My Story
• Name: Daniel Larking
• Age: 41
• My address (postal and residential) is:
• You can contact me on:
(my mobile however I am unable to answer calls on my own due to
neurological impacts)
• I want my story to be very public
About my journey
• I acquired Lyme-like illness at: Melbourne VIC
• I have travelled extensively around the world.
• Type of Bite: Unknown – definitely have never been bitten by a tick or had any ring
marks
• I was sick for 2.5 years before I was diagnosed.
• I have positive blood tests from Deutsches Chroniker Labor in Germany (via
Seegarten Klinik in Switzerland)
• I tested positive for [list of diseases].
• I have seen 8-10 of doctors and medical practitioners in my journey.
• I have not been admitted to hospital for my illness however due to the neurological
symptoms have had a number of falls for which I have been to hospital for (broken
jaw etc).
• I was first diagnosed with Motor Neuron Disease (ALS) however due to my relentless
search to find an answer, finally got a Lyme Disease diagnosis. Due to this very late
diagnosis, it is clear it has caused some sort of Motor Neuron Disease as I have
severe neurological impacts. When I was first diagnosed with ALS, I consulted my
neurologist requesting a lyme disease test. She dismissed this saying Lyme disease
does not exist in Australia. She finally referred me to get a test however failed to
disclose my correct result saying it was negative. 3 years later, I requested these
results for my records and the Australian result were positive (currently seeking legal
advice for malpractice).
• Access to my superannuation and Total and Permanent Disability is a work in
progress.
My life
• Prior to my illness, my life was one of fitness and outdoor activities. I have travelled
extensively and was an avid mountain climber – have climbed mountains all over the
world including Matterhorn, Mont Blanc, Himalayan mountains, Kilimanjaro to name
a few. I was also an experiences skier and snowboarder, runner, mountain biker,
swimmer – I loved the outdoors and was very independent. I also always had a full
time job – working on many large financial institution projects across the world as a
programme manager.
• In December 2011, I noticed a twitch in my left bicep which wouldn’t stop. After
several months, I saw a doctor who referred me to a neurologist. Several tests later,
I was diagnosed with Motor Neuron Disease in September 2012. This was the most
devastating thing to hear – they told me I was going to die and at best had 3 – 5
years left. The most difficult part of this diagnosis was that it is by exclusion – there
is no positive test for MND/ALS. It’s all about disproving it is something else. I
immediately started investigating online what other medical reasons could be
causing my symptoms and saw several things which I had not been tested for. Two
of particular interest was Lyme Disease and heavy metal poisoning. On my next
consultation with the neurologist, I quizzed her on both of these and asked for tests.
For both, she said it was impossible to cause my symptoms and Lyme Disease in
particular, was not in Australia (even though I made her well aware of my extensive
travels). I insisted she refer me for a test (I went for a blood test immediately
afterwards). Several weeks later, I went to the Neurologist and she confirmed the
results were negative and proceeded to talk about ‘end of life’ preparations. By then,
I only had symptoms in my left arm and refused to believe what she was saying… I
never saw her again. Two months later I climbed a mountain in the Himalayas… and
three months after that, a mountain in Russia.
By July 2013, I knew my symptoms were progressing. Muscle atrophy in both my left
arm and hands and weakness. Twitching was slowly moving to my chest and right
arm. Around this time, I had been put into contact with a company based out of
Switzerland called Natural Biosciences. They had successfully treated a number of
MND patients by administrating stem cell therapy. The aim was to stop progression
of the disease using their methods and gradually rebuild the muscle that had lost. In
October 2013, my partner and I travelled to Switzerland for this. Up until January
2015, we had gone back at least half a dozen times for more stem cell therapy. The
doctors were not sure why their treatment was not being as effective as it has with
other patients. By this stage, I was in a wheelchair, not being able to walk without
assistance. Had lost ability to lift and use my arms and hands meaning I could not
feed myself or look after myself without full assistance. My speech had also been
impacted with increased slurring. I also stopped working in July 2014 because my
symptoms were so bad, it was a risk being at work, having fallen a few times and my
ability to work effectively was being affected (not being able to type, walk easily to
meetings etc).
