dolores

[Guest guest]

hi Dolores... I'm sorry if I get confused between you and Mike and the separate

problems you both have... also I'm sorry to hear that Scleroderma has affected

you so badly . Even having RA myself, I am ignorant of how Scleroderma affects

people who suffer it. I have looked it up on the internet, but I still can't

get a grip of what it actually does to you on a daily basis. Did you have a lot

of pain with it, and where is the pain located ? How else does it make you feel

? I suppose I should wait for the book to come out and then I'll really find

out about it.

Leonie

Re: rheumatic Gwen's story

Wow! Thank you for forwarding Gwen's letter. This makes it all

worthwhile.

Tell Gwen to continue to stay in touch as we would love to keep hearing about

her progress. I don't know if you know, but I am in the midst of writing a book

of stories

written by the patients to everybody. Most books are written by professionals,

but none are written by us who are afflicted, fighting and coping. Some of us

are able to rise above the pain, disappointments and struggle to help others. My

beef is that whenever Mike and I wear our Scleroderma hats or backpacks, people

ask us, " What is Scleroderma? "

We are desperately working to put an end to that question and bring about

awareness, so

that no one will ever ask again, what is?----------to any of our Th 1

diseases. I also got sick in 2004, but it was the end of 2005 before I was

diagnosed. I learned about the " Infectious Theory " and the Antibiotic Protocol

from people who post on this site and from the RBF. By January 2006, I was on

Minocin. I, too was bedridden for 8 months and went into remission in May 2007.

Started doing research and still learning. I am a writer. Not well known, but

have been awarded for my poetry. Decided on the book and may keep on writing

till the whole world knows what we are up against. If Gwen would like, I would

like to put her story into my book, just the way she wrote it. The proceeds from

the book after expenses will be delegated to research. I want someone to find a

cure. That is my prayer for 2008

These stories are uplifting and educational and hopefully life saving. Thank

you, Dolores & Mike

Adlard <cadlard@...> wrote:

Hi all,

Gwen has sent us her story which I've just put on our website at

rheumatic.org. Thankyou very much Gwen and I'm very glad to hear how

much better your life is now.

Chris.

___________________________________________

GWEN, Polymyalgia Rheumatica/Giant Cell Arteritis

My life has been one of constant pain throughout my body as I have a

history of multiple chronic illnesses - Raynaud's, Osteoarthritis plus

a mild case of rheumatoid arthritis, but in late 2004 my life took a

turn for the worse. I was so ill, and in so much pain throughout my

body I could not even get out of bed. I had seen many doctors and had

numerous tests. Blood test results revealed CRP and ESR high and FBC

low.

In January 2005, I developed a huge lump on my temple so went back to

the doctor again to see what this could be. He thought I had hit my

head in my sleep, but in the next few days the lump grew bigger so I

went back to the doctor again. Alarm bells were starting to ring for

him and he sent me for more tests. The doctor rang me the next day and

told me to pack a bag and go directly to the eye hospital, as he had

finally found out what was wrong with me. I had Polymyalgia Rheumatica,

plus the secondary complication of Giant Cell Arteritis because they

did not diagnose the PR early enough.

They operated on my head the next day and confirmed I had GCA -

proceeding then to fill me full of drugs. My doctor could not stop

telling me how sorry he was - he thought I was too young to have PR (58

years) - only people in their 70s get this disease. I had to retire

from work after 18 years - too ill to continue.

I was sent to the Rheumy, put on toxic drugs including 65 mg. of

prednisone, weekly injections of methotrexate, plus Mobic. I was so ill

at one stage I didn't care if I lived or died. There was improvement

from the drugs in the beginning, but the side effects were horrendous.

I got high blood pressure, high cholesterol, and worst of all - steroid

induced diabetes. My life was a mess.

In 2006, I decided to search the internet to see if anyone could help

me as I was under 5 different doctors and getting nowhere. I knew I had

to do something or I was going to end my life in misery. I came across

this wonderful support group (www.rheumatic.org) that saved my life.

Just being able to send emails back and forth, knowing you are not

alone in this fight, was a big help to me.

Now the fun started trying to convince the rheumy to give me the

antibiotic protocol. I took all my print outs about members' success

stories, but she would not even read them. She said there was no proof

this worked in her journals - head in the sand attitude. So back I went

to the GP and put my case to her. She said if I could get another

doctor to support me she would give me Minocin.

So I went to my orthopaedic surgeon who looks after my knees and hips.

Well, he was very supportive when he read the notes saying it made

sense to him as often when he is operating on patients he has made the

comment to other doctors that the inflammation he was seeing in the

joints looked more like infection, so he agreed to write my GP a letter

of support for the AP.

Back to the GP I went and she gave me a script for Minocin - asking me

to sign a disclaimer which I was willing to do - getting me started on

the road back from hell. My dose to start was 200 mg. per day for about

four months. When the pain started to improve, I gave up the steroids*

and methotrexate, and went to 100 mg per day for another three months

until I reached remission. Now I take 100 mg. three times a week to

keep me in remission.

I am living proof this treatment works. Even my Raynaud's is in

remission. All of my doctors (except the rheumy which I gave the sack

to) cannot believe the change in me, and now believe the treatment

works and are giving it to their other patients.

I owe a lot of thanks to the group - especially Harold, Mike, Ethel,

Delores and other members who told their stories to help people like

me. If you would like to know more about my treatment please feel free

to email me.

Regards, Gwen

*Patients on steroids should not stop them abruptly, but wean off of

them slowly under the guidance of their physician.

You can reach me at gmartin4@...