1 PLEASE WITHHOLD MY IDENTITY AND ANY IDENTIFYING INFORMATION My Story • Name: • Age: • My address is: • My postal address is: [same as above] • You can contact me on: • I want my story to be public 2 3 April 2016 Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600 I am writing this submission as I have one of the co-infections that is tested for and treated by members of the Australian Chronic Infectious Diseases Society (ACIDS) in their investigations into chronic infections among their patients. I have seen Australians with Lyme-like illness suffer the devastating effects of their infections. I have observed the lack of support given to them in their efforts to obtain appropriate diagnosis and treatment. Like them, I have been dismissed, disregarded, given inappropriate treatment and repeatedly failed by the general medical profession over a long period of time. I wish to tell my story to highlight the fact that important consideration needs to be given to the co-infection Chlamydia pneumoniae, also known as Chlamydophila. This is covered by section g (any other related matters) in the enquiry’s terms of reference. My Journey I have been sick for 16 years. Prior to falling ill, my life was good. I was happily married with two young children. I had never been affected by serious illness. Importantly, I had a normal physiological response to stress and did not suffer from depression or anxiety. I began to experience unusual pain symptoms in 2000. My condition steadily deteriorated until by 2005 my life had become virtually unlivable. Relief did not come until 2010. I have positive blood tests from (USA) confirming a chronic active Chlamydia pneumoniae infection. My journey has involved 31 doctors and medical practitioners. I have received a diagnosis of ‘fibromyalgia’ and chronic myofascial pain. Consideration of Co-Infection Chlamydia pneumoniae Finding an overseas practitioner (USA) who had expertise in treating my debilitating symptoms was the turning point in my illness. This medical practitioner listened to me sympathetically and suspected that I had a chronic infection based on the symptomology that I described. Accordingly, he tested me for the co-infection Chlamydia pneumoniae. Blood tests conducted at (USA) in 2009 confirmed a chronic active infection. Chlamydia pneumoniae was acknowledged to be a new chlamydial species in 1989 (Grayston et al, 1989) and is recognised by the CDC (Centers for Disease Control and Protection) as carrying a ‘spectrum of illness [which] can range from asymptomatic infection to severe disease’1. Scientific understanding of the microorganism is incomplete. 1 CDC information on Chlamydia pneumoniae (2014) taken from National Center for Immunization and Respiratory Diseases. http://www.cdc.gov/pneumonia/atypical/chlamydophila.html 3 Its existence in Australia is not in dispute. It is described in the academic literature as an obligate intracellular parasite and is acquired through inhalation of airborne droplets expelled by an infected person. ACIDS has included it as a non tick-borne co-infection in its Borrelia and Coinfection Disease Guidelines 2014 Ver 1.51. It is recognized and treated by the International Lyme and Associated Diseases Society (ILADS). Its capacity to cause serious chronic symptoms in a subset of vulnerable individuals – irrespective of whether they have Borrelia – is not adequately understood by the general medical profession. My Symptomology Persistent pain is part of the symptomology of many Australians with Lyme-like illness and was my most prevalent symptom. On first presenting to my Australian GP in 2001 I provided a detailed, three page description of my symptoms, stating that they were so bad that I was terrified about how I would cope if they got any worse. These are summarised below: • Severe muscle stiffness on awakening • ‘Screwdriver embedded in spine, deep in chest’ on awakening • Sensation of vertebrae being fused together • Pain in the cervical vertebrae and at the base of the skull • ‘Steel vice clamping the back of my skull’ • ‘Heavy helmet screwed into my skull all the way round’ • ‘Feeling that skull is about to burst’ • ‘Living in a nightmare’ • Excessive muscle tension • Headaches • Memory loss • Confusion • Inability to multi-task • Red, itchy skin rashes By 2005, despite repeated visits to doctors and specialists, my symptoms had worsened: • Constant pain • Cognitive impairment – slow thinking and slow speech • Widespread myofascial trigger points • Disruption of skeletal muscle physiology • Muscles stuck in shortened position • Strange