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Joined: Jan 2012
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CoatTails, I don't take anything during fasting periods except black coffee with a pinch of salt. And lots of water of course. I don't want to upset any autophagy process during fasting so don't want calories of which fats have plenty of.

I stopped my Dyclofenac a couple of nights ago. So far a little more lower back niggles, but not enough to worry about just yet. Just enough to be mindful of.

I ate a decent amount of Potatos (cooled for 24 hours first before reheating) for lunch today (post exercise) and no inflammation as a result (that was 4.5 hours ago now).

Still using 4 tablespoons of PS per day. At night mostly in water. I'm addicted to how it makes me sleep.

Eating an apple a day typically which used to give me problems.
And green banana 3 - 4 times per week. The local produce guy thinks it great we want the green ones which we make him go out back and get smile

I'm now eating Cauliflower again which used to give me problems cooked (starchy in NZ). Making a conscious effort to increase my alkaline foods now I can eat more of them.

Went to my local chemist today as my wife said he seemed to know a lot about AS. Turns out he specialises in gut healing and gut bacteria etc and knows an awful lot it seemed to me. Certainly he knows a lot more than any Rheumatologist I've ever come across and spoke confidently about various healing methods. He's a big fan of turmeric as an anti inflammatory and recommended a gut healing product for me (which contains a bunch of stuff but mostly based on slippery elm I gather) to follow for 6 weeks that will tighten/close up the gut. And then pro biotics. Will give it a go a bit later. He knew all about no starch, no dairy etc but also cautioned no starch is not ideal for long run as gut bacteria need a little starch and fibre to colonize which has a relationship to immune system etc.

He didn't know about resistant starch though but was interested so I sent him the coolinginflammation links. Also a link to this site.


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Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand
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CoatTails, FYI - I got some Borax yesterday and mixed up a concentrate and have started on that too.


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Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand
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That makes sense about the caloric intake whilst fasting. I've been trying to just avoid all foods for about the last 5 hours pre-bedtime. Seems to be helping a bit as I've had some incredibly well rested, pain free wake ups recently. In the last 1 week or so, I've had two separate under 1 pain level wake ups. I still haven't taken any enbrel and am now 100% certain that it was no longer helping.
Sounds like you're getting a bit more tolerant to a wider variety of foods. Looks like progress to me.
I love the sleeps from RS too! The dreams are unreal and I wake up often feeling like I've just returned from a native indian vision quest wink
Mark Sisson refers to a study that L. helveticus R0052 and Bifidobacterium longum R0175) reduced measures of anxiety and depression.
Mr.Heisenbug refers to a study that L.plantarum has and can potentially cure eczema.
Natren has testimonials stating that their strains of pro-b's have cured lactose intolerance in people that have had it for over 30 years.
Custom probiotics claim that their strains aid in the alleviation of candida.
At the bottom of that gastalreality link, he shows which strains are especially effective in gut reperation etc.

I wonder if AS were a more common condition(or struck the "right" bacteriologist) if we would find the exact bacteria to help in digesting starchy foods and/or quickly neutralizing K.Pneumonia? Maybe it's out there and I just haven't read it yet?

You're lucky on the potato front. I got scared off all non-resistant starches until my hockey season is done. Sudden death playoff format at this point so max 2 weeks left. When I do start adding starches again, I hope it's just a matter of finding the right ones and titrating up really slowly in my case.

You're lucky to find anybody in person that knows anything about gut healing. Buy that chemist a bottle of gluten free vodka and keep him on your good side;) I went into the arthritis center today to ask about potential FMT clinical trials, gut repair etc. They knew nothing of it or about pre/pro biotics, gut microbiome etc. and whisked me away with the homepage link to pubmed:( What do these people do all day? How is a semi-illiterate, beer league hockey playing, poker player far more up to date than the biggest arthritis resource center in Canada??? There's my gripe for the day.

I've been taking that ionic boron since the last time I said I would. With so much other stuff going on, it's hard to say what difference it's making, if any. You have the borax powder though which makes it easier to follow the exact guidelines from that article. I'm really interested to know how that works for you.

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This paper is pretty great: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3204318/

"We hypothesize that HLA B27 influences the composition of the body’s endogenous flora and that this ‘B27-shaped flora’ causes ankylosing spondylitis."

"We have entered an era in which some have begun to explore the benefit of fecal transplantation to alter endogenous flora "

To me that translates to:
HLA-B27 altered flora can = AS
Fecal transplants can hypothetically fix altered gut flora.

I like where his heads at.

The guy that co-authored it seems pretty legit too: http://en.wikipedia.org/wiki/James_T._Rosenbaum

CT, I think you'll find this interesting regarding the stuff heisenbug has been talking about:
"Colitis in the HLA B27 transgenic rat model can be effectively prevented with antibiotics, and this benefit can be maintained if the rat is colonized with Lactobacillus rhamnosus but not by Lactobacillus plantarum 31"

Only a mouse study though, so take it with a giant grain of salt. I actually got some of the L. plantarum in the mail yesterday, gonna add it in the mix. I could only find the Lactobacillus rhamnosus from 1 company I trust and it requires it be kept cold. Not ordering it now, but maybe in the future.

