I sometime sit in wonderment at how many years I have suffered with this disease. I am now 38. My story starts in 1981 I lived in South Africa and was 17 a budding ballerina at the school of the arts in Johannesburg. I always had a weak immune system caught everything and was very thin and sickly. this day in September was the start of many years of searching for what it was I was suffering with. I collapsed at school was rushed to hospital. I woke up a few days later to find that I had lost half of my genitals due to gangrene and due to the pain had lost my memory of it all. Eventually 2 years later I was diagnosed by the professor of Prosthedontist at Wits University who excitedly told me I had Behcet's disease and that he had not seen a case of "me" for thirty years. Talk about feeling like a freak. He and I invented a dreadful treatment for my mouth ulcers which could grew to the size of a small coins. Because I wanted as little cortisone internally as possible we decided to inject each ulcer separately. cortisone is very milky and thick substance and we had to find the smallest needle possible still allowing the liquid through. Oh by the way I was allowed my choice of swear words while having these injections!( on your marks, get ready, *&%@(*)*_ cuss cuss!)
I have spend half my life on Meticorten or prednisolone 20 years in fact, 10mg per day reducing to about 7 mg if I dropped further I would break out with about 15-30 mouth ulcers. And then for the the effects of cortisone! I got osteoporosis, was treated with Fosamax in the trials for 1 and 1/2 years, I was a meanie mentally with cortisone madness in my head at many times. However one saving grace was that I remained painfully thin instead of growing fat and believe me my appetite has to be seen to be believed and I weigh around 48- 50 kilos at 168cm tall. My saving drug was an anaesthetising ointment called dyne, I would numb the mouth and have a quick meal,(Xylocaine is great here in Australia- 7-20mg). My kids ear, nose and throat specialist would give me anaesthetics down my throat if I had oesophageal ulcers (definitely the worst pain of any of the any ulcers I have experienced- cant even swallow water) then I could easy again. My new Professor here in Australia suggests Dexmethsone tab 4mg to gargle with 2x daily and this really does shorten the life span of the ulcers if you suffer in this way.
I also had plastic surgery years later to reconstruct what the gangrene had destroyed and have a normal marriage and 2 very healthy kids, I am wonderfully well pregnant, more cortisol in my system of course but having the babies is a pretty dicey experience as I have had septicaemia with one and abscess and blood clots with another. But it does not end there. I have been hospitalised over 25 times, and if I do get sick my weight drops drastically in a matter of 1 week I can loose up to 9 kilos and dehydrate. I have suffered with almost every lesion Behcet's disease has to offer including my eyes , but mildly thank God and many of the skin lesions.
A year ago I eventually managed to come off the corticosteroids and I feel wonderful. I was warned not to do this by all the professors here in Australia and I did not do this with out great consideration and support homoeopathically. Firstly this disease is supposed to burn out after a few years and it did not seem to be doing this with me it just seemed to keep changing its lesion. Then one day I got a simple mycoplasmic pneumonia and landed in hospital for 6 months and in bed for another 6 months and coughed for 2 years , you can imagine the horror of it all. Simply I had to get off cortisone as it had caused an immune system crash that I was not prepared to go through again. I dropped milligram by milligram month by month taking me over 3 years from before my lung illness to way after. The pros and cons of cortisone are such that it begins to create worse effects than we are actually suffering from already.
I like many others in my desperate quest came upon homoeopathy, it saved my right lung not only did I have pneumonia but it developed into pleuracy and during one of the endoscopies I picked up aspergillus a nasty little fungus with no cure but to remove that portion of the lung. I was given Ruberkehl a German homoeopathic product made from the fungus itself (aspergillus ruber 6x)and when my blood was retested after 2 weeks there was not a trace of this fungus to be seen. Doctors tried to dispute the facts saying it must have been a laboratory mess up and that I never had this illness. I had fortunately had 2 blood tests not just one proving them incorrect. The doctors were amazed and thrilled, but I do tend to look for open minded doctors or homoeopaths who have medical degrees too, I am a little fussy after all my years experiences. I then developed a lung abscess and in desperation the doctors just wanted to remove the middle lobe, I refused and went through the worse medical experience of my life pain wise, my choice was a general anaesthetics to remove the abscess and surgery to get to it, or inserting a tube under cat scan while wide awake, I chose the later, was "stabbed 5 times to find the spot" and it fell out 24 hours later and we had to repeat, not something I would recommend. I was then nicknamed mrs Murphy (you know Murphy’s law). Two years later I have 85 % function back in my right lung all thanks in my case to Phosphorus one of the great homoeopathic remedies. I am now a student in final year homoeopathic medicine and although I do get very ill from time to time I am for the most part much better than I have ever been.
I just wish when I had found out that I was the only person in my country with this disease that it was the case , but I find out year by year how many of you out there have had to suffer with the same, I wish you all the light and love and great health you deserve and remember no illness is with out a mental and emotional partner that goes hand in hand with the physical. The body is a whole being and each part of the body represents a different part of our conscious and sub- conscious minds. for eg. lungs problems represent great grief and heart ailments represent the inability to express love, blood conditions may be a blockage not being able to let go of past issues, throat problems might be the inability to express ones self, ears= not listening to our better judgement etc. which is yours? When we clear our stuff we find piece, tranquillity and self fulfilment not to mention the commencement of great and long lasting HEALTH
With Love