Patient Story – A Submission to the Australian Senate Inquiry

Editors note:  Tragically this story depicts the many elements of neglect and denial that sick Australians typically face on their journey to recovery.  This experience is the norm, not the exception.

I would like my story to be made public, but my name and contact details withheld. It has been very difficult to re-visit and share all of this, and I hope some good will come of it.

At twelve years of age, I went from being an energetic student who delivered newspapers and excelled in various sports, to barely being able to move overnight. I was not the lazy child predisposed to inactivity that I would be accused of being so many times later by doctors and psychologists who were keen to fit me into a pre-determined ‘type’. That kind of character assassination by medical professionals who are seeking to fit patients neatly into a theory, whether they match it or not, has got to stop. The fatigue, all over body pain, and irritable bowel syndrome, came out of the blue and I had to stop all the activities I loved. I was never able to take them up again and my grades fell from As and Bs in my first semester of high school to Ds and Es by the second semester. I lived in Australia and I had never been overseas.

The local GP said it was likely that I had a virus, but I never recovered. When I tried to return to classes after a couple of days, I found that I couldn’t keep up physically. I could barely walk the ten minutes to school, and by 11am every day I was desperate to lie down. This continued throughout the rest of high school and was all the more awful because I liked school. I liked being with others, especially my cheeky and clever friends, and I particularly liked art and science – but I just couldn’t pay attention with the constant headaches, muscle aches and general weakness, among other things. Despite a healthy appetite I weighed only 42 kilograms and could not gain any more weight. I knew that something was really wrong, but it was all put down to the regular difficulties of high school. When I was fifteen I tried to get help from another GP who told me they didn’t believe in chronic fatigue syndrome and I would have to try someone else if that was the diagnosis I was looking for. I had never even heard of chronic fatigue syndrome. This was well before internet research was a possibility, and I was shocked to have a doctor speak to me this way. To me, this is evidence that some doctors are willing to put their ideological beliefs about some illnesses before any examination or getting to know a patient. These doctors are the ones who should be reprimanded.

At fifteen years old, my teachers told me to stop saying I was sick and told me I was to either attend school or work. This was an ultimatum that was popular among many doctors and psychologists at the time, and still is to this day. The popular belief was that patients like me were not sick at all and were just exhibiting ‘sickness behavior’. I hold every doctor who promotes such a thing personally responsible for the suffering that I, and others like me have subsequently been forced to endure because of it. I will never forget how alienated and confused this made me feel. The damage done to my self-esteem was profound.

At the time I couldn’t work at all so I chose to stay at school where I was forced to continue on as though I was healthy. There was no acknowledgement that I was sick, and the teachers denigrated me, labelled me as lazy, and as an attention-seeking troublemaker. Eventually I stopped asking for help. I was not given any form of assistance with the schedule or extra study time for assignments or exams like other students battling illness. Having to keep up with everyone else as though I was healthy was pure torture. I survived an overdose, but the doctor at the hospital made it very clear to me that if I continued to claim to be sick then I would have to stay at the hospital against my will as a psychiatric patient, but if I admitted that I was just seeking attention then I would be allowed to go home. This seems to be the sum treatment of doctors who think they can successfully treat so-called ‘sickness behavior’ and ‘conversion disorder’ by bullying and frightening patients into silence in order to get them to stop reporting their symptoms. Again, these are the doctors who should be reprimanded – not the ones successfully treating us with antibiotics and restoring our health.

I stopped reporting my symptoms from then on but they still continued. I began to self-harm to distract myself from the sheer brutality of the struggle to get through every day. I am aware that some self-serving politicians like to say that self-harm is a form of emotional blackmail, but in my case, and I am sure in many others, the self-harm was not attention-seeking because nobody knew about it. It was purely a survival technique I used to distract myself from my painful symptoms.

I tried to make sense of my situation by reasoning that there must be two kinds of people in the world – those who were important and those who were not important, and I did my best to accept that it must simply be that I fell into the latter group. I promised myself that if that was the way things were going to be, then I would just do the best I could. I tried a different high school but was threatened with expulsion when I turned up to class one day looking drunk; my first experience of neurological symptoms. The teacher hissed at me not to return to the school and I believe it was only due to the fact that I had a few good role models that instilled in me the virtues of tenacity and resilience that I managed to return to my old school and keep going with my life.

Having to return to the place where the adults treated me so badly and thought so little of me was both the worst moment in my life as well as my biggest test of strength. I classify the absence of anywhere for a student like myself to turn to as a form of negligence by the Department Of Education. Towards the tail end of high school I was forced to undertake the standardised testing exams but at the time I could hardly sit up, and when I asked to be excused I was told to stop acting up and to sit down. I had no choice but to simply circle answer ‘A’ for every question as quick as I could, without even reading the question so that I could go and lie down. Somehow I scraped through the VCE (exams) without doing homework. I completed essays by writing the ‘final’ copies first and then writing out a worse copy that would act as the draft version. The experience of being forced to try to keep up with healthy student’s timetable for six years was so traumatic that I had nightmares about completing high school until I was in my early thirties, and I generally avoid thinking about it to this day as the memories are still too harrowing.

