Julia relives her battle with Lyme disease to help raise awareness

Lyme disease sufferer, Julia Knight
Lyme disease sufferer, Julia Knight
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Norfolk and Suffolk are among the highest risk areas for ticks and, given the UK’s growing problem of tick-borne disease, as part of Tick Awareness Month we are aiming to open your eyes to the dangers.

For Lyme disease sufferer Julia Knight this warning comes too late, but she hopes that telling her story will save others from the same fate.

A tick up close

A tick up close

In May 1999, the mother-of-three took her youngest daughter and a friend on a short half-term break to Thetford Forest.

Towards the end of their stay she noticed something irritating the skin just behind her left armpit.

She could not see anything and ignored it but it persisted weeks later – she now believes this was the result of an embedded tick.

“Life went on but in July I started to feel unwell,” she said.

A tick on a dog

A tick on a dog

“I couldn’t put my finger on why I felt unwell but started developing huge bruise-like marks on my legs.”

She was checked over by a doctor and found to be only slightly anaemic, but in October came the ‘big crash’.

“I was grey, could only whisper and it felt like I was listening to everybody coming to my aid from underwater; all the voices were distant and muffled – it took me nearly an hour to feel normal again,” she said.

“Over the coming two weeks it happened twice again. I was admitted to hospital, a barrage of tests done but the doctors had no clue as to what was wrong.

“Within the next two weeks I became so weak I could hardly walk, talk, eat, read or write and found it impossible to do most normal things myself.

“I would have patches of feeling extreme panic but I had no idea why.

“Finally my sleep disappeared completely. I was awake over the 1999/2000 Christmas and Millennium New Year celebrations for about eight days. It was horrifying.

“I was admitted to hospital as my body was shutting down from lack of sleep but no amount of drugs the doctors fed me would make me sleep.”

By January Julia could take no more and arranged to see a neurologist who diagnosed her with Myalgic Encephalopathy (ME), also known as Chronic Fatigue Syndrome.

“Although I accepted his diagnosis, deep down I thought he must be wrong,” she said. “I’d never complained of fatigue, my body seemed to have just stopped working so how could I have ME?”

Sadly, she continued to deteriorate and eventually it became so unbearable that she tried to take her own life.

“The next seven years were like being a prisoner,” said the 61-year-old. “I literally went from bed to sofa every day and stayed there ‘till bedtime again. It was like being buried alive.

“I was such an active person before, this was like torture.

“In 2001 it all got too much and I took an overdose. I was a shell of my old self and couldn’t bear my husband and children to see me like this.”

Luckily, she survived and with the help of a ‘fantastic’ community psychiatric nurse she able to begin coming to terms with her life.

Her husband left her in 2006 and, though she was not sure how she would cope, it was the birth of her first grandchild shortly after which, she says, gave her the strength to try to rebuild her life.

Bit by bit she started doing more until one day she realised she was ‘living’ again, albeit with many limitations.

In 2007 her old friend, John, came back into her life and in 2014 they were married. They moved to the United Arab Emirates after he retired from the Royal Air Force, where they continue to live today.

It was not until last year that Julia, a retired senior nurse, saw an article on Lyme disease, a condition she had been ‘totally unaware’ of previously, and started to connect the dots.

It was written by Phones4U founder John Caudwell who set up the Caudwell Lyme Disease charity after he, along with 14 other members of his family, tested positive for Lyme – a crippling tick-borne infection which can become a chronic, debilitating and disabling condition if not treated adequately in the first few weeks.

Julia said: “I started to read more and more about people with ME testing positive for Lyme years after diagnosis.”

Her doctor in the UAE sent blood samples to America to test for the disease, but they came back negative.

“I then found out the American tests often don’t test for the European strains of Borrelia, the bacteria that causes Lyme, so decided to get tested in Europe,” said Julia, who found a laboratory in Germany to repeat the test.

“Despite the Borrelia test still coming back negative, a lot of the other tests that can go with Lyme were positive.

“The doctor who runs the lab explained the many reasons why some people will never get a positive Borelia test but, taking into account my history, symptoms and other tests, he was confident that I had untreated Lyme disease. I consulted a doctor in the UK who deals with Lyme and she totally agreed.”

Julia was ‘elated’ to finally unravel what had happened to her and was expecting to start treatment soon.

But she has since found out that she has a badly damaged pancreas which cannot be treated, leaving her ‘in limbo’ once more.

She said: “Many people who abuse alcohol get this disease but I am a life-long non-drinker and smoker. I was horrified. How on earth could I have so much damage inside of me?

“Both Lyme doctors I mentioned feel that the untreated bacterial infection the Lyme causes could have done the damage but I am still undergoing tests to find out why.

“This condition impinges on my ability to take the heavy antibiotics needed to cure me of Lyme disease so I am once again in limbo but will fight on and hopefully will be able to treat the Lyme at some stage in the near future.”

Meanwhile, she believes it is her responsibility to continue raising the profile of Lyme, doing for others what John Caudwell did for her.

To find out more about the disease, visit www.caudwelllyme.com

For Lyme Disease UK’s patient support network go to www.lymediseaseuk.com

Understanding Lyme disease:

* Lyme disease is caused by a corkscrew-shaped bacteria called Borrelia.

* It is also passed congenitally from infected mother to baby and through blood transfusions.

* It should be a clinical diagnosis – based on symptoms – as blood tests are not very reliable.

* Borrelia is transmitted through the bite of an infected tick.

* Nymph ticks are the most contagious and can be as small as a poppy seed.

* Thetford Forest is one of the nine most tick-infested spots in the UK, as reported by Public Health England (PHE).

* The Big Tick Project, run by researchers at University of Bristol, has been mapping ticks found on dogs and cats throughout Britain and has found that Norfolk is the country’s highest risk area.

Symptoms of the disease and illnesses it can mimic:

* First symptoms of acute infection are often similar to flu - fevers, night sweats, extreme tiredness, swollen glands, muscle and joint pain, nausea, stiff neck and headaches.

* The disease is usually invisible but some patients get a circular, reddish bull’s-eye rash.

* Symptoms of chronic Lyme disease may include sensitivity to light, oversensitivity to sound, unexplained hair loss, facial paralysis, jaw pain, memory loss, stammering speech, confusion, tremors, poor balance, all over body pain, unusual depression, too much sleep or insomnia, heart palpitations, digestive issues, nausea and many more.

* If left untreated it can attack the whole body, including the nervous system, brain, heart and joints. It can also cause paralysis in some parts of the body, blindness or mental illness.

* It can mimic many different illnesses including multiple sclerosis, Parkinson’s, ME, Chronic Fatigue Syndrome, autism (in young children), fibromyalgia and depression.

Advice from Animal Health Trust veterinary charity:

* On what dogs can get from ticks, Mayanek Seth, head of internal medicine, said Lyme disease was still the biggest concern for vets.

* Not all dogs exposed to Lyme disease get infected but clinical signs can be very vague so it can be overlooked.

* Most common clinical signs include swollen joints, lameness (in one or more legs), lethargy and fever (can come and go).

* To reduce risks dog owners should use preventative treatments (often prescription medications), check dogs after going out (particularly in folds of skin, in between toes and inside ears) and take care to remove ticks intact (using tick hooks helps).