Lyme-Like Disease (It is not called Lyme Disease in Australia) is an infectious illness caused by a bacteria called Borrelia which is transmitted when an individual is bitten by a tick.
Our Graphic Designer Sally Joyce was first ‘diagnosed’ in May 2018, but was first struck down with the disease aged 30 in 2001.
She said: “The hardest thing is the disease doesn’t exist in the medical world so it is hard to get treatment that doesn’t cost a fortune.
“A GP can not treat or diagnose Lyme Disease and even if they believe it is a Lyme-like illness they are not equipped to treat the disease only the symptoms.
“Over the last 20 years I have seen every specialist in every field available, from medical to natural and back again.
“My diagnosis eventually, through a process of elimination, was Fibromyalgia and Chronic Fatigue Syndrome.
“There is no treatment for either so I had strict diets and expensive herbal treatments and I would get a bit better but then relapse again.
“Mum was the driving force behind never giving up and finding a cause for my symptoms. I couldn’t fend for myself and had to go back and live with Mum and Dad. But they were amazing.
Mum had to go to every appointment with me because I couldn’t comprehend what the doctors were saying in the early days. I had so much brain fog and short term memory loss. I couldn’t even relay to them my symptoms.
“Eventually mum found an Integrative (holistic) doctor who she really wanted me to see. He was the one who diagnosed me with Lyme and Ross River and also some of the co-infections.
“Testing for Lyme was my doctor’s last resort and it was not done in Australia because it didn’t, and still doesn’t, exist according to the medical board, despite so many people living with it in Australia who have never travelled overseas.
“I had to send my blood to Germany and it cost a fortune. It is a really difficult disease to test for because the bacteria hides.
“My day-to-day symptoms were debilitating fatigue (at the initial onset of chronic fatigue I spend all day and all night in bed for 3 months), muscle and joint stiffness and whole body pain, general unwell feeling, brain fog, short term memory issues and then when I would get the virus symptoms with the sweats, aching pain (worse), head pain, muscle weakness.
“Everything I do has a consequence, so I have learned to live with it and be mindful of what I do each and every day. However, the longer the bacteria stays active in my body the more damage it does, and I’m having a lot of issues with my joints and prolapse discs seem to be a common symptom amongst ‘Lymies”.
The best thing for people to do is join the facebook group Lyme Australia and Friends, or the website to get information on where to get help.
If someone gets bitten by a tick and/or gets the bullseye rash (not everyone gets this) and they get treatment in initial stages, it can be stopped in its tracks.
“The lack of recognition of the lives that are affected by this disease that still ‘doesn’t exist’ in Australia is the most frustrating, plus the lack of research into cures and the fact that people living with this disease don’t have the means or money to get the help that is available.
“I think if there was recognition of the disease in this country then there could be a cure eventually, but I’ve lived with it for 20 years and it took 18 years before I was diagnosed.
“In the last two years that I have been diagnosed I am still unable to get any treatment or recognition from my medical professional.
“A cure is a long way off in my view.”