Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is AS a Disease or a Reaction?

I am sure this will stir up some stink but this is what is going through my head.

Is AS a disease or a reaction to KLEBSIELLA? This is what I would like to have answered. I was told it is a disease. The facts show that with AS patients with the gene HLA-B27 that they have increased levels of Anti- Klebsiella and Klebsiella attach to the gene. Ok I can believe that. It sounds reasonable from the studies I have read. Alan Ebringer suggest this:

Salazopyrine is known to be an effective drug in treating AS,33 which also has antibiotic properties against Klebsiella. Preliminary studies from Finland indicate that the titer of anti-Klebsiella antibodies falls following treatment with salazopyrime.
Other methods of reducing Klebsiella could be by lowering the amount of starch in the diet, which is known to be a substrate for Klebsiella proliferation,12 and this could explain the higher rate of Klebsiella isolation observed in healthy males.18 Whether substrate availability for bacterial growth could explain the male prevalence of AS, awaits further studies; however, if removal of Klebsiella microbes and reduction in anti-Klebsiella antibodies did not arrest the clinical progression of the disease, then this would be a critical Popperian test of the theory and disprove the hypothesis that "AS is caused by Klebsiella."
The results of these therapeutic studies are awaited with eager anticipation, not only as a critical test of the theory but it may also provide a new approach to treatment.

So my thoughts are can we cure Cancer by eliminating the intake of whatever causes the cancer after we have it. No, if we have cancer we have cancer. It is a disease not an allergy. We can remove starch from our diets because it is a breading ground for klebsiella but the fact is. Many of the foods we take in that we think are good for us are full of klebsiella. Its all over everything. You can gain it from the hospital, from contact with people, from surgery, from raw vegatables. It’s a tuff [*bleep*] and we cant eliminate it completely and from what I have read we need it in our Colon.

So my question is really, by reducing the amount of starch we take in, is it really slowing the effects of the disease? That would suggest that it is a reaction instead of a disease.

Now I understand why TNF blockers bring relieif. Its because the pain we experience is from the inflammation we have. The inflammation we have is directly linked to the ANTI-KLEBSIELLA levels active in our bodies. The TNF lowers our immune system in turn lowering the ANTI-KLEBSIELLA levels. Reducing inflammation and pain. So all we are doing is putting a bandaid on the result of AS. Nothing for the cause.

Now if it is that starches cause the ANTI-KLEBSIELLA to activate or flair then I see the benefit of the diet. I find it hard to believe that taking in more of the bugs is the problem though. I think now that we have the disease we need to find Why the KLEBSIELLA attach to the gene HLA-B27 but this is only a start because not all AS patients have this gene.

I have no answers, only questions

You might not have answers but those are very good questions, Reese.

To add to your thoughts, consider the fact that there are many auto-immune diseases. If Klebs are causing or contributing to AS, what is contributing to the others - lupus, RA, MS to name just three. Is there a similar mechanism at work, are the diseases related to each other, why do some people get them and not others, why do people who are seronegative still get RA, or are B27 negative and still get AS?

I suspect we're dealing with a very complex group of factors and there is no simple answer. I think diet may be a big factor but I'm not convinced that's all there is to it. Hence the different responses of individuals to the diet or various drugs.

Thanks Wendy, I have the same questions too but i expressed the selfish question seeing that this is what the docs say i have AS

Reese, your questions are very good ones and have been pondered and debated here, in various forms, many times over the years. We all have come to our own conclusions based on our own reactions and research we may have done.

My thought is that there is a sub-type of AS patients that have a reaction to Kleb. p. Indeed, I would go so far as to say that this is a form of Reactive AS that should be included under the Spondyloarthropathies umbrella (which also includes AS, Psoriatic, Enteropathic, Reactive, and Undifferentiated SpA).

Fact is, the diet does not work for everyone. That said, it works for enough people that I believe it should be given a fair trial (up to 8 weeks) before determining whether or not it works for a specific patient. I also believe that rheumies should be more open to suggesting this for their patients as a treatment option.

Personally, I have virtually eliminated wheat (especially in conjunction with cow dairy), mostly eliminated all gluten-bearing grains, and limit my intake of corn and potatoes. Rice is perfectly fine for me, as are beans and starch-bearing fruits and veggies. The main culprit is definitely wheat and it has affected more than my spine. I've had eczema my entire life, but when I eliminated wheat (in particular), especially in conjunction with sort of letting go of cow dairy (yoghurt, cheddar and ice cream are my weaknesses), my skin is more clear than ever before in my life. This tells me that I probably have some kind of allergy to it that exacerbates my AS. I'm B27+, by the way. It is genetic in me. And I've been showing signs of it since childhood, albeit signs that are only recognizable in hindsight.

