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Re: Potential "Patch" for AS [Re: PainintheAS] #283138 05/24/19 03:15 PM
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dan321 Offline
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Originally Posted by PainintheAS
I decided to get this drug for myself


Just wondering how you got the prescription for Rifaximin? Through a doctor? I was thinking to myself I'm not sure how I would even obtain this.

I have seen some others mention success with antibiotics over the years but they seem to be more on the fringe. I'd be interested to see how it goes for you after a longer period.

Last edited by dan321; 05/24/19 03:15 PM.
Re: Potential "Patch" for AS [Re: dan321] #283139 05/24/19 07:29 PM
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PainintheAS Offline OP
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Originally Posted by dan321
Originally Posted by PainintheAS
I decided to get this drug for myself


Just wondering how you got the prescription for Rifaximin? Through a doctor? I was thinking to myself I'm not sure how I would even obtain this.

I have seen some others mention success with antibiotics over the years but they seem to be more on the fringe. I'd be interested to see how it goes for you after a longer period.


I mentioned some routes near the end of the post, which would be trying to demonstrate SIBO. It is also being approved for IBS, which many individuals with AS will have by nature of the disease.

Re: Potential "Patch" for AS [Re: PainintheAS] #283140 05/24/19 08:15 PM
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Wishing you a speedy recovery!

We've been meeting on a nearly monthly basis for years, so whenever you want to join, you are welcome :-)

kind regards,
Rich


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Potential "Patch" for AS [Re: PainintheAS] #283141 05/24/19 08:29 PM
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When looking for a cure, we encourage our researchers to explore and run studies.

Please consider:
Rifaximin has never been studied to treat AS. There is a high amount of conjecture. One persons unblinded results of two days of usage for a chronic condition is not something I would think any physician would recommend without more data.

I'm grateful that this forum is here for people to share experiences and ideas.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Potential "Patch" for AS [Re: PainintheAS] #283142 05/24/19 08:31 PM
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Generally regarding antibiotics and spondylitis:

Prolonged and even short-term use of antibiotics can alter one’s microbiota, and in particular gut microbiota. Gut microbiota are implicated in the pathogenesis of spondyloarthritis, but it remains to be determined whether there is a particular shift one way or another, that is ‘good’ or ‘bad’ for SpA. It is also unclear as to whether changes in gut microbiota can trigger SpA, or whether SpA triggers changes in gut microbiota (or both). Prolonged courses of antibiotics can lead to many gastrointestinal problems and could make someone’s SpA worse, OR could make their SpA better. It’s just not clear.

I hope that helps.

Last edited by RAHMBA; 05/24/19 08:33 PM.

AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Potential "Patch" for AS [Re: RAHMBA] #283144 05/25/19 02:11 AM
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PainintheAS Offline OP
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Originally Posted by RAHMBA
When looking for a cure, we encourage our researchers to explore and run studies.

Please consider:
Rifaximin has never been studied to treat AS. There is a high amount of conjecture. One persons unblinded results of two days of usage for a chronic condition is not something I would think any physician would recommend without more data.

I'm grateful that this forum is here for people to share experiences and ideas.


The studies I referred to did use Rifaximin to treat AS, but only in mice so far. There are also studies I supplied where symptoms of AS were severely reduced using moxifloxacin in human patients with GREAT results. This already puts another tick on the side of "treat bacteria, reduce AS symptoms." (LINK)

Originally Posted by RAHMBA
Generally regarding antibiotics and spondylitis:

Prolonged and even short-term use of antibiotics can alter one’s microbiota, and in particular gut microbiota. Gut microbiota are implicated in the pathogenesis of spondyloarthritis, but it remains to be determined whether there is a particular shift one way or another, that is ‘good’ or ‘bad’ for SpA. It is also unclear as to whether changes in gut microbiota can trigger SpA, or whether SpA triggers changes in gut microbiota (or both). Prolonged courses of antibiotics can lead to many gastrointestinal problems and could make someone’s SpA worse, OR could make their SpA better. It’s just not clear.

