DEBBIE, Sero-Negative Rheumatoid Arthritis
I feel incredibly privileged to be able to post my story on this website. When you can't bend your knees, make a fist with your hand, open a bottle of milk or play with your toddler, you need to hear some good news stories. I hope that my story in some small way gives people who are suffering from rheumatic diseases some much-needed hope. I know that the patient histories I read when I first came across the antibiotic protocol (AP) gave me a great sense of optimism at a time when I was incredibly despairing and uncertain of my future.
So, here goes:
I am 30 years old, from Melbourne, Australia, with an 18-month-old son. In August last year, whilst on holidays with my family and a couple of friends, I started to feel some pain in my groin area, which was preventing me from getting a good night's sleep. It went away after a couple of weeks and I forgot about it.
A few months later, in October, just before my son's first birthday, my whole body started to ache. I am a pretty intense person who needs to keep busy and at the time I was really pushing myself - looking after my toddler, doing a few hours of postgraduate university study each week, as well as some freelance writing work here and there, playing tennis, doing the mothers' group thing and undertaking lots of other activities with my little boy. With uni exams looming, I was lucky to be getting 4 - 5 hours sleep a night.
The day after Patrick's birthday, my body suddenly seemed to pack up. I could barely squeeze toothpaste out of the tube and changing Patrick's nappy (sorry ... diaper for all of the Americans reading this post!) was a real struggle. It hurt to hold a pen and write.
I went to a GP (not my regular doc) who sent me off for some blood tests and told me to come back in a week. In the meantime, she prescribed some Celebrex.
That week was hellish and I couldn't wait for my next appointment, to get some answers. Unfortunately I didn't get any. She didn't know what was going on, told me to keep up the Celebrex and said to come back in six weeks if I was still feeling sore.
Five days later I went to see my regular GP. She was extremely distressed to see what a bad state I was in and ran a host of blood tests. She told me she hoped it was viral and got me an immediate appointment with a local rheumy.
For the next month, I was in limbo, with constant blood tests and doctor's appointments. I was feeling increasingly despairing and depressed. I was up to about 400 mg a day of Celebrex by this stage and it wasn't helping a bit.
Finally I was told that I had a form of arthritis - most probably sero-negative rheumatoid arthritis. My GP and rheumy wanted me to go on prednisilone immediately to 'turn off the tap' of inflammation, with a view to starting a disease-modifying drug, possibly methotrexate, soon after.
I was horrified and asked about side-effects. The rheumy seemed to resent my questions and basically washed her hands of me when I said I didn't want to take the cortisone. She told me that the "problem" with people my age was that we thought we were invincible and that the worst thing that could happen to us was a cold or flu. She told me that I had a chronic health condition that was going to impact on my quality of life and that I would have a shorter life expectancy because I wouldn't be able to do any physical activity, leaving me vulnerable to a heart attack. I burst into tears and she kept talking all the while in this really detached voice, as though I wasn't even there! I felt like my life was over.
With the support of my wonderful husband, family and some great friends, I started to look at alternatives. I saw a naturopath who got me off sugar, caffeine and alcohol and a few other things, and started drinking lots of water (previously, I would go a whole day without drinking any water - horrifying when I think about it now!).
Although I could see a few minor improvements, I was still in a lot of pain and started to worry about doing long-term damage to my joints. At this time, I had massive nodules on my hands and my feet were extremely swollen. I didn't have much movement in my knees.
A few days before Christmas I saw my grandmother's GP for a second opinion and fresh advice - she said he was pretty open-minded and might be able to suggest some other approach to my condition. Unfortunately he said he thought very highly of my rheumy and that if she had suggested cortisone and DMARDs that she wouldn't be doing so lightly. He said if I didn't take her advice, I could potentially end up crippled. I felt as though I was on the verge of a panic attack and felt that I was going to have to go down a path I hadn't wanted to take.
That night my husband Paul went Christmas shopping. The stores were open 24 hours and he didn't come home until around midnight. The next day he told me that he had been at Borders book store reading up on arthritic drugs and that he didn't want me to go down that path - he was scared of the side-effects they would have on me.
On Christmas Eve he spent hours surfing the Internet and came across the Road Back site and rheumatic.org. Finally we had some hope! I was in tears as I read some of the stories and we couldn't wait to get our hands on Henry Scammell's book.
We posted to the Road Back bulletin board and to Christine Adlard and immediately had responses from three fellow Aussies.
They were so encouraging and positive about the prospects of AP working for me and recommended a doctor.
By late January we had an appointment with the AP doctor and a few weeks later I saw the naturopath she works closely with in Melbourne.
My AP doctor believes that diet is an intrinsic part of antibiotic therapy. She warned me that unless I was prepared to make comprehensive lifestyle changes, she couldn't help me.
In early February, I made some pretty radical changes to my diet - no wheat, no dairy, no products high in sulphur, no pork, and lots and lots of water. I also had to cut out salicylates for a month, and stay off sugar, caffeine and alcohol. At first I felt pretty down about it all ... what was left for me to eat?!!!
I got over this pretty quickly, however, when after 10 days of cutting out the wheat and dairy the nodules on my hands completely disappeared and the swelling of my feet drastically reduced. I also started to get some movement back in my knees. At this time I also started a homeopathic combination - 15 drops twice a day before meals.
On 17 February, I finally started the antibiotics! First up was erythromycin - 5 ml on Monday and Thursday mornings. Two weeks later, I added doxycycline (Vibratabs) - 50 mg on Monday and Thursday evenings.
Since then I haven't looked back! I am completely pain-free and symptom-free, except for some slight swelling in my left ankle for the first few weeks I was taking the Vibratabs.
Yesterday I saw my AP doctor and naturopath and they are thrilled with my progress. All signs point to remission!!!
I have more energy now than I have ever had - I can roll around on the floor with my son, wear high heel shoes and am enjoying life more than ever before! With my doctor's support and encouragement I have also started a new job, working two days per week. My mother and a close girlfriend recently told me that I look 23 years old!
At my initial appointment with my AP doctor she said I would have to wait at least 12 months on AP before I could consider having another child. Yesterday she told me that I could consider pregnancy in six months, if I felt I was ready! I feel on top of the world.
Now that I am feeling so great, some friends are asking me if I am going to stop the antibiotics or ease up on the diet. My answer is NO WAY!!! I have learnt enough from this website and other books to know that I have a lifelong health condition, and it would be stupid of me to become complacent. Thanks to the pioneering work of Dr Brown and other enlightened health professionals, I am able to keep this disease under control with antibiotics. I know that all medications have side-effects, but I am happy to live with what I consider to be minimal or 'safe' side-effects of AP, particularly when I consider the side-effects of the drugs that my rheumy was pushing.
I hope my story gives others out there some hope. I know that I would not have gotten through this without all of the wonderful people out there, who are so generous in sharing their experiences on the various AP websites.
I know that I have been very fortunate and that not everyone will have the instant results that I have had with AP. However, please stick with it and retain your hope - there are many people who were sick for decades before coming across AP and many have had significant improvements.
Good health to all of you.