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Joined: Nov 2002
Posts: 1,039
Iron_AS_Kicker
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Iron_AS_Kicker
Joined: Nov 2002
Posts: 1,039 |
Don't yell at poor Bilko, he gets in enough trouble every time he slips the surley bonds of the diet section and wanders into general discussion without putting MY words into his mouth.
I continue to remain surprised at the number of people who cannot realize...you really are what you eat, because you cannot be anything else.
I will leave the scientific abstracts for a moment and go to real life experience:
I invite anyone here to feed their pets or a horse, even, a grain product which in turn will produce a food intolerance reaction, mimicking disease and then causing other diseases thru weakening and stressing the poor creature's immune system, and then tell their veterinarian that "it's only a theory" and you don't intend to stop doing it, and see what sort of reaction you get if instead you want to put it on steroids, for instance.
I invite anyone here to put an elderly crippled dog on some sort of senior dog diet and start feeding it a perna mussel shell supplement and see it run up the steps again a few months later, and then wonder how to do it to yourself.
I also invite them to raise multiple generations of animals prone to arthritis, such as certain breeds of sheep, as I have done, and tell me that DIET has nothing to do with said animals' overall health status.
Do all sick pets/animals have food allergies? Or are they overloaded on simple carbohydrates? Of course not. Do some? Absolutely yes. Have some of mine? Absolutely. Did changing their diet create a change in health? Absolutely.
And that is why dismissing DIET as useless, including implying the proponents are nothing but snake oil charlatans, is not going to go over well with me.
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Joined: Jun 2003
Posts: 3,581
Royal_AS_kicker
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Royal_AS_kicker
Joined: Jun 2003
Posts: 3,581 |
Julie,
I agree and I would n;t expect it to work for everyone!
David
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Joined: Feb 2002
Posts: 942
Senior_AS_Kicker
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Senior_AS_Kicker
Joined: Feb 2002
Posts: 942 |
In reply to:
I will leave the scientific abstracts for a moment and go to real life experience
Aye, and there is the crux of the matter. The Klebisella theory is just that, a theory. If you want to use a scientific inquiry, rather than a pseudo-scientific approach, when the evidence fails to fit the theory, you adjust the theory rather than discount those bothersome facts.
Then there are people's experiences, which, hopefully in a supportive community can be validated. I believe Dan, I believe you, I even believe bilko when you say that a change in diet has been helpful. I hope that you will feel better and continue to feel better. I can make those affirmations while taking issue with the Klebsiella theory or stating that following a starch free diet failed to cure my AS.
In reply to:
And that is why dismissing DIET as useless... is not going to go over well with me.
You may want to re-read the thread, you are the only person who has made such a general statement. No one else has said the diet is useless. What someone said was that it failed to work for them; and, someone immediately supplied the NSD party line: obviously the person failed to follow whatever the protocol of the day is. (You may want to ask yourself why it is so important to challenge someone who says that it fails to work. Hint: It is why clinical studies require large numbers of patients and use extensive controls.)
In reply to:
Implying the proponents are nothing but snake oil charlatans is not going to go over well with me.
Well, advising people to avoid medical advice is abhorrent to me, so I guess we will have to sit with that discomfiture. Personally, I would disagree with the phrase, "snake oil charlatans", since no snake oil is being sold and the term, charlatan, implies someone who knowingly convinces somebody of something that is false.
Still, there is plenty of harm that can be done by someone with strong beliefs. And, that is the bottom line and what is evident in this forum and elsewhere. We are talking about a belief system; people dislike and react to their beliefs being challenged. Which is understandable and it is NOT science.
Attacking the person who disagrees with what you state may strengthen your belief, it may strengthen the popularity and adoption of the belief temporarily, it does nothing for a theory.
On the other hand, charlatans do employ pseudo-science -- the trappings of a scientific approach -- to help convince people of their claims. The use of a pseudo-scientific approach is another common characteristic of quackery. In other words, if what is offered is a scientific "breakthrough" or "miracle cure" that has been held back or overlooked by the medical community and if testimonials or case histories from satisfied users is the proof that the product works, then you may want to put on your tin foil hat, whether or nor any money has changed hands.