After I finished school my GP decided although nothing had changed that I was suffering from depression. They told me the fatigue was due to a chemical imbalance in my brain and I needed the right anti-depressants to restore the balance. They said that the irritable bowel, body pain, nausea, and dizziness were a result of the depression. It didn’t sound right to me as the only reason I was unhappy was because I desperately wanted to participate in everything but was unable to, but I believed they knew better than me as they were the professionals and I trusted them completely. So I did what I was told and took the medication – but I only continued to get worse.

In my late teens and early twenties I did all I could to get better. I tried to work and only lasted a few weeks as a waitress. I couldn’t even manage walking to and from the venue each day. Dealing with the Department of Social Security was another nightmare where they took great delight in making demands of me that I was unable to keep up with, and I broke down in their office due to their constant bullying – which is another story. I didn’t smoke, I didn’t drink, and I took care of what I ate, but I continued to decline. By the time I was 23 I became acquainted with another form of torture. Along with all my other symptoms I started having fits where my limbs would jerk uncontrollably, my muscles would spasm and I would writhe around for hours in all kinds of pain. All I could do was watch the clock and wait for it to subside, and to use every ounce of strength I had to fight off the urge to throw myself into the traffic outside. I was taken in an ambulance several times to Monash Hospital and to St Vincent’s where the doctors accused me of taking “illicit substances”, then humiliated me in front of other patients and staff, and accused me of being a hypochondriac who was taking resources away from people who were really ill. The fits were frightening enough on their own without the added stress of those doctors treating me that way. It was a truly shocking and horrifying time.

I had one of those fits at the local shopping centre one day, and members of the public helped me to the medical centre on site. It would be another eight years before I discovered another patient with the same symptoms as me, but despite this fact, some shameful Australian doctors have been in the media recently saying that we are all copying each other, when in reality many of us have been struggling for years thinking we were the only ones with these symptoms. The GP who saw me at the shopping centre sent me to hospital where I was seen by a visiting international doctor who told me I needed to stop taking the anti-depressants immediately. The fits slowed and almost completely stopped for a few years but I remained ill overall and the fits returned if I tried to stay up late or overdid things. I was finally granted a disability pension, but it took five years of applying before the Government agreed that I was eligible and the Department of Social Security stopped treating me like I was less than human.

More years of my life passed by and were wasted, but I was still not sent to an infectious disease specialist to be investigated for infections. Not once did it ever come up. Eventually after seeing several chronic fatigue specialists, I began to change my diet – unbeknownst to me at the time it was the same way that Lyme disease patients are told to change their diets. I cut out gluten, dairy, and eventually sugar, and started to put on weight and I began to see a small difference in my symptoms. The psychologist in charge of me at the time diagnosed me with a ‘food phobia’ because of the dietary restrictions I was trying out, even though I was eating properly with a dietitian’s help and I was finally putting on weight. I was then sent to a new specialist who wanted to try other types of medication. To my relief this specialist spoke to me like I was a human being and didn’t seem to have a pre-determined theory to fit me into. I again took the medicine I was told to, and I wore compression garments which provided a little relief from fatigue and persistent tachycardia but only enough to raise my quality of life so that I could carry out small activities now and again and try off-campus, part-time study. Eventually I was able to study part-time on campus but I couldn’t do much in class and still suffered all the time with a plethora of symptoms including constant dizziness and nausea which made it impossible to carry out the smallest task, and I was still unable to work and take care of a lot of things for myself. I wanted so much to socialise with my university friends, but I was just physically incapable.

By the time I turned 30 and moved house, my new local GP told me that they were certain that I had Multiple Sclerosis (MS). By now, I had developed drop foot, anterior compartment syndrome, couldn’t walk properly, walked into things, fell down randomly, dropped things, slurred my speech and had other neurological symptoms. The GP sent me to a rheumatologist who told me there was no MS, and tested me for everything they could think of (except for infections) but again nothing came up. The GP sent me for a second opinion and further testing for MS at a hospital, but again, I was relieved to be told there was no MS.

Some months later I happened to meet another patient who had the same walking pattern as I did. I was told they were being treated for tick-borne disease and I found out who their doctor was. I thought it was unlikely that I would have the same thing they did because I had suspected a lot of different illnesses over the years and none of them ever turned out to be the cause, so I assumed this would come to nothing too. I asked my rheumatologist about it, but I was told they wouldn’t test for it as it was rare. I know I am not the only patient who encountered this response. This is unacceptable, because it means that those supposedly rare cases who do exist will not receive the diagnosis or treatment they need because doctors consider them too rare to bother to watch out for. Surely, doctors have a duty of care to everyone including anyone with an illness or a disease that happens to be rare.

