25/02/2016

Committee Secretary Senate Standing Committee on Community Affairsx PO Box 6100 Parliament House Canberra, ACT 2600

Email: [email protected]

RE: Inquiry into an emerging tick borne disease that causes Lyme- like illness

Please accept my submission into the above Senate inquiry

• Name: Linda Epton • Age: • My address is: • My postal address is: [same as above] • You can contact me on: • Email: • I want my story to be public (although please do not publish my contact details)

I am one of the few sufferers in that presented to a local GP with all of the signs and Symptoms of both Rickettsia and Lyme Disease following known Tick Bites.

The inability of the medical profession to diagnose, or even to accept that I had Tick Borne Diseases, has resulted in that I now suffer from debilitating Chronic illness that could have been avoided had I been treated at the onset.

Apart from the arrogance and ignorance on the Doctors part, The Australian Health Authorities have a lot to answer for, as it is they that informed the GP’s that such diseases don’t exist in Australia.

When I was referred to an Infectious Disease Specialist in October 2013, he told me that he ”didn’t believe that Borrelia is in Australia, and that my signs and symptoms can be attributed to so many other conditions. He went on to say that No doubt I have a comprehensive systemic (something or other) and an Auto Immune disease. Quite often the doctors are unable to pinpoint a cause for the symptoms then the treatment is, Exercise, Diet, Rehabilitation, Psychology, Cognitive Behaviour Therapy etc. I asked him that "Had I been bitten while living in Denmark, and all of my ensuing symptoms had occurred subsequently in Denmark, What would he then be looking at He answered, Borrelia Q: So I said, the fact that It all occurred in Australia?? A: "We are looking for something unrelated to Borrelia, maybe you have a reaction to a protein in the tick bites etc."

This attitude is what is destroying so many lives in Australia and contributing to devastating chronic illness that otherwise could have been avoided. Our Doctors need to be educated to be able to recognise the signs and symptoms of Tick Borne diseases and treat accordingly in a timely manner.

1 • I acquired Lyme-like illness at: WA in the summer of 2010/2011 I acquired the Rickesttsial diseases in the early summer of 2006 • I have left Australia in 1973 and returned in 1987 • Type of Bite: Ticks, Multiple over 12 years every summer (As well as March Fly Bites) • I was sick for 6 years before I was diagnosed with Rickettsia, and 2 years after contracting the Bulls Eye Rash, I was diagnosed with Borreliosis and other co infections • I have positive blood tests from The Rickettsial Reference Laboratory, Western Diagnostics Pathology and Perth Pathology • I tested positive for: Rickettsial Group R. Australis (Queensland Tick ) R. Honei (Flinders Island ) R. Conorii (Mediterranean Spotted Fecver) R. Africae () R. Rickettsial (Rocky Mountain Spotted Fever

Clamydia Pneumoniae Longbeachae

• Clinical diagnosis of Lyme Like Disease due to the presence of a Bullseye Rash at the time of bite and related ongoing clinical signs and symptoms

• I have seen 5 doctors and medical practitioners in my journey relating to the Lyme Like symptoms and 4 Specialists as a result of organ and arterial damage. • I have been admitted to hospital 5 times for my illness and related issues. • I have also been diagnosed with Chronic Fatigue Syndrome, Auto-immune Disease, Multiple Systemic Infectious Disease, Comprehensive Systemic Inflammatory disease

My life

• Prior to my illness, my life was very active, I was an active member of my community, performing volunteer work and a respected Yoga Teacher.

• From 2000 to 2012, I was subjected to multiple tick bites every summer. I live on a 5 acre block and had/have very close contact with kangaroos and other wildlife. I was also an avid gardener. In 2006, one of the tick bites turned into what I describe as a Volcano. I now know it is called an Eschar. - Within days I felt like I had the flu, then a week later I awoke with a rash on my torso, front and back and was experiencing drenching sweats and feeling very unwell I went to a local GP who told me that I had an “:Allergy” and prescribed Phenergan. I asked him at that time, whether my rash could be due to the Tick Bites, I actually had many bites on my legs and arms at the time, He told me that “NO, we don’t have Tick Bite Diseases in Australia” At this time I had never heard of Rickettsia, Borrelia, , Babesia or Lyme disease, and did not even know how to protect myself from the tick bites, and just assumed it was part and parcel of living in the bush.

I became sicker over the next couple of weeks and finally saw another GP that prescribed 2 me antibiotics for my massive chest infection.

