Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; NSD failure data

I rarely chime in because there are people on the site with a great deal more knowledge than me.

I had very slow, patchy progress until I adopted the paleo auto immune protocol.
NSD...everything tested with iodine
Limited sugar
No eggs
No nuts or seeds
Reduce omega 6 increase omega 3
Basically meat, fish, oils, spinach, herbs and salad greens.

I indulge in beer and dark chocolate. If I dropped those I would be doing even better. I have pain levels 0-2 on a daily basis. I am working through mechanical damage with 30 minutes yoga per day ( 6 weeks now, every day!. Again slow (very slow) progress but I am moving in the right direction.

Its full on and restrictive but I think it works. If I ever got worse I would DEFINITELY begin the GAPS program. To me it is an absolute winner but even more hard core.

Almost all vegetables and fruit are starchy in Sydney, Australia. That is the most frustrating thing. I have stopped experimenting as I was sick og flares

People,

Firstly thanks for the replies and attention. The optimism here is heartwarming and I'm sure you make hundreds of sufferers feel better everyday.

I have a problem with the methodology here.

(1)

Regarding the pain scale. It's obviously a subjective term. For all you know I could be a cry baby, or the exact opposite. Some of you say you feel 1 out of 10 now, what does that mean? do you still get flares?

You say you've noticed a change after years, why go forward with the diet then? because Ebringer said so? Because of other people's experiences? The Ebringer patient who had her ESR down to normal levels after years of LSD may be explained by the fact that she's also TOTALLY fused. The body has no more collagen to fight. Having said that, I reiterate that I'm against NSAIDs and other medications, because that lacks common sense. It's just inducing poison daily.

(2)

Regarding having unrealistic expectations from the NSD diet. No. I'm aware of the argument "it took you years to get sick, your body needs years to recover". But what's the hypothesis here? Do you think you're reversing the level of antibodies for Kelbsiella and collagen over the period of years? Then you shouldn't get flares at all after a period of time? Can anyone post some organized data please? (Alinus' "much more like my own graphs in my first 6 months". Can you refer me to one of your 500+ posts where you show this? Does that include the food you consumed during your test period?)

(3)

The frequency of unexplained remissions in this disease is larger than the time it takes for the diet to supposedly kick in. That's a fundamental methodological flaw.

And thanks again.

I have found much relief from the NSD. I cannot eat beef or eggs, so basically I eat non starchy fruits and veggies,chicken and turkey.I think I buy one of those cooked rottissere chickens from the grocery store at least everyday. I also have some soda and some hard candy and it does not seem to bother me too much.

I was in so much pain I don't want to go back, so if I have to eat a very limited diet and not have pain 24/7 that is okay with me. I would like to indulge at family parties and eat whatever I want, but at this point I am content and feeling so much better for once.I am looking forward to next month's lab results, from the way I am feeling I know my sed rate must have dropped a lot. I can't wait to see the results.

I cannot eat dark chocolate and I suspect nuts might be a problem,so maybe they are for you ??

I hope you get feeling 100% and figure out the best regime.
Take care!!

I hope i can attach the image.
I've started the diet in feb 2010. I did not kept graphs at that time, but i can give you the graphs from where i've started to keep them.

I do keep a daily food journal since feb 2010 - with pain scales, joint involvement, bowel movements, energy levels, stress levels and so on, but it is in my native language romanian, so i do not know if you can translate it. If you can translate it and think it helps you, i can e-mail it to you.

The red line represents an 1 week average of my general status - based on my daily points i gave to my AS problems & Ulcerative colitis disease activity.
I've considered a scale from 1 to 10, divided in 5 grades, in wich
1-2 poins means - dead/nothing left to do, irrecuperable,
3-4 - 1-3 hour of night sleep, the urging need to go to hospital or take every pill available in order to feel better, almost unproductive at work.
5-6 - manageable but persistent pain, 6-7 hours of night sleep, with the posibility to perform my daily activity without big problems.
7-8 - residual pain, mostly unimportant, higher levels of energy, good sleep, active at work.
9-10 no pain, no problems, perfect day.
I've never reached 9-10 points yet.

Since in 2008-2009 i was mostly in 2-4 area, i consider diet helped a lot, by achieving a 6.86 average in the past 6 months - wich i consider remission (fragile).

The blue line represents the number of bowel movements / day (a 1 week average)




upload psd

PS
I've gave up sometime ago to rationally explain why diet has this effect on me. I am no doctor, so my experience is only anecdotical, but is enough for me to keep on this track.

