Hey everyone, good to see the site is as active as ever.

I hate to be a bit of a fly in the ointment but here goes. There's a lot of advice up on this site and a great deal of it is useful. I am certain that all of it comes from the right place with the best intentions.

However it has occurred to me that there are some things being posted that are lacking in evidence but are being stated as outright facts by some members.

For example, there is a widespread belief on the site that AS is related to bacteria in the gut. This is likely to be true. However, antibiotics are not a treatment for AS and have never been proven effective in any significant study, yet I have seen long-standing members on this site say the exact opposite as if it were a first line treatment!

I really don't want to cause a fuss but surely the point of this forum is to give people good quality, reliable advice about their condition(s). I'm not trying to upset anyone, I don't want to single anyone out but as a community we need to be careful what we're advising.

So please, everyone, this is a call for clarity. Lets be clear about what is proven and what is speculation and try to keep from speaking in certainties until we have something to back them up with.

Thanks, hope this comes across in the right tone

Sorry, Andyhill1991:

NO!

If a person wants, they can seek out a physician's recommendations; they are SO SUCCESSFUL at treating AS!

Antibiotics and diet worked for me.
The combination works for many others with AS, albeit most whom are affiliated with this orientation understandably prefer very strict diet alone.

There IS another site doing all they can to totally ignore Ebringer's work; KickAS.org...is not that site.

I will continue to let others know exactly what has worked for me, whether all my reasons are correct or not. And I have been at this for a decade and a half (nearly 100% remission during that time), and assailed by the best of them (and the worst, also!). The years have only cemented my opinion and further steeled my resolve.

Unlike global warming, the science really is finished; just waiting for the medical guilds to catch up.

Good Luck to You in Your studies,

HEALTH,
John

Hi Andy

Unfortunately not all people are able to educated on a topic by presenting them with evidence that opposes their beliefs. I've tried but got nowhere. It used to puzzle and frustrate me but then I read a couple of excellent books on the topic which I would highly recommend:

The Unpersuadables - Will Stor
http://www.amazon.com/The-Unpersuadables-Adventures-Enemies-Science/dp/1468308181

The Believing Brain - Michael Shemer
http://www.amazon.com/Believing-Brain-Conspiracies---How-Construct-Reinforce/dp/1250008808

So, how many personal experiences did it take until the "evidence based" recommendations for VIOXX stopped? How many lives ruined while the peer reviewed studies full of cherry picked data were embraced by the FDA? And, of course, that is not the only treatment which has since been found to harm those using it even with the studies and models being approved.

I spend a lot of time on PubMed and it has taught me to be very wary of studies. the set up of many studies are so haphazard as to encourage the results desired by the funding parties of the study. But, there is still useful information available and I do not discount every study off hand.

It is rather arrogant of you to suggest that only your preprogrammed view of what is acceptable should be the only recommendations that people should make.

Remember that it is up to the individual to look into what makes sense for them. Whether they go for the cut, burn, and medicate model or an alternative mode. What works for one may or may not work for another but that shouldn't stop the person that it worked for from saying what has helped them.

Dragonslayer,

I appreciate you are trying to help people and by all means please tell people what helped you. Who knows, maybe antibiotic do work and it would be great if they do. However, seeing as evidence is fairly poor for it at the moment, maybe wording you advice "What really helped for me" as oppose to "This is the cure to AS" might be a more accurate and altogether balanced way of talking about it.

Pezami,

I appreciate studies may be wrong and there are a lot of poor motives out there. However, that doesn't mean we should give up on proving therapies and the more we can find that works the better! Saying what works for you is one thing and that's great; it gives scientists and researchers areas to look into but declaring it as an outright fact is at best misleading. Anyone should be free to try anything they really think might work for their health problems but the first step to making a good choice is getting the right evidence.

jroc

- That Michael Shermer book is fantastic but I've not head of the other one, I'll give it a read!

Andyhill,
there is no cure for AS at the moment. So no one can say there is ,be it "evidence based" or not. It can go into remission, not cured.

