I guess to begin at the real beginning, I have to start telling my story from my childhood. My mother tells me that as a baby I had problems with allergies. I can remember taking antihistamines from the time I was about 3 years old. I also had a lot of infections-especially from strep. From the time I was quite small until I had my tonsils out at the age of 14, I had strep throat 3 or more times a year. My sister and I seemed to trade it back and forth throughout our childhood.
About the same time I had my tonsils removed, I went through my first series of allergy tests and shots. I was allergic to almost everything on the test, and was given 3 shots twice a week. This lasted for a little over a year, when I had an anaphylactic reaction to the shots. As an aside, I tried allergy shots 2 more times, each time about 10 years apart. I had the same type of reaction and finally gave up on this type of treatment. During my early twenties, I was given penicillin to treat what turned out to be mononucleosis. I had hives, and was told never to take any type of penicillin drug again.
During my mid twenties, my left knee would suddenly hurt for a few days and just as suddenly stop hurting. At the time I was a professional photographer and carried quite a lot of equipment around. I blamed the sore knee on my camera bag. This continued for a year or two, happening every 4-6 months.
In the fall of 1985, when I was 27, I noticed that my left thumb was hurting. I had to turn on a heavy circuit breaker when I opened my office each morning, and I decided that this was making my thumb sore. I switched hands, and soon both thumbs were hurting. I didn't put it together at the time, but my jaw was also hurting, especially at night. A few weeks later, my left knee started to hurt again. I ignored it for a while, but one day I went to a co-worker and told him my knee was hurting, and asked if he thought it looked swollen. I raised my skirt to show him both knees, and he said, "Get to a doctor right away!" Little did I know that my left knee was swollen 2-3 times its normal size.
I had a lot of friends that had knee pain, had surgery, and then felt fine. I "self-diagnosed" myself and decided I needed surgery. So I went to an orthopedic doctor. I told him about my knee, and then added, "While I'm here, I have some other things I'd like to show you." I told him that my thumbs were hurting because of the circuit breaker, and that my jaw was hurting because of stress. He drained the fluid from my knee, gave me a cortisone shot, and handed me a prescription for naprosyn. I took the naprosyn for 2 days. It instantly took all the pain away. It also made me realize that I didn't hurt just in my knee, thumbs and jaw. Every joint in my body hurt! It had happened so gradually, I didn't even realize how bad it had become. Taking all that pain away was a shock. Unfortunately, after 2 days on naprosyn, I began to bleed internally, so I had to stop taking it. The pain came back in full force. It felt so much worse, because I had no time to get used to it gradually.
When I went back to see the orthopedist, he told me that he needed to send me to a rheumatologist. I didn't even know what one was! I had to ask. When he told me it was a doctor who treats arthritis, I didn't understand. Arthritis only happened to old people (or so I thought at the time)-I was barely 28!
By this time, I was having difficulty walking. My favorite exercise, lifting weights, was completely out of the question. In order to open a door or turn on a faucet, I had to use both palms. Opening bottles was almost impossible. I can remember having to ask strangers to open bottles for me. They all looked at me like I was an idiot. Here I was, this young woman who looked perfectly healthy. I should open my own bottle! At this time I drove a standard shift car. Driving became almost impossible, so I had to go and buy a car with automatic transmission. My whole life was changing, and I didn't know why.
My first visit to the rheumatologist was a rude awakening. He told me I had some form of arthritis. I might spontaneously get better, or I might have it the rest of my life. He gave me an NSAID and ran a bunch of tests. The first set of lab results show that I had a positive ANA, an extremely elevated sed rate, and a negative RA factor.
Sadly enough, one of the first drugs he put me on was tetracycline. He explained that some people thought there might be an infectious cause to arthritis, and we should give it a try. Unfortunately, he put me on a very large dose. I promptly came down with hives, and he took me off the tetracycline and never tried any other type of antibiotic. If only he had been more familiar with Dr. Brown's work, he might have saved me almost 10 years of searching.
He switched me to plaquenil, which I stayed on for almost 6 years. During this time, I must have tried 10-15 different NSAID's in addition to the plaquenil. Nothing I tried seemed to get me where I wanted to be. I moved twice during this period, so I went to two other rheumatologists. One of them had the nerve to tell me I wasn't really sick and I should just get on with my life.
