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Re: Potential "Patch" for AS
dan321 #283174 06/01/19 07:25 PM
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Originally Posted by dan321
Keep us in the loop of how it's going. Btw I'm surprised there's only one person on Kickas.org who tried Rifaximin! That forum has a long history with many of the members posting about their various experimental treatments.


They tried Rifaximin under sheer luck because that was prescribed by the doc. However, the other member who claims (in replies later on down the chain) that Rifaximin is "perfect for AS," likely due to the many things I've already mentioned, must have had many others who have had experience with it but never make it to the forums to post (my logical deduction.)

To address why the large groups of people on kickas.org hadn't tried Rifaximin yet either, well that's because the study was just released this year that indicated it's a fantastic drug for this use-case. I doubt many people read as many medical journals as I do per week either. I am CONSTANTLY looking for answers and updating myself, something that many medical docs should do...but do not. I even read an article written about medicine recently where someone literally said the exact same thing, so I at least felt like I wasn't the only one perceiving the medical field this way.

I really hope this post can open peoples' eyes to the possibilities out there that are being developed in understanding how the microbiome really is at the root of a lot of problems, including ones that might seem completely unrelated.

Re: Potential "Patch" for AS
PainintheAS #283175 06/01/19 09:37 PM
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Actually it seems there have been a handful of threads about Rifaximin on this forum but you just have to go back several years.

Here a discussion thread on it spawned because of a study about its potential use for treating Crohns, although it seems no one had tried it first-hand:
http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=75506&Searchpage=1&Main=7549&Words=%2Brifaximin&Search=true#Post75506

On this thread one person says "my GI tried it on me about 5 years ago before Humira was approved and I reacted to remicade, I was on a liquid diet at that point, sadly it did not work for me. "
http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=190046&Searchpage=1&Main=17594&Words=%2Brifaximin&Search=true#Post190046

Re: Potential "Patch" for AS
dan321 #283180 06/02/19 08:20 AM
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Originally Posted by dan321
Actually it seems there have been a handful of threads about Rifaximin on this forum but you just have to go back several years.

Here a discussion thread on it spawned because of a study about its potential use for treating Crohns, although it seems no one had tried it first-hand:
http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=75506&Searchpage=1&Main=7549&Words=%2Brifaximin&Search=true#Post75506

On this thread one person says "my GI tried it on me about 5 years ago before Humira was approved and I reacted to remicade, I was on a liquid diet at that point, sadly it did not work for me. "
http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=190046&Searchpage=1&Main=17594&Words=%2Brifaximin&Search=true#Post190046



Yes, that is unfortunate. Given her pain seemed not to respond to ANYTHING, it is likely that there is a confounding variable there. Also, damage done by AS is not reversible, so if her pain is from the mechanical functioning of her joints (which may have been damaged so much that they will always be in pain) then she will not benefit from the Rifaximin treatment. I, however, have had pain for a much shorter duration of time and am seeing improvement, though it's not completely gone. I wonder if I've also permanently damaged some part of my spine and the pain will always be at this low level in certain seated positions? Also, she could have had a confounding periodontal infection from all the stuff she'd tried and that would have never been helped by Rifaximin, or anything else she tried as the invader that was triggering the immunity was not one from the guts. Of course, this is all speculation at this point.

Re: Potential "Patch" for AS
PainintheAS #283181 06/02/19 12:03 PM
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Another previously very active forum member, Tacitus, who had strong views on alternative treatments, had tried Rifaximin along with quite a few other antibiotics, and mentions Rifaximin many times, but he doesn't say specifically if it helped him. Anyway I find the concept very interesting.

The note about how it reduced your resting heart rate is also noteworthy, I haven't seen a lot of folks talk about heart rate as a noticeable variable in AS but I will examine my own.

So I wonder what is your plan, to take Rifaximin continually? Once in a while? How would you justify to the doctor to give you a recurring prescription?

Last edited by dan321; 06/02/19 12:03 PM.
Re: Potential "Patch" for AS
dan321 #283185 06/03/19 06:37 AM
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Originally Posted by dan321
Another previously very active forum member, Tacitus, who had strong views on alternative treatments, had tried Rifaximin along with quite a few other antibiotics, and mentions Rifaximin many times, but he doesn't say specifically if it helped him. Anyway I find the concept very interesting.

