Hi to everyone
I am a member of an AS rehabilitation group. I have spoken to many of the members and am puzzled by the different reactions to the subject of diet. Those interested are a minority, albeit often a very passionate one. Among the rest are those who have had AS for tens of years and are adamant that diet makes no difference to their symptoms. I am convinced that if their experience of reaction to diet was anything like mine they could not be unaware of its significance. I think some, at least, are just different.
If I am right, the AS grouping includes 2 sub-groups which have totally different reactions to diet (echidnas with other ant-eaters?). Clearly any study of reaction to diet which lumps the two together will produce no meaningful results. Such studies could then be used to dismiss diet as not significant in AS as the medical establishment does. For the same reason the statement on the AS Dietary Primer page on this website that "...a diet low in starch..... will likely become the preferential treatment (of AS) in the near future." is unlikely to prove true.
It is obvious that a similar study of Kickas members would produce a totally different outcome. As long as the 2 sub-groups described above are differentiated by symptoms only the medical establishment will not take diet seriously. On the other hand, if the diet sensitive AS sufferers are proven medically different in some way their separate study would then be justified.
What better study group would you find than Kickas members? If the administrators of this website, with their Email address resources, could be persuaded to conduct a comprehensive survey of AS members it might just be possible to identify such a medical difference.
I look forward to any comments.
Wally.
Hi Wally,
That is a very interesting theory you have and have wondered that myself. Things I was thinking might make a difference if the diet works or not are. The diet appears to work like magic for some and others it is less than amazing.
1. How long you have had untreated AS
2. What joints are affected?
3. What medication you have taken in the past and for how long?
4.What caused your AS to become active or more active. eg> surgery, hormones, trauma, gardia, etc.
5. How long you stayed on the diet and how strict you are with it.
6. Do you have food sensitivities that you are aware of?
I am sure there are many more ideas out there but I think you have asked a good question because maybe if the reasons could be identified it would help the people who the diet doesn't help.
There is no drug stronger than a good attitude.
Hi, Wally:
I have thought about this quite a bit, but have come to a different conclusion based upon my axiom that once in full flare nothing can make it worse. It takes ten days to clear the system of the offending IgA; most people's 'event horizon' is much closer. How many ten day periods does anyone accidentally go without starch? I had the advantage of having fasted for many days (up to 20) and it takes patience. Most of us are not experimental types and all the protesters have to do is ask their doctors about fasting--they will hear the lies they want to hear; the white stick brigade marches onward--destination doesn't matter. The individual might conclude, as an addendum to the Paleolithic diet, that people evolved feasting and then fasting; everything has a natural cycle.
In 20 years and over 450 patients Ebringer did not find one person with AS that was not caused by Klebsiella pneumoniae and those on his unsupervised "eat whatever you want but try and follow my London AS Diet" had a greater than 98% success rate (by "success" I mean that those with elevated ESR had significant lowered values after 9 months--the slope was in the right direction, but some were still too high to actually notice much improvement). Within the kickas community, many people who are B27 negative have found that reducing starches improves their condition and also people who's ESRs do not increase have noticed some improvement in symptoms on the LSD or NSD.
Those who do not respond well to total starch exclusion seem to have candidiasis as a severe complicating factor. There may be other factors, but that is probably the most common. Most cases of this are subclinical, especially in the context of suffering from AS as a primary condition.
A valid experimental design could not be achieved using a subjective poll; there are too many flaws.
What you have found are people who have already been messed up (by a combination of drugs and AS) and just feel that food is the last good sensation they get from life. Much of their pains are skeletal, and their desire not to change is the result of recalcitrant thinking and attitudes which caused some of the original problem in the first place. There are some people who will not allow themselves to be helped by diet and there is not a thing you can do to change that fact; it is Newton's Third Law (or karma) perfectly fulfilled by the First Law (inertia). Do I know this? I was there myself and recognize it better after many years of suffering.
I hope everyone gets better, but I understand that some prefer to wait for that magic pill that can reverse improper lifestyle choices. And I do hope that pill comes in time, while I know that everything comes with a trade-off whether there are obvious or intended consequences or not.
Best Regards,
John
A punk stopped me on the street and said: "You got a light Mack?"
Hi Wally,
I like the comprehensive survey idea. If kickas.org organizers could not conduct the survey, I can spend some time and organize a web site. As Deborah/John pointed out, we need to be very specific in the questions (to minimize any opinion/bias):
Just a thought for the format:
Most recent flare:
Lab Diagnosis: AS ( SI Fusion level, kp level,) IBD, gut inflammation, thyriod disorders, MS, ...
Duration: days ...
Pain locations: back neck shoulders hip knee foot ankle ...
Range of motion(?) Touch feet, Run, walk, neck movement, ....
ESR reading before: after: ...
CRP reading before: after: ..
TSR reading before: after:
Candida, yeast:
kp:
BP:
Cholestrol:
.....
. . .
Diet NSD LSD Atkins fasting xx days None
Medications: NSAIDS anti-TNF ....
Supplements: omega-3/6, ginger ....
Prior flare up:
Family history:
....
Rgds.,
Krishna
Since the medical establishment does not take me seriously I don't see why I should take them seriously on the topic of diet.
The other problem is that we basically have a very....obscure disease. Or rather, a complex of obscure diseases, some of which will respond better than others to diet. I think the diet won't work without antibiotic therapy. I think also there is more than one trigger for the disease.
Nobody's going to get any prestige from fixing us. And no drug company will ever profit.
Look at Type II Diabetes (adult onset) for comparison. Oh, the med-estab just falls all over themselves on that one. ERLWAE, as Rox says,
erlwae! erlwae! Eat Right Lose Weight And Exercise. What's the difference? There's enough of them seen that they wear their disease on their sleeves. And their thighs. They wouldn't give a rat's patootie if there were only a few hundred diabetics in this country. What if Mr. Average Physician only saw one type II diabetic a year and one year it's a chubby one and the next year not? Do you think he'd be able to figure out it was diet related?
Heck no!!!!
With my family history,they do test my blood sugar all the time, and they never find a thing wrong. Yet I have never been asked the $10 million dollar question...what are you doing that prevents you from developing the disease?
I looked at the risk factors when I was much younger and decided to go for the "healthier" lifestyle. Do I think every body can do this? No. You have to get pretty sick, and oddly enough, it helps to have bad role models sometimes. But some people mistake my lifestyle as a moral judgement of theirs, which I don't quite get, when they learn I do not drink alcohol or smoke. Oh geez, I can't do that crap with this body I'm stuck in.
If someone wants to compare family members, I have a smoking and drinking sister who is developing IBS but has not gone diabetic yet but has been warned by her doctor that she will eventually. She's also normal weight, like me. But I doubt that we are "sexy" enough for the medical establishment to be interested in as to why one of us has a piece of junk for a cervical spine and the other one has a cranky set of intestines. Ya know, gotta cure cancer and Sars and all that good stuff first.
I am just very happy I am sensitive enough to the sensations created by my body that I could tell there was a link between my food choices and my physical reactions before I found this site, I just could not make sense of it. I knew I reacted very poorly to sugar and fried foods. I suspect that most people on prescription strength quantities of NSAIDS are rendered oblivious to this. I also suspect there is a strong cultural bias against changing diet for a lot of people. I respect that. Your tastes for food are created at a very young age, in fact, they may be influenced by what your mother ate during pregnancy. The problem with doctors is that they are the survivors of the winnowing process that is our culture. Do you think there are many doctors that get sick on DOUGHNUTS? Have neck lock from a bag of french fries and a cheeseburger on a white bread bun? Since almost none of them have or ever will, why should any of them believe us? Doctors are, from their incredibly busy schedules, my guess, not exactly the poster children for healthy diets. They thrive in spite of them.
After all, they learn what they think from other doctors and the drug manufaturers, not us, and what they eat does not make them stiff or cause their eyes to inflame.
I have been pondering this quite a bit lately and sorry to ramble on for so long.
I recently received an e-mail from someone who had suggested to the administrator of the National Ankylosing Spondylytis Society (UK) web site that he should start a new forum for diet; the previously polite correspondence came to an abrupt halt, he received no reply! Not because the doctor who advises NASS is indifferent to diet, but because he seems to be a long time
opponent of the starch free diet. The controlled clinical trial will be over dead bodies . . .
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
PS - I must apologise, I have just re-read the posts and the administrator did reply. He said that other scientists had not been able to verify Ebringer's scientific results, which is a lie, they have been repeated in some 18 different countries. Edited by bilko on 11/20/03 03:48 AM (server time).
Any rhuematologist I ever mentioned the NSD say they do not promote excluding any one food group from your diet. To this date I have seen 4 rhuematologists. And I have excluded two food groups so I just keep my mouth shut, especially since I do not have the results to back up my claim. The only exception to this is my GP who encourages everyone, not just AS pts. to give up all starchy food. He is a step ahead them all. I still can't convince him of the kleib theory though.
There is no drug stronger than a good attitude.
I have to say I stick around this site cos there's some interesting info gets blown about.
I'm not suffering with AS but possibly do have IBS and some form of arthriticy condition..don't know. For me it's no longer useful to label it... I see it as me being out of balance and know there are several factors which have brought this about, the effect being an inability to absorb starch... and consequences if I do try to! So I'm just in search of a means to rebalance myself...and thereafter to see whether I can then absorb starch or not.
Point is, there are many variables that go to make up a healthy state and many that can precipate an out of balance one, and as John said, everything is cyclical...and takes time (and I'd add rhythmical). Just how any of us is supposed to hold all variables except one..the test variable, constant over a prolonged period...in order to deduce a 'scientific' connection between diet and AS or diet and illhealth generally, is well nigh impossible. We can't hold genetic susceptibility constant, or the myriad facets of lifestyle.
The shere volume of folk...ever increasing... who have linked diet to their condition, and specifically starch, to their illhealth... is 'proof' enough, imho. What the powers that be should be looking at is these numbers...and trying to deduce a common denominator... one which interferes with the life process as a verb, not the factors that seem to affect an almost arbitrary delineation of 'disease types' into specific boxes. This kind of classification is useful as a jumping off point in order to see the wood for the trees. But where is the coming together, the cross referencing...between specialists in different fields and those 'disease types' ? It wouldn't surprise me if that elusive common denominator turned out to be starch (amongst a few others).
What is it about starch... not just the chemical analysis of it virgo non-intacto, after it's been investigated in vitro... not just its normal break down processes when in contact with human digestive enzymes etc (there are 17 steps to this- so lots of possibilitites there for things to freeze up)... but the whole picture including bizarre ideas like it's resonant frequencies.
My twopence.
Sue
PS Just posted this and saw Deborah's message...Deborah...your GP advises ALL patients to give up starchy food?!...VERY interesting...why exactly? Is it his/her theory or where does he/she get the info? Would LOVE to know.
Edited by uksue on 11/19/03 08:53 AM (server time).
Hi Deborah
Thankyou for your suggestions for a survey questionnaire.
I'm glad that someone basically agrees with my suggestion. Along with Kickas members there are also people with AS who are not diet sensitive. There are those in both groups who pour scorn on the other.
On Monday night I had dinner with 8 other AS sufferers, all of whom had been diagnosed many years before me, and I was the only one who believed in diet as a factor in AS. I have not spent any time researching medical studies into the effect of diet on AS so I could not argue when I was berated with tales of such studies which could not establish any link. Of course if this is true it would fit the 'two sub-group' model which I suggested. Along with those hostile to my position were moderates who accepted that I was different to them but were convinced that diet was not a factor in their own AS.
My own condition varies from day to day depending on what I eat and the connection is fairly obvious. However I accept that for some the link may be more subtle.
Regardless of who is right, it still appears useful to have a survey.
Wally
Hi John
I see that you are firmly in the 'We are right and they are wrong.' camp'. I just find it difficult to accept that the only difference between the two groups is the stubborness of the majority to test the AS-diet link. Is Ebringer's study supporting the LSD the only one on the subject. Are there not studies failing to establish the link thus explaining the lack of acceptance by doctors? I intend to do some research on this subject when I get time.
I was not suggesting the survey be subjective only. Medical information such as blood group and results of any tests taken should be included. Ideally such a survey should be guided by a medical professional, perhaps a young one prepared to question the established dogma.
Wally
Hi Krishna
You're way ahead of me on the survey. I'm sure your suggestions would be helpful if it did occur.
You haven't commented on the 'Two sub-group' idea so I assume you don't think, as John does, that we are the enlightened ones and the others are suffering their AS in ignorance.
Wally
Hi Wind_rider
I can see this subject has stirred some strong emotions. You too obviously believe the doctors and the AS sufferers who ignore diet are simply wrong.
Of those with AS who do not believe the AS-diet link there are some I know who do not take NSAIDS. I am talking of people who are attending an AS exercise group so they accept the value of exercise but they are not just covering all their symptoms with NSAID.
You say "Do you think there are many doctors that get sick on DOUGHNUTS? Have neck lock from a bag of french fries and a cheeseburger on a white bread bun? ". These are the sort of symptoms I was referring to which would convince anyone who had them that diet was a factor. Obviously the non-diet people do not have them. Doesn't it make them different?
Wally
Dear Bilko
I can understand there are politics involved on this issue. When I have raised the diet-AS subject to medical professionals here I have received condescending platitudes. But the bias is because they think they are right and we are wrong. That should not prevent our side from gathering information to prove THEY are wrong.
Wally
Hi Sue
God protect us from all the aspartame-hating non-AS sufferers who write intellectual responses to posts on this forum!
You write "..to hold all variables except one..the test variable, constant over a prolonged period...in order to deduce a 'scientific' connection between diet and AS or diet and illhealth generally, is well nigh impossible". Isn't that what Ebringer has done in the case of AS? Of course not successfully isolating the single variable would be an explanation of studies which failed to prove the AS-diet link. There are of course people like myself who would swear the connection is so direct it is obvious (like John with his doughnuts, french fries and buns).
Wally
Hi Wally,
I want to explore the truth with out any bias. I understand bias is my worst enemy. I go to great people like John, Ted, rheumys, pubmed etc., to find clues to the puzzle.
If you want to see the progress in my search for the truth pls visit the following web site:
The Challenging PuzzleAlso I extensively document my own experiments/results. Pls see the thread krishna in this. forum.
Rgds.,
Krishna
Yes, my GP is into anti-aging and believes the theory that grains were only introduced in the last 500-1000 yrs and says we do NOT need grains or starchy food in our diet. He also says the food pyamid is all wrong and we should not be eating 8 - 12 servings of grain a day.He believes it causes inflamation and health problems in general. So I decided even if the diet doesn't give me the results it gives others I will stick to it anyway. He is definitely is not a conventional dr. I really like him. He was the only dr. who could figure out what was wrong with me so I will stick with him.
One thing I was thinking about lately was: I read somewhere that they have found dinosaur fossils that have been fused. So if a dinosaur spine is fused I doubt that it was because he ate too much pasta. So maybe whatever caused the dinosaur to fuse is causing the people who do not respond to the diet to fuse. As wind-rider says there may be different triggers to AS. We are not all alike. We all respond differently to medication, diets ect. Some can eat dairy without a problem others like myself notice an increase in pain after any dairy. Does anyone have a theory on why a dinosaur would fuse a million years ago before the introduction of grains and starch?
There is no drug stronger than a good attitude.
Hi Wally,
For myself the link is more subtle though I have a stonger response to dairy. Eating any dairy or too much sugar can cause problems. You know in the 7 months that I have been on the diet I have never really tested it to see if I would be worse off if I was eating starch. I am assuming that since I have never really gotten to a pain free point that I would be a lot worse off if I wasn't on the diet. Though my AS has a distinct pattern which is I have a good day then a bad day followed by a good day and then a bad day. It very rarely breaks that pattern. My bad days vary from just stiffness to extreme pain but I always know the next day will be a good day. The good days range from stiffness to pain free. I just wish I could get my good days to stick around a lot longer.
One other thing I wanted to mention is I tried the apple diet once and the followng month my ESR was down to 6, which is the lowest it has ever been. So that has me thinking as well, though it didn't help with the pain at all. Just can't bear the thought of another apple diet.
There is no drug stronger than a good attitude.
Deborah,
That's a good open minded GP, great. If you search for more info about starch and inflammation without the Kleb connection you can look at.
http:////www.stopinflammation.com/ About you're GP I don't agree with the time scale as grains were added some 8000 years ago to our diet in some cases, together with the agricultural revolution. Apparently when looking at archaelogical evidence AS but also arthritis and gout followed the pattern of agricultural revolution but there is not many research in this field.
About the dinosaurs: I think you mean the famous Ankylosaurus that had some natural fusion between the vertebrae and the hip joint I believe but that is a natural fusion that was meant to be
.
Gerard
"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-
Hi, Gerard:
"We" as humans have been eating starches for a very long time, but "We" as a Northern European group ate few starches until the introduction of potatoes and corn from the New World as major food sources less than 500 years ago. The B27 antigen was allowed to propagate in earlier, non-starch-centric cultures; those peoples, eating the most starches had already genetically culled out their B27s.
