Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697636889472.pdf (Australia)
For Lyme Disease Awareness and Action Senate Inquiry Submission My Story 41 years  Name:  Age:  Address:  You can contact me on:  I want my story to be public but my name to be withheld on the web My Illness            I acquired my Lyme Disease or Lyme-like illness locally at Bonnie Vale NSW 2230 in the Royal National Park in January 2011.

I was bitten by a tick on my right shin.

I was sick for 2 years before being diagnosed with Lyme Disease.
I have been sick for 5 years since being bitten.

I have positive blood and urine tests from Australian Biologics and Igenex USA.

I have tested positive for Borrelia, Bartonella Henselae and Babesia Duncani.

I have had low CD-57 counts.

I have had SPECT CT scans which have showed reduced perfusion in my brain.

I have seen over 20 different doctors, specialists and health practitioners since being bitten in 2011, totalling hundreds and hundreds of individual appointments.
I have been admitted to hospital twice for my illness and have been in emergency many times.

I have also been diagnosed with Chronic Fatigue Syndrome, Anxiety, Depression, Neuropathic Pain and Pyrroles Disorder.

My Journey   Prior to my illness I was happily raising my two boys with my husband, enjoying the many activities that young busy boys liked, like bike riding, camping, kayaking, swimming and playing at the park.

I enjoyed caring for my family and helping my boys achieve well at school.
I became very ill in 2011 shortly after being bitten by a tick and developing a typical Erythema Migrans (Bull’s Eye rash) at the bite site.

I went from doctor to doctor and had test after test to try and work out what was causing my symptoms of severe joint and muscle pain, fevers, night sweats, extreme fatigue, paralysis, hearing and vision issues, nausea, gut issues, forgetfulness, burning painful feet, twitching muscles, other neurological issues and severe headaches.
I was unable to care for myself, let alone my family.

I struggled to shower and had to rest for hours after washing my hair.

I could barely walk to the letterbox and couldn’t stand for long on my feet.

At one point, when I had a stroke-like episode a year into my illness, I was unable to even remember my boys names.

Our family life dramatically changed and it was a huge struggle for me to have clean school uniforms for my boys to wear and a healthy meal on the table of an evening.
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 154  My local GP tried hard to find what was wrong with me but didn’t know where else to  turn as the specialists (Dermatologist, Neurologist, Psychiatrist and a Rheumatologist) that he'd sent me to, along with the hospital had no answers.

I was tested for numerous diseases including cancer and Aids.
It was finally suggested by a Dermatologist that I had had a spider bite that had become infected but the pathlogy that they did on the site was inconclusive.

 About a year into my illness, I was semi paralysed, could barely sit up or walk and was in excruciating pain throughout my whole body.

I went to Emergency at Sutherland Hospital NSW but they sent me home as they could not find anything medically wrong with me with the tests they did.
They acknowledged that something was terribly wrong but they didn’t know what it was and that they couldn’t do any more for me.

I told them about the EM (Bull’s eye rash) that was still on my leg and I told them that I had been sick since being bitten by something.

The EM rash wasn't as bright as it had been, but it was still there.

They suggested that I may have Multiple Sclerosis and sent me home.

I thought I was going to die.


My children would ask each day if I was going to die that day while they were at school.

I was obviously seriously sick that even my children could tell.

I was then referred to a private Neurologist who insisted that I was just sensitive and that I didn’t have MS.

He was also very confident to say that Lyme Disease didn’t exist in Australia when we questioned him about it.
He then referred me to a psychiatrist and a rheumatologist without doing any tests of his own, even though I had just experienced a stroke-like episode and had been referred to him for nerve conductive testing.

He was apparently a well respected member of staff at      Public Hospital NSW but I felt he was quick to dismiss me once I mentioned Lyme Disease.

I felt unheard and dismissed.


I kept searching as I knew I was sick with something and I finally found an image of a Bull’s Eye rash on the internet and recognised it as the same as mine.

