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Girl, 13, may be paralysed by disease that baffled doctors for six months - but her mother diagnosed on the internet
Last updated at 13:53pm on 16.07.08
A schoolgirl who has been left bed-ridden with a serious illness for six months, was only diagnosed after her mother looked up her symptoms on the internet.
Danielle Fisher, 13, fell ill in October and doctors were baffled by her mysterious condition.
Her mother Dominique, 35, took her to the doctors after she began suffering from viral meningitis-like symptoms, including severe headaches and fatigue.
Over the next few months, Danielle's condition worsened as her eyes became ultra-sensitive to light and she began suffering from vertigo and shortness of breath.
Danielle Fisher has been left bed-ridden by Lyme Disease after doctors failed to diagnose the condition for six months
Danielle, from Whitefield, Greater Manchester, attended various doctor and hospital appointments where she was diagnosed with a variety of possible illnesses, including meningitis, Epstein-Bar virus, a tumour and even psychological problems.
Her mother, 35, said, 'She was admitted to hospital a few times, she was in and out for a long time and we got an array of diagnoses which were all wrong.
'She was diagnosed with Epstein-Bar virus, without the glandular fever. Then meningitis, then the psychiatrist comment was the best one.
'They even suggested it could be a clot or a tumour at one point, which was worrying.
'The last time she was in, the doctor said there's nothing wrong with her, she needs a psychiatrist, which I knew was wrong, the poor girl could hardly walk.'
Frustrated at the lack of an appropriate diagnosis, Dominique, who is an estate agent, was so worried that she began doing some research herself on the internet into Danielle's symptoms.
She had severe vertigo and couldn't walk any more
She was shocked to discover her daughter's illness may have been caused by a bite from a tick, a tiny spider-like blood-sucking parasite which usually feeds off animals.
Dominique said, 'I'd begun doing some research myself by then as she had severe vertigo, couldn't walk any more and had severe muscle and joint pain.
'I came across Lyme Disease and it just seemed to fit. There's a lot of controversy over the treatment of the disease and over diagnosing the disease.
'I took Danielle to see a professor in Newcastle privately and he diagnosed her with Lyme Disease and three core infections. That's why she was so ill.
'If it hadn't have been diagnosed, she could have become paralysed or blind.'
Danielle's condition was diagnosed as borreliosis, also known as Lyme Disease in April. If left untreated, it can cause nerve damage, paralysis and blindness.
The Manchester schoolgirl is now taking several courses of antibiotics to treat the condition but it is feared she may never fully recover.
'If she had been diagnosed straight away, it would have been a course of six weeks of antibiotics but now she's on heavy antibiotics. It's gone past the blood-brain barrier,' Danielle's mother said.
'Thankfully she is now on a course of treatment and we are just hoping as much as we can that she will get better. On one extreme she could be better in weeks and on the other extreme she might always be like she is now. '
Dominique added: 'Danielle is fed up. She's lost a lot of weight, she's miserable and she just wants to be better. She just wants to be back at school and with her friends.'
The disease has seen a fivefold increase in Britain in the past decade.
'It's staggering that this has been caused by one bite. Danielle is literally bed-ridden. She can barely walk because she is so weak and she gets tired really easily.
'This disease is a lot more common than people think and I just want to make people aware of it.'
'It can happen anywhere in the UK. There seems to be quite a lot of it in certain big parks. It's like an unlucky lottery, it can happen to anyone.'
Wendy Fox, Chairperson and Director of BADA (Borreliosis and Associated Diseases Awareness UK) said: 'Doctors need to be much more aware of early signs and symptoms, the fact that ticks can carry more than one infection concurrently and the fact that rashes can differ to those in medical journals."
Currently the only defence against Lyme Disease in the UK is wearing sensible clothing, using repellent and being aware of possible symptoms.
Reader views (9)
would be interested to know who doctor is? my daughter has been ill for 12 years just been diagnosed with bartonella a co-infection of lyme but doctors still not interested in treating as they say it won't still be active, yet antibodies are present.
She is totally bedbound with massive neurological symptoms.
Any help would be greatly appreciated.
- Anne-Marie Studden, Somerset, UK
I would like to echo an earlier post. My son has just been diagnosed this evening with Lymes - he has the classic bullseye rash that came up 5 days after returning from a week camping in the New Forest. Our local GP dismissed my concerns earlier today, but after reading this story, I still felt very uneasy and took him to our local hospital. The consultant there was 90% certain that he has Lymes, and now he is on a course of antibiotics, that will hopefully prevent any of the problems that this poor girl has. He is also being followed up by the hospital. I have had to be insistent to have my concerns heard - that doesn't come naturally for me, but I'm very glad that I listened to my intuition today.
