Posted By: CoatTails CURING AUTOIMMUNE DISEASE - 03/16/14 01:25 PM

Incredibly inexpensive and safe. Hard to argue with that. I know you don't like the word "cure," Timo but this may just be it. He claims that genetics play roughly a 3% role in auto immune conditions. Maybe we are not as doomed as our rheumies would have us believe.

Read the comments section of Part I, as well, for specifics.

POTATO STARCH;(or other resistant starch)


VARIOUS HOME MADE FERMENTED VEGGIES;(in comments, he says only use salt so I assume no starter cultures)

DIET(follow his anti inflammatory diet or 'The Paleo Approach, Reverse Auto Immune Disease and Heal Your Body"



NOT BEING "FASTIDIOUSLY CLEAN"(avoid hand sanitizers, harsh cleaning supplies, washing hands etc.)

FMT(if possible)

Happy reading all!!!

Three cheers for Dr.Ayers. Hip hip...
Posted By: MollyC1i Re: CURING AUTOIMMUNE DISEASE - 03/16/14 03:31 PM
That is a HUGE Blog - WOW. Most useful - great post, full of terrif information - a great resource. I have already copied the link to my Dr in the UK and now about to send to a string of friends.

Would love it in book form, but would prob mean a ream of paper and a full cartridge of toner...!!

Good one, thanks for putting it up -

MollyC - (Keeping on Keeping on - as one does !)
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/17/14 05:53 PM
I'm super interested in the idea of trying resistant starch, but I'm hesitant to given the success people have seen avoiding starch. Anybody played around with it?

This corroborates his ideas and are both sources I trust. But they certainly overstep their bounds by saying "But the “no cure” part is probably mistaken. Yesterday I received an email..." K, 1 person, let's declare a cure found.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/18/14 02:00 AM
I will be following Dr Ayers' recommendations as well as I can understand. On top of an anti-inflammatory diet, I will be taking potato starch, probiotic 3. I have VERY bad reactions to rice but seem to be ok when I eat small amounts sweet potatoes and yams. Everybody's gut flora is different depending on the state of their gut, what bacteria is present or missing and what foods they eat, stress etc.

In my case, avoiding starch in it's entirety, in my opinion, has led to even more food sensitivities and intolerances. Look at the people's diets that are following a very strict NSD. Most of us/them can eat only a handful of different foods to avoid flares. The more strict NSD I became, the less enbrel worked for me and I am now flare due to eggs, most nightshades, seeds/seed products. I don't even bother with grains.
Paul Jaminet and Dr Ayers are ACTUAL geniuses in the year 2014. I'm going to give their recommendations a strong go. I will happily guinea pig their theories and anybody that wants to PM me can feel free to check on my progress(or lack of)
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/19/14 05:11 AM
Re-watching that video, it might not exactly corroborate as he was eating white rice which is relatively low in RS ( But it does align the PHD idea that it's a bad idea to starve gut microbes of starch.

Regardless, I'm intrigued enough by the ideas to give it a go. I haven't had any starch (beyond any minute amount in a non starchy vegetable) in a year. So if I do flare up, at least I'll be fairly confident in the culprit.

I've picked up some potato starch from the store, I've ordered the 3 probiotics recommended here and I'll continue eating a ton a sauerkraut (it's store bought, but fairly local and supposed to be unpasteurized and probiotic

If only we had easy access to FMT to combine with this frown.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/20/14 01:15 AM
I'm right there with you coopatroopa. It's very hard to argue with Paul jaminet and/or Dr.Ayers' points.
A friend of mine(with AS) started with only 1tsp of potato starch/ day an is now up to about 5tsp/ day a few months later. He went from one bowel movement / 3 days(like me) to a "glorious" 1-3 bm's /day. He hasn't added the fermented veg or pro-3 yet.
I'm taking a PEG based laxative whilst waiting for my orders to arrive. Hoping it will help.
I too have the same brand of sauerkraut but have recently been making my own because in the comments section, Dr. Ayers suggested that one should only use salt , veg and water. I like the taste of the sonoma brand and still eat it but it has bacterial cultures in the list of ingreds. I don't know if that helps or hurts but I'm just going to follow Dr. Ayers' exact recs. and go home made from here on out. The variety of veg can't be found in stores, either. He also mentions something along the lines of that sometimes a juice fast MAY work because of the bacteria or foods "catching, or sticking" to the gut wall and enable the user to tolerate certain foods afterwards because of it. I believe her name is Andrea on this site(aka but she documented her fast and can tolerate tons of stuff I can only dream of.

You're exactly right, add it and you'll know if that's what's causing the symptoms. I ate a half of a really small yam last night again and seemed to tolerate it pretty well. It didn't change my pain level of about a 3 that I've been in for the last few weeks.

If FMT's are not more easily accessible in the VERY near future, I will be forced to max out my credit card. A weekend in vegas, $1659. An ultra-hd television set, $4899. Another man's poo up you bum...priceless wink

Thanks for the freetheanimal primer for newbies link. I couldn't find that before.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/20/14 06:37 AM
Your sauerkraut lists starter as an ingredient? Or did you read that it included somewhere else? This is what mine looks like

I'd love to do homemade, but I don't have anywhere in my apartment where the temperature is consistent enough for me to feel good about fermenting in house. Whole Foods in my area have a couple of other good looking fermented veggie brands so I'll probably try and and switch it up regularly.

Do you know if your buddy noticed any decrease in AS symptoms or has it been limited to digestive/gut improvement?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/20/14 05:24 PM
Sent them an email and they confirmed

"Hey Cooper!
Thanks for the kind words. We love hearing that you like the product.
We really and truly only use those three ingredients. It has stood the test of time for centuries, and we have gone back to what works so well. The bacteria is what makes the magic, and we just give it a bit of time. "

I don't doubt homemade is superior, but this may be a fair alternative.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/21/14 12:23 AM
Awesome, Cooper! Nice P.I. work. Definitely an option since those are the only ingredients.
Dr.A mentions to only have those 3 ingreds. in this comment section.

