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Joined: Jul 2003
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wallyb Offline OP
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Hi Everyone

I was diagnosed with AS 10 years ago and was able to go into remission within 2 years by following a regime of low-carb diet, supplements (particularly glucosamine) and exercise.

Recently I took a holiday in Indonesia and my AS symptoms resumed just 3 days after my return. The difference this time was that I also had muscle wasting, my urinary system was affected and the pain was much more severe. I found that I had to avoid not only starch but also protein foods, such as meat, fish and chicken, particularly late in the day. The rheumatologist told me I was lucky to recover from my first bout of AS and I would have to be even luckier to get over this one. Of course he did not believe my diet was relevant.

When I chanced upon using probiotics I made a sharp improvement after 10 days and within a month I had halved my anti-inflammatories, the severe pain virtually disappeared and I had mainly only minor symptoms in my hands. After I stopped using probiotics for a few days I immediately relapsed so it was clear the probiotics were causing my improvement.

I continue to experiment with diet, particularly because I am trying to put back the 10 kilos I have already lost, but I am soon reminded that I have to make the changes gradually.

In the last week or two the improvement has stopped and may have actually reversed, which is consistent with the probiotics acting like casual use of anti-biotics – evolving resistance in the harmful bacteria. Ideally the aim would be to eliminate the bad bacteria rather than flush them out with the probiotics.

I am a member of a rehab group for AS patients and over the years have observed that only about 10% of patients found the low-carb diet beneficial. Other patients learned of the improvement of the diet group and tried the diet without success. I am convinced we are simply different.

My condition seems to be consistent with Dr Ebringer’s theory that AS is caused by a Klebsiella pneumonia infection (see https://www.kickas.org/medical/11.shtml on this site). However this has never become the mainstream medical belief, presumably because his results were not obtained by other researchers. I wonder if this could be because the Klebsiella pneumonia cause only applies to the sub-group which is benefited by the low-carb diet (starving the little [*bleep*]).

Any thoughts or advice would be gratefully received.

Wally

Joined: Sep 2001
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Hello, Wally:

I think that for diet to "work," it should be rather draconian. If You notice the ESR chart in Ebringer's "Etiopathogenesis..." paper, after nine months 94+% improved, but whether they would subjectively feel any better is another story: When ESR drops from 66 to 46 the differences might be imperceptible but from 32 to 15 the differences could be miraculous! This was after nine months; most people give up after just a couple and with their physicians offering NO HELP by telling them "diet has NO EFFECT or is 'junk science,' they are happy to return to their old comfort foods. As a vegetarian I nearly "wanted" the diet to fail, but I knew too much when I heard of the LSD and the cause of AS.

And by now, I am thoroughly convinced that everyone with AS should be treated with antibiotics, and Flagyl as a minimum with greatest justification as giardiasis is not uncommon.

I look at Your case as my own experiences when I was in India and the first time avoided 'Delhi belly' but had increased AS symptoms only relieved when I got full and terrible colitis and finally treated with antibiotics.

When I began Professor Ebringer's LSD, the initial results were very spotty, and it was very disheartening to still experience flares when avoiding even his 'four major poisons.' (bread, cake, pasta, and potatoes). So I decided to add more of a challenge to his (then-) hypothesis that K. pneumoniae was the cause: I began various courses of antibiotics.

Within four days, I knew absolutely that I was on the right track, learning later that the half-life of our agent provocateur--IgA-Kp--is about 100 hours, explaining some major cycles observed in AS.

I believe the diet should begin with the most restrictive regimen, plus some kind of antibiotic protocol and I believe that bactericidal agents will take down long-established colonies to enough of an extent that the normal level of AS activity will be lowered. Sometimes it requires fasting for patients to prove to themselves the diet connection, but certainly this helps reduce the level of C. albicans, and may be the factor that helped me avoid some unintended consequences of taking the antibiotics.

As to Your question, I believe that there is only one cause of AS: Molecular Mimicry to the germ K. pneumoniae. People who are not HLA B27 in fact respond to the diet, if given the chance for them to make the diet work for themselves.

When we were still "Brian's AS Web," we had a story about Gary Kilhorn who successfully treated his AS and even resumed his tennis playing after taking antibiotics (Cipro, I believe), but no attention was paid to diet. In just over a year, his AS "returned with a vengeance," and I believe that he had developed resistive colonies within that time. When we study this germ, it is very easy to see why.

In nearly a decade and a half, I have not had a relapse and believe that I have avoided such and outcome, perhaps by combining diet and antibiotics, but also doing this in cycles and switching agents, just to keep the [*bleep*] guessing.

HEALTH,
John

Joined: Apr 2002
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Hi Wally,
I hope things improve for you soon !

May I ask which probiotics you used??
What strains of microbes are in it?

