"It's not that they can't see the solution.
It is that they can't see the problem."
G.K. Chesterton — The Point of a Pen
When I came down with the gastrointestinal parasites Dientamoeba fragilis and Blasto. hominis in 1994 the general consensus among health professionals worldwide was that these parasites are not harmful to human health. For seven long years I fought to have the infection recognised as a cause of my chronic health problems. My story is not unique. I've encountered thousands of people over the past two decades who had the same problems finding meaningful medical help for what is, ultimately, a treatable bowel infection.
My seven year illness started out with with fairly benign symptoms - bloating and feeling slightly sick after meals plus knitting-needle like stomach pains. Food took ages to digest as my stomach churned away like an old cement mixer.
Three months later I was doing battle every day with a host of difficult and debilitating symptoms including headaches, dizziness, brain fog, sweating, irritability, anxiety and chronic fatigue. My healthy looking pink tongue was now coated with a thick layer of yellow and grey gunk. I was chronically constipated and my bowel felt extremely sore and irritated. I looked pale and sick, and felt very unwell.
At first I tried herbs prescribed by a local naturopath, but after three weeks I wasn't any better so I booked in with my GP. A single stool sample was tested for infection, but came back negative. However, white blood cells were found in the stool, and my blood ESR levels were elevated. Both of these are markers of inflammation somewhere in the body. Inflammation is an sign of infection but without positive result, these results were ignored.
After a week on Flagyl I was back to my old self: The symptoms died down completely and I could eat normally. At last I was able to put the mysterious symptoms and dietary problems firmly behind me. Or so I thought.
Seven weeks later the symptoms came back with a vengeance. When I failed to respond to a second round of Flagyl my GP decided it was time to consult an expert in digestive disorders – the first of several I consulted over the next 7 years.
If symptoms persist....
By the time I saw Gastroenterologist No. 1, I had been battling severe symptoms for about three months. My colon was so irritated and inflamed swelling was visible below my left hipbone. I had also lost about 10 kilos.
The specialist thought the swelling was due to trapped wind. In his opinion I had an “irritable bowel”, a common symptom in patients with Irritable Bowel Syndrome (IBS). My relapse after Flagyl was proof that I did not have an infectin because "Not much survives this drug. It's the gold standard treatment for all bowel infections" according to the specialist. He wouldn't even consider the possibility that whatever I had might have evolved to become resistant to Flagyl, or that the result of the stool test might not be accurate. "If you have something" he said, emphasising the "if", then local labs were more than capable of picking it up. He was obviously miffed I'd even suggested such a thing.
Physicians should be more concerned about the competence of the labs to which they submit samples and be better informed of techniques used routinely by the laboratory before accepting positive or negative reports at face value.
Yang & Scholten. AJTM&H, Vol 26, No 1, 1975
Although he was certain that I had IBS he booked me in for invasive and expensive testing: a colonoscopy and endoscopy. The results were clear. Nothing had been found to explain my symptoms. I was assured that the samples were tested for parasites. As I discovered later by ringing half a dozen high profile Sydney labs, neither D.fragilis or Blasto. were routinely looked for. These common parasites were considered harmless and therefore not worth going to all the trouble and expense of diagnosing. Especially because the stool needs to be in fixative, which is more costly for labs to provide.
In 2001 the only treatment recommendation for IBS was to go on high fibre diet and try peppermint oil capsules. That was the extent of what modern medicine could offer - and there was scant evidence to back up these treatments as I found out later.
I decided I had to seek the opinion of second expert in digestive diseases. Surely he could help.
To my dismay his opinion mirrored the first: I had IBS, Flagyl fixes everything and there was no question that local labs could have missed an infection. Like his predecessor he also decided to back up his diagnosis with another colonoscopy, and a barium x-ray.
As expected the results were clear.
Luckily for patients like me a new lab in the US had opened up. It offered people the chance to find out if they had what were commonly, but wrongly, thought of as unusual and rare gut parasites. Great Smokies made available the type of stool collection and testing methods recommended in decades of scientific literature. Of course, considering medical views about D.fragilis and Blasto., diagnosing it didn't go down well with orthodox health practitioners. Great Smokies were considered a shonky lab for diagnosing what were widely believed to be “harmless” gut parasites.
Criticism against them was harsh for diagnosing what were widely considered to be harmless parasites. The results went against decades of accepted and unquestioned dogma - and a lot of doctors didn't like it one bit.
