SD support group in Perth

[liveinhope]

Hi,

Been a while since I’ve been on here. I am going simply terrific. Thanks to AP! My scleroderma has been stopped in its tracks and I am now stronger and more flexible than ever. It has been one year exactly since I first popped those orange minocycline tablets in my mouth with a little prayer. Our prayers have been answered. I was a real mess last November when I stopped working to try and get well. Now I am on a return to work plan where I gradually build up my hours per week over the next year to see if full time work is possible again. My work is very supportive.

A few days ago I jogged for the first time in about 2 years with something that actually resembled a jog – not a lumber like a 90 year old. I am still not 100% but I feel like I am on a train heading away from SD and it is gradually fading into the distance somewhat. It is no longer dominating my life, rather I am in control of what I can do. I have choices to make now. Before, I didn’t know if I was going to live. I was just dealing with day to day coping with the pain and trying to do my job as a classroom teacher of 31 kids. Then I found out about AP and suddenly had a hope that I could get better – not just live with it as I was told by all the docs and specialists.

Tomorrow I meet with an SD support group in Perth for the first time. I hope to support people with this disease (and get support from them). They don’t know my story yet but I am looking forward to telling them and see what their reaction is. I pray they ask to find out more about AP and that I would have the privilege of sharing roadback.org with them. Unfortunately, I tried to offer it to several people now with RA or lupus that I happened to know and they aren’t interested. All I know is I was sick and now I’m not. The doctors can’t explain why! My respiratory specialist said he has only ever known two people to have improved from SD – me and my friend who put me onto AP. He said everyone else just has a gradual decline, sometimes fast and sometimes stable for a while before worsening in stages…but always a decline, never an improvement. I think he is watching me with interest.

I hope and pray for all reading this that you are improving too with your treatment for whatever nasty disease you have.

Blessings

Ben

Diffuse SD diagnosed Sept 09
Minocycline 100mg 3 time a week
Klacid
Funglin
Eryc
Pariet
Felodur
Protocel
Various supplements
Gluten and dairy free diet with limited salycilates
Gym and physiotherapy program
**I think I have the balance right with this so I’m not messing with it. I was thinking of doing my third clindy IV but now think it is not necessary.

[Patricia.Ann]

Hi Ben 🙂

What a truly uplifting story. I am soooo happy to hear how well you are and that gives great hope to someone like me just starting out on their AP journey.

Thank you for sharing that with us – and I really hope some of those at the SD support group will listen to your wise words and be helped by them.

Take care

Patricia x

[Trudi]

Our prayers have been answered.

Hi Ben–
What a wonderful, uplifting post. Continued healing to you–
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?

[dianne-sunshinecoast]

hi ben, what a great healing story, i am so happy for you, all the best for your future 😀 . kind regards ..di.

[lynnie_sydney]

Hi Ben – great to hear from you and with such good news. Yay for you! 😀 😀 😀

With such good news to sustain you on your way, please dont be bewildered or downhearted about possible lack of interest in the SD Support Group (you may want to takje a look at GayG’s recent posts in that regard). I have found (as many have here) that many people just dont want to hear about AP. A few responses I’ve heard: “if it were any good, it would be mainstream”, “it’s a hoax” “you must have had something else” “you’ve just been lucky”………you may hear some of those and possibly a whole lot more. Over the years, I’ve learned to respond to people who find it hard to believe that I’ve got a serious rheumatic condition and yet seem so well that I’m on a medical protocol, just rather an unusual one. I only ever go any further if people express interest to hear more. This a road to wellness for “upstream swimmers” – it takes time, self-education and a whole shifting of paradigms to want to pursue it and many people just arent built that way. We all have to find our own path. So pleased for you that the path you’ve chosen is proving to be so life affirming.

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)

[Rosemary Perth Aust.]

Hi Ben
So very pleased you are doing so well. Must tell my friend Val who lives in Merredin and came all the way down to Perth nine years ago to one of our Road back meetings and has been in remission since she went on the mino also. She cannot believe it either. she may like to know of your meetings not that she has a lot of time when she does come down but will tell her. She can back you up as well. what a wonderful feeling to be given a reprieve. All the best to you for searching and finding answers. It takes guts to give things a go but it worked, and its your life you are dealing with. Kind regards
Rosemary in Sorrento.