I hope that helps.


I am pretty sure it was the papers I mentioned, or others I can find if not, that the bacterial shifts pre-dated the SpA. This was not just one experiment, this is well-documented in multiple experiments. Please, search for these findings and you will find them. The direct link between microbiota affecting the interleukin pathways, which then upregulated the cytokine expression is well-documented in them. I didn't make that up. While you are stating these things to be safe, I think what is more accurate is that "mainstream medicine" has not "accepted" these things as the truth, but the data backs them up in multiple studies already and that is why they keep getting funded...because there is merit in the idea. What I mean is that there is "repeatable" experimentation being done...and these repeated experiments find the same thing and multiple organizations/institutions/people keep funding these repeated experiments.

Also, in reply to this alteration of gut microbiota by taking antibiotics...yes it is true. However, at least that is exactly the target of the drug and you are intending to affect what you are affecting. How about all the drugs every single person on this forum takes to manage pain, such as NSAIDS, or others that take diabetes medications, etc. These are not intended to affect gut microbiomes, yet are prescibred and supposedly help people. (LINK) They have anti-microbial effects and even promote resistance to drugs. So, at least what I am proposing is EXACTLY the target it should be intending to affect. I'd suspect all these IL-17 and IL-6 drugs are also affecting the microbiome, since they modulate interleukin activity anyway.

Also, I am now on my 4th day and went to physical therapy. I have NEVER been able to sit in a seated position and do my exercises without frequent breaks because I am in so much pain. Today, I did all exercises without even needed to stand up and "shake it off." I walked into therapy without crutches today, and they said to me, "Who is this guy? You are like a completely different person." Again, anecdotal, but it lines up with what I'll reference next.

I am not the only person who has used Rifaximin, however, I am the only one to put all the pieces together for everyone. This person
(LINK) also had the same experience and was, and I quote, "afraid to stop taking Rifaximin," because of how her pain completely went away while on it. Her doc even called in and agreed to refill her script! (Dig deeper into that post and you will see that Rifaximin only stays in the intestines and is not well absorbed, as I discuss below. Also, another poster there talks about how amazing Rifaximin is in its ability to help with AS, and he claims it is "the best for AS." So, this brings the count from 1, now to 3, and these are people who have done more than my few days of dosing.)

I am not trying to be a pest, but medicine often moves slower than science, which often moves too slowly as well, when it need not and people get harmed or end up incurring "damage in wait." It is already accepted that "healthy people" have a VERY characteristic ratio of the different types of bacteria in their intestines performing similar tasks (though they may be different specific species, they are of the same class)...this is accepted and used as a clinical diagnostic standard. Ask companies that doctors use to assess their patients, like Genova Diagnostics...they will literally tell you what bacteria and what ratios are normal in healthy people because they are paid to know and collect this data. I can even provide my PDF's of my stool samples that show EXACTLY the same imbalance in firmicutes to bacteroidetes ratios that the mice in the first article I ever submitted for Rifaximin usage had. The mice transfected with HLA-B27 develop a disease progression which mirrors mine? This cannot just be due to coincidence. The chance of that being coincidence alone is astronomically low. It was also noted that Rifaximin alters gut microbiota towards ACCEPTED ratios of these bacteria, which is why it is now being prescribed for IBS, not just SIBO and HE. Rifaximin is also one of the safest of all antibiotics because it is not absorbed by the body. It only acts in the intestines because of this lack of absorption,(LINK), so for all the other people taking rounds of antibiotics anyway, this would still be safer than ALL of those in most cases (you are not allergic to Rifaximin.) I have taken antibiotics before and they all make me feel like garbage...this is THE ONLY ONE that I haven't felt really anything other than slightly elevated heart rate on day one. In fact, I am feeling so good I am smiling all day and becoming happier and more energetic.