What is more, ultra-refined, micronized, and bleached flour has only been widely available since the 1880s; the starches previously consumed were very different. The volume of starchy products, with extrememly high shelf-life then increased dramatically.
For everyone, Dr. Mercola has written extensively on the elimination of
grains both on his site and also his
NoGrains book. Of course, most useful for us is Carol Sinclair's IBS (and AS) eating
NSDregimen.
Best Regards,
John
A punk stopped me on the street and said: "You got a light Mack?"
Wally,
But they aren't different.
Is it not an oxymoron to say that people with AS don't have symptoms of AS? "Obviously the non-diet people do not have them."
Well, what are they doing in that AS excercise group? Were they bored?
We see that on this websight all the time. Yikes. I mean, HOW DO THEY KNOW, THEY DON'T FOLLOW THE DIET ANYWAY?
What is the human body made of? And how does the body get its raw materials to metabolize into human form?
Why does veterinary science support the diet/disease connection? Have you ever fed a sick pet or horse a different diet and/or nutraceutical and seen stunning results? Was the pet or horse capable of faking the results?
The physicians don't experience the symptoms, therefore, they do not believe in the connection, either. Their fatal error is one of assumption that the arthritic body is like theirs. Most physicians' experiences with arthritis patients is going to be with either rheumatoid or osteo, probably neither of which responds to NSD/LSD the way AS does. For statistical purposes, we almost don't exist. We are a blip on the radar.
I don't think they are "simply" wrong. I think they are complicated wrong. I don't think I am completely correct either. Because from a scientific veiwpoint, I can only present a hypothesis (diet is a strong factor in disease progression) and then seek facts to prove or disprove it. Since we have no clones, we cannot test the diet theory to meet current standards of proof. I think the sticking point is that the powers that be want to prove the actual mechanism by which the diet works. I don't like this. At times total understanding does not make something work better. Look at how many thousands of people manage to tape television shows without understanding how the *&^%$-ing VCR really works. We at best, even with an excellent survey, are going to presenting mostly anecdotal evidence.
However, I am certainly not going to sit around waiting for the "proof" to be presented to me if my personal experiences seem to support the theory. I am thrilled that some of the ideas considered far out 10 years ago regarding diet and disease are slowly being proved more likely to be true.
Wally as Sue says, the variables are many and i think you are an exception - most people do not have the handle on their reactions like you and zark. I was lucky to recognize the Pizza - iritis connection for myself, but it still took me ages to focus on it as a healing exercise.
Unfortunately, for most people the drugs (NSAIDs) actually do work and symptoms are masked - they only see what they need to address.
Of those eight at the table, one says he has tried it (Jim) but i'm not sure with what conviction. There are so many obstacles and automatic disbelief that it takes self indications like yours and mine, blind faith or simply last chance motivation to actually give it a good tryout. Many people feel they are so disadvantaged by having the disease in the first place that they are simply not going to sacrifice any life style value at all.
Like this...(200kB) A student here struggling to finish his degree told me his health story "you probably don't know about it - it's called spondylitis" Surprised him a little. Anyway he is young, big, strong, poor and lives on pasta and rice dishes with a little bit of meat or veggies for flavour. He said he simply couldn't afford my diet of fish/chicken/fat with veggies/condiments only there to provide vitamins and enzymes, enzymes, variety and spice - no cheap energy of complex carbos.
Starch is cheap.
(and nasty)
I wouldn't like to say there's two groups and like John i'm sure most people will get some benefit from no starch, but what some don't find are all the other things that affect them and exactly what they are prepared to do or sacrifice to fix it.
As you know i'm keen on a survey for things objective like blood type, B27 status, B7 status would be handy too, family history, gastric history, infection history.
Oh and a top to bottom photo of the entire gastric tract......
Ted
Wally so long as you're gonna think in terms of us and them it doesn't help anyone.
Deborah,
I recall someone suggested that dinosaur wasn't on the stone age man diet!
This thread is a little confused because the suggestion that the diet should work for us follows from the scientifically / experimentally established knowledge that AS patients have elevated levels of klebs specific IgA, that starch foods are inadequately digested and that klebs just love it. The scientifically logical progression is to test this suggestion with a controlled dietary trial, but this the funding agencies have declined to do. The science is good so far, but until the trial, people can say, like kids, 'it ain't proven', 'there is no proof' etc. That is what the rheumies bleat.
So I think it wrong to suggest at this stage there are two distinct AS sub groups because then you are introducing another unknown etiology to confuse things when there are simpler explanations why diet doesn't work for a minority, such as GI tract damage, candidiasis and misdiagnosis. If the trial didn't give a positive result then OK, look elsewhere.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
John,
Sorry for the possible confusion. I more than completely agree with you that there is a recent rise in the consumption of refined grains in the Northern European group. I had in my mind the findings of the oldest AS fused spines in the early agricultural South American civilisations some 6000 years ago and the rise of agriculture that generally started some 8000 years ago. It would be interesting to investigate if there is a rise in AS (and arthritis and gout)in the Northern European group based on archeological finds in more recent times. The few articles I found seem to point in that direction. It should also be interesting if there is a rise in sufferers in recent Dx's but I'm afraid that the problems in diagnosis of AS are so big that no reasonable figure could be gotten out of that.
Gerard
"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-
Hi Wind_rider
I am sorry I didn't make myself clear. You described what seemed a direct cause and effect scenario. You took something - a bag of french fries - and then got neck-lock. The point I was attempting to make was that the french fries-flare connection, perhaps repeated many times over years for someone with a long AS history, would surely be obvious. There may be some Kickas members whose change in symptoms due to diet is subtle and perhaps not easy to identify. In my case it is so direct as to be obvious. I thought you were describing something similar but perhaps I was wrong.
I don't characterise those non-diet AS people as stubborn, unintelligent and ignorant. They have a sickness and would want to do anything which could relieve their symptoms just as would the diet-AS people. It is just they respect their doctors' opinions that diet is not a major factor and they see no evidence to contradict this. I believe if they had the same experience of taking certain food and getting a flare as I do they would soon see the link. My assumption was that the fact they saw no evidence to support diet as a factor was proof they didn't have a similar experience (I incorrectly used the word 'symptoms' here).
I also do not believe the medical profession is entirely disfunctional. We all know of historic examples when the current teaching on a certain illness was wrong but new research, new medical minds etc. eventually found the truth. I am sure there are young doctors and medical research scientists who would love to make their names by proving their profession was wrong by establishing the diet-AS link if they could.
I don't pretend any medical knowledge. My suggestion of 'two AS sub-groups' is based on judging the players involved and logic. It depends on -
- believing those (the majority) who see no diet link after many years with the disease. They're not all stupid.
- the assumption that if the link was as universal to all AS patients as many claim by now it would have been accepted by the medical profession.
The alternative argument - that the AS-diet link is common to all AS sufferers - also depends on assumptions.
- That the medical profession does not have the ability to recognize what is claimed is self-evident.
- That the non-diet AS people are not as clever in reading their bodies as Kickas members. They can live with the disease for decades and never notice the connection.
You may well be right. I just don't accept the certainty of your case. What if the vast majority of Kickas members turned out to have, say, blood type 'A'. Who knows what a survey would show. This website has brought together a unique group of people from all over the world because of their common disease and the belief in the AS-diet link. What else do they have in common?
Hi Ted
Please see what I wrote to Wind-rider. It's not that I don't believe your arguments. I just think there has to be some uncertainty.
On the one hand you have the medical profession and the majority of AS sufferers who think we are all a lot of nutters. On the other you have a minority who believe the medical profession can't accept the obvious and who also think the majority of people with AS are not as smart as they are. The 'Two AS sub-groups' suggestion is something of a middle road.
OK so the diet-AS connection is not as obvious in all AS sufferers as it is with me. You know there are those among the majority who now do not take NSAID and yet still don't see the diet-AS connection.I think it is a bit arrogant to assume they are all wrong. My way accepts both.
If I shouldn't generalize on my experience perhaps you shouldn't generalize on your poor student. Food is not the most expensive item in most peoples' budget. Paying more for food to improve your condition is something the majority would go for. I still think the main reason the non-diet people don't accept the AS-diet connection is because they believe their doctors and don't see any contrary evidence.
Wally
Hi Wally,
It's not just diet that can be a relevant-to-NSD and contentious-to-everything issue here Wally - try looking at exercise compliance - it doesn't always happen. Ditto smoking, which tons of research has shown to exacerbate chronic pain.
(Health) Locus of Control is a huge factor, and probably the only one that would *neatly* result in two distinct groups. (Helpful Hint: don't even go there - not unless you want your AS flamed big style
)
Compliance to the NSD would be a big issue in researching it, and something that difficult to factor in. Whilst I'd be happy for them to feed me through a nasogastric tube
maybe even parenterally, sod it, bung a catheter in as well
whatever it takes to get some credibility into the results....but at the end of the day the sad thing/fact of the matter is that even if research showed 100% unequivocal results for the diet and it was promoted Atkins-style with NSD products/shops a-plenty and with Tampax-style advertising of the fact, there would not be 100% uptake of it.
Well, I'm getting a bit distracted now by imagery of an NSD advert - thoughts of Bilko rollerblading in white pants, or would it be abseiling?? Sorry Bill - but at least I didn't say hotpants )Take care,
Jan
The first and best victory is to conquer self
— Plato
Hey, Ted:
Let's get your impoverished student fasting; it is the ultimate for both savings and saving from AS symptoms. Will send you new chapters on topic if you want. Before the NSD I got myself into remission quite regularly by fasting--shame on me for ever going to those doctors! Certainly, it takes more dedication than average but one cannot really afford, no matter how impecunious, to allow AS to cause the still more expensive problems later on--pay a pauper's pittance now or a regal ransom later. It would be instructive to meet us side-by-side (I use George and myself; I'm a hunchback with zero neck articulation after more than a decade more of starch ignorance than George, who is thankfully almost normal and plays golf nearly every day). It helps to have the comparative examples.
Great cartoon; I'll certainly eat pizza before going to the gallows
Best to You,
John
A punk stopped me on the street and said: "You got a light Mack?"
Hi Wally and all,
I thought it may be interesting for you to hear and possibly(?) even understand my rational as one of those non-diet AS sufferers of 22 yrs.
I am
not a dis-believer (as some may think), but to date I have not tried lsd/nsd. When I first came to KA and heard of this no-starch theory I admit to being initially pretty sceptical. The more I read the more I became curious as it seems there are a significant number of people who claim an obvious benefit. I figured
something must be happening or why would so many be sooo adamant!
At 21 y/o, I was certainly not educated enough to challenge the considered opinion of a medical specialist, but now at 41 am more that happy to quiz my Rheumy constantly and make him qualify his position and advice. I asked my doc if the bacteria klebsiella was the cause. He said doubtful,... but maybe. He said that 'most' of Rheumatology suspects that it will eventually come down to a bacterial cause but that for now, they do not know which one(s) are responsible. So I continued reading and learning.
Over the summer, John (Dragonslayer) was kind enough to send me more extensive reading material (thanks again John!) and again I took this to my Rheumy. He has gotten to the point where he expects packages of homework! We revisited the discussion on Dr. Ebringer and his papers and he said that his work could never be replicated... could never be proven to be true. He said there were 4-5 attempts in different countries, but none were able to replicate the results. He did make a point of saying that no-one has
disproven him either!
So here I am. I've been on nsaids for 22 yrs. I can make no connection from food to flare whatsoever, at least without adopting the diet. If I eat meat and veggies only one night, then meat, potatoes, bread and pie with ice-cream the next,... I'm in the same amount of pain either way. I may seem worse after a low starch day and feel better on a starch-filled day. I believe John's theory...
that once in full flare nothing can make it worse may exactly explain my experience. I can however notice a fairly immediate health benefit when excluding diary... which I occasionally do to alleviate sinus pain (especially when I have a cold virus). But this doesn't improve AS pains.
I am not a healthy eater but not a big junk-food junkie either. Most of my diet consists of starch. As I read about the foods you eat, I can't imagine there would be enough to sustain me. Unfortunately, I have never really liked veggies from a very young age and love cereals and breads. I don't eat very much pasta but love rice. Even the few veggies I do like tend to be the starchy ones (to my limited knowledge). I like potatoes, sweet potatoes, corn, snowpeas, squash, cauliflower, and I can eat a little bit of salad (lettuce, peppers, mushies) and force myself to eat a bit of broccoli occasionally. I don't like
green as a flavour. Fruits are limited to bananas, apples, plums, melons, pineapple, but I don't eat much citrus and dislike most berries (except blueberries). I like most meat, but really dislike nuts. So you can see it would be extremely challenging for me to eat enough calories.
The obstacle that prevents me from trying even a low starch diet is that I cannot afford to lose weight. I've considered trying an apple fast (when meds fail to cover bad pain) but fear I'd lose too much. I weigh only 112-115 lbs, and I'm 5' 5
1/2" tall (formerly 5' 8"). Please don't jump all over me and say I will not lose because I do lose weight and far too easily, plus I already feel my weight is on a rather low-unhealthy side. My doc used to ask me if I was anorexic at every appt for years until I explained that if it were true, then I would've disappeared by now.
The other big obstacle for me is that I
"...just feel that food is the last good sensation I get from life." Okay..not quite... that's a tad exaggerated even for me... but it's close enough.
Anyways, thanks for listening!
mig
Mig, if you have been on NSAID's for 22yrs (a) that's a kind of miracle in itself and (b) it WILL have a huge influence of your gut healing. Also, if I remember rightly, you are an user/advocate of smoking. Can't remember if you exercise much (as in daily??)
(Remember *all* too well your opinion of nurses working with SARS patients - some of whom are suing your government - and may I wish all the very best to them
- those that are still alive that is)
So no, you won't notice much difference very quickly if you change your present diet.
When I look back according to some ppl's calculations of success, I was well and truly made up when I got down to Co-Codamol TDS - I was honestly made up at this as I'd never managed it before and it was beyond my wildest dreams!!!
It went much further, and now I rarely have to reach for ANY analgesic....
But hey, how much is that to do with *expectations*?
I expected NOTHING and as far as I'm concerned I got EVERYTHING!!!
Forget diet Mig, if you want to see results quit the fags and get exercising in a pro-AS way as from TODAY - hey, you may even find the desire to alter your diet will follow quite naturally........
All the best to you,
Jan
The first and best victory is to conquer self
— Plato
>> "I suspect that most people on prescription strength quantities of NSAIDS are rendered oblivious to this."
That was something I wanted to add the minute I read this post :-) I really do believe that using NSAID's made me completely oblivious to the problem foods that were exacerbating my AS. But when my reactions to NSAID's became too severe, I had to stop taking them. Bloody agony ! And only then did I realise that fried foods, etc really did exacerbate my AS very significantly.
you're not rambling :-) your thoughts reflected mine so accurately !
z
"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy
>> "Obviously the non-diet people do not have them. Doesn't it make them different?"
How would they know? The majority of people wouldn't know how to manage going a day without starch. And I think I can say that - since I am in the same boat. In my opinion people are only slowly starting to question the food they put in their mouth more and more. But the majority of people still think their body is some kind of magical machine that can process any piece of junk from the supermarket.
I have often considered asking the kind of people that you were arguing with at your dinner : how long do they think a monkey or ape would last if it were eating a western diet? We humans must have very well evolved digestive system, since no other animal can remain healthy on the typical western diet. Well evolved perhaps, but not impervious !!
hope u don't mind my ramblings wally :-) and please dont think i'm attacking you ! My personal opinion is that rather than having 2 sub groups that it is really more of a broad spectrum of people who respond to diet with varying degrees. But even if it is more of a spectrum.. then it would still be easier to classify them in two group as you suggested.
peace,
z
"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy
>> Have you ever fed a sick pet or horse a different diet and/or nutraceutical and seen stunning results? Was the pet or horse capable of faking the results?
oops, looks like I am repeating what you said. "great minds think alike" and all that.... but how does that explain this???? does the saying hold true for fools like me :-)
z
"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy
>> It is just they respect their doctors' opinions that diet is not a major factor and they see no evidence to contradict this. I believe if they had the same experience of taking certain food and getting a flare as I do they would soon see the link.
I think maybe you are right there .. It took a long time for me to realise for myself that deep fried starches are hell. The onset of the pain is quite delayed, and it is extremely difficult to notice these latent reactions unless you decide to take the time to monitor your pain levels through the day, and after eating.
do you know how !@#$!@# long it took me to realise my iritis is caused by wheat, and in particular fried starches.. must have taken 7 years or so before I knew the connection. Talk about feeling like a dope ! And I am sure I NEVER would have looked for the connection if it wasn't for the work done by ppl like john and bilko.
Also, if I hadn't been "lucky" enough to be forced off NSAID's , then I wouldn't have noticed that fateful bag of chips that sent me ribs into spasms. And if that hadn't happened .. then maybe I might have been one of those ppl who are indignant at someone even mentioning that wacky idea of a food - disease link.
more of my darn ranting :-)
z
"So long and thanks for all the fish" - Hitch Hikers Guide To The Galaxy
Hi Sue
You wrote "Wally so long as you're gonna think in terms of us and them it doesn't help anyone."