I use HUMIRA after checking the studies and assessing the risks - and it has been astounding how much it has helped. I, also, don't eat simple carbs (after checking what other people did who had similar symptoms to mine-I hadn't heard of AS when I started) This has helped even more than the HUMIRA. It was the only thing I could really do while I was ignored, dismissed, and treated like a hypochondriac by the medical establishment, for well over a decade. I was not diagnosed until I was 46. Even after getting the xrays and MRIs that showed inflammation and erosion destroying my SI joints to the point that I've developed a sitting disability. Why? because I'm a woman and it was understood that women didn't get AS. Oh and worse yet, I'm HLA B27 negative (The numbers quoted for HLA B27 positives are always for Caucasian males-that one gets annoying).

I've actually had an orthopedist, that I demanded a referral to a rheumy from, say that he wanted to send me to a neurologist because "rheumys don't really do anything".

I had no medical relief until I met my rheumy. Now, I have a hope for the future because she wants to know what I eat and how I live with this ailment-not just by going with the cookie cutter style of medicine promoted by the allopathic church of medicine.

Pezami,

I am aware there is no cure, I was referring to speaking of the NSD or antibiotics as if it were.

It's great that you're on Humira and isn't that evidence based medicine in action? You looked up the risks and the proven benefits and decided it was worth it - you based your decision on solid evidence.

I'm sorry you had a hard time getting diagnosed, I think nearly all of us have been there (including myself) and healthcare specialists seem fairly naive to AS in many cases, which is a shame because it is horribly under diagnosed. I admit I am an apologist for medicine as a whole but recognising AS is an area we struggle in and that does need to change. However, demonising all of medicine and medical research because medicine failed us is not the answer.

It's great your rheumatologist is so talented. Hollistic medicine is the future and it sounds like she's doing a great job.

I don't really know what else to say to you, the need for evidence for our claims is so important because otherwise the claims don't really mean anything. I hope that makes some sense.

My Arthritis Dr says there are a few articles being published in Medical Journals regarding the use of antibiotics helping in the fight against Arthritis. You have got to love opened minded Physicians.

Smed,

Yes there have, which is a great first step. However, it does depend on the arthritis and has yet to have been conclusively shown effective in AS - fingers crossed though, it'd be great if they work.

Hi Andyhill1991

I am someone who has yet to benefit from the advice on this site. I consider myself to be scientifically minded - meaning for example I understand the difference between proof and anecdote, and I believe that science (and not things like homoeopathy) is our best hope to discover effective treatments.

Yet there are a few things you need to acknowledge:

1. The gut, and the bacteria in it, is very poorly understood by medical science, and until very recently, wasn't getting the attention it deserves.
2. Some medical advances follow this pattern:
a. Eccentrics experiment on their own bodies to find something that helps for them.
b. They find something through years of dedicated trial and error - but are ridiculed by doctors.
c. Scientists take an interest in what they are doing, and sometimes find why it works (or in some cases only that it works, but not why). But new medicines are discovered in this way, and new accepted treatments are developed.

This has been the case since the first primitive man experimented with willow bark. Have you ever imagined how that came about? Willow bark does not strike me as an obvious thing to try for pain relief.
And even today pharmaceutical researchers still find new drugs by looking at traditional treatments that were invented by uneducated people.

These considerations, along with the incompetence of many doctors I have come across, make the idea that we should take what doctors say as gospel above all other forms of advice seem pretty silly.

Until such time that doctors have proper treatment for AS, I am willing to try anecdotal remedies that seem plausible to me, because my life is running out while you lot are not making progress. For me that means giving the NSD and/or antibiotics a proper try (maybe 1 year).

wordbeter,

I feel we may have gone a little off track here. I'll try and make my point clearer.

Of course everyone should be able to try whatever they think may work and it might even do so! If we find something new that works then great! Spread the word! I have no problem with that what so ever. It's not that you're posting what works for you so other can try it for themselves, it's the way some people are talking about it.

