Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; From a Rapid Boil to a Slow Simmer

Hi Guys,

Well, that's how I'd describe the change in my husband Jon's symptoms since he started the NSD in June this year. Thought I'd give a bit of history for the newbies.

Pre diet, the AS was giving him a real walloping and was showing no signs of slowing down. He had problems in his middle and lower back, ribs, shoulder, elbow, both knees, both ankles, both heels & achilles, couple of toes and one finger! At that time his pain levels were around 8 or 9 out of 10 every day. He could hardly walk, couldn't work. We were both really scared and were about to apply for his disabilty insurance because we could see no way out.

Then I stumbled on this website and found out about this diet and he's been making steady progress ever since. Now his daily pain levels are around a 4 and if he has a flare up (usually due to something dodgy he's eaten which he knows he shoudn't have) it's only up to about a 6 and he recovers within 2 or 3 days. So his pain is no longer debilitating and he is able to work full time now. He is back to being his chirpy self again.

However, it appears at this stage that the AS is still progressing. Since starting the NSD a couple more toes have become affected (we can live with that) and also his neck. But pre-diet, when the AS went into a new area of his body it really walloped it, with severe pain and swelling. Now when it goes to a new area it's still just a slow simmer. So I am hoping that given a few more months his pain will be down to a 1 or 2 with no further progression. Fingers crossed. We can't wait to go back to his rhuemy and see the look on his face!

So a huge thank you to everyone here. Tim, John, Zark and Bilko - you guys are absolute legends. And to everyone else who has answered my questions and given encouragement - thank you so much. Even by just reading other people's posts and questions I have learnt so much. I know that this website has changed our lives completely. If it wasn't for the NSD, Jon would be in a wheelchair by now I am convinced of that. And no doubt taking a very nasty cocktail of drugs as well. Thanks to you guys, I have my husband back and for now, the future looks rosy.

Love Chelsea

Chelsea,
Aren't you just the best, for updates and encouragements too. It's inspiring to hear about your husbands progress. I think I remember your first inquires in the old forum. So he's come a long way in a short amount of time and I'm sure he knows the gem he has in your full support.
I started the NSD a bit later than your Jon. Have had starts and gos with it but when I think back about how hard it was to even walk at all, I should be more grateful. As Jon, I've had the little things go, thumb, toe. Oh, so minimal compared to legs, hips, and back.
So likewise I have a whole crew on this forum to thank. They've been magnificent in their support.
Klem

Hi Chelsea,
I'm glad to hear your "testimony" (if you will) about Jon's illness and the success of the NSD. Reading various posts makes me realize how mild my AS is in comparison to what some people go through. There have been times when I've been in severe pain, but I haven't been close to being disabled with it. Since going on the NSD, I have days where I have some sensation or discomfort, but I really can't even call it pain. There are others days when I definitely have the "niggles" as others have called them. I've been struggling with more "niggles" this week than usual. I've actually been wondering if I need to break down and follow my rheumatologist's advice to try sulfasalazine. I've been hoping to be free of meds with the NSD -- to have complete remission -- but at this point, even though there's been significant improvement, the swelling in my big right toe just won't go away, and the hips are feeling a bit achy again, etc. Maybe it's just a matter of patience and time for me. Maybe I have unrealistic expectations!

I was wondering if Jon takes medications in conjunction with the NSD?

Blessings as you guys continue the journey! Paula

Hi Paula,

Jon is still taking Bextra for his pain but has been able to cut the dose in half now. Ultimate goal is to get off it completely and just manage on the diet. Perhaps a few months away yet.

Just before he started the diet we went and saw his rhuemy. This was probably when he was at his worst. The rhuemy prescribed sulphasalazine. Jon told him was going to give the diet 1 month and see how he went and if he had no improvement he would try the sulphasalazine. So he hasn't had to take it yet which is good. Hopefully it stays that way.

