My Story

In 1995, after eighteen months of living with a host of symptoms, including daily nausea, dizziness, feeling unwell and losing almost a fifth of my body weight I was diagnosed with a parasitic infection. The diagnsoses was made by Great Smokies Diagnsotics, a US-based lab who saw a growing niche market and majority of pathology labs did not use suitable methods necessary to diagnose Dientamoeba fragilis. Most people with symptoms of a bowel infection were at the mercy of local labs, as I had been. These labs neither specialised in detection of Dientamoeba fragilis, or Blastocystis hominis, nor misdiagnoses was who favoured local labs had failed Great Smokies had My elation at finally discovering the cause of my illness was quickly deflated when I was unable to find anyone to treat me. The many Sydney gastroenterologists, parasitologists and microbiologists I consulted during the next six years did not believe that the parasite caused ill health, and I had no choice but to suffer indefinitely the consequences of a parasite later described as being able to cause "severe bowel distress" in some people.

I was unaware of the medical controversy surrounding a parasite which had first been identified in the early 1900s, a debate as to whether it caused symptoms had not been settled. I was just someone infected with a bowel infection who needed treatment. I was yet to find out just how much medical opinions of the majority medical specialists would play in entirely blocking any attempts at recovery. I was diagnosed with a touch of "irritable bowel syndrome". IBS, I was told, was incurable. Years of medical training culminated in advice to try peppermint capsules, eat more roughage, and if these measures failed, to see psychiatric help. It was another seven years before I discovered I was also infected with Blastocystis hominis. This is my story. It is not unique by any means, and is the reason I have kept the site going for the past decade - to overcome narrow and dogmatic views of health professionals.

In 1994 I began to suffer from bloating and needle like pains in my stomach, especially after eating. After three months I suffered most of the following symptoms every day:

Bloated stomach
Dizziness
Constant hunger, even after eating a large meal.
Cravings for carhohydrates and sweet foods.
Unquenchable thirst.
Sore stomach
Hot, inflamed and sore bowel, visibly swollen with a hot ball of glue feeling beneath each hipbone.
Fifteen kilos weight loss.
Feeling constantly unwell and chronically fatigued.
Swelling (oedema) under eyes.
Sleeplessness due to uncomfortable feeling in bowel and constant hot fluctuations in temperature.
A feeing that my bowel was about to burst.
Constant nauseau with occasional vomiting.
Racing heart when other symptoms increased - usually in response to eating a starchy food.
Depression, anxiety, inability to focus thoughts, listlessness.
A thick white/grey coating on tongue..

After two weeks of feeling unwell, bloated and food intolerances my doctor ordered testing by a local lab. One sample was negative for infection, but showed the presence of "occasional white cells". A blood test showed a raised ESR (erythrocyte sedimentation rate). Both are considered non-specific markers for inflammation somewhere in the body, but in the light of the negative stool test the results were deemed insignificant.

Over the weeks the symptoms steadily grew in intensity and each day had become a struggle to cope with feeling sick. ill and dizzy.

I soon realised that starchy foods, and fruit, increased the burning pressure in my bowel, making me feel weaker and more unwell than usual.

I was ften asked if I was aware of the EBM (Evidenced Based Medicine). Ironically the most common definition of EBM is taken from Dr. David Sackett. My emphasis on the last sentence.

"(EBM) is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of the individual patient. It means integrating individual clinical expertise with the best available external clinical evidence from systematic research." (Sackett D, 1996).

Although I was always thirsty, and had to drink at least four to six litres of water a day, when the symptoms were intense even a glasss of water made me feel sick.

When a six week course of herbs, prescribed by a local naturopath, failed to relieve any of the symptoms my doctor prescribed Flagyl. Within days I felt much better, and by the end of the treatment I was completely cured of the mystery illness, or so I thought. Six weeks later the symptoms returned in force. Another round of Flagyl had no effect, and I was back to battling a host of disabling symptoms my doctor could neither explain nor treat.

A "touch of irritable bowel"

Two months after becoming unwell I consulted a gastroenterologist, the first of many.

My bowel was clearly visible as a rigid tube next to my left hipbone, and I was sure a hot glue had become lodged inside. I felt very unwell and had lost eight kilos.

The specialist said the swelling was due to trapped air, and was typical in patients with an irritable bowel. Apparently my brief response to Flagyl was not unusual in IBS patients, and modern medicine had been unable to explain this phenomenon. The specialist believed my relapse after Flagyl was proof that fact a bowel infection was not causing my health problems, because the drug is considered gold standard for all bowel infections, and a parasite would not have survived.

According to a colonoscopy the following week I was the owner of a "healthy pink colon". I asked if an infection could be diagnosed by colonoscopy. I was assured that it was, and that bowel samples taken during the 'scope showed no evidence of infection, parasitic or otherwise.

