Lyme Disease makes you ‘a prisoner in your own body'

A Mullingar woman is hoping to raise €25,000 to cover treatment for Lyme Disease she contracted when she was bitten by a tick in Peru in 2010.

Helena Power suffers from chronic pain 24 hours a day and says it’s impossible to do the simplest everyday tasks.

Once a “vibrant woman”, Helena loved gardening and going dancing, but now feels “alienated from friends and family” as she is unable to attend any social occasion.

She is hoping to raise the money for treatment in Germany as there is currently no treatment open to her in this country, and she is depending on loans to cover the cost of the treatment.

Speaking on Midlands 103 last week, Helena explained how the disease lay dormant for six years until 2016, when she began to experience symptoms such as chronic migraines.

“I suffered before with sinuses and then one day out of the blue I got blurry vision. I got a bad pain in my head, I thought it was a sinus attack,” Helena said.

“I went to the chemist to get Sinutab because I thought that [sinuses] was the problem. During the week it progressed, the headaches got stronger, they were constant. A week later I went to my doctor, who told me that it was probably migraine.”

Helena’s doctor prescribed various medications for migraines and vertigo, but nothing worked and she was then referred for further tests to The Hermitage in Dublin.

“My condition was getting worse, I was getting numbness in the left side of face and down my left arm... things weren’t getting any better.”

Multiple brain scans and neurological tests later, consultants were at a loss as to what was the cause.

“I was in nerve pain all down my left hand side first, and then it progressed to the other side, so I was in chronic pain from my head down to my toes all through my nervous system,” she said.

Helena tried everything the doctors prescribed, including nerve blockers and botox injections, but she still didn’t get any relief.

“It’s very debilitating, daily tasks were a struggle. I was misdiagnosed.

“I was on the private system, so I got an appointment to go to Vincent’s Hospital.

“I met the consultant up there and he went through all the treatment and he didn’t know how to go further with it.”

Then, eight weeks before Christmas, Helena went for kinesiology treatment and muscle testing and that was the first time Lyme Disease was found in her system.

Further testing indicated that she had been bitten during a holiday to Peru in South America in 2010.

“It pinpointed that I got bitten on the back of my left leg it was that exact,” she says.

Googling specialists in the field, she came across Dr John Lambert in the Mater, who referred her to Armin Laboratories in Germany for further testing, as there is no treatment in Ireland.

The tests revealed she had chronic Lyme Disease, chronic immunosuppression and coinfection.

“If I gad got the diagnosis at the beginning and had been diagnosed sooner, it would never have got to this point,” she said.

Helena now needs three weeks of treatment including IV antibiotics and a full detox.

“The consultant told me that my body is poisoned with bacteria and parasites and I have inflammation of the brain – but because it’s not through the hospital system here, and it’s in Germany, I have to pay for it all myself.”

Treatment in Germany

Already Helena has paid thousands for blood tests and flights to Germany.

The next round of treatment which will last for three weeks, followed by medication costs, will amount to €25,000.

“I have no idea what the end bill will be. I’m on invalidity benefit, so it’s getting harder to source a loan for the treatment.

“This next trip alone will cost me – between flights and accommodation and the treatment – in excess of €10,000.

“I will be on medication when I get home so I don’t know any more after that.”

Helena’s family have started a GoFundMe page and are asking for donations.

“This is my one chance to go and I’m in a chronic state.

“I’m in pain 24 hours a day – the only time I get any relief is when I sleep and I don’t get much of that.

“It’s very debilitating, it’s like you’re a prisoner in your own body,” she said.

“You feel alienated from your friends and family because you can’t attend family or social events.

“I used to love the music, love walking, I loved my gardening. It’s tough.”

Her son Gary says his mum was once a “vibrant woman”.

“She used to walk for Pieta house, she’d go to all of the fundraisers, she can’t go now.

“If she goes into a room and there’s too much light, or too much sound, it’s destroyed her.

“She’s in pain all the time – I’m just worried about her because we love her.”