The Ongoing SD Fight

[Wayne]

G'Day and Greetings from a very hot Western Australia,

It has been a while since I have posted anything on my progress, and a lot has happened in our little war against SD. Thanks so much to everyone for sharing their stories and experience in there own fight, as that has been a vital part of our learning.

About 6 weeks ago I had 600mg IV of Clindy a day for 2 weeks. A fairly hard hit of Clindy, but a good result, apart from running out of veins for cannulation and diarrhoea. My wife and I then traveled east to Melbourne, to see a terrific Naturopath and Dr experienced in AP (hard to come by in Aussie land), in the hope of sorting out a thorough plan of attack. Well that's exactly what happened. What a blessing it was to be treated by these ladies and the fact that we are on the same page in our belief in AP.

Quite a holistic and complete approach has develop, including- prescribed medications, natural supplements, an anti-inflammatory diet and infrared sauna. I'm so content now to settle into this plan of attack and to give SD the big flick. Straight after coming home from the east (4 weeks ago), Helen and I started the anti-inflammatory diet (my wife is doing it with me, just awesome of her). Within one week, my inflammation went down significantly and I have my feet back veins and all. My face is not puffy anymore and my hands look better too. Hands and fingers are still as stiff as, but that's a longer term issue along with all the other scaring. We feel like the handbrake has been pulled on the SD freight train (4 months into AP) and although I have a long way to go yet with it's ups and downs, we have made progress. Yee Ha :roll-laugh::roll-laugh::roll-laugh:

Have many of you done Clingy IM? As part of my new regime, 300mg of Clindy IM is to be popped into my bottom per week. Helen gave me the first jab last Sunday and all was cool until she started squeezing the Clindy in :sick:- OUCH. I didn't feel the needle, but that Clindy. Oh dear – well I suppose it's just a small price to pay.

Nice chatting to you all and all the best with your own journey on AP.

Kind 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.

[Kim]

What an awesome post to read this morning, Wayne.  Congratulations for making all this happen so fast which is crucial when SD is spreading like wildfire.

Improvements in four months was my experience also where you can finally catch your breath (just a little ;)) and feel like you're on the right track.  I did the Clindy IVs, but not the Clindy IM shots so don't know what to tell you about the discomfort.  My husband gives me B-12 shots at home, several a week, and most don't hurt at all, but when you hit a vein it really does.  I'm hoping that's what happened to you and the next one won't be so bad. 😕 Quick stick and slow plunge is what I tell my husband for the shots.  I know the oral Clindy can really tear up your gut so I hope the shots work out.  Another oral combo that worked well for me was Minocin and Zithromycin.  Stick with what's working and if you plateau there are options to tweak the protocol.

You've put together a great team of “ladies” to take care of you! :blush:  You and Randy should meet ~ his IV nurses bring him cake! :roll-laugh:

Thanks for the update, Wayne, you have no idea how encouraging it is for others to hear.  We'll be looking forward to the next one. 😀

Take care…..kim

[Elijuh]

Hey Wayne!
Good to hear you have a partner that can pop you in the butt! Any of my shots at home I do myself in my thigh. I think that works just as nicely but not near as much fun! Soooo glad you are progressing nicely. Keep up the good work!
Blessings!
eli

[mschmidt]

Way to go Wayne!  That's such great news, and I'm so happy that you are seeing results already.  Sounds like you're taking a full body approach to wellness, which is always a good thing.  Also, how wonderful of your wife to support you by doing the same type of diet.  That will help you tremendously as well.

I've heard of the clindy IM's but, since I'm getting the iv's monthly, no interest in switching. (and, my husband doesn't exactly have the “soft” touch when it comes to stuff like that–I'd rather stick myself than have him stick me)

Thanks for sharing your good news, and keep forging ahead!

Maria

[Parisa]

Hi Wayne,

I'm so glad to hear that you are doing so well.  You've decided to grab the bull by the horns and I can tell you're winning.  I gave my husband IM bicillin shots for about six  months.  Not fun for him or me.  We were advised to give it slowly so it wouldn't hurt as much but he just wanted me to get it over with.  Anyway, your wife could try injecting a tiny bit, wait a few seconds and inject some more.  Maybe that wil  help some.

[Kim]

Wayne,

Another thought.  You could ask your doctor for some topical Lidocaine cream to numb the injection site first.  It's a prescription here, but not sure if it is in Australia.

Take care…..kim

[Wayne]

Thanks heaps for the ideas and concern, but I'm probably just being a big sook. I need to suck it up a bit and soldier on.

They have a gluten free sort of health show at the Perth convention centre tomorrow, which should prove to be very interesting. We will get some new ideas on what wholesome chemical free food is available for us to gobble down. Its all a part of taking the load off my immune system, which I feel is very important.