An endoscopy diagnosed "gastritis of unknown origin", and an infection with H.pylori infection - the bacteria discovered to cause ulcers by the Australian Barry Marshall. I felt no better after taking drugs to treat H.pyloria, and a repeat endoscopy showed the bacteria had survived.

Based on the negative 'scopes, and the results of a single unfixed stool sample, I was diagnosed with Irritable Bowel Syndrome (IBS).

A few months later I consulted another gastroenterologist for a second opinion. Another colonosocopy and a barium x-ray showed no evidence of organic disease. I was rediagnosed with IBS.

I wondered how IBS, considered by experts to be a functional bowel disorder with no organic basis, could make me feel so unwell? The IBS pamphlets I had been given to read made no mention of feeling unwell, and wondered if it was a symptom common to other sufferers, but not mentioned because it isn't able to be measured objectively.

I also wondered if I could be infected with an exotic parasite Sydney labs lacked the expertise to diagnose. My idea was considered unlikely by medical professionals. Only one general practitioner doubted the accuracy of standard stool testing because he remembered being told in medical school that a single stool sample was less than fifty percent diagnostic.

Based on his advice I wrote to a hospital for tropical diseases in northern Australia, listing my symptoms and asking if they believed it possible I was infected with a parasite. They never replied.

Desperate for an answer to my baffling condition I 'doctor-shopped', hoping eventually to find someone who would recognise my symptoms, and diagnose and treat me. I was too sick to settle for living with an incurable syndrome any longer than necessary. The only symptomatic relief on offer was peppermint oil capsules and the stool bulking agent Metamucil - neither of which made the slightest difference the disabling symptoms.

I had more stool samples tested, always one and never in fixative. Predictably they were negative. In desperation I asked for, and was prescribed antibiotics, including more Flagyl, but the drugs made not the slightest dent on how the symtpoms.

I searched libraries and bookshops for information. I could find only one book, Bursting the Allergy Bubble by Arthur Stanley, which made reference to parasites. I wrote to Arthur, and I was very grateful when replied. He said I should contact a general pracititioner, one of only a handful in Sydney in 1995, who used a specialist lab for diagnosing patients with baffling smyptoms. A testing kit was ordered and submitting one sample, I was to provide three stool samples in jars with liquid fixative.

Anxious to hear the results I phoned the GSD Sydney agent for the results. "I have good news, and bad. The good news is that Dientamoeba fragilis was found in the last two of three samples. The bad news is that we don't know how to treat it". Clearly local labs were not as accurate at diagnosing bowel infections as I had been led to believe. Because of the diagnostic limitations of testing three samples Blastocystis hominis evaded detection until 2001.

The doctor who ordered the tests practised a combination of orthodox and alternative medicine. After an expensive course of intraveneous vitamin C., weeks of Citricidal and a course of tetracycline, I was no better. Because I was relying, in part, on the help of family and friends to pay for the treatments, I decided to ask the advice of the gastroenterologist I had consulted when I first became unwell, hoping he had a better idea of how to to treat this common, and underdiagnosed parasite.

The gastroenterologist's creed: "I'll see it when I believe it"

The specialist's view was that Dientamoeba fragilis did not cause symptoms, and therefore did not need treating. He encouraged me to accept hia diagnoses of an irritable bowel. I was too ill to settle for living with such disabling health problems, without any hope of relie, and so returned to the second gastroenterologist. His opinion mirrored the first – the parasite was a harmless commensal and I should accept I suffered from IBS.

Specialists who were unfamiliar with the parasite consulted colleagues for advice. Over time I grew to dread the second appointment because their verdict, that D.fragilis is a harmless pathogen, became too predictable. After a few years exhausted from the illness and in despair at recovering my health I would oftenbreak down crying after leaving the surgery, too ill to care if anyone saw me crying.

I did manage to remain fairly optimistic, clinging to the hope that eventually I would find a specialist, or alternative therapist, who could relieve me of some, if not all, of the symptoms. Staying in a positive frame of mind was quite a feat. I had lost almost a third of my body weight, felt constantly ill and toxic, and the burning, inflamed colon regularly drove me to distraction. I often resigned from part time jobs where I worked only a few hours a week, because of the unpredictability of the symptoms. After about three years I was trying to cope with another problem - deep depression bought about by the hopelessness at the situation I found myself in.

I knew it was in my interests to hide my depression because I had read the IBS medical literature linking psychological distress with IBS. I suspected that some specialists' close questioning about any stresses in my life was to establish this link. To their questions I replied that apart from the stress of not knowing how long I would have to continue to suffer the unbearable symptoms, knowing that the simple act of eating could make me feel worse, the financial burden associated with living on a low income because I was too sick to work, plus spending money trying to find a cure, I had no other problems in my life.