Despite this widespread criticism they were opening doors for people like me who had no hope of getting diagnosed anywhere else. Like much of my medical history I found the likely culprit, the organism that might be making me very ill, only through sheer luck.
I had taken to haunt bookshops and libraries hoping against hope that somewhere I would find some kind of connection between IBS and infection. One day, eighteen months after falling ill, I first saw the words “exotic parasites” in an alternative health book. I couldn't believe it. Every other book about IBS and digestive problems focused on food as a trigger. Maybe I had an exotic parasites which local labs weren't equipped to diagnose. How right I turned out to be. Feeling extremely hopeful I wrote to the author of “Bursting the Allergy Bubble” Arthur Stanley to find out how to go about getting these “exotic parasites” diagnosed!
This was in the days of snail mail, but it only took a week for Arthur's prompt and invaluable reply to drop into my letter box, and with it the name of a Sydney GP who could diagnose me.
I duly sent off three consecutive stool samples all preserved in fixative - as Blasto. and D.fragilis researchers recommend.
D.fragilis was found in the last two of the three stool samples. The first was negative. Five years later Blasto. was diagnosed. It took me that long to convince a doctor to test me properly, according to the scientific guidelines.
The GP who diagnosed me explained that the recommended drug, Iodoquinol, wasn't available to patients here in Australia. He presccribed the antibiotic tetracycline with a course of herbs and two (very expensive) intravenous vitamin C. treatments.
They didn't help. I was still as sick as ever. I thought that Specialist No 1 would surely know how to treat it. I duly booked in.
Instead of being pleased I'd uncovered a possible reason for my symptoms, he was annoyed I had gone outside of mainstream medicine to get diagnosed. He insisted that local labs were more than capable of making a diagnosis. Hi opinion, and that of most other doctors, is that D.fragilis is harmless to human health. I had IBS, not an infection.
To my great consternation Gastroenterologist No. 2 echoed the opinion of his predecessor. He wasn't happy that the diagnosis was made overseas and not locally. He thought the result “unscientific” and tossed it back to me. When he asked about what I could and couldn't eat I explained that fruit, anything sweet and high carb foods aggravate the already difficult symptoms, but that soy was ok. Suddenly he leant across his desk towards me, balled his fists, turned an angry red and blustered "Soy! Soy!!! We used to give soy to lab animals to give them cancer!". I can only assume that this was because in 1995 soy was considered an “alternative” food, ie eaten by hippie types who shunned doctors in favour of alternative therapists. In fact the word “alternative” was a complete anathema to many doctors at the time.
In his follow-up letter he wrote that the fecal test result "unscientific, a complete nonsense and worthless”, and my apparently "alternative view of medicine made it a little bit difficult to help me”. He did think that my significant weight loss was “difficult to explain on the basis of IBS”, but in his opinion Dientamoeba fragilis was not the cause of my chronic health problems.
He was the only one to mention D.fragilis infection in his follow up letter to my doctor which goes to shows how unimportant this parasite, one which can cause so much misery, was seen by the medical profession.
The symptoms weren't getting any better, and I could barely eat, so I decided to consult an expert in infectious diseases at a Sydney teaching hospital for his opinion on D.fragilis. He was not familiar with this parasite, but promised to do some research and get back to me. To my doctor he wrote: "I was able to confirm that Entamoeba(sic) fragilis is a normal commensal in the human gut and that it is very unlikely to be causing Jackie's symptoms.".
I tried another infectious disease specialist at a different teaching hospital on the other side of town. He didn't know much about this parasite either, but promised to investigate and write to my doctor with his findings. He didn't.
Another gatroenterologist reconfirmed the IBS diagnosis and referred me to a blood specialist where I had extensive blood work done to rule out anything sinister going on which may have been missed. As with all the other tests the results were fine, and his report declared me "fit and well".
One evening I ended up in the emergency department of a large Sydney teaching hospital with severe bowel pain. Thankfully pain was not a regular symptom for me, although it is for a lot of people with Blasto. and D.fragilis. The hospital suspected a grumbling appendix, although they thought the pain was in the wrong spot. The hospital doctor was not interested in my positive result, and wasn't familiar with D.fragilis.
Being repeatedly told that I have to endure the symptoms that had ruined my life without hope of getting better had landed me in a very dark place. I started to believe that suicide was the only way for me to find relief. So, seeking help for the depressive state I was in I decided to see a top psychiatrist in his field, one I had seen on tv.
