AP for Scleroderma in Texas?? Looking for info/advice

[_faith_]

I heard from someone on Inspire.com/Scleroderma Foundation that there is a document about AP in Texas that everyone raves about, and he said that I should post a topic on this website to see if anyone can lead me to it. My dad is looking for a new possible treatment… He sees Dr. Mayes, who seems to have exhausted all treatment possibilities, as she is not offering any new solutions or helpful remedies. It’s very frustrating, so we are doing some research to see what else is out there. Your input would be appreciated.

[Jan Lucinda1]

There is information on requesting a list of AP doctors in the Announcements section.

[Melinda]

Hi Faith & welcome! Boy do I ever sympathize with your family’s frustration. I was seeing a rheumatologist/immunologist at a Ivy League medical school for the first 2 1/2 years after my sclero started & although he was very kind, he told me flat out that nothing that they’d ever tried had worked for my condition. Basically he was just monitoring my decline, but he had no treatments to offer to slow or stop the progression of my sclero. Definitely very, very frustrating! Fortunately for me though ( 😉 ), I developed a nasty oral infection that required 40 days of oral clindamyacin and low & behold, my sclero symptoms improved dramatically. Being a bit of a skeptic though I’m afraid, it took me months of researching AP (unfortunately while my sclero went wild suddenly affecting my digestive & reproductive systems) before I really “got” that something so simple really could be so effective. Thankfully, with all the support of the Roadback volunteers & the help of a wonderful AP doctor, I have been on name brand Minocin since the end of March ’10 and now I’m on oral clindamyacin, too. The difference over the last (almost) 9 months is truly night & day. My digestion is now 70+% normal (and the reflux is even improving now!). My gyn issues have totally resolved. The connective tissue & joint pain has improved to the point that I no longer take NSAID’s for pain. It’s now within my ability to tolerate without pain meds. I’m still dealing with some issues, thus the addition of the clindy to my AP mix, but our whole family has been very relieved and thankful this holiday season for the improvement. Honestly, I feel like a walking, talking miracle now. 😀 😉 Despite the fact that I’ve always been very quiet & private about my condition, since my improvement, I’ve now passed on my AP doctor’s business card to several people that I’ve met that have a family member or a friend with a rheumatic disorder. I hate to think of where I’d be today now, a year after my sclero hit the accelerator, without AP.

I’m sure that more people will pop in with their suggestions and support as soon as everyone logs back on after the holiday. I just wanted to encourage you to continue your search for answers, because for me, it’s been literally a Godsend. By the way, I know from my own experience that when you are feeling that lousy and scared, to have the support of your family is so important. I am so very thankful for all of the support that I had, so I have to say that your father is a very lucky & blessed man to have your support! Again, welcome!!

[_faith_]

You mentioned that you researched the treatment… did you see anything about whether or not the AP treatment works differently for people who have diffuse scleroderma vs. systemic?? The only people I’ve heard from about the AP all have systemic, so I am just curious if it is applicable to the diffuse as well. Any ideas?

[Lynne G.SD]

Hi Faith;
Good morning little one.I am glad you made it to this site.
Scleroderma is Scleroderma regardless of the names the doctors give it.I know people how have SD Sine Derma,i.e. internal problems but no outward manifestations.Most of them in time have the progression to the skin.Linear/Morphes which starts just as wee patches eventually spreads and in years affects the internal organs.There really no fix to the problem but AP DEFINATELY makes a big difference to a very high percentage.
I live in Canada so I can’t help you with a doctor but I have heard of a very good one in Texas.Just wait a wee bit until everyone recovers from Christmas and you will get answers.
Thank you for being a loving daughter,Lynne

[MINOCINMAN]

Hi Failh:

I am in the process of securing a video of a presentation done by Dr. David Collier, expert on SD in Denver, CO that will refute what your father was told about no treatment for Diffuse SD. It will be available in Jan 2010. i am hoping to get permission to post it on the internet, or hopefully the website of the scleroderma foundation.

I have same condition and appear to be getting better and better after on AP for 4 months.
When did he 1st have symptoms and when was he first diagnosed? What treatment has he tried so far?

[_faith_]

Minocinman- I hope you are able to post the video you mentioned. I forwarded what you said on to my father and he’s interested as well. If you have any useful articles or other info, feel free to pass it along to me via email at ac1293@txstate.edu.
He was diagnosed almost 2 years ago at the age of 49… he went from running 7 miles a day and constantly doing manual labor, which he enjoyed, to laying in a hospital bed and no one could figure out what was wrong with him. He had Pleurisy, and then after the doctors considered Lupus or RA, they came to the conclusion of diffuse Scleroderma.
From what I know he has been on Prednisone, Methotrexate, Arava, Gaviscon, Prilosec, Atenolol, some other med for high blood pressure, and he has tried every hand cream, oil, and gel that he could find. I recently read about DMSO and ordered some online, so he just started using that 2 days ago on his hands. Plus, this past week his doctor ordered a CAT Scan of his lungs, an ECHO, a second PFT, and he will wear a heart monitor for the first part of January.

