Dermatomyositis

My story was featured in the RB Intercessor a few years ago… Liesl Dutro, Dermatomyositis currently 37 years of age. My first symptoms 6appeared in July of 1996 and I was diagnosed with Dermatomyositis in September 1996 following a muscle biopsy. Symptoms of Dermatomyositis first appeared after the birth of my second child. I experienced the muscle aches and pains  I wasnt able to lift a blow dryer or get up from sitting, fatigue, and skin rashes that were similar to second-degree burns. I began my ride on the prednisone roller coaster – CPKs high, prednisone high; then as my CPKs would drop to normal I would decrease the prednisone, only to go back up with each flare. I tried herbal and naturopathic remedies and my doctor was really trying to push me into methotrexate in 1998. Through the Internet I found information on Dr. Brown, his antibiotic protocol and the book “The New Arthritis Breakthrough”. My rheumatologist would not look at the materials I brought and only said that antibiotic therapy was not a proven treatment for Dermatomyositis and complete quackery. With everything I had learned from my research, antibiotic therapy showed so much promise and made sense! Prednisone and methotrexate only suppress the immune system – not cure what is wrong… and they add a host of awful side effects, which can often be worse than your illness. I told my doctor, “Either give me a prescription or I’ll go to someone else who will” – I was adamant! He wrote me a prescription for minocycline – and luckily he wrote it to be taken twice daily, so I ended up with a bigger supply! I took it according to Dr. Browns protocol and began in November of 1998 – I was taking 12 – 15mg of prednisone daily at that time. I was having one of my worse flares with a second-degree-like burn/rash on my chest. My face was almost reddish purple, I itched like crazy and had muscle weakness. I began my slow decrease of the prednisone when my CPK was in the normal range. I noticed after about five months that my skin had really cleared up. After about 14 months I was off of prednisone completely and taking the minocycline once every Mon Wed and Fri. I was in remission in March 2000  no meds and no symptoms of DM. My doubtful doctor said, “You can’t help but wonder if that minocycline didn’t help” (duh!). He also told me he was quitting his practice to make furniture! I was off all meds from February 2000 – May 2001. I happily found out in August 2000 that I was pregnant with my 3rd child… our baby girl! Kaitlyn was born April 17, 2001 – not quite a month later, my muscles ached and burned… relapse! I went to my GP who knew nothing about DM or antibiotic therapy… he asked me what I’d used in the past, he read from a medical book about DM, prednisone, methotrexate, etc. At this time Kaitlyn was just over a month old, and I did not want to quit breastfeeding because of medications. So, I told him about the antibiotic protocol and minocycline… unfortunately, I couldnt take minocycline and breastfeed… but I told him I could take other forms of tetracycline… doxycycline, and some others I had written down. We found that erythromycin was safe for me and baby so I gave it a try… my CPK came down steadily and by the end of the summer I was back in the normal range with taking only taking erythromycin. I am doing phenomenally  I had weaned down to a maintenance dose and then later off. I am now in remission  no meds and no DM symptoms.