Doesn't every debate have an 'us' and 'them' ? But only on the issue - there are no dark overtones. Your comment suggests you think what I have written is divisive. I humbly suggest that the division already exists. You only have to read what is written on this thread to come to that conclusion. Each thinks the other is misguided. By suggesting that both sides are right, but only for their group, I thought I was being inclusive.
It would be 'us' and 'them' for England and Australia before and during the Rugby World Cup final (coming up in less than a day as I write this). But it shouldn't prevent both sides having a drink together after the match. Go the Wallabies!
Wally
In reply to:
He said there were 4-5 attempts in different countries, but none were able to replicate the results. He did make a point of saying that no-one has disproven him either!
mig,
just how much do you think the average jobbing rheumie knows of the current science? If you look in the latest editions of the scientific tomes discussing the etiology of AS you find many references to Ebringer's published papers, and his theory is discussed as a serious contender. Because the results have now been replicated, in some 18 other countries.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Hi John
I have been giving some consideration to your points about Ebringer's studies -
"In 20 years and over 450 patients Ebringer did not find one person with AS that was not caused by Klebsiella pneumoniae and those on his unsupervised 'eat whatever you want but try and follow my London AS Diet' had a greater than 98% success rate ..."
This seems to present an open and shut case supporting your position that all AS sufferers can improve their condition by diet modification. Or does it?
I have tried to find details of Ebringer's studies and reviews of them on-line without success so what follows is just based on common sense.
For his studies Ebringer must have required committed volunteers. They would have to agree to real restrictions on their eating for what - weeks(?). I can imagine the response of some non-diet AS people I know who have lived with the disease for say 10 years to a request to take part in such a study. A suggestion they should give up bread, potato, ice-cream, beer etc. to help a researcher prove a theory they had already decided long ago was false. Answers along the lines of "You've got to be joking" or "Not #?!£&* likely!" wouldn't be far off.
But what about the recently diagnosed? They would have an open mind free of prejudice wouldn't they? Who is the professional closest to them on their disease, the one they would most likely seek for advice before going on a study related to AS? It is probably the one who diagnosed them - their radiologist. We all know what advice he would be likely to give. On the other hand there could be people like me who was asking questions about diet-symptom connections well before I was diagnosed. Of course I would jump at the opportunity to take part in such a survey. I think much the same could be said of many Kickas members.
So what am I saying? It seems to me Ebringer's study groups would most likely consist predominantly of people very like the Kickas group of members. This would then put in question Ebringer's conclusions applying to all AS sufferers (applying to the pro-diet AS group only?).
The above assumes attitudes of AS sufferers were the same at the time of Ebringer's studies as they are today, which may not necessarily be true.
Wally
Hi Mig
Someone from the other side! Are there others like you on Kickas as well?
I was very interested in your comments. You say your reticence to start on an LSD/NSD is due to a fear of losing more weight. I started experimenting with diet long before I knew about Kickas and LSD. By intermittently fasting I lost 20 kilos. Too easily, too fast I thought. I even started a thread on 'weight gain on LSD?'. I started consuming lots of cream and full-cream milk (I may be sensitive to dairy, but if so it is very subtle) and put back a little weight. However a naturopath persuaded me that I was not going to restore the muscle I lost and all I would put back would be fat, which was what I had observed.
So now I have given up on putting back muscle and have learned to accept my skinny body. I have a huge protein breakfast and lots of fish and salad during the rest of the day. By eating a lot of the foods within the diet my weight has stabilised and, although I seem to have much less muscle, I am almost as strong as before. I am just so determined to lick this disease. Lately the sacrifice has paid off and I'll never turn back now.
I like all the foods you list and miss them terribly but I now have an iron resolve and never (well rarely) touch anything outside my plan. I'm sorry, but I can't understand you not trying the diet in over 20 years. I accept what you say about food - "...just feel that food is the last good sensation I get from life." but why not give it a try, for a few weeks at least, eating more of the foods within the diet. You can then judge whether it is worth the sacrifice.
I see you waded into the debate about Ebringer. I have too, as you will see elsewhere, and I am expecting to be heaped with derision! I think some Kickas people expect that when he dies if he can't make to the right side he will at least be seated at the left side of God.
Wally
Hi Zark
That's a different idea - "more of a broad spectrum of people who respond to diet with varying degrees". Why not? But it still implies there are AS sufferers at the non-diet end who get no benefit to their condition by modifying diet. This is basically posing the same question as I do but in a modified way.
I see you are off NSAID completely. Congratulations. I'm working in that direction and am down to less than a quarter of my original prescription.
Wally
Hi Jan
I agree with your comments about compliance. This would help explain failed attempts to repeat Ebringer's results. It was only after I tightened up on the discipline with the diet that I really improved.
How can anyone know whether the diet would work for the non-diet AS people if they never try it? You will see elsewhere that I make the suggestion that Ebringer may never have included these people in his studies because they wouldn't have volunteered.
Wally
Wally,
you are quite wrong about the attitudes required of Ebringer's patients . . . first he was our regular rheumy (& GP if you like, you could ask him about anything, he always had time) so you trusted him, and he didn't say it was just a theory he was testing but that it was an effective therapy . . . but of course people slipped off the diet or never started it properly . . . took him several years to get me complying . . . when I walked in his room he would look in my eyes and ask 'how is the diet going?' . . . evasive answers, shifty eyes . . . he checked the symptoms, analysed the blood for kleb IgA . . . he knew damn well how the diet was going!
Initially, just over 20 years ago he did have us on a 3 month trial of starch free, but didn't explain why, we were volunteers at a research clinic, and just got on with it. And was I glad when the 3 months were up, couldn't face another bloody steak. Which was why when shortly after he said, right, this is how you must eat I thought '$&!^' and struggled on with the pills and shifted evasively when he asked 'how is the diet going?'!
And just to add on his interest in studying peoples faces for reactions - when Di married Charlie he bought a full length portrait of the couple, her in ball gown, tiara, diamonds, him in his admiral's uniform drowned in medals, and stuck it up in the alcove where you walked in his room. I stood dumfounded looking at the pair and asked 'what on earth have you got that up for?' He replied, 'I'm studying peoples reactions', with a perfectly inscrutable face.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)Edited by bilko on 11/21/03 09:03 AM (server time).
Hi Bilko
As an Ebringer patient you would be in the best position to comment and I have to accept it when you say that I am wrong. But could you explain why. There is nothing in what you wrote to suggest the group of volunteers included a cross-section of AS patients. I see the AS population TODAY as polarised with those not accepting the diet connection being unlikely to volunteer for such a study. Was it a difference in attitudes at that time?
Wally
Wally, it's all history now . . .
back in '77 a rheumie at another hospital asked if I would volunteer for a new AS research clinic, so I thought why not. Then we were all volunteers. But once the clinic was established people got referred there anyways, the hospital used it as a regular clinic, and Ebringer was seeing patients with other disorders as well, RA, osteo', doing second opinions etc etc. So the first of us were volunteers, then it would have been the whole spectrum you are concerned with, with all the attitudes. In all he had several hundred AS patients alone, don't know what the total was over the 25 years. So he saw more AS-ers than most rheumies anyway.
You also have to bear in mind that here in the UK with our national health system the way it is, you're lucky to see a proper rheumie in the first place and when you do you are expected to do as you are told. We can't pick and choose our docs very easily and if you don't like what you get then tough. Not that Ebringer was ever bossy, but he was persuasive and firm when necessary. If you were doubtful of anything he always gave an explanation based on science, it was never any of that rubbish you get from some 'I'm the expert, you do as I say'.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Hi, Wally:
As bilko stated, Ebringer's groups were not pre-filtered to select out the optimistic, placebo-prone population: He could actually measure what was going on and figure out how closely the diet was being followed.
I don't know where you have been looking on line, but we have published many of Ebringer's technical papers and one in particular contains the 9-month graph. I wrote a letter to another AS site which included this information (if you send email
aureq@inreach.com to me, I can send you a copy).
Selecting-out individuals for study as you have suggested would be a very good thing, and I would add that finding those who are very satisfied with their jobs and careers would also be important; some people would not really want to put forth the effort if they then had to avoid disability! But really, catching them young is the best thing because there is then no skeletal damage. We would then produce the
can I do it (eat starch) just until my first hip replacement...? group
[kidding!].
Educating people early enough in just how destructive and dangerous AS can become would be the most useful--if I had seen today's body coming I would have listened much closer to the raw food people and paid closer attention to Giraud Campbell's results (1978) and even many others--but I was ignorant of the starch connection until this board and Ebringer's proof and then support of much earlier work even including those subtle suggestions from Edgar Cayce!
Initially, I had the impression that the mechanism of AS was non-linear (a more complex--positive feedback--relationship between stimulus (starch) and response (flare)), however, going over Ebringer's data on the whole gamut of people attempting his London AS Diet at varying levels it is obvious that any level of abstinence is a good thing. WHETHER USEFUL levels of reduction is another matter. Ebringer's goal was to just reduce the level of damaging NSAIDs required and allow these drugs to work for longer periods before the need to switch to stronger meds. This was accomplished in
most people after one year ALMOST following his LSD; the benefit was proportional to the degree of abstinence. Subsequently, Carol Sinclair found her own way after (quite keenly) figuring out total elimination of starch. After many years now she remains damage-free and symptom-free and the picture of health so that you would question whether she was ever really sick--and question HOW MANY years, too!
Yes, it will work for
everyone with AS but it requires time and more patience than most patients have.
Ok...nobody else wanted to say it!--
NSAIDs make you stupid. There really are two groups--those who can continue to take NSAIDs without causing intestinal damage they notice and those who cannot continue to take these drugs for one reason or another. Certainly, NSAIDs wipe out our ability to notice whether any particular food is provocative or not. GIVE THEM UP FOR A DAY?!!! Are you
serious? Like that very fat woman with severe RA that my chiropractor suggested (after my great results) fasting to--"...you trying to KILL me?"
We used to die of 'consumption'...now we are dying of overconsumption.
You have been a good sport; it never hurts to talk these things over, don't give up on us--
John
A punk stopped me on the street and said: "You got a light Mack?"
Well John,... you can call me "
stupid" if you like, but somehow it fails to stop me from liking and respecting you. You've helped too many out of the goodness of your heart. Good try tho
. Do you feel better now?
If it is true that "NSAIDs wipe out our ability to notice whether any particular food is provocative or not" then how am I able to notice an immediate benefit to sinus pain when giving up diary? Is this because nsaids are not targeting sinus inflammation?
"GIVE THEM UP FOR A DAY?!!" Not intentionally. I last about 5 hrs max before caving in to pain. If only I were as tough as you!
Take care,
mig
Hi Bilko,
Tho I'm likely prejudiced in my opinion of my Rheumy, I find it doubtful that he could be classed as an "average jobbing" one. He is currently 'Chief of Staff' for a large T.O. area hospital, and even back in '83, was able to dx me on my 1st visit, prior to B27+ test result. When I asked why other Rheumies fail so miserably to make a proper dx for many, he was surprised saying it's really not hard. He says when someone relatively young presents with back/hip pain, AS should be one of the very 1st things considered. How many "average jobbing" Rheumies do you know of with that level of competence? He does keep up with current research and has in involved me in a study attempting to project how many Canadians with AS will likely be in need of one of the new biologics in future.
"If you look... you'll find ...the results have now been replicated, in some 18 other countries."
Have you read any of these 18 studies? These are what I am looking for. Would any/all of these be available over the internet for me to read? Any info would be very much appreciated!
Thanks for your input!
mig
Hi Wally! Hmmm, others like me? Maybe!
I've always guessed that fasting would probably work well for me. Over the decades I've noticed a tendancy to skip meals and just go without for spells, or eat only small portions. Sometimes I make myself eat just because I
think I should. I can't really explain it well. When I first heard that fasting suppresses the immune system I thought... ah-ha! Perhaps my subconcious had a clue all along? I've accepted my skinny self but am nervous of potential muscle loss as I am already physically weak. Last week I visited my s-i-l and she mentioned being on a new weight loss program at work... she says it's low starch. They're allowed to eat moderate amounts of starch all day, but none after 6 pm. So far (2 months in) she's lost 15 lbs.
It is not that I avoided "trying the diet in over 20 years"... just found out about it 1
1/2 yrs ago when first coming to KA. I'd easily give it a quick test for 2-3 wks but from all that I've read in here, it's unlikely I'd notice any benefit unless I went a full blown 6 month trial. By all accounts, I think I've had AS far too long and eaten far too many nsaids. I'm self-employed and must earn $$ to avoid losing my home and could not hope of working (or walking) 1 wk (let alone 6 months) without nsaids.
I'd never try talking someone out of trying this route, nor do I hesitate to suggest nsd/lsd to those who seek an alternative. I've never considered myself on a 'side' persay as much as reflected on my own situation and options.
Yep, I waded, but wet feet are no big deal right?
And I suspect He would be just as happy on the left side!
Thanks for your interest Wally!
mig
But, But.....
Who keeps saying you have to completely stop taking NSAIDS? Slowly reduce the amount of meds as you decrease the starch intake. I don't see where a few more months of NSAIDS is going to ruin your insides beyond any hope of redemption. If it is, then must of been to late anyways.
I'm doing marvelouslyrific on NSD. Perhaps 2 Alieves a week for minor nagging stiffness from a little fusing or is it the coffee or the avacado or the cheese.....
The diet is tough to follow. Wendy's doesn't serve NSD and it's on my way to work. Damn inconsiderate of them, aye?
Allan
Hi Allan!
Who keeps saying this? Well I can't really answer that one, as many seem to follow a myriad of approaches within this concept that it is hard to really know. From what I have gleaned the basic premise is to heal the gut and that nsaids effectively do the opposite,
(stupid being merely a side-effect) and wreak havoc. So after 20 yrs of nsaid use, if one was to go nsd yet continued eating nsaids... wouldn't that be like running on a treadmill to no-where?
Wendy's is no great loss, but the combo of fatigue and meal prep/cooking are a tough twosome for sure.
Glad to hear you're doing 'marvelouslyrific'!
mig
Hi, mig,
Can't resist some input here. I'm 52 y/o female and over a 20 year period took buckets and buckets of ibuprofen. I'm certain I had terrific gut damage if the gut pain and rectal bleeding were any indication!? I stumbled across this site and, desperate to regain my health, I discontinued NSAIDs cold turkey and initiated the 3-day apple regimen. Day 1 was rough, but by Day 3 my back pain and uveitis had improved by perhaps 90%. I'm now convinced NSAIDs and the "food pyramid" were killing me. The NSD restored my health. I would never consider giving it up.
LindaG
PS In addition, I've had no trouble maintaining a healthy weight on the NSD...
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
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
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
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
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
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
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?"
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)
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)
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).
I'm sorry but the whole concept of a linear relationship...give up starch and you'll get better, eat starch and you'll get sick.... (which sometimes seems to be taken as a given in threads) has to be viewed in the context of whole body intelligence. Who's to say that, like some 'strange attractor' the pattern set up within the body in terms of reactions to starch tends to linger a while after cessation of starch, or that starch molecules linger a while too.
The other factor besides cheating folk in studies (again an element that's very difficult to hold constant) is people's judgement of what contains starch and also hidden starches, e.g. in the morphing of cooked sugar. Starch is ubiquitous as we know.
How many of us have had someone say to them, 'oh but surely a little can't do any harm?'... and one grits one's teeth and grins. But how many also say that to themselves?
Another factor is unknown reactions between the body's attempts to protect itself from starch and perhaps counteractive measures to protect against an individual's other imbalances..peculiar to that person.
This is why I feel one needs to be extremely patient and give oneself at least a year before judging. In the interim we have to rely heavily on anecdotal evidence and in the final analysis no one will give up anything until they are ready.
but
Bilko,
Another question to get things clear, as Ebringer's diet trials and using NSAID's seems to be the other topic of this thread. What was Ebringer's strategy in using NSAID's? Did he let the people do the diet and continue medication as usual (NSAID and sulfasalazine) and then when ESR figures dropped build off the NSAID's. I'd reckon that this was the way he did it as in his publications he states that some where able to stop medication altogether and others still needed an occasional NSAID every now and then to cope with the irreversible damage the disease already had caused.
In this forum however it is sometimes advocated to stop NSAID together with doing the diet as the NSAID's cause intestinal damage and because they mask the effects of bad food. Though the logic of that is clear enough it is also clear that there are more risks attached to this method. Anyway I just wanted to know how things were done in the old days.
Gerard
"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-
Gerard,
medication was continued when the diet was started. In any case it would have been quite wrong for him to attempt to stop a patient's medication when there was inflammation and/or pain.
The only drug he stopped me using was sulphasalazine-EN; he said it was because it had lowered my ESR to the 20's and done its job. Maybe he was mindful of side effects? He never told me to stop NSAIDs, he would just ask if, and how often, I was using them. Of course I never had problems with the bute or indocid, so I don't know what approach he took with those who did. The TNF-a blockers were not available then, though my guess is he would have used them if the sulfa didn't work.
My brother, also his patient, only used the sulfa, probably because he hasn't got my iron guts.
