Guest guest Posted May 20, 2001 Report Share Posted May 20, 2001 You have to it just like that, you tell them that you are tired of taking all the drugs and that you would like to try another approach. I know at my last visit, I told my rheumy that I wanted to be put into physical therapy because I felt that the drugs alone weren't doing it. I start on Tuesday! Good luck and remember, they work for you... D in MN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Well , I posted just about exactly the same question over on the public forums of the Road Back Foundation web site a couple of weeks ago, and Marge gave me the advice below. Note: I've corrected some of the wording, because she had apparently written it in a hurry, and as a newcomer I didn't thoroughly understand what she meant at the time and wasn't really familiar with the site. > Hi and welcome! > Please go to the " Tell Your Story " part under Online Support > and read 's story about PA - it is most inspiring. I am of > the opinion to take factual things to him. The studies are very > important to docs. Under " Studies " print them out. Then, under > journal articles look and see if there are PA ones (there might > be [Note: There aren't - Ron]). Also under articles, there is > " News in Research " - there are 3 of the newer articles there. > Print them out too. Then, take the " Protocol " as it answers > many questions and lastly take TIPS and Getting started > (Under self advocacy) as it will give you and Him the most > important facts to know. > Marge I know the people there mean well, but in my opinion the Road Back Foundation's web site is just about the worst I have ever seen anywhere on the internet. The first thing it does is to resize your browser's window down to a little tiny square, and then starts throwing up warnings and disclaimers which you have to click " Ok " on to get past almost every time you change web pages. Maybe the Road Back Foundation thinks it needs them as protection from liability, but if it were up to me I'd ditch them. The web site's structure is intentionally designed to hide information. Most of the pages (but not all, strangely enough) are embedded within frames that cannot be broken out of, thereby making it impossible to give a simple URL to the location of their documents. Any decent website will provide a non-frames version of the site for older browsers, or for those who just prefer not to use frames, but not this site - if your browser doesn't support frames, well tough luck Charlie, you're just S.O.L. Misspellings of common words abound and are an embarrassment - I would be ashamed to refer my doctor to the web site. Even the user forum is awkward to navigate. In all fairness, I realize that it is a totally non-profit all volunteer organization, and I'm sure the " staff " there is extremely overworked particularly in view of the fact that they probably all help out in their spare time, but they are (no doubt unintentionally) doing a disservice to their cause. I'm trying to think of a polite way to get them to change things, but as a newcomer I doubt that anyone would listen to me - for that matter, I don't as yet even know who to discuss it with. Having said all that, here's what I ended up printing out - two copies each, one for me and one for my doctor, which I sent to her a week before my appointment. These particular articles can be linked to, and you should be able to get to them just by clicking on the links below, although with the Road Back site it's anyone's guess whether or not the links will work for you. If you have any trouble getting to them, let me know and I'll just email the articles to you. There are also lots of other articles that you can browse through on their pages if you wish to do so. 1. " Studies Have Proven Antibiotics Safe And Effective " at http://www.roadback.org/studies.html 2. " Getting Started with Antibiotic Therapy for Arthritis " at http://www.roadback.org/selfadvocacy/getstarted.html 3. " The Physician's Page - Some Common Arthritic Drugs that Are Contraindicated for Use with Antibiotics " at http://www.roadback.org/articals/phy_pages/v2n1/CommonArthriticDrugs.h tml 4. " Using Antibiotics for the Treatment of Rheumatic Diseases - Some Questions and Answers for Patients " at ftp://www.roadback.org/pub/pdfs/q & a.pdf 5. " Protocol for Using Antibiotics in the Treatment of Rheumatoid Disease " at http://www.roadback.org/protocol/protocol.html There is also another article called " How to Approach Your Doctor about Providing Antibiotic Treatment " but I'm not able to provide a link to it because of the problems I've mentioned above. I have however, uploaded it to our own PA web site at /files/HowToApproachYourDoctor.p\ df You may see a reference in it to a " Physician's Packet " for $30. No such thing exists as far as I know. I asked someone about this (I think it was Greenly in one of the posts here on this site) and he said it is no longer offered for sale, but is available on the Road Back Foundation web site. Well, good luck trying to find it - if you are able to do so, please let me know as I would like to have a copy myself. You may also want to print out " my story - PA " by Greenly, 3/16/01, at http://www.roadback.org/RBFStories/readstory.html (That by the way, is our very own Greenly who posts here, and is responsible for getting me started with the antibiotic therapy - Thank you ). I also purchased a copy of the book " The New Arthritis Breakthrough " by Henry Scammell (ISBN 0871318431), and after reading it myself I took a copy of it to give to my doctor during my office visit in hopes she might read it as well. I don't know if she will read it or not, but she did (reluctantly) agree to let me go off Methotrexate and prescribed Minocycline. It was kind of funny in a way, because for once she actually asked *me* what I wanted to take. I told her 100mg of minocycline three times weekly (100mg Mon, Web, and Fri), and that's what she wrote the prescription for. So I urge you to make sure