For example, there is no problem with telling people what worked for you as such;

"I found the NSD and antibiotics really helped, I know there's not a lot of evidence right now but I've heard a lot of people have benefited from it, I think people should try it"

Note the difference to this (which is paraphrased from a post I have actually read before on this site)

"The NSD is THE ONLY WAY to stop your AS! Don't take NSAIDs they give you bowel disease."

Now that sort of statement is troubling to me for two reasons; firstly its uncompromising, its exaggerating any proof we have the NSD works and secondly it's discouraging people from taking their prescribed treatments that may actually do some good.

This is the point I'm making here. Talk about what helps you, tell members on the site, tell doctors, tell you mail man, that's fine. But let us be clear and only state things as solid facts when we know they are true and have some real evidence, if its anecdotal or is speculative we need to use phrases like "what helps me" or "a lot of people seem to benefit from this". That's all I'm asking.

I hope that makes this clearer.

Andyhill1991:



1) I NEVER EVER said anything was "the cure" to AS! You should not try and play this game if You are not going to be honest; I resent having words put into my mouth and I hereby spit out YOUR LIES!

2) This is an INTERNET SITE, not a DOCTOR VISIT. Caveat emptor is more than merely implied: Most ADULTS and thoughtful individuals make up their own minds. I do not need to explain to people in each post that ..."What really helped me!" I do enough writing already--and paid my dues many times over--so stating what is absolutely obvious is a tedium I will leave to You: Follow my posts and post Your own commentary if You think people are interested in Your orientation (and I do not say this with the animus it seems--I welcome You especially because of Your medical background).

Our members do not come here because they have already had great success in treating their AS through allopathic methods and although I do not embrace "alternative" therapies, some have worked. And in fact Professor Ebringer is in the medical (and especially research) community, so he does not really like diet being considered alternative--for him and his group it is valid mainstream medical treatment.

And they come here for relief and to compare notes and for the friendship, also.

I would love every person with AS to find the level of relief I now enjoy, but find it much sooner than I did--to avoid the permanent skeletal damage I am stuck with. I am a dire warning (my Latin teacher always said that, "If You can not be a shining example, at least be a dire warning to others!")

And because I have found what works (for me and oh by the way MANY others), I admit total skepticism for any-thing else, especially when I have RESULTS and THEY do not!

HEALTH,
John

Dragon,
calm down a bit. You have to remember that Andyhill is a self admitted Med Student. He is in the middle of a classically designed trauma induction system. With long hours, poor diet, continuous pressures and psychological traumas along with "authority" figures assuring the med students that they are an elite group of people. Basically everything that cults use to control the view points of their members.

I have no doubt that his intentions are good and he wants to be a healer. I hope that once he leaves his training phase and enters his practicing phase, he will learn that the "evidence based" models of school work - don't work with the general population. Kind of like when dealing with engineers who "believe the books"-it's the people who actually work with the items, who then have to rig them up to be functional, that create a usable product instead of the formulas based designs of engineers.

For me there is only one true medical law at this time in history:

- Everyone is wired differently and will react differently to medicines/procedures or alternatives.

I'm kind of new around here, but I'm STOKED to see a medical student who understands AS first hand is spending time on a forum like this that focuses so much on alternative treatment methods.

Personally, I wish that the small army of doctors that I had to go through, before someone connected the AS dots for me, were as open minded as your presence here implies you are.

While I'm still holding out hope that full remission is something I can achieve with minimal side effects, all of my doctors have dismissed the idea. To have found a like-minded group of people here was a huge relief, despite all accounts being anecdotal at best.

In my mind, KickAS is a complimentary resource to my rheumatologist. Even though medical science clearly hasn't got a grip on how to handle ankylosing spondylitis, taking the posted suggestions of a stranger on an internet forum as gospel without applying some common sense to it reflects less on the stranger and more on the reader.

