Waynes road back

[Wayne]

Hi to everyone. I live in Australia working as a Paramedic when I noticed my hands becomming itchy and numb along with various joint pain and stiffness beginning early this year. That was the beginning of symptoms which have now manifested and I have been diagnosed with SD.

We have found a Rheumatologist who initially treated me in the normal medically accepted way, however I had some sort of reaction to that treatment and ended up in hospital and taken off Methotrexate and Prednisolone. Once home, my symptoms were progressing, with what seemed to be little or no hope for the future.

Thanks to my wife Helen who found this site after much research which has lead us to take the AP to my rheumatologist who has agreed to start the treatment we suggested, although he is not familiar with the protocol.  We are now left to our own devices at this stage to regulate the appropriate dose of Minomycin.

For the past 5 weeks I have taken 100mg MWF and seem to be tolerating it well (small herx after over exersion). We have now decided to up the dose to 100mg daily. 

This is our first post and would like to thank the Road Back Foundation for this site.  We are looking forward very positively now to a bright future and the complete reversal of current symptoms.

Regards 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.

[JBJBJB]

Wayne,

Glad you found this site. Behind a great man there is a super woman. Thanks to your wife Helen to bring you to this site. I am sure there are several people from Perth Australia will connect with you. They are also recovering with AP treatment.  JB

[Cheryl F]

Wayne,

Welcome! With the information you can get from other SD patients on this board, and knowledge about what their doctors are doing, I am confident that you will be able to work with your cooperative and open minded MD.

Take a look at the recent thread started by Randy asking the SDers to rally with their stories. Use the Personal Messages (PM) function to write them privately if you like. We are a very open group when it comes to discussing the ins and outs of illness, treatment, and RECOVERY! As Kim (a recovered SDer) says, “Whatever it takes!” There are so many recovered and recovering SDers that participate on the RBFBB you will certainly have the support you need to beat SD.

Again, welcome!

Cheryl

[lynnie_sydney]

Hello Wayne and welcome to Road Back! Your wife Helen and I have already been in contact, as you no doubt know. I am very pleased to see you at the Forum, there are alot of wonderful people here who will be delighted to share with you their wealth of experience and wisdom in using AP to treat SD. 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)

[justsaynoemore]

Wayne, its posts like this that keep me going, and remind me that I know I am on the right road for me.

I recently travelled to Mayo Clinic Jacksonville, Florida for a rheumatology consult, who confirmed my RA diagnosis (3.5 years later and its still a fight even with an RF of 444, CPP of 250, gone sero-positive twice, and confirmed synovitis in both wrists, what is the problem here, I digress). 

He said he prescribes minocin for RA, and to keep on it, and he was amazed at how well I was doing as for my age and initial dx numbers, I am in the 97% of having a poor prognosis.

Well, I seem to be in the 3%, and I owe it all to this little Pip of a poster who tracked me down on the site that cannot be named as I was posting in the lupus area about mycoplasmas (wrong dx) and she got me in here.  I was lucky to have an FP open minded enough to go to the site, look up the protocols, and here I am.  Blessed.

Happy Holidays to you and I know we all look forward to hearing about your continued improvement.  Welcome aboard.  Cathy

[Maz]

Wayne, it's great to meet you and your wife must be one amazing lady to have done all this research and get you sorted out with AP so quickly….and fantastic that your rheumy is willing to help to boot! 😀 

Lynnie is a great RBF resource for all you Aussies, so she'll guide you right if you need an AP doc to help you tweak things along the way.

So sorry you have to deal with this disease, but AP works and it works well for scleroderma, so I hope it won't be long till you're well on your road back, Wayne. Great folk here and you'll find lots of mates in no time.

Peace, Maz

[Randy]

Hi Wayne,

Welcome to your road back to health.  It is not an easy journey for us SD folks and it is one that you'll need a lot of patience and determination. Did I say you'll need to have a very good and positive attitude?  Hey, that should be easy for anyone lucky enough to live in Perth!  Wow, there is so much awesome squash there!  I already have one new buddy (or is that “mate”?) from Shepparton and a U.S. vs Australia match set up.  You may want to PM Brendan Gosstray (BrendanG. ).

Also, 1st recommendation: get up to 100mg minocin twice daily as soon as possible, and start taking lots of probiotics.

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"

[Cheryl F]

So Randy, you've got plans to be back on the internations squash circuit?  You must be feeling well!

Cheryl

[Randy]

A number of years back I had an invitation to play on a U.S. team on a whirl-wind tour of Australia.  I'm sorry that I didn't go.  They played about 2 matches a day and did a lot of drinking. I'm not sure I can be very competitive now, but I do know I can't do much drinking!  Yes, to answer the question, I am doing much better, and I do look forward to going down under for a few matches.  Now I have some good buddies to play.  They'll be in competitive shape by then too!

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"

[Wayne]

Thanks Randy for your encouragement and to everyone else as well. It was very exiting to see that I had some responces to my first post and to read the wonderful life changing stories that have been the case for so many.

 We will be taking your advice on upping the dose of Minomycin – from today 50mg x2 each day for a couple of weeks and then up to 100mg x2 each day. Both Helen and I thought that it needed to increase as I have been on  Minomycin for 4 weeks now at a fairly low dose.

It seems like you are a good squash player and are now well enough to enjoy a bit of a hit. 🙂 Awesome. Helen and I are having a weeks holiday down our southwest next week before my big effort to bet back into an ambulance at work on the 27th Dec, all being well. I enjoy riding a quad ATV, and although having a bit of trouble with the left hand, I cant wait to get on it next week.

All the best 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.

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