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#467017 - 04/10/12 07:04 PM Re: Hello again, and a couple of questions. [Re: alibat]
jroc Offline
Magical_AS_Kicker

Registered: 10/30/08
Posts: 757
Loc: New Zealand
hi alison, i hope you can figure out a combination of treatments that work for you.

Quote:
it is most likely there is only one mechanism for all AS. The same underlying disease for Crohn's, Reiter's, and perhaps even Behcet's

reiter's or reactive arthritis as it is now usually referred to is an interesting example. it is known that the disease can be caused by urinary tract infections by chlaymdia and ureaplasma, and gastrointestinal infections by salmonella, yersinia, shigella and campylobacter. in addition to these bacteria that are known to be causative agents in reactive arthritis there are also many that are listed as 'probable and potential' agents such as
Amebae
B-19 parvovirus
Bacillus cereus
Bartonella
Borrelia burgdorferi
Brucella abortus
Calmette-Guerin
Bacillus
Chlamydia pneumoniae
Clostridium difficile
Cryptosporidium
Escherichia coli
Gardnerella vaginalis
Giardia lamblia
Beta-hemolytic streptococci
Hafnia alvei
Helicobacter cinaedi
Helicobacter pylori
Hepatitis B vaccine
HIV
Lactobacillus spp.
Leptospira
Mycoplasma hominis and
M. fermentans
Neisseria gonorrhoeae
Neisseria meningitidis serogroup B
Propioibacterium acnes
Pseudmonas migulae, P. fluorescens,
and P. putida
Rickettsia ricketsii
Staphylococcus aureus
Staphyloccus aureus
Staphylococcus epidermis
Streptococcus salivarius
Strongyloids
Tropheryma whippelii
(http://cmr.asm.org/content/17/2/348.full)

so here we have a disease which is classified as a spondyloarthropathy, which shares many symptoms and also genetic predispositions with AS, that is known to be caused by infections in the urinary or gastrointestinal tract by at least 7 different bacteria, and is also suspected of being caused by over 30 other agents. it is highly unlikely that there is only one bacteria or one mechanism involved in AS. to suggest that this also applies to other diseases such as crohn's (in which mycobacterium paratuberculosis is currently considered the most likely bacteria) and reactive arthritis is a pretty big leap.

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#467020 - 04/10/12 08:01 PM Re: Hello again, and a couple of questions. [Re: jroc]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6126
Loc: Reno or SFLU Philippines
Not a very interesting conflation.

Again, Your Common Knowledge is ,...well, uncommon (oh, Thanks Google-man).

Reiter's is a very specific case, but with any persistent ReA, the model of molecular mimicry applies: No matter which the inciting germ is, after several months that germ is no longer involved in the disease process.

Symptoms evolve. And in susceptible individuals the disease becomes KRA/AS.

One--and only one--opportunistic bacterium that is stealthy and difficult to identify apart from normal bowel flora is the ultimate culprit in every case. It replaces the causative agent that has damaged the tract.

And it is not just bacteria, protista, fungi, worms, and other parasites that can incite KRA/AS symptoms, but even mechanical damage to the gut can cause this disease: Gastric bypass is another cause and probably enough cases have been induced by NSAIDs to be of real concern.

So, advice if You are going to get an ReA; do not be susceptible.



Common Knowledge (skit on SNL starring Steve Martin as host Bob Albert)
[...]
[quote]Jeanne Kirkpatrick: [ peeved ] May I say something, please? This program is an outrage! This program just doesn't do justice to the educational system, which upholds the fragile civilization of our country together!

Bob Albert: Oh well, sor-ry Je-anne! Les is still our champion, but you'll be going home with $400 and a year's subscription to TV Guide! TV Guide, the most widely-read publication in the world.

Jeanne Kirkpatrick: In the United States.

Bob Albert: Oh, whatever you say! Well, anyway, that's "Common Knowledge". And remember: It's not what you know, but what you think you know! Good night, everyone!
(end)



Half the story never gets the job done. No points.
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#467028 - 04/10/12 10:37 PM Re: Hello again, and a couple of questions. [Re: alibat]
jroc Offline
Magical_AS_Kicker

Registered: 10/30/08
Posts: 757
Loc: New Zealand
hi again alison, apologies for having this discussion in your personal thread. i tried to have this discussion with John on another thread but he refused to participate so it is good to see he is back to his best so just wanted to take advantage of the opportunity whilst i have his attention.

