Man thought he would die after symptoms of Lyme disease were mistaken for a stroke
Zoe Drewett, 31 Jul 2019
Andrew McGuinness was told he had multiple sclerosis and told he had two strokes before his diagnosis for Lyme disease (Picture: supplied/Getty)
An author suffered in agony until he experienced suicidal thoughts because his Lyme disease was misdiagnosed for two years.
Andrew McGuinness, 52, was wrongly told he had multiple sclerosis, a brain tumour and even that he had suffered two strokes.
In reality, he had been bitten by a tick and become infected with Lyme disease.
It would be two painful years before he found out.
The author, of Whitstable, Kent, said: ‘Often people with Lyme disease are misdiagnosed because many of the symptoms are the same as that of a cold or flu.
‘My misdiagnosis was pretty life-changing. The entire time, nobody knew what it was.’
Andrew lost his ability to read and write and was forced to give up his job as a lecturer at Kent university as the bacterial infection took hold of his body.
Andrew said the lack of awareness around Lyme disease and a resistance to investigate it for him left him feeling angry and frustrated (Picture: supplied)
There was so little awareness of Lyme disease even among medical professionals that eventually, Andrew diagnosed himself after online research.
In 2010, Andrew noticed a strange rash that was initially diagnosed as cellulitis, a skin condition, contracted from an insect bite.
A few weeks later, he began developing other symptoms that he put down to being under the weather, or suffering from the flu.
But instead of lasting a few days, the illnesses would last him weeks.
He said: ‘I remember being in a supermarket with my wife and almost fainting. I had a fever and I was always exhausted.’
Next he started suffering from a stiff and painful neck. He now knows that this was the point at which the Lyme disease infected his spinal fluid, with bacteria entering his brain and attacking his central nervous system.
But he was told to take painkillers and that eventually he would return to normal.
The most extreme reaction happened about a year after the initial cellulitis diagnosis, when Andrew suddenly lost the feeling in the left half of his body.
He said: ‘I just went completely numb all down one side. I was absolutely terrified.
‘I was actually so terrified that I didn’t even tell my wife for a number of hours until I thought, actually, this might be something very serious.
‘She rushed me to A&E and they said, you are suffering a stroke.’
Humans can contract Lyme disease if they are bitten by infected ticks (Picture: Getty)
Andrew was given blood thinning medication and eventually sent home, but seven days later, the same thing happened again.
He said: ‘The other half went numb. They said ‘you’ve had another stroke’. I thought ‘I might not survive this’.’
But after several tests and monitoring, doctors started to realise a stroke wasn’t behind the sudden numbness.
Instead, he was seen by neurologists, who began to suspect Andrew may have multiple sclerosis.
He said: ‘They did a lot of tests and MS was never explicitly mentioned but I knew what they were testing for.’
When the tests revealed swelling in his brain, Andrew was given the diagnosis he was dreading.
He said: ‘I was devastated. My sister-in-law had MS and I had watched her condition deteriorate. I knew that to be diagnosed as a man in my 40s probably meant it would come on quite rapidly.
‘I assumed the worst, saw myself incapacitated. Actually it made me very, very depressed.’
But the confusion continued when his medication for MS actually made him more ill and he was told he did not have the condition after all.
Andrew said: ‘When I was signed off treatment for MS I really thought I had nowhere else to go with this.
If caught early enough, Lyme disease can be treated with antibiotics (Picture: Getty)
‘Eventually I went online and did research on my own and that led me to Lyme disease.
‘Up until that point, my symptoms had been treated individually by different doctors – there had been no communication or no linking of symptoms.
‘It suddenly became clear they were all connected.’
Official estimates put the number of cases of Lyme disease in the UK at around 2000 – but new research reveals the actual number of people with the disease could be closer to 8,000.
Lyme disease has been found in every region in the UK, particularly in Scotland and the south of England.
Researchers hope the new figures will increase awareness, as early intervention could prevent some of the long-term problems that Andrew now suffers.
He said: ‘If I have been diagnosed the very first time I went into hospital, I would have been given antibiotics and it would have gone away.’
Andrew wrote semi-autobiographical fiction novel Anatomised in part to help raise awareness of Lyme disease (Picture: supplied)
Instead, he said not knowing what was wrong with him left him feeling suicidal.
He said: ‘I felt incredibly angry and frustrated, I felt a lot of resistance from my GP and the NHS in wanting to treat Lyme and find out more about it.’
Andrew still suffers with fatigue and has the constant feeling his hands are burning, taking strong medication typically prescribed to epilepsy sufferers every day to cope.
He spent four years writing a semi-autobiographical novel about his experience in the hope it would help others avoid the suffering he has faced.
The author said: ‘My main feeling is that I wanted people to know that being diagnosed with Lyme disease doesn’t mean your life is over.
‘I am so glad it has helped other people to find out more about the condition and helped other people with Lyme.
‘It’s all about raising awareness. We need to make as many people aware as possible as this is obviously a lot more common than first thought.’