PS 2
I can give you a list of foods that could be consistent with LSD/NSD but for me are problematic:
Eggs.
Beef meat.
Brocolli.
Spinach.
Honey - i do use it when i need something sweet.
Onions.
Coffee - at this point i reintroduced it - 3-4 cups/week..
Almonds - but i do "cheat" one time per week with an almond flour pie.
Oranges.
Grapefruits.
Lemons.
Beer - but i do "cheat" with 1-2 lagger beer once in a while.
Cogniac/Brandy.
Cucumbers.
Blackberries - only in pies.
Apples.
Tomatoes.
Olives.
Olive oil - only in small qtties.
Grapes - except white ones (which i cannot handle anymore after the antibiotics).
Cheese - except the ones in my signature.
Cherries.
Sour cherries.
Oregano.
Melon.
Garlic.
Lettuce.
Butter - in big qtty.
Peanuts.
Bananas.
(could be more, but this i can remember at this point).
From time to time i do eat those foods, but mostly i avoid them.

Regarding my 500 posts, if you will spend some time to read them, you will find out that i've had to pass through many problems before getting here.

Thank you for that Alinus.

1. "Starch diet" means "No starch diet", obviously, right?
2. Did you feel worse when taking antibiotics late August 2011?
3. When you were on a regular diet, did your general pain fluctuate the way it does on the NSD?
4. You average your general feeling during a week. Do you still get flares?
5. when you get a flare how does that affect the weekly average?
6. How long are your flares?

As for finding logic in the diet. If it works, ok, I'm happy for you. But you're still suffering. I want to stop suffering, and I'm shy about it.

Keit, thanks for your input,

1) Do you use Salt with the meat/fish?
2) Can you specify which herbs do you eat?

Thanks.

Really liked reading this thread. a4 I relate to your frustration a lot! I've been NSD for nearly a year and a half and I've only had small improvements. I've tried antibiotics targeting klebs. In higher doses it did make me feel better but the second time around on them a few months later has left me unable to tolerate some of the staples in my diet that maintained weight and energy. Dairy and fruit.

Ever consider that you ate more alkaline foods during good days and too much acid foods during flares? I've been checking my urine ph for the past few weeks and the closer to alkaline I get the better I feel. I'm talkin knees that are swollen go nearly normal. Pain in general goes down. I have not been slightly alkaline yet but I'm really trying hard. I'm a bit obsessed with testing but I'm definitely noticing a connection. Earlier this week though I tried eating all alkaline for a few days and felt awful and urine was really acidic. Now I got the meat back in and feeling better. Tho meat is acidic, I've found my body needs it and it makes me feel better. I notice different degrees of acidity with diff types of meat. ex: shrimp is less offensive than chicken. I wonder if free range organic chicken may not be as bad? I dunno.
I'm not saying that ph is your problem. I'm just simple sharing something I've noticed.

I feel for you and I'm about at my wits end with this "eat this not that" nonsense. It truly is very individual AND terribly frustrating to the point of sobbing at times.

starch diet - when my points dropped in that graphic - means a regular diet, containing starch. you can see there how things got better - this means i gave up starch again at that time.


Yes. as you can see. much worse. there's a thread i've started that can be read in this forum about it.
Both antibiotics & the probiotics i've took later contributed to my flare. It was somehow the worst i've experienced since on this diet.
John said that i've used the "wrong" antibiotics. I did not tried to treat my AS with them, they were meant for other problems.


I've said i was mostly in 2-4 area. So it was very bad. In 2009 - while also on NSAID's - i've had 3 months in which the bed was my "home".


My daily points are between 6 and 8 now. I do not consider this a flare. I do have daily pain - but as I've said - not so high. It mostly subsides in 1-2 days. And it is not debilitating.


you can see this in that "antibiotics" area, or in the "starch area".


before diet - permanent.
after the diet the pain subsides after 1-3 days usually if i do it as in my signature.




Well, there is suffering and suffering. I am happy where i am. I am not looking for a miracle, i've never did, but for something to help me through the day. And it does. It gave me my life back - not the so perfect - but enough for me to consider myself happy after all i've been through.

Good luck.

Alinus, thanks for the clarifications, I wish I had data like this from all members here, over periods of years. This would greatly affect my motivation to go forward with this for years.

Sunnypower, thanks for your input.

I have checked my Urine pH and for two weeks and it ranges

between 5 and 5.5, i.e. more acidic than normal. However, it does not seem to be an indicator for my flares and pain.

If you're suggesting your urine pH is indeed an indicator, then I would definitely like to see that. i.e. show a connection between your pain and your urine pH by, again, a graph or a table over a long enough period of time. Otherwise I fear our feelings and intuition is just a big pile of subjective confusion. If you're a testing enthusiast this should be fun for you. I dislike testing but I'm aware of it's necessity. I htink the pH test deserves documentation which I never did, so I'll do that for a few months and hopefully post the results.

As for frustration... what can I say, I feel for all of us.

Thanks for the input.

Funny I was thinking I really need to start keeping a log of food intake vs. acidity vs. pain. I too am about 5.5 when I feel bad which is always but it changes constantly depending on what I eat. One day last week I reached 7 and I was feeling pretty darn good. My knees were almost normal sized (they haven't been that small since the start of NSD) and in general had a lot less pain.

I'm not sure I can graph but I'll try to keep track and share. I'm just curious what your urine ph is on 'good' days.