Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1694818888420.pdf (Australia)
Senate Inquiry Submission Name: Age: Address: Postal Address: As above Contact number: I want my story to by public but with my name withheld.

Summary:     I am a 44 year old female born in Australia with Dutch national parents.

No known history of tick bites.

Prior to becoming ill I lead an extremely busy and full life; working 50-60 hour work weeks in a professional role, playing sports, exercising regularly, running the City to Surf, completing two 3- 4 day treks in New Zealand.
I have travelled extensively through Europe, the USA and Canada, India, Nepal and New Zealand between 1979 and 2011  Was diagnosed with borrelia and yersinia in 2014 via in Germany.

Clinical diagnosis of chronic fatigue, chlamydia pneumonia, bartonella and babesia, also in 2014.
Both of my children have been diagnosed with borrelia and/or coinfections  My husband was diagnosed with borrelia and co infections in 2013   My mother-in-law was diagnosed with borrelia and coinfections in 2015  My mother was diagnosed with fibromyalgia and chronic fatigue in 2001   Relatively healthy as a child and teenager.
Some allergies and recurring tonsillitis I believe some of my lyme symptoms began appearing as early as young adulthood, after starting a relationship with my to-be husband  More relatively minor symptoms appeared leading up to my first successful pregnancy  Two successful pregnancies, four failed pregnancies (one ectopic, one triploid foetus, one “missed” miscarriage, one “normal” miscarriage)  More obvious lyme and co symptoms appeared after my first child was born i.e.
unexplained non-specific, non-infectious hepatitis, carpal-tunnel-like wrist issues, skin issues, insomnia, painful soles of feet, osteoarthritis in toes.

Additional lyme and co symptoms after my second successful pregnancy i.e.
urticaria x 3, more skin issues, worsening inflammation of brain and muscles, cognitive issues and worsening insomnia   My husband was diagnosed prior to me realising I was also infected, so my pathway to diagnosis was only as long as the wait time to get in to see an LLMD (8 months in my case).

Our GP, was initially extremely dismissive of Lyme, but was happy to keep treating our mysterious symptoms.
After almost 5 years, she now acknowledges the travesty of the Lyme debacle in Australia (after many, many sessions/discussions with my husband), but is no closer to being able to help in my treatment.

I have not been to hospital as a result of the illness.

I have not disclosed my diagnosis to any specialist or other doctor since being diagnosed, as I have witnessed first-hand the disgusting response from medical professionals to even the suggestion of Lyme Disease at appointments with my husband.
Extremely condescending and patronising across the board.

Ongoing symptoms which are managed by heavy daily detoxing and living a highly prioritised life with little room for actual “life”.
   Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 863 My journey Pre-diagnosis history: As a child I was generally healthy, although with recurring bouts of bacterial tonsillitis and a range of allergies (animal fur being the most significant and long lasting).

I was active and studied judo for 9 years, as well as swimming, tennis and other various sports.

In high school I was actively involved with music and drama.
I studied Chemical Engineering and have a Bachelor Degree in Engineering.

Since graduating, I have worked in various roles in a Process Engineering capacity.

Some have been highly stressful and demanding roles, which I enjoyed.

I have been married for 21 years and my husband and I have travelled extensively throughout Europe, Asia, New Zealand and the USA.

We also lived in Georgia, USA for 3 years between 2003 and 2006.
I lived an active life, working long hours and also exercising, socialising with friends and building two houses (complete with DIY painting, paving, landscaping and other fitouts), amongst many other things.

In hindsight, I believe that issues with bacterial infection probably started in my late teens.

I cannot confirm that these issues were bacteria related, but my recent experience implies that they may have been.

For example, at about 18 I started experiencing chronic restless leg syndrome.
This continued until about a year ago when I addressed my low magnesium levels.

I discovered in my early 20’s that if I took 2 grams of Vitamin C every day, I wouldn’t get cold sores.

If I didn’t have the Vitamin C I would get a cold sore within 1-2 days.

No one, including my GP and a naturopath could ever explain to me why Vit C had that effect on me.

In my mid 20’s I had an ongoing minor throat infection for about 18 months.

It eventually resolved when I started gargling antiseptic every day.
In my early 30’s I started to worry about my memory and brain fog.

I was having more and more trouble thinking clearly at work and I wasn’t able to remember things that I had done in my past or even more recently.

In 2000, at 29 years of age, I tried the herbal medicine pau d’arco for a minor health concern, but found that it produced significant suicidal thoughts with no underlying depression or apparent cause.
After a few weeks of use I stopped taking the medicine immediately when I realised the cause and was surprised that pau d’arco was not noted anywhere as having a side effect of suicidal thoughts, because it was undoubtedly the cause of the thoughts.

I now know that pau d’arco is a treatment for babesia, for which suicidal thoughts is a typical symptom.

