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My friend who recently presented at the American College of Rheumatology Conference was at a research meeting in Wash. D.C. recently and met someone who conducts research with people with scleroderma. My friend chimes in and says I have a good friend who has scleroderma, and she has improved on antibiotics. The scleroderma researcher is aghast and says there is absolutely no evidence to support that. My friend counters that she has personally seen my health improve (i.e., skin tightness improving). Scleroderma researcher insists that antibiotics would not be effective and says, “I'd be happy to talk to your friend. Here's my card.”
Puh-lease! What could she offer me? All the treatments for scleroderma that are so called effective are aimed at organ involvement. Do you have pulmonary problems? Do you have renal crisis? On AP, I am trying to avoid getting those problems in the first place, and have done so successfully.
So I tell my friend “See what I'm up against?” :headbang:
For those of you who are new to AP, I've been thinking about a research study to investigate if AP is more effective than conventional rheumatology medicines in improving health and function in scleroderma. The Road Back Foundation board was receptive to this idea last year, but funding is the next big hurdle. No pharmaceutical company is going to fund the study because the generic antibiotic meds are already out there. NIH won't fund studies without pilot study data. This study would serve as the pilot study but still, as we know, it takes awhile to see results with AP so the study would have to run for over a year and that costs $$.
Although I'm not a RBF volunteer, I don't think I'm out of line to remind those who have been helped by this board to donate what you can. If you can't donate dollars, why not offer other talents? For example, some people have discussed t-shirts, bumper stickers sales, and You Tube videos to promote AP for rheumatic diseases. I know this is a dedicated optimistic group – what other ideas for promoting AP or fundraising for AP research?
Susan (AP 16 mos)
What about designing an open, web-based study such as Marshall has put together? He seems to have support from the FDA for his approach, and it doesn't get any cheaper than a web server.
Here's an idea – Write a book (sort of). Not a medically researched, I'm scared of the medical establishment or Oprah, book. Get everyone here with SD to write a chapter. Beginning, middle, and current descriptions of their disease and progress. You go to a “Vanity book publisher”. They publish your book for about $4000. Your book is listed at Amazon. You take your copies of the book (which you have to buy for the writer's price) to various doctor's offices, go to your local library and have a book signing, your local book shop and have a book signing… Sell them here at RBF, and have your friend bring it to her conferences and give them out to her contacts. Send one to Sanjay Gupta, Oprah, etc. Sell them at a smmmmaaaalll profit. Consider the remaining cost to you as a donation to your own non-profit scleroderma foundation. Give a shout out to RBF in the prologue…
It might work.
Hi John,
Actually you read my mind. I am designing the study so that it would be done via internet, phone, mail and not via the usual come to a research center and get evaluated (it's usually a pain just to park there!). I figure that it's the easiest way to get a higher sample size since SD is on the rare side.
The costs still go towards the time of the researchers and the compensation to subjects over time. My university would cover costs of phone and mailings.
Jenn, you've hit upon a great idea. I know someone who is already writing a book about SD and I've submitted my story to her. I don't know who her publisher is and where in the process it is, but I am sure she is going to mention RBF in her intro or first chapter.
I am trying to keep up with technology and have figured out how to get video files to my computer but haven't figured out if there are more steps to doing a You Tube video – anyone experienced with this?
Hi Jenn, Dolores who used to post here is writing a book.She got to remission from SD on AP in only 18 months and is now on MP and doing exceedingly well and is looking for people to write a chapter on their personal diseases and how they are doing with AP.You can contact her at martysfolks@hotmail.com Lynne G/SD
I think it's great that someone's writing a book.. but others can as well. Vanity publishing companies are all over the web. You write it, they publish it. It's really pretty easy. Your book goes on Amazon.
Gail, Thanks for signing up. What are your talents or interests? How can we get AP to be more credible or even presented as an option? Do you want to write a book as Jenn has suggested? I would love to write but between work and potty-training my 2 y.o. I dare not sign up for it! :roll-laugh:
Yes, my name is Dolores and I have been doing research for more than two years on the Antiobotic Protocol. Lynne was the first person to tell me about it. I was very ill and close to dying. The doctors told me that my lungs were fibrosed from Scleroderma and my disease was advancing at a rapid rate. They said that this was a terminal illness and all they could do was keep me comfortable till I passed. They offered me some very toxic medications which I refused. We left the office in tears. My husband would not be consoled. I went into seclusion and awaited my death. I was exhausted, anemic and broken hearted to see my husband's face all twisted with the pain of watching me die. I had lost 40lbs. Could not retain any food and cried from the pain. I could not go to the bathroom alone. My hands and legs just didn't work.