I'm just using 500ml bernardin jars. Bought them at my local supermarket 12 for 10$. I read to burp them(briefly open the jar) two times a day to avoid potential explosion. Leave one inch of room from the top of the jar so that liquid extracted from the veggies has somewhere to go. My fermented veggie techniques are very amatuer. I would try and get recs from somewhere else. We both agree that PHD is an excellent source of info.

I have sauerkraut still sitting under the counter since March 27th. No mold and gets more sour the longer I leave it. We can just scoop off the mold if it forms anyways. I need to learn to be less fearful of bacteria and dirt. He always mentions to not fear public bathrooms, don't wash hands religiously, no harsh cleaning agents(i've thrown away all bleach, fantastik, comet), don't use toothpastes with broad spectrum antibiotics etc. Goes against everything I stand for but he's the boss. I have also started to use soap and shampoo less often as the skin is said to have very beneficial bacteria. This podcast briefly states the same concepts from two people I HIGHLY respect;

My friend has not noticed improvements in AS symptoms but has only just started to implement the fermented veg routine. He also just ordered pro-3. Fingers crossed.

Ya, so funny that we've reverted back to the need for simple foods that our great grandmas would brew up for us. My Wife is from Thailand. They ferment crabs for papaya salad, anchovies and other fish for fish sauce, fermented fish belly curry, unripe mangoes and just about every kind of veggie know to man. Her family is far less scared of dirt than I am/was, as well. Her gut is made of iron! Nobody in her family has anything even remotely resembling any kind of cancer or auto immune disorder. Hmmmm.

Part III came out yesterday! I noticed just before bed time and I could hardly sleep. I've been saving that read for after dinner tonight. I fee like a kid on x-mas eve. I'm tempted to print his whole blog before someone has it taken down for some ridiculous legality or technicality.

Please keep me posted, Coopatroopa.
p.s. I ate half of a small sweet potato again yesterday. Two days in a row equals too much too fast. Pain in the lower back this morning.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/22/14 04:28 PM
I started yesterday with two separate 1 tablespoon servings of potato starch and probiotics (pills + sauerkraut). Nothing of interest to note so far.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/23/14 12:08 PM
I suppose that's a good sign? Hopefully, the time line he states applies to AS as well. With solid diet and exercise, about a few weeks to roughly four months.

I'm picking up my goods on Monday. Did you get the probiotics-3? His studies have lead him to believe that dairy probiotics are "transient" and only provide temporary relief.

Of course they've gone up by 8$ per bottle in the last week frown

You may have read this already but he has some good Q&A's here;
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/23/14 06:28 PM
Yeah, I ordered them right before they went outta stock on Amazon. I've also got the other 2 Richard Nikoley advocates, and 1 other called Align (got that one at Walgreens) that Dr. Ayers referenced in a comment [1]. I've been taking Probiotic 3 with every RS serving and rotating the other 3.

I've also been taking about 3 tablespoons of sauerkraut with every serving.

I also ordered Folate from Pure Encapsulations based on this comment [2]. I actually commented on this right after his post. I found the idea that folic acid potentially increased cancer risk to lend enough credence to the theory that it increases T regulatory cells, that I figured I'd add it in the protocol.

I'm the furtherest thing in the world from a scientist, but the puzzles pieces seemed to fit in my mind, so I bit.

This may also be of interest to you This most interesting thing here is if you look at the American Gut diagrams (of Tim and Jeff, Tim uses and advocates RS, Jeff is the founder of American Gut and advocates a high plant volume diet) in the post "Why Resistant Starch Is Probably Not Enough" you'll notice the proteobacteria band is very small compared to others.

If my Googling served me correctly, klebsiella pneumoniae is a Gammaproteobacteria [3], which would fall under the Proteobacteria [4] band in the American Gut reports. So it seems that these 2 examples are of people who have taken resistant starch and lowered the group of bacteria that includes KP, by increasing the other beneficial bacteria groups.

Anybody with more a scientific education able to chime in here? Has anybody here had an American Gut sample processed that they'd be willing to share?




Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/24/14 12:01 AM
I really hope that heisenbug's suggestion that certain clostridia groups of bacteria are shown to have good starch degrading capability in vitro is true. Do you think following a mark'sdailyapple-esque diet will be high enough in vegetables to be considered a high veggie diet?
Really interesting stuff. Are you considering doing a test through ? There's another one called

In my case, I'm certain that I have a severely permeated gut.(tons of food intolerances)
This article has me wanting to do a check;

In hopes of healing my gut, I drink bone broth, 10-35grams of L-glutamine, collagen, gelatine1-2tbs/day and attempt to avoid stress as mush as possible. I'm taking away from that GSH and N-acetyl cystine might be worthy additions. Thoughts?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/24/14 12:45 AM
I think a MDA diet should be veggie sufficient. I know Terry Wahls probably recommends more than he does, but I intermittent fast to only one meal a day, so I can't handle her "9 cup" volume right now. She also recommends it for different reasons - repairing mitochondria.

That's one thing I need to stock up on is veggies, I've been doing VLC for a while. Time to feed the little gut guys.

I've considered both, but right now it seems they still have kinks to work out, and that they need to break things down a bit more to be more diagnostically relevant. I think they're both very cool, but right now I'm of the mindset that I'm not gonna throw money at things that won't change my treatment course.

For example, if it came back with severe dysbosis, I'm still gonna try this RS experiment. If it came back looking looking like Michael Pollans, that doesn't prove there isn't something off at a more lower/more specific bacteria level than they test for, and I'm still gonna try this experiment. Would it be cool to track changes? Absolutely, but every $100 I don't spend now is a $100 that could go to FMT in the future.