I should also add that Ebringer was very insistent on physiotherapy and organised AS physio classes down in the gym and pool. When the hospital had budgetary problems and stopped them he was pretty furious; the only time I ever saw him express his anger, and complain our government could afford £500,000 cruise missiles to fire in the Baltic but wouldn't provide the money for basic health care.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Having an ESR in the single figures does not correlate with pain and inflamation. I feel too much emphasis is put on the ESR by dr.'s as to what is going on with the disease. My sed rate this month was 6. This does not in any way correlate to the pain I have had this month. Though I will say when it was at 20 my pain levels were higher. But what I am trying to say is that just because your sed rate is normal or in single digit numbers doesn't mean you do not experience regular AS pain.
There is no drug stronger than a good attitude.
Oh Debs,
first thing he enquired after was pain levels. You had to put a mark on a line running from no to max pain. Then he wanted to hear all the problems which he noted down . . . I think he knew what he was doing.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Deb,
You certainly are right. You remind me of Jayne who is mostly posting in the main forum. She is on the new TNF blockers (after the diet didn't seem to work). Now the TNF blocker also don't seem to work for the pain but they did some kind of bone scan revealing that there wasn't any remarkable inflammation going on. Probably the damage being done in the past is to big to notice changes in pain. Anyway I'd rather be in pain with SED 6 then 60 (unless it always been 6 of course) but I agree it is very frustrating to say the least.
Gerard
"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-
Hi John
What has been missing from this discussion is the other side - the AS patients and doctors who do not believe diet is a factor in AS. You and Bilko have presented lots of information to justify your argument and what is needed now is documents supporting the non-diet position. By default I have been carrying their flag but I'm hardly motivated to go searching for studies and reviews which oppose Ebringer's conclusions.
I was interested to learn that "..the rest of kickas had to give us our own forum since we were causing too many arguments...". It must be very frustrating to feel you have a better approach to AS but those with the power can ignore you from the heights of their ivory towers. I braced myself for a harsh reaction when I started this posting because I knew how sensitive the subject was and I was relieved at the response I received. I imagine you, Bilko and others have been studying and arguing about this subject for years and I was expecting some "You don't know what you're talking about!" reactions which would have been understandable. There was one angry respondent but otherwise everyone has been patient and polite.
Now to change tack..
It has not been mentioned before this but one of the reasons I raised the two group suggestion was because I wondered whether medical history leading to diagnosis could lead to different classifications of patients. Just as I differ in reaction to diet to other AS sufferers to whom I speak I also differ in how I came to be diagnosed. Is there a connection there? (if Ebringer has covered this in the documents you sent me please enlighten me as I haven't read them yet).
When I arrived to see the rheumatologist who diagnosed me he had the referral letter from the family doctor with results of tests and Xrays. I formed the impression he had already made up his mind on his diagnosis. The letter said that I had a long history of disk problems in the back; my tests had shown B27+, ESR 21 (marginal it seems); my body had stiffened up recently; the X-rays showed calcification in the spine. This seemed to have beeen sufficient information to diagnose AS. Yet I feel I could have been tested and seen by him years earlier when a disk had slipped out and the evidence may well have been the same (not sure about the ESR). But then I had not experienced any arthritic symptoms or flares and I had no sensitivity to food at all (except on those specific occasions of which I spoke earlier). These began only this year after I stopped a 3 month course of NSAIDs and led me to the conclusion that my arthritis (mainly restricted movement in the wrists, fingers, shoulders and neck but little pain) was NSAID caused 'leaky gut'.
If I had been diagnosed at the earlier time I would have sworn that diet made no difference to my condition. You comment that "...I know that there is yet another group who have sincerely attempted the diet but had no results...". I would have been one of those. Now I am totally different. Isn't it possible there are people diagnosed with AS who could be divided in the same way?
Wally
Wally - this is from another forum I visit...
Fast Food Thanksgiving
We were going to go out for Thanksgiving dinner this year, just the two of us.
I decided to buy a cooked smoked turkey at the grocery store for "leftovers" and meals after Thanksgiving. How often to fully cooked turkeys go on sale, I thought, so why not?
Then we decided. Let's just stay in this year for a change, we couldn't make up our minds where to go and haven't made any reservations yet.
So we got some instant stuffing (just add butter), some canned yams, a ready made pecan pie, some fresh frozen green beans, canned cranberry sauce, gravy from a jar. The only thing I'm going to put any effort in making fresh mashed potatoes because I loathe instant.
I didn't realize that grocery stores have made it so easy for us working people to have a nice dinner. I haven't cooked at home in 20 years. (*Darned instant mashed potato*!!! Pffftt!!!!)
But heck.....
20 years????!!!! OMG - I can almost
*hear* her left ventricle slamming SHUT.......
So....Wally......how much do you think THAT person would welcome taking on more dietary responsibility???
I *suspect* it is me you refer to as having written the angry post (Oy!!!!...Quiet in the cheapseats!!!
)
And if it is, well, it is with more reason than you probably suspect.....
And whilst I would say that it is very *generous* of you to feel the way you do (about the diet) I can't help thinking that you're maybe being somewhat naive here??
This is certainly not the best of times for me to be posting, but I *cannot* sit back and read BS - and it's entirely THAT feeling which has kept me on this site....even when I had VERY good reasons to leave.....
Never make assumptions Wally
Take care,
Jan
The first and best victory is to conquer self
— Plato
Hi Jan
No you weren't the person I was referring too as a bit angry. Besides, I think people have a right to get angry over things important to them and I wouldn't hold that against anyone. I know also that some people are in pain and allowances have to be made.
I really don't understand your message. I looked back to what I had said in reply to you and there didn't seem to be anything provocative there.
You seem to suggest I was patronising to people on the diet when anyone who reads this thread could see I was a staunch advocate. I have just been questioning whether those who do not believe in it also have a case.
Are you gettng me mixed up with someone else? If not could you please make it clear what it is I have said which has upset you.
Wally
HERE HERE, Wally!
I have enjoyed reading these posts. I'd like to respond by saying I totally agree with your feelings of two groups or possibly some sort of spectrum.
Look, all of us here most likely don't have the exact same form of disease and exact same cause. I feel it's likely that we all won't have the same exact effects from diet. THEN you have folks who have had AS for years, and may not be able to differentiate between pain from mechanical damage and inflammation.
Now what I mean about perhaps not sharing the exact same disease.
There's different types of spondylitis, including AS, undifferentiated, psoratic, etc .
There's B27 positive and negative AS'ers.
Then I wonder about those like myself who have NEVER had elevations in CRP or ESR, even during times of big flares and with or without Vioxx. Obviously for me these tests mean nothing and I'm sure I'm not alone. Am I then in yet another group... those that are not "inflammation responders"?
So choosing subjects for such a study would, I think, be tricky. Perhaps sufferers of like symptoms/tests etc could be grouped together.
I would love to see such a study, as I really think that diet plays a role SOMEHOW, and that Erbringer was at least at the tip of an iceberg with his work. So many have benefited. But yet there are questions. Hopefully, someone can come along and continue so that questions can be answered.
(BTW, I do take Vioxx (not stupid yet, but do try to skip every other or every third dose, but lately can't), and believe me, I FEEL EVERY BITE OF WHEAT, when I slip up)
Thank you for your initial post and responses, I have enjoyed the discourse.
"Starting today, your kindness will lead you to success" from a recent fortune cookie
In reply to:
I wondered whether medical history leading to diagnosis could lead to different classifications of patients.
Ebringer's classification into two groups is really very simple; he would listen to the patient's medical history to form an opinion, then if AS was suspected test the level of klebs specific antibodies. If you had inflammation and pain but no elevated klebs IgA then it wasn't AS. Otherwise it was. Often it is extremely difficult for a clinician to diagnose with the usual criteria, and some of the people in the group who do not respond to diet will have the wrong diagnosis.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Hi Bilko... I
promise I'm not trying to frustrate you, but would really like to hear more on your point of view.
In reply to:
If you had inflammation and pain but no elevated klebs IgA then it wasn't AS. Otherwise it was.
What if Ebringer's premise of a single trigger/causal mechanism fails to envelope an different group of real AS cases? What if there IS another group (as Wally theorises) who are non-responsive to diet, and test negative for elevated kleb IgA, but DO in fact have actual AS? It would certainly explain why diet worked in all of Ebringer's patients, and would also explain why some don't discern a benefit.
This jumped to mind, since most clinicians don't use this specific test in determining an AS dx. Certainly their failure to test for this could simply reflect their failure to adopt his theory as a whole, but this in itself doesn't speak to or rule out a 2nd causal possibility... true? So I guess my real question is... would Dr. Ebringer have ruled out someone with SI fusion, iritis, and all the classic symptoms due to a neg IgA, since it didn't fit the theory? Is the idea of 2 different initiating events resulting in the same affliction.. beyond the realm of possibility?
Your insight is appreciated!
mig
Hi Bilko
Thanks for keeping us advised on where Ebringer and his opposition stand on all this.
I think you would accept that all the terms used in this thread, such as AS sufferers etc. referred to people who had been diagnosed with AS. It is this population to which the debate has been addressed. The admission keys to this fraternity are held by the patient's local rheumatologist. Whether the patient has AS as precisely defined by Ebringer as you describe or whether it was diagnosed by a doctor who doesn't know a Klebsiella from a tarantella.
You said "...it is extremely difficult for a clinician to diagnose with the usual criteria, and some of the people in the group who do not respond to diet will have the wrong diagnosis." This seems to be an acceptance that there are people in the group 'who do not respond to diet' which is all I have been trying to say.
You have accepted that there are 2 groups. One which responds to diet and one which doesn't.
Wally
Hi Dwarfield
I'm glad I'm not the only one who has found this thread interesting and educational. It's also been fun.
Your message fits nicely with what Bilko has written. If there are some in the AS group who have been incorrectly diagnosed with AS (as defined by Ebringer) they may well have one of the closely related diseases you refer to. Since the rheumatologist is only going to prescribe NSAID and exercise, whether it be for AS, RA or one of the other arthritic diseases, he probably thinks the difference is only academic anyway.
I too am working on reducing my NSAID dosage and should now be less than quarter as stupid.
Wally
There are so many possible causes of AS that I wonder if the diet will help all that try it. Giardia, chlamydia, candida ( not a cause but can mimic), Lyme disease are just a few that I can think of. I believe there was a mother whose son had a giardia infection and a course of flagyl cleared up his fairly long standing AS. So I am thinking maybe people who do not respond to the diet should get checked for all these possible triggers? Honestly I do not know anymore. I believe that is wonderful that the diet works for some and if it worked for me I would be shouting it from the roof tops. This has been a very interesting debate and I always love to learn more about what helps anyone.
There is no drug stronger than a good attitude.
Hi, mig:
This is one of the groups that Ebringer was specifically looking for, but in over 20 years he never found one person who had classic symptoms without the greatly increased IgA-Kp. Even HLA-B27 negatives who have things like Crohn's Disease and other neggies with mild symptoms had this test elevated during the active phases of their illness. His original premise was that Kp were a cause of AS, but that changed to the cause after years of study. He still points out that, perhaps somewhere at some time some disease identical to AS could occur in a person that is not caused by Kp; the 'vegetarian tiger' dilemma (since you have not looked at EVERY tiger, you cannot really make the statement that none are vegetarian).
The point is that the actual chances of me being the lucky ASer who does not respond to diet because of a different disease mechanism are insignificant--if even in the realm of numerically real possibilities; the odds are worse than most lotteries. Those who do not respond to diet will certainly respond to diet plus an antibiotic protocol, if properly managed (after eliminating the candidiasis potential).
I know that the diet cannot take down an established massive colonization by Kp; such an 'infection' is totally independent of gut activity and elimination must then be very aggressive. The RBF is stuck on mycobacteria and minocycline, so most of their doctors will not prescribe the most effective antibiotics against AS; there are few options besides self-treatment in such advanced conditions. We might be able to make up a prediction table, based upon the number or severity of sequelae, but things like GERD and asthma are certain indicators that diet alone will either take very long or require some antibiotic therapy in conjunction.
--And the point of that seeming digression is that there certainly does appear to be two distinct groups, but there is at least one alternative explanation that does not require a different disease mechanism.
The discussion is not so far out; even some of the researchers are so confused that they are looking for different genetic components to modulate the B27 to explain very minor differences in disease progression--anything for a grant. AS will be the most studied disease in history--in every direction but the right one because the right answer will put a hold on future grant monies...besides, NIH still stands for Not Invented Here.
Best to You,
John
A punk stopped me on the street and said: "You got a light Mack?"
Hi Deborah!
Perhaps she (or someone?) will pop in and correct me if I'm wrong, but I believe that if the Giardia parasite is responsible then the dx changes from AS to reactive arthritis (ReA). The symptoms can be practically identical to AS except don't improve with nsaids. I agree it makes sense to rule out other conditions or potentially complicating factors before making conclusions regarding nsd.
Take care,
mig
Hi John!
Thank-you for your comprehensive response. The 'vegetarian tiger' concept is a creative way to further your point, tho my concern was adequately addressed by the fact he had actively and yet unsuccessfully sought to find such cases. I wouldn't have required those kind of odds to accept the premise, but enjoyed reading it none-the-less.
If I'm following your thought process correctly is it your opinion that the distinction lies between degrees of minor
or massive colonization? If so, does it follow that
anyone with longstanding AS would be in the second group? Could one have managed to avoid a massive infection (if left unchecked) for 20+ yrs? Which makes me curious to hear if most individual experiences in this forum fit to this pattern, or is this too difficult to discern with differing starch restriction levels and food-allergy complications etc.?
Re:--anything for a grant. Well, just not quite so cynical here,... yet.
Thanks again, and my best to you too!
mig
Hi, mig:
In reply to:
...is it your opinion that the distinction lies between degrees of minor or massive colonization? If so, does it follow that anyone with longstanding AS would be in the second group? Could one have managed to avoid a massive infection (if left unchecked) for 20+ yrs?
Yes-to the major extent there are great differences in diet efficacy, no, and then yes: We each have unique intestinal histories, and the severity and extent of initial and subsequent lesions (which can be caused by giardiasis, shigellosis, Hepatitis B vaccination, Ross River virus, yersiniosis, Delhi belly--basically anything which compromises the tract might initiate AS), drugs like NSAIDs, antibiotics, and subsequent candida overgrowth--to name just a few risk factors aside from dietary and other lifestyle choices.
It is certainly possible to never get such a massive infection, and it might be the rule and not the exception. With the prevalence of candidiasis (which constantly produces LGS), I strongly believe that this is another major factor in those who do not respond to diet and this group really should not take antibiotics without some serious consultation. Several people I have been in touch with must do continual cycles of anti-candida (includes probiotics) and antibiotics.
Good Health to You,
John
A punk stopped me on the street and said: "You got a light Mack?"
I agree with a lot of this and as i've discussed with Wally privately, the spectrum with complexity is the way i go - not a linear approach, one that branches off in a few different directions.
The point we make about NSAIDs and pain masking other causes/sources (allergies/sensitivites) is enmeshed with the state of the gut, the history of the gut and it matters not if the major trauma was a fish bone, severe bout of E.coli. or intestine shortening surgery. Kleb is an invasive opportunist - only a vigilant and daily regime against Kp will be effective for those with major infestations or major damage which allows colonizing opportunities.
What will be missing from Ebringer's work, by control sample default, is a high IgA against Kp for people who do NOT have AS, but have suffered gut trauma. Presumably they will be 99% B27- well maybe just 99% free of certain symptoms as the cartilage problem can still exist...
AND to these Kp infected ones without AS, add 20% or so of all pneumonia sufferers !!
Maybe B27 negs do have more cartilage problems - where's that survey/data ?
But maybe they just jhave a bad back for a few days and then get better...
Glad i'm just a simple RS then AS, B27 who reacted well to NSD - makes it all so simple when i can blame Kp.
60 hours of apples later and i'm
ing more than ever, neck free too.
Ted
In reply to:
What if Ebringer's premise of a single trigger/causal mechanism fails to envelope an different group of real AS cases?
No frustration here mig, you put wally's original question succintly. John has answered it; the studies show a correlation between elevated IgA-Kp and AS, but not between other bacteria and AS. Primary cause or epiphenomenen, the link exists, the researchers can still try to argue which. You can of course argue an alternative theory, but what is it? For a scientific theory to be of any use whatever it must state an argument and make predictions which are testable, otherwise it is no science.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Hey, Ted:
It's difficult to catch Ebringer running out of studies; this very one was performed upon chronic NSAID-takers (who certainly have a level of LGS)--those with RA and were B27 certified negative. He found zero elevated IgA-Kp levels, but he had to differentiate between the groups, and in doing thus found that the vast majority of those with active RA have elevated IgG specific to Proteus mirabilis. He believes this germ, responsible for about 15% of UTIs, is the cause of RA; same molecular mimicry mechanism.
I had so many more questions for Ebringer than I was able to ask, but these were some of the most important that could not be avoided, especially since he included the data prominently in several of his papers on the topic.
Keep trying!
Best Regards,
John
A punk stopped me on the street and said: "You got a light Mack?"
Hi Bilko
All this microbiology has my head spinning. I would like to make one simple point which seems to have been missed in the discussion.
