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Hi everyone, and hello to all the new people, greetings from Western Australia,
Well it has been quite some time since I posted a new topic, and I've been busy with all this SD stuff. It is almost a full time job fighting this mongrel disease.
The good news is that I am getting better. It does seem up and down at times, but overall I think I'm going great thanks to AP and roadback.
I'm using the meds described in my profile, along with eating very healthy natural food (gluten free, preservative free, dairy free, sulphate free, low sugar) and with the sauna, it is all having a significant effect on my SD (I have systemic sclerosis).
The swelling in my legs and hands has all but gone, hair is growing back on the back of my hands and the veins are becoming noticeable again, fatigue has improved, my face is not as sore and has stopped thickening, the SD activity in my oesophagus has also stopped, there is also no interval change in lung disease in the last 6 months. It is all just great news really. AP works and is working for me, so please be encouraged to fight on in your situation.
It is a long battle with SD and I'm still as stiff as a board with connective tissue scaring making some movement difficult. I must be growing, because my feet seem to be further away. My raynauds is horrible and the truth is that I am half the man I was twelve months ago. Hey, it is mostly stuff I can live with, but I think a lot of the symptoms will get better in time as I'm only just getting started with these pesky micoplasmic bugs. I put my wedding ring on the other day for the first time in 12 months, how awesome is that.
Anyway great talking to you all and I will continue to keep in touch. So much to learn and still a lot of work to be done in the hope of getting and staying well.
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.Wow. That is absolutely fantastic. It honestly makes me feel really, really great reading this. It's the kind of story that gives newcomers hope. Thank you for posting this. It certainly gave me the lift I was looking for today. 😎
CONGRATULATIONS!
Dan
Wayne,
I know it's been a hard road for you but, I'm THRILLED to hear about your progress with AP. Way to go!!:roll-laugh: I wish you continued success in your path to wellness. It does take time but, you'll get there. Whenever I get down about things, I think back to a year ago, when I was as stiff as a board, and bending over was impossible. I don't even think about bending over anymore–I can touch my toes, my flexibility and range of motion is about 95% now, and I forget often that I'm sick. What a wonderful feeling to have! Thanks for sharing your story, and for offering encouragement to those struggling right now.
Maria
Wayne,
It is a long, hard recovery from these diseases but you are really making great progress. I don't think many here get IM (intramuscular injection) Clindamycin and I'm wondering if that would be a good option for many who are having difficulty getting IV Clindaymycin.
Thanks for posting and giving us all a lift today!
Such wonderful news, Wayne. I'm just thrilled you've stopped the progression and things are headed in the right direction.
You are correct, it's an exhausting fight, but one that gets easier when you start seeing proof that it's working.
Thank you for taking the time to post an update. As you know, people just starting out can't hear enough stories like yours. 😉
Looking forward to your next update.
Take care…..kim
Wayne,
Eight months seem to be a long time ago when you started this support group. I am so thrilled to hear your great improvements in such a short time. It's inspirational to all of us. I am also glad to hear your lungs are doing well.
Keep up with your good work!
JB
Wayne,
Thanks for stopping by to post such wonderful news. I have been on AP 4 months now and am so encouraged by your results. I am happy for you and happy to know AP works.
Sharon 😉
Wonderful news Wayne! Thank you so much for such an uplifting update, thrilled you are doing so well after such a relatively short amount of time. 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)Great to hear from all you guys,
You really are terrific and have been such an encouragement to me – we are all in this together, either fighting to get well or stay well. Parisa it is not set up well over here for IV Clindamycin, so we looked for another option being IM, although my gracious Rheumy does allow me to go into hospital for IV and I have done that twice now at 4 monthly intervals. Next time, now that I know I'm OK with Clindy IV, I'll get a mate from work to score all the gear, cannulate me at home and just do the whole thing from home. The IM injections of Clindy have worked really well and is a very good option to either the IV and oral pathway. We are doing IM once a week, 300mg in the bum and my wife Helen gives it to me. It can hurt a bit, so it needs to be given really slow and then it is much more gentle on the muscle your injecting into. At this stage we basically seem to have settled on Clindy IM 300mg weekly and a course of Clindy IV every 3 to 4 months.
