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Re: Potential "Patch" for AS
PainintheAS #284497 11/07/20 04:50 PM
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Update: After reading about those compounds, of which punicalagin was one I hadn't read about before...I have purchased Life Extensions Pomegranate Complete and will resume taking my AlliMax. Thanks for a wonderful reminder and addition to this post.

Re: Potential "Patch" for AS
PainintheAS #284540 12/08/20 09:13 AM
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Hey guys! I have a pretty huge update! I want to detail an experience and some thoughts below.

Candibactin AR/BR and other natural antimicrobials have worked pretty well for me when I need to control increasing pain. However, I've had a recent experience that I am going to post about that has pretty much ended any doubts in my mind that HLA-B27 related disease is strictly triggered by bacterial insult. In short, I believe that the Candibactin helped eradicate a subset of bugs that was causing me issues from my initial infection in Mexico that triggered my genetics to move into a diseased state. The more I've read about HLA-B27 and its binding groove, the more I realize that B27 is simply "unstable" in its bonding. It will bond peptide fragments, however, they are not firmly bonded. Thus, they can "wiggle" and it is this "wiggling" that allows these peptides to interact and bond with other things they normally wouldn't. This would explain why HLA-B27 also slowly builds up inflammatory responses in the body over time, but an acute interaction of just the right type can cause a very rapid progression if there is some form of "mimicry" or interaction in that unique peptide the invader presents to the immune system in comparison to other self-antigens, etc. The HLA-B27 variants 06 and 09 are resistant to the disease and they lack this "wiggling" due to a different set of amino acids at certain locations along the chain.

No, back to relating this back to my experiences. I would take rounds of my natural antimicrobials when my pain would increase over time (eating and growing more and more bacteria over time and taking psyllium fiber would usually result in increased pain over weeks to months). However, recently I got an infection from bad food being delivered from Amazon (Whole Foods). It ended up being a blessing in disguise. I had to go to the ER and got an ultrasound, which found I had an acute case of diverticulitis. They forced me to take antibiotics while I was there in the hospital, even though I was reluctant to do so given my reactivity to antibiotics normally. The antibiotic they gave me was Metronidazole. I had ZERO reaction to it but had the normal metallic taste and loss of appetite. I finished the course of that antibiotic but ditched the second one they gave me and substituted it with FC Cidal and Dysbiocide (my shipment of Candibactin that I reordered was stolen because FedEx is stupid and left my packages out in the open in the mailroom). After 10 days I decided to slowly start eating heavier and heavier foods. However, it was also Thanksgiving, so I ended up cheating at a friend's small gathering. What shocked me was that I did not react to ANY of the food at all. It is now ~3 weeks later and I am pain/reactivity free and eating whatever I want! I have a feeling there was some other resident that was creating byproducts that, upon eating complex carbs, I was reactive to that byproduct. I can't be 100% sure of this, as it could have just been a specific bacteria that was growing more and more by eating carbs and going dormant when I ate keto. All I can say is...I can eat anything right now and am basically in 0 pain. I have eaten rice, bread, starchy veggies like potatoes, super sweet deserts during Thanksgiving, etc. I still have some other symptoms that have persisted from my disease getting worse (heart palpitations...my heart literally stops beating...or beats like crazy on simply standing up or doing mild exercise. This is autonomic nervous system dysfunction, which can occur in people with AS and ReA.) However, the amount of times my heart skips or feels fluttery has significantly decreased within the last 3 weeks, which tells me the inflammatory response that is causing the heart valve/nerve damage is reduced quite a lot. All in all, I feel much better and I am happy to have taken this round of antibiotics.

My next project is going to be reducing my reactivity by trying to work with a select few peptides, like Thymosin Alpha 1, to try and normalize my immune response. There are a few other things I am planning to try but at the moment I am just enjoying no pain and a massively expanded diet!

Re: Potential "Patch" for AS
PainintheAS #284596 01/11/21 10:32 PM
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Thanks for the update. Did the effect of the metronidazole persist or did things go back to baseline after a while?

Re: Potential "Patch" for AS
butters #284600 01/17/21 08:14 PM
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Originally Posted by butters
Thanks for the update. Did the effect of the metronidazole persist or did things go back to baseline after a while?

