Getting AP Out of the Closet

[zoofie_85]

[user=31]Lynne G./SD[/user] wrote:

Hi zoofie;
    Now I think I understand you.It is HARD when neither of us is speaking our language. ha ha ha;
    What I meant about MCTD is hard  is that you are just at the beginning of the disease.Most people with MCTD either have Lupus or Scleroderma symptoms with it.They usually show up after a few years.My sister has MCTD with Lupus overlap.I just have plain old SD.
   I know you are scared about diabetis and prednisone.You will eventually have to get off of the pred but must only reduce it in tiny amounts over a period of several months or you will damage your adrenal glands.I was on pred 5mg for a couple years.I now have osteoporosis and very thin skin.If I just rub it hard it will tear because of it.I wish I had known before what it would do to me.If I had to do it again I would take methotrexate at the lowest dose possible and not the pred.By the way,after 2 years the pred did not work anymore.

hhaha ok 😉

Well, yes but my doc said that im not having lupus or Scleroderma , they think i will stay on diagnose: mctd…. they even say it can gett better…. but im not so sure about that,

i will reduce the pred slowly… the pred hasnt change my skin or bone…….yet.

i will ask my doc if there are somthing else i can take instead of pred! =) i hope it is! maybe that MSM? I wonder what that is in swedish

[A Friend]

[Edit… Maz, I saw your post after I'd written the reply below — at which time it occured to me just how much work this would be for those closely involved.  I must add, as things are today on RBF & RBF BB, there is a world of help for those inclined to “seek, find, read, educate ourselves, etc. on AP.”  I also must add, that we have one of the most dedicated and knowledgeable group of moderators I could have possibly imagined a few years ago.  And let me add further:  I thank God every day for all of you.  I see people getting the information they need in a very caring, comforting manner, and encouragement to try to find the help they need.  (Below was an enjoyable daydream, anyway.) AF]

Dear Maz, Sharon, All,

I'm thinking it's time for another AP conference such as were held several times when I was new to AP.  Am thinking it wouldn't do any harm if a letter were sent to those respected AP physicians, asking them if they would be interested in attending such a meeting.  (They may not want to “rock the boat” and may even be too busy. But it doesn't hurt to inquire???)

Also, (daydreamer me…) If all of the patients who have been helped by AP were also included in the invitation to attend, we could have a national convention with doctors and patients.  Some sessions could be open just to doctors, some to patients, and (again dreaming…) some with both doctors/researchers, etc. and patients.  

About 1997-1998, an AP rheumatologist not far from L.A. planned a conference and invited AP patients from all over to attend.  Might it be good to ask this same physician what his thoughts are about a repeat conference?  What he has to say, in my opinion, would carry a lot of weight, since he is very good and has had a lot of experience in these areas.   

Also, back when I was brand-new to AP, several national medical conferences on AP were held around the country.  The timing for the one in Los Angeles was coming up just as I learned about a new doctor in town, who had even mentioned treating fibromyalgia on his card (given to me by a health store employee).  That caught my attention.  I didn't have FM, but I had already begun to know that Dr. Brown's work was effective for FM as well as the other rheumatic diseases — and I'd already been to Ida G and knew AP was working really well!  I shared the MD's card with a co-leader  in our local  group, and she was excited and said she was going to make an appointment — she did have FM.   At that time, I had just begun to mention to those in our group about my being on AP (AP was Greek to them) …. I was waiting to make sure it was working before I mentioned AP to anyone.  She made an appt. with this new physician and said she wanted the treatment her friend (me) was on.  He asked her to have me send him information on AP, and I'm sure I sent him a lot. 

He learned about the upcoming AP conference in L.A., went to it, and before long, people were coming from all over to see this physician. 

Sometimes what we share will begin a chain-reaction.  Sometimes it will fall on deaf ears. 

But, we can't quit trying — and perhaps it's time to “think outside the box” again!  