- Bridget, UK
We have just had a diagnosis of Lyme on our second eldest daughter since we visited a National Trust property on Monday near Manchester. Only because we have been thorough a similar experience to Danielle's with our eldest daughter when living in Massachusetts did we know what to suggest to the doctor as a diagnosis. If we didn't know the symptoms (rash appeared by Wednesday in three bites) we would certainly not have had that diagnosis as the doctor knew nothing about it, although he had heard recent news about the disease.
We are now working to inform all our friends and acquaintances about the disease. Readers may wish to do the same.
I wonder if the occurrence of the disease has increased, rather than the reporting/diagnosis of it.
- Sally, Buxton, UK.
I too am a Lyme disease sufferer, and I was bitten in Bushy Park in Teddington, where I used to walk regularly to see the deer and beautiful scenery. I was blissfully ignorant due to NO warning signs about ticks for the public. Too many people have to self-diagnose using the internet, and I was no exception. I didn't relate my "bulls-eye" rash in Feb '07 to the severe shoulder pain I started to experience in May '07, which was subsequently followed by numerous other awful symptoms. However, after being referred by my GP for numerous "separate" illnesses, and also being told that it couldn't be Lyme, I consulted 2 private doctors and it turned out my "separate" symptoms were all related to different types of bacteria - Borrelia (Lyme), Bartonella, Erhlichia and Chlamydia Pneumoniae - all transmitted by a single tick bite. We need people to be more aware and we need reliable tests to be available on the NHS which will be read and interpreted correctly. This is serious!
- M.D, Kingston, Surrey
Lyme disease is actually named after Old Lyme, Connecticut, where a cluster of sick children got the attention of a rheumatologist, Dr. Allen Steere, who named the disease. Unfortunately, Dr. Steere is one of the primary reasons Lyme disease doesn't get the attention it deserves, from researchers or physicians. He looked at the illness as a short bacterial issue treatable with 2 weeks of antibiotics. Any symptoms left after the treatment were considered rheumatological and in his domain (natch). As a result, hundreds of thousands of people are fighting chronic Lyme because it wasn't treated or treated thoroughly enough by antibiotics in the first place.
In the US, the CDC estimates there are 200,000 new cases of Lyme each year. Yet there are only a hand full of doctors who know how to treat the disease. We know because my teenage daughter has a very similar story. We're just now getting her on the road to recovery after battling with supposedly the best medical minds in Boston (Children's Hospital). They insisted it was idiopathic, probably psychiatric, and she needed to learn to live with the pain. Now we know all she needed was antibiotics for the 3 tick diseases she contracted: Lyme, Babesia, and Bartonella. (Watch out of those co-infections, they can be worse than the Lyme)
I highly recommend the new book, Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub. Excellent overview of the research and the challenges we all face by this near epidemic disease.
- Sharilee, Worcester, MA, USA
I contracted Lyme disease after being bitten in Scotland. Luckily I am totally recovered but many are not so lucky.
Lyme disease is named after the town of 'Old Lyme' in Connecticut, US, where a cluster of cases were discovered in the 1970s. It isn't named after Lyme Regis but, as in many places in the UK, cases have occurred there.
Both ticks and Borreliosis (Lyme disease) are on the increase but cases may be missed due to the varied symptoms and lack of an Erythema Migrans (EM) or 'bull's-eye rash'. There are different strains of the causative bacteria and some don't present with a rash or the rash may not look like the bull's-eye.
As mentioned, Borreliosis & Associated Diseases Awareness-UK is a registered charity that exists to raise awareness and to teach simple methods of disease prevention. All their information is endorsed by the Chartered Institute of Environmental Health.
- Andy, Notts
Lyme disease is actually named after Lyme Regis (Dorset, UK), but it's much commoner in the Eastern USA where there is a continuous public awareness campaign about it.
The main thing to look out for is a circular rash spreading outwards from an insect bite for a few weeks. It's painless, and eventually fades away, and you could easily ignore it. The trouble is that this is the start of a serious long-term infection, not the end of it, as this lady's case demonstrates. If you see this rash (search the net for pictures) insist on a Lyme disease blood test. If it's caught early, it's easy to cure. Left untreated, eventually it can be fatal.
- Nigel, London
We commend you for speaking out on this, and most of us have found out about this travesty ourselves online.
Please, please arm yourself with this scientific data:
The CDC/IDSA et. al have committed scientific fraud at the Second
National Conference on Serologic Diagnosis of Lyme
Disease, a/k/a The Dearborn Conference, in 1994. They changed the diagnostic standard 41+ year old ELISA (EIA) test to "screen out" most of us. That is how the CDC states, "under reported by 10X or more."
You and your family deserve to know the truth, "Why we
are all so sick and being misdiagnosed."
We will pray for her to go into remission.
- Freethinker, Southern Illinois us
How about balancing this story with those of the thousands of people who use the internet, diagnose themselves wrongly and waste huge amounts of doctors time and taxpayers money?
- Kevin, London
