SD: AP is gaining ground

[Randy]

Hi Everyone,

I recently went back to the SD Foundation Inspire site to research one of the complications to SD. Needless to say, the site continues to be one of discouraging issues due to SD.

However, I was shocked to see a number their posts and threads about AP , mentioning doctors who are Rx’g AP, how well AP works, and many very positive comments about the RBF site (all of these just on the opening page!). I recall a few years ago when AP threads were removed from their site. Apparently, AP is gaining ground and credibility – rightly so.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Lynne G.SD]

Hey Randy;
How are youdoing these days?Long time no chat.As I said to Cali,we have been bombarding Inspire for years and it is finally getting through to them that AP is a good option.Ed Harris who is a researcher was ousted by them for the info he has on his site http://www.sclerodermainfo.org.What a wonderful man and just maybe he has figured out the Raynaud’s angle.Something as simple as Nattokinase might prevent the nailbed capillaries from dyingif caught in the beginning of the disease.Read his site,you will love it.Got supper on the stove,got to run

[Lynne G.SD]

Randy,I forgot to mention that there are about 60 Inspire members now on AP.Guess I’m slowly getting through to them and Cali post shoul really help

[Calida]

Hi Randy

I’m kellyann99 at Inspire – I had an account problem here and had to create a new ID – and Lynne and I tag team at Inspire when the small but vocal anti-AP group repeat misinformation over and over. Lynne has supplied many of the links to peer-reviewed published research that debunk the AP myths that pop up now and then. Lynne is amazing and indefatigable when it comes to educating people with SD. I think she may have underestimated the number at Inspire who are using or have tried AP, though, because I’ve found that there are quite a few who only check in once a year or so. The 60 she mentions are the ones who have frequently, over the years Inspire has been in existence, supported AP posts or spent time documenting their progress at the site. It’s possible the number is well over 80. And all their roads lead back here!

All the best,

Cali/Kelly

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[richie]

Hi Hats off to you folks !!!!!!!!!!! I certainly wouldnt do it !!! my approach is -I tell someone once about AP –if they want more info -I am glad to provide it and help –if they dont –I just move on and figure its their loss !!!!!!!!!!!!!!!! You folks are persistent -hats off !!!!!!!!!!!!!!!!!!!!!!!!!!!!
richie

[Lynne G.SD]

Thanks Richie.I am one heck of a hard headed Capricorne and worse yet,it’s rubbing off on Cali. hehehe

[Calida]

Thanks Richie! I can’t speak for LynneG but my AP posts are less evangelical and more about correcting misinformation and documenting my progress once in a while so that others can have a sort of “real time” peak into the process. Outside the forum I, too, mention it once and let my recovery/appearance speak for itself. After that, it’s up to the person to follow up with me if they’re interested.

And Lynne, my sign is Cancer. Once I get my claws into something…… 😆

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[lajc]

All I can say is “Hooray” for Capricorns and Cancers because ya’ll are a great team and you encourage and inspire so many with your insight and knowledge….me included! And the fact that you don’t back down when others constantly challenge you makes me a huge fan !! Ya’ll Rock !!

Laurie

[Schulz]

HI kelly. I love your posts at inspire. Can you please explain to me what Azithromycin is? My dad has SD. Should we be taking that too?

[Calida]

@Schulz wrote:

HI kelly. I love your posts at inspire. Can you please explain to me what Azithromycin is? My dad has SD. Should we be taking that too?

Yikes! So sorry, Schulz, I just saw this question. It was away during August and finally catching up now. I haven’t forgotten about the mino-anti-fibrotic paper but still haven’t organized my links and haven’t a clue as to where I filed it. It will turn up as I continue to dig.

As for the zith, my doc is a Lyme doctor and uses azithromycin as a “biofilm buster”. He chose to start my treatment in the belief that biofilm colonies are a problem for me since I tested positive for Lyme. He may have a different approach for someone like your Dad because treatment is based on the individual, not a one-size-fits-all basis.

Has your Dad tested positive for Lyme?

Cali

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

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