Regarding leaky gut, I had that Genova test done and got the positive "leaky gut" result. Ultimately this test falls under same category I'd put Ubiome and American Gut in right now. Cool to know, but are you gonna stop trying to heal a potentially leaky gut because the test didn't find evidence of it?

Good leaky gut link, very well cited.

I did bone broth + glutamine + gelatin on a GAPs style diet for a while (I was on NSAIDs at the time, so was it like trying to pour a bucket of water on a burning building, maybe, but who knows). I've seen people repeat this advice over and over, but I've yet to read about that many people really succeeding on it?

That being said I have a product called GI-Revive by Designs for Health (I trust them as a supplement brand) sitting around for a couple weeks (that I had previously avoided because it tested positive for starch) that I'm considering adding in to the mix next week. It was recommended by a microbiologist professor/PHD who put his IBS into remission using an interesting (and decidedly not GAPs/SCD style diet) protocol.

He's a member of the fecal microbiota transplant group on Facebook, and he wrote a pretty comprehensive guide to his plan. If you send me your email I think you'd enjoy a lot of his ideas. Anybody else that's interested, I'm happy to share, just let me know.

Regarding current status, anecdotally I would say I've noticed the increased gas, and an increase in "interesting TMI" (increased urgency, poos that are actually just farts, very minor, stomach pain, etc).

It's worth noting I started helminthic therapy about a month ago, but didn't notice any symptoms from the worms (assuming they made it in alive), so I do believe any immediate changes (like the gas) would be from the RS.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/25/14 06:37 AM
Arrgh! I ordered the whals protocol but it wasn't in my po box today. I'm really excited to get into that but am about two weeks into "The Paleo approach" diet and lifestyle. There are some things in her regimen that I can't follow strictly at the moment. The Circadian rhythm aspect being one of them. Can't say I feel that much better but I'll stick with it for at least 4 months just to make sure. Not sure if you've read it but it's a super thorough and comprehensive approach for every type of auto immune condition. The major issue obv is that it pays no mind to LSD or NSD and to a certain extent, sort of discredits its validity. I've read too many nsd success stories to dismiss it myself. NSD didn't help as much as I was hoping it would. Even with the complete elimination of dairy. Maybe I didn't give it a long enough go. I did it for only about 1 and a half months.

This lady had good but limited success on the GAPS diet but is really happy with her progress on the paleo approach. Her symptoms were very similar to mine reagrding pain levels and sleep times before waking from pain etc.

I discussed that same topic with my friend in about the gut test. Regardless of where my it's at, I'm striving really hard to fix and optimize my gut lining and microbiome anyways. He made one good point. If my gut is already currently completely screwed, I might be more inclined to try an antibiotic protocol and then fix my gut up afterwards.(hopefully) If it's in so so shape, I might be better off just trying naturally with food and supps. But there are sooooo many tests that one can do. False negatives and false positives are all over the place which can really throw us off. And as you said, they steal valuable, hard earned money away from the one potential "magic pill" in FMT's. Paul Jaminet and Dr. Ayers are very confident in their efficacy. The only place I've found is in London at roughly about 10k. I assume we would fall into the "more stubborn and refractory cases" fees category. Accommodation inclusive? Diet might be tough to follow out of a hotel room. Maybe for rent by owner with a kitchen?

Have you found anywhere else? Did helminthic therapy help at all for you?

There's a dr. in Calgary treating c.difficile with heavy amounts of triple coated poo PILLS. I doubt they will A-ok that for AS any time soon.

I'm saving the FMT for my last line of defense. Have you seen the DIY FMT on youtube?

I just got my pro-3 and potato starch today. Took one tsp PS, 1 pro-3, and 1 prescript assist. I didn't have time to get the primal defense one as I have to drive to The States to grab all of this stuff. Tons o' veggies and fermented foods on top of all of that and I'm hoping for the best.

I PM'd my email to you.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/25/14 06:17 PM
I have the Paleo Approach and have skimmed through it. Have yet to read it cover to cover. I appreciate how thorough she is in sticking to science and citing her sources.

I was on a NSD with a very high volume of vegetables for a couple months, I didn't personally notice a difference from consuming such a massive amount of the micronutrients Ballantyne and Wahls praise. I've balanced my omega 3:6 ratio to a point where a Quest blood test showed it below 1 (it was .9 I think), I've since added quite a bit of pork and lessened my fish intake, so it's certainly not that good at the moment. I try to mind my circadian rhythms as much as possible, but I'm definitely not perfect in that regard.

I've looked a little bit into Taymount, accommodations aren't included, but they do list some suggestions in their PDF plamflet If you make it over there I'm sure you could find a way to make the diet work, where there's a will there's a way (especially if you willed your way into FMT)!

The only other clinic I know of that treats for non C-diff is I *believe* they treat non gut AI issues. There's an updated list here

Nothing to note so far regarding helminthic therapy. But I'm only 4 weeks into treatment (and that's assuming all 35 hookworms even made it to their final destination) and most tell you to basically forget that you even have the worms until 3 months in.

Poo pills are very cool idea, and certainly a preferable to anything going in through the other end! Another thing I'm excited to follow the progress is are the biotech companies looking at microbiome based therapeutics (quite a list here These guys had great (initial at least) success with C-diff and inflammatory diseases are listed in their product pipeline

I've watched the DIY stuff and it's definitely tempting to explore more, but I haven't had the balls to have a donor conversation with anyone haha.