You said "Ebringer's classification into two groups is really very simple; he would listen to the patient's medical history to form an opinion, then if AS was suspected test the level of klebs specific antibodies. If you had inflammation and pain but no elevated klebs IgA then it wasn't AS. Otherwise it was. "
I don't know what it is like in the UK but here in Australia I am not sure if the local labs are even capable of making these tests. I think I could say with confidence that none of the people diagnosed with AS that I see would have had such a test. So Ebringer's study groups and the AS patients I see are likely to be significantly different. Surely it becomes questionable, perhaps even inappropriate, to use Ebringer's studies to make general comments about present AS sufferers as has been done throughout this discussion.
Wally
Hi Wally,
I didn't really understand my message either - not once I'd deleted and retracted, and filtered what I *really* wanted to say.....
As I said, it really wasn't the best of times for me to be posting, but knowing that my year is about to come to a Grand Spectacular Finale (I live in hope) and knowing what can happens in this place when Starch Wars kick in...I thought I was probably *safer* whipping out the old light sabre now rather than later when things might really get messy...???
Thing is I can't help thinking that if you'd posted this in the main forum this thread would have taken on a whole new angle and velocity - and probably mainly because there are (far too) many ppl here who are anti-diet and would welcome your comments with rather than objectivity - "proof" that they were right by their personal experiment of trying life without starch for one meal, half a meal, no sodding meal but hey, anything's better than admitting to wanting the easy way out....
I'd say go search, but there's a lot of threads been deleted along the way. Even the old forum has gone AWOL - and what a veritable treat that was as to how the bunnies treated the dieters *shakes head*
I mentioned Locus of Control, and saying how those with an external one can and will project their distaste as to someone else's personal responsibility and accountability for their health is an ummm, understatement. And round here, abscence of a Pollyanna Syndrome can end up being a disadvantage...whatever you post can end up getting flamed or ignored, and somehow the NSD can seem to cop the blame (but as I said - projection)
It annoys me that I had to find this site to find out about this diet.
And it annoys me more that some users of this site will all too readily diss the whole thing, when in fact they have NOT given it a fair trial, whatever their words might be.
If there truly are two groups, no-one will know unless they really give this thing their very best, and sadly that isn't always going to happen. And even in the event that they did and it was proven beyond all doubt that some ppl were non-responders - what % would you estimate that would be??
My sense of sadness is in knowing (from the outtakes) that for some ppl, this kind of discussion is like a *valid* reason why they don't even have to try - and that, believe it or not, breaks my heart...
I know what this diet did for me Wally, and at one point, in a parallel universe, was going to ensure that this was the best year of my life. Well, as they say, sh*t happens, and it has instead turned out to be my very worst one - to date! And how sodding happy am I that I'm not having to live through it with the pain, fatigue and inability to see the future that I had once accepted as being my normal??!
Hmmm...you're probably going to be understanding this post even less than the other one at this rate....rant over.
Take care,
Jan
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Thanks John, i will keep trying...
I suppose UTI is the same as TPI in Oz!
I've seen those other bacteria associations - any for polychondritis? - attacks soft cartilage of nose and ear lobe, morbid outlook.
I know i'd need to look further, but i've had pneumonia too, so if it was Kp (who knows) i've no idea how long my immune system would be activated or how it would effect IgA for other pneumonics.
It does appear that gut damage is necessary and that's IgA territory, but there may be no damage to the bronchial/lung tissue with pneumonia so no surface expression.
The NSAID damaged gut and lack of IgA against Kp is quite interesting as to me it infers that there is no such thing as a colony of Kp living somewhere inside the body (the joints, sinus, tear duct or some badly reticulated part) otherwise wouldn't there be an immune reaction to it. If we have a damaged gut anything could get inside, therefore, why not colonies of Proteus, Yersinium etc. etc. as well - with associated antibodies. There's a trigger somewhere. And if it's not always B27, then what is it i wonder? Cartilage, entheses, muscle ... I did a search once for "B7 B27" and was amazed at the lengths some researchers went to IGNORE Kp.
I agree, basic Kp cause, but with so many questions. Too many possibilities. Amazing variety of individual reaction.
Ted
In reply to:
Surely it becomes questionable, perhaps even inappropriate, to use Ebringer's studies to make general comments about present AS sufferers as has been done throughout this discussion.
No, no, no Wally; on these discussion forums we get all the subjective guff, but if we are going to learn owt we must value science which makes headway. It is true the IgA-Kp test is not standard path lab for AS, but this kind of science works by studying samples. You are unnecessarily confusing things; for instance, Jayne, on the main forum, recentley reported that the diet, then humira, didn't seem to help. Then a whole body scan revealed no AS inflammation, her pain appears to be the legacy of all the mechanical damage. Isn't this explanation so much simpler? To say Jayne is in a seperate sub group is true but trite.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Hi Jan,
Just to let you know the Old Forums will *fingers crossed* be found again soon. Jo's unearthed (un-techno-babbled) our best lead yet, so we just need to get our hosts to listen to our argument and we're in business again.
It's bizzare, but it's the same throughout life: Even in techno-land everyone talks twice as much as they listen. I was always taught I had two ears but only one mouth, and I should use them in that proportion. Maybe the difficulty is two ears but ten fingers?? Heh, could I be onto something? Nah, I still only type with two of 'em ;) Hey ho.
I don't know if I ever said thanks for your kindness during my difficult times earlier this year? Thank you! Next week we're all going to LOROS to add my dad's light to their (all too enlightened) light-for-life Christmas tree.
Hoping you're still 100% pain free and that your year perks up as it draws to a close,
Loz
"Loving what is right is different from hating what is wrong and feeling right about it." - Roy Masters
Wally,
I have a counter question for you. Why should you believe people who are sure that diet doesn't work for them while you have no indication that they even tried the diet for any period of time or have notion how the diet should be done? And if they tried how many had one starch free meal and notice no difference in pain and draw conclusions? Personally I opt for a different approach. I only believe people who say this if they visited this forum and if diet doesn't work for them if they have searched for the reason why it doesn't work. For instance by posting here what they have eaten and have counselled here what could be going wrong. If they should do that they could belong to the second subgroup you started this thread with but I'm pretty sure this group would be dramatically smaller then the amount of so called non responders in your exercise group.
Anyway it is more logical to look in that direction then to assume that there is a difference between the AS patients in England from twenty years ago and the patients in Australia nowadays. Geez, your head must be spinning indeed
.
Gerard
"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-
Hi Gerard,
A twist on your question is why does the diet work so well for me (elimination of all AS symptoms), but I can not sustain the energy on the diet? What makes me different from the rest of the dieters (the strict No Starch individuals). I can handle Low Starch with no issue from an energy standpoint, but the AS does bounce back into my life.
The only period I was able to be strict NSD was Jan 02 to May 02. The only thing I can think that was different is that I had performed the 3 day apple diets on 3 occasions prior to this (Nov/Dec/Jan). Other than that, reviewing my history I do not see any differences.
Currently doing my first apple fast (first day) now that I did put some weight on. Will see if I can make the 3 days, but may cut to 2 days.
Take care,
Tim
Pain is inevitable. Suffering is optional
And how come I still have a size 14 derriere?!!!!!!
Hi Tim,
You seem to be different in this respect then the most of the dieters here. Some even gain weigth though I myself can't imagine how they do that. I tend to answer to your question that you might ask to much of yourself and from the diet. There are probably people here who might think otherwise but in the light of your recent history the LSD and a little inflammation (and medication) as a result of it might be a better idea then going too strict and ending up without energy and in troubles. Even better is some alternation I think. The apple diet is very good as a sort of reset for your metabolism and intestines. And between those periods you could allow yourself some cooked rice or oats to resolve the energy problems (so you can keep moving and exercising) and to gain your weight back.
When I look at myself I also do it that way although I always seem to have some level of background inflammation even after three days of apple diet. The diet is working however but I keep needing some NSAID's though greatly reduced. Maybe others have other tips.
Coming back on my previous post for Wally I'd like to add that though I believe that most people who say diet doesn't work for them haven't seriously tried this doesn't mean that there could not be some kind of division in AS'ers and their response to diet.
Gerard
"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-
Hi Bilko
At least you have agreed that "It is true the IgA-Kp test is not standard path lab for AS".
I'm sorry but I just cannot understand how you can dismiss so easily the fact that Ebringer has used a narrower definition of AS than the average rheumatologist. From the evidence you have given, he required a crucial antibody test whilst the rheumatologist doesn't. This is not to doubt the value of Ebringer's work or the fact that the diet will work with so many people regardless of the criteria of diagnosis. The point I am making is that there must be many people currently diagnosed with AS who do not meet his definition of AS. The conclusions he made would not necessarily apply to them.
Perhaps you are happier to say that those who were not tested for antibodies, and in fact do not have them (we have to assume there are some), do not have AS as you said in a previous post. Then, among those diagnosed with AS, there are a number of people who do not have AS (according to you and Ebringer). Then it could be possible that these people do not respond to diet.
Of course there are people diagnosed with AS who have not succeeded with the diet because they didn't follow it rigorously enough or didn't apply it properly or for all the other reasons given on this thread. But I believe there just may be some who actually don't respond to diet. You can say they don't have AS if you like.
But if there are people diagnosed with AS who don't fit Ebringer's definition of AS you can't quote his conclusions as applying to them. That is what I said in my previous post and I am sticking to it.
Come on someone, anyone who is reading this, please back me up. This is not "subjective guff" or "trite" or "unnecessarily confusing". It is just basic logic.
Wally
Hi John
Elsewhere here you wrote "In 20 years and over 450 patients Ebringer did not find one person with AS that was not caused by Klebsiella pneumoniae ...."
Bilko said "Ebringer's classification into two groups is really very simple; he would listen to the patient's medical history to form an opinion, then if AS was suspected test the level of klebs specific antibodies. If you had inflammation and pain but no elevated klebs IgA then it wasn't AS. Otherwise it was. "
Taken together isn't that like proving the connection between HIV and AIDS by first deciding that anyone who didn't have HIV didn't have AIDS?
It seems that Ebringer had a narrower definition of AS than your neighbourhood rheumatologist. So shouldn't (that most impressive document of yours) the AS Dietary Primer be hedged with a statement to that effect? That this (Ebringer's conclusions on the connection between AS and diet) may not necessarily apply to you unless you have above the following figure in the following test ...?
Wally
Hi Gerard
Of course it is a subjective decision to decide whether people who claim the diet doesn't work for them have actually tried it properly. Like you, I don't know for certain if there are any. I just think there might be.
All the arguments supporting LSD or NSD are based on the research of Alan Ebringer and he has been central to much of the discussion on this topic. Basically I have been told everyone with AS should respond to diet because his conclusions said so. But now I have learned that his definition of AS and that of the rheumatologist who diagnosed you and me are different. So his studies do not cover the complete range of people diagnosed as AS today. That is why it was necessary to establish the "difference between the AS patients in England from twenty years ago and the patients in Australia nowadays".
I didn't bring up the subject of Ebringer and his research. I have merely responded to it. You may think it is a bit irrelevant but that view is not shared by the 'regulars' who have written on this thread.
Wally
Hi Jan
You were right. I didn't understand the last post either. I have not been on Kickas very long but I have gathered that it is rather tribal. You must be from that other Main Forum tribe. You can see the problem in communicating. It's the difference in dialect. I have visited your forum to try to pick up some of the language but it didn't work. I did learn, though, that Cheryl's mum is home and Jo's just had a birthday so the visit wasn't wasted.
You write about this forum that "..there are (far too) many ppl here who are anti-diet ..". A forum for a diet being frequented by those who are anti-diet. It just goes to show how contrary people are. There's a terrific site I know for baroque music, if it weren't for all those rap fans who get on it.
As I observe this thread (I'm getting to use these words like 'post' and 'thread' like a real veteran now), apart from those many anti-diet people you refer to, the contributors fall into the following categories -
- NSD / LSD enthusiasts
- Those who haven't had success with the diet but are still trying
- Some who haven't tried it but think it seems like a good idea and would try it if only ....
- Members of the other tribe whom no-one can understand.
- People of eminence (there are lots of these), who speak loftily and with great authority on such arcane subjects as yersiniosis, musins, glycoproteins, giardiasis, shigellosis (and they're just the easy ones), which people from your tribe wouldn't understand. They cruise the seas of the forum searching out the poor lost souls like me, struggling with our affliction and floundering in our ignorance and gently guide us to sheltered waters, from the starch-ridden darkness to NSD light, and patiently lead us to the path of truth and er.. joy and happiness.
On a serious note, I have no idea what proportion of non-responders there would be. But I think it is just as arrogant to dismiss everyone who says they have tried diet and it doesn't work as it is for the medical profession to dismiss LSD/NSD enthusiasts like you and me.
I'm glad to hear you have improved so much on the diet and hope you are not too offended at my attempts at humour.
Wally
Hi, Wally--
Just jumping in with two issues:
In reply to:
All the arguments supporting LSD or NSD are based on the research of Alan Ebringer and he has been central to much of the discussion on this topic. Basically I have been told everyone with AS should respond to diet because his conclusions said so. But now I have learned that his definition of AS and that of the rheumatologist who diagnosed you and me are different
Ebringer is only the guy who figured out the mechanism and got us our sample populations with solid scientific research: There are no less than SIX total anti-starch sources starting with Dr Wm Hay, Edgar Cayce (words to the wise; for what that is worth), Dr. Giraud Campbell, Carol Sinclair (did not know she had AS for at least eight years after publishing her IBS book), Ebringer, and recently a doctor in Pittsburgh who has a different mechanism for AS, but understands the wheat starch connection as characterized by Dr. Fine. Two more anti-starch sources are the 'raw foodies'(raw) and Dr. Mercola, but neither describe mechanisms specific to AS.
Ebringer's AS net is actually cast a bit wider than the average rheumatologist because he does not like the attitude of waiting for SI damage to confirm a diagnosis; his criteria centered on the B27 antigen and whether he could get the patient to verbalize that they had to 'roll out of bed.'. With 450 core patients and total 600 seen during the operation of his clinic, he had a pretty decent sample size. Applied to the overall world population of AS sufferers, it provides a pretty impressive LCL (Lower Confidence Level) by medical sampling standards.
"...there's no use crying, and saying 'puss! puss! puss!" ../..and, if called by a panther, I sthill won't anther.
Regards,
John
Wally, I don't have a problem with your theory, but my theory that it's a bunch of people who actually have rheumatoid (or God knows what else autoimmune problems or infections) gumming up the diet results is not going to go down well either. You also are ignoring the fact that it seems the harder this disease is treated conventionally with traditional anti-arthritis drugs, the more disasterous the results are. How can this be? How do you KNOW the drugs such as NSAIDS, are not negating the diet results? That and the fact that so many people REALLY don't want the disease to be diet related because they just cannot accept the difficulty of change to follow it make it too easy and tempting to indulge in a little rationalization to justify the seeming inconsistancy.
I predict in about 5 to 10 years from now researchers will be blaming autism on diet. You recall 10 years ago it was fashionable to blame it on the mother being neurotic and unable to bond with the child....
I had to throw that in because somewhere I read a big longwinded blah blah blah thing where some EXPERT said people who attempt to alter the course of diseases by following very strict diets just do so because that way they get a feeling of control on a helpless situation, and likened it to having, in its extreme, obsessive compulsive disorder. Oh thanks a lot.
It's still chicken-and/or-egg, they who do not diet say it does not work. Or does it not work in they who won't eat it? Okay, if you DON'T eat it, it won't WORK!! Bravo! But would ya then be so kind as to hazard me a guess as to just WHAT is causing your inflamation? Surely if one's gut is inflamed it would not be that far fetched to hypothesize that it could be the food in the gut? Yet there are people across the river who are vehemently, violently opposed to this theory! Why are they so upset about this? I cannot just go making up stories to make them feel better about themselves, can I?
Obviously the entire disease/diet mechanism is not understood if you have patients with the disease who are still HLA-B27 negative, or have seemingly perfectly normal bloodwork yet perfectly ghastly spines. There is an exception for every criteria.
Tim i'd advocate Gerard's approach of apple fast then a period with some rice as a sound one too.
As i've said, it'd be interesting to know what your body does with nutrients, fats and bile....
Another thing, starch is multiple glucose. I wonder how you do on elementary sugars - glucose of course, but mannose and glucosamine are used directly by cells, they do not need a glucose stage! There is some evidence that fucose may be similar so the only difficulty is suitable sources and quantities.
I found this recent apple fast extremely enervating - got back into running the next day after an eight week break and established that all my residual pain is osteo damage. Hope it does similar for you.
Ted
Hey Bilko - bit of skeet for you fella - apparently said doctor will be retiring shortly.
Obviously how this will affect NASS remains to be seen, he might even keep his hand in there? So to speak! *cue funny picture*
Take care,
Jan
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Hi Loz,
It's weird to think that the old KA site is out there floating in cyberland, currently innacessible?? Weirder still to think that it can be made obtainable again...??!!!
Hey, whilst I'm certainly not a techno-babe, I'm not a puter-doofus either - and I'm more than willing to accept that those here who do know about these things, will make them happen if they have the knowledge and determination to do so.
