I've been asked several times to write the story of my recovery from rheumatoid arthritis. I've been slow to do so, and the reason is, truthfully, that I've been selfish. I feel so good these days. I'm living my life again after a terribly painful interruption, and I haven't wanted to stop to share my story. But I remember how much these success stories helped me to hang on when I was so sick, and I realize that I need to take a few moments to share my experience.
It came on hard and fast in January of 1997. Started with a sharp pain in my right foot. And, within two weeks, it had "jumped" over to the other foot. Within another two weeks it had spread through my body like wildfire. It was in most every joint. I didn't know what was happening to me. I went to the bookstore and randomly picked two arthritis books. One of them (thank God) would change my life.
The Arthritis Breakthrough by Henry Scammell and Dr. Thomas McPherson Brown kept me awake all night. It made sense to me that my immune system didn't simply turn on me without reason. Infection sounded right. I had a constant low-grade fever and was fatigued. As I read the book, I felt that I had found the answer I was looking for, and I was excited to get started on the antibiotic treatment.
It wouldn't be so easy, however. I went to several doctors in my local area, including three rheumatologists. Each of them wanted to start me on immune-suppressing drugs. When I broached the infection/antibiotics subject, each of them adamantly told me that there was no truth to it. One of them actually began cursing Dr. Brown and told me that he had "written a book of lies." I left that appointment (and several others) in tears, thinking that maybe the doctors were right. Maybe I had been gullible believing what I had read.
I began to search the Internet for people who had used the antibiotics with success and, fortunately, I found them. I decided to fly 1100 miles to visit a rheumatologist experienced in this treatment. I remember calling first and asking, "Do you treat rheumatoid arthritis with minocycline?" They told me "Yes." I then asked, "Does it help people?" And they said, "Absolutely." After all of the negative doctor appointments I had endured, I actually hung up the phone and burst into tears - tears of joy. The journey back to health was beginning.
I started minocin in July 1997, six months after the onset of my symptoms. Dr. Franco (of Riverside, CA) told me to expect a herxheimer reaction (an initial worsening of symptoms due to die-off of the mycoplasma infection). He was right. I blew up like a balloon. I didn't have visible ankles for months, and my pain increased. I expected this, though, so I held on. Because of my age (31) and my relatively good health otherwise, I was told that it would take 6-12 months to get well. Unfortunately, that is not what happened.
For reasons unknown to me, my disease didn't turn around until 2000, nearly three years after beginning the antibiotics. A possible reason is my juvenile diabetes. Perhaps my immune system was already weakened, making it harder for me to fight off the infection. Regardless of the reason, those three years were very dark for me. My pain was excruciating day and night. My husband would have to lift me off and on the toilet. He would dress me also. I couldn't do any housework or bake care of my young children. I remember my youngest son offering one day to "teach me how to walk." I realized then that he couldn't remember me without RA, didn't know that I had walked just fine for 30 years, and it broke my heart.
My depression was off the charts. I had suicidal thoughts daily. I told my husband that it was horrible that they make humans live through this kind of thing. If I was a horse, I told him, they would have put me out of my misery long ago! I actually wrote my own obituary (control freak to the end!).
And then things began to change very slowly. I would find myself doing something and realize that I hadn't been about to do it for a long time. Little things at first and then bigger. Finally in the spring of 2000 I got a crazy idea and pulled my bike out of the garage. Months earlier I couldn't lift the telephone to my ear and that day I lifted a bicycle over my head. I was nervous, but I rode that bike up and down my street many times. I made sure to be riding when my boys got off the school bus that afternoon. Were they ever surprised!
I'm not completely back to my pre-RA self. I have some damage to one knee and one ankle. But my blood work is back to normal, and I'm happy to wake up in the morning again. I sometimes have a few moments of stiff joints in the mornings, but nothing compared to the hours it used to take me to get moving. I have never regretted for a moment traveling to a doctor in another state. It has been well worth every penny spent. I would strongly encourage anyone facing one of these rheumatic diseases to do whatever it takes to get on this treatment and get back to living.
You can reach me at firstname.lastname@example.org