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Joined: Dec 2013
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Not joking, I have about 70 bottles of supplements and maybe I use about 10. Every time I'm certain that I've found THEE pain relieving combo, I order it and soon after find a really compelling case against its use. I refuse to throw them away because I might just find an even more convincing article to make me use it again.

Great article from CKresser. I hate liver but force myself to eat it every week. The farm I go to just gives it to me. They gave me a heart and the tongue for free too. Unreal disgusting but super nutritious. Whatever it takes, right?

I agree, throw in a harmless B vit and see how you feel. I always wonder how long I should give supps, if I dont notice a difference, before I give up. I'm guessing they vary in that sense as well?

The more I read into the seres health info, the more anxious I get to try some. Let me be your lab rat, Seres! I sent them an email to see if they'll have a vid or transcript from their presentation coming up this Friday.

I'll have a listen to that podcast. I got stuck halfway through the briggs ibd write-up. I'll get back at that again soon.

How are you feeling? You took your dose up nice and fast. No mention of elevation in pain? You are all good, I assume? I haven't noticed added pain myself.

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Haha, I'm not at 70 but my unused supplement drawer is growing.

I would love an inside look at Seres + these other microbiome biotechs. Looks like their presentation won't be that long . Attendees have the opportunity to hear their "Next Wave companies" stories in a 9-minute 'elevator pitch' format and to meet their management teams." Sounds like an investment pitch more than science frown.

Personally still nothing to interesting to note, aside from the continued proliferation of farts.

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My pain level this morn was at about a 0.5. Not saying that it's bcuz of the pstarch(I do a million other lifestyle management things on top) but I know that it's not increasing my pain. Or yours. I was convinced in my head that the starch would hurt me. I'm throwing placebo out the window. My gas is far less than it was the first couple of days smile

Yes, it sucks that science needs money. It'd be awesome if certain taxes/levies could be administered and allocated to fund carefully prioritized studies, such as this one. Healthy people= a more productive society. As Mark Sisson and Dvae Asprey said on their podcast together, trillions of dollars could be saved and made if people simply ate a healthy diet similar to what they recommend. We need to start teaching and training the food police! Maybe people would be less inclined to commit crimes if they felt healthier in the body and mind?

What do yo do in the way of stretching and exercising? If any?

Keep on fartin', Coopatroopa.

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What's your normal pain level daily? I actually have psoriatic arthritis as opposed to AS (but because I'm HLA-B27+ and have spinal involvement I consider it a close relative to AS, and I suppose because I tested for high levels of klebsiella as well). I think about mine more on an affected joints and their current pain vs whole body, as they seem to vary a decent amount day to day.

What meds do you take currently? Supplements? I'm currently only taking an Rx NSAID (meloxicam) and LDN. I was on sulfasalazine for a month about a year ago, but stopped that against my rheumy's wish for fear that it's antimicrobial effects would further damage my gut. I think she's ok with it now that my CRP dropped into normal range with the no starch diet.

I played rugby and did crossfit before my body started to break down. Now I try to keep up that intensity on the indoor rower. That's one of the reasons I'm fighting to figure this out, I miss that tremendously.

I'm not concerned about companies trying to make a profit, I just wish cures were more profitable to research, and that I had enough money to be in that room listening in and investing haha.

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My pain level has been between 1-5 for the last few months. Recently, it's been mostly in my neck and hip flexors. NSAIDS did nothing for me at all. I started enbrel about three years ago and had immediate and almost perfect relief. I've had a few attcks of iritis which is my driver to figure this out. I'm lucky enough to be playing ice hockey once a week. I'm not trying to rub it in but I truly appreciate every second of it. I had to take a long break from it bcuz of my back. That's awesome that you got your crp's down through nsd. It's a tough diet to follow. Makes any other kind of future diet that much easier to take on, doesn't it though? I feel your pain(literally) and really hope you'll be able to get back out on the field. Hockey is a tough sport but pales in comparison to rugby. A true man's sport right there. Union or league?
About 8 months ago, I started to wean down on my enbrel injections and the pain went up again. I've gotten really strict with diet, exercise, dynamic stretching and researching. It feels like I'm getting closer and closer to properly managing this condition. I'm nowhere near remission but I'm beginning to feel confident in my will power and ability to crush this thing.

For supplements, I take vit d(5000 iu about every second day), vit k(most mornings), l-glutamine( about 5-10 mg,3 times/day on empty stomach), gelatin powder(1tbs/day on empty stomach), collagen hydrolysate(1 tbs on empty stomach), omega 3(triglyceride form at about 2400 mg/day epa/dha) dr ayers said that one can control inflammation with epa/dha, prescript assist, pro-3 AOR, glucosamin and chondroitin(rarely), magnesium(400mg roughly every few days), vit c(about 500mg/day), acetyl l carnatine(before workouts) taurine(before workouts) and occassionally some liquid minerals(ie. zinc, boron). Not really a supp but I eat about 3 tbs of coconut oil/day and about one tsp of red palm oil every couple days or so and now 1 tbs of Pstarch and tons of fermented veggies. As many different kinds as possible.
I asked my rheumy if I could get on LDN but got stiff armed pretty quickly. It was a brief, non-discussion. Do you find it helps quite a bit?
I looked a bit into the investor side of seres but believe I'm short of funds by approximately 500k frown Somebody is gonna make a killing off of this kind of technology. I don't know if it will necessarily be that company, but somebody will. I gave them the impression that I'm a serious Don. "I have prior engagements this Friday and won't be able to attend. Can you forward through a transcript of Dr. Berry's presentation and further info regarding investment potential?" Pfffff! I'll be cooking liver stew and can invest only if they accept bottles of unused supplements.