Towards the end of 2014, my partner and I spent some time on the internet
searching again for any new developments. We kept coming up with Lyme Disease
and read many articles of Australia missing the Lyme disease diagnosis. When we
travelled to the clinic in Switzerland in January 2015, I asked to get tested for Lyme
disease. Ironically, a different department to the clinic treated Lyme disease and is
one of the few in Switzerland. 4 weeks after returning back to Australia, we received
an email confirming it was Lyme Disease – and that it was so ingrained in my muscles
that from their experience, I have had it for at least 10 years. They said that if I had
treatment for this earlier, I would not have the symptoms I have today. Both a
devastating thing to hear but the answer we were looking for. A few weeks later, I
travelled to Switzerland for 6 weeks intensive treatment. While there on my first
day, the Lyme specialist looked at my partner and said that we need to get her
tested – in every case they have, the partner also tests positive because it is
transmitted through sexual intercourse. Of course it would – it’s a bacteria. Yet no
one talks about this. She too tested positive and it is almost certain that I was the
one who passed it to her. While we were over there, Krystle also received
treatment.
My treatment included 10 hyperthermia sessions where my body up heated up to
over 41 degrees whilst being administered a number of antibiotics including
Doxycycline, Metronidazole and countless infusions of high dose vitamin C, alkaline
infusions to name a few. As Krystle’s readings were lower, she only had 8 sessions
and 4 weeks worth of antibiotics.
We came back to Australia and sought rehabilitation through hospital. The
swiss doctor said that once the bacteria was eliminated, the stem cell therapy would
kick in so I had to start intensive rehab as soon as possible. was a horrible
experience. I was promised 2 weeks intensive rehabilitation however they refused
to recognise the Lyme diagnosis – they repeatedly said they had to respect the
Australian diagnosis of MND. Their belief was for MND you had to conserve energy
(which is the complete opposite to what the medical professionals say in
Switzerland). I was left in tears many times while I was at the hospital because I
know what was needed yet I kept coming up against a brick wall. As the Australian
medical industry does not recognise that I may recover from this, I have had to
source professionals privately to help me with my rehabilitation at home. I
currently have Pilates 4 days a week and myotherapy once a week. Both trainers
have been amazing and truly believe that I will get through this – they push me hard
in my rehabilitation which is exactly what I need. I have noticed some slight
improvements with increased grip in my hands and have started to gain a little bit of
weight. I will continue with stem cell therapy for repair but my deterioration has
virtually stopped since receiving the Lyme disease treatment. The clinic in
Switzerland have started testing their ALS patients for Lyme disease (they are not a
diagnosing clinic and treat patients based on diagnosis elsewhere). However due to
Daniel’s findings, they are starting to see a strong correlation between ALS patients
and Lyme disease – what they are now saying is that it is one of the causes of
MND/ALS. It could be a precursor. However treatment may be the key to stop the
progression. When we last spoke to the clinic last, 3 out of 4 ALS patients tested
positive for Lyme disease.
Altogether, my partner and I have spent over $300,000 of our own life savings for
treatment and private rehabilitation. We have never received any help from anyone
and are trying very hard to do this all on our own. We know that we could never get
the support we needed through the Australian medical industry – all we would get is
support to help me die… access to a nursing home or palliative care. I will prove
them wrong.
I had originally sought legal advice for the incorrect negative result for Lyme disease
back in early 2013 (via my Australian neurologist). The legal firm had requested I
get all copies of my medical records. I started this process in October 2015 and the
Lyme result was the most difficult for them to track down. I then received a copy in
the mail from the neurologists receptionist and to my horror, it said the result was
positive. The result was initialled by the neurologist… i.e. she had seen it, yet she
told me it was negative. This has now changed the focus for my legal team.
This disease has destroyed my life – going from someone so fit, healthy, loving life to
being completely incapacitated and needing full support. The emotional torment is
devastating and something you can never imagine. Being trapped in a body that
cannot move like it used to and being completely aware is impossible to come to
terms with. This is devastating for my partner and also our families. You could
never comprehend what this is like. I am very bitter towards the Australian medical
industry, its lack of recognition of this disease, support for me and my family, its
failure to be world leading as it claims to be for so many things and am completely
ashamed of our medical industry.
