Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; In trouble

How are you doing Seb?
I know you're having a hard time.
Just wanted to check up on you.

Seb,
Getting your hands on that book is a great idea, for you and your mum. I picked my copy up at a Borders store without having to order it. I think there is one in Wellington now, so you could give them a bell. Another place to check out is the public library - I found a copy in my local one in ChCh which I used before buying one. You could also get in touch with the Arthritis Society. They have books that they lend out, and the ChCh branch had a copy of the book too. You might have to be a member first though.

I forgot to mention, but I first heard of the NSD from my rheumatologist. A specialist, so trumps a GP! She had patients who'd had success with it, and while she wasn't so convinced by it herself she did tell me about it as something I might like to consider.

If you haven't been in touch with the Arthritis Society it is worth doing. They have free one on one sessions with an educator, and you don't have to be a member for this. The sessions are held at pharmacies throughout the city, or they were when I had one, so there might be one nearby you could get to easily. They can help with things like a referral to physio, and also have groups that meet regularly. Having found us you know how good it is to have people who understand what you're going through. I bet they can put you in touch with some local teens.
Their website is here.

Hey guys,

Thanks for the help.
I was feeling better for about a week then i ate some chicken with soy sauce on it and been in this flare for a few days now. Is ice cream ok?

Also having problems with my hands, theyre sore and i cant play computer or anything

Also another question,,

My mum says my skin is going yuck because im eating too many fatty food. is this true?

ok guys, even after showing my mum all of this, she still is on the side of the medical "professionals". She says shes spoken to a number of "professionals" and none of them agree with the diet.

She says:
"what about all of the people that the diet doesnt work for."

Even after i tell her my own success she still doesnt believe me.

She thinks this diet might be bad for my health at my age?

Seb, I have been on this diet for 13 years. Another 13 years of drugs would have done much more harm. I don't think 'professionals' could deny that.

Soy sauce has wheat in it...stick to tamari sauce instead.

Ice cream...check ingredients for starchy thickeners (additives with number in the 1400 range) and test with iodine.

No. Actually acne can be a side effect of prednisone which I know you were on recently. Your mum is scared and she loves you. She sees you in pain and just wants you to be OK. She may also be slightly in denial and hoping for a simple solution of a nice tidy medicine from a nice friendly doctor to fix you right up. It's not that easy or all AS patients would be doing that.

The problem she is overlooking is that most of the drugs offered do more harm than good in the long run. The diet seems a safer option to me than the rather scary list of side effects that come with long term drug use. Just google the side effects of methotextrate, prednisone, sulphasalzine etc and you will see what I mean.

Yes, you may lose some weight but the hard core drugs can do a lot worse for some people. Just have a look on the main support board here and read the number of people on all manner of meds and STILL in pain every single day and getting worse every year! How is that a better option than the NSD? For some people they have no choice and for various reasons cannot or will not do the diet. But you have a choice and it seems the diet DOES work for you.

The "professionals" don't believe in it because they have no knowledge of it. They can't go recommending something they know nothing about. They have no dietary training unfortunately. Their forte is medicines and so that is what they offer...and fair enough.

I'm sorry Seb, I hope you can find a way to get thru to your Mum.

Oh Chelsea that was SO WELL SAID!

I didn't respond to Seb's questions because I knew someone else would say it better.

Seb, I hope you listen to what Chelsea said - and maybe show her reply to your poor worried Mum.

I will add that at the age of 23 when I was so bad I could barely walk and was in agony - my specialist (who knew nothing about the diet) tried everything BUT meds to try and help me as HE was TERRIFIED of putting me on hard core drugs at my age (let alone a 16 year old) if you can sort this through diet, Seb, it is the best option. He tried physio, injections and all sorts. Then I heard about Dr Ebringer - got a referral and he started me on the diet... it changed my life, Seb and I have never needed to take any medication for my AS.

You would be shocked at what long-term use of some meds can do to you - and you are so young.

You still need to be testing everything with iodine, hon, because you are getting caught out on things which could ruin the success of the diet for you. Please make sure you get some! (sorry I'm being bossy - you have enough people telling you what to do).

By the way, did you read my post in the diet section about NSD being like antibiotics and not getting caught out on the diet? I was aiming it at you and other newbies...

Keep in touch Seb - and make sure you do lots of searching and reading around this site so you are armed with information to base your decisions on.

Take care

Hey, seb:



Professor Ebringer has done enough studies on his LSD to demonstrate that diet works for the vast majority of people with AS--in the HIGH 90%!

Because You have already demonstrated success, You are specifically not in the 3-5% of people the "diet does not work for." In actual fact, some of those 3-5% actually cheated during the test, if You can believe that--eating potatoes and probably other starchy things, also. So how many people are honest enough?! I was surprised at the great compliance rates.

In the end, we are alone with our AS, and although we can tell other people that "diet does not work for me," we cannot fool our bodies into nagging us for the best treatment in the world.

I am one who was damaged considerably by drugs. Until I began taking NSAIDs, I had no kyphosis and could turn my head side-to-side, also. I did not have kidney stones, iritis, knee edema, plantar fasciitis, ulcers, diverticulitis, or TMJ. Then, after only about two years into these drugs I began developing these conditions which are all possible with AS--conveniently for the physicians who can claim that "Your case of AS was just too aggressive," but I know the truth: My AS was MILD with rare severe spikes until I began NSAIDs, then it became aggressive and severe due to these drugs.

Not one of my physicians (and I went to some of the most vaunted "professionals" available) wanted to do me harm, but because I participated, I was harmed very much and my life (my body) will never be repaired--I cannot go back, but I can help steer others away from the same slow-motion trainwreck.

If You have AS, diet is the best thing and best tool we have even today. Find some good and safe supplements, and thrive on the diet. Get active at least two hours daily and have starch-free treats available at all times, and Your mother will not regret it; You will overcome AS.

HEALTH,
John