|
Forums33
Topics44,197
Posts519,915
Members14,168
| |
Most Online3,221
Oct 6th, 2025
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
|
Joined: Apr 2002
Posts: 12,465
|
Joined: Apr 2002
Posts: 12,465 |
Hi Linda!
There is no doubt that your's is an inspiring story! I suppose not being desperate now is partly why I'm not as motivated, and the terrifying memories I have of less-than adequate amounts of nsaids controlling my pain quite frankly scare the heck out of me. But again, there is no doubt your words have an impact on me. Thank you, I really appreciate your input!
mig
mig
|
|
|
|
|
Joined: Mar 2002
Posts: 9,552 Likes: 10
|
|
Joined: Mar 2002
Posts: 9,552 Likes: 10 |
Hi Mig, Good to see you in the Diet forum  You are the first new person that I have seen post in here in quite a while... can not recall the last time I saw a new person posting that stated they started the diet. As Allan stated.... there is no hard fast rule that you must give up your medications when undertaking the diet. Sinta reminded me when I struggled with my weight (unlike others who can maintain a healthy weight), that the diet can also help by reducing the medications needed to get by. If you read some profiles of the posters in this forum, they do take meds..... I was always baffled how some individuals would list all these starchy foods they would eat in replying to my weight energy issues... of course I could not eat these starchy foods without going into flare since I was not on any meds (could not go on the meds I wanted due to liver and prefer to stay off NSAID's). Was not until I read their profiles or PM'ed them that I found out they were also taking meds. I do not think NSAID's make you stupid... but do wish I would have started out on the diet day 1 when I knew I had AS vs waiting 6-7 yrs. Believe I would be doing well and able to eat more variety of starch... do believe that NSAID's compromise the gut. My good news is that I have gained weight on Low Starch... hoping to do an apple fast next weekend. Believe that is what I will need to get GI back in shape that I can return to No Starch some day and be completely pain free again. Hoping to do a couple apple fasts. Best of luck with the road you choose MIG, life is meant to be enjoyed and only you know what makes yourself happy. Take care, Tim Pain is inevitable. Suffering is optional
AS may win some battles, but I will win the war.
KONK - Keep ON Kicking
|
|
|
|
|
Joined: Apr 2002
Posts: 12,465
|
|
Joined: Apr 2002
Posts: 12,465 |
Hey Tim! Good to see you too, and nice to hear you've gained some weight back while keeping to lsd! That IS very good news! That's a good idea to check profiles and get a better understanding of the diet and meds that people in here are balancing to achieve better pain management. I'll do that! I guess I keep thinking it's an all or nothing concept when I'm so many years into it now, and need to change that presumption around. Thanks for your kind words and suggestions Tim! You're right, life is meant to be enjoyed and whichever way we find suits us individually is the right way! Take good care! mig
mig
|
|
|
|
|
Joined: Mar 2003
Posts: 222
Second_Degree_AS_Kicker
|
|
Second_Degree_AS_Kicker
Joined: Mar 2003
Posts: 222 |
At the end of August I had gone on vacation. The diet was working fairly well. I was down to 2 alieves every 4 days. While on vacation I decided I'd just take one Celebrex(200mg) in the morning and again at night. The vacation went great. No problems with inflammation or pain. Sooo, 2 weeks later after I returned and started the daily routine again I just kept on taking 2 celebrex a day, thinking just until My system is clean and starchless again. I found I was outta practice for making meals and preping them to be ready to take to work. So I would stop 2 times a week and get a hamburger from Wendy's or Jack in the Box. That's 2 buns a week. Hmm, I can tolerate that pretty good. So I was having a couple of tablespoons of fruit spread with breakfast. 8 carbs 7 sugars. A bowl of Bryers ice cream every other day. 15 carbs 15 sugars, gotta be ok, right? And Once a week I was finding my old favorite Mexican food restraunt. That's it though. I was eating NSD as all other meals. Anyway, after 2 months I noticed that I was hunched over again. The top of my spine had curled in towards my neck and my head had pulled back to compensate. I was doing the trunk turn when looking any direction except forward. I hadn't noticed it creeping back in on me. No one said anything about my new adjusted posture. So I jamp back on the bandwagon the first week in November. Each week the difference was truely amazing. Now almost 3 weeks later I feel I'm back to where I was again. I did learn a valuable lesson from it. No amount of NSAIDS is going to stop my fusing if I eat starch. Not alot of starch, just starch period. It's amazing how much I had stooped in 2 months without realizing how badly bent I had become again.
