my story

Hello and welcome to StopAS, a website created to help publicise the extraordinary work of Professor Alan Ebringer, who dedicated many years of his life into researching the cause of Ankylosing Spondylitis (AS).

His research with his team dates back to the early 1970’s with the production of over 100 scientific papers being published and studies carried out across 17 different countries.

He has now retired, but as a former patient and sufferer of AS, I’d like to give something back by promoting his work and trying to help some of the millions of people suffering worldwide at the hands of this debilitating and painful disease, to get their life back, just as I did 18 years ago.

Unbeknown to me, I first started suffering from AS during my teens and despite numerous trips to the Doctors my symptoms were put down to nothing more than growing pains, although I now believe this was probably the early signs of AS. I was always very active, but as I approached my twenties my joint and tendon issues became increasingly prominent.

By now my lower back was a constant source of pain, but gradually this progressed to include severe arthritic pain in all my major joints; Feet, knees, wrists, hands, hips, neck and then if this wasn’t enough, I began to suffer from Uveitis, which is an extremely unpleasant and potentially dangerous eye condition. Clinically, I also had elevated erythrocyte sedimentation rate (ESR) and c-reactive protein (CRP) levels.

Quite often at the start of an AS attack, I would experience flu like symptoms, which would then subside for a day or so before my joints would just flare up, like an internal explosion! My back would be so stiff in the mornings that I literally had to roll out of bed – I really was in trouble.

I saw my Doctor who referred me to see a Rheumatologist. In fact, I saw many Rheumatologists, but they struggled to provide a diagnosis. I was told it could be Rheumatoid Arthritis, Reactive Arthritis (Reiter’s Syndrome), Psoriatic Arthritis, Gout or Fibromyalgia to name but a few. Furthermore, I was told on one occasion that I could probably end up in a wheelchair by the age of 30.

The only treatment available was anti-inflammatory drugs, but when I looked into the potential side effects, I decide that long term this route wasn’t for me. 

Determined not to accept my fate and with a steely determination, I set about researching my symptoms and getting to the root cause of the problems.

Meanwhile my condition continued to worsen, almost being hospitalised on two occasions. If I managed to get into work in London, I had to get taxi’s to and from the station and wore slippers, as my feet were so tender. My weight dropped dramatically, as I continued to be ravaged by the inflammatory process. As much as I didn’t want to, I had to take some anti-inflammatory drugs just to give myself a break as the pain was like nothing I had experienced before – this really was a living hell!

I looked to alternative medicine and went to see numerous practitioners specialising in; Nutrition, Kinesiology, Iridology, Acupuncture, Homeopathy, Chinese Medicine, Reflexology and Reiki to name just a few. However, whilst some treatments definitely gave me some short-term relief, nothing seemed to provide me with a permanent solution.

I also spent a lot of time having various allergy tests, and embarked upon elimination and anti-candida diets, all under the guidance of the late Dr John Mansfield who ran an Allergy Clinic in Surrey. Once again whilst the extensive tests and treatments provided by Dr Mansfield definitely addressed some of my other non-arthritic issues, (tiredness, bloating, fungal problems, dry skin etc), I was still struggling to find answers to my AS.

I was at least 10 years down the line now and I got to the stage where I had to sit down with Dr Mansfield and say, “what you’ve done has been great”, but it hasn’t resolved my main issues so where do we go from here?

It was at this point, that Dr Mansfield mentioned that he had heard about someone called Professor Alan Ebringer who was based in London and had been studying the cause of AS.

I set about finding Professor Ebringer and made an appointment to see him at his practice within UCL in Tottenham Street London W1. On the day I arrived and sat in his waiting room, I looked around at the other ravaged victims of AS – it really was a sorry sight and something I will never forget!

Professor Ebringer took x-rays of my Sacroiliac joints to review any inflammatory changes and further checked my ESR and CRP levels. We talked about the lower back pain, the need to “roll out of bed” in the mornings and the attacks of Uveitis. Upon getting the results of these and the fact that I was HLA-B27 positive, he was finally able to diagnosis Ankylosing Spondylitis (AS).

He then went on to explain that his studies showed that 96% of AS patients were carriers of the HLA-B27 gene, but it was found in only 8% of the UK population, with a similar frequency found in the USA. It would appear that there are over 30 million individuals globally who are HLA-B27 positive and suffer from either AS or early stages of the disease. However, I suspect the number is considerably higher when you take into consideration all those that remain un-diagnosed?

When the Consultant Rheumatologist who had provided the funding for the studies into AS was told that his AS patient’s condition was caused by Klebsiella, he declined to appear on the paper with the gruff reply “Nonsense, nobody would believe it”!

Also, it was discovered that AS patients had antibodies against Klebsiella which resides in the gut. Essentially, when a patient is infected by Klebsiella bacteria, his or her immune system will make antibodies against all the antigens or molecules found in the microbe, but because some of the bacterial antigens resemble self-tissues, the anti-bacterial antibodies will attack not only the bacteria but also the self-tissues such as joints and the cells having the same HLA molecules, which is how AS starts. This is the concept of molecular similarity or “molecular mimicry”, hence the auto immune process begins.

Therefore, it was revealed that AS was caused by Klebsiella and so a very large percentage of people with HLA-B27 will go on to suffer some symptoms of AS, which can vary considerably from patient to patient.

When I asked what could be done to reduce the bacteria in my body, the answer was ridiculously simple; Deny the bacteria its food source, by adopting a low starch diet, their numbers will subsequently reduce, and your AS symptoms should disappear!

I immediately reduced the starch intake in my diet and within 3-4 months I had the most incredible feeling of “getting my life back” and after 9 months all of my symptoms had disappeared!

I have now been symptom free for the past 18 years and have not taken a single anti-inflammatory drug in this time. I lead a very active life playing racket ball, mountain bike riding, yoga, skiing in the winter and practice Wing Chun Kung Foo.

If you’d like to take control of your AS and find out more, please contact me to arrange a mentoring appointment.

Read my article in What Doctors Don't Tell You Magazine.