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Growing Evidence of an Emerging Tick-Borne Disease That Causes A

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Growing Evidence of an Emerging Tick-Borne Disease That Causes A For Lyme Disease Awareness and Action Senate Inquiry Submission My Story • Name: Sara Franzoni • Age: 31 • • • • I want my story to be public About my journey • I acquired Lyme-like illness at: Allansford VIC 3277 • I have left Australia. • Type of Bite: no memory of the bite • I was sick for 17 years before I was diagnosed • I have a positive blood test from Igenix laboratory and a negative blood test from Melbourne Pathology • I tested positive for Borrelia Burgdorferi, Pyrrole Disorder, Glandular Fever. • I have seen approximately 50 doctors and medical practitioners in my journey. • I have been admitted to hospital twice for my illness. • I have also been diagnosed with CFS, Glandular Fever, IBS, Adrenal Fatigue, Bilateral Carpal Tunnel, Leaky Gut, Pyrrole Disorder, Depression, Anxiety, Q Fever, Rickettsia. My life • Prior to my illness, my life was unburdened, free and energetic. I was diagnosed at 14, so I was just a kid – but I still remember feeling different in my body prior to experiencing the illness. I would wake every morning excited and with so much energy for the day. I felt light, and I ‘buzzed’. I was naturally athletic and played a lot of sports. I grew up in the country in a dairy farming area. When I first started showing symptoms at age 14 (1998) most doctors in the area simply did not know how to treat me. I had blood tests (particularly for glandular fever) that showed nothing. At first I was told it was post- viral fatigue syndrome. Then when the symptoms continued for 6 months we finally saw another doctor in Warrnambool who diagnosed me with CFS. At that time I was lucky to have a very empathetic GP who knew about these symptoms. My symptoms included chronic headaches every day, extreme fatigue, heavy limbs, brain fog, slow reactions/responses, lack of good sleep/insomnia, depression, anxiety and a feeling of faintness every time I stood up. I also had a swollen lymph node on the back of my neck, which was cut out by the same GP who diagnosed me with CFS. I also tried many additional alternative health options, including chiropractic, naturopathy, changing diet, supplementation etc. Most things I tried would help a little bit, then would ‘plateau’. Often it was a case of two steps forward to improving my symptoms, then one step back. It was incredibly frustrating for a teenager who was previously very active, and this continued for 2 years. I experienced much emotional turmoil during that time, and finally I came to what seemed like the crushing conclusion that no one could help me except myself. By the time I got to VCE I had markedly improved in my health, until I experienced the stress of year 12 exams. I got very ill and had ulcers on my throat. I took a blood test and it showed positive for having had Glandular Fever. After recovering from that bout of illness, I learnt as best I could how to ‘manage’ my symptoms, and how to imitate being ‘well’. I recognise that I was a ‘fortunate sufferer’ to even be able to do this, and that for many sufferers of Lyme disease the debilitation can be absolutely immobilising. For the most part, I just tried to ‘fake it until I made it’, without really getting to the crux of the issue. I had understood the diagnoses of CFS and having had Glandular Fever at ‘some stage’ as something I just had to deal with on my own. They felt enigmatic and intangible, especially since my overall experience with doctors and practitioners was that there was very little that they or I could do about it. I moved to Melbourne to go to university, and at times I would live almost symptom free, or at least had gotten so used to brain fog, anxiety, stress, depression and feeling heavy in the body that I thought it was ‘normal’. Then, slowly, in my early 20s other symptoms began to creep in. I experienced chronic voice loss for a time, and ended up with nodules on my vocal chords. I managed to overcome the nodules through speech therapy and retraining my voice. Then at 23 I started to experience incredible, sharp pains in my stomach, any time I ate anything. I ended up in the hospital twice, the doctors and nurses confused as to what it was and sent me home. I went to several GPs to investigate my digestive issues and was met with very dismissive responses, especially once my tests for coeliac’s disease came back negative. I went on to seek alternative therapies, including Ayurvedic and Traditional Chinese Medicine. One practitioner even asked if I had been in a car accident