Page last updated at 01:08 GMT, Saturday, 8 November 2008

'I found my own diagnosis on the net'

By Jane Elliott
Health reporter, BBC News

Denzil Searle
Denzil felt his condition was not taken seriously
When Denzil Searle first fell ill he assumed he had flu.

But after a few days it became clear that it was something else.

His GP suspected tonsillitis and prescribed a course of antibiotics, but after an initial improvement Denzil's health deteriorated again.

"The symptoms developed from what seemed like a very bad flu to neurological symptoms and severe fatigue.

"I could not walk more than 150 yards. I was in constant pain and had a stiff neck, muscle and joint pains.

I came across Lyme disease and started reading about that and the more I read the more it fitted
Denzil Searle

"It was as if there was not enough energy in the muscles to move me along.

"I had numb and tingling feelings that would last a few days before moving somewhere else in the body, I suffered heart irregularities and sleep deprivation."

Denzil, aged 38, said his GP appeared uninterested and so he trawled the internet to try to match his symptoms to conditions.

Negative test

"I found a few alternatives and ruled them out. Then I came across Lyme disease. The more I read the more it fitted," said Denzil, a design engineer from Cornwall.

"I didn't want to be accused of fixation on Lyme, so after I found out about it I went through all the differential diagnoses I could find to see if anything else fitted, including things like chronic fatigue syndrome and multiple sclerosis, but nothing came close to fitting as well as Lyme, given my history of tick bites and wide range of symptoms."

His GP eventually agreed to have him tested for Lyme disease only for the tests to come back negative.

But Denzil's research had shown this wasn't uncommon, so he decided not to give up.

"I know that I am not prone to any kind of psychosomatic disorders and I knew they were real symptoms."

Treatment started

"I came across Lyme Disease Action (LDA) and through them got in touch with a doctor, Dr David Owen, in Cardiff. I went to see him April 2006, the year after I fell ill.

"I had a very thorough hour-long session and he confirmed that I almost certainly had Lyme disease and wrote to my GP to say that.

"My GP ignored that so I had to start private treatment on high dose antibiotics, at the cost of about 800.

"Within a few weeks I was feeling the benefits. I was on them for a year and have been improving slowly since.

Lyme Disease tick - Ixodes ricinus. Photo Credit KH Kjeldsen, SPL
Lyme disease is passed on via tick bites

"I am sure if I had not seen Dr Owen and had not got the treatment I did that my quality of life would have remained poor."

Dr Owen, a GP in Cardiff and an expert in treating Lyme disease, said he was very concerned about the efficiency of tests on offer, which only pick up about 50% of cases.

He said doctors should be looking at the history of a patient before ruling out Lyme disease, and said should take into account whether the patient has been bitten by ticks.

"The disease has non-specific symptoms, unlike many conditions, and if it is suspected the patient should be treated for this even if the tests are negative."

Diagnosis and testing

A spokeswoman for the LDA said that more needs to be done.

Clinicians in the UK have ready access to the best Lyme disease diagnostic tests available
Department of Health

"The Department of Health seems to be intent on ignoring a ground swell of patient concern and adopting a position that the status quo is fine.

"Many patients who have been seriously ill for years, with no NHS support, beg to disagree."

Denzil's local MP, Julia Goldsworthy, member for Falmouth and Camborne, is calling for the Department of Health to look again at the problem and has raised an early day motion called for UK guidelines to be set up.

"The Department of Health really needs to look at this issue again."

A Department of Health spokesperson said clinicians in the UK had access to the best Lyme disease diagnostic tests available, which conformed to internationally agreed criteria.

A Health Protection Agency spokesman agreed that the guidelines produced by the Infectious Diseases Society of America (IDSA), which are followed in the UK, were the most comprehensive and based on the best available scientific evidence.

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