Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A call for evidence based recommendations.

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.