Two years after becoming infected I took their advice and consulted a psychiatrist, hoping that if I could get the all clear then perhaps someone would take my disabling symptoms more seriously. After three sessions the psychiatrist said he would no longer see me because the problem was not my mental state, it was my physical health which needed attention. By the time I saw a second psychiatrist in 1999 I was in need of help. I consulted the professor not only about my depression, but in the hope that he could advise about a drug which helped people cope with chronic illness.

I explained to the professor that I was exhausted and depressed from coping with the illness, and that numerous specialsits did not believe the D.fragilis was causing my symptoms. As the professor nodded in an encouraging manner I felt confident enought to tell him that I had recently cautiously broached the subject of a bowel resection with two gastroenterologists without success. The professor, suddenly smiling, stood up saying "That sounds like an excellent idea, tell them Prof. X said to do the operation". For a few seconds I sat in disbelief, before realising that the appointment was at an end. I walked out feeling as though I was in some kind of Kafkaesque nightmare. As I walked to the bus stop I sobbed at the hopelessness I felt, and the overhwhelming fear that I would be left to suffer like this for the rest of my life.

It felt at times that my claims of feeling so unwell were not always believed. Once, as I leant on the arm of a friend for support whilst waiting for a colonoscopy, a gastroenterologist remarked rather harshly "Oh come now Jackie, it can't be that bad". I had been unwell for four years at that stage, weighed forty-one kilos and had only a few brief intermittent spells of relief. Clearly I looked as bad as I felt, because three weeks earlier I had asked direction to the gastroenterologist office in a pharmacy. The assistant, looked me up and down before saying said with concern: "If you can walk that far, it's two blocks away".

Another specialist also seemed to believe I exaggerated my symptoms when he said that if he was to ask people walking past his surgery how they were feeling, ninety percent would say they did not feel one hundred percent ok.

Over the years I continued to seek help. An expert on infectious diseases at a Sydney teaching hospital was unfamiliar with D.fragilis, but promised to contact my doctor with his findings on this parasite. He replied "I was able to confirm that Entamoeba fragilis is a normal commensal in the human gut and that it is very unlikely to be causing Jackie's symptoms.". Apparently I was now infected with a strange hybrid parasite. A few months later a microbiologist, based at another teaching hospital and also unfamiliar with Dientamoeba fragilis, promised to investigate and contact my doctor with his findings. He never did.

After these experiences I began to feel more discouraged, but I was too sick to give up. I made another appointment with a gatroenterologist. Based on previous test results he reconfirmed the IBS diagnosis but nevertheless referred me to a blood specialist. The haematologist conducted a number of tests, and based on these he declared me "fit and well" according to his results.

One night I ended up in the emergency ward of a large Sydney teaching hospital after a severe bout of bowel pain. Thankfully severe pain was not much of a feature of the illness. After two hours of being monitored the hospital prescribed pain killers and I was discharged with a diagnoses of suspected appendicitis. Although the hospital said the pain was not in the right spot to be a grumbling apendix, they advised me to return if the pain returned. Whilst there I had mentioned being infected with D.fragilis. The doctor had not heard of the parasite and showed no interest.

Food is an important part of a balanced diet (Fran Lebowitz, writer).

The very thing which sustains life and brings joy to human existence, eating, had the power to make me very sick. Starchy foods were the worst offenders. Even small amount of seemingly innocuous rice or a piece of fruit increased my symptoms to the point where I could was unable to do anything but lie in bed with my head in a bucket.

My weight had dropped considerably (see photo) and a bad flare-up often resulted in losing even more. Paradoxically the more I ate the thinner and sicker I became, a paradox my doctors were unable to explain or understand. Anorexia was hinted at. I had increased my carbohydrate intake to prevent further weight loss, but after three years of severe symptoms I gave up and severely restricted my diet to three meals of steamed or pureed non-starchy vegetables with fish for variety (I'm a vegetarian).

Although a restricted diet relieved the worst of the symptoms, it didn't stop the dizziness, fatigue or feeling unwell. What it did lessen was severe attacks, when I became so unwell I was unable to function.

Because the illness and dietary restrictions affected my social life, I dreaded those occasions which revolved around food, such as Xmases, birthdays, dinner with friends. How bad would I feel on the day? Would I cope, or finally break down in a physical and emotional heap as I often felt I might do.

Every day was a battle to stay on my self self-imposed dietary wagon. I was aware of the price I paid by giving into my cravings for a sandwich, some fruit or a piece of cake to wake up my deadened taste buds, but sometimes I did - and the price way heavy.