Very cool that you got your stuff, I'll be interested to hear how you react short term to the PS + probiotic combo.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/26/14 02:09 PM
Got my stuff. I'm on prscript assist(2/day), AOR Pro-3(3/day) and about half tbs of p starch. Primal defense is on the way.
I know what you mean about the gas. I'm calling them "fear farts." Not sure if I'm farting or soiling my tighty whities :0 It's been almost two full days since my first scoops of P starch. I'm surprised that there's no uptick in pain levels. This is by far the most starch of any form I've eaten in almost 3 months. No BM's yet but I took my first of what will be 3 doses of 1/2 tsp magnesium citrate today to hopefully help.

Do you have names for your 35 hookworm pets? wink Did you ever think when you were growing up that you'd be eating hookworms and talking about asking friends for their feces when you're older? I would use my Wife's poo. She has an iron belly. She could eat a live wolverine and walk away unscathed.

Encouraging articles! Test what's missing and pop that in a pill! I'm not saying it's that easy but it would be similar to over the counter probiotics, wouldn't it? Can't be patented. Open market. Competition. Lower prices. Dream weaving here. It would even be great if countries like Thailand or Mexico opened up FMT clinics for whoever wanted them. If I had an extra 15k lying around, I would seriously consider taymont, though.

How often are you going to increase your p Starch dose? At how many Tbs are you looking to max out at?

Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/26/14 04:39 PM
Haha yup, definitely gambling on some farts! And, nope, life definitely threw me a curveball with this one.

I'm particularly interested in Seres (no real reason, just been following them since they went public, but from the looks of it their team is pretty impressive). While they won't say exactly what diseases their targeting the term inflammatory diseases is encouraging. They have some proprietary tech I think that puts it beyond probiotics, but the details they have disclosed are way above my science pay grade. They do have over 25 patents though

I jumped right in with 2 tablespoons on day 1 and I'm up to 4+ tablespoons now. I'll probably max at 4-6 per day. I finally got a decent dose of veggies last night, and had a little upset stomach after. If I had to attribute to mixing with PS + probiotics I'd guess there could have been a connection, but that's purely anecdotal.

Oh, and my folate should be coming in today. Will be starting 400-800mcg today based on this study
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/27/14 01:19 AM
The jimmunol link works but I can't open this one, which I think is the main article?

Now this guy is certainly no Dr and has questionable motives and products but he notes that when you take folate, one must take b12 and vice versa. I haven't found any other reputable sources discussing that but it's something worth looking into. I've had a bottle of methyl folate(400 mgcaps) and methyl cobalamin(5mg tabs) sitting around for a few months unused. I looked at perfect health diet and his rec. dose amounts which are miniscule in comparison to Dave Asprey's. I decided to not use them until I found more concrete evidence.

What's the dose amount on that article for folate? Which brand did you buy? I have this one and am hoping it's the correct version.
My b12 is this one

I'm going to take my PS dose up to 1 full tbs today. I'll add 1Tbs each week until I hit my sweet spot.

You know you are reading info from the right person when he's willing to admit his dismissiveness and change his opinions.

I hope we're on the right track.
Please keep the info coming and I'll try to send through any good stuff that I find as well.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/27/14 05:46 AM
I hear ya regarding supplements. Everybody has different recommendations, so it's almost impossible to feel good about actually taking a supplement, and then on top of it finding the best form of it.

Before embarking on the PS starch, I had stopped all supplements (curcumin with piperine was the last to go as I had seen a couple theories that it could harm my helminths).

Thanks for the link to Dave's supplement guide! I eat quite a bit of meat (lamb in particular), so I'm not deficient in the traditional sense for B12. But the daily intake recommendations for B12 vs folate are quite a bit different


I personally got this guy mostly based off of Chris Kresser's recommendation If you were interested in taking the 2 in conjunction, they do have this I'm also following his general dosing advice. I figure I'll take either 1 or 2 400 mcg capsules a day.

Because it was a mouse study, I certainly wouldn't put a lot of weight in it, and don't know if there's any dosing information that you could take from it.

There was another mouse study that had similar results

I don't have any expectations for the B9, but it seemed like a relatively harmless supplement to throw into the mix.

Also Chris Kresser just did a podcast with the guy who started Taymount clinic, not a lot of new info, and not that much specific to AI disease, but worth a listen. I'd like to think he hints that he's toying with the idea of making pills.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/27/14 01:52 PM
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.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/27/14 09:00 PM
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.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/27/14 11:29 PM
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.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/28/14 01:00 AM
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.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/28/14 12:28 PM
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.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/30/14 12:39 AM
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 ( 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.
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 03/30/14 01:43 AM
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.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/30/14 01:00 PM
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?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/30/14 05:52 PM
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.

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 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."
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/31/14 04:30 AM
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?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/31/14 05:45 AM
Yeah while Briggs makes quite a few more recommendations, the base of the advice seems quite similar to Art Ayer's. I've seen glutathione thrown around in a number of recommendations as well. [correction to my earlier post, I said Briggs was a PHD in microbiology, but in reality it's physics] Chris Kresser's got some good thoughts on it.

I've considered picking up some colostrum as well, but it seems hard to find to best source of this. I've seen varying recommendations about sourcing and various forms. And I've also read the best source is actually human colostrum which is BANANAS expensive from the tiny bit of Googling I did.

I used to eat quite a bit of veggies, but my diet slowly slid away from them as I didn't notice any benefit from eating them. If I had to hypothesize, I'd guess it was the mix of the probitiocs + RS + veggies causing the discomfort, but there's a lot of things at play. Could even be the helminths, but it would be rather late in their life cycle to start causing gastrointestinal symptoms (though not an uncommon side effect at all).

Nah, haven't tried introducing others foods while on the AIP. They weren't foods I was particularly interested in, and I (perhaps wrongly) assumed the cons of reintroducing them outweighed the cons.

