Terrible statement on sclero.org website

[redrock]

I have CREST, which was merely bothersome until recently, when I discovered I have advancing pulmonary hypertension. So now I am desperate to get on the AP treatment in the hopes that treating the CREST will help the PH. I've been researching online probably 4 hours a day and coming across all kinds of things. Already I am scheduled for an appointment with a (hopefully) AP-accepting doctor, yet my inquisitive nature forces me to continue to learn everything I can.

Which caused me great alarm and annoyance when I came across this statement posted right on the sclero.org website:

Warning: Minocycline (doxycycline) treatment has been proven to be ineffective for the treatment of systemic scleroderma by reliable scientific study.

Now I know all about the fact that the conventional medical community does not embrace AP, but why the alarmist statement? I posted a question on the site, asking if anyone had had success with AP. My post was never approved, did not appear, and I received no comment from the moderators. Further research into the site shows they have this view:

Mainstream Scientific We focus on proven remedies and legitimate studies from mainstream scientific studies, as covered on our main http://www.sclero.org website. We avoid discussions of vitamin,herbal and alternative therapies that have not yet been proven to be of benefit for scleroderma

It is very alarming to me that my post was rejected and that they in fact tried to silence me from asking about AP.

I am wondering if sclero.org is funded by the pharmaceutical companies. I think it is criminal that they would actually ban a discussion that is not inflammatory or abusive to its members.

[Cheryl F]

[user=2547]redrock[/user] wrote:

I have CREST, which was merely bothersome until recently, when I discovered I have advancing pulmonary hypertension. So now I am desperate to get on the AP treatment in the hopes that treating the CREST will help the PH. I've been researching online probably 4 hours a day and coming across all kinds of things. Already I am scheduled for an appointment with a (hopefully) AP-accepting doctor, yet my inquisitive nature forces me to continue to learn everything I can.

Which caused me great alarm and annoyance when I came across this statement posted right on the sclero.org website:

Warning: Minocycline (doxycycline) treatment has been proven to be ineffective for the treatment of systemic scleroderma by reliable scientific study.

Now I know all about the fact that the conventional medical community does not embrace AP, but why the alarmist statement? I posted a question on the site, asking if anyone had had success with AP. My post was never approved, did not appear, and I received no comment from the moderators. Further research into the site shows they have this view:

Mainstream Scientific We focus on proven remedies and legitimate studies from mainstream scientific studies, as covered on our main http://www.sclero.org website. We avoid discussions of vitamin,herbal and alternative therapies that have not yet been proven to be of benefit for scleroderma

It is very alarming to me that my post was rejected and that they in fact tried to silence me from asking about AP.

I am wondering if sclero.org is funded by the pharmaceutical companies. I think it is criminal that they would actually ban a discussion that is not inflammatory or abusive to its members.

Redrock:

Yes, sclero.org is most definitely highly connected with pharmacuticals companies.  You are not the first one that they have silenced.  I contacted them several years ago, actually exchanged emails with the organization's president.  She told me that my daughter's recovery was more likely a “spontaneous remission” and she pushed the study that supposedly proved that minocycline is NOT effective for scleroderma.  Our very own RBFBB member Susan (SD) obtained the data from that study done by Dr. Maureen Mayes.   Susan has a background that allowed her to fully analyze the results data and the study methodology.  Susan's analysis provided a significantly different outcome.  I suggest you send Susan (user name: Susan (SD) ) a PM on this system and ask her to share her findings with you.

The woman who founded sclero.org was an amazing advocate for scleroderma patients, the current president was a close friend of hers, they just cannot accept that this treatment might have made a difference.  Richie, I beleive, years ago may have also had an interaction with this organization, hopefully, he will share his experience, IF I am correct in my memory.

You are correct, it is criminal that they would so activiely disuade patients from trying this potentially lifesaving therapy.  The pharmaceutical companies have millions in revenues to market all of their “PRODUCTS.”  The antibiotic protocol treatment has NO FUNDING what so ever.  RBF doesn't even receive enough in donations to meet the small costs of keeping this website up and running, there are no paid staff, all volunteer.  So, to say the least, we cannot compete.  All we can do, is (try) to keep the information available on the internet so patients can find it, then, if they choose this therapy, we can point them towards a doctor who will potentially prescribe.

Cheryl

[A Friend]

Hello Redrock,

Glad you found this site.  I learned about AP in late 1996, and began using it in January 1997.  It worked wonders soon for me.  Over these years since that time, I've been very involved with many patients, and a number of these have been SD patients.  All I've known have gotten significantly better on AP. 

Dr. F in Calif. is a respected, experienced rheumatologist who has treated patients for many years using AP.  I just went to his site, and copied the following link (after opening the link, just scroll down to find the Scleroderma heading).  In the information about Scleroderma, he reports that of those scleroderma patients he has treated, 2/3 of them have had signficant improvement, and explains why he believes the other 1/3 did not have the same improvement.  http://www.thearthritiscenter.com/arthritis_info.htm#Anchor-Scleroderma-23240

Good luck to you,
AF

PS  After posting above, I found this in my Sent file (my filing cabinet) that I thought might also be encouraging:

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http://www.maureenshealing.com/A_Place_To_Go.html

 

[Kim]

Hi redrock, and welcome to the Roadback forum.

I am an SD/Lymie that antibiotics have “mysteriously worked for”, so NO ONE can tell me they don't work! :headbang:

Fortunately, there are still some doctors out there that have not caved in to the pressures of Big Pharma and the insurance companies who want to drive our health care.  It is up to us to educate ourselves on what options are available and then insist on which course is right for us.  If it means traveling to the right doctor, then you do what you gotta do. 😉

When I first got sick with SD (didn't know I had Lyme at that time) I joined several SD boards and this one.  I studied what people were doing that were getting better and also what people were doing that were getting worse.  Very quickly it became clear to me that those using antibiotics were getting better, much better, making it an easy choice.  I've also learned that it's not as simple as popping Minocin, it's taken a lot of work addressing everything that allowed my immune system to have crashed in such a big way………food allergies/sensitivities, thyroid, hormones, parasites, etc.  Your body just can't fight a massive infection(s) when the rest of the system is not working properly.

I too am outraged that people are “silenced” on other boards inquiring about the Antibiotic Protocol.  From all my research, this is by far the most benign treatment with the best results, a no brainer, and one I've never regretted.

Let us know what we can do to help.

Take care…..kim

[richie]

Hi sclero.org is a part of the International scleroderma network –a few interesting observations —firstly they accept ads from drug companies —secondly their US medical advisor is Dr James Seibold  who had a spectacular failure with a drug called relaxin about 12 years ago –he ran the study out of Howard Wood Johnson in Jersey –he is virulent in his opposition to minocin for the treatment of scleroderma –I was on top of this cause at the time I had a choice of seeing him for the relaxin study or seeing Dr T up at Harvard for the minocycline study —thank goodness I made a great decision —

richie

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