Sometimes I decided to defy the parasites and eat a slice of cake. On this occasion I took my dogs and the cake to the park. As I ate the delicious cake I sobbed, feeling as though the cake was a hand grendade, which would explode my colony of parasites into unmanageable numbers. The parasites didn't let me down. The very next day I felt more toxic and spaced out, the coating on my tongue became thicker and slimier, I had mouth ulcers, felt fluey, and from under each hipbone my colon began to swell. Three days later I was in bed, vomiting and feeling like death warmed up and sinking into such a state of exhaustion that I no longer cared if I woke up. On the second day, exhausted and feverish, I felt an unusual sensation of liquid gushing from the bowl as I passed a stool. In the toilet bowel a mushy, semi formed stool was surrounded by half cupful of bright red blood, and wrapped around the stool were two long flat flat pieces of tan coloured tissue. I donned plastic gloves and detaching it from the stool, placed it in a jar which a friend

friend took to the doctor for lab analysis. It looked like a a flat, dead, worm but the lab reported it as "necrotic material". A gastroenterologist said the blood loss was most likely due to hemorrhoids. Another gastroenterologist doubted the laboratory finding of necrotic material. "Whatever was diagnosed wasn't necrotic material - this only happens when you are severely ill and can die.". Both times I had felt the worst I'd ever felt, but after years of barely managing the illness I felt too sick to care.

By 1988 I was barely coping emotionally with an illness which impacted on my every waking hour. I barely slept at night, and when I did I was plagued with nightmares of being trapped in dank cellars by monsters, or preventing planes from crashing by taking control from shadowy figures. Uncomfortable hot sweats, as though my body was responding to an infection, meant I rarely slept with more than a single sheet, even on the coldest nights.

I began to limit my exposure to specialists, only making appointments when I felt emotionally strong enough to cope. In 1988 I ventured out again.

The new gastroenterologist did not believe D.fragilis was causing my symptoms, but I felt renewed hope in his theory that my reactions may be due to chemicals in food - specifically amines, salicylates and glutamatines. The allergy clinic I was referred to placed me on a diet restricted of foods containing these naturally occuring chemicals. Given my track record with starchy foods I was apprehensive because the encouraged foods I knew from experience I reacted strongly to. Nevertheless I was keen to try a different approach, hoping that the clinic was right - I had been unwittingly exposing myself to these natural chemicals, and mistakenly blaming my reactions on starchy foods.

Determined not to allow any preconceived notions about foods stand in the way of success I began the diet feeling enthusiastic and hopeful - and also mindful that if anything went wrong I was in the hands of experts. After four years of self imposed dietary restrictions I felt as though I had been let out of a cage. I was allowed foods I had avoided for years. Rice bread and noodles, whole rice, potatoes, lentils, kidney bean, buckwheat, beans and more bulked out my usual mela of steamed and pureed vegetables. I was allowed rice bubbles with rice milk and pear halves for breakfast, as well as pancakes with golden syrup as an evening snack. I was in a short lived heaven.

I did my best to ignore the warning signs, hoping that withdrawals from the food chemicals were to blame, as the clinic advised. However the food diary I was asked to keep reflected the inevitable - the high carbohydrate diet, as usual, was making my symptoms worse. "Tongue more coated, colon feels inflamed and sore, feel shaky and sick, stomach sore, eyes puffy" was one diary entry. Neither the specialist, dietician or doctor could understood my reaction. The dietician advised, at my second and final appointment, to "keep trying". Needless to say I didn't. Read original diary here.

By 1998 I had almost lost hope of finding anyone to treat me in Sydney, and briefly considered travelling overseas to find help. The London School of Tropical Hygiene & Medicine seemed an obvious place to find help for someone with a parasitic infection and it was there I hoped to be treated with Iodoquinol, the drug most often cited in D.fragilis medical literature. Another doctor, and a colleague present, believed, judging by their frequent exchange of glances and smiles, that I was barking mad to think of travelling so far have an unimportant parasite treated, let alone pursue treatment a drug with a reputation for causing blindness. I knew about the terrible spate of blindness caused by Iodoquinol in Japan in the 1970s, but I also knew that the composition of the drug had been changed so that very little was systemically absorbed, and since that time no further reports of blindness had occurred. Without knowing these details I would have given up hope of recovery then and there, because I had failed treatment with the drugs Flagyl and tetracycline - both described in medical literature as a D.fragilis treatment.

I also explained that local labs had failed to detect the parasite because they tested only one sample, and did not use fixative. "Surely fixative would kill the parasite" the doctor said, looking quizzically at his colleague, before explaining that the Australian medical community believed specialist labs overdiagnosed non-pathogenic organisms like Dientamoeba fragilis.

I didn't end up travelling to the UK for treatment because I discovered the drug was unavailable in that country. I had also discovered through the site management that the dogma surrounding the pathogencity of D.fragilis was not limited to Sydney doctors. It was a problem worlwide.