Yeah, I'd say that describes me fairly well AIP + strict avoidance of starch - the veggies more recently (but like I said - just reintroduced so anyone following along doesn't get confused). As well as daily intermittent fasting (usually 1 meal a day, i.e. the warrior diet). When I ate more veggies, I ate avocados daily without issue.

For better or worse, I'm going to pretend for now that the stomach pain is a side effect of increased fermentation that my stomach isn't used to. With the potato starch + probiotics + fermented veggies + regular veggies + dark chocolate I feel like I'm bombing my system with new bacteria and bacteria food. Imma stay the course for the time being.

This is somewhat of an aside, but I'm also justifying the chocolate because of this too I don't eat any meals until dinner, so I figure having some dark chocolate with my first serving of PS gives me some of the fat it may need.

Yeah, I'm sure genetics has it's role, but if I had to guess I'm inclined to believe the biggest factor for me was the 5+ years I was on antibiotics I was on for acne (smh at my dermatologist. Quack city, population him). I can't remember exactly when I stopped taking them, but I *think* it may have been right before my first symptom appeared.

I hear ya' about telling me it's incurable! Not looking forward to the day where I feel I've exhausted my options, but I think that's a ways away!

I found this video about T regulatory cells pretty good:

It's geared more towards their function in transplantation as opposed to autoimmunity, but there's a good bit of talk about AI as well. He talks about mouse studies where T1 diabetes was induced by creating an immune system deficient in Tregs, and also studies putting it into remission by supplementing Tregs into the immune system. (I think that was in there, it could have just been preventing the onset, but I believe it induced remission)

Lotta great links in this thread. Loved these two videos (h/t to lool for both these), even if they don't have a ton of actionable info:

Haven't finished the second, but the first raises more questions than it answers, but great to see this research being done and and the findings being talked about. The link between gum disease and RA is fascinating.

I studied business in college, but like so many I haven't put my degree to good use (is there any real good use for a business degree?), and now I design video games haha.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 03/31/14 02:12 PM
I listened to that Kresser podcast. So I'm getting that it's best to get glutathione from diet ie. undenatured, grass-fed, organic whey protein is good followed by other foods followed by an expensive S-Acetyl Glutathione.
I found these on GSH( I really don't like curezone but it has some interesting "facts" regarding antibacterial and antiviral activity)

I wonder if the cheaper milk derived colustrum is still effective?

You're not alone in your antibiotic onslaught. I used to pop antibiotics like candy. I used to avoid the hospitals and ask for a diagnosis(an fix) at the local privately owned pharmacies all over South East Asia. I always think back to a time in Cambodia when I was sick and getting antib's while a western customer said to me, "You know those are serious drugs, right?" I probably said something cheeky or rolled my eyes. Even worse is when I got checked for tb pre enbrel. I tested a very questionable positive. They said that I should just take the 6 months worth of ab's just in case. Not even a mention of pro/prebiotics or gut health.

I love info like the probiotics with fats article. I take/eat both already. Why not do it at the right times with the right foods? It's nice to have proof behind a more efficient way to do what we already do smile

I went to go see Dr. Blainey from one of those links. I weighed out all the people for Marshall protocol vs. against. More people against and I couldn't afford to see him as often as I needed to.

I'm gonna hop into those treg vids later today.

You seem to grasp all of this info really well. That's why I asked what you studied. I was playing poker for my income but have recently stopped. I stopped since my last case of iritis as I'm s*#@ scared it'll come back. I was playing for quite biggish stakes before then and it might have contributed to my onset(along with holiday pig out fests) Not making $ is a bit stressful as well wink What games are you working on at the moment? Flash game type or PS/nintendo type?

Update re Pstarch. Up to 2 tbs and had two BM's yesterday. Not sure if it would've happened regarless but hey, I'll take it. I slipped a potato starch micky into my Wife's smoothie this morn. I though it would be fair to equip her with retaliatory ammo. You're up to 4-6. Any added pain from it do you think?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 03/31/14 07:20 PM
Yeah when I first came across the Marshall protocol, I was intrigued at first, but at the same time it seemed way too dangerous of a protocol to try for something that's unproven and goes against a lot of current recommendations. Did Blainey seem to have his head on straight? Sometime it's easier to tell in person than online?

WOW, just watching this video from Larry Smarr is AWESOME. At around the 44 minute mark he goes into the detail of his microbiome vs a healthy one (he has IBD). The difference is huge, would love to see if this meshes with what's coming out of uBiome and American Gut project. Cause everything I've seen out of them is relatively small differences. His gut has severe dysbiosis.

I feel like it somewhat contradicts the info that Steven Abramson presented in the Microbiome and Autoimmunity video. While Abramson suggested dysbosis and altered gut microbiome present in AI, not anywhere near the dysbosis Smarr shows evidence of in his video. I can't help but wonder if there's some difference in collection and analysis techniques that would lead to varied results.

Playing poker for the living sounds like the most stressful thing in the world! Wouldn't be surprised if that didn't help, but as with everything who can say for sure. I'm working on mobile games at the moment

If it sounds like I know what I'm talking about, rest assured I don't. It's only cause I'm decent bsing my way through things. It got me through college (while I left with one semester left to come out to California, but it got me through 3 and a half years), but I don't know how helpful it'll be in understanding this disease though.

I'd say pains been pretty consistent from before adding potato starch to current levels.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/01/14 04:50 AM
Dropped down to 3tbsp of PS today and skipped the veggies with dinner. Tried to give my stomach a little break.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/01/14 06:41 AM
I still havent had time to check out those vids yet. You've got me excitd about them though.
Maybe when you do eat veg, you might find romaine, celery and cucumbers pretty mild. Not much in there but water but at least there's some nutrition in them as opposed to iceberg. Makes sense to drop it all down anyways.
I got my primal flora and popped two today. One of the best bristol 4's ever! wink Fingers crossed and hoping they are here to stay.
Three and a half years is still three and a half years more education than I have! I couldn't figure out how to find the games on your site but I did find out that Art Zhou looks like an absolute genius mad scientist!

