CAROL, dermatomyositis

As a child I was bothered with tonsilitis. At the age of eight I had my tonsils and adenoids removed. The earaches only returned when I was in the wind. Over the next few years colds, flu and bronchitis reared their ugly heads occasionally. Penicillin of one form or another was usually the drug used to help.

FALL 1993 - Hot flashes began to occur occasionally.

JAN 1994 - I developed a very bad case of bronchitis. The doctor prescribed cephalexin 500mg - 1 tablet 4 x day for 10 days. He also prescribed prednisone 5mg - 1 tablet 4 x day for 10 days.When the medications ran their course I began experiencing some odd symptoms. My hot flashes had changed to my becoming itchy instead of sweating. First the soles of my feet, then my calves, then the thighs, the buttocks, the lower back, the neck and head. My head was so hot you could fry an egg on it. My face and head remained very red, like a severe sunburn. My GP informed me that I was probably having an allergic reaction to something I ate. My feeling was that the drugs were connected to my symptoms. He informed me "NO WAY!" There was no rash with the itching unless I scratched and then it looked like a very mild heat rash. I continued to complain for months.

JUN 1994 - Mother came to visit. She smokes. Within five days of her arrival I had bronchitis again. GP prescribed same as above. I took the same and felt much better. I told him this, believing that now he would see the connection. No way - allergy to something I'm eating. He never added anything new to my diet. I made an appointment with a dermatologist for September.

AUG 1994 - I went to another GP for a second opinion. He felt that I might possibly be deficient in B6. He ran some tests and they came up negative.

SEP 1994 - The dermatologist shrugged his shoulders and said he would look in his text-books and let me know what he found.

OCT 1994 - I saw the dermatologist again. He said that I had dermatomyositis and sent me to a rheumatologist the same day. I entered the hospital, had a blood work-up, etc., was put on 70mg of prednisone and was sent home after one week.

DEC 1994 - I started to taper off the prednisone - 5mg at a time every two weeks.

MAR 1995 - I tapered off to 15 mg prednisone. The rheumy put me on Imuran (aszathioprine 50mg). I took 6 tablets only and they made me go off into space as if on a drug trip.

JUN 1995 - I started to taper the prednisone to 12.5mg for two weeks.- then 10mg - and at this time was started on Plaquenil 200mg (hydroxychlorquine). This caused me to sleep 16 hrs each day for four days. I also was getting a very itchy rash and some swelling all over so it was not too noticable. At end of month I had to go to emergency for dehydration.

JULY 1995 - I was in hospital again. Going down to 10mg prednisone created havoc. My CPK went from 400 to 4000. I was swelled up all over and had muscle inflammation big time for the first time. Also, I had water blisters all over my right arm. The right side of my body was swelled up twice the size of the left side. My respiratory capacity was down to the mid 70's so the lung doctors put me on 75mg prednisone. I spent 30 days in hospital.

OCT 1995 - I was put on cyclophosphamide 50mg twice/day.

NOV 1995 - Increased the cyclophosphamide to 100mg twice a day. My liver enzymes went way up so I was taken off it. I went to Australia to my son's wedding and stayed 3 weeks. I felt great - at least better than I had in a long time. At this time I had weaned my prednisone down to 20mg.

DEC 1995 - OCT 1996 - Went back to work as a part-time teller at a Credit Union. I had all my strength back and could do most everything I'd done before the disease hit.

NOV 1996 - After two bouts of antibiotics in October for a sore throat and bronchitis, my thrush was out of control. I was taking Nystatin for it as well as 9 capsules of acidolphilus and bifidus. I felt that the candiasis had taken over my stomach, small intestine, etc. The doctors said I was crazy. Well I lost 30 lbs in approximately 3 weeks. I had no appetite, food tasted gross and my stomach hurt whether I fed it or not. I lived on soup, some veggies & chicken.

DEC 1996 - I went to an allergist. The tests came back that I was allergic or sensitive to every thing that I'd been eating for the past month. I stopped eating them all and tried other foods but nothing helped. The rheumy put me on 200mg ketoconazole for thrush.

JAN 1997 - I ended up in hospital again. Tests were done and I had duodenal ulcers - two small ones at opening of my small intestine. I stayed in hospital for 10 days and was given Losec, which helped.

MAR 1997 - Went for endoscopy - they found white pimple like bumps on the lining of my stomach so the gastroenterologist gave me fluconazole for 20 days. It seemed to have cleared up the candiasis and at least I had no sign of thrush. I believe may still have some internally somewhere, but doctors say I'm nuts.

