Lee's story

[Guest guest]

Hi group,

Lee has offered her story for our web page and I've just put it up at

rheumatic.org/lee.htm - Lee is not in our group but has offered to help

anyone who would like to contact her. I have thanked her by private email.

Chris.

____________________________________________________

LEE, dermatomyositis

I am female, currently almost 32 years of age. My first symptoms appeared in

July of 1996 and I was diagnosed with dermatomyositis in September 1996. In

March of 2000 I am in remission.

I was diagnosed with dermatomyositis after the birth of my second child. I

experienced the muscle aches and pains, fatigue, and skin rashes that were

similar to second degree burns. I rode 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 trying

to press me into methotrexate in 1998. I then found information on Dr.

Brown and his protocol and I read 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.

I don't know of anything else that shows as much promise or makes sense!

Prednisone and methotrexate only suppress the immune system - not cure what

is wrong. I told my doctor, " either give me a prescription or I'll go to

someone else who will " - I wanted to try it. He wrote me a prescription -

and luckily he wrote it to be taken twice daily, so I ended up with a bigger

supply! I took it according to Dr. Brown's protocol - Monday Wednesday and

Friday, 100mg in the morning and 100mg in the evening. I began taking

minocycline in November of 1998 - I am guessing that I was in the

neighborhood of 12.5 - 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 a reddish purple, I itched like crazy and

had muscle weakness. When my CPK was in the normal range (in Dec 98 or Jan

99) I began my slow decrease of the prednisone. I noticed after about five

months that my skin had really cleared up. After one year of being on the

minocycline my CPK was consistently normal and I had decreased to 2mg of

prednisone. In January 2000 I was only taking the minocycline once every

Mon Wed and Fri and then in February I quit taking minocycline because I

got a sinus infection and I didn't want to take Augmentin and minocycline at

the same time.

By March 2000 (16 months after starting minocycline) I was only using

one-half mg of prednisone and my CPK was 55. My doctor said to quit the

prednisone and I am now free of prednisone and any affects of my

dermatomyositis. My doctor said " You can't help but wonder if that

minocycline didn't help " (duh!) - and as an update, he has quit practicing

and is now building furniture (he's quite good at it).

Lee,

Colorado, USA.

You can reach me at ldutro@...

[Guest guest]

In a message dated 2/27/2005 8:12:44 PM Pacific Standard Time,

bengilbert@... writes:

Please ask Lee to contact me at my email address (above).

I guess he is talking about me,,, i will contact him privately.

Lee