I grew up always playing competitive sports and really enjoyed the stressful aspect of poker. I guess just bcuz I enjoy something, it doesn't mean it's healthy for me. I think meth addicts really enjoy what they do as well.

I'm gonna stay at 2 tbs for a week or so based on what we've both been feeling. A lot of variables involved for both of us but I'm really glad that I've been willing and able to try this all for myself and that I have you to share and compare with.

Picked up the wahls protocol today!
Dr. Blainey was a nice, patient doctor. I found myself just desperately trying to understand what he was talking about for 50 mins of our hour appointment. He got me on olmatec but I got a fungal rash within a couple days. Maybe due to herxeimer but it costs over $250 to speak with him for 30 mins about it. I realized that I might need to speak with him really often. As you can see, I ask a lot of questions and am secretly referred to on kickas as "the topic crusher." I'm the last commenter(questioner) on about 127 different topics. I was happy to find more than a few reliable sources opposing that protocol and saved myself probably about 8000 in appointment fees. But who knows, maybe I'd be on my way to ridding myself of this condition had I stuck with it?

I'm hoping your cutting back a bit on pstarch and veg helps out. Lemme know how it goes
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/03/14 06:51 PM
I'm giving this resistant starch a go as well as of last night after 2 years of no starch and 8 months of low sugar and no dairy. I have been interested in it, but have been too scared to try it as I came to the conclusion that Klebsiella would feed on it. However I've just had to go back on the Dyclofenac after I managed to go 6 weeks without them for the first time in 14 years but the insidious "freezing" up of the lower spine crept in making it a hard job to put my socks on in the morning let alone do some Deadlifts! So I might as well give it a go. A little pain is ok to deal with here and there I guess. I also found little info specific to Klebsiella, resistant starch and HLA-B27 so the only option is to try and see. I took a tablespoon of Potato Starch last night and some sauerkraut after dinner. So far gas, no aches....nothing. I'm not sure if this is a good thing or a bad thing yet but I'm happy that I don't have any additional pain. I guess the coming weeks will be interesting.
Posted By: snowshoe Re: CURING AUTOIMMUNE DISEASE - 04/04/14 12:17 AM
Hi, I skimmed through this post looking for his published research but might have missed it? Seems this is about diet & alternatives? Does he conduct/publish research (especially as this is titled a Cure)? Just wondering as I double checked thinking I clicked on the wrong forum smile
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/04/14 01:45 AM
Good to have another n=1 in this experiment dlee. Keep us updated on your progress!

Originally Posted By: snowshoe
Hi, I skimmed through this post looking for his published research but might have missed it? Seems this is about diet & alternatives? Does he conduct/publish research (especially as this is titled a Cure)? Just wondering as I double checked thinking I clicked on the wrong forum smile

You're definitely right snowshoe, absolutely a theory as opposed to research. His bio says he's held research positions, but this is certainly not formal research at all.

As for myself, still getting stomach pain a decent amount of the time about an hour after high dose probiotics (4-6 pills + sauerkraut) and 2tbsp PS.

This was a good video, but a lot of it went over my head
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/04/14 06:34 AM
What is your guys' take on healing SIBO? I've noticed this a couple times throughout Dr. B. G.'s write ups "3. Soil-based probiotic 1-2 daily if not severely immune compromised (Bacillus licheniformis, Clostridium butyricum, etc)"

I assume all of us on kickas are severely immune compromised.

Good luck dlee and I hope you don't feel any negative effects. If you have any good exercise or stretch vids/info, I'm always looking for more.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/04/14 06:11 PM
I haven't done much looking into SIBO, so I'm not of much use there.

It's my understanding that we're actually the opposite of immune compromised where our immune systems are in overdrive. That being said, you're on a TNF inhibitor which could put you in a more immune compromised state.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/04/14 11:49 PM
That makes sense to me about our immune systems being in overdrive. It's tough in my case bcuz a conversation with my rheumy seems pointless regarding enbrel and probiotics/pstarch.

I just noticed so many similarities between Dr. B. G's recs. for curing SIBO and general gut repair from free the animal etc. and wondered if we are more prone to having SIBO.

For the last couple days, I was feeling like a bout of iritis was just about to kick in. I couldn't figure out what it could be until I noticed that potato starch heated past 130 degrees completely alters the rs. I made a meatloaf using pstarch. Tasted great but I'm thinking that might have been the culprit. Koopa, you didn't seem to have any issues when you made the cookies though, right?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/05/14 12:25 AM
Cookies? What cookies? I just drink mine in water.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/05/14 06:40 AM
Oh. I wrongfully assumed(and was pretty envious about it) that you used potato starch to make cookies with that probiotic chocolate.
I'm switching up my rs routine a bit based on heisenbug's fat with probiotics article as well as Dr. BG's recc. of using psyllium and ORAC powder. #4. Version B

