"I consider myself very fortunate. Thanks to the author of this site, this specialist was alerted to the effects of D. Fragilis. You will probably find resistance to a D. Fragilis diagnosis and treatment, but you should persevere. This site contains a wealth of information which your GP and your specialist can use to educate themselves if they are so inclined"

I am 43 and run my own computer business which employs around 20 people here in Sydney's inner-west. My health has always been good, sinus problems being my only problem growing up.

In 1992 I decided to start my own business. This was very stressful, especially in the first few years, and I moved into an unrenovated house at the same time - adding to my stress.

I recall many nights with my stomach tied in knots wondering whether I was ever going to make a success of the business. And I wasn't really surprised when, some time in 1994-5, I developed persistent diarrhoea. I put it down to the effects of stress and ignored it.

However, I have an analytical mind and I noted that my bowel movements were not always very loose. Sometimes they were quite normal (though not often). Over a long period of time I determined that drinking red wine (as long as I didn't have white wine) often helped, though not always… I tried restricting my diet - I tried a fruit-only diet for a couple of months, lost a lot of weight (no alcohol either) but my bowel movements didn't change.

Over the years I developed severe cramps in the bowel each morning (when you've got to go, you've REALLY got to go). This resulted in explosive bowel movements with lots of gas.

In 1998 I put my hand through a glass window and was admitted to RPA for microsurgery. I was in Friday night and out Monday night. In the meantime I was on an antibiotic drip and had several shots of pethidine (fabulous stuff)… For two-three days afterwards my bowel movements were absolutely normal. No cramps, no diarrhoea. Then, just as quickly, everything returned to "normal" and the symptoms returned.

In June 2000 I took a month off work and travelled to Italy with my partner. We had a very enjoyable and relaxed holiday, did lots of walking and sight-seeing. But there was absolutely no change in my bowel movements. Every morning I had cramps and explosive or loose bowel movements.

When I came home I saw my GP. My Grandfather had bowel cancer and I decided that, whatever was causing my symptoms, it wasn't stress or diet. I was referred to a specialist, a Professor attached to RPA (a major teaching hospital in Sydney). I had an endoscopy and a colonoscopy. I got a clean bill of health but no answer for my diarrhoea. This was put down to food intolerance or allergy and I was sent away (in a kind way) to live with it.

Although my symptoms were not so severe as to prevent me working or enjoying life, they were annoying and inconvenient to say the least. My bottom was so irritated that I had to use moisturiser or baby cream when wiping, and there was often local bleeding - sometimes, quite a lot of bleeding. This meant I was always a bit worried I would get caught out and I carried a tube of Savlon (antiseptic cream) everywhere…

Over the same period I had also developed repeated infections of both the bladder and the prostate. Tests showed no reason for either and they responded to treatment with antibiotics, though the prostate infection took ages to clear. I now drink cranberry juice daily (after reading in New Scientist that someone had isolated the ingredient in cranberries which prevent infection in the urinary tract) and have had no further problems.

I also developed Cheilosis - severe cracking of the corners of the lips - at Easter in 1998. This remains to this day and I have to use a lip salve to prevent the cracking.

I had one major allergic incident which, out of the blue, resulted in hives. Ever since I have noticed that, when I get stressed, I get a bit asthmatic. It passes, and is not as bad if I have been going to the gym regularly. But I did take antihistamines daily for almost a year.

After the inconclusive tests I decided that there must be a reason for my problem and went back to the GP to get a second opinion. I was referred to another specialist - someone who "thinks outside the square". I had already decided that if this didn't result in something concrete I would start seeking alternative therapies.

I couldn't get an appointment for 8 weeks. In the meantime, I read an article in the paper about people with intolerance to wheat. The symptoms experienced by people with this intolerance seemed to closely match mine. So I stopped eating cereals, bread and other wheat-based products.

Overnight my symptoms stopped - in fact I became constipated!

I nearly cancelled my appointment with the second specialist - but went all the same.

