Lyme Disease - let's dispel the myths
LD specialist Dr. Darrel Ho-Yen urges caution over the bug that can be
confused with ME
The Internet has fuelled hysteria about Lyme disease. Lyme disease (LD) was
discovered in 1975, with the first human case due to Borrelia burgdorferi
being identified in 1983.
Whereas many may know that I wrote the first book on ME, Better Recovery from
Viral Illnesses, in 1985, and that this book is now in its fourth edition,
many may not know that my first scientific publication on Lyme disease was in
1989, and that our laboratory in Inverness provides a Lyme testing service for
Scotland.
More importantly, I receive many emails, letters and telephone calls on LD
from all over the world. Such communications have one thing in common:
patients are worried about LD. Such anxieties and concerns are based on what
they have heard or read and what they are being told by friends and relatives.
These Myths are many and varied, including:
The Internet has the best information on Lyme disease
This seems a very reasonable statement as the Internet has access to the most
experts worldwide. The difficulty is separating the right information from
the wrong. There needs to be judgement on what is being said. Unfortunately,
looking for the right information can be like looking for a needle in a
haystack. It may be difficult to find. In many cases, information on LD and
ME is wrong.
Doctors are ignorant of LD
This appears to be an outrageous statement but has elements of truth in it.
LD is a recently identified illness and is described as "an emerging
infection." This means that many doctors have not studied this infection at
medical school and that more information is emerging on this disease. This is
not uncommon in medicine and indeed is to be expected. It also has to be
balanced by the fact that not all areas of Britain have equal prevalence of
LD. There are many urban areas where LD is very uncommon whereas in rural
areas there is greater awareness and knowledge. Again, this is not a
judgement on the medical profession but simply a reflection of reality. Those
doctors in rural areas have to diagnose and manage LD.
Most ME is Lyme Disease
LD is characterised by early and late disease. The clinical syndromes of
early disease are well recognised, such as the characteristic rash (erythema
migrans); whereas late disease has characteristic clinical syndromes (for
example, dermatological, cardiac, rheumatoid), but also
includes a fatigue state. Therefore, it is only the late disease fatigue
state that has common features with ME. Overall, this may represent only 10%
of all LD infections. It is certainly not the majority of LD infections and
most ME sufferers do not have LD. In the Highlands of Scotland, we have the
greatest tick populations and it has been my routine in the investigation of
ME patients to have them
tested for LD. In this large series of patients who have had very significant
exposure to ticks, the number of ME patients who have LD as the cause of their
illness is around 5%.
Antibiotics can cure LD
This is a very attractive proposition. The truth of the matter is that in LD,
early disease is amenable to antibiotic treatment and is curative.
Unfortunately, late disease does not have the same response
to antibiotics. In other countries, this has meant that prolonged treatment
with antibiotics (often a year or longer) has been recommended. The very need
for such prolonged treatment with antibiotics suggests that the success rate
is not good. Indeed, it is difficult to separate the natural improvement that
occurs with chronic disease from the effects of antibiotic treatment.
Antibiotic treatment has limited success in late LD patients with symptoms
comparable to that of ME. Instead, such patients should be managed, as is
explained in my book, Better Recovery from Viral Illnesses, fourth edition,
www.dodonabooks.co.uk
All laboratories produce dependable results
All NHS laboratories in Britain have to be accredited by Clinical Pathology
Accreditation (UK) Ltd. If there is a diagnosis of LD without such
accreditation, the diagnosis is suspect. Many patients are also seeking
diagnosis by European or American Laboratories, and many such laboratories do
not have appropriate accreditation. It is important to recognise that
accreditation allows the user to have confidence in the report. Unaccredited
laboratories can produce suspect results and may be influenced by the patient
paying for the test. Within the accredited laboratory, all of its procedures
have to be reproducible and subject to internal and external quality
assurance. This guarantees that quality of the product to the user. Anyone
receiving a diagnosis of LD should ensure that this is from an accredited
laboratory.
Misleading expert comment
Experts have said that LD is ten times more common than is reported. This is
absolutely true. Unfortunately, this statement is usually applied to all LD
infections: from asymptomatic, flu-like illness to the well-defined clinical
presentations. The number of patients that fall into the group of late LD
with a comparable illness such as ME is small. LD accounts for 5% of ME
patients in an area where there is great tick exposure. In future, if there
is better diagnosis of LD, the amount of
patients could double. However, the important consideration is how these
patients should be managed.
Summary
LD is a new, emerging infection. Much is being written and discovered about
this infection, and most of it is exciting and very helpful. Unfortunately,
the Internet and certain groups have emphasised 10% of the information on LD
rather than the 90%. It is important that all ME patients have a balanced
approach to information on LD, especially as the management of late LD
patients is similar to that of ME patients in which there are no obvious
infectious disease causes. The answer is in making a balanced judgement,
taking responsibility for your illness and sticking to guidelines. To blame
others for not getting a diagnosis or appropriate management may not be
helpful. In the end, it is a matter of what makes you better.
*Dr. Darrel Ho-Yen is head of microbiology at the Raigmore Hospital,
Inverness.
Rising temperatures have sparked a boom in the number of ticks carrying
a dangerous blood-borne disease, experts have warned.
The increase in levels of the insect has put people in danger of
contracting Lyme Disease, which if left undiagnosed can trigger serious
heart and joint problems.
The rise was noticed after scientists were instructed by the Government
to investigate why increasing numbers of farm animals were developing a
virus transmitted by the parasites. They found there had been an
apparent rise in ticks in recent months in Britain and warned this also
had alarming implications for humans.
Last year there were 600 laboratory confirmed cases of Lyme Disease in
England and Wales, however some believe as many as 2,000 people may now
be catching it every year. People are particularly at risk when in
forests or in long grass where they are more likely to be bitten by the
insects.
The Department for Environment, Food and Rural Affairs (Defra)
commissioned Professor Sarah Randolph from the Zoology Department at
Oxford University to investigate what was triggering the rise.
Although her work will not be completed for another year, she already
has results back from 136 locations across the country.
Based on the findings so far, she concluded: "Evidence does seem to
indicate an increase in tick numbers. Everyone does seem to be
concerned with an increase in incidence of certain diseases.
Then there is also the very important issue of ticks' hosts which are
mostly deer in the UK and also sheep and cattle."
The disease is caused by a bacteria which ticks carry and is transmitted
into the person when it begins to draw blood.
Lyme Disease was discovered following a cluster of cases in the 1970s
among young people living in Old Lyme in Connecticut, USA. However it
is thought to have been around in Europe since the 1880s.
It often begins with flu-like symptoms and then several days or weeks
later 60 per cent of people notice an expanding rash. At this stage it
can be treated with antibiotics, but if it is allowed to progress it can
become very difficult to beat.
It can then lead to long-term fatigue, plus create problems in the
heart, joints and nervous system.
ME Essential October 2006.