I have been using probiotics with a large number of strains (over 10 strains) and that has been helping me. Shotgun approach really. But if you hit on the right microbe for you, then I suppose even a simple probiotic will work.

The antibiotic protocol definitely works in most people. I myself have experienced relief after taking antibiotics. Just a little warning though: I seem to recall two incidences on this forum (at least one is definite, Allinus) where people have become more sensitive to foods after taking antibiotics.

Sorry to be difficult dragon ol' pal, I respect your awesome work and I hope you don't mind me giving a different opinion.


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
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wallyb Offline OP
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Thanks John and Zark for your responses.

Firstly to Zark on the probiotics.

You’ve forced me to look at this more scientifically. I am using ‘Inner Health’ (2 types). I also have a bottle of Faulding’s probiotics (3 strains including the same 2 as IH but half the quantity). Since I feel my pills are becoming less effective it makes sense to vary the pills to see if I can get any improvement. What is the brand you are using?

You did not comment on the idea that the probiotics are likely to become less effective as the weak bad bacteria are killed off and are progressively replaced by more resistant ones.
…….
It was 8 years ago when I was last on this forum and I can see the diet controversy has not changed in that time. In fact your position, John, is not entirely in opposition to the idea that there are 2 types of AS patients – diet sensitive and insensitive.

From teenage before I was ever diagnosed with AS, if I consumed a lot of carbs at night – say lots of cereal with sugar – I would wake with a strong itch over parts of my body and go running around the park to get rid of it. When this latest bout of AS was worsening fast, I could tell within 1 – 2 hours that a meal (lately seafood or beef) was going to cause a flare that night.

Compare that to someone who has to wait 9 months on a restrictive diet to see some progress. When you throw in some uncertainty about whether the diet will work, no-one in their right mind would go through this period without so many of their favourite foods on the promise of (possible) progress. Most people trying to lose weight cannot stick to a diet for long and that is with the incentive of seeing some improvement.

The difference between 1 hour and 9 months is so stark that you could easily say there are 2 types of AS patient even if they are at opposite poles of a continuum.
.......
I am very interested in both your suggestions of a course of anti-biotics. I will have to take this to my GP, who is reluctant to prescribe anti-biotics, so I will need some names and preferably some scholarly medical justification. I noticed ‘Flagyl’ and ‘Citro’ in John’s post. Are these what you recommend?

Thanks again for your help.

Wally

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>> probiotics are likely to become less effective as the weak bad bacteria are killed
>> off and are progressively replaced by more resistant ones

I can't say I have a particularly well informed opinion on that possibility. I mean.. well.. it makes sense to me that this could happen. I can imagine one possibility of how this could occur : unfriendly microbes eventually adapt their arsenal of toxins and learn via selection how best to kill off the new competition. That is to say they learn and adapt to the new probiotic and try to kill it off in order to maintain their food supply. Just a theory.

Think of penicillin as an example and how it produces chemicals that kill off competing microbes, which we then make use of as an antibiotic. However these offending bugs in our guts are also likely to produce toxins that are much more toxic to our cells than penicillin..

We select antibiotics based on the fact that kills everything else, and spares the human cells to a greater degree (by this I mean we would have rejected it as an antibiotic if it proved too toxic to humans).


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
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wallyb Offline OP
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The proposition that the probiotics would become less effective with time is an extension of the argument against casual use of anti-biotics. If a patient doesn't follow through with the full course, the strongest harmful organisms survive and repeated cycles will create the anti-biotic resistant superbugs. Aren't I doing the same thing with probiotics - allowing the most resistant bugs to survive? It fits with the fact I made rapid progress when I started probiotic use and now, if anything, it is reversing.
I'll ask the pharmacist for the variety of probiotic with 10 different beneficial bacteria.

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>> I'll ask the pharmacist for the variety of probiotic with 10 different beneficial bacteria.

Go for it smile The ones I bought were "primal defence" and "swansons" brands. They call them "soil based organisms" but someone pointed out that this is just marketing, and I think he is right. Nevertheless these two brands do have a good variety of bugs.. I bought them online. Would like to hear of some other brands to try that have 10 or more strains, if anyone finds them please let me know! (:


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
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wallyb Offline OP
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Thanks for the help on the probiotics.

I intend to front up to the GP next week to request to be put on a course of anti-biotics. I will print out some of Ebringer's writing - he has enough letters after his name to impress, even if his findings are not mainstream. i will mention ‘Flagyl’ and ‘Citro’ but will consult the GP also.

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this study would be a good one to take along if you are trying to get antibiotics prescribed for AS - http://journals.lww.com/smajournalonline...tis_with.9.aspx

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Hey wallyb,

I'm not intending to dissuade you, as I know antibiotics work when the right one is chosen. But just making sure you know of the potential pitfalls..



source: http://www.nature.com/nature/journal/v476/n7361/full/476393a.html


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
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