I Went to the doctor earlier this week, first time since I had started the diet almost a year ago. He said, See I told you that enbrel would straighten you out. He was awe struck when I told him I was taking 2 alieves a week these days. I explained how I had broken the diet and was just now starting to get back to where I had been. He wrote down Elbringers name and this web sites address. Hi Doc, if your poking around in here. He said the enbrel was waiting if the diet ever got to be to much. He also said he agreed, he wouldn't want to put that junk in his body either. Junk=Celebrex and Enbrel. He said science still wasn't sure about the long term effects of TNF receptors and inhibators.
The diet is a tough regime to follow. It's benefits far out weigh it's sacrifices. It is a personal choice and a tough one at times. Once you get out of flare and remember how you use to be it is an easy choice. I'm only 42 so I'll be needing this vessel for at least another 40 years. Wow, my whole life time again without all those yummy snacks. Eh, oh well, I've learned from life that 5 minutes after enjoying a goodie it's gone anyway.
Hope this helps anyone thinking about it, but reluctant to take the plunge. The few here doing the diet wouldn't be doing it if it wasn't helping, helping alot.
Allan
|
|
|
|
|
Joined: Jul 2003
Posts: 112
Journeyman_AS_Kicker
|
|
OP
Journeyman_AS_Kicker
Joined: Jul 2003
Posts: 112 |
Hi Mig
You can see from this thread alone that the response to diet varies considerably. It may take you 6 months but I can notice the effect in less than a day! A 3 week test would be better than none.
Wally
|
|
|
|
|
Joined: Jul 2003
Posts: 112
Journeyman_AS_Kicker
|
|
OP
Journeyman_AS_Kicker
Joined: Jul 2003
Posts: 112 |
Hi Bilko and John
The evidence you presented in your last messages was new and unexpected and the plaintiff (affirmative) side has had to retire to consider its position. There was no urgency anyway - your comment that "...NSAIDs make you stupid..." seems to have overtaken the original debate.
The environment you describe at the time of Ebringer's studies would suggest he had a good chance of having something of a cross-section of AS sufferers. But you could hardly say it was a certainty. Perhaps even then there were some anti-diet people who refused to take part in the studies. Can you say positively there were not? The fact that subsequent studies have have not generally vidicated his results suggests a level of doubt.
I suggested a two group model originally but I accept that the model suggested by Zark of a range of reactions to diet is probably a better one and one probably all of us would accept. If you look at what has been written on this thread there is clearly a spectrum of responses to LSD/NSD within those interested in diet. One of the arguments used against the two-group model was that my own direct diet-flare reaction was not typical and some people took years before they noticed the connection. Even from what you have written of Ebringer's studies there seems to have been a range of responses there too. Is it unreasonable to suggest that at the extreme end of this range there are people who have little or no response to diet? If you were to plot severity of response against numbers you could draw a vertical line at the point where left of which the response was insignificant (dividing the 2 groups). The debate then hinges around at what point lies the division and what proportion lies to the left (you would say none).
I wonder at John's comment "..don't give up on us". Of that range of reactions described above I expect I am at the pro-diet extreme. Two years before I had any arthritic symptoms I used fasting to rid myself of back-pain which occurred on waking. Before I was diagnosed AS and before I knew what NSD stood for, I was speaking to my family doctor about symptoms caused by "energy foods". During my late teens, when I was skinny, fit and good at sport, I occasionally went on food binges after dinner (say 4 bowls of wheat cereal with milk and sugar). I would wake in the middle of the night in discomfort. I can't recall the exact symptoms because it was many years ago but I know they affected my skin and perhaps my flesh but not joints or movement. I learned that when I took a 2 mile run (yes, at 3AM) or the equivalent in exercises the symptoms would disappear.
So I am the last one to think about giving up on diet. This posting was really started on behalf of those who sincerely believe that diet doesn't help them. I am quite happy for you to prove to me they have no case whatsoever.
Thanks for going to the trouble to enlighten me about Ebringer and thanks John for the offer of information on his studies. I will certainly Email you shortly.
Wally
|
|
|
|
|
Joined: Sep 2001
Posts: 6,179 Likes: 23
AS Czar
|
|
AS Czar
Joined: Sep 2001
Posts: 6,179 Likes: 23 |
Hi, Wally: Certainly, if there is a normal distribution of responses, you could draw a line through the inflections and isolate the tails and you would have two 'apparently' different extremes. Ebringer was keen to this potential, and his testing included people who actually could not stick with the diet. In reply to:
The fact that subsequent studies have have not generally vidicated his results suggests a level of doubt.
