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Hi - this is my first post here. :o)

I am curious if most of the rheumies you have had experience with know about the klebsiella connection with AS?

I haven't been dx yet, but I do have a rheumy appt soon. I have a history of a klebsiella infection in the past. I'm guessing most folks never knew they had it, but I actually have the test report to prove it. ; ) Do rheumies regularly test or treat AS'ers for this?

I'm busily trying to read all previous threads on this, so I hope I am not repeating a recent thread.

Thanks!

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I could be wrong, but I believe there isn't much written in medical literature about Kleb and AS beyond that first lot of stuff (including I think just one published paper) from Alan Ebringer, and that is now really quite old in medical research terms. I would imagine that while a lot of rheumies would be aware of Ebringer's work (as a kind of passing note of a different approach), it wouldn't be something they would base treatment on. You could always try doing a google scholar search of "AS and Klebsiella" to see.

A tack that might work better for you would be if you could link that kleb infection to the triggering of joint pain on the basis of a "reactive arthritis" that then developed into AS, but I still don't know if you'd find a rheumie who would consider treating the kleb as a primary treatment strategy, but you never know - definitely worth asking.

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My Rheumy just looked at me blankly then fed me the standard doctors' line (which I was familiar with because I used to work for the Breast Cancer Foundation and all the board of advisors were doctors and said the same thing to anyone claiming one thing or another can "cure" or "prevent" breast cancer)...which is: "A healthy, balanced diet is best, there's no evidence to prove that diet can help..blah blah.."

In my experience medicine/science is often actually far behind "lay people's" claims, and ends up proving something way after the fact that thousands of people have experienced something working (or not working). Which is bound to happen as there's no huge drug company to fund studies and then benefit financially from proving that diet may help different conditions.

How awesome would it be though if your rheumy was familiar?

Cheers,
Emily


Diagnosed March 2012
First symptoms December 2011
31 years old
Determined to change my poison into medicine!
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Hi there, and welcome to KA.

No. That is the answer to your question. You won't find many rheumies who will endorse the klebsiella theory with regard to AS. Dr. Ebringer has never proved his theory to the satisfaction of the medical community at large. Testing for kleb. p. is not part of the AS diagnostic criteria and, frankly, I wouldn`t even bring it up to your rheumy when you go in. Just let him do his job and find out what`s wrong. Later, if you have AS and are under treatment, you might raise that you`ve noticed you feel better if you avoid starches.

I don`t subscribe to the kleb.p. theory as the be all and end all, but I do know that avoiding starches has helped a lot of people. Personally, I avoid wheat and glutens, as I feel much better overall when I do. It certainly can`t hurt.

Hugs,


Kat

A life lived in fear is a life half lived.
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My rheumy was aware about Kleb,and when i mentioned it to her she just snickered and said there was no proof that it worked ,but have heard a few that said it helped to be on low starch diet.She said i could give it a try if i wanted to live the rest of my life without eating the things that i love,but will still have painfull AS.




Happy Trails To You Until We Meet Again




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With klebs being the most prominent bacterial infections in hospital settings, I doubt that a rheumy would give any significant thought to a prior kleb infection when dealing with AS, unless he had already bought into the kleb link to AS. As far as living the rest of your life without the things you love, I don't miss much from before I started NSD. I especially don't miss the excessive pain that was a constant part of my life.

--Greg

Last edited by gbash; 10/29/12 01:06 PM.

AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.
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I note that comments so far are focussed on treating Kleb by diet (i.e. no starch diet to starve the kleb into submission) but there is also another tack that has been taken - antibiotic protocols. Again, very little if any evidence-based medical recommendations for this, but something that probably about the same proportion of doctors might have heard of (i.e not a lot). The Roadback foundation used to help folk get onto antibiotic protocols - not just for AS though, I think, and there is a bit more info on their website.

http://www.roadback.org/index.cfm/fuseaction/community.display/display_id/505.html

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Hmmm... Actually mine was treated successfully with cipro many years ago. I was looking at the study info as suggesting that klebsiella is a trigger for starting AS symptoms - not so much that the pain/stiffness/fatigue would go away once the kleb was treated. I was also thinking the low starch diet was more about not acquiring new infections, but maybe this is all because my infection was treated - so that's my bias when viewing the literature. I thought I had seen several studies regarding kleb acting as an agent to essentially activate the HLA-B27 gene and cause spondy symptoms. Apparently I need to pay closer attention to authors and dates! :o)

I eat gluten free (7 years), dairy free (11 years), and allium free (8 years). The GF diet was able to send me into a long period of greatly reduced pain, no fatigue, no new symptoms... so I do believe that helps, at least for some. In fact, of all the treatments i have tried - dietary changes have helped me more than any other (though not 100%).

Unfortunately, pregnancy, delivery, and breastfeeding shocked my body back into a major flare that is causing my symptoms to get worse in a hurry. I have had symptoms for 20 years (with 5 of those being in a "remission" for lack of better words). No doctor has ever even suggested I see a rheumy (oddly)... so I finally requested it myself. I go to the University Rheumy in a few short weeks. I may or may not bring up the kleb. It really depends on how the appointment goes. :o)

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I have often wondered if NSD really works ,why does it not work for everyone.If starving the klebs from starch is the reason for AS,anyone on a NSD should be theoretically free of all AS symptoms.I have read on this site that many people have tried the diet and it didn,t work.
I just couldn't imagine myself not ever having cakes,pasteries,potatoes,pizza,subsetc etc.Mostly everything has starch in it today,unless i want to be a vegetarian or on the Atkins diest(meat only).Mabe my pain isnt that bad that i dont want to try it.I personally Have As ,and to me that is enough.I dont want to have to give up another part of my life to saying goodbye to all the wonderfull foods of the world.
Just my opinion no offence to anyone.

John

Last edited by fonzy; 10/29/12 06:26 PM.



Happy Trails To You Until We Meet Again




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Originally Posted By: fonzy
I have often wondered if NSD really works ,why does it not work for everyone.


Well one hypothesis is that there are many triggers for AS, klebsiella being only one of them. And maybe it's not the kleb specifically, but the gut flora that is out of balance that is the issue for those who (possibly) had their AS switch flipped on by kleb. So eating a low starch diet is definitely a beneficial step towards bringing that gut flora back into balance. But so is addressing food allergies/sensitivities, etc.

Others may have had their AS switch flipped on by other means.

Generally speaking, having multiple options for a trigger is common to most, if not all, autoimmune diseases.

Just some possibilities!!

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