Scleroderma Foundation Magazine

[Cheryl F]

For those of you who saw my post on another thread telling about the article in the current issue of the Scleroderma Foundation magazine, I need to retract my comment. I had said that the article did mention the treatment that Jessica under went to recover. This WAS true in the final version of the artcle that was sent to Jess
and I for approval. BUT, all reference to “antibiotics” was removed before it went to print. In my earlier post I had somewhat defended them and asserted that this was evidence that they were becoming more open minded to this effective treatment. I WAS WRONG!

Cheryl

[mkbeeliever]

What the heck?  How could they do that?  So disappointing Cheryl! :headbang:

[judy cash]

Cheryl,

This is unbelievable!!!!!!!!I can't believe that they can do that.. How dare them….

I really feel sorry for all the sick people out there who will never find out about AP, because of things like this……. Thats why its so important for us to spread the word ourselves.

GOD BLESS DR BROWN!!

Judy

[Trudi]

[user=2]Cheryl F[/user] wrote:

BUT, all reference to “antibiotics” was removed before it went to print.

This is absolutely disgusting!!  So what did they say cured her?

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Randy]

“Gee, another spontaneous remission!  … Well, that's just not supposed to happen.  Why are we even including this article about someone who recovers? “

Blast the bastards!

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"

[JOJO19551]

I did not receive my  copy yet, but, I think we should all write letters to the editor to voice our concerns with the omission of the facts.  We are paying to be in their organization!!  JoAnn

[mkbeeliever]

Cheryl,

:angry:  The more I think about this the more irritated I become.  I just went to that INSPIRE bulletin board (I hate reading the posts on there, so depressing!)  and it hit me, that maybe you should post about what happened…The people on that board  need to know that they are being kept from a treatment that might help them.  It's censorship and a slap in the face to all of these sick, sad, hopeless people.  BETRAYAL is the word that keeps popping into my head.  So mad I could spit…:angry::angry::angry::angry::angry::headbang::headbang::headbang::headbang:
I need a glass of wine and it's not even 3pm yet! 

Blessings,
Michelle

[Kim]

Boy, this really makes me hot too.  :angry:   Were they so desperate to run a success story and couldn't find any who had gone the “traditional” route that they had to deceive you? 

Cheryl, do you have a link to the article?

Take care…….kim

[JeffN]

While unfortunately I am not very suprised I am disturbed by the SF treatment of Cheryl and Jess. I would have thought some sort of conversation should have taken place with you guys after the editior of the Voice decided or was instructed to drop any mention of AP. Don't you think a heads up or maybe “hey this is what I have to do – do you and Jess want to go ahead with the article or not”. This episode is just silly but oh so typical of the SF.

[Cheryl F]

Honestly, I am not sad or disappointed.  They have a right to edit their magazine the way they choose.  However, they did send us the copy of the article and said that “it was going to print.”  But I don't really think that it was in any way intentionally deceptive.  I think the editor/writer created the story and then higher ups did the edits after she thought it was ready to go.  She probably doesn't usually get edited, and she probably didn't know that antibiotics were “persona non grata” at the SF Foundation. 

To tell you the truth, honestly, once they asked Jess the question of what treatment she did, and she answered that she used minocin (this was a strategic and mom coached answer), I didn't think they would even run the story. 

But hey, maybe, even without knowing what treatment she did, it will help people search out all of their options, and then, if they find us, you all will be here to share your stories of success and they will know that AP is neither a hoax nor a fluke.

Cheryl

[whaleharbor]

Cheryl, what an amazing positive outlook on the situation you have.

I guess all we can do it keep talking and hope that others find out about AP.

– – whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Joe M]

So if everyone writes a letter to the editor, they will surely run a correction or at least an editor's comment on why antibiotics were edited from the story?

[richie]

Hi–They wont run any correction –in fact this action is not a surprise  to me -in fact this is definitely to be expected from the SD Foundation –I am not surprised not all —

Richie

[lynnie_sydney]

Cheryl – great that you can be so sanguine about it. Let's just hope it sparks curiosity and some find their way here or to rheumatic site. 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)

[BrendanG]

Sounds like a conspiracy theory in the making.  Either this or the SF are more interested in telling us what they think doesn't work rather than what does.

Send em Randy's photos and let them choke on them weeties (An aussie phrase!)

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