Do I have to read everything under the sun, the sky, anything out there in the known universe to know this and to trust this process?? No - of course I don't!!! And an even bigger NO to the pseudo-troll who wants the thorough investigation of the
UNknown universe before this whole process can even proceed....*sigh*
Hey Loz - one interesting feature I noted on the old site (and a nursing forum I frequent) is being able to set up a poll. Think it would be interesting one for this post:
(a) who got the NSD analogy?
(b) or did you just hear a great big *whoosing* noise??
The two NSD sub-groups HAHAHAHA!!!!! (Ok, now I know it's time to stop...I know my SOH is on the darker side of black and not everybody gets it...well, apart from other nurses and medical staff)
Hey, think you might be onto a winner about the ten fingers, one mouth thing....or is that just wishful thinking??
I know I lost it earlier this year, because it was so unlike "me" - normally I am Ms. Cool, Calm and Collected and I am frequently described as being "serene", but that has been far from what I have felt in the last year. At one point (my bad point on here) I frequently felt as if my head was going to implode.
As I said, this has been my worst year by far, and even if it had been my very best, my BS filter would still be finely attuned, and instead it has been
MEGA-attuned - well, for the most part! (I actually wish I'd taken more notice of it at times!)
Knowing that I'm just about to embrace (haha) the very worst of my issues concerns me as whilst I know that it's kind of inevitable I will feel increased stress, what I really dread is feeling that *imploding* feeling again. Both issues have the potential to drag on, which doesn't help, but knowing one will be easily more rapid than the other does. *Phew!*
Ahhh, Loz....just want to get feeling like ME again.......*sigh*
And hopefully earnest posters (supreme 'giving the benefit of the doubt' here) like Wally won't set my usually-sensitive-anyway-BS filter off, and get me wound "up a height" as they say in some places in the NE... and of course, I am better prepared this time, notjust for my reactions, but my reasons for them (which is the important bit)
Thank you for wishing me well and for your kind words, Loz.
Hope your visit to Loros goes well, I'm sure you'll get a lot of comfort from it.
Today has been the first day of the "Light for Life" of the Hospice here, I'd wanted to go to the ceremony but ended up stuck at work. Although I was upset at first, I knew that being there wasn't what mattered, it was what was in my heart and soul that counted...like for most of life's *events*...
Take care Loz,
Jan
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
So what is a TPI in Oz? Failing to see the UTI connection at the moment???????
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Hi again Wally...
Well, I tried to edit my post to make the thread/forum/site thing a bit easier for you - but it was too late, unable to edit...*tsk* *tsk*!!! However, please feel free to PM me if you would like me to decipher the words "post", "forum", "thread" and "site" - I would be happy to do so, even in words of one syllable should it be necessary!!!!!!
I am glad that you said "
attempts at humour" as this made much RICHER use of the word "attempts" than I had previously been accustomed to.....???
Wally, there's just something there about you being Mr Pedantic (possible even
Mr Completely Pedantic) which is belied by you (a) thinking I'm a bunny (yeah - like loads of evidence about that
) and then (b) telling me that dribble like "which people from your tribe wouldn't understand." (referring to the *science* part of the L'Oreal argument, which you notably drooled/sucked up over...) which as well as insulting my intelligence, just makes me think that you are a troll, a pseudo-troll, or at very best, displaying troll-tendencies?? - Wally. Or at least a wally, Wally.
If you're just having a laugh then bring it on....I'm WELL up for it honey...
If not, well - hey! ....are you having fun yet???
Don't go choking on the shampoo Wally - now that would be really numb....
Take care,
Jan
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Good one wally, the old ways are the best. Call it the ague and bring on the leeches & hey presto - the Bath Disability Index! - the pinnacle of knowledge!
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
I feel like a voyeur here. I've been reading this whole exchange...no comment.
I agree with one of Mig's observations- food is just about one of the only real pleasures I get now.
Now substance for a sec... The reason I see that we who use medications do them on a trial and error basis
is simply that the meds work or not differently in different people...I think there are probably at least as many
subgroups as there are variations in diagnoses. I also believe that the diet program may work also differently
in individual cases.
Personally, confronted with a weight problem, I did the stillman diet for ten months: meat, fish, boiled eggs,
cottage cheese, salt and pepper, and ketchup...10 glasses of water a day...NOTHING ELSE> that's a no
starch diet if there ever was one. Well my back and hips were worse the whole time; my experience with
stillman leads me to conclude the LSD/NSD would probably not improve my life; and, with my now history of
ulcer from NSAIDS the greens and salads stuff give me the willies...a vegetarian tiger ?
aloha Ben
Dear Jan
Nope. Couldn't understand a word of this post either, which may have been just as well.
Along with John's 'NSAIDS makes you stupid' can be added 'NSD destroys your sense of humour' (we're all learning so much aren't we). I take the occasional bowl of cereal to nullify the effect and lighten me up a little. In a severe case like yours, well, that may not be quite enough. In fact I'd recommend nothing but starch for a month.
I'll have to be careful what I say to people from your tribe. By the time I've offended everyone on this forum I may have to seek asylum over there.
Hugs and kisses
Wally
Hugs and kisses on the NSD forum!!!
Come on Jan!
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
That is NOT a properly balanced NSD, AlohaBen. It lacks fruits,vegetables, fiber, and good oils. It also did not eliminate casein and lactose on a trial basis. And the ketchup may have contained Modified Food Starch and corn byproducts, as I am absolutely sure some of the meat and fish products did UNLESS your were really scrutinizing the labels.
I was trying to find something non sugary to snack on this weekend at a gas station and had to eliminate all the packages of nuts( warning,"roasted in peanut oils in a facility that processes soy", while I can eat soy, these words means I will get sicker than a dog on the nuts because the peanut oil is so contaminated with God knows what) and almost all the meat jerky products contained gluten, pork, and assorted weirdo grain byproducts. This is typical.
The other point is that non-dieters cannot understand is that when they eliminate the things that they cannot digest, they regain the ability to eat things that previously caused problems, such as greens and salads.
Sorry about the weight problem, but that is also proof that one) you are stressing your joints further, and two) something is amiss in how your body transfers food products into flesh and bone.
Once again, another example of non-compliance being passed off as a failure.
Did you notice he forgot to mention Rohypnol??!!!
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Hi Windrider,
I don't know whether you checked Ben's profile, but I noticed he is a chef by occupation. In general, I don't think of chef's as those most prone to popping into the nearby gas station for jerky or eating pre-packaged meat and fish products as staples whilst attempting to lose weight. Although I agree his diet didn't sound balanced, the lack of fruit and veggie content does not equate to hidden starches (to me at least). Perhaps he will jump back in and provide us more details, otherwise your conclusions seem a bit of a leap.
A chef with a weight issue doesn't lead me to conclude.. 'something is amiss in how his body transfers food into flesh' ...when a simpler answer might suffice?
mig
that's an enormous presumption...arrogant......I'm right, you're non compliant.
I had no desire to attempt a "no starch" experience. I was trying to loose weight with a fashionable,
now somewhat discredited diet program. NOT one thing was fried...there was no "meat product"
contaminated with modified starch...Broiled, boiled or baked only...not a lick of processed foods.
In no way was this ,even then, seen as a balanced diet.stillman did not allow fruits, salads or vegies. NONE !
I did loose about a hundred and forty pounds...taking a great deal of wear and tear off the joints;
I only offered an anecdotal observation that a restricted food selection with very, very, very little
starch ( corn syrup in the ketchup) had NO effect at all at lessening inflammation for ME over a protracted
period of time. vegetarian tiger.
we're all different, some differenter than others.
alohaben
Hi Ben,
It may have been the cottage cheese that was the culprit. For myself, dairy causes pain that the starch causes in others. The only dairy I do now is goat cheese. So just a thought.
There is no drug stronger than a good attitude.
thanks, dear.
I actually became a chef later in life...I was a revolutionary political agitator at that time.
by the way, my old friend abbie hoffman was a great chef too.
My weight held steady between 180-200 lbs for years...till i had the little tummy problem and
dropped to 142lbs in April 2002. Until august of this year I just cringed in pain at the thought
of vinegar in or on anything...don't mention grapefruit.
I eat moderately well...the only salt in anything i eat, I put there. I like dairy- butter and cream.
I was a pastry chef for a while...so the dreaded bread, pies and cakes are on my agenda, except
that i had so little energy I haven't done much lately. Haven't made a bread in two years.
Generally cooks/chefs eat what they serve...if you work a lot, you eat more, and the weight
goes up a bit; in lean times you eat less and weight goes down a bit. Haven't worked, however,
since august 2002; and I'm very pleased I've been cooking for myself again lately. Use mostly
organic produce and meats if available; and except for desserts and coffee, rarely touch sugar.
mai e 'ai.
aloha Ben
Bilko,
Don't tell me that you don't like hugs and kisses
Cheers,
Sinta
Ben:
I still have my copy of
Steal This BookYou are still not confirmed to be in the vegetarian tiger group, btw...you are just one of those who happen not to respond easily to diet, even if you were mostly
actually NSD. There are myriad reasons for not responding
besides a different AS mechanism. I do not respond so well to diet alone; I still require antibiotics--and the combination works great!
Best to You,
John
A punk stopped me on the street and said: "You got a light Mack?"
But Ben, strictly no fruit and veg for ten months? I thought the Stillman diet was for short periods only; what damage might you have done yourself?
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
John,
I knew you didn't respond to the LSD (hence taking Ebringer's recommended low starch diet to the extremes of no starch at all) and I don't doubt you've mentioned this before and been open and honest about it all along, but for me that's the first time I've heard you mention that you don't even respond to eliminating
all starch without concurrent antibiotic therapy!
I'd always imagined you dealt with AS without being reliant on meds/drugs at all, so I just felt the need to type a response.
For the sake of peace I must mention that I'm not intending to be funny or ironic and certainly not clever, it's just shattered my illusions and I'm somewhat taken aback. I do of course appreciate that from one perspective ( in one dimension? ;) concurrent antibiotics support the klebsiella pneumoniae theory and that nothing is as simplistic as we'd all prefer. I just never would have guessed. I realise also that I haven't actually made a point
Loz
"Loving what is right is different from hating what is wrong and feeling right about it." - Roy Masters
Loz,
John has explained on many occasions that the NSAIDs wrought such irreparable damage to his gut that he believes this allowed klebsiella to form sub-epithelial colonies, finding alternative food sources and producing a greater immunological response.
One might say that such patients are indeed a different sub-group in that medicine itself has made therapy so difficult; but that would be rather trivial.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
I do remember John theorising on NSAID damage, but I'm not familiar with the concept of 'sub-epithelial colonies' - what are they?
I didn't realise either that klebsiella can feed on other food sources as well as starch. What are those sources and shouldn't they be excluded too?
Loz
"Loving what is right is different from hating what is wrong and feeling right about it." - Roy Masters
The epithelium referred to is the membrane lining the gut. Normally components of the immune system are secreted across which detect bacteria and cause the immune system to respond. Antibodies are secreted. But NSAIDs can damage this membrane, enabling klebs to spread beneath. Klebs can be cultured on other food sources (including meat apparently) but starch is the food type generally not efficiently digested in the small intestine and the klebs thrive on it where it enters the small bowel (lactose is also a problem with some). Dieting can reduce their numbers found in faeces by a factor of fifty, and the consequent lessening of the immune response gives remission in those with intact guts.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
OK yes, I knew about the stomach lining, just didn't recognise the medical term for it. I had no idea that meat can feed klebs, though. Where does that put the hunter-gatherer diet theory? Is John vegetarian because of the meat feeding the klebs or just by choice of conscience? (I realise you may not wish to speak for another's conscience.)
Loz
"Loving what is right is different from hating what is wrong and feeling right about it." - Roy Masters
Hi John
You and Bilko have shown a meaningful silence to the last posts I addressed to you. You quoted "...there's no use crying, and saying 'puss! puss! puss!" ../..and, if called by a panther, I sthill won't anther”. The interpretation has to be that you are unable to anther the arguments presented there.
Where does that leave us? Well first the things it doesn't do. It does not denigrate in any way the work of Ebringer which you and others have praised here and elsewhere. It does not reduce the value of the NSD / LSD diet and its contribution to the better health of AS sufferers. It does not even prove that there are some diagnosed with AS who do not benefit from the diet.
What it does show is that you cannot use Ebringer’s studies to scientifically prove there are no diet-insensitive AS sufferers, which is what you and others attempted to do earlier in this thread. Since he filtered out those AS volunteers without high levels of Klebsiella antibodies, which is not done by rheumatologists, he left open the possibility that there are among those diagnosed with AS today some who do not meet this criteria. According to Bilko, Ebringer decided they did not have AS. But since the Klebsiella antibody test is not generally done these people have been currently diagnosed with AS and we don’t know who they are.
It could be these people, the ones who Ebringer would say did not have AS, who genuinely do not respond to diet. I cannot prove that is the case but equally you cannot prove it is not.
Now I would like to change direction a little and use Ebringer to support my side of the argument. I know that this leaves me exposed among all you Ebringerphiles. But let’s give it a try.
At the time of his studies presumably diagnosis of AS was done in much the same way as it is today without the Klebsiella antibody test. So among the group of volunteers he screened for his studies there would be some who met the normal criteria which doctors use today but did not have a high level of Klebsiella antibodies (let’s call them Low-Kleb AS for short). These people had already been diagnosed with AS by doctors presumably and if they did not have AS they probably had something closely related. Why screen them out? Why not conduct the study including both groups and then report separately on the findings? If he believed both would respond to his NSD / LSD diet there would be no good reason to eliminate them from the study. In fact inclusion of both groups would surely enhance the acceptance of his studies by the medical establishment. He would then have studied all those diagnosed with AS by doctors.
Screening out the Low-Kleb AS would make sense however, if, in his practical experience as a rheumatologist, he had already learned that they did not respond to his diet. His goal was to prove the effectiveness of the NSD / LSD diet on patients with AS. It seems likely then that he screened out Low-Kleb AS from his diet studies because they would compromise this goal.
To bolster the case I will repeat what I said earlier about my own diagnosis. I believe the symptoms for which I was diagnosed AS - B27+, ankylosed back, history of back problems, pain and stiffness in the back - existed at times long before I was actually diagnosed. But it was only after a course of NSAIDs that I developed arthritic symptoms, flares and sensitivity to food. The NSAID may have caused damage to the gut which increased the levels of Klebsiella. But earlier I would have had all the classic symptoms of AS (Klebsiella unknown) with absolutely no sensitivity to food. I now have the sensitivity and I know the difference! If there are people diagnosed with AS who are like me a few years ago they would genuinely not have any sensitivity to food.
I am more convinced now than when I began this post that among those diagnosed with AS today there are some who genuinely are not sensitive to diet. They may well be the Low-Kleb AS discussed above.
Wally
Hi Wind_rider
You wrote "..my theory that it's a bunch of people who actually have rheumatoid (or God knows what else autoimmune problems or infections) gumming up the diet results ....". This fits nicely with what I have written to John above - the Low-Kleb AS who have "God knows what else autoimmune problems or infections".
You seem to suggest that questioning the application of the diet to any AS weakens the case for LSD / NSD , offers an excuse for those looking for one and encourages more use of NSAID. That may perhaps be so but it should not stop us searching for the truth. If there are people diagnosed with AS who genuinely do not respond to diet we should admit it regardless of the consequences.
You said “There is an exception for every criteria.” I think that the Low-Kleb AS may be that exception among the general AS population.
Wally
Well, the meat got digested, unlike all the wheat flour. As for John's veggyism I guess it is a legacy of his hippy days; I wonder if he made it to Kabul? Sadly this rumour spreading will not trouble my conscience!
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Wally,
So far all you have managed to come up with are two people who actually didn't practice the DIET and therefore you expect me to happily agree with your conclusion the diet does not work for them. Nice try. You sound like one of those jokers over on the Spaa.
And AlohaBen, if you are posting what you ate on a diet forum, to not expect comments is naive. I'm only alive at this point because I am unfashionably arrogant, I've had this crappy disease a long time and there is only one person in this world who knows what I actually put myself thru to pass for normal, and I am not going to take any crap on that topic.
Gerard/Ted,
Thanks for the post....
That is my mode of operatioin. Low Starch... starch typically brown rice each morning. A good serving in the morning is enough to get me through the day with no issue. But of course, this does bring on the low back pain. Currently fighting it off with lots of stretching, Zyflomend (Cox 3 herb supplement) and Bromolein.
Finished the 3 day apple fast on Sunday and was by far and away the easiest apple fast for me to date... but the first since January. I plan another for late December.... results from this one seem very good thus far.
My weight is good again with the low starch, back up to a healthy 191 as of this morning.
I keep looking for answers.... and yes Gerard, I sometimes do expect a little too much of myself. Sometimes that is good and sometimes that is not so good.
Take care,
Tim
Pain is inevitable. Suffering is optional
Wally - food sensitivity does not equal the starch response!!!