In the first three months on the diet he did have significant improvement and reduction in swelling but a lot of the pain was still there and we were thinking he would have to take the sulphasalazine if things didn't get any better. It's actually only been since September that his progress has leaped ahead. Coincidentally, this was after he did the apple diet so perhaps that contributed. Or maybe it was just that it took us that long to get the diet sorted completely in terms of what he could tolerate or not.

I hope you achieve your goal of remission even if you have to take the sulpha to help you along. Apparently it has mild antibiotic action against the kleb so perhaps it will help.

All the best
Chelsea

Great post Chelsea,

I do a similar post 1-2 times a year hopefully to encourage others to take a stab at the diet. I find the diet as a lifesaver... a 2nd chance at life almost.

Thanks again for posting!

Tim

If you get up one more time than you fall, you will make it through - Chinese Proverb

Kiwi,
I have been on the diet for more than five years now. I went from a boil to a simmer to occasional minor flare to .... nothing at all - but this process took about four years. It is clear from this forum that reaction to the diet is very personal, but my own experience was that as I saw the diet working I made a bigger effort to cut out all serious starch from my diet, but I have never worried about small amounts of modified starch in salad dressings or whatever (other people seem to react badly to this). I only made the final step from occasional minor flare to nothing when I gave up beer (I can drink other forms of alcohol). My advice to Jon would be to keep a diary of everything he is eating and find out what sets him off.

As to sulfasalzine, the general view from this forum is that it is one of the only drugs that can be used effectively with this diet as it has mild anitbiotic properties and does no damage to the gut. I have used it, but the results were inconclusive, although it certinaly did not do any harm. Why not give it a go or at least read back through some threads on it from this forum? The only downside would be that your rheumy would then say that all the improvement was due to the sulfasalazine and not the diet!

One final thought is that I have found that exercise has been a great help to me in regaining my mobility, so if possible, try and get Jon to do as much as possible without pushing the pain barrier.

I hope this psot gives you some encouragement to keep up with the diet until he achieves full remission.
Kind regards,
Charlie

Chelsea - I much agree with our portuguese branch concerning exercise. Jon will probably have some mechanical damage which could worsen with time. Contradictory as it might seem, the best protection is exercise - of the right type; the usual AS stretching and mobility routines, swimming and walking. I am quite sure that if I hadn't followed the advice given me 27 years ago to start swimming regularly I would be in a very bad way now, diet or no diet. It has to be built into the daily grind, so before feeding him put him through his paces.

And what's he then that says I play the villain
When this advice is free I give and honest

Edited by bilko on 10/21/04 07:46 AM (server time).

Your words are encouraging to me, too, because I've been feeling a bit frustrated lately. It seems like I take a few steps forward and then a step or two or three backward again. I just need to be more patient. I appreciate your thoughts on sulfasalazine and exercise, too.

Thanks! Paula

Hi Charlie and everyone, thanks for your replies.

Jon keeps a diary of what he eats and also records his pain level out of 10 every day so he can keep track of changes. He's only been doing this for the last couple of months though so if he keeps with it we should be able to weed out the last trouble-makers. Charlie, I am so happy to hear of your results - very encouraging. Although it feels like he has been doing this diet FOREVER, it's only been 4.5 months so we've got a ways to go yet, eh?

I've been trying to get him to come around to taking the sulphasalazine but he won't have it. He's terrified of side effects etc even though most people are fine on it and if you have any reaction they get you off it. He's quite an anti-drugs type of person and even wants to get off the Bextra as soon as he can. But I have reached a compromise with him - if he doesn't improve any further by the new year he will start the sulphasalasine. So we'll see!! Not that I want him to have to take it particularly, but I just want him to get better and want him to keep an open mind about treatments.

As to exercise, he does a stretching routine every day and we have an exercise bike he does gentle exercise on every couple of days. Swimming is something I think he should try and we only live 5 mins drive from the thermal hot pools so maybe I'll try and get him into that this summer.

Thanks for your input - very helpful!

Chelsea