At this point, all we have are opinions based on personal experience. The results of the studies done by Dr. E and associates have yet to be replicated satisfactorily by other researchers, such that most rheumies deny the connection completely. As I said above, I believe they are being short-sighted in this, but I understand why they are reticent to accept as fact findings that cannot be fully replicated by everyone who researches it. It is impossible to conduct double-blind, controlled studies on the LSD, and that is the only kind of study that is accepted by the medical community at large.

My personal opinion is that Dr. E's studies do not apply to those of us that do not have (or have very little) blood number elevation when in the midst of disease activity. I, for instance, would never be accepted into one of his studies because my ESR and CRP have never gone very high when I've been in flare. I can be in horrific pain, stiff all over, and still have very low numbers, but this is the criteria by which Dr. E chooses his subjects. They must have elevated CRP and ESR numbers as indicators of disease activity and present inflammation.

You will form your own opinion, based on your own research and experience as you work with the diet.

Hugs,

True, I prefer informative opinions though and not just a feeling i may have so i still double guess what i have concluded so far. I do enjoy the replies also. Some are funny some are informative. Some are just talking. All good though. I dont think that i really believe how i suggested Disease or Reaction either. I think it is a bit of both. Still deciding.

Thanks

Excellent questions, all of which I know the answers too..........but............not telling.........so there

See what i mean Kat?....Funny!!....Hey Kat mentioned something else i have been curious about. Actually many talk about the "flares" they get. This worries me because my pain is pretty much all the time. Mornings are horrible and after i get loosend up some i can function and the pain level pretty much stays the same throughout the day. I am noticing new pains but nothing that i would consider a flare. My x-rays still show no fusion yet suggesting then that its early stages for me. Am i to expect something even much worse as the fusion begins? Or possibly some of those horror stories about not being able to get out of bed? I have had different pains since my teen years but only a couple of years of whole body issues....What is a "Flare"?

The trouble is Ineptwill has only one brain cell into which are stuffed all the answers to all the questions in the world. That makes it difficult to sift through and find the correct answer. Sometimes the right answer is buried under a pile of rubbish that should have been discarded ages ago. Also the one brain cell is getting overfull and may explode in the near future spewing millions of questions and answers all over the universe like Pandora's Box.

That's one reason he's not telling...........

Hi, Reese:

AS is a disease, caused by our bodies' reaction to the over-proliferation of the germ Klebsiella pneumoniae.

Our bodies react more to this germ than other bodies because 1) We are genetically predisposed to AS and 2) We have enough intestinal permeability to allow the germ greater access to our secondary immune system.

If You fast for ten days You will no longer have AS, but it is not really a disease caused by food poisoning, however, once the offending foods are eliminated most disease activity is eliminated. This is not so easy to do, so we need drugs. I prefer antibiotics, since they treat the CAUSE instead of just symptoms.

Fasting for ten days may not take the pain away because AS causes structural damage, over time. The sooner we can get on the NSD the less damage we will have:



I know of several other individuals, on the diet for many years, who absolutely know and claim that the totally halted the damage to where they were when they began the diet, I only include myself in this list because I halted the symptoms but I already had much skeletal damage--AS is a runaway freight train, however, and the osteoporosis after so many years is still giving me trouble. That is why I encourage our younger members to avoid my mistakes. DIET is EVERYTHING (Edgar Cayce to his biographer who had AS albeit not identified officially as anything but "reactive arthritis" certainly it was AS due to Reiter's.) and the most important DMARD (Disease Modifying Anti-Rheumatic Diet) there is, but it takes patience, practice, and self-discipline.

I hope we do not eat much Klebsiella, but if we do (and are not taking too many antacids or PPIs) I'm sure we digest them well enough so that they don't cause too much trouble. We need to "substrate modulate" to control AS; we will always have Klebsiella. (I think Humphrey Bogart said that...),

G'Day
John

My pain is pretty much all the time, as well. Although it varies throughout the day - much worse in the early morning, gradually improving through the day and then back to the same level the next morning.

Any changes in pain level I attribute to changes in medications - I have had no evidence of 'flares'.

My ESR and CRP correlate pretty closely to my current pain levels. When they're high, I'm in bad shape. When I could barely get out of bed (at least not without crying) my CRP was over 100.