Lancaster man's 12-year fight to have debilitating condition recognised
Simon Hutchinson was just months away from graduating from Lancaster University and had his first job lined up when out of the blue he contracted Lyme disease.
Now 32, Simon has been unable to work since due to the crippling symptoms caused by the condition – which he says many doctors still won’t recognise.
“I was repeatedly told I didn’t have anything wrong with me, that it was all in my head,” he said.
“Overnight I went from an energetic Lancaster University graduate with a first class degree and promising career to a very sick, exhausted and confused disabled patient who was repeatedly accused of wasting doctors’ time.”
Lyme disease is contracted through tick bites and if not treated correctly in the early stages can have a devastating impact on health, as the bacteria can infect different parts of the body and brain.
After years of carrying out his own research, private tests and therapies, strict diets and expensive supplements, Simon looked abroad, sending a blood test to Germany which came back positive for Lyme disease.
“This was even in the face of my doctor’s continued insistance that it was a waste of time and would come back normal or even that the condition doesn’t exist,” he said.
Simon has since been ‘officially’ diagnosed with chronic fatigue syndrome, but continues to fight to prove that Lyme disease is a condition which needs to be taken more seriously.
He believes a lack of knowledge of Lyme disease in the UK has led to him being misdiagnosed on numerous occasions with conditions ranging from irritable bowel syndrome to depression.
The National Institute for Health and Care Excellence (NICE) – which provides national guidance and advice to improve health and social care – recently updated its guidelines on Lyme disease, and Simon hopes fresh calls for the government to provide funding for reasearch will lead to the condition becoming more widely recognised.
Simon first fell ill at the age of 20, about six months before he was due to sit his finals for a degree in environmental biology at Lancaster University.
“I had a job lined up but I was too ill to do it, and I have not been able to work since,” he said.
“It’s not that I don’t want to do things, I just physically can’t.”
Simon’s symptoms began shortly after a field trip to Scotland with university and undertaking a course of hedgelaying.
“I had a big red rash, but not the typical bullseye rash associated with Lyme disease,” he said.
“One day I set off on my bike for university and suddenly I felt really ill. It was like feeling poisoned.
“I felt exhausted like I had flu. I went back home thinking it would go but it didn’t, the symptoms kept getting worse.”
Simon’s symptoms included feeling nauseus, overheated, and fatigue ‘like having lead weights all over my body’.
“Almost immediately all my ability to think things through and remember things went,” he said. “I knew something was wrong but I couldn’t express it.
“It started overnight and it got worse when I tried to push through it.
“It got to a point where if I did something I just couldn’t move. It was like I was paralysed.”
Simon went to his GP but says it took a long time before he felt like he was being taken seriously.
“I felt like they didn’t believe me,” he said. “They had the approach of dismissing me and putting me off.
“Eventually, about a year later, I had blood tests and was referred to the RLI out-patients.
“They said it was probably chronic fatigue syndrome (CFS).
“I was told to do exercise to force my way through it, but that just made me more ill.”
Simon’s symptoms began to worsen, including recurring fevers, shaking bouts, insomnia, constant nausea and terrible fatigue.
He would often spend days in bed due to exhaustion.
Over the last 12 years Simon has seen up to 100 different specialists, yet no one has been able to accurately identify his illness.
At one point he was given a colonoscopy which exacerbated his symptoms, leaving him in hospital for one-and-a-half weeks after his stomach started to shut down.
“I was told it could be irritable bowel syndrome or depression,” he said.
“A microbiologist once told me that people just like to say they have got Lyme disease because it’s fashionable.
“Eventually I saw a GP who took the time to ask me about my past. He said it sounded a lot like Lyme disease.
“I had already had a test which came back negative but he looked into it, and that was the first time in 10 years.
“He found that the test is very inaccurate and can often come back as a false negative.
“Eventually I did another test about three years ago which was sent to Germany and it came back positive, but other GPs don’t acknowledge it because it was a private test.
“The frustrating thing is that the more you read about it the more complicated it gets. Everything you think you know, there’s an exception to it.
“The fatigue is a big issue now but I have got used to it so I don’t do anything physical and I sleep a lot.
“I am hot all the time from fevers, I have a really bad memory, and I shake a lot from a background tremor.
“I also have headaches and neck pain, stomach problems, problems sleeping and severe fatigue.
“I will get a flare-up where I will just go to bed for days.
“It’s very up and down at the moment so I am not really getting out; it’s very cyclical.”