I've also set up appointments to do FMT at the end of May. I'll be doing a course of antibiotics pre FMT so I'm trying to figure what the best course of action is right now - keep on with the PS or just wait for the FMT and restart after with probiotics and poop pills. Anyone have any wisdom here?

Last edited by coopatroopa; 04/25/14 03:56 AM.
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Thanks Coopa!
I liked reading this part too.
Lactobacillus rhamnosus GG, is available without prescription in the United States. Accordingly one test of the hypothesis could involve assessing the ability of this probiotic to prevent attacks of acute anterior uveitis in patients diagnosed with AS.
http://www.customprobiotics.com/custom-probiotics-11-strain.htm

I think us AS'ers have a telepathic connection somehow. I swear, just two nights ago, I did an order for about 10 different pro/pre biotics based on that gastalreality link. My buddy has eczema so I got him a couple bottles of the L. plantarum too.
After I ordered everything, I decided to check back on the http://thepowerofpoop.com/epatients/where-to-get-fecal-transplant/
I thought the last time I looked there was only one place(Taymont) offering FMT's to non-C.diff cases. This time I noticed the clinic in Essendon, VIC for the first time and saw that the procedure was less expensive and the cost of living for up to one month would be way cheaper there as well. Gears got turning. I know that in the near future I'll need to get one and same as you, wondered if I should just save my money on the probiotics etc. until afterwards?
I'm excited that YOU'RE doing this, Coopa. From what I gather, your diet, lifestyle and understanding of AS is top notch. For my own selfish reasons, I'm happy to know that it will be done in a very controlled environment.( you being the "environment") You'd be an almost useless comparison/test subject if you were out wolfing down Mcdonalds and crispy cremes day in and day out.
And I'm stoked for you obviously!!! That first article speaks highly of their theoretical efficacy for those with AS. Mind me asking where you're getting it done? Did they say how it'll be administered? You mentioned pills but is that just for after?
Yes, I'm curious too and hopefully someone can drop some wisdom regarding your question?

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hey guys,

i'm following your thread since the beginning. Thank you for your research and experiments!

Originally Posted By: coopatroopa


Just YESTERDAY I have started to translate this article for the Russian AS community! To raise an awareness, so to say.

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You're awesome CRV!
I've always thought about how tough it'd be to not speak English and have a condition like ours. I get a lot of solace and hope from reading articles like the one above and have made it through some really tough times by the help on this site.

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You notice anything from the borax concentrate? How does it taste?

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Maybe/maybe not. Hard to tell. I'm not sure if its related or not, but the first/second day I had a bit of a flare up in the middle of my spine.... not the usual base of spine. The sort of pain that causes shortness of breath most exaggerated when you lie on your stomach and try breathing deeply which causes spasms. And that night when sleeping, breathing in caused sharp needles of pain to shoot out in all directions from the middle of back area. I wondered if it was possibly a Herxheimer reaction which they talk about as a possible side effect but I don't think so.

On that day I was also about 4 days into no NSAID and I also massively overate for lunch. I really over did lunch but it was one of those situations where I had a lot of food and I can't bring myself to throw any away. (Liver, Sausages, bacon, eggs, potatoes, onions and before that a green banana coconut cream smoothie with protein powder and blueberries). I really felt bad after that all day wasn't even hungry 5-6 hours later at dinner. Just massively overate after doing my workout. So I suspect that had more to to with it.

Since then I took another NSAID, it came right within about 12 - 16 hours, and I got away with 3 days without needing another NSAID. And now I'm a couple of days into no NSAID again, but after eating a small amount of cooled Basmati Rice last night for an experiment, I feel I might need another NSAID tonight as inflammation is on the rise at joints around base of spine. I had a fantastic sleep though!

Too many different things going on to know if any are making a difference. Nothing sticks out massively anyhow. Nothing to make me fear a massive reaction to anything though. I'm sold on Potato Starch that's for sure.

The Borax doesn't taste of anything the way its mixed up. For a normal dose, you mix 1 teaspoon of borax into 1 litre of clean water. That makes your concentrate. The dosage is then 1 teaspoon of the concentrate into water or with your meal (I put it in water and have with a meal). So there is hardly anything to taste it is so watered down. I'm having 3 teaspoons per day at the moment which should yield around 9mg of Boron (3 per teaspoon). I'm not doing the massive 100 mg dose to treat candida or anything. That can taste soapy alkaline I read.


_________________________________________________________
Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand
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I've also gave a bag of Borax to my Dad who has recently been diagnosed with Multiple Myeloma (cancer of blood plasma) and is currently cracking ribs by simply bending over and picking things up! I think he said its due to leaching of calcium from bones making them weak. I read that borax can reduce leaching of calcium by up to 50% so will see how he goes with it. But that's another story. He's got a lot of different problems going on with Scleroderma and skin infections.

Interestingly he is now taking Potato Starch as well which has helped his sleep and now appears to be fixing his BM's which he's had lots of problems with.


_________________________________________________________
Diagnosed AS year 2000 age 26; First onset of major symptoms came with severe food poisoning leaving me in chronic pain hardly able to walk/sleep/sit - never been the same since; HLA-B27 positive; bouts of iritis; no biologics ever, controlling with NSAID's and diet but trying to get off NSAID's through various "biohacking" experimentations; Live in Auckland, New Zealand
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