Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Potential "Patch" for AS

So, some updates that I think are interesting. I have been researching a bit more and have come across a number of different things (one relatively well known): Peony Flower extract, Thunder God Vine, Boswellia (AKBA,) Jatrophone (from "yagua rova," a Paraguayan remedy,) and possibly Wnt pathway inhibtors (like Harmine, found in ayahuasca brews, and peganum harmala seeds [also known as Syrian Rue].)

It appears that the compounds in the Peony Flower can calm the immune system, so this is a different approach to the standard NF-kB and TNF-alpha inhibition. While this does have analgesic effects by inhibiting these signaling pathways, it also has immunoregulatory effects.

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Link 2 (The characteristics section)

Thunder God Vine has strong immunoregulatory effects, as well as some other effects that may be potentially concerning to some (such as anti-fertility, however, it is reversed upon cessation of taking it.) Another concern is that it is toxic to the liver. However, this can be countered by taking it with either curcumin or having it in a "licorice processed form." See the links below

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Boswellia has been used to protect cartilage and has been used in clinical trials for AS. It is a 5-lipoxygenase inhibitor and a glycoprotein inhibitor (similar to baicalein in skullcap, which is also a 5-lipoxygenase inhibitor and glycoprotein inhibitor [aka P-gp inhibitors.] Note: P-gp inhibitors reduce the body's ability to remove compounds from the cell, so it can potentiate (or make stronger) the effects of other drugs/compounds.

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Jatrophone B has a significant ability to reduce lesions and damage in the intestines. This may be particularly helpful in alleviating inflammation in the intestines for those with HLA-B27 related issues, as well as a few members I know who have had their systems ravaged by multiple infections here on the forums.

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The Wnt pathway seems to be linked to bone formation in this study. As mentioned above, Harmine (do a quick google search) inhibits the Wnt pathway. Harmine/Harmaline is found in Peganum Harmala seeds and is usually used as an alternative (a harsher one due to the harmaline being a little more sedative) to the Ayahuasca vine (banisteriopsis caapi.) These are used as MAOI's to inhibit the breakdown of DMT in another substance, usually mimosa hostilis, to keep the DMT in the system for longer and potentiate the trip. DMT is also a strong pain reliever but that is beside the point of this post. It turns out that bone formation in AS could possibly be inhibited by taking the MAOI harmine. This could stave off the bone destruction that occurs, though would have no effect on the inflammation, at least directly.:

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I hope this information helps and can provide a healthy alternative to someone willing to try. Once again, take all of these statements with a grain of salt and do your own research before trying anything. Start low dose if you do decide to try and work your way up.

P.S. I am currently trying peony and Boswellia. Boswellia gave me the best sleep score I've ever received in my sleep tracking app. I consistently have low sleep scores around 60%, however, on my first night taking it I received a sleep score of 92%. In my entire 6 years of using this app, I have never scored that...ever! Then I stayed up too late the next night, and went to bed late and for a shorter period and received 83%. This is very very interesting to me. More updates in the future.

I am also looking into getting stem cell treatments as I have had some flares related to dietary things I had tried and an unfortunate accident with an antimicrobial regimen I ran while also trying some other compounds. Clearing my gut with antimicrobials made my intestines a little more "leaky" and I had a massive reaction to another compound I normally tolerate just fine. I was in excruciating pain and unable to move for approximately 10 hours. While these compounds help, they can never stop something like this from happening. Stem cells are the big guns that can rebalance the immune system and bring more T-reg cells.

That's all for now folks!

So, new developments...

I did a gut cleanse because I was having persistently increasing pain in my back. At one point I couldn't bend over to touch my knees and this came straight after doing quite well for a while (I subsequently changed my diet by eating more goat cheese, which I subsequently will address.) I then did a gut cleanse which consisted of oxy powder to clear things out and Metagenics Candibactin AR & BR for antimicrobial support. I've come to the conclusion that bacterial load is extremely important for me to keep pain low, as suggested by many other papers I've posted prior. However, during this protocol and doing a lot of liquid cleansing and gut blasting, I believe my intestinal permeability did increase to some extent. I believe this to be true because I took a supplement (Tetrahydroharmine/Harmine) that I've taken many times before and had a SEVERE reaction during this Corona Virus craze. What ensued after that point was the worst 3 day period of my life and, more immediately, the most painful 10 hours of my life. It turns out that tetrahydroharmine affects the WNT signaling pathway (related to bone formation.) Since my gut was leakier than normal, I purport that I ended up leaking a significant portion into my bloodstream which upregulated a ton of the already upregulated bone destruction/resorption that goes on. Within just 10-15 minutes my heart was beginning to beat more rapidly and I was beginning to ache pretty bad. I tried to just stay calm and sleep it off but I feared that something was going to happen. Upon waking...I was essentially paralyzed. My pain was so bad that rolling a few degrees to the left or the right was pretty bad. Bad enough to the point where getting up was nearly impossible. The worst was yet to come...

