North-east Lyme disease sufferer urges change to medical guidelines
woman who paid £10,000 for treatment calls for doctors to be more aware of condition
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A north-east Lyme disease sufferer who has had to pay more than £10,000 for her treatment so far has urged medical practitioners to be more aware of the illness and change their approach to it.
Nicola Seal, who fought for appropriate treatment for around six months after falling ill following a tick bite on Rum in March last year, is calling for a change in guidelines for doctors.
The 35-year-old, who was eventually diagnosed with Lyme disease by a private specialist in Hemel Hempstead in Hertfordshire, also called for more awareness among the public and urged people to check themselves regularly and painstakingly if they had been in a tick habitat such as the Highlands.
She said: “I was always very active and outdoorsy. I had lots of tick bites in the past but had never really thought about it. I had this one for about 24 hours before I found it and then fell ill about 10 days later. I had really bad stomach ache, sore knees, a stiff neck, headaches and felt really fluey.”
Doctors initially diagnosed Lyme disease in her nervous system but blood tests and other procedures came back negative. They said months later that it was either post-viral fatigue or psychiatric.
By the time she went to see the Lyme specialist, she could barely walk, could not stand without falling over, was unable to concentrate for more than a few minutes and had stopped driving.
Specialists prescribed a 12-week course of intravenous antibiotics. NHS Grampian funded the first four weeks, the maximum allowable under NHS guidelines, but Miss Seal had to fund the rest, as well as the oral antibiotics she now takes.
Miss Seal, of Fairview Circle in Aberdeen, said the chronic condition was now more manageable but that muscle weakness recurred about every four weeks.
The ecologist warned: “It is not the doctors’ fault, it is the guidelines but there should be some discretion in interpreting them.
“Late diagnoses, in a lot of people, causes irrevocable damage. Sufferers can be house-bound, wheelchair-bound and brain damaged and it can kill people. The consequences of catching Lyme disease can be really severe. It has turned my life upside down.”
The charity Lyme Disease Action is leading a campaign for new Europe-specific guidelines for the medical profession on the diagnosis and treatment of the disease rather than the current controversial American guidelines – which claim chronic Lyme disease does not exist.
For more information visit www.lymedisease action.org.uk
Readers' Comments
Many thanks to Nicola and to the Press & Journal for publicising Lyme Disease. I became ill many years ago with recurring flu-like symptoms and brain fogginess, pains that moved around from joint to joint, I became progressively more fatigued, found it difficult to sleep, developed severe migraines, nausea and vomiting, pneumonia, memory loss and then suddenly became anaemic and had to be hospitalised and given a blood transfusion in 2007. By then I was too ill to carry on working. I was examined by numerous doctors, including infectious diseases specialists, and I was told they could find nothing wrong - perhaps it was just stress-related. I was eventually given a diagnosis of Chronic Fatigue Syndrome, but I started researching my peculiar range of symptoms myself on the internet. They matched Lyme Disease and I then found the same private specialist as Nicola. I turned out to have 3 different strains of Lyme infections, plus several nasty co-infections that often come along with Lyme. One of them is similar to malaria and can be fatal. I'm finally on the right treatment, and although I have a long way to go I'm already beginning to have a better quality of life. I wholeheartedly support Lyme Disease Action's campaign for new European-specific guidelines. Like Nicola, I don't blame my doctors - they aren't given enough information about Lyme at the moment, which makes it very difficult for them to suspect it. Lyme Disease has derailed my life - because the infections were left untreated they became chronic and my central nervous system has been affected. With proper diagnosis and treatment years ago this could have been avoided. Many thanks again for this article.
Lesley Fraser
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I think a good 50% of the US population has it. You can get Lyme from ticks, fleas, lice, mosquitos and other people. The best way to beat a late diagnosed case is to get lots of opinions. I recently found a site from a track athlete named perry fields (http://www.beatlymedisease.com ) and she had a terrible tick infection but was able to recover fully and go back to athletics. This is rare as people who are late diagnosed with it have a hard time getting healthy.
Chaz Butler
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