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Hey Loz there is still amylose deposited in pockets within the body which could feed "internal' Kp if such exist and also glycogen in meats which is just a form of branched starch more like amylopectin. I suspect there is a lot in pork.
Leaner wild meats would carry very little starch i would say (guess).
Now grain-fed cattle....
Hmm!
LSD/NSD is not based around John's condition each of us are different, LSD did little for me while NSD and cold turkey on NSAIDs eventually worked.
Kp can feed on di-saccharides - even the mono-saccharides if they are not all absorbed early.
Ted
Hi, Wally:
In reply to:
you cannot use Ebringer’s studies to scientifically prove there are no diet-insensitive AS sufferers, which is what you and others attempted to do earlier in this thread. Since he filtered out those AS volunteers without high levels of Klebsiella antibodies
It was not my intention to give the impression that there are no vegetarian tigers, only that Ebringer did not find any. I happen to know that there ARE diet insensitive sufferers and could have easily been in that group myself, if I had wanted to be. Extrapolating the 9-month ESR values for Ebringer's primary test cases, some of them would not have achieved a normal value until 2-1/2 years! I'm a bit less patient and so I opted for antibiotics, fasting, apple diet and total starch elimination (NSD) to speed things along.
He (Ebringer) was unable to 'filter out' AS volunteers without high levels of Klebsiella antibodies because such a group did not exist (as a group), and the rare data point that I have observed with even near-control levels (inactive group), he left in his studies on purpose; for the very reasons you wish to see them. You can look at the data directly--it is posted in the Medical section (I'm going over old territory here). If you do not want to accept the group of 450-600 individuals as an adequate sample size, that is your own choice; based upon this information, however, I have made the personal choice to not call out to any tigers or either anther any panther.
I did say before that Ebringer did not screen out ANY AS individual. Those with inactive AS were just as important for control purposes as those with active disease; please read the papers...I have been through them many times. And again, his definition of AS was much broader than conventional rheumatologists (and, regrettably, is so today), because he recognised PRE-AS (BEFORE SIJ damage).
Like you, I would never have realized that I had any intestinal problems until taking NSAIDs. I do not believe they simply 'uncovered' a lack of intestinal fortitude, they did new damage which greatly accelerated the progress of my disease. Early on, however, I did know that certain foods made my condition much worse and triggered flares. What happened originally is that I thought that these were greasy, fried foods (we fry some meat, but mostly starches), and when I eliminated meat from my diet I did not suffer as much. Now, I understand it is the combination of meats and starches that was the most provocative, and hamburger buns were the main culprit. I have (after 22 years) reintroduced meats into my diet with acceptable results (although...note to Loz...yes I have some moral issue with meat in general but more with certain specific ones which I either totally avoid or eat quite sparingly).
Antibiotics were almost certainly required to take down the occluded Kp colonies which had life cycles totally unrelated to the character of my contents (there is a speech in there!).
I'm willing (and have asked input from Andrei Calin and others) to formulate a more widespread dietary study, and with biological prices still high I believe that I could get a grant to accomplish this. If you have any input for the DOE, I would be grateful for the help.
Best to You,
John
PS: Apologise for spelling recognized incorrectly and for quoting twice from Bonzo Dog Band
A punk stopped me on the street and said: "You got a light Mack?"
I've often wondered about that question ( what damage i might have caused).
The pain and inflammation in my hips had begun, but no doctor had any answer for that...
it took until 1976 for me to get anyone who had any idea what was wrong; and my original
dx from rheumy #1 was not for AS but Ehler-Danlos because of joint hyper extensivity.
I was huge... 328 lbs...this was a desperate need for me; and there was a red-haired girl involved.
I actually took off 3 days for thanksgiving and a week for christmas/birthday festivities; and,
quite improbably my biggest cravings were for orange juice, lettuce and tomatos, not cake or stuffing.
However,i am one of that one tenth of one percent who lost more than a hundred pounds and in twenty-nine
years didn't gain it all back. My goal btw was 164lbs -half sized; I never made it. Got to 179 and the
red-haired girl went off with my room mate...oh well.
my precipitous health problem over the past two years was an ulcer caused by larger and ever larger
doses of NSAIDs...i'm not just a casual observer. thanks for your concerns...
aloha Ben
Loz,
When the Klebs feed on meat that doesn't have to mean that that is the meat you ate. It could also mean YOUR meat or better products from your body that are available in diseased places of the intestine. Spondyloarthropaties are characterised by Crohn like lesions in two thirds of cases and in the other third the lesions are not detected (which doesn't proof they are not there) anyway proof is gathering that there is still inflammation in this one third. Crohn like lesions means ulceration and ulcerations have a bacterial and fungal microflora of their own as the article below show. In the first article Klebs are not specifically mentioned but they fall under the "different species of opportunistic enterobacteria" that are mentioned. These bacteria have a lot activities mentioned to get their energy, for instance they break down blood cells (hemolytic) lectins (lecithinase) milk proteins (caseinolytic) etc. The second article shows how NSAID's promote ulcerization in rats and that Klebsiella is associated with this ulcer formation and thriving on it.
The microflora of ulzerous zone mucosa in patients with duodenal ulcer
[Article in Russian]
Chervinets VM, Bondarenko VM, Bazlov SN.
State Medical Academy, Tver, Russia.
Bacteriological study of the biopsies taken from gastric and duodenal mucosa of 10 healthy volunteers and 74 patients with duodenal ulcer, was carried out. In the gastroduodenal zone of healthy subjects microorganisms of 6 genera (Streptococcus, Candida, Staphylococcus, Bacillus, Helicobacter and Lactobacillus) were detected. H. pylori was isolated in 20% of cases only in biopsy specimens taken from the antral section of the stomach of healthy as monoculture or in combination with C. albicans. In patients with duodenal ulcer activation of opportunistic microflora was observed in the periulcerous zone. More often H. pylori occurred in associations with fungi of the genus Candida, streptococci, staphylococci, enterobacteria, Pseudomonas and other microorganisms (of more than 30 genera). Quantitatively the dominating microorganisms (3.8-5.7 lg CFU/g) were H. pylori, fungi of the genus Candida, bacteria of the genera Streptococcus, Peptostreptococcus, Bacteroides, Gemella, Prevotella, Veillonella, Peptococcus, Bacillus, different species of opportunistic enterobacteria, as well as bacteria of the genera Staphylococcus, Micrococcus, Corynebacterium, Neisseria, Pseudomonas, etc. Opportunistic bacteria detected in the ulcerous zone, as a rule, expressed hemolytic, lecithinase, RNAase, caseinolytic, catalase and urease activity . Sonicated filtrates of such cultures produced a cytotoxic effect on cells HEp-2. Ulcer is an infected wound that needs sanitation.
Second article:
Role of intestinal bacteria in ileal ulcer formation in rats treated with a nonsteroidal antiinflammatory drug.
Uejima M, Kinouchi T, Kataoka K, Hiraoka I, Ohnishi Y.
Department of Bacteriology, School of Medicine, University of Tokushima, Japan.
The role of intestinal bacteria in induction and repression of ulcer formation in the ileum of rats treated with one of the nonsteroidal antiinflammatory drugs (NSAIDs), 5-bromo-2-(4-fluorophenyl)-3-(4-methylsulfonylphenyl) thiophene (BFMeT), was examined in this study. BFMeT was administered by intragastric gavage once at doses of 500-1,500 mg/kg of body weight to Wistar rats treated with and without antibiotics (bacitracin, neomycin, streptomycin), germ-free rats and gnotobiotic rats, and 72 hr later their gastrointestinal tracts were examined for ulcer formation. A single oral administration of BFMeT induced ileal ulcers in specific pathogen-free rats. However, the rats given antibiotics to reduce the intestinal bacteria had no ulcers. BFMeT-treated germ-free rats and gnotobiotic rats mono-associated with Bifidobacterium adolescentis or Lactobacillus acidophilus also had no intestinal ulcers. However, the drug induced ileal ulcers in gnotobiotic rats mono-associated with Eubacterium limosum or Escherichia coli. An overnight culture of B. adolescentis or L. acidophilus or yogurt containing Bifidobacterium breve and Streptococcus thermophilus, when given as drinking water, inhibited ulcer formation in the ileum of rats treated with BFMeT. Gram staining of the ileal contents of normal rats revealed that 97.4% of the stained microorganisms were Gram-positive rods and only 1.2% were Gram-negative rods. In the group of rats with ulcers induced by BFMeT, the Gram-positive rods decreased by 56.4% and the Gram-negative rods including Escherichia coli, Klebsiella, Proteus and Bacteroides increased by 37.3%. However, in the group of rats administered the Bifidobacterium culture, the Lactobacillus culture or yogurt, the percentages of the Gram-negative rods were decreased. Although Lactobacillus was a major bacterium in the ileum of normal rats, the Gram-negative facultatively anaerobic rods E.coli, Klebsiella and Proteus were increased in the ulcerated ileum of rats treated with BFMeT, suggesting that these bacteria are associated with ulcer formation in rats treated with NSAIDs, and that Lactobacillus and Bifidobacterium inhibit it by repressing the growth of ulcer-inducing bacteria.
.
"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-
Lozz,
Intestinal flora also feeds very well on FOS: Fructo-oligo-sacharrides. You can check the scdiet.com on this.
With me it shows off, eating leek or onion truly kills me, like I was not doing diet at all. If NSD alone does not work, one should try FOS as well.
Regards
Arjan
Hi John
Earlier on this thread you wrote -
"Yes, it (diet) will work for everyone with AS but it requires time and more patience than most patients have."
In your last post you wrote -
"It was not my intention to give the impression that there are no vegetarian tigers, only that Ebringer did not find any. I happen to know that there ARE diet insensitive sufferers.... "
These excerpts seem to be in conflict and I have always thought the first was closer to your position.
In discussing this matter I have avoided presenting any new information but have merely analysed the facts as presented by you and Bilko. There are reasons for this approach. Firstly I am a layman in this discussion (but that doesn't limit my capacity to reason and debate). Secondly it makes it easier for anyone reading to follow.
I have quoted several times from Bilko's earlier post (because it is pivotal to this debate) -
(A) "Ebringer's classification into two groups is really very simple; he would listen to the patient's medical history to form an opinion, then if AS was suspected test the level of klebs specific antibodies. If you had inflammation and pain but no elevated klebs IgA then it wasn't AS. Otherwise it was. Often it is extremely difficult for a clinician to diagnose with the usual criteria, and some of the people in the group who do not respond to diet will have the wrong diagnosis."
and later "It is true the IgA-Kp test is not standard path lab for AS".
You have not disputed this evidence so I have assumed I could use this as a basis of argument. Is this unreasonable? Whenever I have been wrong I have been quickly informed of this, which is as it should be. I have also assumed that when Bilko said "If you had inflammation and pain but no elevated klebs IgA then it wasn't AS.", I could assume Ebringer did not include in his studies those whom he considered did not have AS (although that is not explicitly stated). Again this assumption was not challenged.
When you wrote in your last post "He (Ebringer) was unable to 'filter out' AS volunteers without high levels of Klebsiella antibodies because such a group did not exist (as a group) ..." and "I did say before that Ebringer did not screen out ANY AS individual. " surely that conflicts with Bilko's statement. If he tested for 'klebs specific antibodies' and did not include those with 'no elevated klebs IgA' then he has screened out (or filtered out) those patients. Whether they existed 'as a group' I cannot see as significant.
Would you please clarify where you stand on the statement of Bilko labelled (A) above.
Wally
In reply to:
"If you had inflammation and pain but no elevated klebs IgA then it wasn't AS.", I could assume Ebringer did not include in his studies those whom he considered did not have AS (although that is not explicitly stated). Again this assumption was not challenged.
Wally,
Ebringer was running a rheumatology clinic; he had to diagnose and treat the patient. If it wasn't AS he didn't show them the door, he had to find out what they did have, search for a better diagnosis and treat them.
Once I went to the clinic and when I sat down he said look at this, and pulled out his file on a young woman who was waiting outside. He said how when he first examined her he thought it was RA, so back in the lab his research student tested for a high level of proteus specific IgA. The test did not support the diagnosis so the student tested for klebs IgA - sky high! AS!
I think that because he was looking at things differently he used to get quite a lot of difficult cases referred to him for second opinions. The patients were not filtered out, faulty diagnoses were.
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
In reply to:
Secondly it makes it easier for anyone reading to follow
*BS Alert!!!* *BS Alert!!!* *BS Alert!!!* *BS Alert!!!*
So...you're more worried about the audience than getting clarity? Trolldom, if ever there was....
(But then....there's something awfully familiar about you Wally - maybe you're more of a sock puppet? Hmmmmmm)
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Hi, Wally:
This might be one of the sources of confusion, but could easily be resolved by reading the Ebringer papers on this site:
When a person with AS is experiencing a FLARE his IgA-Kp is greatly ELEVATED. If NOT in a flare the IgA-Kp is between (high-) normal and moderately elevated; these are classified as AS but INACTIVE.
BOTH active and inactive AS people were included in Ebringer's study groups, so I do not understand your concerns about filtering; he is a primary maths and statistics person, so is very aware of the potential errors which could have resulted in bimodal distributions, taking great pains to avoid just that.
Yes, many people with AS really do not respond to the diet very well, but there is a subjective component: 1) Do they have elevated ESR when in flare? 2) Was this measured before starting on the LSD/NSD and midpoints? Getting the subjectivity out of the equation is important. Remembering just because carbohydrates are comfort foods is enough to get a general negative review even if nothing else changes.
Other reasons (for not responding) are complicating factors we have discussed already. Deciding whether these people would have otherwise responded is academic...but that is the nature of our discourse here. I quite firmly believe that there is but one mechanism for AS, even in non-B27s because they may be B7 CREG or some other similar reactive type. Ebringer did not prove this because the only group he excluded were those with AS who were non-B27; these were so few that he felt he could not get a valid scoring on them (remembering that over half of those with AS and 'non-B27' sent to him were retested and became +B27s). There are several non-B27s at kickas who DO respond favorably to a reduced starch regimen.
The seeming inconsistency relates to the way the question is asked: Does everybody respond the same to the NSD? NO. Does that prove that there is more than one mechanism for AS? NO. None of us got sick overnight, and to expect a rapid climb backwards down the spiral ladder that got us into this mess in the first place is unrealistic; many do not have the patience to persevere.
We focus on Ebringer because he is the guy who figured it out, but others have (as mentioned before) previously had the observational capacity to ferret out the cause of AS (the Giraud Campbell work, especially) and that cause was related to starch intake. And in that particular case was not even limited to AS, but Campbell included RA and OA in his observations and X-rays to prove it--before 1980.
And today we are still stuck with the Kelloggs fools pyramid with grains so pervasive that most of us, from time-to-time will give in to temptation. The difference is that we will know what caused the flare, and can figure out how to extinguish the volcano.
Health,
John
A punk stopped me on the street and said: "You got a light Mack?"
I quite firmly believe that there is but one mechanism for AS, even in non-B27s because they may be B7 CREG or some other similar reactive type.I'm glad you mention this and that it got some space in the Ebringer papers i read recently. I've always believed the cross-reactivity could show up for B27- people as the symptoms are still so very similar. I can think of half a dozen people on KAS who may benefit from a B7 check - it may help them feel more like a typical AS sufferer, not wishing to evangelize NSD to them of course...
Ted
Whoah Ted, if Wally has *anything* about him he'll be fully aware of the B27 sub-types that are quite openly under research at the moment...and the rest *tsk*
Don't buy into it fella!!!
Let him get on with it!!!! LOL
Hi Bilko
You said "The patients were not filtered out, faulty diagnoses were." Earlier you wrote "some of the people in the group who do not respond to diet will have the wrong diagnosis."
That's agreement that there is a group of people currently diagnosed with AS today who do not respond to diet. I am happy to accept this group includes at least those with ''the wrong diagnosis'.
Wally
Hi John
I accept you would get the message across better had I read all the Ebringer papers you sent. When this thread is finished I intend to do so. But if my questions were satisfied by reading his documents the same would not be true of others observing this discussion.
I spoke to a member of the AS rehab group tonight. He has been diagnosed AS for many years. He has previously been on NSAIDs but has stopped taking them and now takes no medication. He exercises a lot. He has not tried NSD /LSD, eats with no restrictions and remains convinced his symptoms are completely unaffected by food. His pain occurs periodically, he said 6 months or so, and he sees no connection whatsoever between this pain and what he eats. He is not opposed to those who support the use of a reduced starch diet. He simply does not see the need in his case.
Of course this is not a scientific study and there is a ‘subjective component’, but it is the type of story which has me, and I gather a lot of other people, wondering.
My 'concerns about filtering' were simply an interpretation of what Bilko wrote which was never challenged by anyone. "Often it is extremely difficult for a clinician to diagnose with the usual criteria, and some of the people in the group who do not respond to diet will have the wrong diagnosis." So did Ebringer include ALL the patients with 'the wrong diagnosis' in his studies?
Surely your approach is to use the results of a carefully controlled study group and apply them to another group with unknown and probably very varied controls.
Consider the range of competence of rheumatologists diagnosing patients with AS. If Ebringer is at the expert end, what is the quality at the other end of the range? Would Ebringer accept all patients from those doctors if some had 'the wrong diagnosis'.