I meant to mention that I was really pleased with my first lot of appointments with my respiratory specialist the other week. He is a top bloke and head of the lung transplant unit over here in W.A., he is in agreeance with my medications and he can see the value in taking the AB's that I'm using. It was all very positive which is good, as sometimes I cringe when Dr's make a comment on my medication list and therefore AP. This is significant to have a guy like him sanction my continued use of antibiotics, because now my Rheumy has a colleague in the medical profession and I feel like he is not sticking his neck out for me now. Maybe they, and others will in time have trouble denying the effectiveness of AP in the fight against autoimmune diseases and start to use them as a front line treatment.
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.[user=1894]Wayne[/user] wrote:
I meant to mention that I was really pleased with my first lot of appointments with my respiratory specialist the other week. He is a top bloke and head of the lung transplant unit over here in W.A., he is in agreeance with my medications and he can see the value in taking the AB's that I'm using. It was all very positive which is good, as sometimes I cringe when Dr's make a comment on my medication list and therefore AP. This is significant to have a guy like him sanction my continued use of antibiotics, because now my Rheumy has a colleague in the medical profession and I feel like he is not sticking his neck out for me now. Maybe they, and others will in time have trouble denying the effectiveness of AP in the fight against autoimmune diseases and start to use them as a front line treatment.
Wayne, I'm late chiming in here, but just wanted to add how thrilling it is to hear that you have now stopped your sclero's progression! WhooHoo! It's all going to be improvements from here on out now.
And, how fantastic to hear your respiratory specialist is on board with you in all this – I absolutely know what this means in terms of justification for your treatment choice and not to have to battle “the system” when so ill. You may be right there – you may be a real troubador for others in your predicament in your neck of the woods and, hopefully, your ally doctors will be open to treating others after seeing your undeniable improvements. Just think – your courage may save other lives down the road!
The thing about scleroderma is that there is no remission…so the argument for “spontaneous remission” just doesn't hold water! They either have to admit the treatment worked or that they misdiagnosed you in the first place. :roll-laugh: I had a doctor tell me the other day that my RA “might have got better anyway”….the look on her face when I told her that I didn't think that could be the case, because each time I stopped my abx for a break my lab numbers worsened was a sight to see!! All she could say after that was…well, be careful of c difficile. Four years on abx and I haven't had a single bout of diarrhea yet (touch wood). Then, she quietly admitted to me that a child with autism came to her recently and, when given abx for an unrelated ailment, shocked the heck out of her when all his autistic symptoms disappeared….so must give her credit…she did then shrug her shoulders and told me, “We doctors don't know everything.”
Way to go, Wayne….it takes a lot of courage to swim upstream and so glad you did, even if you do have to endure painful bum shots (hey, I know how that feels, too)….and who would ever think that a hairy bum was a beautiful thing???…but we all appreciate that kind of thing around here…for all the proper reasons, of course! :roll-laugh:
Peace, Maz
Wonderful news, Wayne! I, too, had systemic sclerosis and attribute AP and RBF with giving me my life back. Brighter days ahead…
Wayne,
Great news! And not surprising. Keep it up!
Yes, congrats on the rebirth of your hair. As Dr. F. told me when I first reported my hair growing back, “That is unequivocal proof that the AP is working”. Doesn't that make you feel great! Yeah, I feel sorry for the folks that can't gauge their progress with their hair regrowth. Wherever I have had hair regrowth the SD has left.
I'm very proud of you, and know that it will continue to get better and better.
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"Isn't the “hair” thing bizarre? 😯 My arms and hands were bald as a cueball and the texture changed and became very thin and slick. My arm hair has returned although it is baby fine and very light so you can hardly see it, a good thing for a girl ;), and the texture is more normal. And just like Randy's pictures, there is no hair whatsoever on the lower half of my fingers (even with a magnifying glass in bright sunlight). So strange.
Take care…..kim
Hi Guys,
It does seem as if the hair thing does support the moving on of SD. It's quite tangible evidence to take hold of.
Randy, the skin on the back of my hand is not quite as loose as in your photo, but a thousand percent better than in Feb this year when my hands were huge and puffy. What might seem a bit weird, but I like to look at the healthy hair on my hands and fingers because it is such visible proof that I'm getting better. I even like to see the veins coming back on my arms and hands.
I always have had really thick hair on my head, but that too thinned out when SD was making my forehead tender to touch. Now my forehead tenderness is almost back to normal, I have noticed the hair there is coming back as well. Yes it is a good indicator.
Cheers and keep well – 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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