Thanks for the "stoked" flashback
There have been a few medical school students that I've known who have had AS-none, so far, have been able to complete med school. I hope that the OP will become the first that I learn of. That would be wonderful.

a couple (of the med students I know) are still slogging it out but find the unnecessary stresses that the system imposes upon med students cause flares and an increase of their symptoms, so, it has really slowed down their dream of becoming MDs. The system is really quite counterproductive. The others I've known, have turned their backs on allopathic medicine except for the treatment of traumas-broken legs, car accidents and such. They are natural born healers who find different ways to heal.

I'm sure there are MDs who have gone thru the system after being diagnosed, I just don't know of them personally. But, maybe with biologics and diet-there will be more forthcoming.

Hi again Andy

Leotrask is right - that you are, or can be an asset to the site.

But you should explain your scepticism in practical terms. Most of us here aim to be scientifically minded (including DragonSlayer).

The NSD people have the following:
1. Published articles in the form of the work of prof Ebringer and his colleagues.
2. A treatment strategy based on that, which have benefited many here on this forum.

I think you should explain why prof Ebringer's work is not accepted by some, and whether you have given it a proper try.

It might not be for Klebsiella or even for bacteria in the gut but this evidence is pretty compelling .
http://www.rheumatologynetwork.com/rheum...amp;ts=08072014

If you click on the 7th article reference underneath, it has the whole trial. Note the average disease duration time is 10 years.

I was negative in my comprehensive stool profile for klebs. One other user on kickas was positive. I'm very confused as to why different bacterial/parasitic/mycoplasmal infections can induce a similar response(AS symptoms) in different people. Does anyone know if klebs have ever been detected outside of the gut?

Hello CoatTails:

Regret a "negative" result for Kp does not mean there is no germ present, nor does it mean that a genetically susceptible individual will be free from even very severe AS symptoms. In our situation today--before commercial medicine has caught up with the medical science--our nemesis germ is not recognized as pathogenic until it causes bronchopneumonia and nothing in-between. So a "negative" result is just a statistical game that means a person has an average number of these germs, within 2 S.D. anyway.



Yes, in very diverse places. Once apparently within tissue associated with a case of plantar fasciitis related to AS, but this is not the issue with molecular mimicry; it is not the germ that causes AS directly, but our immune system reaction to the presence of the germ within our gut and myriad local lymph nodes: We produce the immunoglubulin IgA-Kp in response to this, which is the real agent provocateur in AS and travels through lymph to target collagens (I, III, IV, etc).

This germ is apparently responsible for the majority of "hospital-acquired infections." It is very genetically diverse, hearty and adaptive, and becoming harder to eliminate. You can study this very ancient enemy and understand that the greatest power the devil has is when his very existence is denied. Germs and evil are equivocated away, so it was in the days of Lister-Semmelweis, Dr. Barry Marshall, and especially today when we have thought-paralysis.

It is only a matter of time...

HEALTH,
John

After 13 years of being misdiagnosed and perscribed ineffective treatments by doctors, told it was in my head, told diet had nothing to do with my colitis symptoms, charged $1,000s for countless doctor appointments, specialists, physical therapy, natuorpaths, and tests, I realized there were no answers for me in the professional medical community. I finally stumbled across the SCD diet which gave me amazing results in overcoming my inflammatory bowel condition, but at this time I was still undiagnosed with AS.

Then I finally came across a thoughtful chiropractor who did some xrays which showed significant AS fusing in my SI and lumbar. The chiropractor suggested I try the low starch diet, which I had never heard of until that point, and I realized while I was already on SCD, I was practically on NSD, just needed to remove a few starchy foods like banana and squash. That same week, there years ago, I found this forum, and can't tell you how indebted I feel to everyone here, (especially DragonSlayer!!) for going out of their way to share their experiences that have truly led me to the best treatment I have yet to find for controlling my AS.

While modern medicine shuffled me out the door, the people on this forum embraced me and my first against this diseae.

A huge thank you too DragonSlayer for dedicating your free time to helping so many of us. While I may chose not to ever take antibiotics again for my body, I appreciate hearing how they may have worked for others. I love to come here and read about all the different approaches everyone is taking.

