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Re: Potential "Patch" for AS [Re: Vinqa] #283897 01/08/20 10:36 AM
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Originally Posted by Vinqa
This was a seriously eye-opening read.

Years ago I began to notice serious gumline recession in my mouth, not long before my AS presented at the conception of my first child. I developed an insane gingival tumor during my second pregnancy (largest my OB had seen in his 40+ years of work) that had to be surgically removed. I also had a cholecystectomy done not long after my first pregnancy thanks to several gallstones and now am experiencing gut troubles that I fear may lead to Crohns; my husband now has Crohns and now that I have described my symptoms to him, he urges me to get tested. His gastroenterologist also suggested I get tested as Crohns can present also in AS patients.

I am HLA-B27+ and in reading the correlation to oral bacteria and my past symptoms, this makes total sense. This and the fact that my major uveitis events revolved around particular diet changes.

As someone who hasn't seen a rheumatologist in some time, how would you suggest going about discussing rifaximin or how to begin testing?

EDIT:
Holy crow. That article regarding Klebsiella pneumoniae may explain why initially my husband was on metronidazole as his initial Crohns treatment. Though perhaps not the exact right drug to deal with it, seems his gastroenterologist might have been on to something. Maybe there might be a drug that helps both of us without the usage of biologics after all. Definitely something for me to bring up when next I can manage a visit.




If you have ANY gut issues, I would recommend just mentioning those (make it sound like IBS, perhaps even get a stool sample to show dysbiosis...or ask him to order one. A GOOD ONE. Something from Genova, which is generally ordered by more integrative medicine doctors and people that are more modern in their approach. This could POTENTIALLY require seeing another doctor.) If it's not in your gut at all, then the study I posted about rifamycin being "significantly effective" in treating AS, was actually mentioning it being used to inject into oral crypts. I would go to your dentist or other doctor specializing in mouth-related issues and present that article. I had my mouth bacteria analyzed by my dentist, it was called oral DNA. It didn't reveal the normal "red three." But, it did denote overgrowths of certain types. I have also noticed my gums receding no matter how diligent I am. This is just our bodies becoming more and more reactive to peptides, etc. It's the burden of HLA-B27 after it mounts more and more attacks to offenses. Memory T-cells make the response faster and stronger after each subsequent detection.

Let me know how that goes!

Re: Potential "Patch" for AS [Re: Onice1] #283898 01/08/20 10:42 AM
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Originally Posted by Onice1
Vinga - You mentioned this ..."I am HLA-B27+ and in reading the correlation to oral bacteria and my past symptoms, this makes total sense. This and the fact that my major uveitis events revolved around particular diet changes. " I'm curious about the diet changes. What were they? Do you mean they caused the uveitis? My episcleritis event (fever, headache, red painful sensitive eyes) came after very high doses of Ayurvedic herbs. Not sure why. In the fall I had a clear colonoscopy but I bought my own stool test from Life Extension which showed some markers for IBD but the GI doc dismissed since he didn't see anything on colonoscopy. Then I had a positive SIBO breath test which I also procured on my own from LE. My ND gave me rifaxamin as she had free samples.I took it 2 weeks and came down with what I think still is a nasty viral sore throat and sinusitis infection which is slowly resolving. However my arthritis is now over the top in my hands, wrists, knees, ankles ( my rheumatologist says it is peripheral spondylo arthropathy in light of negative RF and anti-CCP and my joints don't look like RA). I really want someone to aspirate a joint and send it into a DNA lab I have mentioned in my earlier posts, but I don't think anyone will do that. Clearly infection has gotten into my joints or is it just a body wide reaction to infection? I could try and beg once again the osteopath to aspirate a joint as he did it once before for my knees but when I messaged him about doing again to send it to a DNA lab he said I would have more symptoms(like high fever) so he did not seem willing. I don't think my rheumatologist will go outside the box either. My ND said she is training to do this but it will take her 2 years to learn. If an acute infection can bring about flare why couldn't low grade infection whether from the urinary tract or gums do the same thing to cause lesser symptoms. What about viruses, too? It's like the MDs know about the gut and infections contributing to these autoimmune diseases but they just don't know what to do about it. Check out Microgendx (Medicare approved - DNA tests for bacteria, fungi) or Aperiomics (not approved but tests include DNA viruses). I did both for my bladder disease and docs don't know what to do with results.