As one writer about nutritional quackery advises, "A great way to check their credibility is to request scientific support (not just a story) for any claims they make. Don't expect a reply."
Best regards,
jcwinnie
"The great tragedy of science -- the slaying of a beautiful hypothesis by an ugly fact." (Thomas Huxley)
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Joined: Jun 2003
Posts: 3,581
Royal_AS_kicker
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Royal_AS_kicker
Joined: Jun 2003
Posts: 3,581 |
JC this is n't aimed at you, but it seems to be a pertinent point
In medical science.......What drug, treatment, surgery has 100% improvement or success rate?
Why is is that some drugs are thought to be useful when they have marginal % improvement over the placebo group........A plaebo group rarely keep the numbers of responders up over time esp in a disease like AS......whose sufferers are known have a low placebo response.....
why is it that some IBD patients can take nsaids, I can''t and mines not extensive.....only 40% flare on nsaids and 20 odd on COX2's.......
A recent study in physio for AS says that it raised more questions than it answered the results were not as predicted, or considered possbile. then they blamed the plaecebo group.....
But at least they were honest enough to concede that group physio had no improvement over at home physio and that exercise does not stop the disease progressing. So at least it was an honest study!
If you dig through the research MTX and Asuplazine do n't work on AS,
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So we have just excluded all the major things you are supposed to do to beat AS.......Diet(?), exercise(?), nsaids(?), DMARDS(?)..........
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Just an aside on patients that handle chronic disease better. They have a number of attributes, one of which is a beleif system ie spiritual, in themselves or they have some influence over the disease........
sense of humour was missing which is probably an important one! Also good support, which is why we are all here, I hope!
David
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Joined: Sep 2001
Posts: 439
Black_Belt_AS_Kicker
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Black_Belt_AS_Kicker
Joined: Sep 2001
Posts: 439 |
What my rheumy back in Maryland told me was that a ketogenic diet can be risky and difficult to manage over the long term.
The threads Evelyn referenced have some pointers to Medline abstracts discussing this...I'm working today, and don't have time to dig....
My rheumy here in Texas says that there are no dietary interventions shown to be effective for AS.
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Joined: Mar 2004
Posts: 263
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Mar 2004
Posts: 263 |
Well said JC!! If I was able to see multiple studies that have been published in peer reviewed journals that consisted of large N's, double-blind controls with rigorous experiemental conditions that safeguarded against confounding factors, only then would I begin to see NSD as scientifically sound. Unfortunatley, while personal experience, though tied to intense emotion and conviction, cannot make a scientific case for NSD. It is still my opionion that alot of the positive effects we see from what we think is due to NSD may come from confounding factors, the most apparent may be weight loss itself. Although this would have to be studied as well. Play Nice!! Rene a.k.a Julie Kodi 
Julie Kodi
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Joined: Jul 2001
Posts: 3,451
Gold AS Kicker
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Gold AS Kicker
Joined: Jul 2001
Posts: 3,451 |
Hi Kodi, There are a lot of people here who don't know for sure just what is wrong with them, or may have AS along with some other problems or have not given the diet a fair shot. This shouldn't be have any bearing on the diets validity. The diet and Embrel are the only 'treatments' that I have heard of in the five plus years of reading this forum, that have had any LASTNG positive results. I haven't needed support (for my AS) since July '99 because I haven't had any symptoms since I started the diet but I wouldn't endorse the diet if I were basing it on my reaction alone... I know for a fact that there are more than just a few past members who have returned to their normal lives with just a change of diet and a bunch who have had a dramatic improvement that are still here. The diet is endorsed here because it works. Take Care, Pete  "You all laugh because I'm different...I laugh because you're all the same." Anonymous
Pete [color:"green"] "Maybe the problems of two people don't amount to a hill of beans But this is our hill. And these are our beans!"[/color] - Lt. Frank Drebin
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Joined: Aug 2004
Posts: 636
Master_Sergeant_AS_Kicker
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Master_Sergeant_AS_Kicker
Joined: Aug 2004
Posts: 636 |
Oh, should I stick my foot (or mouth) into this or not? It's kind of scary. First, I will say that many of you on both sides of the issue have some good points. But, here's this dreadful personal experience again, the NSD has made a big difference for me. I started it in August after a year long flare of hip,spine, & rib pain, recurrent iritis and arrythmia, AND I think I'm in remission -- at least I'm having many days that are pain and symptom free. Just a tad of risidual puffiness in my right big toe, but even it's feeling pain free. True, I've lost some weight on the diet -- about 16 or 17 pounds (but I still have about that much to go to get to my ideal weight). I guess I wonder if those who try it for whom it hasn't worked have really tried the diet "whole hog" for a long enough time to rule out whether it is effective or not. I guess that's what many on the NSD may assume, and perhaps it's presumptuous of us. But, on the other hand, if one hasn't given it a genuine try, it's seems prudent to give it a chance if it might indeed relieve pain and eliminate the need for medications that have the potential of ugly side effects. Scientific studies or not. (Oh, by the way, I ditched my meds -- except for the Predforte in my eye -- back in September, too. I go back to the opthamologist this month and am hoping to be released finally from the Predforte as well.)