I explained to the psychiatrist how unwell I felt, and how I battled nausea, chronic fatigue, dizziness and just felt terrible every minute of the day, and how I had to stay on a very strict diet to avoid it all getting worse. I explained how several medical specialists refused to consider D.fragilis as a possible cause of my symptoms. I confided that in desperation I had broached the subject of a bowel resection with two gastroenterologists after reading about a chronic IBS sufferer helped by having her bowel cut out. It sounds extreme, but at that point it seemed my only hope of any getting back my life. Suddenly the psychiatrist sprang from his chair as though I'd supplied him with the answer to a problem he was seeking and exclaimed "Ah! That sounds like an excellent idea! Tell them Prof. X said to do the operation.".
I sat there shocked to the core. I was in some kind of Kafkaesque nightmare. Obviously he thought that not only was I stupid, but I was also a deluded middle aged woman who refused to accept the advice of experts in the field.
Feeling utterly defeated I broke down after leaving his office. I often did. I didn't know if I would ever get better, and the symptoms were so hard to deal with. I knew it was in my interests to hide my distress. I had read several medical studies which emphasised the role of psychological distress in IBS. Not that the distress was triggered by awful symptoms, but rather the other way around. I certainly didn't want to give them more ammunition with which to ignore the infection and focus on my mental state, which is how doctors appointments often ended up. I was always happy to tell them that before I fell ill I lived a stress free and happy life.
Psychological symptoms were found to be more common in patients with functional gastrointestinal complaints, but it is debated whether they are primarily linked to GI symptoms or rather represent motivations for health-care seeking. Upper gastrointestinal symptoms, psychosocial co-morbidity and health care seeking in general practice: population based case control study.Bröker LE. BMC Fam Pract. 2009 Sep 9;10:63.
The Web to the rescue
Until the invention of the internet the medical profession enjoyed unquestioning acceptance of their knowledge I had little choice but to accept the mainstream view that D.fragilis wasn't causing my symptoms, so I sought out other possible reasons for why I was so sick.
I spent a lot of time in groups about IBS, Crohns and SIBO. Discussion groups about parasitic infections weren't around in 1997 – a time when everyone thought parasites were considered rare and only a problem in countries with poor sanitation and water quality. D.fragilis barely rated a mention on the internet. What little there was described it as probably rare and most certainly harmless. Blasto. had no web presence at all.
I came across two people who had recovered from D.fragilis. One was a 19 year old girl who had fallen very ill and lost a lot of weight. She recovered with Iodoquinol – a drug recommended in the D.fragilis literature but banned here in Australia. Another was a woman who recovered with tetracycline which hadn't worked for me. She described her symptoms as “brutal”. Imagine that! Recovery was possible! What a revelation. It gave me so much hope. She suggested something that I had never thought of doing – researching this bug at a university medical library to see what I could find out. To my detriment I assumed my doctors knew what they were talking about. So, imagine my excitement when, within an hour, I had found studies like these:
Gastrointestinal symptoms occur in one quarter to one half of infected patients. These include abdo.pain, diarrhoea, flatus, anorexia, nausea and vomiting, weight loss, anal pruritius and fatigue. Symptoms may persist from weeks to years. D fragilis - a bowel pathogen?
Oxner et al. New Zealand Medical Journal 1987
Of special interest are the reports by a few parasitologists and physicians who themselves, or whose relatives, were infected by this parasite. Mushy stools, abdo. pains, fatigue, loss of appetite and weight loss were among the symptoms experienced.
D Fragilis: A Review with Notes on its Epidemiology, pathogenicity, mode of transmission, and diagnoses. J Yang and TH Scholten, AJTM&H 1977 Vol 26, No.1
I had to assume that doctors just were unaware of all the research of D.fragilis I was finding, much of which concluded that D.fragilis is a likely pathogen which should be treated. As usual I felt exhausted and ill but I climbed ladders to get to the dusty old tomes which held the buried research which would eventually lead to this site as well as my recovery. I copied and collated what I'd found, and took it back to the first specialist.
He wasn't interested. He didn't even want to look at my bundle of research. Instead he waved a study at me then explained how the views of Sydney doctors were largely based on this local study - Diagnoses by faecal culture of D.fragilis infections in Australian patients with diarrhoea. (Sawangjaroen N et al. 1993) which concluded "Until D.fragilis is confirmed to be pathogenic, perhaps diagnostic labs need not seek it aggressively". The advice had taken firm root in the minds of Sydney GI specialists.
