Tuesday 20 March 2018

Living with Lyme Disease: 'I was throwing up all day, I couldn't see properly, I was confused and had heart palpitations'

When she moved to Canada, Denise Ryan loved life there. But, over time she became very ill and came home. Following a diagnosis of Lyme disease, she discovered there was little help for her here in Ireland

Denise Ryan: There is a suffocating fear with being this ill. Photo: Tony Gavin.
Denise Ryan: There is a suffocating fear with being this ill. Photo: Tony Gavin.

Joy Orpen

Though 30-year-old Denise Ryan is five feet four, she weighs only six stone.

She is painfully thin because her gut is full of infections, so she cannot elicit nourishment from the food and medication she ingests. It seems her condition is so complex that currently, the Irish health system is powerless to help her, so she desperately needs to go to the US for treatment. But where is the funding to come from?

Sick and weak as Denise is, it appears it is up to her to find the finances so she can get the help she so desperately needs.

Denise has lived in Rathfarnham all her life. She says she has suffered from digestive and immunity problems since she was a baby.

Read more: The Dracula Bug: Why you should be wary of dangerous ticks

Nonetheless, after school she went to the Institute of Technology, Tallaght, to study audio-visual media. That was followed by a move to Toronto six years ago, where Denise worked for a website company. She says she felt very comfortable in Canada. "I arrived just before Thanksgiving and was invited to spend the holidays with friends, even though I'd only known them a week," she says. "I loved the place and the people - they are so warm - well, the people are, not the winters!"

At about this time, Denise started to feel really unwell. Then, about four years ago, she started to deteriorate quite badly. "I was throwing up all day, I couldn't see properly, I was confused and had heart palpitations."

Read more: Avoiding ticks and other bugs

She had various investigative procedures including a colonoscopy, a barium swallow, blood, urine and hormone tests. But nothing conclusive was discovered. By now the palpitations were getting very scary. "I thought I was going to have a heart attack and die," she remembers with a shudder.

So Denise came home and though various tests were done, no cause could be found for her ill health. In desperation, she saw a naturopath who had worked in mainstream medicine. Having gone through her medical history, she recommended that Denise be tested for Lyme disease.

Unfortunately, Denise couldn't afford to have the relatively expensive tests, which were only available abroad. So she applied for a disability grant, but this took 18 months to process. "If it's in the early stages, they can test for it here, but if it's more advanced, then it's a different matter," says Denise. When she finally had the necessary funds, about 11 phials of blood were taken by a local doctor and sent on to a laboratory in Germany. "The lab sent the results to the GP, who had to email them back to get an interpretation of what the complex results meant," says Denise.

Lyme disease was detected, along with a number of co-infections. According to the HSE's health protection and surveillance centre: "Lyme disease, also known as Lyme borelliosis, is an infection caused by a bacterium that is transmitted to humans by bites from ticks infected with the bacteria." And according to the support group Tick Talk Ireland, Lyme disease is the world's fastest-growing vector-borne (fed by ticks) disease. They say symptoms can vary greatly depending on "the immune system of the sufferer, stress, length of infection as well as the level of co-infections in the body." Their list of possible symptoms includes a tell-tale rash at the site of the bite (it appears in about half the cases), headaches, sight problems, tremors, heart palpitations, diarrhoea, bone pain, chronic fatigue, unexplained fevers, low body temperature, and so on.

Certainly, Denise can recall two occasions in Canada when she experienced tick bites. She has also been diagnosed with a number of other infections, including parasitic, fungal and viral varieties. Denise says that her body is now so toxic that doctors here are at a loss as to what to do with her.

"Last year, a GP prescribed anti-parasitic medication. A few days later, I touched my head and every clump of hair came away. I was completely bald. I thought, 'I must be dreaming'," she says. "Lyme disease also affects your central nervous system and that includes your brain. So things can seem absolutely surreal. I feel so helpless with all this going on."

Read more: A shooting pain in my foot... then it spread over my body

Denise says her days consist of very little. Her attention span is almost non-existent, so she watches Blue Planet, a nature programme, and George Clooney movies. "I find his voice very soothing," she admits.

She doesn't go out and it is all she can do to get a little food inside her, while struggling to stay warm. This is in stark contrast to her life pre-Lyme disease. "I used to make friends really easily," she offers. "I loved music, film and photography. I was never much of a clubber; I preferred sitting in a pub and talking to people."

Right now, Denise believes her condition has progressed to a "life-threatening state. I'm completely debilitated, and after seeking treatment all over Ireland, the UK and Canada, I am left with only one option," she says.

Read more: Dealing with Erectile Dysfunction: 'Having an erection is an integral part of your masculinity'

And that is a hospital in Seattle, in the US, where the staff specialise in dealing with chronic rare illnesses such as Lyme disease. She has already spent a month in a clinic in California, but it emerged that her condition was so bad she needed at least three months of intensive intravenous treatment.

She was then referred to the Sophia Health Institute in Seattle. Its website says its mission is "to treat the true, underlying causes of complex chronic illnesses".

Read more: Triple Tragedy: 'I've lost my wife and her siblings to deadly lung disease IPF'

So Denise is fund-raising in the hope that she can go back to America for the help she so desperately requires. It will cost in excess of €30,000, and because that seemed like such a lot of money, she looked at it another way. "I thought, 'that's 3,000 tenners' and that made it seem possible," she says. So 3,000 tenners is what she called her gofundme campaign. She explains that while she has already raised money, she used some of that on the first treatment in California.

Now she is hoping to be seen by a senior consultant in the US in March. In the meantime, she does her best to keep her spirits up.

Read more: Former GAA star Oisin McConville on his gambling addiction: 'I felt as if the walls were closing in on me and I became suicidal'

"As incredible as my friends and family have been, there is a suffocating fear and loneliness that accompanies being this ill," Denise says. "I try to stay positive and believe help will come. Every donation, however small, is a tremendous help. It's a huge endeavour, but I have to try. I'm not giving up."

To donate, see gofundme.com/3000tenners and for further information on Lyme disease, see ticktalkireland.org

Sunday Indo Life Magazine

Life Newsletter

Our digest of the week's juiciest lifestyle titbits.

Editors Choice

Also in Life