Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Hi group, Lianne has updated her story and I've put it on our web page at rheumatic.org. I hope it will encourage those of you with polymyositis. Chris. > LIANNE, polymyositis > > Update 11 years later! > > Here I am as healthy and normal as can be. I just had my muscle > enzymes (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 wont 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. 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. > > You can also reach me at trunks@... Quote Link to comment Share on other sites More sharing options...
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