buzzing sensations in muscles • Electrical-type pain; the feeling that I had negative electricity flowing through me • ‘Living rigor mortis’ • Loss of weight • Loss of appetite • Anxiety • Depression • Dizziness 4 • Insomnia • Fatigue • Panic attacks • Exaggerated startle response • Hypersensitivity to noise • Respiratory difficulties when stressed • Enlarged lymph nodes • Loss of sense of well-being The pain and symptoms were so excoriating to my sense of well being that I kept pain diaries. I could not believe that the experience I was enduring was being treated with such apparent complacency by the medical profession. Some extracts from my diary may help the committee understand the nature of the pain: 31.01.01 Woke up with terrible stiffness in chest and neck. It feels as though the spinal column has seized up. Went to see my doctor. I’m frightened in case nothing can be done. I don’t trust myself to talk so I have written it all down for her. I’ve got to come out of there with something more than a recommendation to do Feldenkrais!! I cried on the way there. Sitting in her waiting room I felt a terrible pain and I cried again. Cried when I talked to her – just as well I had written it all down. 11.02.01 Today was hell... my back gradually drove me to screaming point. In the end I lay on the carpet and cried. I tried to do all the back exercises I could think of but nothing really helped. I cried and cried. I went and fetched [my husband] and said, “How much pain must a person endure before they go insane? I have reached breaking point. I feel I have suffered hours of torture every day for the last few months.” “Enough is enough,” I want to yell. “I will tell you everything I know.” 22.12.04 One of the worst days of my life. Dreadful, dreadful pain in my neck and head... As we made our way to the back of the bus I was crying with pain and a man said to me ‘I can tell that you are in a very bad way. Do you have medication and have you taken it?’... 23.12.04 I am in a living hell. I told [my husband] last night that he would have to help me. I explained that all the blood vessels in my neck are constricted and that the blood is not getting through to my brain and therefore I cannot think very clearly. I think this is what is happening. 20.03.05 I wake up in pain. Wire wrapped around my chest, my ankles. Pain behind my knees, my thighs. Deep aching pain in my hip, especially my right hip. Pain across the back of my head, neck, upper back. It feels as though I have been walloped on the back of my head by a baseball bat. My life is not right. 5 30.01.06 Mid-morning, pain crept up again. Tightness and pain at back of head, top of head, in cheeks. Pain in balls of feet, in toes. I had a lot to do before leaving the house and the pressure built up, along with the confusion and slow brain, and of course the pain. I had a bad pain at the base of my spine and could hardly sit down. I feel like a geriatric. In the car I got relief from massaging skull, feet, neck, ears and base of spine. It feels as though this thing is creeping ever further throughout my body. 19.08.07 Half of my body is wracked and twisted and the other half feels normal. My left leg and foot feel cold. There is a hard cold pain on the left side of my skull above the ear. I can’t concentrate on anything. All I can do is sit it out. Every few minutes I twist and tug at the muscles to pull out the pain. It keeps coming back, so I have to keep twisting and pulling repeatedly, all day. There is pain in my head, neck, shoulder and hips... There is a burning, stinging feeling all over my body. 16.07.08 In this hideous, weird world of central nervous system dysfunction: the horror of trigger point injections. Lying on that table. Enduring the mind-blowing pain of muscles being probed over and over again with a fat needle. The involuntary jerking of the neck. The electrical current in the surrounding muscles. The crunch of needle against bone. 31.07.08 Dreadful day. I got a day filled with pain. Feel as bad as I ever was. Pain in multiple places all down left side of body. Very bad in ribcage, throat, back of head and neck. Also brain fog. Loss of train of thought. I start something, forget what I’m doing, then start doing something else – but anything, not necessarily something connected to the first thing. I feel I will never achieve anything again. My life is virtually over. I feel very, very ill. Not right in head, not right in body. Living in a nightmare. Why, why, why? Malaise. I would rather be dead. My head has been unscrewed and screwed back on again all wrong.