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Re: Potential "Patch" for AS [Re: dan321] #283210
06/05/19 06:54 PM
06/05/19 06:54 PM
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PainintheAS Offline OP
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Originally Posted by dan321
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.


Originally Posted by dan321
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.


I was very careful in choosing my words, and have provided TONS of studies for every claim I've made. I don't think I am the type to be touting pseudoscience...I just try things, research them, and see if they work. Bone broth is not pseudoscience by any stretch. The intestines are made from collagen and AS is a disease of the body destroying collagen. Bone broth happens to be easy to digest and is a source of collagen. It isn't a "fake supplement" with other fillers in the pill capsules, etc. The bone broth I mentioned is also of the highest quality and cooked with veggies, so as to contain a lot of nutrition. I had a VERY hard time digesting vegetables for a while and this would be a good way to gain both collagen proteins (yes you can get them elsewhere) and minerals from an easy to digest drink. I am not purporting you couldn't do the SAME elsewhere. If you'd like to source collagen and other minerals elsewhere, be my guest.

Yes, it is slightly expensive, but I have wholeheartedly seen that you get out what you put in, in terms of my health. If you don't have time to make bone broth yourself, join their subscription plan and have 1 or 2 of these drinks a day for a while and see how you feel. I am not the type of person to knock something before I try it if it doesn't seem there is any harm in it. I even took Rifaximin to SEE what would happen, which is a drug and has the potential to harm me. I then shared the results with everyone else so that they could share in potential healing benefits. This is science, and this is my body I am trying to save...if I am unwilling to drink bone broth and see how much it helps...how much do I really want to get better?

To comment on "the mice in the study didn't need to have bone broth." No, they didn't. However, their inflammation markers only returned 60-75% back into a "more normal" range. Imagine the benefits of assisting the reduction in inflammation of the intestines even further with intelligent dietary choices, because that's clearly what this disease is about. Not everything needs to have a scientific study to prove it. Some things are, indeed, just common sense. Eating too much candy (a dessert and not a meal) will be bad for you over time. People have said this for at least a hundred years with NO scientific studies. Turns out to be true. Similarly, eating an easily digestible source of protein/collagen/gelatin that the body needs is obviously going to confer benefits. Not many studies have been done, and most of them aim to attack "inconsistent amino acid profiles" or "high heavy metal contents," however neither of these really matter. 1) Consistency in the amino acid profile isn't really necessary, in order for healing to occur, because digestive processes vary in efficiency anyway (and are around 20% efficient at best.) The idea is to provide a soothing source of these compounds that don't require a pill coating, etc. 2) The amount of the elevated levels of heavy metals is still WELL WITHIN the daily safety limits of the metals they were testing for, so this is merely scare-tactics. It turns out all meats, seafood, etc. have higher levels of heavy metals in them (like lead.) This is just the nature of accumulation in organic beings.

Last edited by PainintheAS; 06/05/19 08:45 PM.
Re: Potential "Patch" for AS [Re: PainintheAS] #283213
06/06/19 11:11 AM
06/06/19 11:11 AM
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The_Inflammator Offline
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I'm not knocking what you are doing at all. I definitely believe Antibiotics and NSD eliminate AS inflammation. NSD brought AS pain to 0 and restored full flexibility in about 3 weeks. Never tried antibiotics but i believe I would have had even faster results. Would be nicer if an Antibiotic just did that job on their own while keeping a normal diet. My brain didn't do well without the carbs and nutrients so I stopped at 4 months. I turned into Bran in the last 2 seasons of Game of Thrones. A cold empty vessel. I didn't even get any cool warg abilities. It was not pleasant.

A lot of people take 2 sides on the NSD debate. I am sort of in the middle. I know it works but it reduces my quality of life and impacts my mind. I know it is all relative and someone with Severe AS would accept my side effects as minor annoyances for the pain relief I had. I think we can do better in the future. I hope. I am trying new things now.

Re: Potential "Patch" for AS [Re: The_Inflammator] #283215
06/06/19 08:06 PM
06/06/19 08:06 PM
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PainintheAS Offline OP
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Originally Posted by The_Inflammator
I'm not knocking what you are doing at all. I definitely believe Antibiotics and NSD eliminate AS inflammation. NSD brought AS pain to 0 and restored full flexibility in about 3 weeks. Never tried antibiotics but i believe I would have had even faster results. Would be nicer if an Antibiotic just did that job on their own while keeping a normal diet. My brain didn't do well without the carbs and nutrients so I stopped at 4 months. I turned into Bran in the last 2 seasons of Game of Thrones. A cold empty vessel. I didn't even get any cool warg abilities. It was not pleasant.

A lot of people take 2 sides on the NSD debate. I am sort of in the middle. I know it works but it reduces my quality of life and impacts my mind. I know it is all relative and someone with Severe AS would accept my side effects as minor annoyances for the pain relief I had. I think we can do better in the future. I hope. I am trying new things now.