My doctor is skeptical that the diet alone can do the trick. She wanted to put me on suflasalazine when I was in there in Sept., but I begged her to let me give the diet a fighting chance until December. It might be that I'll need to resort to medications in addition to the diet at some point, but I'm hoping that she'll be impressed with my results when I go in for my Dec. check. I'm impressed with my results anyway. True, I have to turn my head away when my family eats homemade rolls (that I made!!!) or brownies, but somehow, it just seems worth it.
I'm sharing this as my experience, and I certainly don't want to come across as absolutist. The great thing about the forum is that people can hear many voices and then can discern the best course of action as an individual.
I extend best wishes to all of us as we search and strive for wellness whatever path we take!!
Blessings! Paula
Meanwhile I live and move and I am glad, enjoy this life and all its interweaving. Each given day, as I take up the thread, let love suggest my mode,my mood of living. (Fred Kaan, 1975)
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Joined: Jul 2001
Posts: 3,451
Gold AS Kicker
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Gold AS Kicker
Joined: Jul 2001
Posts: 3,451 |
Thank you! I was just about to make less than nice reply but you calmed me down some. The problem I have is that, to some people, the answer has to come from science, when all I need is to try it and if it works, use it...and suggest others to try it. For that, I become the enemy. To suggest that there was some sort of plot to force the NSD on the unsuspecting membersuip made me laugh. The fact is, the NSD forum was put in to keep any of these arguements OFF the main forum and to give those interested a place to learn about it in peace. When a newbie posts an NSD question on the main forum they usually are referred to the NSD forum with maybe a couple short testimonials...doesn't sound like a plot to me. Although I am not ashamed to say I will push the diet to any and all who will listen. I'm very happy that you have found some relief...I sure hope you can get to the point where you can drop the meds. The fewer the chemicals the better! I'll keep my fingers crossed for you:) Pete "You all laugh because I'm different...I laugh because you're all the same." Anonymous
Pete [color:"green"] "Maybe the problems of two people don't amount to a hill of beans But this is our hill. And these are our beans!"[/color] - Lt. Frank Drebin
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Joined: Mar 2004
Posts: 263
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Mar 2004
Posts: 263 |
Hi Pete Just to let you know Kodi is actually my cute little puppy. I want to tell you that I am so happy that you have had such great results on the NSD. I truly feel that encouraging others to try this diet and try it wholeheartedly and for a long enough time period is absoultely sensible and valuable. I think we were just debating essentially why it may not work for all, that's all. It's got to be frustrating that those that truly try the diet and find no relief can't understand why it doesn't work for them. I think some of this thread was us just debating why that may be. It really doesn't matter if science proves it or not. If it works great! That alone proves its validity to the individual who has success with it. It is for those in which it does not work that we try to offer alternative ideas as to why, Maybe it just does not work for all. Rene Rene a.k.a Julie Kodi
Julie Kodi
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