Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Lost motivation

About the cheese, might it depend on the lactose in the cheese? Some cheeses have none, others do. I heard goat's cheese is usually safe? Might be a very individual thing again.

I have to apologise for my whinge too. I was not in a good head space at all today. Sleep-deprivation getting to me, I think.

Will try to do the apple fast, but not sure if I have the courage. It's so hard to do this whilst working and looking after a child, as I know some of you know all too well.

Thanks for your advice and words of encouragement.

And welcome to the forum Christina. I hope you and your husband will find a way to manage his AS and give him hope.

And btw, 2-4 Celebrex, is that the 100 or the 200mg pill? A rheumatologist recently adviced me to increase my dose from 200 to 300 or 400mg and I get a lecture from the chemist everytime they learn I take this much. They call it an extremely high dose and lecture me about the effects on the lining of the stomach and the gut mainly. It used to help me quite a bit, but now it doesn't seem to be doing much anymore.

Thank you Shauna for your suggestion, get the words back to my husband, well he insisted that he will never do the apple fast unless his leg turns black.

when I mentioned about his pain level, well last night he had the NSD pizza (from the NSD recipe contains almost 1 kg of mozarella cheese to cover the ingredients) and Soya milk (I mixed a drop of the milk with a drop of iodine, turned out fine), and he told me that this morning he woke up with his pain level at 3 to 4.

Anyway, as I'm the one who made him food everyday, so he'd basically eat whatever I make, do you think you could give me list of:
1. Starch free food/vegs/fruits that you can't tolerate so far
2. High carb vegs that's starch free?

3. Do you also have any experience with Low Dose Naltrexone, it worked like wonder only after few days he used it that he could walk again from barely able to get up from bed for 5 weeks back in July 2009. He's been taking 4.5mg every night up to now, but then we had this 5 hours trip outta town in the car the next month, and he screwed up again, and he told me that naltrexone didn't really help again after. He's still taking it though.

4. I read that most people will just walk and walk as part of their exercisento maintain their flexibility (if I'm not mistaken), but to my husband, walking for more than 10 minutes will just kill him after, do you have any insight to this contradictive statement from him?.

To Linella,
he takes 2 to 4 of 100mg celebrex every day. When LDN still did wonder for him, he didn't take Celebrex at all.

I don't know if the NSD works for him as we just started 9 days ago, but according to him, at least his condition is not getting worse and fading away that enable him to stretch harder, and he's been stretching the hell out of the back of his legs for 3 days(including today).

he told me just now that he doesn't really feel the pain anymore this afternoon, even though he still feels funny, but I hope this is a good sign of the NSD.
its 6.30 PM now (Indonesia time) by the time I'm writing this).

Million of thanks..


Christina

Hey Christina,
The walking thing I agree with.Walking was such a painful feat before the diet!Now,I walk on my treadmill on an incline (I work a lot of evenings)or I get out and walk when I can.It's much easier now.I did quit running,though.
It would be quicker to give you a list of things i do eat than don't.
I eat salad w/ spinach leaves,jalapeno,onion,cucumber.
Veggie sides,zucchini,spinach,asparagus(may be a prob due to inulin for some)
The only fruits I eat are grapes and watermelon.
I eat meat,eggs,coconut flour baked goods,and hard candy.
The list is so small I gave u all of it!! LOL
There may be others willing to share what they eat,they may have bigger lists.
I don't use LDN.I don't want to fight a doctor to get it.They annoy me.
Shauna

Selamat Datang Christina!

Quite a few years ago, I spent a couple of months traveling through the Indonesion Archipelago - through Sumatra, Java, Sulawesi, Bali and as far east as Sumbawa. I loved my time there, and we were very sad to leave. Of course, we have been to Bali many times! Every time my husband mentions holidays, my 2 kids (12 & 14) chant "Bali, Bali, Bali!"

What part of Indonesia do you live in? There are a few others here who are there. "Sinta" in Jakarta and another in Bandung come to mind....

I think you are doing a great job trying to help your husband. I would also recommend doing a 2-3 day apple or grape fast, but I was scared to at first too, so don't give up on him just yet!

If you want more information about LDN doses, go to the pharmacy forum and visit these threads:

https://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=341199&an=0&page=1#341199

https://www.kickas.org/ubbthreads/showthreaded.php?Cat=0&Number=361546&an=0&page=1#361546

With regard to the exercise, from the point of view of a physiotherapist (that's what I do for a living!) I think your hubby needs to be attempting *as much as he can* within his pain tolerance levels, to maintain flexibility. However, if it is aggravating the pain, then he should back off a bit (a lot?!?). Otherwise it is like Aversion Therapy - he will not EVER want to attempt it again!

I think he should be taking all his joints through as much of their full range of motion as he can manage several times each day, as well as doing some aerobic (general) exercise for fitness *if he can*. The positive benefits of this regime on the heart and lungs, sleep patterns and mood elevation can easily be nullified if he overdoes it!!!

It sounds as if he is starting to see some benefit from the NSD already - perhaps he will become dissatisfied with an 'incomplete' reduction in pain and come around to the idea of a fruit fast in time, without having to resort to cutting that leg off!

Keeping kicking AS on his behalf,

Louise

The NSD is not easy! One thing that bothers me horribly is vinegar, both distilled white and apple cider. It is very confusing, as vinegar is not starchy. I don't know why it bothers me so bad, but it does. This includes the vinegar in Ketchup, salad dressings, Miracle Whip, etc. There are products out there without vinegar, you just have to look. I had to totally eliminate almost everything but meats and lettuce with olive oil, then slowly introduce stuff back in to discover this culprit. Best of luck with you guys and your trial and errors!

