Coast couple highlight the plight of Lyme disease sufferers
THERE is a "silent epidemic" affecting people across the nation, Sunshine Coast medical scientist Kate Killeen says.
The Bli Bli woman and her partner, Dave Bielefeld, are two of those people suffering from the controversial Lyme disease.
Ms Killeen and Mr Bielefeld, a couple for more than five years, were diagnosed six months ago but had been suffering from Lyme disease symptoms for a few years.
The disease is not recognised by the Australian government and medical fraternity, but more and more cases across the nation are being diagnosed by US and European testing companies.
Ms Killeen has seen more than her fair share of doctors - an endocrinologist, gastroenterologist, general surgeon, two psychiatrists, three cardiologists, two neurologists and five GPs.
One GP even tried to admit Ms Killeen into a psych ward, convinced her symptoms were only in her head.
What's your take on Lyme disease
This poll ended on 08 March 2016.
I'm inclined to agree with the trained doctors.
I'm not sure but something must be happening.
Doctors need to acknowledge it as soon as possible.
There needs to be an inquiry into why it's not recognised here.
This is not a scientific poll. The results reflect only the opinions of those who chose to participate.
Finally the 30-year-old and her fiance found a Sydney-based doctor with expertise in Lyme disease and got specialised treatment to help improve their health.
Unfortunately they will never be 100% healthy again as there is no known cure for Lyme disease. The bacteria can lie dormant, making treatment very difficult. It is impossible to know if you have eradicated the bacteria.
As Ms Killeen is unable to fly or drive, the pair has their doctor's appointments via Skype each month.
"I can't fly as the noise could bring on a seizure," she said.
"Anything can cause a seizure - noise, fatigue, even eating. According to our doctor you can live with a low bacterial load, but you can have relapses. Just like cancer, you have relapses and you can go into remission. When you get (the bacteria) down to the 20% load, the immune system can maintain it and we are able to maintain a normal life."
In October 2012, while the couple was living in Emerald, they knew they needed to find out what was wrong with them.
"I had vertigo, dizziness, brain fog and fatigue," Ms Killeen said.
By July 2013, Ms Killeen was experiencing seizures and a range of other symptoms, including neurological issues and others affecting her nervous, heart, digestive and endocrine systems.
Mr Bielefeld's symptoms come in the form of joint and muscle pain and extreme fatigue.
Due to their failing health the couple was forced to relocate back to the Coast and move in with Mr Bielefeld's parents.
"We had to be closer to the hospital in case of a heart attack or stroke," Ms Killeen said. "People think it is all in your head - and actually, yes, it is, it is literally in your head and your joints, organs, tissues, nerves, muscles and cells.
"It causes a lot of isolation because you are not able to do things that other people can do and people have difficulty understanding why you can't go out to dinner, why you can't walk around the shops.
"All the little things people take for granted can become a massive challenge to a Lyme sufferer."
Since diagnosis, the pair has spent $16,000 on treatment. Before diagnosis they spent more than $20,000 on medical tests and doctors.
"The bills don't stop when you get sick," Mr Bielefeld said.
Ms Killeen added: "We are quite fortunate compared to other sufferers. My father pays all our medical bills and Dave's parents look after us.
"I hear of many sufferers who suffer severe financial difficulty and loss."
Despite their poor health, the couple have recently become engaged and are hopeful of a brighter future.
"We don't know how we got it," Mr Bielefeld said.
"We don't know if we got it from the flood in Emerald and do not recall tick bites or classic bulls eye rash.
"Treatment is different from person to person."
Ms Killeen said: "We were planning on having a baby two years ago, but this disease ruined that dream for us for now.
"Having a child is a massive risk as the disease can be passed on to the child from the placenta.
"We had a strong relationship before this and it has made us stronger."
Both Mr Bielefeld and Ms Killeen want more research and funding to go into examining Lyme disease in Australia.
"Like anyone, we only want help, we want recognition this disease is here and the discrimination to stop," Ms Killeen said.
"Getting a diagnosis and treatment for a disease should not have to be so difficult. Doctors need to lose this ignorance and arrogance that Lyme disease doesn't exist and start educating themselves in learning the symptoms and how to treat them.
"The government needs to accept Lyme is here."
What is Lyme disease?
Research suggests Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged tick.
Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migraines.
If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods.
Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat.
The ticks that transmit Lyme disease can occasionally transmit other tick-borne diseases as well.
For more information visit http://www.lymedisease.org.au or the Karl McManus foundation.