The web to the rescue

Until the invention of the internet the medical profession enjoyed the unquestioning acceptance of their knowledge. Early in the infection, before finding the scientific studies which appear on this site, I had little choice but to accept the views of Sydney doctors I had consulted that D.fragilis was not causing my symptoms.

Based on their expert opinions I sought other reasons for my illness, and when the internet became more widely accessible, I spent searched for clues for my illness. I joined email groups for people with Crohns disease, Inflammatory Bowel Disease (IBD), Irritable Bowel Syndrome and Candida. Groups specifically for parasitic infections did not exist, and any mention of parasites elicited responses mirrored by orthodox medical views. Parasites were a problem only in third world countries with dodgy water and poor hygiene, not in the west where we were "too clean" to have a parasite problem.

At that ime only a few medical sites mentioned D.fragilis, none exclusively, and all questioned its pathogenicity. I found a few messages posted on health bulletin boards from people seeking advice about their own, or a family members, D.fragilis infection.

It was almost 1997 and I had manaaged to locate two people who had recovered after specialised treatment. Based on their experiences I questioned the medical advice I'd received, and decided to see if I could find any information about this parsite at Sydney university's medical library. I asked a friend along for suport in case I found nothing, or worse the literature confirmed medical advice. By the end of the day, I was shaking and crying, not only from exhaustion, sickness and hunger, but excitement, coupled with anger, at what I had found. The studies not only listed my symptoms, but also confirmed the need for specialised stool testing. I felt more hopeful that the information would be enough evidence to help get me treated and release me from my prison of illness.

I thought the more studies I presented, the less chance they were likely to be dismissed, and spent weeks searching for evidence to support my case for treatment. There was no difficulty in finding literature overwhelmingly concluding the parasite caused symptoms, and I had another happy shock when I found the reseach showing that more D.fragilis are excreted when the subject is placed on a high carboydrates carbohydrate diet, and excreted when carbohydrates were excluded. This proved that my extreme reactions to starches were simply because I was feeding my parasite colony.

Gastroenterologists and other specialists barely gave the copied and collated research a glance. Mostly it was ignored. I was often asked if I was aware of the tenets of Evidence Based Medicine (EBM)? Based on EBM there were no studies conclusively proving the parasite caused symptoms. A specialist explained how the the views of Sydney doctors were largely based on a local study - Diagnoses by faecal culture of D.fragilis infections in Australian patients with diarrhoea. (Sawangjaroen N et al. Trans R Soc Trop Med Hygiene, 1993, Mar-Apr;87(2):163-5.). The study's conclusion "Until D.fragilis is confirmed to be pathogenic, perhaps diagnostic labs need not seek it aggressively" had taken firm root in the minds of Sydney specialists. The flaws in the study - highlighted by the authors - that the infection had been underdiagnosed by examining only one stool sample from each patient, and using samples too old to reliably cultured; and that some of the samples were too watery to be reliable - had been overlooked.

It appeared that my return to health hinged on a flawed local study.

I contacted the authors of a few of the studies I had found, including an Australian professor who was sympathetic but equivocal about the pathogenicity of D.fragilis. He had heard of a Melbourne doctor who became briefly interested in the parasite, but had given up after too many treatment failures with Flagyl. A Queensland gastroenterologist was sympathetic to my plight, and wrote: "all the textbooks say DF is nonpathogenic, so it's like "it's written in the bible" (or koran, according to your faith) -   people just don't think any further.". I exchanged lengthy emails with a UK associate professor critical of doctors for believing traditional dogma about "non-pathogens". He believed many factors influence the pathogencitiy of an orgnism, and said that clinicians, particularly in Australia, have needed "a wake-up call for some time" on the matter of D.fragilis. Other D.fragilis researchers who had contributed a great deal to confirming D.fragilis' pathogenicity were also helpful and supportive, and also critical of the widely accepted dogma that D.fragilis was not a pathogen.

Sharing the information

Because it was obvious from reading the literature that D.fragilis was a common, but underdiagnosed parasite, and the unsettled pathogenicity debate was spread throughout the world, I decided to to present the literature on a website, to help others get diagnosed and treated.

Within a few months I was receiving about between 10 and 20 enquiries a week about D.fragilis testing and treatment. Many of these people were in the same position as I - diagnosed with D.fragilis but under the care of doctors whose rigid views made sure the parasite was either not treated, or treated inadequately. Many of these people gained access to treatment by printing out the information on this site and presenting it to their doctors.

I also also able to gain valuable information about the views of health professionals and their prescribing habits.

Because B.hominis is more common than D.fragilis, and easier to diagnose, in 2001 increased from twenty a week to between ten and fifteen every day, from people whose doctors considered the pathogenicity of B.hominis unproven.