[MINOCINMAN]

@MINOCINMAN wrote:

Hi Failh:

I am in the process of securing a video of a presentation done by Dr. David Collier, expert on SD in Denver, CO that will refute what your father was told about no treatment for Diffuse SD. It will be available in Jan 2010. i am hoping to get permission to post it on the internet, or hopefully the website of the scleroderma foundation.

I have same condition and appear to be getting better and better after on AP for 4 months.
When did he 1st have symptoms and when was he first diagnosed? What treatment has he tried so far?

Failth:
I need to clarify my last posting. I did not mean to say that Dr Collier, nor myself asserts that there is a treatment plan that will “Cure” SD, but rather will treat the various symptoms. I am not aware of any treatment that cures the condition, but conducted extensive research to support that AP can be effective at getting the condition into remission. I know of numerous people on this forum that are doing very well, including many that have of course posted their testimonies as to the efficacy of AP therapy.

Minocinman

[_faith_]

I completely understand what you mean. I am aware there is no cure; just treatments for the symptoms. I have also been reading people’s testimonials of AP, but I’m still looking for more info. Thanks for your input! 🙂

[dcmilliman]

I am a satisfied AP user and have been for 2 1/2 yrs. Before when I was investigating AP I ran across something called Marshall Protocal ( which uses a Dr. Marshall ( not a real doctor of medicine ) theory that if you regulate your vitamin D levels you can control SD. I don’t know first hand if this works but I stopped taking a lot of the supplements I was using and was able to wean off prednisone using some of his theories . Since I did not have SD I was not needing his advice so I cannot say for sure this works but feel like it is worth investigating . Just a thought since I know SD is a killer and have not heard anyone with any real solutions. GOOD LUCK & Happy Holidays.
Mailman

[Maz]

@_faith_ wrote:

I heard from someone on Inspire.com/Scleroderma Foundation that there is a document about AP in Texas that everyone raves about, and he said that I should post a topic on this website to see if anyone can lead me to it. My dad is looking for a new possible treatment… He sees Dr. Mayes, who seems to have exhausted all treatment possibilities, as she is not offering any new solutions or helpful remedies. It’s very frustrating, so we are doing some research to see what else is out there. Your input would be appreciated.

Hi Faith and welcome to the RBF forum! 🙂 It’s been a bit quiet around here, as it’s that time of year, but hopefully you’ll get a few more SDers chiming in to offer to share their personal experiences of AP for you.

Can you remember any details of the “document about AP in Texas?” E.g. author, more detail on what it was about, etc? It might ring bells for someone and they can dig it out for you.

In the meantime, thought you might enjoy reading some Remission Corner stories of some of the SDers who frequent here on occasion. Sometimes, it’s just nice to see photos of real people who have managed to reverse their rheumatic diseases and your Dad might enjoy reading these, too, so it’s worth subscribing to the RBF’s free quarterly eBulletin, if you haven’t already. 😉

Kim Patton’s remission story:

https://www.roadback.org/EmailBlasts/ebulletin_fall09.html

And, here are a few more remission stories for you to read:

Richard (Richie) Stone’s remission update:

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

Jessica Ferguson’s remission update:

https://www.roadback.org/EmailBlasts/ebulletin_summer09.html

Steve Stephens remission corner story:

https://www.roadback.org/emailblasts/ebulletin_spring10.html

If your Dad would like to see an AP doc, let us know, because we can send you a list for TX of AP providers.

Also, if this helps further, the last RBF eBulletin included an article by Dr. T, who ran the Minocycline in Scleroderma Trials, and also some interesting research that discussed evidence to support the role of infections in the immunopathogenesis of SD:

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

And an older eBulletin with a case study tying SD to borreliosis:

https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

[Valsmum]

Hi ,

I live in Texas too and I went a Dr. P in Houston, that prescribed me a clindy IV for my RA.She has an infusion room if you want to get the IV done at her office.
I was able to do the clindy IV at home all week and my family helped change in and out the clindamycin and I just had an IV port left in my arm for a week and a nurse came to my home and showed me how to do it.
I did feel better the following week.
I can private message you the doctor’s info, just click on “1 new message” up above.

Take care, Sheri

[mikana]

My husband was diagnosed in Dec 08 and we were given the same BS that there is nothing that could be done about it except to monitor his downward spiral. I could not accept this so went online and searched….strangely enough I used MySpace and put in the search for scleroderma and came up with some “friends” one of which lead me to the book “Scleroderma” by Scammell and to this website. From here we were given AP doctors names and my husband also spoke with Cheryl on the phone who gave us the name of a gentleman here in the Dallas area that we spoke with (who is basically in remission) and thru him met a wonderful woman Gaye (you can search her posts also) who gave us a great reccomendation of a doctor in Lufkin. Needless to say we met her (the doctor) and Mike has been seeing her for about a year and a half now and is on AP. We are so please with his progress, it is truly a blessing to have found all of the help and the folks on this board are so helpful also.

If you need any more information please feel free to contact me. I realize how hard this journey is.

Lana

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