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Update to Lianne's story

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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@...

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