CONNIE, dermatomyositis

My journey started when I first got sick in Aug of 1996, after spending the summer trying to chase away a urinary tract infection. Boy, did my troubles ever get started! I started with pins and needles in my hands, which progressed to zinger pains in my arms and feet, lots of fatigue, a very annoying cough, joint and muscle pain, brain fog, and my ears would hurt for a few days, maybe every 3 or 4 months, but I would forget to mention it to my doctor because they weren't hurting at the time of my appointments.

My doctor ran all kinds of tests and sent me to all kinds of specialists. Nothing. This continued for a year and a half, with many symptoms coming and going. Finally, in Feb of 1998, my doctor told me that even though all of the many tests didn't indicate that I had a connective tissue disease, she still felt that I did. She started by calling it rheumatoid arthritis, but she was really was centering on the catch-all term - undifferentiated connective tissue disease. (I forgot to mention, way back when I first got sick, my doctor had circled 'rheumatoid arthritis' on my receipt as I left after an appointment.

I went home and looked up rheumatoid arthritis on the internet and found out all kinds of things that I didn't want to know :-) But there was one website at that was so different. It was brimming with hope! Not a trace of "learn to live with the pain." But, since this was early in my diagnosis phase, I moved on. So far the tests hadn't indicated RA. This website and their mention of something called Minocin stayed in the back of my mind, however.)

Back to Feb 1998. My doctor indicated that I had a connective tissue disease. At that appointment, I was also seeing her because I had come down with an upper respiratory infection. As she was about to prescribe an antibiotic, the brightest light went on in my doctor's eyes. She told me she wanted to treat the URI and the RA (or whatever) with an antibiotic called Minocin. Sounded good to me!! I rushed home to try to find that site on the web that had been so positive and full of hope, and I thank God that I found it.

OK, now the skeptical side of me kicked in - after all, this is the internet! Can you believe every thing you read here? Of course not. The website looked good, the people sure appeared happy and trustworthy, but I still had doubts. At that time, there was even a patients' conference being put on by a Dr. Robert Franco from Riverside, California. You could sign up for it through the website. My skepticism was running on high gear. Finally, I thought to myself, "If one of my kids was sick, would I leave any stone unturned in the search for an answer?" Absolutely not. That's when I decided to go to California to the conference, see Dr. Franco, and also meet many of the people from the on-line support group.

Dr. Franco fine tuned my diagnosis to dermatomyositis. All I can say is "thank you, dear God." I came home full of hope and enthusiasm. I shared with my doctor all that I had learned at the conference. I didn't know if she knew all of the details about this therapy, or if she just knew the basic idea. Just in case, I gave her all a book that I had read, called "The New Arthritis Breakthrough" by Henry Scammell. I have to tell you that I think the world of my doctor. Her walls are lined with awards and diplomas, top of her class, etc., medical residency training at Stanford Medical School - she is remarkable! She is always willing to listen to me.

So, after two months on the Minocin (and I had read that this is a very short time) I began to see improvement. My feet didn't hurt anymore! I didn't have that "walking on cobblestones" feeling. In September of 1998, another antibiotic called Zithromax was added to my repertoire. This helped greatly to control my cough, which was a major problem by that time. Little by little, I noticed improvements in my energy, pain levels, muscle strength. I am now to the point where I have improvement in all areas, roughly 80-90% back to normal!

I finally went to an ENT doctor regarding my ears. I guess I had so much other stuff going on that I was able to ignore it. The ENT said that I might have another connective tissue disease called relapsing polychondritis. This kind of set me back until some research I uncovered indicated that the Minocin can also be used for RP. The research was published by Dr. David Trentham, from Harvard University. I had recognized his name from the book that I previously mentioned.

So here I am, getting better every day. My muscle strength has improved a lot in the past year. My college-aged children remind me that I had better get busy rebuilding my muscles if I want to be able to lift my yet to be conceived grandchildren some day. Talk about an incentive! For me, the antibiotic route was the path to travel. More and more research is showing that infections are either the cause of these diseases, or at least a co-factor. I feel that I have attacked this disease at its source.

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