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It was union, I was never any good, but it was a fun thing to do in college.

Solid list of supplements, any of those that you think have made a solid difference?

As far as LDN goes, I think it might have helped a little? But couldn't say for sure. I think LDN worth trying for people, but it's not a miracle pill. Can't believe your rheumy was so dismissive; I originally got my Rx for it from a functional medicine dr. but at my last appt with my rheumy, she was very much on board with it. Said she had another patient request it from her. She even asked for the name of the company that I got my helminths from so she could look them up.

I've upped my veggie intake and have been getting an upset stomach every night since starting that 4 days ago. I started GI revive yesterday, and had half an oz of 100% bakers chocolate (http://caloriesproper.com/?p=1583) with my PS tonight. Folate came in too, so I've been doing 800mcg a day of that.

Good plan with the investor angle, lemme know if you hear anything back, but I won't hold my breath haha.

Last edited by coopatroopa; 03/30/14 12:51 AM.
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Hey Thanks cooptroopa and coat tails, for continuing to post about your resistant starch experimenting. You guys are my virtual guinea pigs - hope that's ok.

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I added another tbs of pstarch today. No extra pain yet but at this point, I'm not expecting there to be. I used to eat 1 tbs of rice each day trying to build up a tolerance. At about the 3rd day, I would always give up. I desperately want to be able to eat rice again but it's one of my worst triggers. It makes traveling a bit more difficult without it, and it's so cheap and easy.
No problem, Copen. Feel free to chime in any time and let us know how and what you're doing.
As for supps making a difference, I'd have to say that I really don't know smile I'm confident that for the most part, it'd be really hard to cause any harm to myself by having too much of it/them for one reason or another.
What do you use? and do you have an insta get out of flair, go-to secret combo?
Let me know if the folate changes anything.

Probiotic chocolate?! How'd it taste?
What are you eating in the way of veggies? I mean, what kinds and how are you serving them? How much were you eating before your uptake?

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Right now I just use (all per day)
1) Rx - Meloxicam (NSAID) 15mg
2) RX - LDN 4.5mg
3) Supplement - 800mcg folate
4) Supplement - 2 tsp GI Revive
5) Probiotics - ~4 AOR Probiotic-3, 2 Prescript Assist, 2 Garden of Life, 1 Align
6) Probably about 10oz of sauerkraut
7) 4-6 tbsp of potato starch

Plus the 35 (or less, most likely less) helminths. I got nothing to get out of a flare, haha.

The chocolate's actually supposed to be a prebiotic. I just got Ghirardelli's bakers chocolate at Whole Foods. It was pretty damn good, first thing I've had that's not on the paleo autoimmune protocol in like a year. http://ajcn.nutrition.org/content/early/2010/11/10/ajcn.110.000075.abstract

Before starting the potato starch I was basically down to zero veggies except for a pound of sauerkraut every day. Since starting I've been making smoothies in my Nutribullet with bok choy, radishes, avocado, and arugula.

I don't understand most of what's said in this paper http://yadda.icm.edu.pl/yadda/element/bw...1104/c/main.pdf but I think it supports the Treg theory.

"Hence the proposal and later modification of the ‘‘hygiene hypothesis’’—changing diets, improved sanitary conditions, increased use of antibiotics, etc. prevent the immune system from being adequately ‘‘primed’’ during its maturation, resulting in Th subset imbalances, Treg cell deficiencies, and other faults that predispose to immune diseases."

Last edited by coopatroopa; 03/30/14 06:52 PM.
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I finally got around to reading the briggs protocol. Great stuff in there! It's funny that it's completely targeted towards chrones but falls in line with the approach we are taking for AS/PsA. Again, I run into people recommending N-acetyl cystine and glutathione. I'm going to look into those even further before I take the plunge as I know glutathione isn't cheap. I also noticed his rec. for bovine colostrum. I've noticed that DragonSlayer has taken colostrum before, as well. I don't remember in his post wether he was for/against or neutral for its efficacy.

1 pound of sauerkraut per day! You are a beast!
Your veggie discomfort could just be a sudden change in diet? Lots of people here and with auto immune issues have troubles with avocados. Take that one out for a few days and see how it feels. If you haven't tried that already?
You've been autoimmune protocol for a year. Have you tried introducing other foods aside from veggies? Ie. grass fed ghee, seeds nuts etc as per her reccs. Are you similar to me, whilst following the AIP, in avoiding the starchy roots and tubers aspect?

I try so hard to understand studies like the link you posted! Little snippets of info pieced together can make a huge difference. I need to be mindful not to misinterpret info and draw incorrect conclusions. i did take away from it the fact that twins were not doomed to the same fate as each other auto immune-wise. That again falls in line with our approach and not giving in to certain doctors' archaic and somehow definite assumptions. I like to side with Dr Ayers when he says that genetics only play a small role. Families usually eat the same food and pass on "grandma's secret recipe" for generations. Unless I have 30 days left to live, I don't want to hear anything about incurable, untreatable etc. Even if it is, give me some shimmer of hope and control so I can be pro- active in a positive state of mind. There's no right or wrong answer here but when you already wake up feeling like your body has been stomped on by a herd of elephants, the last thing I want on top of all that, is for my mind to get crushed as well.

I really need to do some more studying on Tregs so that I can contribute more our situation and discussions.
What did you study in college, if you don't mind my asking?

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