Simon, who lives in Halton with his partner Amy, says if he was diagnosed officially with Lyme disease, he could be given a simple four-week course of antibiotics.
“I kept getting told I had all the symptoms of Lyme disease yet the test was negative, so they would say I didn’t have it,” he said. “Getting a diagnosis is massive because you know what’s going on then and can be treated; you have got a leg to stand on.
“The number of times I have reported a new symptom and been told it’s just in my head or anxiety.
“Before I was diagnosed with CFS I was put on anti-depressants, I was 21 and I was told I would never get better.
“You feel like you are going mad but then you see there are thousands of other people with the same symptoms and history and they are not being diagnosed either.
“More needs to be done to raise awareness, especially among GPs. Awareness is massively important because the treatment is so simple.
“There’s treatment available but you have to be able to afford it until it becomes available in the UK.
“At the moment there are no specialists here that can help, but I am hoping more will be available to help me in the future.
“More research needs to be done. There’s so little about but there’s evidence out there that is available.
“Since I got it 12 years ago things have changed a lot and GPs have heard of it now. At the time they thought it wasn’t in this country or this far north.
“The NICE guidelines were rewritten recently because they said there was no evidence.
“Getting that was a big thing but it now needs the evidence to be put with it.”
Simon, who grew up in Lancaster and went to Torrisholme Primary School and then Heysham High, said he is determined not to give up his fight to have his condition officially recognised.
“For a long time I just wanted to get out of the really bad state I was in and I have done that now,” he said.
“I am determined to get better. People do get better but they usually have the money to afford treatment.
“My story is very familiar. I’ve met a number of people in the local area with similar experience of being disbelieved.
“Someone else was told by a GP that Lyme disease doesn’t exist in this country.
“Doctors are unaware of Lyme disease even though there is a training package available; doctors are not pro-active, and sometimes they lack compassion and patience.
“It’s not just that they aren’t helping, but they’re hindering the chances of recovery for many of the thousands affected. Lyme disease is one of the most under researched illnesses in the western world. The NHS urgently need to carry out research into this debilitating disease with a view to formulating a treatment protocol.”
*For more information about Lyme disease go to caudwelllyme.com or LymeDiseaseUK.com.
What is Lyme disease?
Lyme disease is a bacterial infection spread to humans by infected ticks. It can affect the skin, joints and muscles, as well as the heart and nervous system.
What are the symptoms of Lyme disease?
The earliest and most common symptom of Lyme disease is a pink or red circular rash that develops around the area of the bite, three to 30 days after someone is bitten. The rash is often described as looking like a bullseye on a dart board. You may also experience flu-like symptoms, such as tiredness, headaches and muscle or joint pain. Tick bites often go unnoticed and the tick can remain feeding for several days before dropping off. The longer the tick is in place, the higher the risk of it passing on the infection. If Lyme disease is left untreated, further symptoms may develop months or even years later and can include muscle pain, joint pain and swelling of the joints, and neurological symptoms, such as temporary paralysis of the facial muscles. Lyme disease in its late stages can trigger symptoms similar to those of fibromyalgia or chronic fatigue syndrome. A person with Lyme disease is not contagious because the infection can only be spread by ticks.
How common is Lyme disease?
Lyme disease is the most common tick-borne infectious disease in the UK, Europe and North America. People who spend time in woodland or heath areas are more at risk of developing Lyme disease because these areas are where tick-carrying animals, such as deer and mice, live. Public Health England estimates there are 2,000 to 3,000 cases of Lyme disease in England and Wales each year, and that about 15 per cent of cases occur while people are abroad. Cases of Lyme disease have been reported throughout the UK, but areas known to have a particularly high population of ticks include Exmoor, the New Forest in Hampshire, the South Downs, parts of Wiltshire and Berkshire, Thetford Forest in Norfolk, the Lake District, the Yorkshire Moors and the Scottish Highlands. Most tick bites happen in late spring, early summer and autumn because these are the times of year when most people take part in outdoor activities, such as hiking and camping.
Preventing Lyme disease
The best way of preventing Lyme disease is to avoid being bitten when you are in wooded or heath areas known to have a high tick population. The following precautions might help prevent Lyme disease: Wear a long-sleeved shirt, tuck your trousers into your socks, use insect repellent, check yourself, your children and pets for ticks. If you do find a tick on your or your child’s skin, remove it by gently gripping it as close to the skin as possible, preferably using fine-toothed tweezers, and pull steadily away from the skin. Never use a lit cigarette end, a match head or essential oils to force the tick out.