I was able to help others but I still couldn't find anyone willing to treat me. My symptoms hadn't changed and I was depressed. The drug iodoquinol was not available in Australia, and despite my best efforts I hadn't been able to locate a source in Australia. I had managed to find Humatin (Paromomycin), after asking my GP to arrange authorisation with the Therapeutic Goods Administration for her to prescribe it, a saleman at Parke-Davis agreed to supply me two doses without charge. After two treatments, a few months apart, I felt no change in symptoms.

I had reached the point where I wished I had a terminal illness so that I could eventually escape the suffering. It was only by helping others overcome their infection that I was able to go on and it was a measure of comfort knowing that my own suffering was not entirely without reason.

Desperate diseases require desperate remedies (Old English proverb):

It's a fact that chronic illness causes a vulnerability borne out of desperation, which is why in my search to relieve the symptoms of an untreated bowel infection, I ended up spending thousands of dollars on alternative therapies trying to find a cure.

I was aware that the use of alternative therapies was, in 1995, frowned on by the medical profession because of the attention the subject received in the media. I once upset a gastroenterologist just by mentioning I drank soy milk. He angrily told me that I should know that soy milk is used to give laboratory animals cancer. I've was never able to confirm his statment. He also said the fecal test result was "unscientific", and in a letter to my doctor wrote that the Great Smokies result was "complete nonsense and worthless" and my "alternative view of medicine made it a little bit difficult to help me", despite the fact I had only mentioned soy and shown him the stool test result. He described me as a "sensible, articulate person with very little subcutaneous fat". I was happy to learn that being thin and sensible weren't mutually exclusive! He also said that although my weight loss difficult to explain on the basis of IBS, he did not believe Dientamoeba fragilis was causing my chronic health problems.

He was the first, and last, speicalsit I mentioned my earnest pursuit of alternative therapies to.

One of the first therapies I tried was colonic irrigation a few weeks after the second Flagyl failure. Colonics, according to the advertisement, cleansed the colon by the force of pressurised water. I reasoned that if I had an infection the force of the water could help dislodged, and flush an infection out of my bowel. Prior to the colonic the burning hot glue feeling was prsent only on the left side, but two days later I felt the the same sensation on the right, as well as the left side. Could the force of the water have spread the infection further into the bowel? The clinic thought this unlikely.

I made an appointment with an alternative health clinic in the city. I burst into tears when they told me other clients, with symptoms similar to mine, had recovered by taking well known, and expensive, digestive product which "cleanses the bowel of impurities". I cried because it was the first time I had heard of anyone treated for similar symptoms, let alone that recovery was possible. I had felt very unwell for nine months, and I was hopeful that relief was just around the corner. For eight weeks I consumed two tins, at a cost of around $AUD90.00 a week. The product contained vitamins and minerals, rice syrup solids, rice flour and fructooligosaccharides. If I had known that parasites consume bowel bacteria, which the sugars in this product were helping to multiply, or that the rice flour was a food source for my parasite colony, I would have been less ready to accept the explanation that the increase in symptoms was due to Herxheimer reaction, or "die off". The clinic reassured me that my reaction was proof the treatment was working. As it turned out I was paying to keep my parasites well fed.

An increase in symptoms not the only way of measuring progress, according to the therapist. Applied Kinesiology, or muscle testing, was also used to monitor improvement and was tested by my ability to withstand the force of the therapist pushing on my outstretched arms. This part of the therapy stretch the boundaries of common sense, but it was part of the package, and so I participated. By the end of eight week I had spent $1,000 and felt worse than when I began.

After being diagnosed and discovering the D.fragilis literature I pursued Candida as a possible reason for my health problems. It was a popular diagnoses, and made on the symptoms. I made an appointment with a clinic who advertised themselves as specialists in diagnosing and treating this condition.

The waiting room was full, and I hoped it was a sign of their success. The turnover was certainly fast,and before long I found myself seated before a white coated therapist asking me to describe my symptms. I had barely passed describing the bloating and food intolerances when the therapist interrupted to say that symptoms were typical of Candida. He placed two small bottles of herbs on his desk, assuring me that I would feel much better in two weeks. "Are you sure this will work" I asked, remembering the six weeks of previously failed treatments. "It works really well for Candida. You'll be feeling better in no time". I paid $80.00 for a consultation lasting less than five minutes, and $70.00 for the herbs. By the end of the treatment I felt no better, but it was some consolation that I felt no worse.

Over the next seven years I pursued many different treatments, including two courses of Chinese medicine with different therapists. I brewed bitter tasting herbs brewed in a clay pot, and aprart from throwing up once, experienced no change in symptoms. I tried again after discovering a college of Chinese Medicine nearby who charged less than the private therapists because their treatments were administered by students, overseen by a qualified pracitioner.

