Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group discussion with DragonSlayer (DO NOT READ!)

... continued from here


i didn't claim that however i think it is true that modern science does not have very effective treatment answers for people with AS however that doesn't give anyone carte blanche to claim that their own implausible theories or treatments are equally valid. a disease pathogenesis that can accurately account for all aspects of the disease is not currently known although plenty of progess has been made in recent times and many think that it will not be too far into the future the picture will be a lot clearer. i agree with you that the current pharmaceuticals available to treat AS are not very good, do not treat the root cause of the disease and that more research should go into understanding how dietary and lifestyle factors influence the disease. there is no need to cling on for grim death to Ebringer's theories in order to justify using diet as part of a treatment strategy for AS. there is plenty of legitimate scientific evidence that suggests that diet would be an important consideration given the involvement of gut bacteria and intestinal inflammation. there are plenty of people with science backgrounds (drizzit, davidP & inkyfingers spring to mind) who don't believe in all of Ebringer's theories who still do NSD.


the role of antibiotics in the treatment of chronic ReA has been thoroughly investigated. if you read HLA-B27-Associated Reactive Arthritis: Pathogenic and Clinical Considerations you would see that the authors view that "neither short-term nor long-term antibacterial treatment of enteric infection-related ReA has a place in the management of this disorder" is based on reviewing the many double blind placebo controlled trials that have been conducted with several different antibiotics involving thousands of patients with ReA. i would be interested to know why anybody should consider your knowledge of the efficacy of antibiotics in the treatment of chronic ReA to be more accurate and reliable than a meta-analysis of double blind placebo controlled trials involving thousands of patients.

but perhaps a fraction too much friction

i do agree to disagree. my beliefs are consistent with modern science because it one of the main (although not the only) source of information that i use to arrive at them. i read all of the evidence, take into consideration any biases that different information sources may have, try to be aware of any personal biases i may have, evaluate the evidence in order to arrive at an informed opinion, and then revise and re-evaluate my position as new evidence emerges.

you use a different method. you say that you did not trust Ebringer at first but "proved his hypothesis for yourself". it is my understanding (and please correct me if i am wrong as i'm not familiar with the whole story) that this was done through experiments with antibiotics (as diet was initially unsuccessful), some form of NSD as well as chelation therapy. there is no doubt that this experience would make anyone take Ebringer's theories more seriously but there are plenty of other explanations that could account for this. it does suggest that those type of interventions may be useful to some people with AS but it is certainly not proof of any underlying mechanism and implying that it is conclusive proof and then extrapolating it to all others with the disease, and even other diseases is a giant leap of faith. you say that you have been in remission for the last 14 years due to NSD + antibiotics and claim that "At this stage of my healing (14 years into NSD+antibiotics), no starches affect me anymore" and yet still follow NSD despite referring to it as "one of the most inconvenient diets possible".

i realise that in your case the forces of confirmation bias, attributional bias, and need to defend a set of narrow beliefs in order to maintain a stable internal environment of certainty and control are overwhelmingly powerful. these are fortunately very normal and common human traits and are well known to psychologists.

i think that everyone is entitled to choose whatever beliefs they please. problems only arise when those beliefs cause potential harm to others. i don't think suggesting that people experiment with LSD or NSD in any way falls into this category. this line is crossed when you start talking nonsense about things like NSD working miracles for anyone with PsA, calcium deficiency causing depression, oranges causing kidney stones, doctors and scientists are frauds etc. i am only the last in a very long line of people (most of whom have left the site in disgust) that have noticed this problem. in the infamous fasting thread colin(tiredofpain) hit the nail on the head when he pointed out that "The problem is that John isn't simply offering or suggesting advice. It is filled with insults and comes across to those who may dare to disagree as an attempt to bully them into acquiescence. For someone in a vulnerable state of mind - his posts and his bizarre opinions could be dangerous." drizzit also made an insightful observation - "there is a reason why John often gets in battles here and on the SAA board. Yet he always blames others rather than looks inward. He seems to be the one common ingredient in both places. Frankly his style of posting and overall attitude that comes across in his postings just rubs people the wrong way for a variety of reasons."

i think it would be beneficial for everyone if you cut back on the bizarre and unsubstantiated stuff and concentrate on what you are knowledgeable about, what you have significant experience in, and what will help others such as informing people of the scientific trial of LSD for AS, and the success stories of many kickAS members and others that have contacted you. if you simply did this in a polite manner then you wouldn't be repeatedly involved in misunderstandings. unfortunately you seem always revert to pushing the envelope and crossing the line and so people like me have to constantly battle to keep you in check.

in the fasting thread you said "I will make something VERY CLEAR: If anyone comes up with an effective method for eliminating AS, or even a better method than Ebringer's, we will immediately overthrow Ebringer for the new guy. And as much as I like Alan Ebringer, I would LOVE an easier answer for AS!"

Ebringer's method is to reduce Bread, Potatoes, Chips, Rice, Spaghetti, Cereals, Cakes, Biscuits and increase Red Meat, White Meat, Fish, Beans & Peas, Nuts, Vegetables & Salads, Milk, Fruit.

to be honest i don't think he has set the bar very high. i think that if the knowledge of the people on this site was pooled together that we could come up with some sort of protocol that would be better than Ebringer's protocol. it could involve using nutritional science insights into functional foods and how they affect gut bacteria and inflammatory pathways in the gut such as NF-kappaB and Cox-2. vitamin D supplementation and other vitamins that can attenuate inflammatory pathways in AS such as TLR4 expression. even add in some 'alternative' treatments that have been tested by "modern science" such as boswellia and circumin as anti-inflammatories or peppermint oil for those with IBS. and since the focus would not be limited in scope to starch restriction, other lifestyle factors could be explored such as the role of exercise on testosterone and Il-10 expression, the effect of sleep on inflammatory markers etc. and there would be no need for any hard and fast rules as we all know that everyone with AS has unique genes and a unique gut bacteria and responds to treatments differently. one can only imagine.