I hear you man. I have been trying to make it clear (the following facts):

1) Simply changing your diet will reduce the symptoms but not the cause (you starved the bad bacteria your body fights, they go into hibernation.)
2) Simply taking the antibiotics without slowing down the offensive material you have in your diet will take a long time, but is POSSIBLE. Just hard to get Rifaximin prescription that long...

Because of 1 & 2, one should feed the gut "minimal" starch, but still some, like from Partially Hydrolyzed Guar Gum and maybe a few carbs like 10 corn tortilla chips, or a few bites of rice, per day. Feeding the bad bacteria just enough to stay alive, but not enough to thrive will keep them from entering hibernation and "walling off" their cell walls via a starvation response. Then the antibiotic (Rifaximin in my case) can exhibit its effects and reduce the population of that bacteria.

I suggest both because it is the optimal path to recovery. You will never actually be truly better following only dietary changes because you are harboring hibernating bacteria. Once your NSD + Rifaximin (or potentially metronidazole as mentioned in some other studies I posted earlier) course is complete, see if you've eliminated the bacteria by eating small amounts of carbs without the treatment. This is the angle I am playing, and it seems to make sense to me from all the different avenues of research I am bringing together.

Note:
Of course, all of this is irrelevant if your AS source is the mouth. Rifaximin won't work on infections other than what's going on in the gut, so getting your oral bacteria cultured or having your immunoglobulins tested to see what your body is "fighting" is the smartest first step in identifying which vector your AS is spawning from. Since I am HLA-B27+, I started with the gut because that gene predisposes me to gut issues and I have had them my entire life, basically.

I believe Rifampicin will work well for those with infections elsewhere, as well as those with Reactive Arthritis (which I will be trying to tackle next.)

Last edited by PainintheAS; 06/06/19 08:12 PM.
Re: Potential "Patch" for AS [Re: PainintheAS] #283231
06/10/19 08:30 AM
06/10/19 08:30 AM
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PainintheAS Offline OP
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Dug up one of the studies I had in my research list that explains, in more detail, exactly the effects that Rifaximin has on the gastrointestinal tract. I will paste the excerpt because I think it is of notable mention:

Although its poor gastrointestinal (GI) absorbability leads to low systemic blood levels, fecal concentrations remain elevated with unchanged drug[3,7]. Rifaximin does not cause drug-drug interaction and does not alter intestinal or hepatic cytochrome P3A activity[8].

Rifaximin has in vitro antimicrobial activity against Gram-positive and Gram-negative, aerobic and anaerobic flora[9]. The increased solubility of rifaximin in bile (an estimated 70- to 120-fold increase in solubility in vitro compared to aqueous solution)[3] leads to higher luminal concentrations and enhanced antimicrobial effects[10] against enteric bacteria, with possibly larger effects in the small intestine compared with the more aqueous colon[3] as well as low microbial resistance[11] with minimal effect on colonic microflora. In addition to its direct bactericidal effect, rifaximin has been shown to reduce bacterial virulence factors and morphology[12], the inflammatory response expected from virulent strains of enteroaggregative Escherichia coli (E. coli) (EAEC) and Shigella, bacterial epithelial attachment and plasmid transfer from donor to recipient strains by > 99% for bacteria resistant or susceptible to rifaximin[12], and to provide cytoprotection through altering cytokine expression and mucosal inflammation by activation of pregnane X receptor involved in detoxification and elimination of foreign chemicals and toxins in the gut in disease states[12,13].


For IBD, I mentioned at the meetup today that people with HLA-B27 have impaired mucosal functioning in the gut. I mentioned one strain that I completely butchered the name of, nevertheless, it is also mentioned in the study as having its growth promoted by Rifaximin (note metronidazole is also mentioned here, which is the other antibiotic that has been used IN HUMANS to help with AS with great success, in trials, that I posted in my first article. These drugs are helping IBD, but yet also help with AS. I will continue to stand behind the strong evidence that shows treating IBD and the associated leakages/failures of the intestinal tract will be essential in effectively treating AS. There are just so many cross-confirming statistics in my opinion):

The pathogenesis of inflammatory bowel disease (IBD) remains poorly understood. It is hypothesized that the gut microflora plays a role in the initiation and/or perpetuation of the process[140,141]. Antibiotics have a well-established role in the treatment of septic complications of IBD. Their benefit in the primary treatment of IBD is not well elucidated, however they are still commonly used in practice. Several trials have been carried out with metronidazole, ciprofloxacin, clofazimine, and other combinations. They appear to be useful in the treatment of Crohn’s disease (CD)[142-144], ulcerative colitis (UC)[145] and pouchitis; however, prolonged use of these antibiotics is associated with various systemic side effects. Based on observational data, rifaximin was associated with some improvement in IBD. Rifaximin reduces development and to promote healing of colitis in mice by reducing bacterial translocation[146]. Rifaximin may improve the existing dysbiosis in patients with CD by modulating colonic microbiota and increasing Bifidobacteria and Faecalbacterium prausnitzii147]. Rifaximin may also exert anti-inflammatory activities by increasing expression of pregnane-X-receptor and antagonizing the effects of tumor necrosis factor-alpha (TNF-α) on epithelial cells in vitro[148,149].