After almost 4 years of trying to get pregnant I had a missed miscarriage at 34 years of age, which was removed surgically.
At 37 years and after a successful round of fertility (not IVF) treatment I gave birth to a healthy baby.

My pregnancy was very difficult, becoming high risk after abruption of the placenta early on and painful ligament issues resulting in my stopping work after at about 3 months.

The rest of the pregnancy was mostly spent lying down.

My obstetrician suggested that other patients who had reported the same ligament pain had found some relief with pilates.
While this did seem to help I was in too much discomfort to maintain a regular exercise routine.

I was induced at 37 and a half weeks due to increasing pain associated with my uterine ligaments.

When my daughter was about three months old I was diagnosed with hepatitis (non-specific, non- infectious).

After being seen by a specialist hepatologist, I was diagnosed, by exclusion, with fatty liver, despite the fact that an abdominal ultrasound showed almost no evidence of fatty liver.
However, as I was overweight and did not test positive for any of the specialist’s other go-to liver conditions, my hepatitis must have been due to fatty liver (according to the specialist).

Bacterial infections or toxin load was not considered in his evaluation.

My liver enzymes improved after I stopped breastfeeding, although they have fluctuated since.
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 863 When I was 38 I developed a significant carpal-tunnel-like problem in both wrists following successive days of digging around rocks in the garden.

I saw my GP, who was confused.

It was very much like carpal tunnel syndrome, but by definition could not be because all 5 fingers were involved on each hand.
She sent me to a specialist hand physiotherapist, who was also confused for the same reason and because all three nerves in each wrist were affected.

I was sent to a physiotherapist who specialised in back manipulation, as the hand physio suspected that the nerves were being trapped in my spinal area.

The second physio shrugged it off as being carpal tunnel syndrome as there was “nothing wrong with my back”.
Six years later I still have this issue, which occasionally causes me significant sleeping problems.

I manage it by wearing hand splints while I sleep and cannot sleep without them.

I am very conscious of my hand position when I am awake and have a very limited time that I can hold my wrists in anything other than a straight position.

This affects my ability to push a shopping trolley or pram, or ride a bike, and has reduced my wrist strength.
When I was 39 I became pregnant naturally, but the pregnancy was ectopic.

The pregnancy was terminated and one of my fallopian tubes was removed.

I started an IVF program and my first implant was unsuccessful.

I became pregnant with my second implant, but a miscarriage followed.

I then began seeing an acupuncturist/Chinese medicine doctor who specialised in liver function and fertility.
After a period of about 18 months I became pregnant again on my third IVF implant, but the foetus was a triploid and became another missed miscarriage.

This was also removed surgically.

My fourth IVF implant was successful and I gave birth to another girl at 41 years of age.

This was my 6th pregnancy and second child.

This pregnancy was also very difficult due to the same unusual ligament pain as my first successful pregnancy.
However, I was able to maintain a regular pilates program at home and with a physiotherapist, which helped reduce the pain considerably.

I was able to take care of our older child during the pregnancy until the pain again became unbearable at about 8 months.

This, coupled with a high pre-eclampsia risk resulted in a planned caesarean section at 37 and a half weeks.
My husband started his lyme journey around the same time as our second baby was born, having become extremely sick after a case of septicaemia following surgery in 2011.

He will submit his own story to the senate so I won’t elaborate with any detail.

However, he was at his worst leading up to and in the months after the birth of our second child.

He was unable to be at the hospital much with me, and could not look after our first child during this time.
Our very supportive parents helped as much as possible.

Despite this, I developed post-natal depression and my liver issues returned.

I also developed multiple types of urticaria, one which started while still at the maternity hospital and two other independent types in the following few weeks.

Two of them gradually dissipated within a year, while the first type is still with me.

I take multiple antihistamines daily to keep the debilitating itchiness at bay, after two and a half years.
Both of my children had significant silent reflux that required daily losec doses for around 12 months.

They were both extremely difficult babies who would either not go to sleep or not stay asleep.

I took my first child to and sent me off with a sympathetic “good luck with that”.

My second child also spent a day at but wouldn’t sleep for longer than 10 minutes.

We again got sent off with a sympathetic “you’ll just have to do your best”.

for a day-stay at 4 months.


They were unable to get her to sleep Needless to say, with my husband’s illness, my health issues, a young child and a difficult baby, the months after the second birth were extremely challenging.

I couldn’t understand why I was having so many health problems which seemed to be getting worse.
I couldn’t think clearly, had many skin issues, the soles of my feet were extremely sore (particularly in bed, often stopping me from sleeping) and I was often extremely stiff after being still for a while.

I had terrible insomnia, Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 863 frightening dreams, ongoing “carpal-tunnel” issues in my wrists, heart palpitations and high anxiety levels, amongst other things.
I did not have a regular GP until living in the USA in 2004 (age 32), as I had never had a cause for many doctor’s visits despite some of my ongoing minor issues.

