LIANNE, polymyositis

Update 11 years later!

Here I am as healthy and normal as can be. I just had my muscle enzyme (Ck) done and they are 35! Totally normal!! I am pain free, drug free and couldn't be happier. I took antibiotics 3 times a week (Minocycline) for several years. It took two attempts to be able to go off of them. I have been off the antibiotics for two years. I can wall climb, and to the top of the wall I might add!!! I can walk for miles and live a great life. I did end up with type 2 Diabetes and was able to reverse that (yes reverse it) by eliminating all gluten from my diet. People had been telling me for years to cut out wheat and I thought it would be impossible. It is very easy.

If you are reading this feeling hopeless, let me tell you....educate yourself, take charge of your health and if one doctor won't co-operate by doing the treatment get rid of them. It is your life and you deserve to be healthy. Gee, if you had a mechanic that wasn't fixing your car properly you would find a new one. Same goes for a doctor that wont do what is best for you. Please don't get rooked into a doctor/ego problem. My original story is below. Read it and if I can be of any help to you do feel free to contact me.

My life is my own once again!

Two years ago I was diagnosed with polymyositis. I was devastated. I was a business owner, single parent, and a professional skater. I was so very tired, in a lot of pain, and, most of all, I feared for my life.

Prior to being diagnosed I went from doctor to doctor trying to figure out what was wrong with me. I thought I was having an allergic reaction. I went to a third allergist. She interrogated me for over an hour. She ran a series of blood tests and discovered I had an elevated CPK. She confronted me assuming I was a cocaine addict and felt that must be the cause of my problem. I explained I didn't do drugs, but by the sound of the alternatives I almost wished that was the problem.

I was sent to a rheumatologist. My diagnosis was confirmed by a muscle biopsy and an EMG. In that same breath that was used to give me the diagnosis, I was told that I had to have an AIDS test. I freaked. She failed to explain that the drugs she was going to prescribe were going to suppress my immune system and if I had AIDS, it would speed up my death.

A psychiatrist had read to me all about being a hypochondriac, and I was told I was the healthiest looking sick person she had ever seen. When I told her how scared I was waiting for the AIDS test results, she told me, "You don't have AIDS. You had better hope you don't have polymyositis - you can die from that."

So here I was 33 years of age, experiencing difficulty walking and in so much pain I couldn't lift my skating bag let alone think about putting them on. I went through the typical grieving process, cried forever, slept a lot and started to make arrangements for my little boy in case I didn't make it. I couldn't stand the pain.

I filled my prescription for prednisone and buckled over in pain with the first dose. Gosh, I was only 115 pounds and the doctor had prescribed too high a dose. Over the phone I was told to cut it down. The most I could tolerate was 12.5 mg. a day.

I was a horrible grump. The steroids caused me to be miserable, but I didn't have a choice. Three months later I was probably close to 160 pounds. Then they introduced their miracle - methotrexate. How lovely!

I was introduced to a massage therapist who did her thesis on the affects of massage therapy on polymyositis. I have seen her weekly since. It has eliminated the horrid yeast infections I was getting, untangled my muscles and stopped me from having swallowing problems. My massage therapist introduced me to The Fairy Lady who had dermatomyositis. I met Cathie. She was a dear, but I didn't want to get to know her because she seemed so much worse than me. I was scared. I didn't want to become like that. We stayed in touch.

As my hair fell out, and as I felt like I would almost welcome death, I found out about Dr. Thomas McPherson Brown's antibiotic therapy. I had heard Gabe Mirkin talk about it but didn't believe it would work. Then I heard about the antibiotic support group and Ethel. I figured these people all must be hired by the drug company and it must be a scam. I took Henry Scammell's book, The Arthritis Breakthrough, to my new rheumatologist. He was head of rheumatology. He told me Dr. Brown was a nut. I was heartbroken.

My second rheumy told me to forget about ever having another baby, sell my skates and just do the best I could.

I spoke with Ethel and decided I WAS going to do this. I went to my GP and he gave me a prescription. He trusted my judgment, not having a clue as to what I was doing. I carried the prescription around for two weeks before I filled it. My dad is a dentist, my brother and brother-in-law doctors, but they didn't know how to help me. I went to a friend who is one of North America's leading infectious disease doctors and begged him to check out the treatment. His conclusion was if I was his kid, he would get me to take the antibiotics.

I started then 100 mg. of Minocin three times a week. There were ups and downs and I questioned their effectiveness. Some days areas hurt that had never hurt before.

The rheumatologist said I had better make an emergency plan because I was being foolish and there was no way this would work. I said, "Well, I gargle with fish eyeballs every 15 minutes, pray to allah, and the klingons are with me." He just shook his head and laughed.

I had quit methotrexate immediately and was trying to reduce the steroids. It was tough, but six months later I was off them.

Today I am only on minocycline. All of my blood levels are normal. I feel like a million bucks. I have my face and my body back. I wish I could stand on top of the Empire State Building and tell everyone they don't have to plan their funeral. There is hope.

Very ironically, I was teaching skating this year, and low and behold Dr. Negative Rheumy #2 was there watching me teach his daughter. Pretty good for a hopeless gimp! I said, "I don't know if you remember me, but I used to be your patient. I have polymyositis and I threw all your medicine in the garbage and I am on antibiotics." He said, proud as a peacock, "Yeah, they really work." I wanted to strangle him for subjecting me to my hell, but just smiled and skated away.

My GP said, "You can't argue with success." I am success. I owe my life to Ethel, Cathie and the rest of this support group. I wish I could be with you. I thank you all.

Those of you who may be wondering whether you should start this therapy or not, I'd be happy to race you around the block.

Take care, Lianne.

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