you know exactly what it is you want your physician to prescribe and how much. I would have been *very* embarrassed if she had asked me what I wanted to take and I hadn't had an answer. I was very impressed with my rheumatologist, and when leaving, smiled and mentioned that I had expected her to put up a " fight. " She answered that she is actually very open to new therapies and is happy to have an educated patient! So all in all, it worked out much better than I had expected. Both I and my doctor probably have a little more respect for each other now. One final thing - if your doctor *isn't* as agreeable as mine was, Marge at the Road Back Foundation (I'm not sure what her email address is, but she frequents the user forum) has a list of doctor's who are familiar with, or at least are willing to prescribe, the antibiotic treatment. Be warned however, that it's unlikely there will be one nearby. Some of the people on the Road Back forum said they have had to drive anywhere from 4 to 9 hours to the nearest doctor on the recommended list. Best of luck with the new therapy. We are both pretty much in the same boat, because I only just started Friday (5/18/01) myself, -- Ron > You guys have any suggestions on how to approach my rheumy (doctor) > about trying anti-biotic therapy... I really want to try this > " Doxycyline " out ..... I've heard alot about it on this group and > others...... If he says " No " , Then i'm going to walk right out > the door.. Because being 26 years old , I dont want to be taking > all of this NSAID crap thats going to destroy my liver over a > long time.... I already know alot about what these > medications do to us internally.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 , Unfortunately the link I provided for " How to Approach Your Doctor about Providing Antibiotic Treatment " was too long to fit on one line, and truncated it. I will try again here, but if it still doesn't work, go to the main PA web page at and click on the " Files " hyperlink over on the left hand side of the page. Then look for the PDF file " HowToApproachYourDoctor.pdf " Click on that and you should be able to download it. Here is the link again: /files/HowToApproachYourDoctor.p\ df Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 hello, i am from boston mass and go to a doctor at beth israel in bosto n . it is common therapy for people around here to be on that antibiotic therapy. minocin is the brand name and works a little better than the generic doxicycline . i have been on both . the problem is it can take up to six months to work even longer. you probably have to stay on another drug till it kicks in [if it does ].it can be discouraging but if it does work people say it is like a miricle drug. unfortunately it only helped me a little aned i stayed on it for two years . it has become the drug of coice for people with scleraderma and i understand it is like a miricle drug even putting people in complete remmision. i don't undrstand why the doc wont put you on it . stand up for yourself and tell him you want to try it good luck. cathy from mass Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 NJ - My rheumy told me that the antibiodic theory seems to go in and out of popularity in PA therapy periodically. She told me she'd be willing to try it if I wanted to. If your rheumy is resistant or never heard of antibiodic treatment, I'd seriously consider switching doctors. Whatever you decide about meds and treatment, good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 on 5/21/01 2:27 AM, Ron S Dotson at rkba@... wrote: > I know the people there mean well, but in my opinion the Road Back > Foundation's web site is just about the worst I have ever seen > anywhere on the internet. hmmmm...neither me nor my doc has had any problems accessing and understanding the site. Maybe it's the browser you are using? If you think it's really that bad of a site, offer your talents and time to the organization to improve it. deano Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 Yep, I plan to do just that as soon as I have some spare time. Not sure who I should contact though, or how to tactfully go about it. Henry or Marge perhaps? -- Ron > If you think it's really that bad of a site, offer your talents > and time to the organization to improve it. > > deano Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 > > If you think it's really that bad of a site, offer your talents > > and time to the organization to improve it. > > > > deano Hi Ron- I want to thank you very much for your posts about the Road Back Foundation (RBF) website. When I read of your frustrations with it, I looked through it myself. The site was expanded and redesigned completely about a year ago, and I got all my info off it before that, so I had only been using the bulletin board on the new site. Though I didn't have trouble accessing anything on it, I agree completely, Ron, that it is poorly organized. There is no such thing as a simple " doctor's packet " of information anymore, you have to pick and choose for yourself from all the materials scattered around the site under various headings. I am going to put a message about this on the RBF bulletin board, and see if they could improve it. I want to be able to steer people to the site, and have them easily find the most clear and persuasive set of materials to take to a doctor. Ron, I think you could put a message on the RBF bulletin board too, or send email to Marge@... or Henry@.... I think constructive criticism would be very much appreciated, because they (and I too) are so anxious to help people find out about and get access to this treatment. If you could help out (it's clear from what you have written and done already that you are a net- and computer-savvy person and a good writer and would be a very valuable resource) that would be really great! again, thanks, and best regards -- Quote Link to comment Share on other sites More sharing options...
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