Prior to and after having my first child my friends and I used to joke that we were the “that family” with all the weird conditions we would go to the doctor with.
A common comment from my GP was “oh, that’s interesting”, or “it looks like x, but I’ve never seen (it there/that many/etc)” or “your problem doesn’t seem to be because of any of the usual causes”.

I didn’t think much of it until I started to see more and more issues in the months after the birth of my second child.

At that point my husband and I started to joke that I might as well have Lyme Disease with all of the problems that I had.
Eventually, it dawned on us that Lyme Disease would explain a large part of my issues.

This conclusion lead to Lyme and co testing through borrelia and Yersinia.

My LLMD diagnosed me clinically in 2014 with bartonella and babesia also, as well as chronic fatigue syndrome.

in Germany, with positive tests for Post Diagnosis History: As my husband was still very unwell and unable to work, I returned to work part-time after 12 months maternity leave.
We had learned from my husband’s experience that treating the infections with antibiotics created an illness an order of magnitude worse than not treating (or so it seemed).

I was already trying to cope with chronic fatigue and chronic insomnia as well as work and care for two children, so I chose to hold off on treating with the prescribed medicines from my LLMD (name withheld).

Instead I began using olive leaf extract and some supplements to support my already stressed liver.
This treatment alone was enough to increase my symptoms and toxin levels significantly.

However, after about 12 months of this treatment, some of my worst ongoing symptoms abated.

I was able to sleep better and my irregular heartbeat, heart palpitations and air hunger stopped.

I still had significant cognitive issues, urticaria, stiffness, sore feet, carpal-tunnel-like issues and my liver function tests were out of spec.
Unfortunately, now I also had much higher levels of fatigue, which made functioning as essentially a sole parent to two small children extremely challenging.

I also found that I was now extremely intolerant to noise and, more disturbingly, my oldest daughter.
It was around the time that I was considering getting psychological treatment to help me improve my relationship with my then-6 year old, because I felt that I was going to ruin our previously close bond if I couldn’t overcome this intolerance, which I knew to be irrational.

It was also at this time that my fatigue levels were the worst and my family and I were becoming extremely concerned that I was going downhill too fast.
My husband strongly recommended I follow his detox protocol, which I had previously resisted because of the time involved (juicing, daily 1 hour FAR infrared saunas, supplementation with glutathione precursers, TMG and other herbals).

Within days of following the protocol, however, I was feeling significantly better.

Although my fatigue levels were still high, I was able to function as a mother and worker again.

All of the irrational intolerance to my daughter also disappeared.
I have maintained the detox protocol since then, despite the time commitment.

Since becoming ill, I have had to learn to prioritise my life, chores, activities, etc.

This has meant that only the must-haves are guaranteed.

Food for the family, kid’s educational requirements, health for all in the family and maintaining my job are priority 1.

Anything else has largely fallen off my radar.


House cleaning, friends (except very occasionally), family visits, socialising, basic things like getting Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 863 haircuts, buying clothes for the kids are all things that generally don’t happen until they become desperate.

My mother helps out a lot.


She does my washing and ironing, and buys clothes and miscellaneous things as the need arrives.

She also babysits a couple of times a month (on top of babysitting one day a week while I go to work) so I can take care of important things like paying bills, writing this submission etc.

Costs Associated with Illness The costs associated with my illness have not been as high as they could have been because I haven’t started full treatment with antibiotics.
I estimate that I have spent up to $5000 in supplements over the past 2 ½ years, and an additional $1000 in doctor’s visits.

Testing for lyme and co, including hair and faecal analysis have cost around $1800.

Being unable to work full time due to my illness and looking after an ill family full-time has reduced my salary by 40%.

Effect on Family and Friends This is the most difficult section to write.

The relationship I had with my husband has been severely affected.
We have both suffered from long periods of anxiety, intolerance (in turn related to fatigue, poor cognitive function and/or toxin overload), depression and the occasional bout of bartonella rage.

Although we support each other, we haven’t had time or energy to work through these issues.

The general vibe in our house is often one of intolerance.

I shudder to think what effect this is having on our two girls, although we try to shield them from this as much as possible.

They are generally happy.


My family and some friends have tried to understand the illness and our antagonism toward the medical community in general, but because there isn’t any official information which supports our position they struggle to accept what they hear repeatedly from us about how we feel.

In fact, I have twice been asked by close friends and family to seek psychological help because those close to me feel like I’ve been brainwashed.
Because we tend to keep to ourselves, many of our usual friends we no longer see.

A core group of friends have remained, although only one or two really seem to appreciate just how difficult our lives are.

Only one takes an active interest in our disease and I am extremely grateful to have her as a friend and the only person I can talk to.

My family help a great deal, not because they understand how we feel, but because they can see we are really struggling.
Growing evidence of an emerging tick-borne disease that causes a Lyme like illness for many Australian patientsSubmission 863