Lyme disease is a bacterial infection generally caused by a bite from an infected tick
Karin O’Shea, from Kilgarvan in Kerry, suffers from Lyme disease, a bacterial infection generally caused by a bite from an infected tick.
Since January this year she has needed a wheelchair to get around but has bravely declared: "I was wheeled into this clinic in Bavaria but I will walk back out on my own two feet.’’
She revealed: "I was diagnosed with Lyme disease in April 2021. If it's not treated early, the infection can spread to your joints, heart, nervous system and brain. Unfortunately the disease has now had a devastating effect on me.
"My disease went undiagnosed here for 12 years. I was told I had Fibromyalgia and I managed these symptoms. I lived a normal life and when I did get flare ups, we were not aware that there was any progressive damage being done. I fought through these symptoms and learned to manage it.
"However, in October 2020, I severely deteriorated. My current GP went above and beyond in terms of finding out what was happening to me.
"The symptoms at that time included excruciating nerve pain all over my body, a headache and pressure in my skull that never goes away for me.
"It affected my nervous system. I've had short term memory loss, episodes of body paralyses and tremors which include slurred speech, fainting, loss of balance and then there was extreme exhaustion, insomnia and nausea.
"We exhausted every avenue But, we had no answers, so I sent my bloods to Germany to test for Lyme disease, which cost almost 1000 euro. The results came back positive. They also showed chronic immune suppression. I actually was tested in Ireland years ago for Lyme disease but it came back negative.
"The tests available in Ireland test for antibodies and my immune system was so suppressed that I wasn’t producing any. The tests in Germany are far more sensitive. I also never got a bullseyes rash, which I have learned is quite common, around 50% of people don’t get the rash at all.
"When I got the diagnosis, it all made sense. I grew up in the countryside, I have had many many tick bites as a child. We were just not aware of the dangers.
"My GP referred me to Dr. Lambert an Infectious Disease Specialist in the Mater Hospital, Dublin.
"He is the only specialist dealing with Lyme disease in this country. I was on a treatment plan of up to five antibiotics a day for several months. Unfortunately, this was unsuccessful due to late diagnosis. This treatment also came with severe side effects. This is the only available treatment in Ireland."
Karin's problem was compounded by the fact that as it took so long for her to be diagnosed the antibiotics she was on were less effective.
She said: "According to the HSE, Lyme can be treated with a course of antibiotics. However, the undiagnosed and late diagnosed are left stranded and have no options available here. There has been over 63 million euros spent on chronic Lyme sufferers from Ireland getting treatment abroad since 2012. That figure speaks for itself.
"I have endured 12 years of suffering, pain, fatigue and fainting. I learned to manage it during the earlier years until it got progressive.
"However, It has robbed me of the last two years of my life. Every symptom you can think of. I lost the use of my legs towards the end and it really affected my brain and nervous system.
"I went from being a Geography and Religion teacher with a normal life to being completely housebound and immobile, dependant on my partner and family to do almost everything for me.
"The physical as well as mental pain that I have endured during these times is nowhere near normal. I have been simply trying to just survive every day.
"Now I am in St George’s Clinic, Bad Aibling, Bavaria, Germany which is the most popular clinic for Lyme sufferers worldwide and is also more affordable than similar treatment in the United States.
"I have been here since March 2 and the regime is fairly gruelling but successful.
"The main procedure is hyperthermia where they heat the body in an ICU unit for a period of 6 hours, it is essentially an induced fever. At a temperature of over 41 degrees Celsius (they got me to 41.8) the Lyme bacteria can no longer survive. During this procedure, they also pump you with IV infusions, antibiotics and you have a tube down your throat extracting toxins.
"The after effects were excruciating. It was something I could have never prepared myself for, pain, nausea, weakness. However after the second procedure during week two I regained mobility in my legs and my cognition, memory, and speech all drastically improved.
"The main difference for me personally and which was quite a shock due to what I was used to in Ireland, was the level of care and understanding of my condition here in Germany and the severity of it if left untreated.
"The German doctors have commented on the severity of physical condition and stated that I have a long road ahead of me to get my health back due to how long I have had this disease. It is nothing short of miraculous what they have done for me in the space of a couple of weeks here. I am beyond grateful and optimistic again.
"Looking back it has been really difficult. I suppose I got used to it for a while until it overtook me.
"I always struggled with my health and tried so hard to deny it was failing me and tried to tough it out. I remember one day in class, my eyesight began to go blurry and I had awful pain.
"I knew something was drastically wrong but due to being told I was fine, I felt like I had to keep going, and wanted to keep going. It is hard to face your own reality.
"My partner, AJ Christian found me collapsed that evening after work. The staff at the school I worked in, St Brendan’s College, Killarney, Co. Kerry were so understanding and nothing short of amazing. Their support meant so much to me and took great pressure off.
"I have no idea when I will be able to return to work however I look forward to when that day comes.
"AJ took it in his stride, made me feel as normal as possible, and supported me every step of the way. All of this support has been crucial and kept my head above water and helped me catch a grip and keep fighting throughout it all.
"The HSE claim that a course of antibiotics treat Lyme, simple as. Well I am proof that it doesn’t certainly not if you are a long term sufferer.
"Chronic cases, undiagnosed cases are left stranded and no answers provided for the thousands of people here.
"According to Dr Lambert, there are 2,500 to 3,000 cases of Lyme a year in Ireland however the HSE are only conceding a fraction of this.
"The doctors in Germany have said I have a long way to go due to the severity of my case and how it affected my nervous system and brain. However I will walk out of here, I was wheeled in but I am certain I will walk out."
The HSE said it does not comment on individual cases.