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Juvenile AS put in remission with antibiotics
#244318 11/22/12 05:01 PM
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My son was diagnosed at 10. After abdominal surgery & IV cephalosporin, he was sent home with 7 days of Keflex.
His AS went into remission (no stiffness,no pain) for 3 months!
I did research on the web about certain antibiotics that crossed the cellular wall... Printed out my research & approached his Ped & Rheumy. They gave him 3 days of Keflex & he went into remission for 2wks.
He remained on Keflex 250mg twice a day for 5 years. His remission tapered off at the 5 yr mark that's why we stopped.
The literature said to alternate antibiotics to keep the effect going.
At age 20, his rheumy said that he surprisingly had little to no damage for his age.
In recent years, they have linked the bacteria Klebseilla to AS.


Married to a wonderful man 23yrs, w/ a terrific son diagnosed with AS.

Acquired AS 28yrs ago. Severe Fibromyalgia, Migraines, Multiple system involvement: heart, remaining kidney (no nsaid's allowed), spine (+ spinal stenosis), neck, knees (Rcd total Rht knee replacement 7/13, Lft scheduled for 9/13), thyroid, etc... Medically retired from US Military.
Now recently diagnosed w/ Primary Hypogammaglobulemia to boot!
Re: Juvenile AS put in remission with antibiotics
Gidget101 #244380 11/24/12 05:46 AM
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I am glad to hear that your son is doing well. It is interesting that you believe that antibiotics are responsible for his remission. Unfortunately, there is no credible scientific evidence that indicates that antibiotics are effective in treating Ankylosing Spondylitis or the other Spondyloarthropathies. At best, some antibiotics (including Keflex) have a mild anti-inflammatory effect. Juvenile Spondyloarthropathies often go in and out of remission. A long term, or "durable" remission is common even without treatment.

His Rheumatologist's comment about damage is curious. Most 20 year olds with confirmed Spondyloarthropathy have very little to no radiographic damage. It IS very odd that he had enough damage to fulfill the diagnostic criteria for Juvenile AS at 10, but little to no damage at 20. That would indicate to me that he may have been misdiagnosed or overly-aggressively diagnosed initially. Damage does not reverse or go away regardless of treatment.

A confirmed diagnosis of Juvenile Ankylosing Spondylitis is very rare. The diagnostic criteria requires that the child meet the Modified NY Criteria of bilateral grade 2 (or unilateral grade 3) sacroiliitis. MOST children with Spondyloarthropathy do not meet that criteria in childhood. They are therefore diagnosed with Juvenile Spondyloarthropathy or Enthesitis Related Arthritis instead of AS. These kids may eventually go on to develop full blown Ankylosing Spondylitis.

Originally Posted By: Gidget101
In recent years, they have linked the bacteria Klebseilla to AS.

The klebseilla theory was brought forward by Dr Alan Ebringer over 30 years ago. Independent of Dr Ebringer, scientific researchers have been unable to reproduce Ebringer's results. Although there may be a link between AS and kiebseilla, that theory has yet to be proven to the satisfaction of the scientific or medical communities.


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Re: Juvenile AS put in remission with antibiotics
Gidget101 #244401 11/25/12 04:44 AM
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*Just to clarify:
Antibiotics are used to treat the underlying infection in Reiter's Syndrome/Reactive Arthritis. This addresses the infection causing the arthritis, not the arthritis itself.


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Re: Juvenile AS put in remission with antibiotics
NotMeToo #244590 11/29/12 02:18 PM
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@NotMeToo

Your information to the poster is inaccurate - the role of bacteria in Autoimmune is the main and in some degree the only path that is being studied. The question is what bacteria and the exact mecahnism!

I sometimes think that this was Ebringer right or wrong, is it Molecular Mimicry or some other pathway - acts a single point of focus that it unhelpful.

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. To suggest that anyone has completely disproved is disingenuous to say the least.

See following research and you might see a pattern emerging that will change you advice in future -

Molecular mimicry between human leukocyte antigen B27 and klebsiella (done in 1988 by others - not Ebringer)

http://www.sciencedirect.com/science/article/pii/0002934388903853

Could not prove Molecular Mimicry - but concludes that the occurrence of reactive arthritis in HLAB27
positive subjects clearly shows that there is a correlation between the B27 antigen and
reactivity to bacteria. (done in 1992)


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1004747/pdf/annrheumd00469-0083.pdf[/url]


Big study into Salmonella typhimurium bacteria (another starch feeding gram negative bacteria 2009)


http://rheumatology.oxfordjournals.org/content/early/2009/05/19/rheumatology.kep113.full.pdf


Molecular mimicry and ankylosing spondylitis: possible role of a novel sequence in pullulanase of Klebsiella pneumoniae.

http://www.ncbi.nlm.nih.gov/pubmed/7649265


Rheumatoid arthritis, Proteus, anti-CCP antibodies and Karl Popper. (2010)

http://www.ncbi.nlm.nih.gov/pubmed/19895906


Post Streptococcal Syndromes, A Rheumatologist Perspective

http://www.ispub.com/journal/the-interne...h.yrwcDPZX.dpbs


Psoriasis--as an autoimmune disease caused by molecular mimicry. (2009)

http://www.ncbi.nlm.nih.gov/pubmed/19781993

+ All of the research in to an bacterial autoimmune role for Multiple Sclerosis
+ Role of Streptococcus for Autism

Last edited by SeanP; 11/29/12 03:19 PM.

Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html
Re: Juvenile AS put in remission with antibiotics
Gidget101 #244620 11/29/12 11:09 PM
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Originally Posted By: SeanP
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.

Originally Posted By: SeanP
- 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.

Originally Posted By: SeanP
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.

Originally Posted By: SeanP
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.

Originally Posted By: SeanP
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.


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Re: Juvenile AS put in remission with antibiotics
Gidget101 #244621 11/30/12 12:21 AM
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Notmetoo

Are there others on this site that have given the antibiotic properties of sulphasalazine as part of their treatment. My reply was regarding antibiotics against bacteria - not really about diet.

I did not say that I would subject an advanced case or extreme case of JIA to a diet only regime - that would be ridiculous. What i have seen are forum posters in the uk say that initial non critical conditions have been treated in the first instance with Methodrexate. I will find the links if you would like to read the concerns of the parents.

Of course all onsets of arthritis have to be treated based on severity - and considering I cited an example that just focused on a non critical condition - you have changed my point as if I would leave children in wheelchairs and blinded by the sun. No, no I have not said that.

Gidget101's initial post did not seem to express the type of conditions you have described - and if there has been remission and no rapid onset of conditions then - why not try a dietary approach.

I am not disputing whether these mainstream medical treatments work - as they surely do for a while.

The reason I confuse my own regime is that I believe the NSD to be wrong in its support of all beverages being fine. Are there any NSD followers to back up this belief.

I agree there are more factors than molecular mimicry at play - but I would stand by diet / food allergy included and nutrition as the major influence.

I have more faith in US Medicare to start to sort out the spiralling profits and practices towards prevention rather than our treatment of symptoms than I do our spineless NHS - there is so much money wasted whether is it property management, outsourcing let alone the interplay of power asserted by pharma -

http://www.guardian.co.uk/commentisfree/2012/apr/24/suing-nhs-cheap-blindness-drugs-novartis

I am not arrogant and I am not irresponsible - I care deeply. I have felt the pain and I have seen my father suffer.


Last edited by SeanP; 11/30/12 12:29 AM.

Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html
Re: Juvenile AS put in remission with antibiotics
NotMeToo #244622 11/30/12 12:34 AM
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Quote:
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.

There was one study on AS patients treated with amoxifloxacin - http://journals.lww.com/smajournalonline...tis_with.9.aspx
The results seem to indicate more than simply a mild anti-inflammatory effect
- average ESR from 57 to 16
- average CRP from 42 to 8
- disease activity index from 59 to 16

Re: Juvenile AS put in remission with antibiotics
butters #244628 11/30/12 04:22 AM
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butters, thanks for linking that study. As a pilot study, it is certainly a start in the right direction of a full scale study. As you know, it was a 12 week trial in which 76 adult AS patients were all given amoxifloxacin. It certainly showed good preliminary results. However, the relatively few participants, short duration, and lack of a control group make it impossible to draw a meaningful conclusion. As the study authors said, further study is needed. "We conclude that randomized controlled trials with a longer treatment period are needed to confirm and establish whether moxifloxacin is effective to treat active AS patients." But again, it is a good start.


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Re: Juvenile AS put in remission with antibiotics
SeanP #244629 11/30/12 04:59 AM
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Originally Posted By: SeanP
I did not say that I would subject an advanced case or extreme case of JIA to a diet only regime - that would be ridiculous.
I think you have a basic misunderstanding of the term Juvenile Ankylosing Spondylitis. By definition, kids with this diagnosis do in fact have severe cases. Children with less severe disease progression do not meet the diagnostic criteria for Juvenile Ankylosing Spondylitis. Children with Spondyloarthropathy symptoms that do not meet the Modified NY Criteria are instead diagnosed with Juvenile Spondyloarthropathy or Enthesitis Related Arthritis. JIA (Juvenile Idiopathic Arthritis), formerly known as JRA (Juvenile Rheumatoid Arthritis) is a different beast altogether.

Originally Posted By: SeanP
Of course all onsets of arthritis have to be treated based on severity - and considering I cited an example that just focused on a non critical condition - you have changed my point as if I would leave children in wheelchairs and blinded by the sun. No, no I have not said that.
I have not changed your point. You are intermingling the terminology as if there is no difference. JAS is not the same as JSpA is not the same as JIA. I live every day with kids with JSpA and one with JAS. There is an enormous difference.

Originally Posted By: SeanP
Gidget101's initial post did not seem to express the type of conditions you have described
And that is exactly why I expressed the belief that her child may well have been misdiagnosed or overly aggressively diagnosed. As I am sure you know, damage (required for a JAS diagnosis) does not reverse itself regardless of treatment or lack of treatment. If he has "little to no damage" at 20, then he had "little to no damage" at 10. If those things are true, the JAS diagnosis could not have been accurate.

Originally Posted By: SeanP
I am not arrogant and I am not irresponsible - I care deeply.
I am sure that you mean well and that you do care - as do I. Let's just call it a failure to communicate in the same language.

Last edited by NotMeToo; 11/30/12 05:06 AM. Reason: correct/add information

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