Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697636835122.pdf (Australia)
Senate Inquiry Submission: Lyme Disease Awareness and Action My Story Name: Age: My address is: DOB: My postal address is: (same as above) You can contact me on: I have no objections for my story to be made public.

About my journey I acquired Lyme-like illness at Urunga, NSW 2455 in 1989.

I left Australia in 1984 for four weeks in the middle of a European Winter.

Type of Bite: Tick bite.

I was sick for: 27 years before being diagnosed.


I have positive blood tests from Arminlabs, Augsburg, Germany on 22/07/2015.

I tested positive for: Borrelia Burgdorferi, Chlamydia pneumonia, Coxsackie virus, Epstein Bar virus, Barmah Forest virus I have seen nine doctors and three medical practitioners in my journey.

I have been admitted to hospital once for pleurisy.
I have also been diagnosed with strange rashes, poly arthritis, oesophagus problems, fatigue, headaches, Bells Palsy on the left, rheumatoid arthritis like illness, alpha gal mammalian red meat allergy, collapsed weak legs and hands, carpal tunnel syndrome, focal hand dystonia in both hands, bowel problems, Apo E ¾ genotype, joint pain, muscle pain, electrical shocks going through the body, sharp shooting pains, acute pleurisy, sleep disturbances, memory problems (hard to think and function), MRI demonstrated punctuate white matter lesions in the brain, Post Traumatic Stress Disorder.
My Life Prior to my illness, my life was normal and happy.

I was born in Belgium, and was educated at the Academy of Arts in Antwerp, where I graduated with the highest degree as Scientific Illustrator and Graphic Designer.

In 1981 I immigrated with my husband to Australia.

We lived in Sydney for 2 years, and I worked as a Scientific Illustrator.
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 636 In 1982 our first child, a daughter was born.

We moved to North Queensland for my husband’s work.

In 1985 our second child, a son was born.

Due to our daughter coming of school age, my husband and I decided to settle on the Mid-North Coast of NSW.

In 1988 our second son was born, and we were looking forward to raising our children in a healthy harmonious family environment.
However, in 1989 while I was still breast-feeding our second son, I was bitten by a tick.

I had a rash, went to the hospital and they told me I had food poisoning.

Slowly all my joints started to swell up.

I went to a doctor who advised to keep an eye on it.

When the fluid went out of the joints they cracked on bending, and were very painful.

I had terrible headaches, felt very weak, and could not stand properly on my legs which collapsed, while we still looked after the three children.
Also, I could not feel if water was hot or cold, and my children had to tell me.

I would drop things.

A friend told me about Lyme disease, and I went to the doctor, and he retorted that Lyme disease did not exist in Australia.

He referred me to a rheumatologist, and I was directed to take medicine for rheumatoid arthritis.

These medicines gave me problems in the oesophagus.

I felt tired and was in a lot of pain.

It was depressing not knowing what was wrong with me.
We had this beautiful little family, and I was not able to function as I wished.

I went to various natural practitioners; nothing really helped in the long run.

Approximately two years later I was bitten by another tick.

I fell down, and my husband had to carry me.

Next day I went to a doctor, who told me I had a Lyme-like disease, but he couldn’t prove it.

He treated me with antibiotics for some weeks and I felt better.

After a month or so, all the symptoms returned, even worse.
Ultimately my hands and arms became numb, and slowly over the years things got worse.

I could no longer work as even normal household requirements became too much.

The symptoms gradually increased, I lost my independence.

I was operated on for carpel tunnel, which made no difference.

I had neck and sinus problems after that.

Then I went to a psychologist for help—where else could I turn?

Next another doctor sent me to a neurosurgeon and an MRI of my brain and neck was taken.
Looking at the lesions in my brain, this professional asked me if I had Lyme-like disease.

On the written report, he stated that I had focal hand dystonia in both hands.

The neurosurgeon also wrote that I had disc generation in the neck, and I was treated with injections for this, which gave no relief.

A possible operation was suggested which could leave me paralysed.

I said not yet.

My hands began to shake if I attempted a task.


So I was given anti-Parkinson’s medication, which was ceased as it did not help.

I was sent by the doctor to a physio; she tried hand exercises specially designed for focal hand dystonia.

Every time I did the exercise the symptoms, cramping and pain and numbness and shooting pains, got worse.

After 25 years I went to another doctor, who treated me with antibiotics.
Without mentioning names, there have been doctors who were respectful and understanding of my condition.

However I could feel that their hands were tied because of the current rhetoric surrounding Lyme-like disease.

After all these years my physical health deteriorated and my mental health suffered enormously.

In 2015 my husband and I went to Europe, and I had my blood tested at Arminlabs in Augsburg, Germany.
The results came back positive for Borrelia Burgdorferi, the Lyme Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 636 disease bacteria, Chlamydia pneumonia, Coxsackie virus, Epstein Barr virus, Barmah Forest virus.

When the Belgian doctor, who deals with Lyme disease and other chronic illnesses, read my blood report, she said “It's amazing you are still alive.” It was such a relief to be believed.
They could not start the treatment immediately.

I had to wait and build up my immune system for 7 weeks before I could commence the treatment.

I had to go on a strict diet: dairy and gluten free, no sugar or sugary fruits, no carbohydrates, no alcohol, no coffee and tea only herbal.

I was informed that the Lyme bacteria thrive on sugars.

This diet will be for the rest of my life.

They told me that I will probably never get rid of the Lyme disease, because I have had it for so long.
But if I stick with the diet, pace myself and don’t overdo things I can still have a life.

With regards to my career: With the second tick bite, my career stopped.

I have no superannuation and I lost my independence, but I can count my blessings that I have a very supportive family and an understanding circle of friends.

This is a short review recounting the personal cost Lyme has inflicted on me and my family.
However, when evaluating the social and economic cost of the misconception that Lyme does not exist in Australia one would soon find that the price tag on my inability to contribute in the workforce and 27 years of ‘professional’ interventions to attempt to make me better, is gigantic.

It is time that Lyme is recognised as a disease that can be contracted in an Australian environment and that, when immediately treated, can prevent such personal and social costs from occurring.
Yours Faithfully Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 636