Scleroderma is a strange disease. It sort of creeps up on you over time and you learn to live with the symptoms. I was 48, 4 years ago, when I was diagnosed, rather fortunately by a talented doctor during a routine medical. I had written off the stiffness in my hands as mild arthritis and while I wasn't feeling well, in general, thought that age was catching up with me. After blood tests revealed the truth of my condition, I was packed off to a rheumatologist. Then began the conventional medical treatment plan, principally of methatrexate injections as well as medication for ulcers and reflux. I must confess, I didn't take the condition very seriously at the time, although my wife, who had researched the condition, was very concerned. To me I had stiff hands and wrist joints and dry hard skin on my forearms and too much work to really think too much about it.
A routine CT scan two years later revealed some lung involvement and as a result, the rheumatologist suggested a course of chemotherapy to start in November 2007. To this end I even had a port inserted in my chest so that the treatment could be administered directly. After endless rounds of blood tests, the sight of a needle heading for a vein in my arms was something to be avoided. At this stage I was feeling poorly, the skin on my arms was dry and hard and even started to develop 'scales'. We were planning a holiday trip to London and I actually contemplated that I needed a walking stick to help me get around.
Mentally I was grappling with the medical belief that my auto immune system was damaged and was to blame for giving me this condition. I was not happy with taking chemicals to suppress my immune system, which in general seemed to me to be doing a great job of sorting out the everyday scatches, colds and other minor ailments. It didn't make sense to suppress my immune system to supposedly slow down the scleroderma, and then open myself up to any other infection that would come my way which I could not then effectively fight off. I also felt that two years of methatrexate had not relieved or improved my condition, in fact I was progressively getting worse and feeling tired and rundown.
In her research my wife came across your website and after reading the testimonials and the research findings, everything made a lot more sense to me. There was nothing wrong with my immune system, I just had a microbial infection that it was not equipped to deal with. All it needed was some help. I discussed my desire to attempt a new treatment protocol based on a long term antibiotic with my rheumatologist. This was a major mental leap for her as she was in the process of prepping me for the chemotherapy. To her credit, while my strategy was against her training and everything she believed in, she agreed to support me in this new treatment plan. This was brave as she works at a university hospital that has a special research programme treating patients with auto-immune diseases.
The pulmonologist was very resistant, but conceded that medical science had little to offer in the way of a proven treatment protocol for scleroderma. My reasoning with the pulmonologist was based on comparing the two alternatives. On the one hand medical science is offering a chemical treatment programme that has no proven success other than to hopefully slow down the progression of the disease by what I considered was a strategy harmful to my body. This compared to an antibiotic protocol that had a website with a whole bunch of testimonials from people for whom the treatment had made a big difference. He eventually also agreed to support my new treatment strategy on the basis that should the treatment not work for me, my lung condition was still a long way from being serious.
In January 2008, after a six week period to flush the methotrexate out of my system, I commenced a low impact treatment of 100mg of Cyclimycin per day. There were no intravenous infusions of large 'starter' doses, and thinking back, I wonder sometimes whether the doctors allowed me to start on this 'slow' basis thinking that the lack of early results might convince me that the treatment did not work. Just being off the methotrexate made a big difference. I was no longer feeling tired and this was an immediate boost.
Over the past year, as the pains in my knee joints and hip joints slowly disappeared. As the tightness in my back and the muscle stiffness in my thighs relieved. As the skin on my neck and chest that I had never really recognized as having limited my movements suddenly reverted to what I now know as normal. As the skin on my arms regained a measure of softness, but more importantly the hard scales disappeared. As my lung function tests showed a significant improvement. As I regained energy, along with improved movement in my fingers and wrists, I have come to realise just how scleroderma had crept up on me and had affected much more than just my hands and arms. It had taken over my body. Happily I can say that after one year on my antibiotic I am today really well. I know I will never be cured, and my crooked fingers are here to stay, but I am glad to be back.
Now my thoughts no longer are filled with how I can cope with a debilitating disease. From time to time I spare a thought for my doctors and wonder how they are coming to terms with the serious challenge that I have presented to the protocols that they learnt during their medical training. I wonder if they have had the courage to try the antibiotic approach on their other patients suffering from that faceless and undefined condition they call 'auto immune disease'.
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