Lyme disease keeps Kelly’s woman locked up in her house

Sometimes scary, she recalls her condition (misdiagnosed as fibromyalgia at age 14) as “easy to manage.” “It just became a part of my life,” she said.

“It has always been a constant struggle, but at least it was manageable and I was able to live with it almost.”

But then she “crashed” in October 2020, and her health suddenly went downhill completely suddenly. Due to the illness, she abandoned her educational work at St. Brendan University in Killarney, Kerry “indefinitely” and shut herself up in her home.

One day she was so terrible that she couldn’t eat herself or even get out of bed. And until she was diagnosed with Lyme disease (after sending her blood sample to a German clinic), her life was a “living nightmare.”

Lyme disease is usually characterized by the appearance of a rash, but she never developed a rash. She remembers she was always bitten by ticks as a kid after spending hours in her parents’ yard at her home in the countryside of Kilgarban, but no one is in danger. I didn’t think.

Karin is talking to promote today’s Lyme Disease Awareness Day. This is the beginning of a month-long awareness campaign by patients and their supporters.

Earlier this year, she was talked about not only for the amount of money she collected from the GoFundMe page, but also for her two dramatic “before and after” photos that appeared with the appeal.

One was taken before the recent Lyme disease-related health “crash”, showing that she in her early twenties is a woman with a vibrant smile and a healthy look.

But while she was robbed of her in the suffering of the effects of a debilitating illness, her eyes sank into her pale, moody face, and she was barely recognizable.

Her case was taken up in February by Maura Healy Ray, a friend and councilor of the Kelly County Council who helped raise her awareness and support.

At that time, at the St. George’s Clinic in Germany, treatment of this disease caused by bacteria that were bitten by infected ticks and spread to humans was the only option open to Karin.

The cost of intensive care was € 40,000. It did not include travel, post-treatment care, and further appointments. This could be at least twice as much as the € 45,000 she requested on GoFundMe.

Her plight attracted more than 1,800 support within a few days of her appeal, and she managed to raise € 76,765.

“I’m not lucky to have this illness because it has had a dramatic and serious impact on my life,” says a 26-year-old elementary school teacher from his home in Kilgarvan, Kerry. “But I was fortunate to be able to raise money so that I could receive treatment abroad.

The sad fact of life in Ireland is that many other people can’t be treated because they can’t raise money or are so ill that they can do little or no for them.

Karin is one of many people who are forced to travel abroad each year to receive medical treatment. In fact, patients with chronic Lyme disease are estimated to have paid up to about € 63 million to receive treatment abroad in the last 12 years.

In countries such as Poland, the United States and Germany, almost everyone was forced to borrow a bank or credit union loan to raise tens of thousands of people for treatment. This is because their condition is so chronic that the treatments available here do not work and they have to go abroad.

Professor Jack Lambert, one of Ireland’s leading Lyme disease experts, asserts that he significantly underestimates the prevalence of the disease and the health problems associated with other infections infected by tick bites. doing.

He is a professor of medicine and infectious diseases at Mater Misericordiae University Hospital and UCD School of Medicine in Dublin, as well as a director of Mater’s High Infectious Disease Isolation Unit and a member of the National Viral Hemorrhagic Fever. HSE committee.

Professor Lambert is also the Chief Councilor of the Lime Resource Center, whose mission is to promote education and treatment of Lyme disease and related tick-borne infections.

He condemns the treatment of illness in Ireland and believes that more should be done to help patients in this country.

He points out, for example, that veterinarians are better at both testing and treating various infectious diseases that can be transmitted from ticks to animals than GPs.

“We don’t have a complete picture of the Irish problem because we aren’t tracking it,” he said.

“Health services will probably say that there are hundreds to 300 cases each year.

“However, many studies are being conducted, including those in Limerick, and it is estimated that up to 2,500 cases of Lyme disease occur annually.”

In addition to the lack of knowledge about how common the disease is, there are other infections associated with ticks.

He states: “What is not noticeable to people is that mites carry anything other than Lyme disease.

“There are other bacteria in the foreground of mites, and there is little or no knowledge or understanding of other infections spread by mites.

“That said, veterinarians have been studying this.

“They treat all of these various infections in animals caused by ticks.

“But in humans, these other infections carried by ticks are not well recognized or even tested.

It is absolutely true that animals are inspected and inspected more regularly by veterinarians than humans.

According to Health Minister Stephen Donnelly, “Irish residents do not have to travel to other countries to diagnose or treat Lyme disease.”

Such a statement made on his behalf in a letter from his private secretary to the Kelly County Council on March 22 is flying in the face of the experience of many Lyme disease patients.

However, it is also one of the HSEs that previously accepted that the true incidence of early Lyme disease in Ireland is unknown and that there is a “underestimation of true disease levels”.

HSE states that there are two medical service schemes that offer reimbursement to people treated abroad, noting:

“Only treatments provided or funded by HSE for the treatment of Lyme disease are eligible for a refund.”

Currently, treatment here revolves around a two-week course of antibiotics.

However, as Professor Lambert points out, Ireland may have a way to treat Lyme disease, which is not suitable for a large number of patients.

He states: “Most Irish consultants say they’ve been cured after two weeks of antibiotics.

“But studies show that less than 50% of people are cured with antibiotics for two weeks, but the party line is for two weeks. That’s it.

“Strangely, if you have pneumonia, it’s not getting better, and you’ve been taking antibiotics for two weeks, you’ll get more antibiotics.”

Ann Maher, who runs Lyme Chat-Eire, a support and advocacy group for more than 630 Lyme patients in Ireland, works with Tick Talk Ireland from 11:00 am to 2:30 pm today.

“We want to get more recognition from the social welfare of medical professionals and those who are ill and unable to work,” she said.

“We are trying everything to raise awareness. We feel that we have been just hitting our heads against the wall of indifference for years.

“The problem is much bigger than health services accept.”

Rock of Cashel will be lit green on Sunday night to commemorate Lyme Disease Awareness Day, and Dublin’s Mansion House will be lit green on May 12. This is part of a month-long attempt to raise awareness.

“Even if even a few county councils could issue warning notices to public parks, we would make a difference. That’s what we’re trying to do this month.”

Karin has four words to describe her appearance before starting treatment in Germany. “I was a zombie.”

She now says the treatment gave her a second debt.

“I hadn’t been treated, so I felt rotten at home,” she said.

“Yes, I’m very lucky to be given a second chance.

“I feel sorry for the chronic patient who has never had a chance and has crossed the path of never returning.

“The only good thing from my experience is that people pay attention to what’s going on.”