Quote:
Reiter's is a very specific case

many researchers would disagree with that. in the paper 'Bacterial agents in spondyloarthritis: a destiny from diversity?' the authors believe that "ReA serves as the prototype for the potential role that bacteria play in the pathophysiology of all the SpAs". They go on to say that "it appears that too much emphasis has been placed on host genetics and host response. While host mechanics is important, the bacteria themselves offer enough heterogeneity, even within the same genus or species, to help explain a large portion of disease predilection. Finally, by demonstrating that several different bacteria with different pathophysiologic features can lead to the same phenotypic disease, it suggests a need to broaden our concept of what role bacteria might play in disease aetiology and, perhaps more importantly, in disease perpetuation."

Quote:
No matter which the inciting germ is, after several months that germ is no longer involved in the disease process.

not according to modern science. from the paper mentioned above - "All of the causative organisms have been shown to traffic to the synovial tissue of ReA patients; in the case of chlamydiae, these synovial-based organisms remain persistently viable for years."

Quote:
One--and only one--opportunistic bacterium that is stealthy and difficult to identify apart from normal bowel flora is the ultimate culprit in every case.

if you can honestly believe that after reading modern papers on ReA then you are really taking cognitive dissonance to new levels. does it not strike you as odd that if klebsiella was the ultimate culprit in every case, that in the hundreds of studies on ReA in which scientists are specifically trying to identify which bacteria are involved not only in triggering arthritis but also in perpetuating it, that klebsiella does not even make it onto a list of over 30 probable and potential agents.

Quote:
with any persistent ReA, the model of molecular mimicry applies


when examining a claim such as this it helps to zoom out first and take a look at the bigger picture. hla-b27 is only one of several genes that we now know are involved in ReA and AS. molecular mimicry is only one of the proposed mechanisms in which hla-b27 may contribute to disease susceptibility and is currently out of favour when compared to the b27 misfolding hypothesis. klebsiella is only one of many bacteria which can potentially cross-react with b27, and it is not even one of the better ones as it only shares a sequence of 6 amino acids, whereas we now know that many other bacteria share 9 sequences including ones known to cause reactive arthritis in hla-b27+ individuals. given the hundreds of amino acid sequences present in bacteria and genes it is very easy to find common sequences.

"After the first studies had been published in which the role of molecular mimicry in B27 associated SpA was investigated, it has been suggested that the small chance that a sequence of 6 amino acids occurs in two different proteins, being only 1:64 000 000), supported the idea that molecular mimicry plays a part in the onset of B27 associated diseases. However, if a protein of x amino acids is screened for a perfect 6 amino acid match in a database of n amino acids the expected number of perfect matches is 0.056 n x . Searching the SWISS-PROT database of 1996 that contained 1.5107 residues for a perfect six amino acid match with a 360 amino acid protein like B27, one would expect 0.0561.5107360 = 84 matches. Therefore, it is actually very possible to find 5, 6 and 7 amino acid matches between unrelated proteins, and indeed this is found for HLA-B27 as well as for other HLA-B alleles."

and even when you get sequences that match, they don't always cross react at those points anyway. "A very elegant study was carried out by Ewing et al. using overlapping peptides of eight residues from the B*2705 molecule, they showed that in fact the antibody response against the part of B*2705 containing the Klebsiella homologous sequence was not directed to the complete homologous QTDRED sequence, but rather to flanking regions"

in the 80's researchers were only aware of one AS susceptibility gene and the molecular mimicry hypothesis was an exciting hypothesis. with the limited amount of information and technology available at the time, they were able to come up with what seemed like a plausible hypothesis involving klebsiella. since then it is been found that most of the evidence that it was based on was not able to be replicated including the role of molecular mimicry between hla-b27 and klebsiella (for a thorough review of the conflicting evidence in molecular mimicry please see - rd.bmj.com/content/58/10/598.full.pdf.

there are also a number of red flags that come up when reviewing Ebringer's theories.
red flag 1 - Ebringer sometimes makes bizarre and unsubstantiated claims as part of his theories. for example he beleives that "Increased prevalence of AS in young adult males could be explained by higher starch intake" but does not cite any evidence that young males consume any more starch than other demographics.
red flag 2 - he has applied similar theories to other diseases which have been proven to be incorrect such as concluding that mad-cow disease was a type of multiple sclerosis in cows and could not be spread by consumption of contaminated meat.
red flag 3 - his ideas have never been accepted by the scientific community. whilst some revolutionaries are initially shunned, his research has been examined thoroughly and repeatedly for the last 30 years by scientists from all over the world who have found legitimate fault with it.

despite all this, his theory managed to lead to the development of a useful treatment. patients in his low starch diet trial and the many patients he treated at his london clinic have derived significant benefit from his experimental diet protocol. he was also a pioneer in the role of investigating the gut as the key to AS which is now one of the main focuses of AS research. so i salute Ebringer for his pioneering work in the gut and AS, and his willingness to experiment with dietary interventions. i also salute John for bringing the attention of diet and AS to thousands of AS patients who have derived significant benefit from it. the time however has come to part ways with placing complete faith and 100% certainty in unsubstantiated and outdated notions of a single bacterial cause and single mechanism. it is time to explore the many more plausible mechanisms by which diet can influence AS symptoms.

