As a child, I suffered numerous ear and throat infections, spending most of my youth on one antibiotic or another. At the age of three, I had my tonsils and adenoids removed, the thought being that it would cut down on the infections, but it did not. Physical Education was a torture to me, I was never able to explain the extreme discomfort and achiness that physical activity would cause, and I remember experiencing a lot of leg cramps. Since I was a brainy kid and a little overweight, I was just told I was "bookish and lazy."
[I want to take a moment here to express a personal theory I have recently developed. When all of the negative hype started regarding "over use" of antibiotics, I thought that maybe the extensive use during my youth had somehow weakened my body and was at least partially responsible for the illnesses I acquired as an adult. Since starting the antibiotic protocol, and with everything I have learned about the infectious theory, I NOW believe that I actually had my condition since childhood - probably juvenile dermatomyositis - and that the frequent antibiotics that I took kept it from flaring until my adulthood, by which time I was rarely taking antibiotics for ear or throat infections anymore. Makes sense, huh?!]
In 1984, at the age of eighteen, I acquired one of the worst cases of chicken pox my doctor had ever seen. My son was born in 1985 and by 1986 I started seeing doctors complaining of a general feeling of malaise and fatigue. I was constantly told nothing was wrong with me although I certainly did not feel "right". In early 1989, I ended up with a form of shingles known as Ramsay-Hunt Syndrome, that affects the cranial and facial nerves. I had a great deal of pain in the left ear and experienced extreme vertigo for two weeks. The ordeal left me with permanent residual facial paralysis on the left side, an easy tendancy toward dizziness, and some slight hearing loss. By the summer of 1989 my marriage was over and my son and I moved from Miami to Orlando to live with my parents. To say all of this was stressful would be a major understatement. In 1990, after having difficulty finding a job, I decided to take some courses and started working part time at my son's day care. I worked with two year olds and it was during this time that I first started noticing symptoms beyond fatigue. It was getting harder to pick up the children until one day my hands and arms just about gave out on me. I also noticed that I could no longer stand for any length of time while the children were outside playing as my feet would hurt so much. I saw a new GP who said he thought it was arthritic and he sent me to a rheumatologist.
After numerous tests, my rheumatologist was only able to diagnose "undifferentiated collagen-vascular disease" and suggest a variety of NSAIDS. By the end of 1990 the muscle pain and weakness were getting worse. Walking was becoming more and more difficult, climbing stairs was nearly impossible. I couldn't reach my feet to tie my shoes or raise my arms over my head. My body, especially my limbs, felt heavy and I was rapidly losing weight. My rheumatologist decided to do a CPK - a test that measures muscle enzymes. Normal range is 45-235, my results were 25,000! He diagnosed me with polymyositis and started me on 80mg of prednisone a day. Within 2 weeks the steroids had given me some strength back and reduced the pain. I didn't feel 100%, but I was able to function again. In 1991, I started working full time in a banking job and my son and I moved into our own apartment. During one visit with my rheumatologist, he noticed a rash on my knuckles, elbows and knees and changed my diagnosis to dermatomyositis.
Over the next few years I tapered my prednisone and kept an eye on my CPK level. I knew I had physical limitations, but if I didn't push it too hard, I did okay. We even took a trip to Ireland in 1993. In 1994 I went to my doctor to ask about red spots that had appeared on my face (telangiectasias), and stiffness that had developed in my hands. He told me it was an overlap of CREST syndrome and said there was no need to modify my treatment. (It would be 1997 before I'd learn that CREST is a form of Scleroderma.) The next few years went by with some slight flares and a couple of strange occurrences, including a problem in one elbow due to calcifications, but overall the prednisone seemed to be keeping the myositis pretty much in check.
In March of 1997, I experienced a kidney stone that I passed in May, and shortly after my entire body felt like it was starting to fall apart. I began experiencing a truly debilitating fatigue, where my whole body and head felt like they were trapped in a thick fog. I would have waves of intense muscular pain that extended from head to toe during which even the slightest movement was incredibly difficult and painful. My knee joints started hurting, I could barely turn my head due to the pain and stiffness in my neck, and I could not close my hands. I was having abdominal pain, a constant low-grade fever and sweats. By the time August rolled around, I was unable to work. I dropped in on a Scleroderma chat on AOL and heard about "The Road Back." I immediately bought "The Arthritis Breakthrough" and decided I wanted to try the antibiotic therapy. This was about the same time I was diagnosed with an overlap of lupus, due to an extremely elevated anti-dsDNA test. My prednisone had been increased to 40mg a day, but I refused methotrexate and plaquenil. I started taking 200mg of Minocin every other day and I also started taking acidophilus, a multi-vitamin, colloidal minerals, St. John's Wort, Gingko Biloba and DHEA. I subscribed to the on-line mail support group and crossed my fingers that the antibiotic therapy would do something for me.
March 1998 - my prednisone is at 25mg a day and in Feb I added 1200mg Clindamycin once a week to my routine. I was starting to write my story when I developed an intramuscular hematoma in my leg that pretty much monopolized my attention and took me back out of work again. Now that it is beginning to heal, let me reflect on how I have been doing since starting the antibiotics seven months ago. My CPK is at an all-time low of 56, and an EMG (muscle test) came back "normal." [Before the hematoma], I've been able to run up my stairs and I even went dancing. I could also squat to reach the floor, something I have not been able to do in years. I can close my hands into fists again, and my skin is no longer itchy. There are even days when the rash on my knuckles is barely noticable. I've had some mild herxes, usually involving joint pain in my knees, hip and shoulder as well as increased fatigue and depression, but they don't last too long. I still have problems with the lupus and scleroderma to overcome, but I feel the antibiotics have GREATLY improved my myositis.
When I saw my rheumatologist with the hematoma, he asked "are you ready to abandon the antibiotic?", and my response was "NO WAY!" If I were to simply maintain the level I am currently at, it would be enough to stay on it! My goal now is to get the word out to other people - especially myositis patients. Anecdotal or not, I am convinced the antibiotic therapy DOES WORK and I will update my story from time to time.
You can reach me at Ceardai@aol.com