Other specialists reacted the same way to the research I presented them with in the vain attempt to get someone to take my infection seriously. At best they thumbed through the valuable research before handing it back to utter the dreaded words “I'll consult with colleagues”. Mostly though they weren't interested.
Getting this response from every health professional, the gatekeepers of medicine, was very, very distressing. In 1997, after three years battling intense symptoms, I was in a very fragile state mentally. I decided to stop seeing doctors for a while. However, before I gave up for two years I ventured out once more to see another gastroenterologist. This one wasn't interested in the research or the diagnosis either. Instead he pushed two sample sachets of the stool bulking agent Metamucil towards me. When I explained that psyllium, the main ingredient in Metamucil, only made me more chronically constipated he barked at me "Well, do you want them or not??".
I gave up.
The gastroenterologists creed: I'll see it when I believe it
Few doctors grasped how unwell I was. A GI doctor made it clear that he thought I was exaggerating my illness when he snapped impatiently "Oh come now Jackie, it can't be that bad”. He had seen me leaning on the arm of a friend – literally for support - because I felt so ill. Another GI specialist thought that 90% of people walking by his surgery would say that they don't feel very well either if asked. It was extremely disheartening to realise that the only people who could help me navigate my way out of this nightmare seemed to think I was putting it on.
Not everyone was as blind to my dire state of health. A pharmacy assistant I had stopped to ask directions to a specialist's surgery said with concern, looking my 41 kilo frame up and down, “It's two blocks that way — if you can walk that far" . One GP left a note in my letter box asking me to rebook as she was concerned about my significant loss of weight. I never did because at the appointment she had wanted to contact one of the GI specialists – except that it was after hours. I promised to come back and didn't. Hence the note in my letterbox.
Apart from seeing doctors and not getting anywhere, I was also fighting a significant battle on another front - food!
Food, the very thing which sustains life and brings joy to human existence, now had the power to make me very ill. Everything I ate seemed to upset me, but starchy, sweet foods were the worst offenders. Even seemingly benign foods, such as a spoonful of rice or a piece of fruit sent the symptoms spiralling out of control.
At first I ate carbs to stem the weight loss, but paradoxically the weight loss increased, something that no one could explain. Finally, to keep a lid on the symptoms, I limited myself to eating three small meals of steamed non-starchy vegetables a day. If I ate anything else I always ended up in bed vomiting and feeling like death warmed up.
Pattern of excretion of D.fragilis following dietary adjustments. Researchers placed an infected subject on a diet of mainly carbohydrates. Between day 1 and 30 - increased numbers of D.f. were found. The subject was then placed on a protein diet and retesting began at day 60. Between day 60 to 80 less D.fragilis were excreted.D.fragilis. A review with notes. J.& Scholten et al. AJTM&H 1977
It was certainly a battle to remain on my self self-imposed diet because I had to be so strict. I craved things I ate before falling ill - a sandwich, a piece of fruit or some cake all foods which now provoked an extreme reaction in my body. I didn't often fall of the wagon because I knew the outcome. For instance, one day I ate a piece of cake just to feel normal and wake up my now dead taste buds from the lack of variation in my diet.
The next morning the warning signs had appeared. I awoke with a thicker yellow coating on my tongue, and mouth ulcers. My eyes were puffy. My body felt toxic. I felt shaky and even more unwell. After three days I felt so unwell I was unable to get out of bed. As well my eyes were almost swollen shut and my lips were puffy. My heart raced and I vomited several times.
On the second day of this, feeling exhausted and feverish, I passed a stool along with a lot of bright red blood. Wrapped around it was what looked like some type of flat worm. Donning plastic gloves I detached the the two tan coloured pieces of matter and placed then in a jar which a friend dropped off to a lab. The flat, dead, worm turned out to be "necrotic material".
I started seeing specialists again, as I thought what I was experiencing was significant. One specialist doubted the laboratory finding: "Whatever was diagnosed wasn't necrotic material - this only happens when you are severely ill and can die.". That's exactly how I felt, and that's exactly why I had to limit my diet so severely. The blood loss was passed off as haemorrhoids. Later research led me to believe that I was experiencing an extremely strong inflammatory immune response to the infection.
"If there is no correlation between the Blastocystis subtype and pathogenic potential it is possible that the host immunological response determines symptomatology" Are Blastocystis species clinically relevant to humans ? Robyn Anne Nagel MB, BS, FRACP. University of Queensland. 2012.