Metronidazole gains have persisted! I am still relatively pain-free and eating most anything I want. I am not trying to go too crazy but I will say I just ate a whole bag of chips yesterday lol...no pain.

Re: Potential "Patch" for AS
PainintheAS #284601 01/17/21 11:20 PM
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Nice one, glad to hear the results have been long lasting.

I came across a study from China recently that found that 89% of AS patients had SIBO based on hydrogen breath testing with lactulose - https://ard.bmj.com/content/78/Suppl_2/1482.2

Another smaller study in Mexico found 33% of AS patients had SIBO and that hydrogen breath levels were negatively correlated with sulfasalazine intake which makes sense as it contains sulfapyridine which is an antibiotic - https://ard.bmj.com/content/78/Suppl_2/483.2

So it's possible that SIBO could be an important factor in a large percentage of people with SpA. I'm of the opinion that anything that causes chronic gut inflammation could cause SpA so it may be that there's different types of gut inflammation in SpA - Crohn's type, UC type, and SIBO type. They aren't mutually exclusive either as around 20% of Crohn's and 30% of UC patients have SIBO.

There's been a lot of interesting research on SIBO in the last few years. In many cases it seems that food poisoning initiates SIBO. Bacteria that cause food poisoning release cytolethal distending toxin B (CdtB) and the body then produces anti-cbtB and anti-vinculin antibodies. Having anti-cbtB or anti-vinculin antibodies is 90% predictive of IBS.

The anti-vinculin antibodies seem to cause an autoimmune type reaction against the gut which affects the migrating motor complex, slowing down the motility of the small intestine and diminishing the cleaning wave of the gut that clears bacteria out between meals, resulting in SIBO. This has been experimentally verified in rats with campylobacter which leads to SIBO. Interestingly, people with the antibodies are more likely to get food poisoning again which increases the antibodies further and perpetuates the vicious cycle.

Do you think it's plausible that SIBO could explain the increase in disease activity after contracting a water/food-borne pathogen in Mexico and the positive response that you had to restricting starch and fermentable fibre and taking herbal antimicrobials, rifaximin, and metronidazole?

Re: Potential "Patch" for AS
butters #284602 01/19/21 04:43 PM
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Originally Posted by butters
Do you think it's plausible that SIBO could explain the increase in disease activity after contracting a water/food-borne pathogen in Mexico and the positive response that you had to restricting starch and fermentable fibre and taking herbal antimicrobials, rifaximin, and metronidazole?

100%. Also, you've definitely brought up very important mechanisms that have a very important mechanical action to worsen the environment and cause dysfunction. One thing to note, that isn't noted in that analysis is that any bacteria (good or bad) regulate cytokine expression through interleukin modulation in the gut. Thus, any kind of SIBO is likely going to cause you to house invaders that upregulate IL-17 (the interleukin pathway that deals with insults to epithelial linings - gut, lungs, etc) The IL-17 pathway is massively implicated in AS/SpA's. Thus, we have mechanical issues you mentioned, the immune memory formed that makes infection more likely and inflammation much more potent, and then we have the driving of the inflammatory pathways through the communication the bacteria have with the gut lining itself. All of these things are extremely important in creating the "profile" of an AS sufferer.

To further your line of reasoning, and demonstrate is indeed valid, check out: Link.

Basically, I've treated myself under two assumptions:

1) I have massive SIBO due to dysfunction in the immune system, so treat SIBO
2) Keep the number and type of bacteria lower than in normal/healthy people since the number of interactions with the intestinal wall drives the inflammatory pathway. The LPS coating (lipopolysaccharide) of bacteria is one of THE most potent initiators of acute inflammatory (TNF-alpha) response.

So, I may not have as diverse a gut microbiome as I used to, but mainly because my immune system is too hypersensitive to allow it anymore. This might make me more susceptible to various infections (but nowhere near as susceptible as blunting my immune system with biologics), but at least I am more mobile and able to eat a wider variety of food. I think, in the long-run, this is more important as I won't have as many nutritional deficiencies and I can enjoy a more normal/mobile life.

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