Irish mother-of-two in Germany receiving treatment for Lyme disease
Published 06/05/2016 | 13:21
A 40-year-old mother-of-two has travelled to Germany for intensive treatment of a chronic disease which has rendered her in excruciating pain and unable to walk for long periods.
Martina Kelly (40) from Stamullen, Co Meath, suffers from chronic Lyme disease, which has left her with a litany of symptoms including extreme fatigue, severe joint pain, and chills.
Speaking to independent.ie from Germany, the physical therapist says it took 18 months of going through a litany of tests and visiting countless doctors and specialist before she could get a diagnosis.
“It just kept getting missed. I was getting misdiagnosed with ME and fibromyalgia and things like that. I was a road biker and mountain biker, played volleyball, went to the gym, I was so active. I was a busy mum, running around with the kids, going to sports club with the kids, never sick in my life and then all of a sudden it was like a switch.”
Martina now remembers the day she was bitten by a tick, after which her symptoms slowly started to appear in September 2014.
“We had cycled up Lugnaquilla and we came back down and we were eaten alive. I remember the next day the children were laughing. I had 21 bites on my arms, but I didn’t really think any more about it.”
“Within a week or so, it started manifesting with sore throats, exhaustion and not restful sleep. Some days I was struggling to get through my appointments [with clients].”
“It was getting worse and worse. Eventually I went to the GP and did loads of bloods. All my lymph sites and neutrophils were chronically low.”
Her GP suspected that it was a virus but Martina’s symptoms failed to improve.
“For me to go to a GP appointment it would take seven or ten days to recover from it, it would have to be a good day to get down the stairs - even to make a cup of tea. I could spend the day wrapped in an electric blanket literally to get my temperature up, I couldn’t be touched, couldn’t speak properly. I would use a cane and a wheelchair to go out. My heart rate could be at 160 beats a minute.”
“I’m a really positive person. The only time I would get down was because of the pain. My heart rate could be 150 beats a minute just sitting washing my teeth, and I had been so active. I had patients with fibromyialgia so I knew what I had was nothing like it.”
“I would have hats, scarves, blankets while sitting in the sun,” Martina added.
In early December, Martina took the Lyme ELISA test but the results came back as negative.
“It’s very inaccurate, it doesn’t test for certain antibodies. I think it’s about 30pc accurate.”
“The test came back negative. The GP said himself that he was testing me for the weird and the wonderful, AIDS, cancer, everything, you name it.”
“But the lymphocytes were still dangerously low. The GP kept giving me steroids, pain medications, and anti-inflammatories.”
Eventually, Martina said she was forced to look outside Ireland to get a diagnosis.
“I decided to go to a lab in Germany and find out, did I have lyme, and if I had a co-infection, then what co-infection did I have?”
“I was able to get a positive diagnosis. I had multiple co-infections. Then through the doctor that owns the lab, he sent me to a specialist of lyme and borelia, and co-infections.”
The tests showed that Martina had chronic Lyme disease and ten co-infections. She is now receiving six infusions a day of antibiotics and antibacterial medication.
“I also have neuroborreliosis. It’s in my brain so all of my nervous system has been affected.”
Martina is now in her third week of treatment, and treatment could take up to six more weeks.
“The treatment is very intensive, specialised, controlled. In Germany it’s €2,500 for ten days. It’s a bottomless pit. I’ll need to get infared therapies, oxygen therapy, and all these kind of things when go home.”
“At the moment, it’s recovery and being able to get to some sort of normal life. Being able to shower and not be in pain for days afterwards. It’s such a long road.”
Martina says the treatment for Lyme disease is not adequate in Ireland.
“It’s quite ironic that the HSE has released the statement in the last couple of days.”
“There is no treatment in Ireland. There is no doctor that specialises in Lyme disease. If you don’t get the specific treatment for you, the longer it’s in your body, the more problems it can create.”
If you would like to make a donation, you can visit www.gofundme.com/martinakellyjersey or: sort code 90 35 41, account number 7230 5719.
In a response to independent.ie the HSE said: “In the US, a frequently-quoted figure as to the accuracy of the Lyme ELISA (or enzyme-linked immunosorbent assay – a test that measures the presence of antibodies – proteins that assist the body’s immune system to identify and destroy bacteria and viruses - to Borrelia burgdorferi, the bacterium that causes Lyme disease) is about 65pc. This figure is not accurate.”
“Only half the patients with early Lyme disease will have a positive ELISA test,” a spokesperson said.
“Current best advice is that the diagnosis of LB should be made only after careful evaluation of the patient's clinical history, physical findings, laboratory evidence and exposure risk.”
The HSE spokesperson said ELISA tests used in Europe and North America can give “false-positive” results.
“Although, the ELISA tests used in Europe (including Ireland) and North America are specific and very sensitive (i.e. when they are used properly, almost everyone with Lyme disease will test positive for the disease) , they are not absolutely so, giving false-positive reactions in the presence of other spirochaetal infections such as syphilis, and certain viral infections including glandular fever.”
The HSE said the number of annual neuroborreliosis notifications over the last few years is as follows:
· 2012 – 8 cases
· 2013 – 13 cases
· 2014 – 18 cases
· 2015 – 12 cases
The HSE says this gives an average annual incidence rate of neuroborreliosis in Ireland of about 2.7 neuroborreliosis cases per million population.