For two months I was treated with herbs and acupuncture, but made no progress. The students were concerned that I was not feeling any better. My lack of response bought me to the attention of the clinic director, who decided that I needed his special ministrations. He transferred my care to his clinic on the opposite side of town and it the consultations would cost me more. Three years into the illness I was ready to walk over hot coals to get some relief, but after three months of moxabustion, more acupuncture, and different herbs I was no better. When I told the therapist I could no longer afford to keep up the treatments he said I wasn't any better less to do with his treatments, and more to do with being focussed too much on my physical health.What I needed, according to the therapist, was a full time job to keep my mind off my health problems. One of the reasons I was stopping treatment, apart from the fact that it wasn't working, was because I had to give up my part time job because, weighing 41 kilos, I was too ill to continue working.

In between appointments with alternative therapists and gastroenterologists, the former mainly diagnosing candida and the latter Irritable Bowel Syndrome, I purchased alternative therapies from the internet and health food shops - falling for anything which claimed to kill parasites, yeasts and "cleanse" the bowel.

Despite my doubts about colonics I tried again. After five sessions a sweet and sympathetic therapist was no longer prepared to treat me because I was too underweight. She gave me the name of a spiritualist.

I fell for the Sputnik – a metal capsule which "travels through the body emitting MR frequencies every 3 seconds stimulating, unblocking and killing or disabling parasites" I studiously ignored the lack of testimonials on the site, shut down my critical reasoning faculty and ordered two Sputniks at $100 each. Apart from feeling an intermittent tingling as the capsules worked their way down my digestive tract, nothing changed. I may as well have swallowed the dollar notes I spent buying them for all the effect they had.

I tried various other therapies, including many Bernard Jensen's colemas which I did at home for about two years; homeopathic remedies, high doses of amino acids under the guidance of a therapist who included, for an extra fifty dollars, a colonic containing oxygenated water to kill anaerobic pathogens. I bought two bottles of triple strength Oil of Oregano over the internet. I tried Echinicia, bovine columstrum, vitamins and colloidal minerals and massive doses of Vitamin C. to boost my immune system.

I bought every product I could find claiming to relieve IBS, and "cleanse" the bowel, including bentonite clay, which "attracts and neutralize poisons in the intestinal tract, help eliminate food allergies, food poisoning, mucus colitis, spastic colitis, viral infections, such as stomach flu, and parasites". It only made my constipation worse. Charcoal tablets, psyllium, peppermint leaf tea, slippery elm bark had no effect, nor did months of Hulda Clark's wormwood, cloves and black walnut tinctures. I put together a Zapper, supposed to electrocute parasites, but my parasites didn't seem to be on the same wavelength. I munched my way through two bushes of Chinese Wormwood grown in my backgarden.

Ironically the only thing which had an effect, albeit minor, was also the cheapest - garlic cloves costing a few dollars a kilo from the local grocers.

I was also desperate enough to drink diluted food grade Hydrogen Peroxide, touted by a salesman at an alternative health fair as able to "kill, or severely inhibit the growth of anaerobic organisms such as bacteria, intestinal parasites and viruses". I was past caring about adverse effects at that stage, or if it could kill me. My biggest fear was having to cope indefinitely with an untreated bowel infection.

In 2000, when I discovered two obscure Indian herbs which had anti-parasitic properties, I had all but given up on a cure using alternative therapies. I had spent thousands of dollars without any result, but decided the herbs were worth a try. To obtain the herbs I had to pay a therapist to administer them. The company who manufactured the herbs provided the name of a practitioner of Ayurvedic medicine, a therapy described as an Indian "Spiritual Health Science" and one which places a great emphasis on the mind as playing a role in health problems. The Ayurvedic therapist was not prepared to prescribe the herbs unless I tried his approach first. For three weeks I should eat my meals in a "settled, happy state away from TV"; eat only when "empty"; drinking ginger tea; rice water with cinammon and ginger; daily oil baths and meditate for three weeks. I was left feeling less than hopeful. I paid the $150.00 fee for the hour long consultation, returning three weeks later no better. He prescribed the herbs, and I paid $70.00 for the follow-up consultation. After four weeks on the herbs there was no change in my symptoms.

I gave up trying to find a cure with alternative therapies.

Help at last

By late 2000, after a break of almost two years, I decided try once more to find medical help, and I made another appointment with a new gastroenterologist. My mental state was fragile trying to cope with the illness, and I largely avoided anything to do with the medical profession, with the exception of my wonderfully supportive general practitioner.

As I sat in the waiting room, clutching the manilla folder of D.fragilis research, I hoped that this specialist would be the one to change the course of my illness, and that he would agree to test and treat me according to the literature.

