Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 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@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Hi Mike, I would love, for you to add this story, to your book, as I know it will help others, to get on AP. And maybe get those " pig headed " Doctors and Rhuemy's to take notice, and listen to there patient's instead of drug companies. I have learn a big lesson from this, " Never give up, as there is help, and friends out there " , and doctors are not always right, because they are guided by text books. Regards Gwen 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@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Hi Gwen, Thank you so much for permission to add your story to the book. The book is being put together by Dolores, Mike's wife. Mike is my support system. Actually we are each other's support system. When Mike had his strokes, I was there for him and when I came down with Scleroderma, he was there for me. Now we are here together to help everybody in need. Martysfolks is both of our sites. But I am the writer in the family. I will print your permission and put it in my book profile. Still waiting on some other stories. Hopefully from some men. They are not as open as women are. If you know of any men who would like to add something to the book, we would appreciate it if you give them our e:address and have them contact us. Thank you immensely~~~~~Can't wait till the world reads about us. Oh! one last question. Do you want to use your name or choose an alias. and if you have any photos of yourself to go with your story that would be great. If you choose an alias, you can do what some of the others have done and that is send a photo of an affected part. eg: hand, leg, foot, fingers, etc. Just write your name on the back of the photo, so I put the correct photo with the correct person. You will get a free copy of the book when it is published. I promised that to each and every person who has contributed their story. To send a photo, please mail it to: Mr. & Mrs. Rosner - 200 E. 5th St. # 10 C, Newy York, NY 10003. or e:mail martysfolks2004@.... Thank you. Dolores & Mike Gwen <gmartin4@...> wrote: Hi Mike, I would love, for you to add this story, to your book, as I know it will help others, to get on AP. And maybe get those " pig headed " Doctors and Rhuemy's to take notice, and listen to there patient's instead of drug companies. I have learn a big lesson from this, " Never give up, as there is help, and friends out there " , and doctors are not always right, because they are guided by text books. Regards Gwen 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@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 I've very grateful to Delores for putting together the book, as well as the contributors. I wish the doctors would read it too. Amy mike rosner wrote: > > Hi Gwen, Thank you so much for permission to add your story to the > book. The book is being put together by Dolores, Mike's wife. > > *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@... <mailto:gmartin4%40bigpond.com> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hi Mike & Dolores, By all means use my name , that is the very least I can do, to repay all your help and advice. I would love to help people, just as you have helped me. The more people that tell there story, the sooner the medical profession will take notice. I would not be alive to-day if it wasn't for the group, and I will be forever grateful to all the members. My Husband and doctors know, I hit rock bottom, and thanks to group and AP therapy, it's like a miracle. I enjoy life now,can do alot more around the house,and best of all, I look forward to to-morrows. I will send you some before and after photo's and you can see for yourself. Lots of love and best wishes to you both, the world needs people like you. Regards Gwen 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@... Quote Link to comment Share on other sites More sharing options...
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