I was first diagnosed with diffuse Scleroderma in February of 1996. In March 1995, I found getting my rings on and off very difficult - my fingers were so swollen. Over the next three months my then present employer re-structured and I found out that my job no longer existed. Given the climate within the company I was not unhappy with this outcome. I was also training to walk a half marathon, and feeling positive about my life. I had until this point no health problems apart from the swollen fingers. My GP was baffled, my blood tests were clear. I finished my job at the end of June and decided on a three week trip to Bali, Perth and Melbourne. All went well until the last week when, arriving in Melbourne, I felt as though I had a severe case of influenza. I was so weak that it was an effort to do anything. Luckily I was staying with friends. Just carrying my suitcase into the airport took all my effort - it was so out of character.

I had landed myself another job before leaving on holiday, so on arriving home I had three days before packing up and flying to my new employer's head office for a week. I lasted only two days before flying home. My feet and ankles were all swollen and I was feeling very poorly. Another visit to my GP, who said I should take two weeks off before starting at my new job. My new employers were less than happy. After my two week break I started work and lasted until midday before telling them they could have their job. I had never felt so empowered. I felt my decision was the right one. In the interim my GP still couldn't fathom my health problems. I filled in my time working part-time at an art gallery I was involved with, and within a month applied and got my present job which has suited my health problems - life is full of surprises. Within two months of starting my new job I visited my GP to find a locum filling in who took one look at my medical file and promptly called a rheumatologist and made an appointment for me. Finally I felt I was getting somewhere.

By the end of October 1995, my feet ached and fingers/elbows/knees were painful. I never slept through the night, getting comfortable was difficult, my ankles suffered from edema, finding shoes that were comfortable was very difficult. I suffered from extreme fatigue. It was difficult walking up steps - I certainly could not bend my knees to kneel down in the garden, My fingers would not allow me to sew, they were so sensitive at the tips.

When I next saw my rheumatologist I was very depressed. She had me in a clinic within two weeks to find a diagnosis - this was two weeks before Christmas 1995. My family were extremely worried. I was all the time thinking of rheumatoid arthritis, and had been doing some research of my own - and had tagged scleroderma as a possibility. The medical book was so negative that I didn't want to think of the possibilities. Only three days into 1996, I was admitted to our local hospital with acute pancreatitis. I wondered what was going on and became very angry that my body should let me down.

My employer has been brilliant and work has played a role in my recovery in that I have remained active and also kept my mind occupied. In the early days of 1996, I would spend 30 minutes meditating in my garden before going to work. This would set me up for the day ahead. It was in early February that my GP called me up asking to see me - one of my urine tests appeared slightly abnormal. I would have been in his office for less than five minutes when he launched into a speech saying how serious this disease is and had I informed my family, and to cap it off quoted survival statistics for scleroderma patients over a five year span - I couldn't believe my ears, rallied myself and told him I could leave this surgery and be wiped out by a passing car, and wasn't life full of the unknown. He then replied that I had a good fighting spirit - I know now that he had referred to an older medical journal - and I have made a point of updating him on this disease by bombarding him with information. You soon learn to question and stand up for your rights where doctors are concerned.

Early on in 1996, I saw my arms develop hard skin plaques which drove me crazy because they itched. By May of 96, I was suffering from reflux and after a gastroscopy was prescribed Zantac (300mg). I also developed Raynauds - my fingers becoming very sensitive to extremes of hot & cold. My rheumy has tried me on d-penicillamine and Plaquenil - neither were successful. Also earlier on (Aug - Sept 95) my GP had me on prednisone. This did little to alleviate my symptoms so I gradually weaned myself off it.

The turning point came when talking to a nurse who works at my GP's surgery as well as running her own holistic health clinic, and we got to talking. I mentioned scleroderma and she passed onto me Dr. Brown's book, "The Arthritis Breakthrough", which I read over a weekend (June of 96). It offered hope and by coincidence I was to visit my rhuemy Monday evening. I took along the book - she was sceptical. At this point I was not taking any drugs apart from an anti inflammatory, the Zantac and painkillers . At the same surgery as my GP was another doctor already using the antibiotic therapy. I made an appointment and was started on the antibiotic therapy.

At the end of September 96, I celebrated my fortieth birthday having some IV's. I feel lucky to have the support of my rheumy, Sue, who has been very supportive and always there when I need her. I've been taking only 5 mgs of methotrexate since November (once weekly) and am closely monitored re any effects to my lungs, liver and white blood cell count. I have frequent lung function tests and recently had a CT scan to also check my lungs. My improvement I feel sure is because of the combination of the two. I will continue to gather information and keep track of new developments. I find the news letter "Hot News" from the UK very informative and full of helpful tips - it is published by the Raynauds & Scleroderma Association, 112 Crewe Rd., Alsager, Cheshire ST7 2JA, England .

My progress to date has been good. I notice slow improvements in my flexibility. I can now get through the day on only two painkillers, taken when my feet hit the floor in the morning (this is still the most painful time of day), a dramatic reduction compared to this time last year. My ESR (measure of the body's inflammatory response), also known as SED rate depending where you live, is back into the normal range. Most important of all is my attitude. I now think of a future whereas this time last year I only thought on a day to day basis. I have learned a lot about myself, accepted my limitations and have gotten on with my life. Don't put the lid on your feelings, talk about your fears. At my low moments I always found someone somewhere worse off than myself - and somehow it always puts everything in perspective. Early on I went through a process of "Why me? Why now? What if?" and "What next?" It was scary stuff, but after some time came a period of acceptance. I feel that my scleroderma is slowly going into remission and hope that the damage that diffuse scleroderma can inflict on my body is limited to what I now live with - fingers crossed that all goes well.

Update, November 2000.

In June of 1996 I started the antibiotic protocol and followed it through with a series of clindamycin IV's later that year - I ceased the antibiotics around about March 1998. So I had started the antibiotics within four months of being diagnosed with Diffuse Scleroderma.

After steady improvement over a period 1997 - 1999, I started a walking regime in earnest, and this has had some positive results in that my circulation benefited - my Raynauds improved so that attacks were less frequent. I always made sure that I was wrapped up warm as New Zealand winters are harsh, and my body gained flexiblity and strength which in turn increased my overall mental outlook. January of 2000 saw me participate in a fun walk of 10kms around some vineyards. I was so pleased with myself and have gone on to participate in other events.

I made a decision and stopped taking methotrexate as of 1st September 2000 and have not noticed any difference in my body. Readers please note that Dr. Brown does not recommend the use of Methotrexate. The choice of using this in conjunction with the antibiotics contravenes the protocol. It was a personal choice for me - you could say a rebel at heart - but also wanting to have a foot in both camps. The dose, a minimal 5mgs, none the less like most drugs there is a trade off, perhaps for me in the form of anaemia, my constant companion, fully explored by my three specialists - Ms Rheumy, Ms Gyno, and Mr Gastro ! They can find no cause which leads me to suspect the methotrexate and I will keep you posted re my bloodwork.

By the end of September I had changed my eating habits. I started food combining via a clinic, and they told me that I would find that my reflux would improve. I had some doubts but they were right. Within a three week period I experimented by not taking my Omeprazole and found that I did not need it, though intermittently I have found afterwards, some foods cause slight reflux but nothing as severe as before!

So folks I am drug free - the first time since January 1996! I feel great, I have the blood pressure of a 16yr old - my diffuse Scleroderma obviously in remission - now if only I could straighten my right hand little finger .... hmmmmm my next challenge.

Bye for now -

Carolyn McGillicuddy,
New Zealand.

You can reach me at mcgills@xtra.co.nz