BIG READ: Twenty-one months, five A&E visits and over eighty symptoms but no diagnosis

Dolores Egan (56), a native of Moneygall now in Leitrim, lives with life-changing symptoms but has had no diagnosis.

She believes she suffers from Lymes disease but says that her doctors do not take her seriously. Dolores shared her story with the Tipperary Live in the hopes of raising awareness about Lyme disease and how difficult it can be to get the help you need.

"The reason I'm doing this is I've heard other stories about other people in my situation, and they are not being believed, and doctors are not taking them seriously here in this country, and what they have is as real as anything else.

It's as real as covid or cancer. It's as real as Alzheimer's disease, but for some reason, I can't tell you why and people keep asking the question why is it not recognised. I don't know why," said Dolores.

A walk and a picnic

On May 12 2020, Dolores returned from a walk and picnic by a canal close to where she lives with a mark on her neck and a tingling sensation in her nose.

At the time, she didn't think it was serious, but later that night, it had worsened and spread to her entire body. She also had a fever, headache and hot and cold flushes.

"I knew it wasn't right. This was out of the ordinary, this was not what you would normally have, so then I rang for an ambulance," said Dolores.

Dolores was taken to hospital and admitted to the A&E. She was shivering despite the heating in the hospital being adequate.

The doctor performed a series of tests, including an ECG and blood tests, all of which came back clear.

"He just said to me it could be some sort of allergy or something like that, so take antihistamines, so he let me out at about half six with all these strange symptoms. There was no mention… like he wasn't going to refer me to someone else straight away. I was just let out of the hospital, and that was it," said Dolores.

Back to A&E
When Dolores got home, she decided to visit her GP, who prescribed steroids if it happened again.

The following night it did. Dolores's face and neck swelled up, and she couldn't breathe or walk.
She took the steroids her GP had prescribed, called an ambulance, and returned to the hospital.

"I thought I was dying that night," said Dolores.

The hospital carried out a covid-19 test and a chest x-ray but didn't find anything.

The doctor asked Dolores about the patch on the back of her neck, whether she had been lying in the grass and about allergies.

"I was beginning to think even at that early stage to think like I'm talking here I'm telling people what's happening.

“I was beginning to think at that early stage I'm not being believed here," said Dolores.

The doctor also asked Dolores about stress and panic attacks, but to be sure, they admitted her for the night and performed more allergy tests. Dolores was discharged the next day.

In the weeks that followed, Dolores said she continued to have symptoms including rashes, unresponsive episodes and memory loss.

She experienced heightened senses, and she said her personality changed.

When her eyes began to give her problems, Dolores visited an optician.

"It was there that the optician suggested when I told her that it might be Lyme disease," said Dolores.
The optician wrote a letter to Dolores's doctor.

Lyme Disease

According to the HSE website, Lymes disease is an infection caused by the bite of a tick carrying the Borrelia bacteria.

The tick is usually acquired from grassy areas or from animals like deer or sheep, most often in summer or autumn.

The risk of developing the disease is low if the tick is removed within 36 hours of the bite.

However, if someone does have Lyme disease, early antibiotic treatment is required to prevent long-term consequences.

Symptoms include flu-like illness, headache, sore throat, neck stiffness, fever, muscle aches and fatigue.

Long term complications can include musculoskeletal, neurological, skin and cardiac symptoms.

On the optician's advice, Dolores visited a Lyme disease specialist. Dolores said her doctor asked her about a list of approximately 70-80 symptoms, which she says she had all.

However, her test for Lyme disease was negative.

Dolores says she was treated with antibiotics but six weeks after her first symptoms began.

The specialist referred her for various tests, including iron, CT, and MRI, but all came back normal. She was sent to an infectious disease specialist in Dublin who thought it was migraine or covid-19.

Dolores is disappointed in her care in Ireland but has heard about a test in Germany, but it is expensive and outside of Dolore's means.

Additionally, her GP did not agree it was a good idea.

"I said this to my doctor on the phone. I had a consultation with him on the phone, and he was fairly adamant, and he said it in a loud voice that he would not recognise that," said Dolores.

He told her her symptoms would clear within six months.

Almost two years later
Twenty-one months, five A&E visits and several doctors later, Dolores is no closer to a diagnosis. She says her eyes have worsened.

Her optician recently recommended she go to the hospital, where they found an infection in her eyes, cataracts and a freckle at the base of her eye.

However, Dolores is generally disillusioned with the medical care she currently has access to.

"I can't go to a hospital because they don't believe me and don't want to worry my partner.
“I felt so alone and so scared when I lost minutes not being aware of what I'm saying or doing, not being able to remember where I parked the car; not remembering my dreams,"said Dolores.

Dolores has made complaints to both the hospital and ombudsman but says she is not happy with the outcome, and the matter is now closed.

She says some of her medical team, her optician, nurses and physiotherapist have been helpful.

However, she says others have not told her not to attend the A&E anymore and to "cop on", making her feel guilty for asking for help.

She says doctors have made many suggestions from epilepsy to menopause and even relationship stress.

Dolores says her family has been supportive, but it can be challenging for all involved two years on.

She says many of her symptoms are invisible, making it difficult for others around her to understand.
"For some people, if something is not visible, then it doesn't exist. And I guess that sums up my whole experience; it has been my biggest stumbling block," said Dolores.

Dolores says the symptoms she experiences have profoundly affected her and her family.

"Before this happened, I was a very laid back person, nothing bothered me, extremely independent person, now I get frustrated and constantly worry considering almost two years on still no diagnosis, but it's the lack of interest from the medical profession (except those I mentioned above) in getting an answer for me that has had the most profound effect on my mental health," said Dolores.

Nenagh Castle closed due to weather conditions

Council advice to Tipperary property owners on hedge cutting

Permission to cut hedges etc ends on March 1

Tipperary plant operator loses case to have machines returned by gardaí