties and
variable interpretation (1),(2). We are
cautious therefore about placing too much
reliance on any of the current estimated data
about risk and infection rates.

Given the above uncertainties, which in the

worst case might mean that there are more
Lyme borreliosis patients than are currently
recognised, we concur with Phillips et al. in
their case that the best hope for patients is
speedy and effective treatment. To do
otherwise leaves patients open to potentially

disastrous consequences.

Yours sincerely

Stephanie Woodcock
Chair
Lyme Disease Action
Registered Çharity 1100448
https://www.lymediseaseaction.org.uk

References:
(1) J.Med Microbiol 54 (2005), 1139 – 1141;
Audit of the laboratory
diagnosis of Lyme
disease in Scotland. Roger Evans, Sally Mavin
and Darrel O. Ho Yen.

(2) J.Clin Microbiol 38, (2000), 2097 – 2102;
A European Multicenter study of
Immunoblotting in Serodiagnosis of Lyme
Borreliosis. J. Robertson et al.