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Joined: Sep 2001
Posts: 2,364
Colonel_AS_Kicker
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Colonel_AS_Kicker
Joined: Sep 2001
Posts: 2,364 |
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)
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.
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Joined: Apr 2002
Posts: 12,465
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Joined: Apr 2002
Posts: 12,465 |
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
mig
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Joined: Jul 2003
Posts: 112
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Jul 2003
Posts: 112 |
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
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Joined: Jul 2003
Posts: 112
Journeyman_AS_Kicker
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OP
Journeyman_AS_Kicker
Joined: Jul 2003
Posts: 112 |
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
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Joined: May 2003
Posts: 1,645
Platinum_AS_Kicker
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Platinum_AS_Kicker
Joined: May 2003
Posts: 1,645 |
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.
We cannot direct the winds, but we can adjust our sails!
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Joined: Sep 2001
Posts: 6,179 Likes: 23
AS Czar
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AS Czar
Joined: Sep 2001
Posts: 6,179 Likes: 23 |
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?"
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Joined: Apr 2002
Posts: 12,465
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Joined: Apr 2002
Posts: 12,465 |
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
mig
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Joined: Apr 2002
Posts: 12,465
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Joined: Apr 2002
Posts: 12,465 |
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
mig
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Joined: Sep 2001
Posts: 6,179 Likes: 23
AS Czar
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AS Czar
Joined: Sep 2001
Posts: 6,179 Likes: 23 |
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?"
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Joined: Jul 2002
Posts: 1,198
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Jul 2002
Posts: 1,198 |
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 
Ted  One cannot believe all one reads on the Internet...Abraham Lincoln
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