It sounds to me like Rifaximin "worked," however not in a way that ended up being helpful. Another pathogen may have become opportunistic when something else was keeping it at bay for you. Did you supplement with Lactobacillus Rhamnosus GG while taking rifaximin tablets (just to keep one good guys in higher numbers [one that doesn't get recognized by the immune system colonizing your gut?]) I think you ended up having something grow out of control after being "set free" by the changing gut environment by Rifaximin. However, I can't be sure. You are also 100% right that mild infections in the urinary tract can cause these things. Reactive Arthritis is usually triggered by a Chlamydia infection in HLA-B27+ people. It enters through the lungs or the urinary tract and it causes disease from then on. I am sorry that you ended up having such a reaction post-rifaximin...that is truly unfortunate. =(

By the way, I think your high dose herbals caused you issues right after because you became hyper-sensitive due to an overdose of a certain element of your treatment...like someone who slaps 100 nicotine patches on themselves...they become ULTRA sensitive to it and can die if re-exposed (also a speculation, of course.)

Re: Potential "Patch" for AS [Re: PainintheAS] #283899 01/08/20 10:45 AM
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Not that this should represent anything new...but someone from this forum that I talk to on reddit from time to time has also shown me this (which doesn't surprise me at all...it's been my theory this whole time.)

Link

Re: Potential "Patch" for AS [Re: PainintheAS] #283900 01/08/20 02:59 PM
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Originally Posted by PainintheAS
Not that this should represent anything new...but someone from this forum that I talk to on reddit from time to time has also shown me this (which doesn't surprise me at all...it's been my theory this whole time.)

Link


ok, this Clostridium strains has been known some time already causing havoc, I am still however not 100% I understand why TNF treatment was correlated with restoration “to levels indistinguishable from healthy controls.” Because there are people obviously without HAL B27 + .... meaning our Killer cells target the microbiome?


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Potential "Patch" for AS [Re: achala] #283901 01/08/20 05:51 PM
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Originally Posted by achala
Originally Posted by PainintheAS
Not that this should represent anything new...but someone from this forum that I talk to on reddit from time to time has also shown me this (which doesn't surprise me at all...it's been my theory this whole time.)

Link


ok, this Clostridium strains has been known some time already causing havoc, I am still however not 100% I understand why TNF treatment was correlated with restoration “to levels indistinguishable from healthy controls.” Because there are people obviously without HAL B27 + .... meaning our Killer cells target the microbiome?


I wrote in my earlier posts about how HLA-B27 just brings an individual to AS faster because HLA-B27 brings a person to higher levels of gut inflammation by default. This has to do with the way the HLA-B27 molecule responds to antigen/peptide binding. It will erode the gut lining and creates a common vector of infection / immune upregulation. However, I did write that it wasn't the CAUSE of the disease, it merely accelerates progression towards it. In both HLA-B27+ and HLA-B27- the offense to the immune system is the trigger, with the persistence of that offense. If you read my first post I mention a periodontal cause can also be the trigger. It is also TOTALLY possible that someone could get an H.Pylori infection, or some other gut bug, as well. In all these instances, your immune system would deal with bacteria entering the bloodstream (NOT normal,) and chronically so. This might take longer in an HLA-B27- individual as their natural response doesn't create as strong of an inflammatory chemokine release. However, with sufficient time and degradation, you will get there. If you wish to understand this, there is a study I may have posted in the past on here...but you can get to it quite quick on google by typing "HLA-B27 not linked to disease severity" or something like that. It will then show it just correlates to the time/age of onset (being earlier in HLA-B27 individuals.) I used this to craft my entire theory early on and to state that I believed these differences in the genetics of people still resulting in the same path meant that it was an environmental + immunological occurrence happening in the teeth or gut.

