Re: How to approach my rheumy?

[Guest guest]

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

[Guest guest]

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....

[Guest guest]

,

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

[Guest guest]

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

[Guest guest]

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.

[Guest guest]

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

[Guest guest]

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

[Guest guest]

> > 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 --