Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Two AS Sub-groups?

Hi Wally,

Your comment has me confused.....

In reply to:

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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.

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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