Your information to the poster is inaccurate
No, my information was not inaccurate. It is absolutely accurate to say that "there is no credible scientific evidence that indicates that antibiotics are effective in treating Ankylosing Spondylitis". There simply are no studies that indicate that antibiotics do anything to treat arthritis beyond having a mild anti-inflammatory effect. Antibiotics, if started early, are used to treat the infection causing Reiter's Syndrome. Although Reiter's Syndrome is considered a Spondyloarthropathy, it is not Ankylosing Spondylitis.
JUVENILE Ankylosing Spondylitis is a very specific disease that is diagnosed based on very specific diagnostic criteria. Children that suffer from Juvenile Ankylosing Spondylitis have very significant disease progression at unusually early ages. While the prognosis for kids with Juvenile Spondyloarthropathy or Enthesitis Related Arthritis is generally good, the prognosis for kids with Juvenile Ankylosing Spondylitis is much less optimistic. These children do not just have "sore knees" as you indicated in another post. These children have significant systemic inflammation that has the potential to cripple, blind, stunt their growth, harm their internal organs,or otherwise devastate their lives. Their inflammation needs to be brought under control so that they can grow and develop in a normal way. Suggesting that their parents or physicians should proceed slowly through dietary restriction, antibiotics, or other unproven (and to children potentially dangerous) methods before proceeding to proven treatments is nothing short of IRRESPONSIBLE.
Ebringer's klebsiella theory is not established scientific fact. It is still an unproven and largely untested theory. Alan Ebringer's work is not highly regarded in the scientific and medical community. Ebringer is no longer listed as being on staff (or even emeritus) at King's College. Ebringer, his theories, or his supposed "success" are not mentioned as accomplishments on the King's College web site - either in their history section or anywhere else. The highly touted (on the KickAS site anyway) "AS Clinic" at King's College was defunded and closed by the NHS several years ago. None of these things scream of Dr Ebringer's "success". Before you head down the road of "big bad big-Pharma" suppressing natural remedies or research into "cheap" generic drugs, keep in mind that countries, like the UK, with National Health Services would LOVE to find inexpensive alternatives to treat these diseases.
- the role of bacteria in Autoimmune is the main and in some degree the only path that is being studied.
Really? You should inform the US National Institutes of Health of that. They list numerous clinical trials for Ankylosing Spondylitis, Rheumatoid Arthritis, and other Auto-immune diseases that have absolutely nothing to do with the role of bacteria in these disorders.
My own view is that based on my own experience that his research is on the right track and is and will be further refined - but not completely disproved.
Ebringer's initial research is more then 30 years old. I would think that it would be further along the path of being proven if, in fact, it was going to be. From reading your posts on this web site, I do not have the impression that you have Juvenile Ankylosing Spondylitis. Since you were so dismissive of the suffering of children with this disease in an earlier post, I do not believe that you have children with Juvenile Ankylosing Spondylitis either. What experience do you have that is relevant?
Have you ever pushed your child through a theme park in a wheelchair because they are simply unable to walk that much or that far?
Have you ever watched your child turn their bedroom (or the entire house) into a dark cave because they simply can not handle the natural light coming in through the windows?
Have you had to research legal educational accommodations available to your child so that your straight A honors student can stay in school, graduate on time, and receive an appropriately challenging education?
Have you ever had to watch your athletic, active child struggle to get out of bed in the morning because the pain and fatigue are just too much?
Have you ever had to explain to your sports-crazed kid that he can not go out for the team for the sport he loves most in the world because his extreme levels of joint inflammation put him at risk of a permanent injury?
Have you ever had to explain all the positives and all the negatives of all the treatments available (diet, antibiotics, acupuncture, hypnosis, PT, OT, Aquatic PT, NSAIDs, DMARDs, Biologics, etc) to your teenager and then help him/her make a decision that best meets their needs and long term best interests?
No? Perhaps your "experience" isn't as extensive or relevant as you believe. I have had to do all of these things - and so much more.
To suggest that anyone has completely disproved is disingenuous to say the least.
I agree with you. That is why I NEVER suggested that. Ebringer's theories have not been actively, definitively disproven. That does not make them accurate.
See following research and you might see a pattern emerging that will change you advice in future -
Thanks! Nothing that you linked changes the facts that antibiotics have no proven role in treating AS or that Ebringer's klebsiella theory is anything but a theory - without much weight behind it. I read enormous amounts of scientific and medical research every week. I am an extraordinarily well informed patient and parent. Since I am open to learning about alternatives (and yes, my family practices some forms of alternative as well as traditional medicine) I read these studies with an open mind. I would love to find a simple, easy, natural solution to my and my children's health concerns. Unfortunately, that solution is not yet apparent in any of the research. Since you obviously have firmly held opinions that klebsiella and molecular mimicry are the problem and diet is the answer, you are not reading the available research with an open mind. Your statement that you "confuse my own regime with the original NSD" speaks volumes. As an adult, you are obviously free to treat your condition however you see fit. However is is unbelievably arrogant and utterly irresponsible for you to advise, criticize, or try to influence parents on the treatment of their children based on unproven theories and assumptions.