Faecalbacterium prausnitzii was the one I mentioned at the meetup. It is mucin-degrading, which means it thrives on the gut lining. In the right amounts, this particular bacteria can stimulate the production of more mucin by the body and help keep a healthy barrier. It also produces butyrate, which is a cellular energy source for colonic cells (I mentioned this in a prior post.) Basically, Rifaximin can help keep the stimulators of your mucosal production nearby, and in turn, they feed the colonic cells more butyrate to help promote a tight gut lining with low permeability.

The study goes on to mention that Rifaximin, due to it's anti-inflammatory effects, proved beneficial in Crohn's Disease (CD,) Ulcerative Colitis (UC,) and few other intestinal ailments. To address the statements earlier that using antibiotics can be associated with changes in the microbiota and that it is unknown whether these changes are good or bad...I would like to provide some information from the study that demonstrates the extreme safety of Rifaximin even at high dosages:

The effect of intermittent high-dose rifaximin (1800 mg daily in 3 treatment periods of 10 d, each followed by 25 d of washout) on enteric bacteria (enterococci, coliforms, lactobacilli, bifidobacteria, Bacteroides spp., and Clostridium perfringens) was studied in patients with ulcerative colitis[178]. After each washout period, concentrations of the bacteria tested returned to initial values, suggesting that the administration of high doses of rifaximin does not significantly modify the colonic microflora. Rifaximin-resistant isolates were found, mostly in Bifidobacteria and have documented rapid disappearance of bacteria resistant to rifaximin from the intestinal tract upon treatment washout[179].

Real life data are also available from studies on susceptibility alterations of bacterial isolates causing TD from different geographic locations and over time[180,181]. Bacterial isolates from individuals with TD while visiting India, Mexico, Jamaica or Kenya in 1997 were challenged against different antimicrobial agents, of which rifaximin demonstrated an intermediate activity with MIC50 of 16 μg/mL and MIC90 of 32 mg/L[180]. Around 10 years later, reevaluation of susceptibility changes in Mexico, India and Guatemala between 2006 and 2008 demonstrated no change in the MIC of isolates to rifaximin while other antimicrobial agents (e.g., fluoroquinolones, cephalosporins, azithromycin) had a significant increase in their MIC levels compared to bacterial isolates from a decade earlier[181].

Based on the above, rifaximin use appears to be associated with a low incidence of development or persistence of spontaneous bacterial mutants. Moreover, the development of important drug resistance among extra-intestinal flora during rifaximin therapy is unlikely because of minimal systemic absorption and limited cross-resistance of rifaximin with other antimicrobials.


This is why Rifaximin is such a great choice. It has minimal effect on the microbiome in comparison to other antibiotics, is not well-absorbed by the body (so it won't cause bacterial imbalance elsewhere,) has anti-inflammatory effects, stimulates pathways that help with cellular detoxification, does not form drug interactions, rarely causes any resistance to develop (and even when it does...the effect is cleared from these resistant bacteria which end up returning to normal,) and has cytokine and TNF-α regulating capabilities (which DIRECTLY demonstrates that it will have an effect on AS by specifically regulating two of the inflammatory markers that current drugs are aimed at targeting.)

All of this, plus the testimony from others on kickas.org as well as myself add up to be convincing for the case of using Rifaximin to treat AS right down to the fundamental imbalance in the system, bypassing the need to blunt entire arms of your immune system with biologics. Rifaximin will affect the same targets, but by regulating their production and not interfering with their communication to the body (which is necessary for proper immune function.) Really hoping people can convince doctors to let them give this a try.

Link to Study

Last edited by PainintheAS; 06/10/19 08:46 AM.
Re: Potential "Patch" for AS [Re: PainintheAS] #283233
06/10/19 09:42 PM
06/10/19 09:42 PM
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The_Inflammator Offline
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Well keep up the treatment if you can. The study you linked to in your first post about the fatty liver issue seemed to indicate it would take a lot longer than 3 months to become an issue in humans with the mice/human life span ratio of 1:50.

Re: Potential "Patch" for AS [Re: PainintheAS] #283258
06/15/19 03:02 PM
06/15/19 03:02 PM
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Bless you all that have the time, intelligence and energy to read all these scientific papers. My old brain doesn't understand most of what you said but I feel I got the just of it. Hearing your thoughts are very helpful to me. I have nothing of substance to add to the discussion. I only post to let you know, I appreciate very much what you are sharing. Thank you.


Faye
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Burley Coulter 'Fidelity (1977)' page 373 "That Distant Land: The Collected Stories" By Wendell Berry
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