APR-JUL 1997 - I was getting weaker and had problems with edema. The doctors figured I was having a flare so increased my prednisone to 30mg. The rheumy notified me that I could increase the prednisone over the phone so there was no need for me to drive all the way to Wpg.

AUG 1997 - Homecare was called in to help me. I was so swollen that I couldn't get up and down on my own. I was still shuffling around when someone stood me up. I finally entered the local hospital and stayed there for two days. Then I was taken into Wpg. by ambulance.

SEP 1997 - A diagnosis was not given and I still don't know exactly what I had, but I was so full of water that I nearly drowned. My left lung was totally full of water, my heart was surrounded by water. Protein (albumen 14 - normal 35-50) was going out of my body via the urine and there was water in the cells where protein was supposed to be. I was put on a diuretic 3 x day and lost about 60 lbs of water in three weeks. At this point I was still unable to move on my own.

OCT 1997 - I had a feeding tube put into my small intestine - they by-passed the stomach because it was felt that I was not properly digesting anything. I had the feeding tube in until December 10th. My albumen was up to 26 by the time I was sent home.

NOV-DEC 1997 - I improved enough by the middle of November that I was able to go to physiotherapy. By the end of November I was wheeling myself. I got out of hospital on Dec 17th, my strength still low, exercising as my muscles permitted and walking every chance I got. I still had Homecare as I still had trouble getting in and out of bathtub and couldn't roll over by myself.

FEB 1998- The inside of my right wrist was swollen. I contacted Dr. Franco and lined up a doctor in Roseau MN to help administer the antibiotic protocol. I got all the blood work that was needed and sent the results to Dr. Franco.

MAR 1998 - I talked to Dr. Franco on phone. The mycoplasma test was negative and his advice was no AP and that it was a waste of money at this time for a trip to see him. I was very disappointed and asked about Dr. Burgstiner's thymic complex. He said it wouldn't hurt and I might as well try it. My right hand had now swollen up.

APR1998 - I started on the thymic complex. What a difference!!!! In three days I noticed I had much more energy, although not the muscle power to use much of it, but I was beginning to fell like a human being again. I believe that this thymic complex has helped my immune system to stabilize. The little finger on my right hand swelled.

MAY 1998 - There was a clear area on my little finger between the first and second joint.

JUN 1998 - New doctors from South Africa came to our local hospital to practice. I went to see one of them and he said he would help me get on the antibiotics as soon as my blood tests came back and we could see where we were. I started 50 mg minocycline on Monday, Wednesday and Friday on June 20th. The clear area on my little finger turned yellowish. I never had any pain until the weather began changing every day. I now took Naproxen 750mg SA every day.

JULY 1998 - I went to see the rheumy and asked about the swelling - "swollen tendons", she said. A small pimple appeared on my little finger.

AUG 1998 - The pimple grew until it burst. The GP sent me to Plastic Surgery in Wpg. The infection was in my finger only and I stayed in the local hospital on IV antibiotics for the weekend. I returned to Wpg. on Monday and decided that the infection was in my whole hand. I had surgery to clean out the infection - an incision in finger, hand and wrist. I stayed in hospital for 10 days on IV antibiotics, minocycline - 100 mg twice a day, Septra twice a day, Biaxin - 500 mg twice a day, ciprofloxacin 750 mg twice a day.

SEP 1998 - The GP panicked and put me in hospital as my iron was very low (4). I had an endoscopy and colonoscopy done to check for bleeding and the result was negative and also, no sign of any ulcers. I was put on iron twice a day. I used the Naproxen now only when necessary - usually once every 5 to 7 days.

NOV 1998 - My left shoulder decided to open up and ooze infection. The lab had been incubating the infection since August 10th '98 and still didn't know what we were dealing with.

JAN 1999 - I had a cataract removed from my right eye and found out that they still didn't know for sure what the infection was. I probably will never get a definite diagnosis.

FEB 1999 - My strength is coming back to near normal and I feel about 85% better. The itching and sore skin is the biggest problem I have now. With all the antibiotics I'm on not too sure how much the minocycline is helping. I have some pigmentation problems and some bruising. I am down to 12 mg prednisone and take many vitamins and herbs as well. I'm looking forward to the day minocycline is my only antibiotic. I believe that antibiotic therapy is the way to go.

Carol Zarn,
Box 107,
Piney, MB
R0A 1K0
ph.1 (204) 423-2053

You can reach me at

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