"More Stuff That Doesn't Work For Scleroderma"

[Suzanne]

http://rheumination.typepad.com/rheumination/2010/03/more-stuff-that-doesnt-work-for-scleroderma.html

From a rheumatologist blogger who seems like a nice person, so perhaps some of you might be interested in commenting on this post:

“I hate scleroderma.  I think I may have mentioned this before.  It seems that nothing seems to work in this condition, not even for the non-life-threatening but life-sucking symptoms like digital ulcers and calcinosis.”

Use the link to read the whole article.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

WOW! Great find, Suzanne! See some posts have already winged their way to this rheumy's blog to change his mind about scleroderma being a hopeless disease. Hope more APers go there and tell their story, too.

Thanks for sharing this – you really do find some terrific stuff, Suzanne. 😀

Peace, Maz

[lynnie_sydney]

Great posts Margaret and Cheryl. Understated and intelligent. A few more open minds in the rheumatological field would be great, even better a few SD patients who may read that BLOG and your comments. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Just added my comment too. 😉

kim

[lynnie_sydney]

And another! :dude: Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[BeatingRA]

Kim, Cheryl, Margaret,

Great comments!

Theresa

[mschmidt]

As did I–thanks Suzanne for the link!

[mkbeeliever]

My two cents are in!
:roll-laugh:

[Conniel7777]

Count mine as added as well.  🙂

 

 

Connie   >^..^<

[luvmywonderfulkids]

Mine too!

Sue — Ryan's Mom

[Wayne]

Hi to all,

Just added a post to that blog as well. The benifits of AP is reaching more and more people, and that is so good to see.

Kind Regards Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[1Aggie]

I just posted my two cents too!  Thanks for the info!

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[vonni]

My comments are there too!

[Suzanne]

He has responded to the comments with a new blog (I told you he seemed like a nice person!):

http://rheumination.typepad.com/rheumination/2010/05/index.html

(I'm assuming it is a 'he'.)

He also posted this in his comment on the first blog:

“Feel free to continue the discussion. I'll be reading.”

Very nice!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Peach73]

oh boy…I went and read this and there are two comments made by people against AP for scleroderma…..one even went as far as to call roadback a cult.   Amazing….

[Author]

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