AF

[Dan_M]

[user=27]Maz[/user] wrote:

In all honesty, the best testimony of AP working is to get one's self into remission first to be a living emissary……

So to put it another way, the best strategy to get the word out about AP is to follow the same advice that's given as to how to approach AP itself: “low and slow”. Right? 😉 

[Maz]

[user=1465]Dan_M[/user] wrote:

[user=27]Maz[/user] wrote:

In all honesty, the best testimony of AP working is to get one's self into remission first to be a living emissary……

So to put it another way, the best strategy to get the word out about AP is to follow the same advice that's given as to how to approach AP itself: “low and slow”. Right? 😉 

Hi Dan,

LOL Yes, nice metaphor! :roll-laugh:

If this helps to expand a little further, what I was meaning was really two-fold in that the Road Back Foundation was actually founded for the purpose of preserving Brown's life's work – by ensuring that his treatments would remain available to future generations of rheumatics and that subsequent research validating his work could be documented to help patients and physicians who wish to pursue the therapy. So, in effect, the optimal way to get the word out is to actually support the foundation that supports the therapy. Bascially, the foundation's presence is only as big as APers wish to make it and a good way to have a voice is to volunteer and learn how to help bring about the foundation's mission, vision and goals. 

The second part of this is that for many patients it's, naturally, a huge relief to find Road Back and to know there is this treatment option available when given such a devastating diagnosis. As I reminisce, the relief I know I felt in the early days about finding antibiotic therapy, quickly morphed into a sense of indignation, asking “Why isn't this more widely known?” and “How can I help to get the word out?” Yet, as a patient who was very sick, the reality is that I don't think anyone would have taken me seriously as a spokesperson for the therapy – would be a bit like a 500lb salesman trying to sell the health benefits of Hershey bars. I needed to learn as much as I could about antibiotic therapy, while keeping my focus on getting well again, to have tangible experience that it was working for me before I could, in all authenticity, support promoting it.  

Road Back's mission has always been to “get the word out,” by attending and holding conferences, by distributing newsletters, by maintaining physician lists to distribute to those choosing AP, by manning a discussion forum to provide peer support to APers, by maintaining a web-based presence on the net to provide educational resources, to provide financial grants to support researchers looking into infectious causes for rheumatic diseases, etc, etc. However, none of this can be acheived without the support of the people choosing AP, both in the shape of donations and manpower….it's a site run by APers for APers.

So, you're right, Dan…the approach can seem like a “low and slow” one – we're just volunteers, after all….and the pace of forward motion can only ever be as swift as the support the foundation receives in a kind of ongoing circle of giving, giving back and paying it forward. 🙂

Hi A Friend,

Thank you for your very thoughtful, kind words above…I know all the volunteers deeply appreciate your presence here, as a longstanding forum member and support to the foundation in days past – I certainly do – it was your “generation” of APers who kept things alive for this one! Conferences are an ongoing agenda item and, when the finances and skilled helping hands allow, the goal is ever-present for there to be many more in the future. For now, the website is in the beginning planning stages for a major facelift and, as the foundation is primarily web-based with the site as its major outreach tool, this is a major focus….a huge undertaking, as you might imagine. Thanks, again, AF. Your input is always valued.

Peace, Maz

[redrock]

I think patients can be the AP's worst enemy. I posted a question about AP on a scleroderma website (not the one I reported previously, that banned my post, but another) and immediately the moderator came back with a link to a study that she said definitely proved AP did not work.  Some people might take that as gospel and write it off completely. When I said I was going to try it anyway, she came back with a snarky response and said that if it wasn't for Big Pharma, no one would be able to help me with my pulmonary hypertension because it is so rare that I'd be all alone.

People are very invested in their treatment beliefs. It's like arguing about politics or religion. I just want to get well. Whatever works.

[Dan_M]

Red, you sure hit that right on the money with this being like arguing politics and religion. And that got me to thinking that throughout history, the way many religions have converted people is by showing them a 'miracle'. So what you need to do is GET BETTER.:) And then at some point in the (hopefully not too distant) future, you can go back to that website and present yourself to that snarky moderator as living proof that AP works. 😎 

I hope you get better soon.

[Author]

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