Sometimes the experts need help: Bernard Dixon on a disease discovered by worried villagers

CONFRONTED by claims that tantrums are caused by raspberry jam, or headaches by electricity pylons, scientists soon reach for that subtly pejorative word 'irrational'. Their impatience is sometimes soundly based. But not always. For, as proved exactly 10 years ago by Borrelia burgdorferi, lobby groups can be right when the experts are wrong.

B. burgdorferi, a microscopic spirochaete similar to the microbe that causes syphilis, was unknown until the early Eighties. In the Seventies tenacious 'lay' observers were consistently highlighting, against a mass of expert opinion, the unusual symptoms of an illness. The perseverance of these members of the public forced the experts to investigate further, and the illness was eventually linked to the microbe.

This is the story of Lyme disease, a form of arthritis caused by B. burgdorferi, which is carried by ticks that usually live on deer. Around this time of year doctors are reminded that Lyme disease may occur over the summer in areas such as the New Forest. Although the chances of infection are very low and the disease can be cured with antibiotics, chronic pain and damage to the heart and nervous system may follow if the infection is not diagnosed and treated promptly.

The tale began in Connecticut in 1975, when a vigilant mother noticed that 12 children in the village of Lyme (population 5,000) had been diagnosed as having juvenile rheumatoid arthritis. Local doctors appeared unconcerned. So the woman, increasingly perplexed and worried, decided to report the matter to her state health department.

Around the same time, and quite independently, another villager telephoned the Yale Rheumatology Clinic announcing that there was an 'epidemic of arthritis' in her family. This pattern, too, had not been picked up by the otherwise meticulous health surveillance machinery of the state of Connecticut.

At first, officials were deeply sceptical about the Lyme claims. They were impatient with the villagers' demands that the mystery be investigated. Who had ever heard of arthritis appearing as an epidemic? Arthritis was not an infectious disease; it was a degenerative condition associated with ageing. There was no way in which it could spread around a community, like chickenpox or measles.

Fortunately, one research group at Yale did take the women seriously and began to monitor what was happening. By 1977 scientists were convinced that there was indeed an outbreak of arthritis in and around Lyme. As well as aching joints and a stiff neck, it caused headache and fever. It tended to begin in the summer and appeared several weeks after an unusual spot suddenly developed on the skin.

The first real clue to solving the mystery came from one patient who recalled having been bitten by a tick at the site of the spot. Gradually, researchers discovered that a particular type of tick, usually carried by deer, was in turn the carrier of the microbe that might cause the disease. Further detective work led to the isolation of a characteristic type of spirochaete from the tick. Antibodies against the microbe were also found in the blood of Lyme arthritis victims.

Researchers slotted the final piece into the jigsaw when they isolated the spirochaete from patients' blood. Dr Willy Burgdorfer and his colleagues reported these historic findings in the New England Journal of Medicine in March 1983. Shortly afterwards Dr Burgdorfer joined Louis Pasteur and other pioneer microbiologists in having a virulent microbe named in his honour.

Lyme disease has since been reported, mainly in sporadic cases, in parts of Britain, the Swiss Alps, southern Germany and Austria, the Russian Steppes and Australia. Descriptive records strongly suggest that the infection occurred in Europe earlier this century, long before it was properly identified.

In the US, more precise confirmation of its earlier existence has come from a new method of amplifying tiny quantities of DNA. By examining tick specimens in museum collections, researchers demonstrated that DNA characteristic of the spirochaete - and presumably, therefore, the parasite itself - had existed as early as the Forties.

It is in the US that Lyme disease poses by far its major threat to human health. As the journal Science commented recently: 'In the Northeast, where lawns are crawling with disease-carrying ticks and tens of thousands of people have fallen ill since the early 1980s, anxiety about Lyme disease runs high.'

In this part of the US, the white- footed mouse is a long-term 'reservoir' for B. burgdorferi. The deer tick acquires the spirochaete from the mouse and then passes it on in turn to humans. In California a different variety of tick, the western black-legged tick, transmits the spirochaete to humans.

Science has taught us much, comparatively quickly, about Lyme disease. But we should remember that what brought the problem properly to light, and triggered real research into the infection, was public, rather than professional, disquiet.