[Maz]

Ben, so happy to hear your wonderful news!!! 😀 Can’t wait to see your testimonial on proud display on the main site!!!! Way to go getting yourself back on track to good health, especially as it can be such a challenge to find treatment in your neck of the woods.

If this helps (re: your SD support group), there is a printable tri-fold brochure, located the main site, in case anyone asks what you did to reverse your disease. 🙂 Maybe it will help just to hand these to folk, so you don’t find yourself having to defend or explain repeatedly what treatment path you took, if it should come up? You can just hand someone a brochure and say, “This is the treatment path I took to reverse my SD and you’ll find what you need to get started researching this for yourself in this brochure.” 😉

https://www.roadback.org/index.cfm/fuseaction/aboutRBF.sub/subgroup_id/31.html

Thanks so much for checking in with us…always great to see you here.

[liveinhope]

Thanks to all your replies. It is very encouraging. I’m hoping and praying for the ladies I met that they may be restored as I have been to health.

Blessings

Ben

[nspiker]

Hi Ben,

I read your post the other day, and copied it and sent it to my mother-in-law. She was diagnosed about the same time as you with SD, but the doctors have scared her away from AP, saying that antibiotics can hurt her more than immune suppressing drugs.

Yours is a truly inspirational story. I know you will touch many with your words….

I pray they ask to find out more about AP and that I would have the privilege of sharing roadback.org with them. Unfortunately, I tried to offer it to several people now with RA or lupus that I happened to know and they aren’t interested. All I know is I was sick and now I’m not. The doctors can’t explain why! My respiratory specialist said he has only ever known two people to have improved from SD – me and my friend who put me onto AP. He said everyone else just has a gradual decline, sometimes fast and sometimes stable for a while before worsening in stages…but always a decline, never an improvement. I think he is watching me with interest.

nancy

[Perth-WA]

Hi just wanting to know if you would know of any doctors who practice AD protocol in Western Australia or any other states in Australia?

[lynnie_sydney]

Hi Perth-WA

As I think I’ve mentioned to you Ben (liveinhope) doesn’t visit this forum very often these days so he may not check in to look through posts. You would be better Private Messaging him because he’d be alerted by email re this. To send a PM go to top left where it will say ‘0 new messages’ and click on this. Recipient is liveinhope – type this in and submit. Then compose a message and submit. Please note that, in this system, PM’s stay in sender’s outbox until they are picked up by the recipient (doesn’t mean they haven’t been sent).

Some time back, Ben was seeing an AP Doctor in Victoria and being monitored by a rheumatologist in W.A.

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)

[A Friend]

Hello Ben,

What a great way to begin my day… reading your wonderful post about how well you are now doing about a year after you began! Especially where SD is concerned. There was a time when this diagnosis was one of the most challenging and feared.

Also, can’t help but remember quite a number of years ago how even one or two with scleroderma began sharing that things with them might be improving. Thank heavens for Road Back’s presence, first in that little office in the Eastern USA who supported Dr. Brown’s work, and volunteers sent us information packets via US mail.

We’ve come a long way, as an organization, as a support group and encouragers, and especially as patients who now get more help and encouragement than we possibly could have imagined back then.

A toast to Roadback Foundation, our great Volunteers, and all you wonderful people who are encouragers — and especially to Dr. Brown & BEN’S GREAT NEWS!!!

AF

[m.]

Ben,

Thank you for taking the time to visit RBF and share your update.

Wishing you continued progress and many years of good health!

Cheers!

m.

[lynnie_sydney]

Hi all
Ben’s post was from 2011 – it was bumped up by someone looking for AP doc in Perth.

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)

[m.]

@lynnie_sydney wrote:

Hi all
Ben’s post was from 2011 – it was bumped up by someone looking for AP doc in Perth.

Thank you Lynnie! (doh!)

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