Lyme Disease Senate Inquiry Submission

Transcription

1 Lyme Disease Senate Inquiry Submission Name: Age: Withheld years I acquired my Lyme disease outside of Australia in January 2010 when I travelled to Malaysia and Thailand. The type of bite is unknown. I tested positive for Lyme in 2014 when I received blood test results from IGeneX in the USA and Australian laboratories. The blood tests revealed that I had Borrelia and two co-infections: Bartonella and Babesia I also passed the Australian Lyme questionnaire. I have seen the following number of Medical Practitioners and Naturopaths 1. General Practitioner Gold Coast (GC) 2. Holistic Doctor - GC 3. Naturopath - GC 4. A GP in New York, USA 5. Another GP in New York, 6. Holistic Dr - GC 7. Holistic Dr - Sydney 8. Holistic Dr - Melbourne present 9. Total Body Modification (TBM) therapist Melbourne - present 10. Holistic Dr - GC - present I have also been diagnosed with Chronic Fatigue, Adrenal Fatigue, Hashimoto's Disease, and Fibro Myalgia, which are known Lyme associated illnesses. Lyme Disease Senate Inquiry Submission 1

2 My Life I contracted my illness in 2010, my fourth year of university at QUT. I was studying a double degree of a Bachelor of Fine Arts Fashion Design and a Bachelor of Business, with a major in Marketing. Entry to the Fashion course was by interview and practical assignment together with presentation of a portfolio work. Acceptance into the course is highly sought after with only 10 students accepted into the double degree. I was doing very well in both my degrees and looking forward to designing, sewing and presenting my final fashion collection at the end of the year and then graduating. I travelled to Malaysia and Thailand with friends in January 2010 arriving home in early February. I was fully vaccinated for a trip to Asia including Hepatitus A (Havrix 1440 PFS)and Typhoid Fever. I have been very energetic and well throughout my whole life and this continued during this holiday. On my return I was well for short time before coming down with a severe cold. After the regular cold symptoms subsided I was left feeling very tired. This tiredness became chronic over the next few weeks until by June 2010 when I had deteriorated so much I found it difficult to get out of bed. I would drag myself to university only to be too tired once I got there that I had to return home. I was so tired that I had trouble thinking and could not understand why I was struggling with assignments and work that I had done easily and well in previous years. I saw a GP who ran some tests and told me on the 6 September 2010 (date on a medical certificate) that I had chronic fatigue and that she couldn t do anything to help me. She provided no suggestions or treatment options. I made the decision to continue to the end of the year with my cohort despite the fact that I had to commute from the Gold Coast to Brisbane and was feeling totally exhausted and mentally blocked, but I had to defer the remainder of my business degree. As mentioned above the fourth year of this course is very demanding with a final collection to be showcased in November. I had a difficult first semester designing, illustrating and drafting the patterns for my collection which I completed despite feeling completely creatively and mentally blocked, as well as physically incapable. The thought of starting over the next year was too much too bear. I had already left my part time job at David Jones in and had to work from home as much as possible. I started seeing a holistic Doctor on the Gold Coast in September. After undergoing a saliva test she determined I had adrenal fatigue and commenced a series of intravenous Vitamin C and Multi Nutrient therapy. I continued receiving this therapy each week for ten weeks, which gave me mild short-term relief for two or three days. I completed my Fashion Design Degree on time with the assistance of my mum, who took carer s leave to help me to seek out and use professional dressmakers (rather than make the collection pieces myself as I would ve had I been well) and assist me in fulfilling all the various tasks to complete my collection. I submitted multiple Medical Certificates to QUT during the last semester of 2010 to cover my absenteeism from formal classes, and despite being so unwell I was never granted any concessions or special consideration. I believe that Lyme Disease Senate Inquiry Submission 2