Amanda

Hi Lin,

Firstly, to you. Doing this thing is HARD!!!!!

I wonder whether my own personal experience might help give you a different perspective???

When I first read about the NSD I was so excited as well as fearful, as I l-o-v-e my food, and experimenting in the kitchen (and testing the results! ) I HATE being in pain 24/7... it was a chance to feel better.

I decided that if I was going to give it a try, then I should go NSD, not LSD - too easy to cheat - I know myself too well!)

Like you, I have had spinal inflammation a long time (30+ years)...

For the first couple of months I didn't see miraculous results - but I did notice little things - sleeping longer until having to get out of bed with the biting SIJ pain, less morning stiffness (WOW!) and slowly, slowly more energy and less cranky!

In fact, I have NEVER had the miraculous results that some others have found to be their experience - but then I have seen my MRI!!! I'll bet those who have 'found' the NSD much earlier in the disease process don't have the same degree of mechanical damage that I, and no doubt You have....

Perhaps for those of us for whom the wisdom of Dr Ebringer has come 20+ years too late have false hopes??? I know I did....

I have done a lot of soul searching etc to deal with my disappointment that I am not bouncing around like most others who are 'born again' after trying the strict NSD. I have even 'tested' myself several times - only to be reminded at how much pain I *used* to have!!!

I think when you are in the thick of things (PAIN) ALL the time it is often difficult to see the wood for the trees.....

My suggestion would be to be in the right place mentally first (tell yourself that you are going to do this...) then do a 2-3 day fast with apples - cooked and uncooked, juice etc. Every hour that has gone by, congratulate yourself on being STRONG - because it does take mental courage to keep doing it - can't tell you how many times I questioned my own ability to fast). You should be able to keep your blood sugars up with regular apple eating, and not faint...

Then start clean with bacon and eggs and some simple salads and a little fruit - maybe pineapple for a week, and EVERY DAY, tell yourself you are another day down the Road to Success. Whatever you do, stay away from ALL banned foods - not even a mouthful - or else you are setting yourself up for failure and disappointment, then you will be frustrated with yourself for not following through (he, he - the Voice of Experience here!)

Each week, sit down and spend a few minutes reviewing what might be different about you - better sleep, less pain in one or two regions, less morning stiffness, less difficulty getting into the car, turning your head to change lanes in the car etc.

Look for the Little Things that are part of the Big Picture. Maybe, like me, you will see Baby Steps - and that IS progress!

Oh my gosh, how I wish for the Magic Silver Bullet - but after 30 years of bony destruction - it just aint gonna happen for me - and maybe for you, either...

That doesn't mean that the NSD isn't helping you - just that you will have to be patient and accept what results you can get over a much longer time frame - like staying off opiates for the Overall pain - if you can knock the inflammatory component then you will just have to deal with the mechanical component.

Don't be hard on yourself - you just need to be persistent!

Keep making whatever efforts you can, and PM me any time you need a pep talk, or to be talked out of having that bowl of pasta!

Remember my mantras:

"What doesn't kill me makes me stronger"

&

"A moment's Pleasure - a week's PAIN!!!"

Hang in there,

Louise

Thanks heaps Louise.

All I would like to achieve is to be able to sleep without waking up in pain every hour. And at the moment I'm panicking about never getting a good night's sleep again.

I know it's way too late for me to be cured and I can deal with pain during the day, but just not at night.

Before I decide it's not worth the effort, I need to give it a proper go. So I'm trying the apple diet today, though not sure if I'll make it. I miss my coffee and macadamias already.

And then I'll keep a food diary and record pain levels.

And if I decide it's not working or not enough, I will first try the SCD and only if that doesn't work, I'll try anti-TNF - which I dread.

Quote:

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So I'm trying the apple diet today, though not sure if I'll make it.

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Stop thinking in the negative!

YOU CAN DO THIS!!!

Quote:

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I miss my coffee and macadamias already.

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Just tell yourself how sweet they will taste when you are allowed to have them!!!

HANG IN THERE

All the best, Linella! I know how bad about things I feel when I am not getting enough sleep, let alone with the pain added in. Hang in there!

Along with Louise's fantastically supportive suggestions, make sure you get your hands on some iodine and test everything in your kitchen. Even the things you know you can't eat to compare the reactions. You might be surprised at where that sneaky starch can be found... I thought I had started pretty strictly no starch, including eliminating dairy for several months at the suggestion of my gastro doc. He said it was better to start that way to see if it really did work, and then try adding things back in to see what I could tolerate. But I hadn't been testing everything and was eating things I shouldn't because I had seen somewhere that they were 'safe'. I got away with eating things then that I just couldn't now, as I have become more sensitive. So for me it has really has been a case of fine tuning things over many months because of that. But when I fall off the bandwagon accidently or otherwise, I really do know about it.
One of the extra challenges of the diet is that fact that there are some some non-starchy things that one person tolerates, but another person doesn't. This is where that food and symptom diary will be your friend. And if there are any foods your're not sure of, even with testing, don't be afraid to ask. I have learnt a lot from the responses when people have posted those kind of questions.

"YOU CAN DO THIS!!!"

I just can't do it when I'm at work. I could do it at home I think. I'll have to start again on the weekend.