A new gastroenterologist had another solution. He didn't think D.fragilis was making me sick either, but he did think that my symptoms were being triggered by naturally occurring chemicals in food. He assured me that most of his patients responded to a special diet which excludes amines, salicylates and glutamatines. I allowed myself a glimmer of hope. Had I at last found the doctor who could help me? I couldn't afford to feel too optimistic. The inevitable let down was too hard to bear.
He referred me to the allergy clinic at Royal Prince Alfred Hospital in Sydney, where I saw a dietician and a doctor who started me on a diet restricted of foods containing these naturally occurring chemicals. I felt very apprehensive given my track record - the diet was full of starches and fruit I'd been avoiding. I had to put my faith in the experts, hoping against hope that they were right — that I'd been unwittingly exposing myself to these natural chemicals and mistakenly blaming my reactions on starchy foods.
So, I started the diet determined not to allow any preconceived notions about food stand in the way of my success. Despite my doubts I felt more optimistic than I had for a long time. It was also comforting to know that if the symptoms spiralled out of control then at least I was in the hands of experts.
The allowed foods were all the ones I'd been avoiding for years: Rice bread and noodles, whole rice, potatoes, lentils, kidney bean, buckwheat, beans. These foodstuffs and more bulked out my usual meagre meal of steamed or pureed veggies. I ate rice bubbles with rice milk and pear halves for breakfast, and pancakes with golden syrup as an evening snack. I was in food heaven.
I did my best to ignore the warning signs. I hoped that withdrawals from the food chemicals were to blame for the symptoms, which the clinic thought likely.
However the food diary I was asked to keep reflected what always happened – that my symptoms got a whole lot worse on starchy foods:
"Tongue more coated, colon feels inflamed and sore, feel shaky and sick, stomach sore, eyes puffy" was an early diary entry. The more I persevered with the diet the sicker I got. At my second and final appointment the dietician advised me to keep trying.
I had explained to the dietician and clinic GP about my D.fragilis diagnosis and that I was considering going overseas for treatment because I couldn't get help here. They said that I was mad to consider travelling so far have such an unimportant parasite treated, let alone pursue treatment with a drug which has a reputation for causing blindness. "You might come back blind and still have the symptoms" they chimed merrily. Thankfully, because of my research, I was aware of the terrible spate of blindness caused by Iodoquinol in Japan in the 1970s. I also knew that the composition of the drug had been changed so that very little was systemically absorbed, and since then no further spates of blindness had occurred. Without this knowledge I think I would have given up there and then.
I told them about the shortcomings of stool testing, and that local labs had failed to detect the parasite because they tested only one stool sample and didn't use fixative. “Surely fixative would kill the parasite" said the doctor, before telling me that Australian medical community considered Great Smokies a dodgy lab for overdiagnosing non-pathogenic organisms like Dientamoeba fragilis.
I didn't end up travelling to the UK for treatment because I had discovered via Badbugs that the problem of underdiagnoses was truly global: The UK was as much a backwater for getting diagnosed and treated as it was here in Australia.
My first try with a real drug
In 1998 I finally got to try a drug recommended in some medical studies as a treatment of D.fragilis. The drug was Paromomycin/Humatin. After a lot of government red tape, authorisation to prescribe was granted and my doctor wrote the script. A sympathetic salesman at the pharmaceutical company Parke-Davis supplied me with enough for two prescriptions without charge.
Paro. made no difference to my symptoms. My infection was stronger than that.
By this time I was beginning to wish the illness was terminal to escape the suffering. It was a measure of comfort to know that what I was going through was not entirely in vain because by 1997 I had started BadBugs which meant I was in a position to help others overcome their infection even if I couldn't do so myself.
In 1997 I decided to upload the buried research to the web in the hope that it would give this parasite the long overdue recognition it deserved. Presenting this information on my site helped a lot of people who ordinarily would have stayed sick not knowing what they had. Most success stories hailed from the US where Iodoquinol, the drug most cited in the D.fragilis medical literature, was only available to patients in the US. It wasn't available in any other country because orthodox medicine wasn't interested in D.fragilis, or Blasto.
BadBugs also gave me the opportunity to gather valuable information about the views of health professionals worldwide and their prescribing habits - which varied between do nothing to prescribing several rounds of Flagyl in case of undiagnosed Giardia. I learnt that the problem of underdiagnosis and misdiagnosis wasn't confined to Sydney specialists. It was truly a global phenomena. IBS was nearly always the primary diagnosis and D.fragilis was ignored.