PROMOTED VIDEO
Arts and Entertainment
Standing the test of time: Michael J Fox and Christopher Lloyd in 'Back to the Future'
filmReview: A week late, Secret Cinema arrives as interactive screening goes Back to the Future
News
Chancellor George Osborne, along with the Prime Minister, have been 'complacently claiming the economy is now fixed', according to shadow Chancellor Ed Balls
i100... which is awkward, because he is their boss, after all
Travel
travel
Arts and Entertainment
Sydney and Melbourne are locked in a row over giant milk crates
artCultural relations between Sydney and Melbourne soured by row over milk crate art instillation
Arts and Entertainment
Adèle Exarchopoulos and Léa Seydoux play teeneage lovers in the French erotic drama 'Blue Is The Warmest Colour' - The survey found four times as many women admitting to same-sex experiences than 20 years ago
filmBlue Is The Warmest Colour, Bojack Horseman and Hobbit on the way
Arts and Entertainment
Preparations begin for Edinburgh Festival 2014
Edinburgh festivalAll the best shows to see at Edinburgh this year
News
ebookA unique anthology of reporting and analysis of a crucial period of history
News
i100
News
Kenny Ireland, pictured in 2010.
peopleBenidorm, actor was just 68
Environment
View from the Llanberis Track to the mountain lake Llyn
Du’r Arddu
environmentA large chunk of Mount Snowdon, in north Wales, is up for sale
Arts and Entertainment
arts + ents
News
Morrissey pictured in 2013
people
Independent
Travel Shop
the manor
Up to 70% off luxury travel
on city breaks Find out more
santorini
Up to 70% off luxury travel
on chic beach resorts Find out more
sardina foodie
Up to 70% off luxury travel
on country retreats Find out more
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

iJobs Job Widget
iJobs General

Principle Geotechnical Engineer

£55000 - £65000 Per Annum: The Green Recruitment Company: The Green Recruitmen...

Renewable Energy Construction Manager

£40000 - £50000 Per Annum: The Green Recruitment Company: The Green Recruitmen...

Senior Wind Energy Due Diligence Project Manager

£50000 - £60000 Per Annum: The Green Recruitment Company: The Green Recruitmen...

Offshore Wind Project Engineer

£40000 - £50000 Per Annum: The Green Recruitment Company: The Green Recruitmen...

Day In a Page

Dress the Gaza situation up all you like, but the truth hurts

Robert Fisk on Gaza conflict

Dress the situation up all you like, but the truth hurts
Save the tiger: Tiger, tiger burning less brightly as numbers plummet

Tiger, tiger burning less brightly

When William Blake wrote his famous poem there were probably more than 100,000 tigers in the wild. These days they probably number around 3,200
5 News's Andy Bell retraces his grandfather's steps on the First World War battlefields

In grandfather's footsteps

5 News's political editor Andy Bell only knows his grandfather from the compelling diary he kept during WWI. But when he returned to the killing fields where Edwin Vaughan suffered so much, his ancestor came to life
Lifestyle guru Martha Stewart reveals she has flying robot ... to take photos of her farm

Martha Stewart has flying robot

The lifestyle guru used the drone to get a bird's eye view her 153-acre farm in Bedford, New York
Former Labour minister Meg Hillier has demanded 'pootling lanes' for women cyclists

Do women cyclists need 'pootling lanes'?

Simon Usborne (who's more of a hurtler) explains why winning the space race is key to happy riding
A tale of two presidents: George W Bush downs his paintbrush to pen father’s life story

A tale of two presidents

George W Bush downs his paintbrush to pen father’s life story
Restaurateur Mitch Tonks has given the Great Western Pullman dining car a makeover

The dining car makes a comeback

Restaurateur Mitch Tonks has given the Great Western Pullman dining car a makeover
Gallery rage: How are institutions tackling the discomfort of overcrowding this summer?

Gallery rage

How are institutions tackling the discomfort of overcrowding this summer?
Louis van Gaal has £500,000 video surveillance system installed to monitor Manchester United players

Eye on the prize

Louis van Gaal has £500,000 video surveillance system installed to monitor Manchester United players
Women's rugby: Tamara Taylor adds fuel to the ire in quest to land World Cup

Women's rugby

Tamara Taylor adds fuel to the ire in quest to land World Cup
Save the tiger: The day America’s love of backyard tigers led to a horrific bloodbath

The day America’s love of backyard tigers led to a horrific bloodbath

With only six per cent of the US population of these amazing big cats held in zoos, the Zanesville incident in 2011 was inevitable
Samuel Beckett's biographer reveals secrets of the writer's time as a French Resistance spy

How Samuel Beckett became a French Resistance spy

As this year's Samuel Beckett festival opens in Enniskillen, James Knowlson, recalls how the Irish writer risked his life for liberty and narrowly escaped capture by the Gestapo
We will remember them: relatives still honour those who fought in the Great War

We will remember them

Relatives still honour those who fought in the Great War
Star Wars Episode VII is being shot on film - and now Kodak is launching a last-ditch bid to keep celluloid alive

Kodak's last-ditch bid to keep celluloid alive

Director J J Abrams and a few digital refuseniks shoot movies on film. Simon Usborne wonders what the fuss is about
Once stilted and melodramatic, Hollywood is giving acting in video games a makeover

Acting in video games gets a makeover

David Crookes meets two of the genre's most popular voices