OT: ME (Myalgic Encephalomyelitis) Essential ~ Dr Ho-Yen on LD and ME

[Guest guest]

For those who don't know

Dr. Darrel Ho-Yen is the Scottish equivalent of England / Wales' Sue

O'Connell

and her Lyme disease Reference Unit. Gill

From ME Essential, Issue 100. October 2006 pages 20 and 21.

 

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:

 

The Internet has the best information on Lyme diseaseThis 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_ (http://www.dodonabooks/) ..<WBR

 

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.

=================================

(Further facts)

(Picture of an engorged tick `The culprit – a tick)

 

Fears over Lyme Disease as ticks flourish

>From the Daily Mail, September 1st.

 

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.