The second specialist asked me about my symptoms and became very interested as I described my problem. I explained about the wheat and he told me he felt that this may have worked because it had denied the bugs their favourite food. He told me that he had recently become interested in a particular parasite which caused these symptoms and he felt my symptoms could be attributed to this bug and that it could be effectively treated. He showed me some emails from a Professor in the UK to whom he had written about this particular bug. The UK Professor mentioned an excellent website set up by an Australian - this site in fact. This specialist was very open about the fact that this was all very new.

Anyway, he sent me away with some sample bottles which I duly sent back. There are two important things to note about the samples. Firstly, I was asked for two samples - the first was a traditional sample and was sent to a traditional lab. I guess this was tested for the normal bugs. The second sample bottle contained a clear liquid which was explained to me as a fixative. I understood that some of the bugs did not survive long in a standard sample due to the activity of the normal bacteria. So, the fixative killed everything before the bacteria could munch up the bugs he was looking for, D. Fragilis in this case. The second key point is that most labs do not test for D. Fragilis. My sample was sent to a Sydney university where it was screened specifically for D. Fragilis.

The results came back positive for D. Fragilis and negative for anything else. The D. Fragilis numbers were quite low (I was still on the wheat-free diet) but there nonetheless.

I was prescribed a course of two drugs: Doxycycline and Iodoquinol over a 20 day period. The Doxycycline seems to have been quite a low dose (according to my pharmacist) and the Iodoquinol was apparently imported from the US and made up locally. Anyway, it was expensive - $100 for the Iodoquinol capsules direct from the specialist.

After three days the cramps disappeared. Over the next 20 days most of the other symptoms went as well. My bowel movements returned to normal, the gas disappeared and I had no cramping. I went back on wheat products after a week.

After 20 days and the end of the Iodoquinol I stopped the Doxycycline as instructed. The last remnants of tummy discomfort went away quite quickly and my bowel movements remained normal.

After two weeks I sent another set of samples, as before.

Yesterday, after nearly 3 months, I had a follow-up visit with my specialist. The D Fragilis has been eliminated and I have no further symptoms. My very excited specialist told me he had been successful in eliminating this bug with this drug combination in every case so far. He reminded me that had I come to him before November 2000 he would have diagnosed irritable bowel.

So, after 6 years, my system is normal again. And I was cured so easily once the diagnosis was made. I still have the cheilosis and my reaction to stress is still the same. I haven't had any more bladder or prostate infections but it is early days.

It has been fun to be part of something new, but I have been more excited by the way in which the web empowers individuals who are prepared to take responsibility for their own health. I don't mean me, in this case, since I am just a lucky beneficiary of someone else's hard work. But this site, and others like it, mean that individuals can research their own problems and can seek other opinions with relative ease.

The UK Professor, replying to my specialist's enquiries about D. Fragilis, made reference to the fact that is was somewhat humbling to be confronted by a patient with significantly more knowledge on her disease than the doctor. I think there are lessons here for all health professionals - patients can now inform themselves and some patients are going to come to appointments very well armed indeed.

I consider myself very fortunate. Thanks to the author of this site, this specialist was alerted to the effects of D. Fragilis. Thanks to the web, he was able to seek other opinions and obtain supporting information quickly. Happily my specialist was open to new ideas, and receptive to the idea that a patient might know more about her problem than him.

This site is accessed by people all around the world.

You will probably find resistance to a D. Fragilis diagnosis and treatment, but you should persevere. This site contains a wealth of information which your GP and your specialist can use to educate themselves if they are so inclined. If your doctor is uninterested, find another doctor. As a patient you have two hurdles - the first is to get a proper test done, using a sample taken with a fixative so that the D Fragilis, if it is there, will still be present when tested. Once you know you have D. Fragilis, you need to find a doctor who will treat you with the drug combination Iodoquinol and Doxycycline. Don't give up! If you are really finding it difficult, perhaps you might try approaching your nearest university - you may well find that the teaching staff are more open to new ideas than the practising specialists.

To the author of this site, I say not only thank you but congratulations - medicine may never be the same!

2000