I am just providing facts from papers that demonstrate, repeatedly, that gut microbiota shifts occur, and more recently they are reporting that it occurs BEFORE SpA. If it was the other way around then, "mice raised in germ-free environments don't develop SpA" (LINK) wouldn't make sense. It is the introduction to bacteria that causes the disease progression. Even if it WERE the other way, then you still need to treat bacteria being out of whack, to begin with, because SpA's got them out of whack. So fixing them at least addresses a problem...

Also, yes now it's more than just me experiencing success with this course of action for treating AS. The other methods of treating (interrupting communication between your body and your interleukin signaling) are far more dangerous, which is why people get infections, cancer, or even die from those treatment methods. If altering gut microbiota was a huge huge risky deal, people would be reporting tons more issues with probiotic supplements than they do. I have not really heard of people dying from probiotic usage, but Humira directly lists death as a possible side-effect. I am being extremely reasonable in deciding to attack the bacterial aspect of this disease due to both its safety profile and the logic behind it.

Lastly, each of the people on the forum who have replied to my post so far, including me, have all stated that some sort of gut or oral thing had happened to them before their disease started, or occurred right as the disease started. Putting this many pieces together, that all fit well with scientific evidence and all point to the microbiome, it would literally be one chance in a billion that these relationships were due to chance. I definitely ended my first post by stating that these were my opinions and that if people chose to follow suit, they did so at their own risk. I even detailed and outlined the risks associated with Rifaximin usage and dosing. Given all that, it is still my opinion that this is the safest and most well-targeted option currently out there for management of this disease, as well as potentially the best.

Last edited by PainintheAS; 05/25/19 02:45 AM.
Re: Potential "Patch" for AS [Re: PainintheAS] #283148 05/26/19 11:07 AM
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I have no problem with what you are suggesting. I have read similar accounts of antibiotic therapy being used to treat reactive arthritis. I can easily envision an enteric infection causing an acute onset of reactive arthritis. The problem on this forum is that---if you haven't been diagnosed with AS and not taking a biologic, then you are in the wrong forum. It's not that I was treated badly ... I just felt I didn't fit i in. Especially since, I have been taking prednisone for years.

I would have a similar problem convincing my doctor to prescribe Rifaximin since I must have an iron stomach because I never have had any bowel issues except twice. The first time was 25 years ago at the onset of reactive arthritis. The second time, was a presumed case of norovirus and I found myself in an ICU. It sounds like you are suggesting the purpose of Rifaxmin is solely to "seal the gut" and not to treat any sort of infection. I can't help thinking that something has colonized in there that shouldn't have and is now part of my normal flora.



Re: Potential "Patch" for AS [Re: DadCue] #283149 05/26/19 11:33 AM
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Originally Posted by DadCue
I have no problem with what you are suggesting. I have read similar accounts of antibiotic therapy being used to treat reactive arthritis. I can easily envision an enteric infection causing an acute onset of reactive arthritis. The problem on this forum is that---if you haven't been diagnosed with AS and not taking a biologic, then you are in the wrong forum. It's not that I was treated badly ... I just felt I didn't fit i in. Especially since, I have been taking prednisone for years.

I would have a similar problem convincing my doctor to prescribe Rifaximin since I must have an iron stomach because I never have had any bowel issues except twice. The first time was 25 years ago at the onset of reactive arthritis. The second time, was a presumed case of norovirus and I found myself in an ICU. It sounds like you are suggesting the purpose of Rifaxmin is solely to "seal the gut" and not to treat any sort of infection. I can't help thinking that something has colonized in there that shouldn't have and is now part of my normal flora.