But this is not a fact. Ebringer has tonnes of data but his detractors have none. Zip. They only protest because he did not do the vaunted double blind tests with pre-approved DOE. Perhaps on prison populations, where there was better control over foods, but by the very nature of this beast the double blind studies are almost too difficult to administer.
Naturally, Ebringer's clinic had several groupings of family members--especially fathers and sons--and one son in particular had been doing much better than his father on the LSD, and Ebringer got an unsolicited datum from this source: "Dad has a potato with dinner every night; says it is just not a meal without it." Of course he was LSD...EXCEPT. I no longer wonder at the two positive-slopers on the 9-month graph (in my letter)--they thought they were 'free' to consume starches; they still took part in the studies and the data is there, showing who was naughty and who was nice.
Many of his patients were in the bilko camp--not enthusiastic about the diet at first, but they proved to themselves it works. I don't really want to be cruel, but there were many who cheated and just plain did not want a dietary regimen to work. I know that there is yet another group who have sincerely attempted the diet but had no results and I am certain that if, like myself, they had been able to get a headstart by fasting, the apple regimen, or antibiotics, they would have had results. But they first must be honest about their efforts. One person tried to tell us the diet did not work, but when questioned under oath, he admitted that he just had to have his gourmet popcorn!!
The awful thing about the diet not producing miracle results after four hours is that people will fool themselves into thinking that they can give up on it altogether, but even Ebringer's mixed studies showed significant biological differences--even if the patient did not 'feel' any different. The information on diet in this context is vital because it is being ignored while it could be a valuable adjunct.
I think most of us would do better if we had an older family member who had been killed or damaged by AS--because the majority of sufferers are mild-waiting-to-become-severe at the hands of NSAIDs (wow, I didn't say doctors) or MTX or steroids and the damage creeps upon them with little cat feet and before they know it they have become squatty, calcified hunchbacks.
In reply to:
I wonder at John's comment "..don't give up on us".
No, I know that you would not give up on the diet as you are one of the lucky ones who could prove the connection...but our group gets a bit 'difficult' at times; the rest of kickas had to give us our own forum since we were causing too many arguments on that side in times past...only meant that I hope you will not be upset at our attitudes; we still need to learn from each other. The problem that you are working on is the most important one facing young and future ASers, and I do not have the intention of making light of it in any way, but the frustration wears upon us at times.
Best Regards,
John
A punk stopped me on the street and said: "You got a light Mack?"
|
|
|
|
|
Joined: Sep 2001
Posts: 2,364
Colonel_AS_Kicker
|
|
Colonel_AS_Kicker
Joined: Sep 2001
Posts: 2,364 |
Actually John, Ebringer did have two types of AS patients; those with active AS and inflammation whose blood samples had many uses, and those who had made the diet work and became of little scientific interest to him. He actually said to me once, after I was on the diet and my ESR was in single figures, 'now you are of no interest'! Maybe that is why he didn't get too heavy on the shirkers, the scientist was always content to wait and watch.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.
|
|
|
|
|
Joined: Sep 2001
Posts: 2,364
Colonel_AS_Kicker
|
|
Colonel_AS_Kicker
Joined: Sep 2001
Posts: 2,364 |
In reply to:
a study attempting to project how many Canadians with AS will likely be in need of one of the new biologics in future
but mig, this is the 'world view' of all rheumie AS experts; research is drugs trials, and they have little competence in the actual basic science. To track down all the research on klebsiella and AS you need to search away on PubMed; one paper I have in front of me is 'Antibodies to Klebsiella, Proteus, and HLA-B27 Peptides in Japanese Patients with Ankylosing Spondylitis and Rheumatoid Arthritis' published in The Journal of Rheumatology 1997;24:1. There are a number of such papers because it was essentiall to replicate the results for different racial groups.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.
|
|
|
|
|
Joined: Sep 2001
Posts: 2,364
Colonel_AS_Kicker
|
|
Colonel_AS_Kicker
Joined: Sep 2001
Posts: 2,364 |
In reply to:
The fact that subsequent studies have have not generally vindicated his results suggests a level of doubt.
Wally, the actual scientific lab stuff, the evidence based science, has been repeated by others; what has not been done by others is the controlled clinical trial, the evidence based medicine. The main funding body, the ARC, would not provide the money. Always beware the culture clash between science and medicine.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)Edited by bilko on 11/24/03 04:12 AM (server time).
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.
|
|
|
|
0 members (),
486
guests, and
354
robots. |
|
Key:
Admin,
Global Mod,
Mod
|
|
|
|