I added the Blasto. section to my site in 2001 after being diagnosed. As with D.fragilis there was very little about Blasto. on the web. This parasite turned out to be another D.fragilis: Underdiagnosed, under-recognised and often untreatable with conventional meds.
Meanwhile I was in earnest pursuit of a cure with natural therapies.
Down the rabbit hole
Chronic illness causes a vulnerability borne out of desperation, which is why in my search to relieve the symptoms of a bowel infection I ended up spending thousands of dollars on alternative therapies. My case is not unusual. By not taking these parasites seriously the medical profession unwittingly drive people to try alternative therapies. This happens because medicine holds no answers for patients like me.
One of the first natural therapies I tried was colonic irrigation.
Colonics is supposed to cleanse the bowel by the force of pressurised water. I didn't know at the time if I had an infection or not, but I figured if I did a colonic might be able to dislodge and flush it out. At least that was the theory. Not only did it fail to work, but two days later I could feel the same intolerable burning sensation previously only apparent beneath my left hipbone. Now my colon below my right hipbone was burning and visibly swollen. Could the colonic have spread the infection further into my bowel? The clinic thought it unlikely. I wasn't so sure.
A year and a half into the illness I cried tears of relief when a therapist at a natural health clinic assured me that clients with similar symptoms had either recovered or were on their way under their care. All I had to do was take two tins of Ultra Clear Maintain a week, a Metagenics product which was sold as "Medical food formulated to provide specialised nutritional support.". It contained vitamins and minerals – as well as lots of carbs and sugar in the form of rice syrup solids, rice flour and fructooligosaccharides. Not suprisingly my symptoms got a whole lot worse. The therapist assured me feeling worse was proof that the treatment was working: I was experiencing a Herxheimer reaction or "die off".
She also monitored my “progress” by muscle testing, or Applied Kinesiology. I couldn't see how it could possibly diagnose any improvement, but it was included in the weekly check ups so I participated. By the end of eight weeks I had spent over $1,000 - only to feel worse than when I started.
Not getting anywhere with the D.fragilis diagnosis I decided to pursue Candida as a possible reason for my chronic health problems. Just about everyone who ended up seeing a natural therapist was diagnosed with it. Candida was to alternative therapists as IBS is to orthodox medicine.
So, hoping this was the answer, I booked in with a clinic who advertised as specialising in curing this apparently widespread condition.
I hoped the bulging waiting room was a sign of their success. The turnover was certainly fast. In less than 5 minutes I was seated in front of a therapist explaining my litany of symptoms. I had barely started when he interrupted me with a wave of his hand. "Your symptoms are typical of Candida" he said placing two small bottles of herbs in front of me. "You'll feel better within a week. It works for our other patients.". His treatmentdidn't make a dent in my symptoms. It was small consolation that at least I didn't feel worse.
I pursued varied and many other types of alternative therapies. I brewed bitter tasting Chinese herbs in a special clay pot. The therapist had assured me it was a good treatment for parasites. However, apart from throwing up once, there was no discernible change in the symptoms.
I booked in with a student college of Chinese Medicine near where I lived. They charged less than a private therapist as their treatments were administered by students overseen by a qualified practitioner.
The young students were very interested in my case, but confident I could be helped. Unfortunately after two months of herbs and acupuncture I was not one jot better. My total lack of response bought me to the attention of the clinic director who decided that I would do better if I consulted him privately, where he could treat me using methods not available at the clinic. The consultations would cost more, he told me, but he was confident he could fix me. I didn't have much alternative but to hope he was right. Three years into the illness I was ready to walk over hot coals to get some relief, but after three months of moxabustion, acupuncture and an assortment of herbs I was no better.
When I explained to him that I couldn't afford to keep seeing him, he said that the reason I wasn't better had far less to do with his treatments than me focussing too much on my physical health. Apparently what I needed was a full time job to keep my mind off my health problems. One of the reasons I had to stop seeing him, apart from the fact that his treatments weren't working, was because I had to give up my part time job. I had become to ill to continue working.
I spent thousands of dollars buying anything which claimed to rid the bowel of parasites and yeasts. There was no end of choice - treating parasites and digestive disorders is a lucrative market. I downed bottles of Triple Strength Oil of Oregano, tinctures of Wormwood - an old treatment for worms, and I'm embarrassed to say that I fell for the Sputnik – a metal capsule all the way from Russia promising to "travel through the body emitting MR frequencies every 3 seconds stimulating, unblocking and killing or disabling parasites". Studiously ignoring the lack of testimonials on the site, I shut down my critical reasoning faculties and ordered two at $100 each. Apart from some intermittent tingling as the capsules worked their way down my digestive tract, nothing changed. I may as well have swallowed the money for all the effect they had.