The note about how it reduced your resting heart rate is also noteworthy, I haven't seen a lot of folks talk about heart rate as a noticeable variable in AS but I will examine my own.

So I wonder what is your plan, to take Rifaximin continually? Once in a while? How would you justify to the doctor to give you a recurring prescription?


Generally, I find that attacks to my body raise my heart rate. The inflamed lining of my intestines causes a lot of foods to be triggering to my system. I'll notice sweating, lethargy, fatigue, etc. I have kept a log in the past, and my resting heart rate was 62ish upon waking from sleep. Doing any kind of normal activity and then sitting down, if not under attack, would be around 72+. If my body was under stress from the food I ate, it would be around 88-115, with 115 being a food that really irritated me. Granted, I am now eating a very very low starch diet...I now check my heart rate and notice that I am around at a much lower 55 bpm. Some days it will spike up to 88-90 when I am having a weird attack or something is "flaring." I am currently flaring SIGNIFICANTLY less and with less magnitude than before. Still continuing with Rifaximin, will keep you all updated!

Also, I mentioned in my first post you cannot take it indefinitely, you must take it in cycles...or it can upregulate your absorption of triglycerides and cause fatty liver. As for how to get more, currently working on it. I have some unorthodox options but am trying to go the "legit" route. This would involve showing docs the increasing amount of evidence that's piling up in dozens of studies that shows its effectiveness in treating IBS, not just SIBO and IBS-D.

Last edited by PainintheAS; 06/03/19 08:25 AM.
Re: Potential "Patch" for AS
PainintheAS #283197 06/04/19 03:33 PM
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Looks like this could be a powerful tool to be able to use it as needed long term for AS.Minimal side effects, killing the bad bacteria and correcting leaky gut. Looks like it is pretty expensive if insurance isn't cover it though. The trick would be figuring out how to get insurance to cover a long term continuous supply. I guess it would only ever be prescribed on a short term basis even for those of us with obvious IBD. Maybe that will change in the years to come. I'd love to be able to try it but would hate if i was told i had to stop while it is working.

Re: Potential "Patch" for AS
PainintheAS #283198 06/04/19 04:26 PM
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I am going to ask my family doctor to give me a prescription for Rifaximin. For my AS, he strongly warns me not to take NSAIDs due to my UC and use of blood thinners, telling me he's seen too many disaster scenarios in the ER where long-time NSAID users die from internal bleeding and that I would be at high risk. He also recommends not taking biologics due to the various risks and problems associated. So when I ask him "so, what should I do?" he just says "sounds like you're between a rock and a hard place". Not very helpful! I still take celebrex periodically but am very scared about it and try to do so sparingly, but lately it's just been unliveable unless I take it every day.

So, I will show him the study from March on Rifaximin curing AS in mice, and the other study from 9 years ago about Rifaximin having positive effects on people with Crohns, and see what he thinks. I suppose the other way to do it would be to pretend I have traveller's diarrhea but just don't think I could be dishonest with the doctor no matter how unhelpful he's been thus far.

Last edited by dan321; 06/04/19 04:29 PM.
Re: Potential "Patch" for AS
The_Inflammator #283199 06/04/19 05:54 PM
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Originally Posted by The_Inflammator
Looks like this could be a powerful tool to be able to use it as needed long term for AS.Minimal side effects, killing the bad bacteria and correcting leaky gut. Looks like it is pretty expensive if insurance isn't cover it though. The trick would be figuring out how to get insurance to cover a long term continuous supply. I guess it would only ever be prescribed on a short term basis even for those of us with obvious IBD. Maybe that will change in the years to come. I'd love to be able to try it but would hate if i was told i had to stop while it is working.


Originally Posted by dan321
I am going to ask my family doctor to give me a prescription for Rifaximin. For my AS, he strongly warns me not to take NSAIDs due to my UC and use of blood thinners, telling me he's seen too many disaster scenarios in the ER where long-time NSAID users die from internal bleeding and that I would be at high risk. He also recommends not taking biologics due to the various risks and problems associated. So when I ask him "so, what should I do?" he just says "sounds like you're between a rock and a hard place". Not very helpful! I still take celebrex periodically but am very scared about it and try to do so sparingly, but lately it's just been unliveable unless I take it every day.