I still have compassion for the OP. Not just based upon his having AS but on how he doesn't see how his programming is already affecting his interaction with people.

Like on my posting about how I looked up the risks and benefits of biologics before choosing to try them and he accepted that as "evidence based" but he totally ignored my comments, on the same post, about looking up the risks and benefits of diet in regards to symptoms. And how the later had even greater benefits for me than the former.

I think that the most important aspect of AS health and understanding of the disease has come, not from the medicos but from Dr. Google and forums such as these. Before we were much more isolated and unable to even look up what the symptoms we are experiencing could possibly point to. Now, we at least have options and the very important personal experiences of others to learn from. This allows us the possibility to take some control back in our lives. Something that is significantly lacking in western medicine.

Given the rise of the TNF drugs and the soon to arrive il23 drugs I think it is safe to say that modern medicine is beginning to be very successful in treating most cases of AS and greatly diminishing its impact. A good thing since the diet has not worked for many on here or had limited impact as in my case. Hell even the board champion of the Diet, john, says he has seen the diet not work for a group of people no matter how hard they tried.

To each there own. It appears there are several good choices now and that is a great thing

Why does Kp show up + in one AS sufferer's stool test and not the other's?

I would love to see a test of some sort indicating kp's presence somewhere outside of the gut. It's obviously an issue but like Andy, I would like to see it on paper.

Why does one AS sufferer have an inflammatory reaction to one kind of starch(rice) but not to another(yams)... and vice versa? How/why could/would it possibly make that decision in different people? I completely agree with Timo's point that everyone is wired differently but it's very hard for me to wrap my head around kp's inability/unwillingness to adapt or change it's form of starch consumption. Rice is rice. Why does kp care who's body it's in?

I ask these questions not to oppose anyone or for any motive other than finding the closest thing we can get to correct opinions or answers.

I second Betty's appreciation regarding your time and energy dedicated to helping others, Dragon Slayer. Thank you.

Hi, CoatTails:



Regret there was a very flawed paper, bordering on scientific fraud, wherein the DOE (Design of Experiment) included testing ACTIVE and INACTIVE AS patients.

This is of course totally contrary to the rigorous application of molecular mimicry and the proposed concept of diet related to AS activity. But it underscores the certainty that even those who are well-paid to know the science behind what they are studying are sometimes just too ignorant to be trusted. And if researchers at this level can get it so wrong, where does that leave the poor rheumatologist (who only has time to read the abstract and conclusion) and especially the patients who are not usually even as (mis-)informed as the physicians upon whom they rely.



This is a relatively easy question to answer in general, but these answers might not apply to every observation: Within the AS community, some have insidious-onset and others an acute event (like post- salmonellosis, shigellosis, or Reiter's, etc). And a subsection of both groups have dysbiosis. But You can see the variation that occurs through just a few steps within a simple binary-restricted exponential; the differences in AS patients are expected and not surprising.

And Thank You each for understanding my passion about this topic--AS can and should be eliminated; life is difficult enough without this cruel disease.

HEALTH,
John

It isn't just a single paper that has found AS patients with active disease without any klebsiella in stool tests, there are many different studies that report this that I pointed out to you here - https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=467652#Post467652

Please do not accuse researchers of being ignorant and untrustworthy when you yourself have admitted that you are not familiar with the research as you don't see any reason to be because it is outside your field of interest.

As Ebringer's hero Karl Popper once said: "True ignorance is not the absence of knowledge, but the refusal to acquire it." - http://en.wikiquote.org/wiki/Karl_Popper

And AGAIN, jroc:

You cannot have a "negative" result for Kp; there MUST be a quantity an actual assay number.

And once AGAIN, simply stated: A person genetically susceptible to AS can do things with much less Kp than a person who is immune.

This stuff is so basic to the tenets of molecular mimicry that is is amazing You cannot find the flaws with the scientific-looking papers You promote.

I have acquired remission. THAT is the limit of my knowledge; all discussion after this is a kind of mental [manipulation...] that in no way interests me (when there is a Jaguar in this parking lot).