Isn’t it a bit like one of the those competitions where you don’t have to choose the most beautiful but the one everyone else thinks is the most beautiful. For Ebringer’s studies to cover the full range of those diagnosed with AS today he would have to include the worst cases of mis-diagnosis by the most incompetent rheumatologist. Can you be sure he did? Because if he didn’t, the ones he left out could be the ones who don’t respond to diet. Perhaps the patient I spoke to tonight is one of them.
Wally
Hi Wally,
Your comment has me confused.....
In reply to:
For Ebringer’s studies to cover the full range of those diagnosed with AS today he would have to include the worst cases of mis-diagnosis by the most incompetent rheumatologist. Can you be sure he did? Because if he didn’t, the ones he left out could be the ones who don’t respond to diet.
If they are mis-diagnosed with AS, but in fact do not have AS we would expect they would respond to the diet. Or are you stating this would be further evidence because we would not expect them to respond to the diet.
Interested in what you believe is a proper diagnosis for AS... maybe you shared in a previous post and I missed it. What are the symptoms of your friend that exercises (HLA B27 +/-, family history, ESR etc...).
Tim
You can complain that roses have thorns or rejoice that thorns have roses.
But Wally:
Either a person has AS or does not. Ebringer did his studies with controls who did not have AS as well as test groups who did have AS, so a valid conjugate analysis would be performed on this basis.
If a test subject does not have AS, and his ESR is not elevated, how is starch restriction going to be measured? There is a way he used, but the expectations were that he would probably not cause healthy persons to become more healthy (measurably).
We have gone round and around on this topic. The problem is not starch, bacteria, AS and Ebringer's results--the problem is the subjective nature of diets demonstrating just how very confused the average person is. It is not instructive to ask anyone whether diet is associated with AS: Doctors do not even know this fact and patients cannot be expected to have real wisdom from their experiences. It took fasting for me to understand this--not for a couple of days but up to 20 days. Ask the guy who suffers whether they have even considered fasting. Even if they believed it would work, how many would do it?!
This problem has been covered before--it centers upon our event horizon. The time constants involved in AS have implications against any probability of an individual gaining an understanding of the food connection. The stimulus (starch) and resultant response (flare) are characterized with the following constraints: Stimulus event (consumption of starch) plus between one and six hours initiates response (pain of inflammation, sometimes severe and other times distributed and 'niggling'). This response lasts about TEN DAYS. Ingestion of ONE CRACKER/hours later a flare that lasts for HOW LONG? Ring a bell, now the sound trails off in a matter of seconds. Our bell does not stop ringing!
Ask your AS friends whether they have gone 10 days without starch. "I NEVER eat STARCH." Ok, how much do you have to modify your question to get to the truth? Those fellow ASers aware of the good news want to keep asking the question until they get an answer they want to hear! GOOD NEWS: AS can be cured. BAD NEWS: YOU can't do it! YOU will prefer waiting for a magic pill, asking "Can I eat starch 'till I need glasses?"
There is just ONE AS, but a LEGION of dissenting opinions.
In the future, when you ask a person with AS whether it is related to diet, if they should answer in the negative just tell them the good news that they do not have AS (it would be just as valid as their trusted observation!); they are, after all, paying their doctors to lie to them about everything else.
Cheerio,
John
A punk stopped me on the street and said: "You got a light Mack?"
Hi Tim
The point I was trying to make about .."the worst cases of mis-diagnosis by the most incompetent rheumatologist" is that such people probably exist among the people I see diagnosed with AS. If a study did not include patients like these the conclusions reached would not necessarily apply to them. Those correctly diagnosed with AS may nearly all respond to diet, as shown by the study, but no-one would know how the mis-diagnosed would respond. They could be the ones in the general AS population who did not respond.
Your question about "..a proper diagnosis for AS.." covers quite a lot of what has been written on this thread. My rheumatologist diagnosed me based on - B27+, ankylosed spine, history of back problems and current back pain, ESR 21 - and I suspect that's about all. I think he asked me questions about symptoms just to humour me. Look back in the thread and you will see that Bilko and John have said that Ebringer placed great significance on a Klebsiella antibody test which is not normally used in diagnosis. The subject of AS diagnosis is also covered in the 'AS Dietary Primer'.
I am sorry I did not ask all the details of the AS patient you referred to. It was a casual conversation and I stuck to questions about diet. He was of interest because he was neither on NSAID or NSD. I spoke to another AS patient tonight who is in the same category (neither NSAID or NSD) but he is aware of response to starch. He maintains (with some enthusiasm) that he has been able to improve his condition and reduce his pain by use of Glucosamine and Chondroitin to replace the NSAID. I also take these supplements but in faith only. I have no idea if they are helping or not.
The latter patient is also interesting in the context of this thread. One of the arguments for NSD is that it helps you go off NSAIDs. But he is taking good supplements instead which do not have the nasty side-effects of NSAID. He knows that avoiding starch improves his symptoms but he can balance that against the pleasure he gets from eating food with starch.
Wally
Hi John
Yes, we have been going "round and around on this topic". From feedback I have had I gather other people have learned from the discussion and thanks for being so patient.
You will remember the original post concerned a group of people at an AS re-hab exercise course. I can identify them as 'diagnosed with AS', but I have no idea whether they have AS or not. I know most do not show an interest in diet as a treatment for their condition. I accept that there must be many who have not tried the diet properly etc. for all the reasons you have given. I asked whether there may be some who genuinely were not helped by diet.
You went into some detail about flare response to starch. I know it because I have felt it. But I am not convinced everyone I see diagnosed with AS has the same experience. They may not have the Ebringer defined AS, but they are still in the AS group and I can't tell the difference.
Bilko has been willing to accept that "some of the people in the group who do not respond to diet will have the wrong diagnosis". Perhaps there was a hint of acceptance in your last post that those wrongly diagnosed could be put into the group who didn't respond to diet. Also even Ebringer found 2% among the REAL AS (the balance of your quoted 98% ) who did not respond so these could also be added.
This seems to have established that there is a group of people diagnosed with AS who do not respond to LSD / NSD diet.
Wally
Hi, Wally:
The 2% who did not respond...cheated. They were told they could and they did; it is not possible to control the food choices of free persons or make them tell the truth. The fact is, 98% had ESR slopes in the negative direction--so Ebringer's LSD is going to cause the opposite effect in only 2%? No effect I might agree, but opposite--there is NO WAY! I'm sure that this was the basis of Ebringer's story about the father-son, where the son told him his father ate a baked potato every dinner. These people cannot help themselves; it is fate ordained.
Their starch consumption CAN be measured. In some it is related to ESR, in others, oral hydrogen values are tabulated, but understand what is being measured is not bad results to the LSD--it is NON-COMPLIANCE.
Best to You,
John
A punk stopped me on the street and said: "You got a light Mack?"
I had an interesting appt. with my rhuemy today and thought I would share what happened. As you all know I have been on the NSD for 8 months, sulfasalazine for 10 months and recently started mthx. 2 months ago.
Now the sulfa has helped, the diet has helped but I seem to be stuck and not making any progress. My rhuemy thinks that I do not have active inflammation at this point and the pain I am experiencing is nerve and soft tissue damage. So she wants me to make an extra effort to excercise every day, take amytriphtoline at night to sleep and nuerontin for the nerve pain and see if that helps. She said to stop the mthx. as it has not made any difference to date.
I am not sure if I totally agree with her but I really have no choice but to try. I do excercise most days but propably not every day and have joined yoga and it doesn't make things worse. So possibly this is why the diet does not appear to work for me?
Does this make sense to anyone? What do you think?
There is no drug stronger than a good attitude.
Hi, Deborah:
If your pain is not due to inflammation, the diet will be of minimal short-term value. It is not always that easy to determine, however, the exact nature of the pains. Supplementation is almost as important as diet, and I have sometimes felt that I eat just to get all the pills down. Since AS causes damage that is much like OA, the glucosamine/chondroitin supplements are primary and in my opinion everyone with AS should be taking these along with zinc, vitC, vitE, extra Bcomplex, copper, selenium, and some vitD during winter. There is no doubt that repair will take some time, but it is important to understand the nature of the infection. Healing cannot proceed at normal rates until the Kp are under control and maintaining the diet is central to this effort--even if the pains are from damage.
Good luck to You,
John
A punk stopped me on the street and said: "You got a light Mack?"
Deborah,
I think your rheumies advice to make a bigger effort to exercise every day is very important. If I had not started swimming 26 years ago I doubt if my present health would have reaped all the rewards of the LSD started over 7 years ago. OK, into your gym slip . . .
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Hi John
I only used your figure of 98% because I was too lazy to look up your other quotation which I thought was from the same 2% balance. Here it is -
"It was not my intention to give the impression that there are no vegetarian tigers, only that Ebringer did not find any. I happen to know that there ARE diet insensitive sufferers ....Extrapolating the 9-month ESR values for Ebringer's primary test cases, some of them would not have achieved a normal value until 2-1/2 years!"
Were those ones cheating too?
By the way the mis-diagnosed ones would not be vegetarian tigers. Zebras with indigestion perhaps?
Wally
Hi Deborah
I agree totally with Bilko about the exercise. Since I have been doing 2 hours a week of exercise in the gymn and pool directly aimed at AS sufferers and supervised by a physio I have become more limber (or, more aptly, less stiff) than I have been for years, even before diagnosis. I average about an hour a day with swimming and my daily exercises and they help. But it is the special exercises directed by the physio, to move parts I had never exercised before in my life, which I think has made the major difference.
Maybe with more of the right exercise you wouldn't need all the other drugs.
Wally
Wally, Deborah, we do well to emphasise the exercise as i don't see anything else touch general stiffness except for fasting which is no long-term solution...
A mate gets chronic migraines
(which lasted up to six weeks!!!!!) so i coaxed him into looking at starch and glucose index and stuff - not because i knew anything about diet and migraine, but to get him to get out there to study it and take control. He eventually found out cheese (which he loves to bits) was a pre-cursor and that certain exercises gave him the same general malaise that heralded a migraine attack....
So he practices hard at those exercises until they give no such feeling, then moves onto a different muscle. Real success story as he is now TOTALLY in touch with his body and aware of what is happening to it/with it.....
Stress in the neck and shoulders was a huge factor for stiffness which only unfamiliar exercises could alleviate. A lot of these were based around isometrics and becoming bi-laterally equalized.
Ted
HI John,
I am not sure I totally agree with my dr. about it not being active inflamation over soft tissue damage. It is very difficult for me to tell the difference between the two as it feels just the same only not as intense. She is judging her opinion on my blood work ESR was 6 this month, but my ESR has never gone beyond 20 which was excruciating pain. So this is 2/3 better than last year at this time.
I take quite a few supplements but not the glucosamine, maybe I should add that to my list. I am thinking of taking HGH. It is very expensive but is supposed to help with healing. My GP has a sideline of anti-aging which includes HGH and am going to ask him if it could help in my positiion. I have tried just about everything else why not add that to my list.
In the meantime I will continue with the diet though lately I have been testing the waters cautiously with things like brown rice, oatmeal and sprouted wheat bread. So far, it does not seem to increase the pain but it is hard to tell as I have never been pain free for any length of time.
Thanks for the suggestions and I will let you know if I try the HGH if it works.
Good Health to you John.
Debbie
There is no drug stronger than a good attitude.
Bilko and Wally & Ted
I agree about the excercise as well and do make an effort to excercise regularly. I joined yoga and try to walk or bike everyday. Maybe I am not doing the right excercise. I am going to start swimming soon as well. I have a cold right now and want to get rid of it before I start swimming.
I must say though it is hard to be motivated when you are in pain but that is probably the time you SHOULD excercise. I enjoy being active and I guess I should consider myself lucky that I have a disease whose prescription is excercise.
There is no drug stronger than a good attitude.
I don't exercise anymore. I don't take supplements. I get better each week. Just hardcore NO STARCH, NO SUGAR! There is a difference between the pain and the inflammation. Gets easy to tell once you get use to the two conditions. Trunk turn versus no trunk turn.
You wouldn't know I had AS if you met me. Not anymore anyways.
Just bragging!
Allan
Hi Allan,
Glad to hear your good news. You are an inspiration to all who doubt the diet. The more I think about it though the more I do not believe what my dr. says that I do not have active inflammation. She is making her judgement on my sed rate which has never been out of normal range. Now it is much lower and my pain level does correlate with that but I do believe my disease is still active. Anyways I will follow her instructions until next appt. and go from there. Keep up the good work Alan, you deserve to brag.
There is no drug stronger than a good attitude.
Hey Deb,
Seems the pain I get can mimic inflammation somewhat. I believe most people who have a fused SI are probably fused a little to the left. AS is suppose to cause a pull to the left on the spine, curling that way until fused. My SI is fused and looking in the mirror without a shirt I can see that my trunk is turned and set slightly to the left. Of course this may be just in need of a couple of weeks of adjustments from a chiro, but with the fussion, who knows. Everything else all the way up get looser and straighter each week. I have constantly strecthed for years. Whether sitting in a chair or just standing around, I'm usually testing my ROM limits and trying to push beyond. Previously while inflamed I would do this type of stretching and after stopping and relaxing I'd find I was just like before, tight and tender, within a few minutes of stopping. That's inflammation at work. Now without inflammation I sometimes wake up stiff and sometimes not much, but movement relieves the stiffness and it doesn't just come right back. I work 10-12 hour shifts and by the end of the day my back is tired and I have to consciously work at remaining erect, but I'm learning a little stoop by days end is ok. It resets after my sleep and I start over again. But, I am gaining ground very quickly. I had almost come to the conclusion that I was fused everywhere except about 5 vertebra in the middle of the back that I needed to pop a couple of times a day to stand erect. My ROM was horrid throughout my spine and neck. Now that it is all releasing I'm finding that my SI is all that fused and I only know that because my Doctor had it xrayed. I'm amazed at how strongly the the muscle must be to have held me trapped like they had.
It's a slow process of release or fast depending on whether you view months, days or hours in the overall of it.
I believe exercise really helps and I going to get back to it. Mostly just walking and stretching exercises. I still stretch constantly where ever I am, not a routine, just pushing the limits on the ROM.
So anyway, if you can exercise, just walking, and you get relief from inflammation and it doesn't just come right back within a few minutes of finishing. Then your probably not suffering from active AS so much as just misalignment.
Watchout adding stuff back into your diet. It'll creep back up on you in a stealthy sorta way.
Allan
Hi Allan,
When you put it that way then I do not have active inflamation just left over pain from the inflamation I guess. Hard to know exactly. It makes me see red when they say fibromyagia. I excercise every day ( except lately because I am getting over a cold) Walk one day, ride on my recumbent bike the next and every day stretches and yoga 2x per week.
Anyway I have been testing the diet more and more lately with no changes in pain levels. To date I have eaten brown rice, rice crackers, oatmeal and sprouted wheat bread. No specific reaction or increase in pain. I also have slippery elm and apple cider vinigar every day. I have also started the Roadback protocol. I have been on it since Aug. 2003. Hoping it is the answer to my pain? I will be sure to let everyone know if it works.
In the meantime, good luck with your diet and your amazing progress. Hope it continues and each day finds you a little better!
There is no drug stronger than a good attitude.
Hey Deb,
I had a weird thought as to a new name for the NSD. Just, 'Nothing Works!', profound, huh? hehe.
It took me three tries in the last ten months to get to where I am now. Week off the first time and 2 months off the second time. Though the second time I tried to eat mostly NSD, but added some other stuff a couple of times a week. It didn't work. I'm happy with the food these days and I find I'm not hungry. I just feel empty and I refill. I think I'm sitting at about 167 so 5 lbs. went some where. Great energy and mental clarity though. I feel like dancing, I had forgotten what normal really felt like. I hope I don't take it for granted later. I'm see the body as machine that gets us around in this life. Funny to think in those terms. I was adding disel to my tank though I ran on regular, hehe.
Sorry to be a little repitious, but there's not enough post these days for people to read in here.
Anyways, If wishes were pennies you'd all be cured and I'd be broke....
Wishing you well anyways!
Allan
In reply to:
I believe most people who have a fused SI are probably fused a little to the left. AS is suppose to cause a pull to the left on the spine, curling that way until fused.
Hey Allan, I thought that was just me! Do you know why?
Jan, did you spot that?
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
Well, I read it awhile back. I don't remember if it was a post or a...Hmm, are you going to make me look around or are you going to re-enlighten me?
Perhaps we are all just a little twisted in one way or another.....
Allan
In reply to:
Jan, did you spot that?
Eh? Spot what??! *confused*
Looking forward to being enlightened (aren't we all haha!)
Regards,
Jan
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
In reply to:
Perhaps we are all just a little twisted in one way or another.....
Hey Allan
I have very good reason to believe that might just be the Understatement of the Year
Take care,
Jan
If my life is for rent and I don't learn to buy
Well I deserve nothing more than I get
'Cos nothing I have is truly mine
- Dido
Allan & Jan,
yes, I'm bent.
(Well that's off my chest, bravely, not having a clue has to how that will be read in the US of A)
This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)