So, I will show him the study from March on Rifaximin curing AS in mice, and the other study from 9 years ago about Rifaximin having positive effects on people with Crohns, and see what he thinks. I suppose the other way to do it would be to pretend I have traveller's diarrhea but just don't think I could be dishonest with the doctor no matter how unhelpful he's been thus far.


Yes, I completely agree. I felt the same way and presented the studies; however, it never played out in my favor. It seems like doctors get really upset when it seems like you are acting like you "know more than they do." However, we are just constantly on the lookout for something better and a way out, whereas most of the time they don't keep up regularly...but they obviously should. They could look at me in severe pain and tell me things that would require me to wait for over a month longer (damage is irreversible in AS) all because they weren't convinced that the insane amount of evidence I've gathered was enough to justify certain courses of action. Hypocratic oath seems much more like the hypocritical oath to me in today's medicine. There are those of us that are intelligent enough to find answers for ourselves out there, and could even have something to offer medicine. I was educated in science...I understand when inferences can be made and when they cannot. I understand that it requires repeated trials of a theory that show reproducible results in order to draw conclusions. I've done all of that in my own research on multiple different studies showing the same findings, etc. It doesn't seem to matter to them.

I also want to be clear, just so your expectations are not improperly set: Rifaximin does not cure AS in HLA-B27+ people...it is only a patch. In those who follow a strict diet and keep gut inflammation low, it may happen to stave off the disease for quite a long time thereafter. However, HLA-B27 automatically predisposes people to gut inflammation and, eventually, the issues return due to this, as bacteria are affected by the state of the gut. If you are NOT HLA-B27+ then perhaps Rifaximin can be a potential cure if you don't continue to behave in a manner that put you towards the disease, to begin with. If this was you traveling and then catching something or some other such one-off event...then I don't forsee relapse.

Since Rifaximin is now being used in the treatment of IBS, not just Traveler's Diarrhea (or IBS-D,) I think that is an avenue that could play out long-term. The first run is 2 weeks. Then you can get your doc to approve another 2 weeks, which is accepted by Salix if the first two weeks aren't enough, which you should easily be able to just tell a doc you don't feel you've had complete remission of symptoms. Once that is done, you should see some significant improvements.

To MAINTAIN I would highly recommend that all those with issues that stem from HLA-B27 consider incorporating "bone broth" into their diets to help repair the guts and keep a strong barrier. Kettle and Fire arguably make some of the best bone broth products you can order on the internet and I am considering a monthly subscription model. (Kettle and Fire) Maintaining a healthy diet as well, which I have mainly been on the low-starch/no-starch diet and maintaining ketosis. This has been very helpful for me in many ways, not all of which are related to the management of AS symptoms. Most notably my energy is longer-lasting and my hunger is more of a low-grade constant thing, instead of ever getting "hangry" or shaky, etc. My thought processes are clearer and I require less "activation energy" to get things started. Don't forget the study I showed recently, that taking partially hydrolyzed guar gum (PHGG) alongside taking Rifaximin worked significantly better than taking Rifaximin alone. The supplement is cheap and can be found on GoodGutSolution (an IBS/IBD related site) at a discount, or on Amazon too. (Good Gut Solution) (Amazon). The rate of "relapse" was much lower when using PHGG, thus concern of not getting future rounds of Rifaximin would be reduced (if you are not HLA-B27+.) If you decide to use PHGG, remember to start SUPER slow. Don't just start taking the recommended 2 scoops a day with meals and with your medication (in this case Rifaximin.) I spoke directly to the company and they recommended starting from 1/4 tsp or tbsp and working your way up. This was based on my theory, and the links I showed to support it, that keeping bacteria fed helps you kill them faster than starving them.

