It’s like watching someone grow old right in front of my eyes
Lyme is an insidious disease – not only can it rob people of their life & sanity it can also cause much frustration due to lack of knowledge on how best to treat the disease at ALL stages (rather than just the method of 3 weeks suited to early acute infections). Even getting diagnosed is a battle in itself with many Lyme sufferers getting the diagnosis of chronic fatigue syndrome or told their symptoms are in all in their head. Sadly, as well as a great deal of pain, fatigue & neurological symptoms on the patient’s life, those close to them including loved ones & carers will find it hard coping with seeing a previously active person go from bad to worse right in front of their very eyes. A loved one of mine said they ‘it’s like watching someone grow old right in front of my eyes’ (even though I’m 12 years younger!). Feeling & looking like I’m 80 can be a good way to describe it – even down to the loss of memory.
Some people sadly can suffer from even more horrendous problems such as disability, early death due to organ or heart damage or even death from suicide. Getting treatment is sometimes nigh on impossible so many have to seek out private health care.
A widow of Alasdair Crockett re-tells the story of her husband’s demise through suicide in the documentary One Tick Away produced by BADA-UK, after he was bitten by an infected tick. The Daily Mail at the time reported the following (snippets of report contained below):
One of the country’s top experts on modern life may have killed himself after catching a rare brain disease from a tiny insect bite.
University professor Alasdair Crockett was found dead in woods near his home on Saturday 48 hours after he was reported missing.
His distraught widow has told police that the leading academic was suffering from anxiety after he was bitten by a wood tick that carries the potentially-deadly Lyme Disease.
Cambridge-educated Dr Crockett, who held a Masters Philosophy degree, specialised in the sociology of religion and 19th century economic history.
But his life changed as he was forced to come to terms with the more serious long-term effects of Lyme Disease, an illness initially caused by an insect bite and often picked up by walkers and ramblers.
If treatment is not given early enough the disease can lead to severe mental illness such as schizophrenia.
A spokesman for Essex police said that Dr Crockett had been exhibiting symptoms of extreme anxiety which is among the effects of the disease in its advanced stages.
Lyme Disease is caused by a single bite of a spider-like wood tick found in forests and on moorland all over the country, often where there are deer.
The initial symptoms of a rash, drowsiness and muscle pains can normally be treated successfully with anti-biotics.
But in extremely rare cases it can develop and become a chronic illness which slowly destroys the nervous system. It leads to loss of hearing, numbness and can eventually cause serious mental health problems such as schizophrenia.
Due to the problems of psychiatric illness & Lyme, the organisation International Lyme & Associated Diseases (ILADS) have produced a downloadable brochure which lists some of the psychological manifestations following a tick-borne infection.
Here I relay a sad story of a young girl who was infected in the New Forest at the age of 13..
Woman whose courage was an inspiration dies aged 38
Tuesday 4th November 2010 By Jill Harding
Rachel Coxon was an active 13-year-old looking forward to a bright future when she was bitten by a tick during a family day out in the New Forest.
The seemingly minor incident led to her contracting Lyme disease and she was left paralysed from the chest down.
Despite the adversity she faced, her father John said she showed amazing strength of character.
“She was such a positive person,” he said.
“Rachel suffered more than any person should ever have to, but her inner strength was incredible.
“Everyone who met her was impressed by how she faced adversity.
“Her smile lit up the room and she had a wonderful, warm, loving personality.”
Earlier this year Rachel was diagnosed with cancer and she died last Monday.
“She showed the same bravery right up to the end,” said her father.
Rachel was born in South Shields and moved to Salisbury when she was five.
She went to Woodlands first and Avon middle schools and had just started at the former Westwood St Thomas school when she was bitten by the insect.
“Rachel had so much to live for – she was academically brilliant, she could swim like a fish, was the star of the school netball team and a promising clarinet player and it was all taken away,” said Mr Coxon.
“The paralysis came and went between the ages of 13 and 16 and then crept up her body.
“But she didn’t let it stop her. She camped at Glastonbury Festival, went on holiday to America and Spain and anyone who walks along the river from Butts Road where she lived into town will know how much she loved going out into Salisbury.”
In 2003 the Journal supported a campaign to buy Rachel a wheelchair she could control with her chin to allow her to move independently.
Generous readers helped to raise £6,000 and Rachel was presented with her chair, which will now be donated to Salisbury District Hospital’s spinal unit.
Rachel was a member of St Paul’s Church and the Kings Church in Salisbury and had many friends in the city.
“She should have been a wife and mother – she adorned kids and was like a surrogate mother to many of her friends’ children,” said Mr Coxon.
“Everyone who knew Rachel said they were privileged to have met her.
“Her character made people admire her and she truly was an inspiration.”
Rachel’s mother Margaret sadly died in 2008 after a long illness. Such a tragic tale.
We need to do more to ensure patients get proper care & attention through better diagnostic testing & better management of the disease. It can hit people in a multitude of ways & people respond to treatment in their own way. This is why guidelines set out by the Infectious Disease Society of America (IDSA) is highly inadequate & is too narrow in its recommendations. Let’s hope things will change for the better soon. Remember, A tick in time saves Lyme!
For advice on tackling depression please go to Aware.ie