I think I may have also posted about how TNF-alpha is directly implicated in intestinal inflammation. When LPS (lipopolysaccharide - the coating of bacterial cells) is detected in the gut, the body naturally releases inflammatory markers to keep them in check, or to mount a response to clear the invader. In HLA-B27+ individuals, this upregulation of TNF-alpha response (mediated by NF-kB) is significantly stronger and comes on earlier in life. This is due to the extra binding that occurs on HLA-B27 homodimers. Articles abound that show that TNF-alpha can also make someone sensitive to specific strains of bacteria, as well. TNF-alpha is just the primary chemokine used to modulate inflammation under the "epithelial lining" modality of interaction. TNF-alpha would likely be released in Alzheimers and other neurological diseases (hint hint, wink wink, it is) as well as offenses to the lungs. All these locations are "epithelial lining" and thus the same chemokines, or very similar groupings, are at play. This is why curcumin can have pain-relieving effects but also mood-enhancing effects for those suffering mental decline disorders. Also, you can research on google that curcumin works to attenuate NF-kB signaling (mentioned above as the messenger that communicates inflammatory processes,) which then stops TNF-alpha release as a response. It also works on a number of other pathways, as do a lot of these other compounds I've mentioned, such as skullcap and berberine.

Re: Potential "Patch" for AS [Re: PainintheAS] #283904 01/09/20 07:00 AM
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I don’t know the statistics on the age of onset of S./AS In regards to HLA-b27 + vs. -, but what painintheAS says makes sense in regards to me at least because I didn’t get symptoms until my early 60’s and the rheumatologist said I was in the negative camp so maybe it took this slower time to develop. Because I’ve have this harsh flare at the end of a viral infection which I can’t seem to completely shake I visited the rheumatologist’s ARNP who I found refreshing and quite open minded. From her point of view the infection somehow ramped up my immune system which is misdirected at my tendons. I was asking her about Enbrel vs. Remicade ( much cheaper in Medicare) and she said Remicade while even though infused and is longer acting can be administered in lowered doses. She also said that there are so many proteins responsible for the inflammatory pathway of which TNFa is only one and they are not there yet in determining matching an individuals chemistry to the best drug for them. In fact she said there is a company that tries to do this that they have been testing it and the results are not consistent as the immune system is so complicated. In any case, never to do with any active infection. I told her about individuals on this forum and another I frequent who have drastically altered the course of their disease through diet, although probably quite drastic for some of us. She totally supported my efforts with my ND who today drew my blood for a Cyrex Lab antibody pathogen test. She had told me that during/after my use of Rifaximin to take up to 100 billion probiotics not caring which individual strains but first she said without prebiotics which I didn’t have, but finally procured but now as I pointed out to her my food is full of prebiotics ( like a jar of honey my neighbor gave to me whose bees were ever present in my garden during warm weather), she didn’t care anymore because if I get SIBO symptoms we will repeat the test. I would think this is the way to see after all if Rifaxamin works. I wish Ubiome had not run into financial trouble but I’m guessing tying one’s specific microbiome to a disease is hard to do even though there has been these studies as pointed out. The only way to really change it seems to be from diet. Anyway next week sometime I will be trying Prolon mimicking fast for 5 days with the option of repeating it the following few months.

Re: Potential "Patch" for AS [Re: PainintheAS] #283926 01/14/20 09:34 AM
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I found an interesting prebiotic/Iod source : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5906548/
Any contradictions with AS I have to take into account? Any one tried?
thanks


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Potential "Patch" for AS [Re: PainintheAS] #283939 01/19/20 03:31 PM
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Coming back to the link between eosinophilic involvement with over production of histamines in inflammatory mediated conditions:
I am not an expert. Just exploring:
https://www.ncbi.nlm.nih.gov/m/pubmed/11398076/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4713664/

When your immune system detects bacteria, viruses, or other “foreign” substances, it triggers your body’s inflammatory response. During this process, white blood cells are sent to the site of the injury or infection, where they release chemicals (such as histamines) into the blood or affected tissues to protect your body from these substances. The release of these chemicals promotes blood flow to that area, and is responsible for the redness, swelling, and pain that comes with inflammation, according to the U.S. National Library of Medicine.


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Potential "Patch" for AS [Re: achala] #283954 01/21/20 11:30 PM
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Originally Posted by achala
I found an interesting prebiotic/Iod source : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5906548/
Any contradictions with AS I have to take into account? Any one tried?
thanks


So, one part of that study suggests that there is a decrease in firmicutes and an increase in bacteroidetes (the ratio skews.) In HLA-B27 (and I believe in AS) the ratio is skewed such that there are more firmicutes and less bacteroidetes. In the paper, in my first post, I showed a study on Rifaximin and how it alters the bacterial ratios in such a way to increase bacteroidetes and decrease firmicutes, the same thing this fiber seems to do. So, I would think this is a very beneficial fiber to be supplementing with.

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