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Is there a certain protocol that is best for Ankylosing Spondylitis? Most of what I’ve read has to do with RA. Does this work on Ankylosing Spondylitis? I know they are different and I had some trouble finding references to it. I would love any stories or feed back on it.
I think there’s a forum totally dedicated to treating AS with antibiotics and other methods, KickAS.org. There’s a member on here called “The Dragon Slayer”, who I believe runs the site. Maz will know and will have more info when she sees your post.
From what I’ve read the antibiotic protocol is pretty much the same for RA and AS.
I have RA, I was diagnosed in 2013. I was prescribed 100mg of Minocin three times per week for a year. I reached remission & have remained that way since.Hi again Hopescut!
Lemons is right…the http://www.kickas.org website was set up to provide info to folks with AS, primarily research-sharing, diet (and fasting) info and I think there is some info on that site about antibiotic therapy. Dr. Brown believed all rheumatic diseases could be treated as having an infectious cause and I’d highly recommend reading, “The New Arthritis Breakthrough,” by Henry Scammell. It also contains Dr. Brown’s original book, “The Road Back.” There are patient stories in there of folks with AS and PsA and other reactive arthritides. It’s a commonly-held misconception that Dr. Brown only used a tetracycline antibiotic, but this isn’t accurate. He saw many patients with long-standing disease who had failed the conventional treatments of the times, and he tested for a number of common infections and treated these patients with a number of different classes of antibiotics, accordingly – sometimes with just a penicillin or with combination antibiotic protocols.
Although the basic protocol (minocycline titrated to patient tolerance – there is a chapter on this in the Scammell book) is a good place ask your doctor to start, getting some baseline infection testing can help him/her to design you an individualized protocol, if this is your desired course. This is because there are a number of bugs in the scientific literature that are correlated with the reactive arthritides, such as AS, including mycoplasma, strep, ureplasma urealytcum, klebsiella pneumoniae, Lyme disease, E-coli, Yersinia enterocolitica, staph, shigella, salmonella, campylobacter, mycobacterium avium paratuberculosis, etc., etc.
As mentioned on the Kickas.org website, Dr. Alan Ebringer believes that Klebsiella pneumoniae is the primary causative pathogen and I gather that the kickas website is mostly focused on this bug and Proteus mirabilis (causes UTIs).
DEFINITION OF THE PROBLEM: THE LINK BETWEEN KLEBSIELLA AND ANKYLOSING SPONDYLITIS
However, on a different website (www.CpN.org), various physician-researchers believe that the chlamydias (c. pneumoniae and c. trachomatis) are the likely contenders for numerous autoimmune diseases. So it can be a bit of a puzzle to work out which bug is the biggest problem in every case and it’s even possible that there are numerous bugs co-existing and conferring survival upon one another. For instance, a person might have an overgrowth of K. pneumoniae in the gut, but then gets a tick bite that passes Lyme disease, and it’s the last apple to tip the apple cart. The bugs live in biofilm colonies and while these colonies can be somewhat protective while the bugs are holed up in this sticky matrix, there may be a dominant bug in the colony causing all the trouble, but minor bugs shielding it. Human cells are outnumbered by bugs in and on the body by 10:1, so you could say we are more bug than human. This makes narrowing down the field a tricky business!
Here is a link to the CpN antibiotic protocols of the various physician-researcher proponents of the Chlamydia-autoimmune theory:
In regards to this bug, a Florida rheumatologist ran studies on antibiotic therapy combinations for undifferentiated spondylarthropy due to Chlamydia.
So, am sure you get the picture! Brown studied mycoplasma primarily, Ebringer, K. pneumoniae, and Wheldon, Sriram, and Stratton believe the chlamydias are strong contenders. So, there are several possible routes to take with treatment, as far as I (just a fellow patient) can best outline.
1. Begin treating with a basic antibiotic protocol (doxycycline or minocycline with the possible addition of IV clindamycin at intervals, as described in the Pulsed Antibiotic Protocols packet under the Resources tab above)
2. See an experienced AP doc and ask for them to test you for the organisms above and design you an individualized protocol based on those results
3. Consider talking about a broad spectrum protocol with your doc, such as the ones described on the CpnHelp website (link above) and the Carter Study (link also above).
As a final resource (as I may have already overwhelmed you with stuff to read!), here is a rather long PDF article with numerous case studies and various suggestions for treatment modalities for AS from the Arthritis Trust. The Arthritis Trust also adheres to infectious theory and the site outlines the Roger Wyburn-Mason and Jack M. Blount antibiotic protocols:
Ankylosing Spondilitis By Anthony di Fabio The Roger Wyburn-Mason and Jack M. Blount Foundation for the Eradication of Rheumatoid Disease
Last thought – the antibiotics used for AS, if you gather up all the research above are: doxycycline/minocycline/clindamycin, tinidazole/metronidazole, rifampin, and/or clarithromycin/azithromycin. These can be prescribed by any doctor, but if pursuing a combination protocol (see Debbie’s AS Story – she used both minocycline and flagyl), it helps to be working with an experienced doctor who understands the need for a broad spectrum approach (to target the various pleomorphisms of certain bugs and to prevent resistance issues) and to ensure appropriate use of various combinations/doses.
Hope this helps in your researches as you move ahead with making informed treatment choices, Hope! Do you have an experienced antibiotic protocol doc to work with?
how bad is your disease? do you take NSAID?
try to stay away from tnf blocker if possible. Abx may not sure AS but may slow it down.
Thank you so much for the info! This does help a lot. I saw my Rhuemetologist on Friday and she prescribed me 4 weeks of the Minocycline because I wanted it (actually I wanted 6 but she said that’s what they use for lymes) but acted like I was a moron and went through sections of the material criticizing it and saying it was wrong. I’m deciding on what to do, whether to get my primary care doctor involved or trying to find someone who’s knowledgeable on the AP protocol.
I really don’t know how bad my disease is @worldofme. I’ve had low back pain for 8ish years but it’s never been horrible. It goes in spurts and I’ve always racked it up to my family having bad backs. I’ve managed it with NSAID’s on and off but never more than here and there. I did take CBD oil for 4 months and could tell a huge difference. My Rhuemy told me nothing had fused yet but that I had a lot of damage on my SI joint and would always have some pain. I don’t want to go on the TNF blockers because of the side effects, which my Rhuemy basically said was only infection which she had seen very little of on the one she wants to put me on. I know there are more, like increasing your risk of cancer etc. I’m willing to go on them but prefer it as a last resort to stopping the progression.
you might want to check out spondalytitis forum. It’s a great forum with lot of resource on AS, especially if you decided to take the route of tnf.
like my infection disease doc said why not take both?
antibiotics if it helps and tnf. My doc an id said tnf are not that bad since they don’t shut the entire immune system like prednisone or mtx. it’s very specific.
which tnf does your rheum want you to take?
I took humira for 3 months. it sure helped the spine and rib cage area. it’s like the pain went away over night. However, I had to stop since humira caused shortness of breath.
you should try enbrel first before doing humira.
take both, that would be my suggestion. Fact, there is a on going trial about taking tnf and abx (bactrim) to prevent infection as precaution.
AS once trigger never goes way regardless what started.
how is your heart? eyes?
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