After a year of procrastination, I reluctantly made an appointment with the tick borne disease patient’s doctor out of a sense of duty I felt to continue to search for the cause of my illness. The Australian media and the Department of Social Security always made me feel like such a horrible burden on society. I am subject to the unwinnable situation whereby if I continue to seek out medical assistance then I am ‘doctor shopping’ but if I don’t, then I am doing the wrong thing by Social Security who insist I keep trying different doctors and keep a record of everyone I see.

To my shock I was diagnosed with tick-borne disease after twenty-five years of being sick. I was told that my symptoms matched, and my blood results were positive for Borrelia burgdorferi sensu stricto under laboratory criteria. It is important to note that the laboratory stated I was positive for this bacteria under their own criteria, but negative under the Centres for Disease Control (CDC) criteria. This is important because if I were tested at an Australian laboratory instead, they would have sent me away with a negative diagnosis and no treatment, and I would still be sick today instead of thriving. Luckily, my new doctor paid attention to my symptom picture and the positive result, and I was treated for neuroborreliosis and co-infections with the same treatment given to patients for chronic Lyme disease; anti-microbial herbs and four kinds of oral antibiotics for almost two years. This treatment did not just make me better, at thirty-six years of age and after twenty-five years of illness I became almost totally well. It was an unexpected miracle.

I am proof that some Australians can and will recover with long-term antibiotic treatment and antimicrobial herbs. I saw no improvement after the traditional 28 days of treatment recommended by the CDC but incredible improvement at the six month mark, and continued improvement until I was forced to cease treatment nearly two years later. I am so grateful, but angry that it took this long to be diagnosed and treated. I am saddened about what I had to put up with until now, and it upsets me to think that others may not be given the same chance to recover as I have been given.

I became so well that I was able to start looking for full time work. More than fifty symptoms vanished. I had nerve conduction tests again and this time I was told I no longer had anterior compartment syndrome. My periods became regular and are no longer painful and heavy, which is a wonderful relief that I celebrate every month. I can now drive for over an hour and I can drive at night. I can brush my own hair. I can prepare my own elaborate meals and I can taste and smell so much now that I couldn’t before – I didn’t even know until my sense of taste and smell returned that I had been without them. I can shower without having to lie down for three hours afterwards. I can go to a hairdresser without getting sick from the fumes and having to leave, I can do several things at a time. I can do several things within one hour instead of one thing at most per day. I can sit up long enough to study on campus full time, and I cannot tell you how much I love meeting people and volunteering. I can write essays, stories and poetry again. I can read again. So far, I can type at 70 words per minute and I’m still improving. I can think and plan complex tasks. I can think about one theory and hold it in my mind long enough to compare it with another.  I love philosophy. I can follow music theory, play piano and compare musical scales. I can walk, and I can speak without slurring, and give presentations. I can conduct short conversations with shop assistants and bus drivers. I can hold short conversations with friends, travel on buses, trains and planes, and I can apply for jobs, and give interviews – all things I could not do before. And perhaps best of all – I can live independently, work, and make my own money, which means of course, that I now have complete freedom.

More research is needed into Borrelia burgdorferi as well as other strains of bacteria and co-infections. The lack of research is clearly not good enough in a developed, and intelligent country, like Australia. Meanwhile, the reputations of patients as a group and of Lyme-treating doctors are being dragged through the mud by inexperienced celebrity doctors and others in the media who spread false horror stories about us. They exaggerate our stories and encourage the public to think of patients as conspiracy theorists. Their description of patient’s experiences bears little or no resemblance at all to my story, nor to any of the stories of the patients that have become my friends.

It is unthinkable that the doctor who initially diagnosed me as well as the doctor who treated me, both so instrumental to my successful recovery, have been reprimanded and forced to stop treating patients. The Government should be commending these doctors and paying them to train other doctors, not subjecting them to reprimands and conditions on their registration. I had just about completed treatment and was approaching 90% health when I was told my treatment would stop prematurely. Now I don’t know what the future holds or whether my symptoms will return. What is certain is that I will fight for my life. I will give my body the best chance of staying healthy.

Patients are dying, some are committing suicide, and many of us are completely debilitated for decades and are being denied antibiotic treatments that have worked for a lot of other patients. Meanwhile powerful people argue that the exact cause of these symptoms should be discovered first, before any treatments can begin. This is unacceptable and unbelievable in a country like Australia. Those of us who have faced this illness are strong, brave, and resourceful; we deserve the chance to recover, to be independent, to work and to have families of our own. Nobody should have to suffer so long without support and medical care. We deserve better than this.

If you have a Lyme story you would like published, please do not hesitate to contact us.  The LDAA works tirelessly, and will continue to lobby, the Australian Government for a resolution to this debilitating illness.