One day, I managed to sit in front of the computer and found the S/D Foundation site. I poured my heart out on their bulletin board. Lynne, who said she rarely ever checked that board, found my message and responded. I'll never forget those words. She said,” Hey girl, haven't you ever heard of A/P?” In my brain-fogged stupor, she told me about A/P, MP, and diseases I never heard of called TH 1 diseases. She bombarded me with literature and steered me to the RBF where people contacted me. I received names of A/P docs on my personal E:mail and in January '06, we were on a plane. The doctor prescribed Minocin (the antibiotic of choice) 100mg twice a day. Within a month, I was feeling stronger. Within two months, the Raynaud's had disappeared. By the third month, I was no longer anemic and had gained back 20 of the 40lbs., I had lost. I was able to remain out of bed for longer periods of time and even started cooking and eating again. At 18 months of therapy, I went into remission.
My pulmonologist, who had given up on me initially, nearly jumped out of her skin when she saw me again. She could not believe her eyes. The fibrosis in my lungs had stopped advancing. My O2 Saturation was 100% on room air… Her comment was, “well, we learn from our patients!” She had a wide smile on her face. She called a colleague of hers while I sat in her office and said, “I have a patient here who is doing well on Minocin and I am not changing a thing.”
On the 4th of July, my fibrotic bladder began bleeding profusely. The Urologist had to surgically remove the fibrosis. I had many specialist's who had never heard of A/P, but with each visit, I would leave a printout of the “Infectious Theory” and “Antibiotic Protocol!” I also carried my Scammell books and Dr. Brown's book with me. Not all were receptive or compliant. I dropped some doctors and found others along the way and soon I had a team. I continued to improve to their amazement.
As I started to heal, I saw that some of my other problems were also being healed. I cut all of my heart and diabetes medications in half and totally discontinued some because I didn't need them anymore. My organs were all healing and each blood test showed the improvement had continued at a rapid rate.
Today, all of my organs are healing fine. I work from my apartment in NYC, travel when I can and do all the sports that I love. My husband and I are on the committee for the S/D foundation walkathon. We counsel many people who are in the shoes I once walked in.
I am in the process of writing a book, not only my story, but a compilation of other stories. It is a book about us. I want the world to know about Scleroderma and all other TH 1 diseases. I want to spread hope. I want to let them know how we live, how we feel and how we cope. I have recieve many stories from many people. I want them to know that this wonderful body of ours is capable of healing itself. I know my immune system is now up and running just fine. I am a walking testimonial. My doctors will testify to this, in writing, to be inserted in the book. I also designed the cover with an art piece I painted. I am a published poet, but have never handled a project of this magnitude before.
My book is nearly complete. I want to publish it, but lack the funds because I have not asked for any. I am hoping to be helped by a benefactor. After expenses are covered, any proceeds will be directed towards research. Each person who has sent in a story will get a free copy. I have an R/V and am prepared to advertise and promote the book. I will be counting on the support groups all over the country to spread the word. I will do book signings in any book store that will promote the book.
I have been led to contact Lulu publications to help me publish this book. They contacted me yesterday. I do not yet know the cost of publication. If there are any publishers out there who would like to help publish this book, we, the Scleroderma, and Arthritis groups and Th 1 diseases communities would be most grateful. Some of the groups are starting to collect buyers in their communities who are interested in purchasing the book.
This book is dedicated to my first cousin, Louis Antonio Rivera, who passed at the tender age of 16 from Lupus Erythmatosis, in 1949.
Thank you all very much, Dolores Pasarell Rosner 02/23/08
Susan
There is some raw data up in Boston —perhaps you can work something out to obtain this data
also as a counter to this there are two tightly knit Native American Communities that have terrible rates of scleroderma and do not use antibiotic –perhaps this data can be obtained —Richie
Hi Richie, you are one of the people who are responsible for my return to good health. I think you are the same Richie that steered me to Boston. I don't know quite how to go about it. But you have my personal e-mail and please write to me and tell me what I can do. I heard about the tribes in , (I think Oklahoma) and the one in ( I think, North Carolina.) Are they getting better w/o antibiotics? Is that what you are saying? If so, do they have an Ancient Indian Herbal Therapy that we don't know about. I am very much into going further in my research. Thank you, for everything. It is nice to see your photo. One of these day, I'll learn how to get my photo up there too. Much obliged, Dolores P. Rosner (martysfolks@hotmail.com.
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