I was first diagnosed with RA in November of 1990. For nearly one and a half years before this I had experienced a lot of pain in my hips which I attributed to a poor mattress in my college dorm. Then in the spring of l989, I started having a lot of pain and stiffness in my right wrist. A blood test showed an elevated rheumatoid factor.
At the end of the school term in May, I came home and saw a rheumatologist who could not confirm RA but thought there was a good chance I had it since my grandmother had suffered with the disease. He injected the wrist with cortisone a couple of times which helped quite a lot although it was not a long term cure. I tried one NSAID after another, and finally began secondary level drugs (oral gold) in January 1991. With some success but not complete remission, I then began gold injections in the spring of 1992. Although I was doing somewhat better, I had new joint pain cropping up and my overall pain level was increasing. I was trying to exercise more and walk to class instead of driving to keep from getting so stiff. I had once enjoyed dressing up for class. Now I was wearing tennis shoes, minimal makeup and did very little with my hair. The pain in my hands and feet prevented me from doing even the most routine tasks.
Since the gold shots didn't seem to be having much effect, I stopped those the winter of 1992. By the end of 1992, my doctor had prescribed methotrexate, Plaquenil and Clinoril. When I did not respond to these very well, he wanted to add the oral gold back to the regimen with the methotrexate. My family and I decided we did not want to do this. The drugs I had already taken individually had caused so many problems that I was very concerned about their effects if they were combined.
My family and I had been praying diligently for my healing and felt assured the Lord was going to deliver me from this disease - even though I just kept getting worse. In February of 1993, we were introduced to Dr. Brown's book, "The Road Back". My mother read the book from cover to cover and then sent it to me at school. She was convinced this was the Lord's answer to our prayer. The people whose stories were outlined in Dr. Brown's book were so much worse off than I was and I tried to deny that I would ever be that bad. I was put in touch with another young person who was on the treatment. This offered new hope, even though it might be a very long journey if it followed the normal time table.
We discovered my rheumatologist had already treated another RA patient with antibiotics and that patient was doing extremely well. When we approached him, he tried to talk me out of it saying that it was probably a fluke that his other patient had improved (or he wasn't absolutely positive that patient had RA), and since it was not approved by the American College of Rheumatology, he wasn't comfortable with the treatment. He thought I would be much better off with methotrexate and gold combined. Since we felt certain the Lord had led us to the antibiotic treatment, I told him I would just go to another doctor. He finally agreed to try it for a while but told me if I had any complications we should stop it immediately. He also stated he would only give me the antibiotic if I stayed on the methotrexate. I started with 200 mg. of doxycycline every day. For one week I felt like a new person. I could even run up the stairs! Soon, however, I went into a Jarisch Herxheimer reaction as explained in Dr. Brown's book. It is hard to imagine feeling any worse than I did at that time when I was trying to finish my final semester. There were weeks I didn't know how I could stand the muscle weakness, dizziness, depression, fevers, joint swelling and pain. My hands would lock and I had to pry my fingers up. Then my neck started locking up. To say I was scared is an understatement. Going to class was nearly and often impossible.
Mother talked to the support group leader who had introduced us to this therapy. She shared that Dr. Brown had discovered that the offending microorganism responded just as well to low doses of the antibiotic and discussed with her some of the ways other doctors were prescribing. We decided to drop back to 100 mg. of doxycycline daily. It was then I realized how essential the correct dosage is. Too little was ineffective, too much would make me feel terrible.
I saw my doctor again after the fourth week on the antibiotics. He reluctantly agreed to refill the prescription but wanted to increase the methotrexate. Although I didn't tell him, I kept the methotrexate at 7.5 mg. a week, but stopped the Plaquenil. My prescription for the methotrexate ran out in mid may 1993, so I didn't get it refilled. Consequently, by the end of May, I was on 100 mg. of doxycycline Monday, Wednesday and Friday, and 600 mg. of Clinoril daily with a bit of prednisone for flares.
At the end of May 1993, I saw another doctor who had experience with this therapy and he added 500 mg. of ampicillin to the regimen when he discovered I had an elevated ASO titer. The best thing about my trip to see this doctor was his total acceptance and approval of the treatment. He was so matter of fact about its benefits.
In December of 1993, my rheumatologist reluctantly agreed to let me start intravenous treatments. I started with 300 mg. of Cleocin for two days, then 600 mg. for two days and finally 900 mg. for two days. Since that time, I've had 900 mg. of Cleocin once every two weeks. I've seen tremendous improvement since starting the IV treatment and feel that I turned the corner the end of March 1994.
Most of the time I feel almost normal now. I knew God had brought this treatment into my life, but the pain often overshadowed my faith. If it had not been for my family and the support group leader supporting and praying for me, and encouraging me not to give up, I might not have stayed on the treatment to see its effectiveness. My hope is that when you read this you will realize that God has a plan for you. Your road to recovery may not look like the one I took, but He has a road back for you, and you can trust that no matter how badly you feel.
God has orchestrated the people and events to my road back. I still struggle with an occasional flare, but my outlook is good. The fear is gone. I'm able to work a 40 hour week and keep a very busy social schedule. This is such a contrast to the months I was barely able to get out of bed. All the nodules that had developed on my hands and feet are gone. The annoying cough I had from nodules in my lungs is gone. Although I'm still not totally through all of this, I now feel I can look to the future with hope and confidence.
You can phone me on US 713-355-1712