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.

[lynnie_sydney]

Wayne – so great to hear your update and of your positive response to your visit east and the DR KD/LW team. I've been on the diet for 2 years now (for me no gluten, dairy, sulphites and low salicylates, sulphur) and find it absolutely fine- has become a way of life – and I feel a big part of my healing road. It's fantastic that your wife has decided to join you in this aspect. Lynnie P.S. Did you end up retiring or taking extended leave from that job you love?  

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 Linnie

Great to hear from you and hope that you are well. With your diet, do you include maize/corn products? I would think that I would end up with a long term diet very much like yours, as it certainly is a very big part of returning back to good health. The only thing I currently miss is flavour in quite plain cooking, but that will change in time and as we learn to cook for our new style of eating. I wonder if many others have included diet as part of there treatment, as it seems so important to me.

The Ambulance job is just to demanding when feeling second rate, so I have basically had to say goodbye to that part of my life. Once I surface from SD in the future, then I will have to look for something new. I will be happy just to be well and able to spend time with the family.

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]

Hi Wayne – yes I am okay with corn. However, that is individualised according to the tests. Did you test okay for them? By the way, if you've forgotten anything, LW will have written it down on your card and you can always check with her office. I am now a great fan of sea salt and find I dont need much more to flavour my food with – toss my steamed veges in sea salt flakes and Nuttelex, delicious to my taste buds these days! And thank goodness for Country Life Bread (the blue/green label that has no dairy or gluten). Get my complex carbs (and my lunch sandwich) from this bread. Use Tamari (wheat free soy) for stir fries and use shallots instead of onions and garlic and they taste delicious (confirmed by someone NOT on any dietary restrictions!). And BTW there is a GREAT muesli called Free and Lo in the Health food section of both woolies and coles these days that has no wheat, gluten, dairy or any sulphites, preservatives. I eat that with a sliced (red-tipped eco) banana and Australia's Own malt-free soy for breakfast. Okay, here end the food tips for now 😉  Be well! Lynnie 

P.S. on the salicylate front, I now also use non-perfumed shampoos and skin care. And my sense of smell and taste has come back with a-vengeance……I dont need or even like heavy flavours or perfumes any more. Am attaching a Fact Sheet on salicylates for your info if you're interested. Let me know if you'd like one on sulphites also. 

P.P.S. Maybe (judging from your avatar pic) your next career could be as a Life Guard!   

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,

When I was over in Vic for all the testing, I was a bit of a toxic mess having just finished 2 weeks of clindy iv in hospital. I was sensitive to everything, and hoping this time when I go back on May the 14th, that I will be OK with corn. I think they will have an easier time with me now that I am in better shape. My taste buds are still adjusting, but wow, like you, have I got a sense of smell. I cant believe just how accute my sense of smell is now. I'll have a look at that country life bread as it appears as if I may need more complex carbs because my weight (and Helen's too) has been dropping significantly and it will need to stabilise somewhere around my (our) current weight. Helen cooked a loaf using a bread mix by Springhill called The Real Bread Mix. It is lovely and soft, and is free of – wheat,gluten,dairy,egg,nut and soy. I'll check out the muesli you mentioned too.

We have a friend who has got MS, Dx about 5 years ago and at that stage it was progressing badly for her. She heard about a medical professor from WA who also has MS, Dx about 10 years ago and he wrote a book on how he controlled his MS with diet. For the last 2 years now she is doing fantastic and virtually symptom free. We're going to catch up with her and swap recipes. It seems to reinforce just how important diet is in fighting disease.

We are eating from foods low in salicylates and I'm allergic to sulphites, so a link to the fact sheet would be awesome.

All the best to you Lynnie

Wayne     P.S. The photo was taken in our favourite place at Esperance

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 – the Country Life bread was actually what LW recommended and, for me, it's been a life saver in terms of allowing me to eat bread that actually tastes like bread and not a brick!. I dropped a huge amount of weight (over 12kg) initially but did stabilise (and, by the way, LW has some drops she can give you if you need help with that). I settled at 51-52kg and then, over time, put on a little and hover now between 53 and 54kg, which is good for me. Yes, I agree diet is super important to the healing process. I'm attaching the fact sheet on sulphites for you. BTW, these come from a fantastic website set up by Sue Dengate who runs the allergy clinic at RPA Hospital in Sydney. It's called http://www.fedupwithfoodadditives.info. There's heaps of info all over the site. Its downside is that it is really hard to navigate (think probably a low budget site set-up) but definitely worth looking through and dipping into when you need it. Lynnie

P.S. my next appointment in Victoria was scheduled for June 18th but am thinking of bringing that forward. If it looks like it's any time close to when you are there, would be nice to meet up.

 

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)

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