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Joined: Sep 2007
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Hi jroc,

Perhaps I shouldn't have made up those sentences.

Taking second point first, my own experience with NSD and its ability to subdue my IBS symptoms makes me believe that there is some arthritogenic gut bacteria that is being suppressed by NSD.

As for the first point, put another way, if a new bacteria somehow came into existence then our immune system would take some time before some sort of tolerance or equilibrium was established between man and bacterium This would be similar to arrival into South America, the New World, of pathogens introduced by the Spanish. My point, and I can't back it up with any real science is that bacteria like Klebsiella probably predate human kind by a long long time, so would surprise me that we would share HLA structures identical to bacterial epitopes. Having said that their are examples (for instance) of antibodies against Group A Strep (causes sore throat) that can cross react with self tissue and cause kidney failure and rheumatic heart disease.

Nevertheless, I would be surprised if NORMALLY FUNCTIONING Human Leucocyte Antigens (HLA's) could be the source of auto-immune responses to common gut commensals; wuold hope the immune system was more elegant than to have left open this option.

Sorry - a pretty crappy answer I know!

David


Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.
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jroc Offline OP
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Hi David

Don't be so hard on yourself! There's nothing wrong with making up sentences. Its good fun. I do it all the time. Nothing beats becoming an amateur expert and building mountains of theory on molehills of evidence. I am also biased by my own experience and find it hard to look at some things from a completely neutral point of view.

I agree with your points. If everything is functioning properly you shouldn't get problems but when you get the wrong genes and immune system together and introduce some arthritogenic pathogens then bad things tend to happen. Also factor in that nutrient deficiencies in some minerals such as zinc can compromise immune function.



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Originally Posted By: DavidP
Hi jroc,

Nevertheless, I would be surprised if NORMALLY FUNCTIONING Human Leucocyte Antigens (HLA's) could be the source of auto-immune responses to common gut commensals; wuold hope the immune system was more elegant than to have left open this option.

David


I tend to agree with this statement. I think the real problem is not HLAB27 but lies elsewhere and I think the current evidence points to ERAP 1

I also am on a NSD diet, 2nd run here, with no real success story yet. However there is no doubt in my mind that altering the gut flora has significant impact on our immune systems and inflammation levels. Clinical studies clearly show this.

I think there is a real possibility that the NSD is a positive change for many of us with AS on how our immune systems are impacted by gut bacteria. I am far from convinced we know the genetic mechanism that is truly responsible for the benefits. Either way, I think staying with NSD for the full trial and probably a LSD for life is a good choice for me based on how I feel. That simply may be my best option, along with some conventional medicines, until we have a genetic therapy that can alter the responsible gene in oh say 10-15 years or so smile


No families take so little medicine as those of doctors, except those of apothecaries.

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Originally Posted By: drizzit
However there is no doubt in my mind that altering the gut flora has significant impact on our immune systems and inflammation levels. Clinical studies clearly show this.

I think there is a real possibility that the NSD is a positive change for many of us with AS on how our immune systems are impacted by gut bacteria. I am far from convinced we know the genetic mechanism that is truly responsible for the benefits. Either way, I think staying with NSD for the full trial and probably a LSD for life is a good choice for me based on how I feel. That simply may be my best option, along with some conventional medicines, until we have a genetic therapy that can alter the responsible gene in oh say 10-15 years or so smile



couldn't not say it better. it's exactly how i feel at this moment.


34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile
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jroc Offline OP
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Quote:
I think the real problem is not HLAB27 but lies elsewhere

I agree. The fact that the vast majority of people with HLA-B27 do not have AS proves this. So the question is what is the difference between two HLA-B27 positive individuals, one with AS, and one without. Because other genes like ERAP1 are involved we can say that not only do you need B27 but a whole combination of genes in order to develop AS. Even if you have the dreaded genetic AS combo (B27+ERAP1+IL23 etc as most of us here do) does that mean that you will definitely develop AS or is it still possible to have the full genetic complement and still not develop AS due to favourable environmental factors? Once all the genetic factors are known it would be interesting to see what percentage of people with the full complement of AS genes have AS. If it is something like 95% then you can say that genes are the most important factor but if it is say only 50% then it could be important to discover what is different about the 50% who don't get AS.

I would suggest that because some people can eliminate AS through manipulating environmental factors, the full genetic combo is not a sentence for AS but merely a prerequisite. Don't get me wrong I think its important to learn as much as possible about all the genetic factors as this can provide clues to the pathophysiology of the disease, I just think that more needs to be done in other areas but fear that it probably won't get done because there is no money it when compared to the lucrative development of specialised drugs for specific genes/immune dysfunction.




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Very_Addicted_to_AS_Kickin
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Ah yes, it is true there is no money in dietary and other environmental changes, but please don't insult my intelligence with your 'lucrative' comment. We need a balanced outlook on this. Part med, part alternative. Simply put, the diet does not work for everyone who tries it. End of story. However, many find that a combo of dietary and lifestyle changes, as well as biologic or other meds, does help.

So, are these meds a lucrative bet for research? Yes they are, but they have given me, and many more others than the diet, my life back. Something straight dietary changes (and I was on those changes for over a year) and lifestyle changes never did. In combination with the dietary and lifestyle changes, these meds have been an absolute miracle to me. And I know several others here also do the same thing, alternative and medical treatments working together.

Excuse me if this post seems harsh or combative, but really, would you rather they stopped making medications altogether? Hmmmm. That would be productive. The system is what it is. Hopefully, as time passes, things will change. Until it does we have to live with it. Cope.

I'm too damned tired right now to be diplomatic.

Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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I would like to see more research into the triggers as well. We are starting to see that in the cancer area and I hope, once we understand the mechanisms we will see that in the Auto Immune areas.

Simple truth is though that capitalism is about making money. For profit health care will do that, it will make money for its investors and that is all it will do.

Only Government sponsored research with grants probably through the NIH with tax dollars will work on those triggers. That funding is pretty scarce now and will get tougher to get with the coming budget cuts. Basic research is often the target of budget cuts by many of the current political groups.

Last edited by drizzit; 05/31/10 03:12 PM.

No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes
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Very_Addicted_to_AS_Kickin
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Hey Drizz, you are right, and jroc's cynisism is usually echoed by my own. I'm just so darned tired of the cynisism, you know what I mean? We've been over it and over it here and unless people are willing to write to their governmental representatives and actually try to do something about it, it is not going to change.

Yah, capitalism and profit generally go hand in hand. It's wrong, however, that profit trumps the welfare of human beings. This is yet another example of the Great God Economy and its disciples at work.

You're right about the only truly unbiased research being that funded by governments. In Canada right now, our government is only interested in the military and oil. If it benefits a human being, most especially female human beings, the budgets are being descimated. You can imagine how well that's going over with me.

Warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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Hope this will cheer up some of you cynical folks:

I recently participated in a study done by a young medical researcher, Dr. Matzkies, who is interested in pursuing AS triggers, and is having some success in getting funding.

At my recent visit to Cedar Sinai, I talked to one of Dr. Matzkies' colleagues who was quite enthused about the results of her first study, which even won an award from a rheumatology foundation http://www.rheumatology.org/ref/awards/CoreAwards_Grants_2010.pdf.

I should probably write up a post about this study, which explores the link between gut inflammation and AS inflammation...

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Very_Addicted_to_AS_Kickin
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That would be very cool. Thanks for the heads up! smile

Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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