Is your stomach any better yet?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/05/14 10:33 AM
Today is the end of my 3rd day on Potato starch. 1st day = 1 tablespoon, 2nd day = 2 tablespoons and today was 3 tablespoons (distributed throughout the day with meals usually). Inflammation seems to have reduced. Best its been in 4 weeks, however tricky to know for sure because I'm still taking Dyclofenac after 6 weeks off the damn things (inflammation slowly increased until I couldn't exercise anymore so back on them to get it under control). If by the end of tomorrow I still feel good, I'm going back off the dyclofenac. I'm actually really surprised I haven't keeled over since I was sure any starch and especially resistant starch would feed Klebsiella. If it is feeding Klebsiella (and I believe it would), it doesn't appear to be having a major impact as yet. I have previously had problems with the starch in cooked zucchini so consider myself very starch sensitive. I was able to deadlift yesterday and felt stronger than I have in many weeks and today whilst not exercising, I feel great to the point I want to exercise. I don't have an irritable gut, add maybe a slight increase in gas. Promising so far for me and I'm quite excited about this because I've almost come to the conclusion that no starch isn't the full story. I'm rapidly coming to the conclusion (after reading Art's postings) that resistant starch might be the missing bit to the low carb, high fat, moderate protein diet I eat. I have pretty much eaten a diet consistent with Art's "anti inflammatory" diet for the last 2 years (except for the resistant starch) which has mostly worked, but I haven't been able to kick the dyclofenac out of my diet for any decent length of time. Art's theories ring true for me. My AS got started with a violent episode of food poisoning in 2000. Gut flora and bio film would certainly have been cleared out and possibly never repopulated properly. I also ate a very high starch high grain diet back then.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/05/14 02:15 PM
Your story is very similar to mine. My AS started right after I contracted chlamydia trachomatis. I also had multiple stints of severe food poisoning while travelling around south east asia. My diet was probably about 90% grains. Minimal veggies and rarely fruit. Typical lunch for me was two grilled cheese sandwiches(white bread of course), doused and fried in margarine, ramen noodles and a hearty serving of sour cream and onion pringles. Whenever I was traveling, I would always fall back on my western "comfort foods" that consisted of pizza hut, mcd's, burger king and so on.
Really happy to hear that you're doing well. Nice to get back in the gym? I shared your apprehension before my first dose of pstarch. Once bitten, twice shy. I'm hoping it works out for us.
Anybody tried soaked grains and lived to tell about it? I'm nowhere near that point yet but I'd like to eventually add a variety of resistant starches and see how I react.

Mark Sisson had another RS article the other day;
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/05/14 07:06 PM
Haha! Wish I was having cookies, the GI Revive and and 100% chocolate is about the sweetest thing I've had in a year.

Regarding the stomach, still be up and down. I should probably back off the 5tbsp of PS I've been doing a day. I've also been doing 2 bigger servings instead of broken up more (there was some comment somewhere that led me to do this, don't think it's of any significant importance though). I might try more smaller servings.

I thought about trying BG's little mix recommendation. But decided instead to just try my veggie smoothie. The number of ingredients on the ORAC powder scared me off (and it has peppermint flavor, which *may* affect hookworms). Did you look into any others besides Amazing Grass? What'd you get for psyllium?

I'm with you dlee, I was on a VERY restrictive diet, but adding in PS has at least mentally broken down a barrier where I feel like I can try other healthy foods (dark chocolate, berries, egg yolks, more veggies - haven't tried the last 3, but I'm considering it haha).
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 04/05/14 11:58 PM
Hello Dlee from another Aucklander. It sounds like so far so good with the potato starch. Where did you get it and what brand is it? Any other dietary modifications e.g. no dairy, nuts, etc?
And I too became symptomatic after a severe bout of food poisoning - Indonesia 2012.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/06/14 12:49 AM
I worry about the ingredients in that ORAC too. I didn't look into other brands but probably should have. For psyllium, I just ordered this one
as I'm not sure wether I should use the whole husk or blend it into powder?(I find allstarhealth to be the cheapest place for most supplements and even cheaper with its flat rate shipping) I don't know about psyllium but pomegranate seeds only test positive for starch when I crack open the seed. And again I'm not sure how well these seeds or husks are broken down by our guts. Is that why you are hesitant to try berries? Or is it for another reason? As per PHD's reccs., I also ordered some dextrose powder hoping to build up my daily carb intake, my tolerance to them and to help with post exercise carb loading.
The more the merrier, Copen. If you end up trying any of this, please keep us posted on what you're doing and how you're feeling.
It's tough for us as we seem to be the only auto immune issue with restrictions on starch! Tons of great sources indicate that a large portion of our diets should come from starchy vegetables and foods. It seems that starch is really beneficial to the human gut microbiome but as for those of us with AS...?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/06/14 02:13 AM
Hi Copen,
This place ( to normally have the normal "Bobs Red Mill" that seems popular. But their website is showing "out of stock" so I got another one from "Farrow Fresh". They have a Japanese one (hope its not made from radioactive potatoes). There is not much English on it. Or "Maedakatakuriko". Says 100% Potato Starch.

I'm forever tinkering with my diet to try and eliminate the last little bit of inflammation. I don't eat many nuts. Maybe in total it would be half a handful per day if that. I've eliminated dairy after I found full fat natural Yoghurt to be the cause of annoying but minor headaches. I eat lots of Coconut Cream instead. Removing dairy helped reduce inflammation for sure but I still eat dairy cream in cooked dishes once per week. e.g. Buttered chicken or mushroom cream sauce on my steaks. It doesn't seem to affect me too much if at all. And when I do eat it I eat a lot. I lap up cream sauce's basically.... its like gold. I might reintroduce butter back into my coffee again. I used to eat a LOT of butter. I don't eat much fruit. Probably 1 piece per day. I eat blueberries every night though. I also fast every day now. For the last 2 months I've been following protocols for fasting and exercise. I eat between 1pm and 10pm only. Breakfast is black coffee only and lots of water. I was doing full 24 hours fasts once per week, but have cut back on those whilst I now do the shorter ones daily. My daily calories is around 1500 - 2000. I tried eating over 3000 per day but it was uncomfortable eating that much in a 8 hour window and seems to have provided no additional benefit.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/06/14 02:19 AM
Oh yeah, I also eat 7-10 capsules of fish oil per day depending on brand. I'm targeting 2 mg of EPA and 1.5 of DHA for anti inflammatory effects so I just read the label on each brand and see how many I need to eat. Eat all at once on an empty stomach and wait 20 mins before eating anything else. Fibre interferes with uptake apparently of fish oil. I read that Omega 3 in high quantities can displace inflammatory Omega 6 receptors in cells. Since I've taken these I think its helped a fair amount as well but hard to know for sure.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/06/14 06:04 AM
Originally Posted By: CoatTails
I worry about the ingredients in that ORAC too. I didn't look into other brands but probably should have. For psyllium, I just ordered this one
as I'm not sure wether I should use the whole husk or blend it into powder? [cont.]