About 2 hours later, trying to figure out what I could do to reduce my pain...I got my laptop and started reading when suddenly I had to sneeze. Oh...my...god. That put me at 9/10 burning pain that lasted at this intensity for a good few minutes. This pain dulled to an 8, however, I was no longer able to do anything. I thought to myself, I need to go to the hospital and get some sort of injection to quell this inflammation, or else I am going to do damage to myself. Unfortunately, with the coronavirus beginning to surge, I was ultimately unwilling to risk it and just ended up staying home and taking the pain. After about 10 hours, I could move enough (by putting my arms under my back and hands flat against my bed, lifting myself with a push and moving horizontally in small motions.) I then let myself fall onto my feet out of bed (painful, but far less painful than using muscular control.) I was even having nerve conduction problems in my ankles as I walked. I could barely swing my legs forward with each stride due to lower lumbar pain as well. This was BAD.

It took two days to begin to walk semi-normally and I could not even stand up and swing my leg backward using buttock musculature, nor could I bend forward more than a few degrees. I really feared I had done some severe damage. Luckily, within a few more days a lot more movement returned to me. However, this spawned some very extreme measures in me. I realized that liquid oxy power cleansing was likely to blame for increasing permeability because having a lot of liquid in a bag full of holes (analogy) is just going to increase the rate at which things spill through it. Think of filling a bag with stand and poking a hole in it with a needle, versus filling it with water. The water will spill out much faster. So, I discontinued oxy powder cleansing. I also cut out all sources of food that had bacteria, so this meant that even though I had switched from regular cheese to goat cheese to reduce the carbs...I now eliminated goat cheese. I eliminated eating nuts (and am now eating reduced amounts) for a while, as well as have been taking psyllium seed powder again (as I linked that it helps normalize intestinal metabolite production of butyrate and propionate in HLA-B27 rats) as an agent to keep me motile under all circumstances (whether using Candibactin or not.) I can report that the following week was quite a profound shift for me. I have less pain now than I have had since basically starting Rifaximin. Rifaximin worked very well for me but my increase in eating goat cheese because I thought it was safe for me was counteracting Rifaximin's benefit. I now can bend and do things that I was doing in my physical therapy for my knee surgery without pain that I would have variable pain on various days before. I have had a straight run of no pain for weeks. The only time I have pain is if I lean forward very far to try and touch my face to my knees if sitting pretzel-style. The pain I feel is actually in the spine and not the lower-lumbar, which means I have some disc degeneration or nerve-related things to address from all the inflammation that's gone on. Everything else is pretty much ok. There is some nerve impingement in my right buttock after that massive bout of inflammation so that when I lean over, my nerve running through that buttock sends weird pains down into my right foot. However, I can still do things normally. What I have learned is that keeping bacterial load to a minimum is essential for me. This is further confirmation of my suspicions from the beginnings of this particular forum posting.

To test this from the other side, I took a probiotic that has clinically tested strains as being helpful, and my pains and gut irritation began to return. I took the Candibactin to eliminate them again and the pain has disappeared and I am now back to no pain for a whole week again. For me, this illustrates that I likely have upregulated immunity and hypersensitivity to bacterial cell walls. Of interesting note is that while on the probiotics that hurt my guts and started giving me more pain, my episcleritis (inflammation and redness in the eye) went down considerably. This likely suggests that some bacterial strains can mitigate the production of various other products being created that my body reacts to.

That's all for now folks!

Hey folks, I was digging through my stool samples when I read a name I recalled somewhere in my research. It was B. vulgatus. I then dug through my notes and I found this:
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After my infection from Mexico, I had the pathogen, plus dangerously high levels of vulgatus. This is likely what started everything!

I then found this:
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So add this one to the list, on top of Klebsiella. This one can enter the lymph system as well as other parts of the body after degrading the gut lining. So, this further illustrates my theory that things in the lymph are causing the body to attack itself (including carbs...and now possibly this bacteria) and that these lymph nodes are right where the most pain is in the SI joint and lower spine!