I found a GP Doctor in Laurieton, 6 hours from where I lived, who was willing to test me for Lyme Disease.

I had tests done at Australian Biologics and Ignex USA.

I tested positive for Borrelia, Bartonella Henselae and Babesia Duncani.
Australian testing for Bartonella with accredited laboratories failed to show that I had it although overseas testing which is more sensitive showed that I had it.

I began long term oral antibiotic treatment under his guidance, two full years after first being bitten.

It was great to finally be diagnosed but unfortunately the bacteria had had time to spread throughout my whole body and I was battling late stage Lyme Disease or Neuroborrelliosis along with coinfections.
Had I been diagnosed when I first presented to my GP or Dermatolgist or hospital with the EM rash and given appropriate antibiotics straight away, I wouldn't have gotten this sick nor needed such long term antibiotics.

I have since been under two more different Lyme Literate Medical Doctors in Australia.

My first doctor suffered medical issues of his own and my second doctor was unable to provide IV treatment for me when oral antibiotics weren't enough.
He feared harassment from other medical doctors who keep denying Lyme Disease or a Lyme-like illness and don’t believe in treatment.

 My local GP supports my decision to do this treatment but doesn’t believe in Lyme Disease or a Lyme-like illness yet.

He is very interested though that I am beginning to get well.

Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 154     I have been on treatment for nearly three years.
I now have a PICC line and am on long term daily IV antibiotics, along with oral antibiotics, which are strong enough to start treating the neurological symptoms of my illness.

I am starting to have some good days where I can walk short distances, read a book, cook my family a meal, hang out the washing and take my boys to a movie.

I still have many bad days where I am fatigued, forgetful, in pain, not able to walk very far and have seizures.
Some of these symptoms are due to the die off of the bacteria which is known as a herxheimer reaction.

Many organs and systems in my body have been effected by the bacteria but slowly, I am getting better with long term IV antibiotic treatment.

I also take many supplements, up to 60 capsules per day, to help my body continue to function and keep fighting after much damage from the bacteria.

Lyme Disease has impacted my life in so many ways along with my husband’s life, my boys lives and my friends.
I have lost so many things in my life that I enjoyed and I have little energy for the basics let alone socialising.

This is a very lonely and isolating disease.

 Financially, it has cost a lot of money to get diagnosed and to treat it.

We have gone without in order to pay medical bills and to pay for medications.

  My husband also has Lyme Disease and it is believed he may have contracted it from me.

This complicates our family life even more with two parents unwell.
I urge the government to listen, support and protect the Doctors who are treating us with Lyme Disease or a Lyme-like illness and who are helping us to get well and regain our lives.

They understand this disease and how to treat it more than the doctors who keep denying that it doesn't exists in Australia and have little idea of what life is really like living with this disease and who refuse to treat it.

Lyme Disease is treatable and if caught early it is treated much easier.
  Please educate GP's about EM rashes and the public about the dangers of tick bites.

 Please stop the debate over blood testing facilities and start looking at realities of this disease because it does not discriminate.

Single, married, child or adult, male or female, this disease can infect the healthiest outdoor loving person and change their life forever.
I have lost many years with my family that I can never regain due to a medical system that is in a debate over whether something exists in Australia or not and looking for proof rather than working on how to treat a real disease, whatever it is called and wherever it is caught.

If I contracted another infectious disease overseas, I would not be denied treatment here in Australia.

I ask, why is it different for any of these bacterias and parasites?
 Please listen to us who are living with Lyme Disease or a Lyme-like illness.

There is something making many Australian people sick with the same symptoms after being infected with Borrelia, Bartonella, Babesia, Rickettsia etc, usually after the bite of a tick, mosquito or leach, whether it be here in Australia or overseas, and the Australian Medical community needs to hear the facts and wake up to the epidemic that is happening right before their eyes.
I am so grateful for the few brave Australian Doctors who are diagnosing and treating this horrible and debilitating disease and giving us the chance to live again.

    Please help us.

Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 154 Thank you for hearing my story, Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 154