Lets nominate Road Back as the best blog!

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Lets nominate Road Back as the best blog!

Postby niteowl » Wed Jan 02, 2013 2:12 pm

After seeing this request on RAWarrior's blog to be nominated for best blog, let's nominate the Road Back Blog to raise awareness on AP instead! Here's the link: http://www.healthline.com/health/best-h ... gs-contest

It doesn't require you to submit your email or any other personal info. which is nice. Supposedly there is a $1000 cash prize that I would prefer went to a really useful blog like this one.
Diagnosed RA, Sjogren's, June 2012
Minocycline 100mg BID started Oct 1, 2012
now QOD
Voltaran gel 1% when not taking Naproxen 500mg
Iron supp Sat Sun
coconut water 8oz BID
Levoxyl .137mg qd
Soma at nite PRN
Vicodin for pain as needed
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undiagnosed Lyme in 2000?
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Re: Lets nominate Road Back as the best blog!

Postby Suzanne » Wed Jan 02, 2013 5:30 pm

I would love to nominate this board for an award, but I'm thinking it doesn't qualify as a "blog".
Suzanne - mom of 11 yr. old daughter w/poly JIA; dx 4/05; AP 8/06; current meds 250 mg Zithromax M and F.
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Re: Lets nominate Road Back as the best blog!

Postby niteowl » Wed Jan 02, 2013 7:13 pm

Hhmm- Just trying to think of a way to inform the masses. I keep thinking of Sir Paul McCartney who said that if you repeat a melody enough it becomes a hit. There's got to be some way to get people thinking...Facebook page?
Diagnosed RA, Sjogren's, June 2012
Minocycline 100mg BID started Oct 1, 2012
now QOD
Voltaran gel 1% when not taking Naproxen 500mg
Iron supp Sat Sun
coconut water 8oz BID
Levoxyl .137mg qd
Soma at nite PRN
Vicodin for pain as needed
non smoker
Fifth Disease in 03
undiagnosed Lyme in 2000?
Weekly Allergy serum shots
Yoga 3-4X week
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Re: Lets nominate Road Back as the best blog!

Postby Suzanne » Wed Jan 02, 2013 7:59 pm

I think a Facebook page is a great idea! I know you can have 'groups' and 'communities', too, but those would take some moderation. A page with links to this site and other info would be something that RBers on Facebook could 'like' and have on their own pages.
Suzanne - mom of 11 yr. old daughter w/poly JIA; dx 4/05; AP 8/06; current meds 250 mg Zithromax M and F.
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Re: Lets nominate Road Back as the best blog!

Postby Jan Lucinda1 » Wed Jan 02, 2013 11:54 pm

I wrote to my university Alumni Magazine that I was a participant in the Roadback Foundation bulletin board and that RB seeks to inform the public about the benefits of antibiotic protocol for rheumatic diseases. Others could do that.
dx RA '08
start AP 8/10
Plaquenil 1/12
restart AP 9/12
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Re: Lets nominate Road Back as the best blog!

Postby niteowl » Fri Jan 04, 2013 9:53 pm

Suzanne - Maybe One of the Moderators here might consider fb as a option to spreading the word?
Jan- That is a good idea, too. I also wonder if letters to the local newspapers would help. I may try both.
Diagnosed RA, Sjogren's, June 2012
Minocycline 100mg BID started Oct 1, 2012
now QOD
Voltaran gel 1% when not taking Naproxen 500mg
Iron supp Sat Sun
coconut water 8oz BID
Levoxyl .137mg qd
Soma at nite PRN
Vicodin for pain as needed
non smoker
Fifth Disease in 03
undiagnosed Lyme in 2000?
Weekly Allergy serum shots
Yoga 3-4X week
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Posts: 33
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Re: Lets nominate Road Back as the best blog!

Postby Maz » Sat Jan 05, 2013 6:44 pm

niteowl wrote:Suzanne - Maybe One of the Moderators here might consider fb as a option to spreading the word?
Jan- That is a good idea, too. I also wonder if letters to the local newspapers would help. I may try both.