Oh wow PainintheAs you went through a lot but somehow you have figured how to be out of pain and I gather that it is keeping bad bacteria out of your gut that works but you know we are full of bacteria so I don't know how something like candibactin distinguishes between the good an bad. Reminds me to go back on some oil of oregano. I've been on this Viome diet but it doesn't help at all and I can't believe it's my chocolate cheat, but maybe it is. I mean I am eating way less starch and more veggies than ever before, but it doesn't matter I have like tendon/muscle pain all over my body and being stuck at home and not being able to actively garden is depressing me. I am going to have to go on some drug from a doctor soon I guess. In meanwhile I have some life extension peony immune to take, and darn it I forgot to ask my ND about taking some thunder god vine. Maybe she's against it. I did mention that there's this prevotella histocola that some Yale people are trying to patent that significantly lowers inflammation and treats autoimmune, probably just in mice, but it's naturally occurring in people. Apparently I don't have that in my microbiome. I want it! https://patents.justia.com/patent/10555975

Let me just state that you have a LOT going on in your body. Given that you reacted so poorly to Rifaximin (known to be low in side-effects) and have had many infections, as well as pain all over your body...I'd posit that throwing any new bacteria in your system just risks that it could leak out from the gut and get into other sites. It is my opinion that you have a very leak gut due to all the inflammation and infections, etc. You should seriously consider working on a leaky-gut elimination and healing protocol. Candibactin has no ability to distinguish good from bad, so it will kill some good things too. You have to replenish the good ones you've lost, only after you seal the guts back up (if they are very permeable to begin with.) I am going to be trying GutConnect 365 as it contains many ingredients known to bolster a healthy gut barrier and repair the intestines. It also comes with a 60-day money-back guarantee, so I've got nothing to lose. I would think you need this far more than I do. I would NOT recommend you putting another bacteria into your system until you begin to repair your leaky gut.

6 months later:
Daily:
400 mg berberine
Collage twice daily
Good probiotic one pill per day
Vitamins c each morning
Zinc
Vitamins B3 several times per day
Boswellia
Chinese skullcap every few days
Omega 3 2000 mg
Selenium + lugol solution couple of times per week
No diet
Pain free
This is how the mind works

Skullcap is great, and a lot of the other things I've written about and tried. I have unfortunately found out through repeated trials that I am no longer tolerant of most probiotics. I can only seem to handle a select few strains. My HLA-B27 contribution is definitely flagging a lot of stuff in the gut for inflammation. I have brought my pain down quite far as well, to near zero. However, I still must maintain a decently strict diet (ketogenic). Glad to see all this is working for you. Seen any pattern in your flares prior?

By the way @achala, you (and one other person on reddit) are now my first successes in treating this as a systemic inflammatory issue with regards to response to bacterial agents. Most of the things you are taking have both an anti-inflammatory effect (reducing TNF-alpba response to lipopolysaccharide and anti-viral/anti-microbial properties.) This is great news. I have another post I need to write about a study (for HLA-B27+ individuals) which basically confirms ALL aspects of my theories up until this point. Can't wait to put it down in the forums.

There are a couple of supplements that might be worth adding:

Punicalagin

https://www.hindawi.com/journals/bmri/2020/4918239/

Allicin

https://www.hindawi.com/journals/bmri/2013/171573/

I started taking both. I don't know if punicalagin is doing anything for me but the allicin has had noticeable effects. I have way less bloating and "noisy" intestines. My AS pain seems to be reduced. I still have morning stiffness but reduced and my usual diarrhea but less and with less urgency. The impact may be dose dependent and I take 15 mg a day (3 enteric-coated pills). I still eat my normal diet with a lot of starch.

Hey, thanks for the post! So I have allisure here as well but didn't notice much from it. I've tried to eat little carbs as of this last weekend and it completely screwed up my guts. I'll try taking the garlic allicin, however, the fact that allicin worked for you hints at the fact that you likely have an overabundance of methane producers (I think, or it's possibly hydrogen...pretty sure its methane though). Also, for your diarrhea, I would look into psyllium fiber, as it normalizes the propionate/acetate/butyrate ratios. If I don't eat this special bread made from psyllium fiber (super low net carbs so it doesn't hurt me) I have stool that bothers me (feels acidic etc). You can either buy the powder for psyllium fiber online or get this bread (if you are in the US). It is expensive, but it works wonders for me. I got it at www.uprisingfood.com and it has helped tremendously. I will read your links about punicalagin too. Hope you are well!