As usual little interest was shown in the positive D.fragilis from 1994, or the literature. As he began to go through a list of possible reasons for my condition, years of built up frustration and anger came to the fore and I angrily snapped "Why haven't you mentioned the D.fragilis infection". I was shaking and upset from feeling particularly ill on that day, and no interest being taken in the parasite. After I had calmed down I asked the doctor to allow me to have three samples, preserved in fixative, tested. He reluctantly agreed to allow me two samples - without fixative. He wrote out the requisition, but when I took it to the lab the nurse said only one sample had been ordered, not two. After a phone call, the two samples were authorised.

An hour after evacuation I delivered each sample to the lab.

Because the samples were cultured, four days passed before the specialist phoned to tell me they were negative. He also said he was not prepared to see me again, and that I see my usual gastroenterologist.

In late 2000, a few months after the last disastrous try, I decided to make one last attempt and made an apointment with a seventh specialist. This outcome was the same - he did not believe that D.fragilis was causing my chronic illness.

About a month after my appointment, I had a particularly bad attack and was laying on my bed crying. I felt sick and weak and I felt close to cracking, as I often did, from the strain of coping with the illness. A friend encouraged me to write a letter asking if the therapist would consider a bowel resection. I had read about a woman diagnosed with Irritable Bowel Syndrome who had been given an ostomy. Her symptoms were the same as mine, and an ostomy had greatly improved her quality of life.

Having nothing to lose I wrote the letter, acknowledging the specialist's view that D.fragilis did not cause symptoms. I asked him to consider helping me by performing a resection, or removing my bowel, because my symptoms were so disabling I could no longer cope. It was a slim chance, but I really felt this was my last hope.

After another severe attack a week later I phoned the clinic to find out if they had received my letter. They had and to my surprise booked me in to see the same specialist on that day. As I sat down I said "I know you don't believe D.fragilis is a pathogen" but he surprised me by starting to look it up on the internet. I suggested he look at my site, as it contained the published research. I held my breath as he read my site. This was by far the most interest any health professional had ever shown. I'll never forget what happened next - he turned and said "I think you have something here". I remember the effect of his words - as though an enormous weight had been lifted from me. I knew then that my search for help was over, and I knew I was going to get the help I had searched so long for.

The specialist contacted a parasitologist for advice about testing, and by coincidence it was the same parasitologist who had tested the two negative stool samples a few months earlier. Three samples were collected in liquid fixative, and the results were continued infection with D.fragilis. I discovered I also had Blastocystis hominis.

I was treated with Iodoquinol and doxycycline, and my symptoms reduced by sixty percent - considering how ill I had been it was a massive improvement. I was retested a few weeks later, and neither D.fragilis nor B.hominis were found. Luckily because of my experience managing the site I was aware that purging can increase the detection because by forcing them out of the bowel. After submitting purged samples B.hominis was detected. I took a combination of Flagyl and Bactrim but experienced only a slight improvement, After seven years of constant disabling symptoms I was happy to be even this far ahead. After the treatment another three fixed samples were negative for B.hominis.

A colonoscopy revealed minor inflammatory changes.

My symptoms now are about eight percent improved to what they were. I still have days when I feel unwell, when I get the familiar feeling that something is glued to my colon and the mushy stools, fatigue, dizziness return and it is always in response to sweet, starchy foods. Unlike before I was treated the symptoms die down after a few days, instead of being constant. I've also regained the fiften kilos I lost, and can eat a much wider range of foods without such a violent reaction.

I don't know if I'm free from parasites. I travelled to many countries where I was at risk from parasites. I once unwittingly ate salads for a week in a Greek island restaurant whose toilet walls, used by the cook, were smeared with fecal matter.

My testing history shows that I don't test easily for parasites. For instance in the 1995 Great Smokies Diagnostics result only D.fragilis was found. The three fixed samples tested at a Sydney hospital in 1997 were also negative for D.fragilis and B.hominis - but this could have been due to the lab's inexperience in diagnosing these parasites. The two "hot" samples tested by a highly skilled parasitologist in 2000 were also negative for both D.fragilis and B.hominis, and the three samples tested after finishing Iodoquinol and doxy were also negative for D.fragilis. and B.hominis, where purged samples detected B.hominis. In my management of the site I've encountered other people who do not test readily to parasites. Perhaps in some people the parasites become more embedded, and therefore are less likely to shed in fecal samples.

My remaining symptoms could also be due to pathogenic bacteria, or damage from the bowel.

For many years I lived completely without hope, and through the site I have met many people who have felt the same way. Many of these people recovered after specialised treatment. Until there is a widespread understanding in the medical profession that great suffering is caused by undiagnosed or inadequately treated parasites my story will continue to play itself out in other people. Although I wish I had never had to go through this experience, it gave me a great deal of empathy for others who are struggling to find medical care. Not everyone with parasites experiences such illness, but for those who do the experience of living with a medical condition which is largely unrecognised, underdiagnosed and often inadequately treated can be a nightmare. I'm glad mine is largely over.

Jackie, Jan 2006