While on plaquenil, I had periods where I felt better, although never back to what I considered "normal." I tired easily, and if I did anything for too long, I suffered the next day or two. My job required a lot of hours, and I soon found myself sleeping almost all weekend in order to function during the week. I hurt most of the time, although I was able to use my hands more and didn't need as much help. During this time I added a new symptom. I started getting mouth ulcers as big as my thumbnail. They would last for about a week, and then go away for a few days. Then others would appear. I also found out that if I spent much time in the sun, I would trigger a flare. I would need to go to bed in order to get over the sun exposure.
After about 6 years, the plaquenil quit working. By this time I was in New York, and my doctor there tried azulfidine, cortisone shots, and gold. He was also the first doctor willing to put a name to what I had. He called it rupus, which to him meant a combination of RA and lupus. None of these new drugs worked very well, and they all made me feel uneasy. He tried to convince me to start methotrexate and I refused. That was one drug that literally terrified me. I spent almost 2 years "drug-hopping", always hoping that the next one would make the difference.
In July of 1994, by best friend's mother sent me a book called "The Road Back." The cover said it was another treatment for arthritis. Since I had read almost every book out there and had tried many of the theories in them, I held little hope for this book. After all, it had been around awhile. If it were that good, why didn't my doctor know about it?
I started reading the book and cried through almost every page. It was as if someone had written about all the things I had been through during the previous 9 years. Not only that, everything in the book made sense to me. I tried finding Dr. Brown and found out he was dead. I lost hope that I would ever find someone to help. That's when my husband took over. He made a bunch of phone calls, and eventually found The Road Back Foundation. They gave him the name of Dr. Whitman, who saw patients one day a month in New York City.
My husband called for an appointment and was told that there was a 4 month wait for new patients. He wouldn't accept this, and somehow he convinced the nurse to fit me in on Dr. Whitman's next scheduled day in New York. I was so excited for that appointment! As soon as I saw Dr. Whitman, I told him I wanted to start on antibiotics. He didn't think I was a good candidate, and asked me to try prednisone first. He promised that if I would try it for a month, if I still wanted to try antibiotics after that, he would prescribe them on my next visit. Needless to say, when I went back the next month, I said the prednisone wasn't good enough and I wanted the antibiotics.
Dr. Whitman gave me a prescription for clindamycin, to be taken on Monday, Wednesday, and Friday. Since I was allergic to penicillin and tetracycline, this was one of the few choices available to me. Within a few weeks, I already noticed a difference. I don't remember going through a herxheimer reaction, but my husband remembers it so I must have had one. I just know that for the first time I was on a drug that was helping combat the disease rather than the symptoms. I was able to wean myself off prednisone about 6 months after I started the treatment. How I loved getting rid of that medication!
In November of 1994 we moved to Texas. I saw Dr. Whitman one more time, and he asked that I have the results of my blood tests forwarded to him. At this time I began to convince my family doctor to treat me with antibiotics. After about 6 months, he agreed. He didn't believe in it, but at least he was willing to give me the medication I needed.
After about two years on clindamycin (1996), my sed rate was in the high normal range for the first time since 1985. I even managed to spend all day walking around at Sea World without hitting "the wall" of total exhaustion. That's when I realized just how wonderful this treatment really is.
A few months later I started showing signs of diarrhea, which is a warning sign for clindamycin. It can cause ulcerative colitis if you keep taking it after that. My doctor switched me to erythromycin, using an equivalent dose. Since the protocol didn't mention erythromycin, he didn't know that it is usually given on a daily basis rather than the pulse therapy used with minocycline and clindamycin.
I've been on erythromycin since January of 1997. I also take MagSal, one of the many NSAIDs available. Perhaps because of the insufficient dosage, the erythromycin has never worked as well for me as clindamycin did. I'm still able to do almost anything I want to do, in moderation. I have some days where a particular joint will hurt, but most days I just have an achy feeling. If I do anything for too long a time, it will take me a while to get moving again. And I still can't stay out in the sun very long without a hat on my head. But overall I am so much better than I ever was on any other drug. I see Dr. Franco in July, and I hope to get my dosage straightened out so that I can get even better. The best thing about this treatment is that it is the first treatment that literally has no side effects! I can be on antibiotics for the rest of my life if I need to without any risk of blindness, internal organ damage, or any other nasty side effects that comes with all the disease modifying drugs that are considered the traditional treatments for rheumatic diseases.
I am so thankful I found "the road back." I only wish Dr. Brown were still alive so that we could all express our gratitude to him directly. I hope he's watching us from above and knows how much his dedication means to us all.