3 had I known that I had Lyme, and had Lyme been properly recognized this would have been different. At the beginning of 2011 I started seeing a naturopath who treated me for adrenal fatigue with supplements and I improved to a point where I was able to finish my business degree. I then arranged a fashion internship in Sydney commencing in July. I was marginally better due to being under the care of this naturopath who changed my treatment to support my adrenal fatigue. I managed my three (3) month internship and life in Sydney and maintained my treatment. Believing that I was better (though realizing in hindsight that I was still terribly unwell), I was determined to move to New York to undertake a fashion internship and did so in March I managed my fatigue while overseas and I successfully completed two different internships, but my health began to worsen in the latter part of the year. Additionally in September I started getting a bad pain in my lower left abdomen. This pain became unrelenting and I sought the help of two separate doctors who could not identify what was causing the pain. My pain and fatigue were affecting my ability to work and look after myself. As a result I was forced to cut my time in New York short and left in October I returned to the Gold Coast where I saw a new holistic doctor who diagnosed me with Hashimotos Thyroiditis in addition to the adrenal fatigue. In 2013 I moved back to Sydney where I lived with my partner. My health declined steadily and I had my worst year, unable to leave the house due to the pain and fatigue. I was so exhausted and unwell that I was unable to think through the brain fog and identify all my symptoms. During this time I had ongoing investigations into my unknown pain such as numerous lower body ultrasounds, upper and lower body CT scans, bowel disbyosis tests and a laparoscopy. All had inconclusive results and I was left in agony and unable to stand or walk far. I felt embarrassed and ashamed that I was unable to work and see my friends, and had no real explanation for my poor health. The holistic doctor I was seeing during 2013 in Sydney offered me various treatments with no effect. I was diagnosed with fibromyalgia and had regular acupuncture, which did not alleviate my symptoms. I also introduced strict diet changes such as FODMAPS and the elimination of gluten, dairy and sugar from my diet. Towards the end of the year the Sydney doctor had me tested for Lyme through an Australian Labratory. The results were positive, yet the doctor did not offer any variation on my treatment and had appeared to have given up on me. Then my partner was offered a job in so at the beginning of 2014 we moved to and I sought new medical help. I found this in a Lyme-literate holistic doctor who had me re-tested for Lyme and co-infections through the American laboratory IgenX. My tests came back positive for Lyme and two co-infections. I began treatment with Byron White formulas and Nutritional X and began improving. I also began treatment with a Total Body Modification (TBM) therapist (kinesiologist) who managed to completely eliminate the pain in my lower left side after a year and a half of Lyme Disease Senate Inquiry Submission 3

4 suffering it everyday. With the pain gone and my fatigue and brain fog lifting I started part time work. Through these improvements I gained self awareness and was able to more clearly identify my symptoms, such as digestive issues, different types of headaches, neurological issues, anxiety, eye problems, loss of hair and the list goes on. I was able to cope with work for about three months after which I found it too much and had to cut down to maximum of two days per week. I was able to maintain this for the remainder of In 2015 I went down hill again and had to stop working to concentrate on my health full time. I continued with the Byron White formulas in addition to extensive supplements, cholestyramine, and essential oils. I also tried antibiotics (Doxy) for a short time. In January of this year (2016) I went to the Gold Coast for Hyperthermia treatment under the care of another Lyme literate holistic doctor. I had 7 treatments that each involved two hours in the hyperthermia machine followed by intravenous Vitamin C treatment. I also started on the trial for Mac 98 Alive formulated by Professor Reynolds of Griffith University. I saw some improvement from the hyperthermia treatments, particularly experiencing relief from my fibromyalgia symptoms, so I was keen to continue and had 5 more treatments in March. I am not expecting an immediate recovery from these treatments, but hold high hopes for I also hope to try Bee Venom, which is used successfully overseas for treating a range of illnesses including Lyme. From my story you can see I have sought help from numerous doctors and alternative therapists for a long list of serious symptoms that all link back to Lyme disease. I believe that had Lyme disease been diagnosed in 2010 I would have been able to recover and be living a normal and healthier life now. It is also very frustrating that despite most likely contracting Lyme overseas, I have been denied a speedy diagnoses and treatments because the authorities don't believe that Australian ticks carry the Lyme bacteria. I find this ridiculous because Australians are known to be frequent world travelers and could pick up Lyme from any continent. Although I have fulfilled the requirements of three internships and worked in the retail fashion sector, I have not been able to work full time in the last five years or fulfill my career ambitions. I have undergone many different therapies and treatments, including a laparoscopy for the mysterious lower abdominal pain that couldn t be identified. Each therapy has contributed to my understanding of the extent of harm inflicted by the borrelia bacteria, but it has not eradicated it, or made me well again. I have not been able to pursue the career I ve worked to achieve during my high school years (being the recipient of both of the year twelve Art and Textile Course awards) and by finishing my university degrees. Having Lyme has affected my ability to develop my career, work as a professional, earn an income and be financially independent. It has made me dependent on my family and my partner. I was under my parents private health benefit fund until I was 25, and have been on my partner s since then. It has also essentially altered who I am by changing me from a bubbly, confident and social person to one who seldom has the mental or physical capability for social interaction. Lyme Disease Senate Inquiry Submission 4

5 I am grateful to still have my movement, but I tick almost every box on the Lyme symptom checklist. This is the list of therapies I have undertaken to date: 1. Intravenous Vitamin C and Multi Nutrient therapy 2. Adrenal supplements 3. Melatonin supplements 4. Extensive Vitamin and mineral supplements 5. Thyroid supplements (for Hashimoto s Disease) 6. Strict dietary restrictions 7. Chinese medicine 8. Herbal medicine 9. Byron White formulas for Lyme Disease and co-infections (including chronic fatigue and detox formulas) 10. Essential oil therapy 11. Chiropractic therapy 12. Acupuncture 13. Doxacillian antibiotics 14. Total Body Modification (advanced kinesiology) 15. Hyperthermia therapy together with Vitamin C intravenous therapy Lyme Disease Senate Inquiry Submission 5