Steady Progress on AP

[Wayne]

Greetings to all and have a great Christmas.

It has been a long time since I have posted, although I touch base with RB from time to time. I guess my meds and my general treatment are quite well sorted for now and need only to be tweeked every now and then at this stage. My skin has softened systemically, and my lung function tests have improved to the suprise of my respiratory specialist. I have even stoped loosing weight now and are putting back on some of the waisted muscle. Generally speaking I’m doing great thanks to you guys and RB.

I have met a guy over here in Western Australia who has SD. We now are good friends and he has started treatment on AP, with his first round of Clindy. I am so excited at the prospect of seeing this terrific young fella get his life back. Go AP 😀 . I started to get better from my disease right when it was just really getting cranked up in its early aggressive stages. Quite amazing really. Now as my friend starts to get better, Lord willing, our Dr’s will be watching closely, as I know they are becoming interested in our AP treatment. Here’s hoping other people with SD in this state of Western Australia will be helped with AP in the future!

I will drop in from time to time as it is so nice to hear how you are all doing.

Cheers Wayne

PS. Where’s the spell check, as my spelling sucks. Oh well.

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.

[Kim]

Hi Wayne,

😀 😀 😀 😀 😀 This is such a timely post and I will make sure Corey sees it. He hasn’t turned the corner yet and this should encourage him.

Couldn’t be happier for you! Thanks for posting.

Take care…..kim

[mschmidt]

Wayne,

Welcome back! It’s so great to hear how good you are feeling. Congratulations on your lung function tests–that’s so wonderful! And the muscle wasting stuff–that takes a little time to reverse but, I’m glad you are on your way there. You’re already an inspiration to people here so, I’m not surprised that you’ve met someone with SD that you are helping out back home.

Enjoy the holidays, and please do check back in and let us know how you’re doing 😀

Maria

[lynnie_sydney]

Wayne – so good to hear from you and with such terrific news 😀 😀 😀 . I had heard that you were doing a little ‘mentoring’ 😉 😉 and was so glad to hear that. I wish you and Helen a very Happy Christmas and a 2011 that brings you continued great improvements and wellbeing. Lynnie
P.S. Incidentally, are you still consulting with Dr D or going your own way on this?

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)

[Wayne]

Hi Lynnie, Maria and Kim, it’s nice to hear from you and thankyou for the encouragement that you guys have been to me over the past year or so. I pray that you all keep good health and have an awesome Christmas.

Lynnie – I do still see Dr D and was over there just recently. The last visit resulted in a slight adjustment in my meds, but they were pretty happy over all. I still have SD stuff to deal with as you would know, but it’s well and truely going in the right direction.I cant help but be thankful that I started AP when I did, and when I think back, I’m amazed just how the AP treatment started to work on healing my SD right when it was like a raging fire in me in the early and very aggressive stage. The Dr’s here are putting it down the the end of a phase as my skin softens, but we all know that SD isn’t going to cycle out just when it’s getting started. I think that they are quietly watching my progress with interest.

❓ How often do you see them now Lynnie? I guess I wont need to see them quite so regularly now, although I wouldn’t mind shooting over to Vic with my mate with SD to get him started on the complete treatment (gut healing, etc) as I feel it’s important, if he would like to go.

I will keep in touch – Cheers 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.

[lynnie_sydney]

Wayne – I was down there in June and will plan on another trip in late Feb or March 2011. Your mate was in touch with me re docs and I think he has a potential visit in the back of his mind (if he cant discover anyone your side of the continent 😉 So, did you win the argument about continuing with the Minocin or has your body’s response changed there? I see you are still taking it. 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)

[Wayne]

Hi Lynnie,

The Minomycin – Well I didn’t actually tell Dr D that I still take it. Bit chicken I guess. So I just go on taking 200mg a day, because Helen and I feel that it is still very important in the fight agains the underlying infection. I can only learn from others mostly on this site, and guys like Richie have been taking it for many years along with probiotics, with no problems. There will come a time when perhaps a lower dose may be appropriate, but not at this stage.

Maybe I’ll cough up next time 😆 , but I don’t think so.

Take Care 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.

[Randy]

Wayne,

Thanks for the update and we are all so happy that you are doing so well and beating SD. Keep it up!

Randy

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"

[liveinhope]

Hi Wayne and all those who have replied.

I am the ‘mate’ Wayne has rescued over here in the west. And he has been a true mate to me! Thanks Wayne for not only offering AP as a treatment but taking upon yourself to encourage, visit in hospital and mentor me in this new thing. What a blessing you and Helen have been to me and my family.

Maybe I am an impatient person but I can’t wait to see some changes after starting IV clindamycin for scleroderma about three weeks ago. I have been on oral minocycline for about seven weeks too. I do feel better in the last week though and I think this is due to the clindy and the rest since leaving work on sick leave three weeks ago. My leg muscles were so sore all the time and now they are just weak! Hardly any pain. But I just can’t wait for more changes!!

I will get around to putting up a post of my story soon for those who may be interested.

May you all be blessed this Christmas.

Ben

[Kim]

Hi Ben,

How nice to meet you! 😀 Welcome to the Roadback board.

You are very lucky to have Wayne lead the way for you, sure makes things a little less frightening. We all have our own custom mix of infections so don’t be discouraged if you have to alter your treatment a bit from Wayne’s. My doc always says, “if it’s working, keep doing it……..if it’s not, change something.” You walk a little bit of a fine line in knowing how long to trial a treatment before you decide whether it’s working or not, but you get better at this over time. 😉

AP has literally saved my life as I had a fast-progressing case of SD and later learned Lyme Disease induced it. It’s taken many “corrections”, but things are now under control. You can read what all I’ve done to get better in the link in my signature line. It’s taken more than just antibiotics, it’s taken an all out effort to strengthen my immune system.

Remember to take your probiotics and protect your gut! 😉

Take care and we wish you all the best.

kim

[Maz]

Ben, so nice to meet you and so happy to hear that your star collided with Wayne’s and you guys found one another! There’s never any mistakes in this life. 🙂

I was just thinking about research I’d come across linking infectious causes to SD and thought you might be interested to read old eBulletins where these were included:

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

https://www.roadback.org/emailblasts/ebulletin_spring10.html (see also Steve Stephens Remission Story in this edition)

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html (also see Dr. T. article – includes info on SD)

And a newer one that will be going in the next eBulletin:

http://www.ncbi.nlm.nih.gov/pubmed/20863912

A merry Christmas to you, Ben, and may the new year bring lots of health and happiness to you as you start out on your road back.

[Author]

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