I ate pumpkin seeds until I sounded like a maraca (a much touted treatment for parasites). It doesn't work.
I tried various other therapies, including Bernard Jensen's 'colemas', which I did intermittently at home. Lying in a freezing bathroom whooshing cold water up your insides is no laughing matter when you're skin and bone and feel desperately ill.
Under the guidance of a natural therapist I went on an expensive course of high dose amino acids. It was supposed to build up my immune system to fight any infection. For an extra fifty dollars a colonic using oxygenated water to kill anaerobic pathogens was thrown in.
It didn't work.
I tried homeopathy remedies, Echinicia, bovine columstrum, vitamins and minerals, and massive doses of Vitamin C all in an effort to boost my immune system.
I purchased every over-the-counter product claiming to "cleanse" the bowel of parasites including bentonite clay, sold as able to "attract and neutralise poisons in the intestinal tract, eliminate food allergies, food poisoning, mucus colitis, spastic colitis, viral infections including stomach flu and parasites". It only made me even more constipated. I tried charcoal tablets, psyllium, peppermint leaf tea, slippery elm bark, months of Hulda Clark's wormwood, cloves and black walnut tinctures. I even put together Clarke's Zapper which is supposed to electrocute parasites, except that mine didn't seem to be on the same wavelength. I munched my way through two bushes of Chinese Wormwood I grew in my back garden. I was even 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". By that time, about 6 years into the illness, I was past caring about adverse effects. My biggest fear was not dying, but having to cope indefinitely with such debilitating symptoms.
Ironically the only thing which had any affect at all, albeit very minor, was also the cheapest – garlic. I stank of course, but it was necessary for me to do anything in order to keep a lid on the symptoms and this helped a bit.
I had given up on natural therapies when in 2000 I came across two obscure Indian herbs touted as having anti-parasitic properties. I decided to make this my last foray into alternative medicine.
The company who sold the herbs online insisted that I had to have them prescribed by an Ayurvedic therapist. Ayurvedic therapy is described as a "Spiritual Health Science". It originates from India and places great emphasis on the mind as playing a role in health problems. That certainly sounded familiar! Nonplussed I booked in with one, hoping that this was finally the answer.
The therapist wasn't prepared to prescribe the herbs unless I tried his approach first. For three weeks I was to eat my meals in a "settled, happy state away from TV"; eat only when "empty"; drink ginger tea and rice water with cinammon and ginger; take daily oil baths and meditate twice a day – all for three weeks. I paid $150.00 and left, trying to bide my time until the next appointment where I'd have to pay a second time to have the herbs prescribed.
After four weeks it was clear the treatment wasn't going to work. It was at this point, thousands of dollars poorer, that I gave up pursuing alternative therapies.
Anyway I had run out of things to try.
Help at last
By late 2000, after a break of almost two years, I consulted another GI specialist.
As I sat in the waiting room clutching my manilla folder full of D.fragilis research, I tried to imagine a miracle - that this specialist would finally be the one to change the course of my illness. I hoped he would agree to testing according to guidelines in the medical literature to find out if I still had parasites, and if I did that he would treat them properly.
However, like all the others he had absolutely no interest in the positive D.fragilis result from 6 years earlier, or the research I still carried around hoping someone would see its value. The specialist went through a list of possible reasons for my condition - long bowel syndrome, IBS, etc. As I sat there listening to him drone on without addressing the infection, and feeling particularly unwell that day, I snapped at him "Why haven't you mentioned D.fragilis". It was the first time I had ever lost my temper with a specialist. Obviously angry with me, another difficult patient, he denied my request to have three fixed samples tested. Reluctantly he allowed two - but he was adamant that there was to be no fixative. I left his office clutching the request form only to discover when I reached the hospital lab to pick up the jars that he had authorised testing of only one sample. After a phone call from the lab he agreed to two samples – definitely no fixative.
Two days worth of samples, duly submitted within one hour of evacuation as requested ('hot' samples), were cultured and examined by one of Australia's foremost parasitologists Graham Robertson.
Four days later the gastroenterologist rang to tell me the result: Negative. Neither was he prepared to see me again.