From then on I suffered ongoing bouts of infections, muscle, back and joint pain and feelings of being very unwell, until 2009 when I was finally diagnosed with a stenosis of the Left Renal Artery and consequently had that artery stented.

• In the summer of 2010 and 2011 a tick bite turned into what I would describe as a Dart Board. The outer circle was a little bigger than a 50cent piece and it had two inner rings. Initially my current GP gave me cortisone cream and a week later diagnosed the rash as a Ringworm. Of course the Ringworm treatment did nothing to heal the rash and I became very ill, first with flu symptoms, then aching in the joints and tissues and legs muscles and deep exhaustion. I had pain in the back of the neck, and Teeth, to the point that I went to the Dentist and demanded to have my teeth extracted (thankfully he refused and ordered a scan instead that found a blocked sinus above my upper teeth) I had pain in the Sinuses, Headaches, chest infections, ongoing cough, very deep exhaustion to the point of barely being able to walk from the kitchen to the clothes line. All this time I was studying and I noticed that I began to have trouble concentrating and remembering facts, I had what I call Brain Fog, Insomnia and also my personality changed and I became irritable. I also had ongoing headaches and finally my GP sent me for a scan, - found that the sinuses on one side of my face were swollen and attributed the headaches to the swollen sinuses. He advised that I seek out a Chinese or Indian Doctor as the only remedy with an ENT specialist was surgical scraping which I refused to have done. To cut a long story short, I travelled to the mountains in Southern India, where I was treated at an Ayurvedic Hospital for 7 weeks, It was here that the Indian Doctors told me that I had Rickettsia and other Tick Borne Diseases, but to be treated for those, I would need to remain another 6 months, this I was unable to do, I couldn’t afford 700 euro a week anyway

• On my return to Perth in February 2012, I told my GP what the Indian Doctors had diagnosed, I was tested for Rickettsia, which came back positive and was prescribed antibiotics

Several months later, my weight suddenly increased by 8 kilo in one month, I was put on a 500 calorie diet for 4 weeks and gained an additional 5 kg. I was then sent to see another Doctor in Perth who diagnosed me with Lyme Disease and gave a suggestion for treatment. My initial GP was shocked, did some research and began treating me first with high doses of IV Vitamin C. Initially I began to feel a little better, but was unable to continue the treatment due to the cost I was then referred to a treatment called the Cowden Protocol, but unfortunately was unable to complete the course due to being prescribed Clopidogel following Coronary Artery 3 Stenting. The main bio film buster in the Cowden Protocol is incompatible with the Clopidogrel which I must now take to prevent clotting in the arteries and stents.

I have subsequently had the Left Renal Artery re-stented and recently had the Right Renal Artery stented.

The body weight continued to increase and now I weigh 20 kilo more than I did in Feb. 2012 I had and still have a long list of symptoms that you will read from other submissions, so I am only listing a couple here. I now experience recurring drenching night sweats, and burning soles of the feet every morning. I am unable to hold down lengthy conversations without getting Breathless and I often experience” Air Hunger” Both Meniscus in both knees have spontaneously ruptured, Ligaments and tendons in the knees, shoulder and hip are inflamed, my legs often give way under me and I suffer from a constant exhaustion and pain so debilitating that I am unable to practice as a Yoga Teacher anymore. Due to the breathlessness, I am unable to even talk a class through. Having spent over $20,000 and many years studying as a Yoga Teacher and gaining an Advanced Diploma in Holistic Yoga Studies, I am deeply saddened that I am unable to work at all.

• I implore the Commission to recommend training to all Medical Professionals in the recognition and initial treatments of all patients presenting with the signs and symptoms of Tick Borne Pathogens.

Once these diseases have become chronic, there is no curing them.

Although I contracted Rickettsia in 2006, recent blood tests done in 2014 are still showing positive for the above listed Rickettsial pathogens even though I have been treated with countless courses of antibiotics since 2006.

There are treatments to be had that can assist with day to day living for a lot of us, but they are so very expensive and they need to be continued on a regular basis. One such treatment cost me $300 a week, (three treatments a week) and while on that I was able to walk for about a kilometre each day, but when I reduced the frequency of the treatments due to the cost, I am no longer able to walk more than 200 meters without resting.

• I am available at any time for further information if required,

Thank you for considering my submission, I have tried to keep it as short as possible.

Kind regards

Linda Epton 4