Quote:
Half the story never gets the job done.

exactly. i have read Ebringer's half and i have also read the other half. i suggest that you go out and read the other half. it's very easy to not find any evidence against a theory when you are not looking for it and deliberately avoiding it.

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#467034 - 04/11/12 01:10 AM Re: Hello again, and a couple of questions. [Re: alibat]
alibat Offline
Active_Member

Registered: 03/14/10
Posts: 51
Loc: sheffield, uk
Thanks for all the info, and Sue I will try your suggestions for my wrist/hand pain. I will have to keep a food diary. Interesting that someone else has experienced flares around their period. I don't think I have gastritis, I don't suffer bad stomach pains.

The hands / wrist thing is really getting me down, as it really impacts my main hobbies (piano playing and motorcycling). The spinal and hip issues alone limit the amount of time I can spend on these and cause enough problems.

As for a bowel infection triggering the AS, all I can say is that my back symptoms predate my bowel problems by at least 10 years. Can't remember which came first re the iritis, both started within a couple of years of each other. But yes, everything does tend to flare simultaneously which does suggest a link somewhere.

Alison x

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#467037 - 04/11/12 06:42 AM Re: Hello again, and a couple of questions. [Re: alibat]
inkyfingers Offline
Gold_AS_Kicker

Registered: 04/08/09
Posts: 1595
Loc: Melbourne, Australia
Hi Ali,

If you think the No Starch Diet has offered some help / reduction in symptoms, then maybe you might need to keep persisting to get better results?

I am (definitely) HLA B27 -ve and it took a couple of months for me to see any REAL reduction in pain. First I had less stiffness overnight, but it was a very s-l-o-w process for the first 6 months or so - I really had to take the Leap of Faith but eventually it paid off.

Now, 3 years on, I have to admit I've gone from STRICT NSD - that's what I needed to do to sustain improvement (and I never got to "zero active inflammation" status - probably would have needed to go zero sugar, zero dairy etc to make the best gains...)to mostly NSD with the odd lapse into LSD - which makes me hurt more but I can easily get back on the straight and narrow quickly ( blush ) by going back to what I know works for me - STRICT NSD!

I think it is a useful tool to add to other things like the fish oil, daily stretching and 3x weekly resistance training that I need to do to get me the best I can be without devoting 100% of my waking thoughts to my wellbeing - something that it darned near impossible working and raising a family! eek2
_________________________
Louise

Happy to be a physio by day, not happy to be a Spondy 24/7! wink3

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#467040 - 04/11/12 07:20 AM Re: Hello again, and a couple of questions. [Re: alibat]
cemc Offline
Major_AS_Kicker

Registered: 01/25/10
Posts: 2105
Loc: UK
I suppose there is always the possibility that you aren't actually HLA B27 negative - there are several different tests that can be used with varying sensitivity. A positive result is always positive, but studies have shown that in some tests up to 30 percent of negative results show positive when retested and a different testing method is used. You can also get false negatives (but not false positives) due to lab error - carelessness in how the sample was stored prior to testing, delays and age of sample, etc.

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#467042 - 04/11/12 07:49 AM Re: Hello again, and a couple of questions. [Re: alibat]
Alida1 Offline
First_Degree_AS_Kicker

Registered: 09/07/11
Posts: 166
My biggest flare (after 3.5 yrs of 7-9 pain), brought me back to this site and it came from homemade butternut squash soup. In my situation I have seen a very large correlation between starchy vegtables and my flares (my pain is 1-2 when I stick to NS, I have only done this for aprox 5 months and will try LS after a year or so of NS)
_________________________
Where your mind goes your life follows

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#467058 - 04/11/12 12:04 PM Re: Hello again, and a couple of questions. [Re: jroc]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6126
Loc: Reno or SFLU Philippines
What You claim is "modern science" has no effective answers for people, and they do not treat chronic ReA with antibiotics. It is their position that the inciting agency created some kind of "immune imbalance."

No traction or attraction.

That's just the way it goes--we can disagree, but You try and present Your side as more substantial because it is backed by "modern science" when it is not. If You are not a political speech writer, You should be.
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

Top
#467081 - 04/11/12 10:26 PM Re: Hello again, and a couple of questions. [Re: DragonSlayer]
jroc Offline
Magical_AS_Kicker

Registered: 10/30/08
Posts: 757
Loc: New Zealand
hi john. this clearly isn't the place for it so please click here if you would like to continue our discussion.

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