because of the way I responded when he touched my stomach. My treatment this time was herbs and an elimination diet. Eventually the pains subsided after I decided to cut out gluten in my diet anyway, despite GPs saying it was fine for me to eat it. However the digestive issues, particularly bloating, continued for years. At 28 I was diagnosed with moderate to severe depression, though I had experienced ongoing bouts of depression since being ill as a teenager. I also had gone to another naturopath who suspected thyroid issues and adrenal fatigue, but nothing definitive came up. By the time I was 30, I was diagnosed with bilateral carpal tunnel, and spent about 3 months in splints. Finally, 2015 began to reveal some very tangible answers, things that I really felt I could do something about. After a coincidental conversation with a lady I met, she recommended me to a chiropractor in Carlton North (Melbourne). He immediately saw my symptoms and asked me to get a test for Pyrrole disorder. It came back positive. We started on treatment - supplementation and bodywork. I then recognized I needed emotional support as old memories and experiences were coming up for me – I was feeling the fatigue like I used to as a teenager. I saw a holistic counselor – a woman who combined counseling with kinesiology. As I got further into treatments I unfortunately experienced a worsening of symptoms (something that can happen when you start treating Pyrrole disorder). This time my symptoms included extreme fatigue, heaviness, brain fog, sensitivity to lights and sound, very light sleeping/interrupted sleep, tightness in jaw/neck/shoulders, disorientation, short term memory loss, vertigo, severe depression and anxiety. It just kept going – I would forget my way driving back from a place I knew well, once I stopped at green traffic light sure that it was red. It took a car coming up behind and honking at me to realise I was staring at a green light. I would forget everything about work from the week before, even forget where I wrote myself notes not to forget things. I would be constantly yawning. My skin broke out and became very oily. Everything seemed far too stimulating – holding a conversation took all my energy. Outside around trees my vision would perceive the greenery as vibrating and I would feel nauseous. Even the wind felt exhausting. I had experienced a lack of interest in hobbies, particularly anything creative for many years, though I still forced myself to try and do them because I knew they were good for me. There was always a sense of forcing myself, as opposed to just ‘feeling like doing something’. I would work 5 hours a day, 4 days a week and come home straight to my bed and stay there, so relieved I had actually made it through one more day. I isolated myself socially, would avoid speaking to my parents so they wouldn’t hear how flat I sounded. I wouldn’t want to talk my friends because I couldn’t bring myself to risk seeing them bored of me or hear myself say I wasn’t doing anything or that in actual fact, I was completely miserable. Eventually, after 6 months of my symptoms worsening, it was suggested to me by both practitioners that there may be an underlying infection. I was desperate. Completely fed up. And finally, I was in the right place at the right time. I found a kinesiologist who specialized in infections, who also worked in conjunction with a naturopath. They both had cured themselves of Lyme disease. She diagnosed me with many strains of Lyme disease along with several other co-infections. I sent my blood off to the US to confirm the testing – it came back positive. Finally, I had an answer to the last 17 years of my life. Now I am 3 months into antimicrobial treatment, and I believe that because of all the work I had been doing over the year – supplementation, diet, treatment for pyrrole, seeking emotional support, bodywork, acupuncture – my body was well prepared. I also did a training called the lightning process, which allowed me to empower myself and have a huge impact on my symptoms. Who I am now compared to who I was 3 months ago, is a completely different story. I have spent approximately $10,000 dollars on my health, just in 2015. I have borrowed from my family as I was struggling to work enough hours to support myself and the expenses just kept piling up. I cut my hours down to 20 hours per week from an already part-time role, as I experienced struggling more and more with my symptoms. I actually haven’t worked full-time for about 5 years, it has honestly just felt too hard. I vowed this would be the end of this struggling, this managing of symptoms, this relapsing.
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