On the contrary, I mentioned that Rifaximin is so good because it is BOTH an antibiotic and an anti-inflammatory agent that also stimulates healing of the gut (and sealing, which is very beneficial to those with HLA-B27 especially.) In the post right above yours, I mention how bacteria get out of balance and Rifaximin brings them into balance. It is of note that it requires only one offense to the gut/immune barrier for the cascade to take place for those with AS. The general progression is intestinal inflammation (from any number of sources, in some HLA-B27,) followed by gut barrier compromise (leaky gut in some, a pathogen in others,) followed by the symptoms of ReA or AS. Another route is the oral pathogen offense, usually periodontal.

To be clear: Rifaximin is an antibiotic so it will DEFINITELY address the infectious element, which is why it is prescribed for Traveler's Diarrhea (an infectious agent,) as well as promote "sealing" of the intestines through tight-junction proteins. It is a double whammy, which is why another woman on another forum experienced profound benefit from it, as well as another member on that forum calling it the perfect fit as a treatment for AS. This was on the kickas forum that I linked above just one post ago.

Last edited by PainintheAS; 05/26/19 11:42 AM.
Re: Potential "Patch" for AS [Re: PainintheAS] #283168 05/31/19 11:57 PM
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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.

Re: Potential "Patch" for AS [Re: PainintheAS] #283173 06/01/19 07:06 PM
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So, nearly a 2-week update! I barely have any pain whatsoever in my lower lumbar region. I am also sticking now (last 4-5 days) to an NSD to help with the speed of healing; however, I have found that (and theorized myself) happy bacteria can be eradicated more easily. The no starch diet is a good idea to relieve symptoms, but in terms of treating the bacteria that you're trying to eliminate, not feeding them can cause them to go into starvation mode and "sporulate." This means they basically wall themselves off and are much less receptive to antibiotics or antimicrobials in this state, or sometimes they are completely not receptive at all. (LINK) The reason I decided to research this further is that upon eating carbs at all, the pain can come back within a day and ramp up for a few days. To me, this indicates that the cessation is not due to clearance of the offending bacterial strains, but due to the fact that they are less biologically active on the diet.

Today, I am no longer lethargic or "overburdened" by the systemic inflammation response. I can feel when it begins to happen (when I was eating small amounts of carbs) as even my knee, from the surgery, behaves more poorly and aches more, not just my spine. I am 4 weeks post-meniscal-repair and improving much more quickly after having started Rifaximin. I have regularly been taking my heart rate throughout the day as I have a log of this from the past. The results are shocking. My resting heart rate upon waking used to be in the '60s (relatively normal,) however, during the day and/or after meals it was between 75-110, depending on how offensive the meal was to my system or how much stress my body was perceiving/promoting during the day. Consistent heart rate tests now produce results within the 55-62 range, even after meals. I've even done some slightly strenuous activities and my heart rate doesn't move too far and sometimes barely at all. I just feel "calm and relaxed" most of the time.

New approaches towards dealing with what is going on in those with post-infectious IBS/IBD or, like with HLA-B27, an aberrant gut microbiome that can damage the nerve associated with proper gut function, which includes a test that can sense a protein in the blood that almost all people produce when they have these problems. Read the latest update with what's being developed here. There is also a lot of wisdom to be gleaned on the gut/body connection here and how bacteria can be counter-intuitive sometimes. (LINK)

In the vein that feeding the bacteria is more important that starving them FOR TREATMENT, not symptom management, I found these:
(LINK 1)
(LINK 2)
(LINK 3)

These suggest that the theory of using partially hydrolyzed guar gum (PHGG) as a food source to both a) feed and maintain the good bacteria in the gut that you're supplementing through probiotics or diet / or are just residents there naturally, and b) feed the offenders (since PHGG is a carb, it would be metabolized by the bacteria causing symptoms in AS patients.) This gives weight to the argument that feeding bad bacteria and making them happy will make them easier to kill, as the study using Rifaximin alongside supplementing with PHGG showed better outcomes than using Rifaximin alone!

TLDR;
Feelin' good people! Feelin' REAL good!

Last edited by PainintheAS; 06/01/19 07:59 PM.
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