Here's something we seem to agree upon: You refuse to learn enough about molecular mimicry to further Your side of the debate, ergo I will likewise ignore the so well-crafted papers You reference, along with B.S. from the peanut penumbra about ONE MORE of the over 400 cytokines involved in AS and some hopey-changey FUTURE therapy: The future is NOW.

HEALTH,
John

What do you mean you cannot have a negative result? If the bacteria isn't able to to be be cultured and detected using the methods outlined in the studies then the result is negative. By your logic if you tested a sterilised needle for tuberculosis, it can't contain no tuberculosis, there has to be a quantity of tuberculosis. That is ridiculous.


I don't agree with that at all. I'd be happy to learn more about molecular mimicry if you have any new or interesting information about it. However I am already familiar with Ebringer's work and his newer papers seem to only reference his older experiments which many independent groups have already failed to replicate (except the LSD study, that has never been replicated to my knowledge).


Good for you, but why do you continue to you expand far beyond the limits of your knowledge to making ridiculous statements such as "... the science really is finished; just waiting for the medical guilds to catch up." I think that is the type of thing that Andy was talking about when he started this thread.

I struggle to understand why you respond in this way jroc. Anyone, including you, must be aware that a sterilised needle can be fully sterile, while the gut is a natural habitat for bacteria, containing billions of them, and hundreds of types.

We are also exposed to bacteria through our environment and food, including to Kp. With that being the case, a needle can be completely Kp free, but a human can likely not be.

Ok, thanks for all the replies, lively conversation as ever; good to see. I understand why posts can get very heated, after all we are all passionate about this and want the best for the members here. I hope I haven't offended anyone;

I think this should be my final post on the matter;

I appreciate what I represent in this forum; the doctors who missed the diagnosis, who wouldn't refer you, who thought you were lying about the pain, who sent you away with nothing but questions. In modern medicine, there is little excuse for such things and I hope they become less frequent.
That being said, there is a case here for "don't throw the baby out with the bathwater".

Maybe it's the role I'm in and the career I've chosen but clear scientific evidence is really very important to me when I make medical choices for myself and I think all of you would be horrified if your doctor / nurse / physiotherapist gave you advice with nothing to back it up with.

I also think you would be horrified if that person neglected to tell you other things to try that may have a little more proof, like exercise and conventional therapies like NSAIDs and Anti -TNF agents.

Treatments, pretty much no matter what, have side effects and consequences. For example, Antibiotics have a list of possible side effects as long as my arm, some fatal (like severe allergic reaction). My point is advising a group of people to take a medication on a leap of faith is not only misleading but can also be dangerous. I know to some the fact that they benefited proves a treatment works but until you have some decent studies to back that up with your advise is moot if not irresponsible.

So finally;

Please, let's be clear. If a treatment we are suggesting is not yet proven or supported and carries risks, we should really say so people can make the best treatment choices for themselves. I don't think that's too much to ask.

Thanks everyone, I know not all of you will agree but I hope it's some food for thought on the way we advise members on the forum.

Hi Andy, over the years there have been some members here who are doctors and have AS. It was nice to have them and they are truly missed. Some members tend to forget that there really are doctors, health care professionals, insurance industry or pharmacists that actually are humans too and in need of support. I miss those health care professionals whose knowledge and opinions were valued but who have left this forum due to disrespectful bashing of their profession or preference for science based research. Being programmed into an elite cult??????? I sure hope you have the patience to stick around here where most people share compassion for those with AS!

wonderfully put....as ever.

The oil this thread was beginning to need

Hmm....how to put this.
People here are in pain and a lot of the time have little idea of what is happening to them. That was me a long time ago certainly.
The bashing I feel comes from not being able to get a simple answer to our physical dilemma.
We all wish our doctors can say "Hey, you have a broken arm. We can fix that right away." When that doesn't happen frustration comes out and that's when we see those comments. It's certainly not any doctor's fault there isn't a "broken arm" fix found yesterday.
I think something will come around for us to help us with our AS in the near future so I'm staying positive.