Hi Niteowl,

Thanks so much for kindly thinking of ways to get the word out about the foundation. Facebook may be a future option, but currently we just don't have the volunteer manpower to deal with the thousands who approach the foundation at the moment. RBF needs volunteers who are willing to help man things here before we can extend RBF's reach further outwards. That said, it's not out of the question that at some stage the board of directors may consider setting up an official RBF Facebook page where research and info can be loaded for informational purposes, but without the posting capability of such an external medium, because an interactive FB page would require close moderation similar to this forum. The foundation actually prefers that those interested in the therapy to visit the main website in order to get fully informed and educated about the treatment before diving in, because it's not always a straight line to remission and seeking an experienced physician to help with the journey can, in many instances, be a critical element for success to be achieved.

Road Back is in the early stages of discussing how best to revamp the main site and, once the strategic planning and finances are in place to move ahead, having options on the main page to Twitter and "Like" on Facebook may also be options.

Letters to local papers are a great way to spread the word about the treatment, hopefully when a person has reached remission and can tell a credible story of success. Cheryl Ferguson's daughter did this with her local paper a couple years ago:

http://www.theloomisnews.com/article/je ... challenges

A wonderful way to pay-it-forward and to spread the word is for someone who has recovered from their rheumatic disease to write a testimonial for the main site, but also to contact their local media, just like Jessica Ferguson has done.

Another great thing some have done is to do fundraisers, such as the NYC Marathon Fundraiser that Judith set up a couple months ago. People have got T-shirts made for these events and there is a brochure that can be printed from the main site to hand out. Some people will keep these in their pocketbook to hand out in their rheumy's waiting room or to leave on coffee tables.

http://www.roadback.org/index.cfm/fusea ... id/31.html

In a nutshell, volunteers are spread so thin just keeping up with daily physician requests and posts on the forum from newcomers. If anyone is out there who has some free time and is interested in lending a hand, let us know, because there may be skills or knowledge that could fit right in with what the foundation needs for moving ahead. When I began volunteering, my biggest fear was that I wouldn't have enough knowledge to share with others, but this isn't all that is needed. Just folks who are willing to welcome newcomers to the forum and to become familiar with the rationale for the therapy (Henry Scammell book and the main site) in order to answer questions or, initially, just from personal experience. Volunteers don't need to have any special medical background or experience, just a will to extend a friendly voice to a fellow-sufferer, because lots of experience is gained on-the-job, so to speak.

I hope this helps to explain a bit, Niteowl? Thanks again! :)
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 500mg BID re-started 11/5/13 (dose increased to 500mg BID on 7/3/14
Compounded Liposomal Artemisinin ("Artemisinin Essentials") restarted 7/3/14, 2 caps twice daily, 5 days per week for 3 weeks each month with 7 days off
Ivermectin 2mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione, compounded topical progesterone.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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Re: Lets nominate Road Back as the best blog!

Postby niteowl » Mon Jan 07, 2013 11:42 pm

Thanks Maz,
That is a great idea to print out brochures to leave out. My biggest fear would be that I don't have much experience with the other areas of Rheumatoid Disease besides RA and Sjogren's - and even then I only know what I know from my perspective! But if I can help in welcomming or something similar, let me know.
When I have completely finished this Road Back successfully, you can bet I'll be writing to my local newspapers! This week I'm able to hold my paint brushes pretty well, so that alone is a big advancement. Now to find a comfortable seat!
Diagnosed RA, Sjogren's, June 2012
Minocycline 100mg BID started Oct 1, 2012
now QOD
Voltaran gel 1% when not taking Naproxen 500mg
Iron supp Sat Sun
coconut water 8oz BID
Levoxyl .137mg qd
Soma at nite PRN
Vicodin for pain as needed
non smoker
Fifth Disease in 03
undiagnosed Lyme in 2000?
Weekly Allergy serum shots
Yoga 3-4X week
User avatar
niteowl
 
Posts: 33
Joined: Mon Sep 24, 2012 3:07 pm


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