For those of us that are HLA-B27+, the bone broth is essential to keeping a barrier between the gut and the microbiome in place so that leaking doesn't occur. Other things to consider are taking butyrate, which promotes epithelial cell integrity (I believe I mentioned this in another post.) It's because of an improper firmicutes to bateroidetes ratio that butyrate production is skewed in HLA-B27 and gut integrity eventually gets compromised. So, helping to shift this back with butyrate supplementation for the long-term might also be a really helpful tool. I shared the links regarding the imbalance and the production of acetate vs butyrate in each of those categories of bacteria in another post before. Here is one of the best companies on the market for a quality butyrate supplement. (Butyrate)

Please remember that before taking these courses of action you MUST determine whether your AS comes from:

1) HLA-B27 related intestinal inflammation and dysbiosis (they go hand-in-hand.)
2) An offense of the gut not related to HLA-B27
3) An offense elsewhere, like periodontal infections

Rifaximin can only really be of help in cases 1 & 2. If you have some periodontal issues, Rifaximin only acts within the gut and you will still be in pain and reap very little benefit. However, Rifampicin is systemic (which means side effects will also be much worse!) I have recently read about those who suffer from Reactive Arthritis (ReA.) A study was done that showed that Rifampicin combined with doxycycline or azithromycin worked quite well to completely halt the syndrome/disease in affected peripheral and axial joints, perhaps even acting as THE CURE. One could not really tell unless tissue was further biopsied after the individual claimed that no symptoms were detected at the 9-month post-study mark, which was these biopsies were not done; the patients merely attested to remaining symptom-free. This is because ReA IS (no question anymore because various articular fluid and cartilage samples have shown bacterial cells in the affected joints) a disease related to having an "infection" in your joints where the bacteria no longer replicate, but change their DNA and cellular structure to hijack your own synovial fluid cells to make their proteins for them, usually indefinitely. The reason they cannot be cleared is that, usually, people who have an issue produce lower IFN-gamma in their cartilage, as is a common issue in those with HLA-B27. So, we have yet another match-up for symptoms in the bacterial model. I might try this combination antibiotic therapy in the near future as I also have ReA that is NOT affected by Rifaximin. Check the study out if you are interested. (LINK)

So, for those of you that suffer from other syndromes in the SpA category, such as ReA/scleritis/iritis/uveitis...this may be a good avenue to look down (the combination therapy above.) Generally, uveitis/scleritis is your body reacting to various proteins and other compounds created by specific bacteria. It would make sense that someone with ReA would also start having issues in the eye. Also, sometimes it requires that you go on to develop AS with ReA first before the eye complications show up. This is likely related to the way TLR's work (Toll-Like Receptors.) They only act a certain way once certain conditions have been met, or are continually present. I don't have the study quickly on hand to demonstrate this effect, but it makes COMPLETE sense from what I've read.

Let's keep going and get people free of this dang set of syndromes baby!

Last edited by PainintheAS; 06/04/19 06:11 PM.
Re: Potential "Patch" for AS
PainintheAS #283204 06/05/19 01:43 PM
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The Rifaximin sounds interesting because there's a study out (can't imagine 1 study is conclusive but at least it's a start). But once you get into NSD, bone broth, gut dysbiosis, etc. it does start to sound like pseudoscience... I followed NSD religiously for 6 months on the suggestion of many in the Kickas forum but it didn't do anything for me except make me lose tons of weight, look and feel awful, and drive my family crazy with all the food restrictions and iodine-testing, etc.. In fact I felt great when I finally started eating normal food again.

Bone broth is an expensive fad, no? I didn't see the mice in the Rifaximin study having to drink bone broth smile smile

Obviously there must be something to these things or there wouldn't be so many fervent supporters out there but I found the evidence for it to be weak, and obviously what I actually cared about - results - just weren't there for me.

Last edited by dan321; 06/05/19 01:44 PM.
Re: Potential "Patch" for AS
dan321 #283207 06/05/19 06:13 PM
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Sounds kind of like my experience with NSD. It worked very well for me on my AS and IBD by itself but it suuuucked. Never been so pain free and miserable. Felt like my brain was on auto-pilot.I was just done after a few months. If an antibiotic worked well only in conjunction with lifelong NSD, I would just resort to NSD again.

Bone broth doesn't have to be expensive if you make it yourself. I don't have hours of daily access to a kitchen to make NSD work though.

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