So now I had a negative result by a parasitologist well trained in the art of diagnosing D.fragilis and Blasto. Luckily for me I had read the literature and was aware of the problems of false-negative results due to intermittent shedding of parasites in the stool, a problem which receives scant attention. I also knew that fixative is an essential component if D.fragilis and Blasto. are to be diagnosed at all, so I wasn't convinced by the result.
I decided to make one last attempt at finding medical help. Specialist No. 7 was Professor Tom Borody. However, the first appointment went the same as all other specialist appointments over the past 7 years. Dr Borody didn't believe that D.fragilis is pathogenic, explaining that he had told another patient with D.fragilis the same thing just last week.
Roughly one month later, I was in the middle of a particularly bad flare and lay on my bed sobbing in despair at the life I was being forced to live. I was helping others get better, but I couldn't achieve that for myself. Emotionally I was very close to cracking. Putting on a front day after day when you are wracked with symptoms is absolutely soul destroying having to deal with the raging war going on inside everyday which no one has a clue how to help. I often wanted to scream in despair and at the injustice of not being able to get the drugs I needed to cure me. All I wanted was the right tests done to see if D.fragilis had survived the past 7 years. I needed a doctor who was prepared to read the literature and work out a good treatment. It was a big ask.
Anyway, seeing me in such a state my dearest friend, without whom I would never have survived such a terrible illness, encouraged me to write to Dr Borody to ask for a bowel resection to end my misery. In my letter I acknowleded to Dr Borody that he thought D.fragilis is harmless. I didn't want to upset a doctor who was prepared to help me. I asked him if he would therefore perform a bowel resection because my symptoms were so disabling I simply couldn't go on much longer. This really was my last hope.
A few days later, at the urging of my friend because I didn't have much faith in doctors, I phoned the clinic to find out if the letter had arrived. It had. I was booked in to see Prof. Borody that day.
As I sat down I said "I know you don't believe D.fragilis is a pathogen...", again not wanting to upset a doctor who was prepared to help me. The idea that D.fragilis is a pathogen was EXTREMELY controversial in 2001. Prof. Borody surprised me by starting to look up D.fragilis on the internet, so I suggested he look at my site, as it contained most of the published research plus anecdotal evidence of recovery with the right drugs. I held my breath as he read. This was by far the most interest any doctor had ever shown in the research. I'll never forget what happened next: He turned to me and said "I think you've got something here – this might be another H.pylori". I was lucky enough to stumble on the doctor who had formulated the triple therapy to treat H.pylori – a gut bacteria which caused as much controversy in the medical world as D.fragilis and Blasto. has.
It was a profound moment. The sense of relief was enormous as I realised that at last I was going to get the help I'd been searching for for seven years. Phew!
Dr Borody contacted a parasitologist for advice about diagnosing D.fragilis. By coincidence it was the same parasitologist who tested me a few months earlier when the result was negative. This time three fixed samples diagnosed not only D.fragilis but also Blastocystis hominis.
My search was finally over.
Prof. Borody treated me with a combination of Iodoquinol and doxycycline, a treatment recommended in the medical literature which significantly reduced my symptoms. I tested negative to both Blasto. and D.fraglis afterwards, but being aware that purging can increase detection by forcing parasites out of the bowel I submitted three purged samples. Blasto. was found and I was treated with Flagyl and Bactrim. The symptoms reduced further - but it wasn't a complete cure.
My life became bearable again. The intolerable burning sensation in my bowel died down. After 4 months I regained the 15 kilos I'd lost. Two very swollen lymph nodes in my neck shrunk to their normal size. I no longer felt dizzy, unwell, nauseas and faint every day. I could include carbs in my diet without the symptoms getting worse.
However, the infection left me my digestive system very sensitive to fruit and sweet carbs.
Although these treatments significantly reduced the intensity of the symptoms I still had flare ups. The difference was that these died down over a few days, after which I felt reasonably ok considering what I'd been through. When I did have flare ups I could still feel very under the weather but the symptoms were nowhere near as intense as before. I no longer had to manage symptoms every hour of every day and I didn't have to be terrified of what I ate in case it sent the symptoms spiralling out of control.
What I didn't get back was my eyebrows and eyelashes. They had turned a paler shade and thinned out.
Nevertheless it was a massive relieve that the worst was over.
Since then I've repeatedly tested negative, and a colonoscopy revealed minor inflammatory changes.
It took me another seven years to understand why I fell so ill, and why I never fully recovered, as many others have. As with much of my medical history concerning parasites this discovery happened quite by chance.