I'm not sure either, I'll look around tomorrow and let you know if I find anything!

I guess I stopped eating berries as it was just part of going down the "elimination diet rabbit hole" (I'm sure we've all gone through this process) that goes something like - take away food item (first item was starch as KickAS was the beginning of my diet journey, other examples: seeds, caffeine, fruit) don't see the results you want, read about some other item and why it's bad, remove it from diet.

I read a lot about people taking out sugar/fruit from their diet, so I just added it in. I don't recall ever seeing people having any amazing results from removing berries, and it's a food I love, seems like it might have health benefits, so I might add it back in.

Originally Posted By: dlee
Hi Copen,
This place ( to normally have the normal "Bobs Red Mill" that seems popular. But their website is showing "out of stock" so I got another one from "Farrow Fresh". They have a Japanese one (hope its not made from radioactive potatoes). There is not much English on it. Or "Maedakatakuriko". Says 100% Potato Starch.

Just a heads up - the early adopters of PS did a decent amount of investigation into Bob's Red Mill PS to make sure it really was RS - shredded, saturated, and collected from cold water as opposed to boiled or heated. If this brand used heat in the creation process it would remove its resistant qualities. Might be totally fine, but something to keep in mind.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/07/14 03:40 AM
Hmm, I think I need to get some Bob's Red Mill in that case to be sure. Even if the stuff I'm eating is not full resistant starch, then I guess its still encouraging that I seem to be tolerating carbs from starch sources.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/08/14 01:16 PM
Hopefully adding berries doesn't cause any ill effects. I know what your saying about the never ending food intolerance hole. There are sooooo many people that have sooooo many food intolerances and it always makes me wonder wether the elimination of this or that will make a difference. That was part of the reason that got me stuck on Dr. Ayers' work. It would make sense that everyone's gut microbiome is different and that they can handle/not handle according to the different bacterial strains inhabiting the gut. How many of us with AS have completely different food intolerances.(with the exception of specific kinds of starch)
I really like that leangains site, Dlee. Makes a lot of sense to just stick with the basic exercises and a healthy diet. Adequate rest in between. If Phil Galfond and Richard Nikoley use and support his strategies, they'll be good enough for me. Funny that you mention dairy as I just only realized within the past couple months that I react horribly to full fat greek yogurt. I've been scared off all other dairy and similarly do coconut milk and cocnut cream instead.
I've tried fasts from bulletproofexecs recs. but they didn't seem to resonate well with me or make any difference. I only tried the 24 hr fast once per week for a few weeks. Do the fasts you follow help alleviate pain or are they more for body composition?

I'm confident that pstarch is not increasing my pain levels at this point. I'm going keep myself on 2 tbs until at least one week after I've added my pysllium, inulin fos and amazing grass. If I don't react poorly from those new items, then I'll kick it up to 3-4 tbs. I'll be picking up my orders in the next few days.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/08/14 07:01 PM
I don't even know if I'm intolerant to them, I just eliminated them to see if it would help haha. I've been doing intermittent fasting for a couple months now basically every day - just eat one big meal at dinner. Didn't know much of a difference in anything except for a marked decrease in hunger/need to eat throughout the day as time went on.

I ordered this for ORACs

Dropping down to 3 tbsp of PS/day seems to make my stomach happier.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/09/14 02:15 PM
I know you've been doing a ton of work to better your health and gut, Koopa. I think and hope that your gut will be better and more accepting of foods that may have once been offensive. I know that both of the brands of ORACs we've purchased have quite a few ingreds I would've been really scared of a few weeks ago but n=1, right?
I'm pretty thin and can't afford to lose any weight. I've noticed on multiple exercise sites that I can avoid muscle/weight loss in fasting periods by supplementing with BCAA's. I was doing that for a while, worked really well, body-composition-wise, but found out that they were keeping me in constant flares. I try to follow the paleo approach rec of 3 big meals plus one snack in between. Again, I'm not really sure if it specifically hurts or helps but it looked at the time like the easiest approach of the ones I'd looked over.

I've added about 300-500mg, once daily of magnesium citrate(i dion't think it's the ideal form but it's what I have) for the last few days. I say that bcuz I'm not sure if it's the Mag that's helping or the pstarch routine kicking in but I feel great! I'm getting deep, rested sleeps. 7-10 hrs straight. I was only sleeping max 6 hrs before waking due to pain for the past couple months. I don't think my enbrel is working anymore as it seems any time I slip on my health regimen, I flare. Maybe it would hurt more? I'm scared to drop it. My dreams have been more vivid than they have been for years.(meant to be a sign of RS working and I think means that I'm reaching a deeper sleep state?) I have gone from a BM once every three days, to one or two bristol 4's per day. One negative is that my gassiness hasn't subsided at all. The last two or three days have been virtually pain free as well. I've been attempting to hone in on suitable levels and durations of various exercises and stretching. I'm trying to routinely manage my levels of stress. Tons of walking, slowly riding my bike for groceries etc.

I hope I don't sound like I'm boasting or bragging. I'm just trying to let you know how I'm feeling, what's helped and see if any of these strategies effected anybody else for better or worse?

Glad to hear that your stomach is better! That's awesome that it's the pstarch and not the veggies! From all the articles we've been reading, 3 tbs of pstarch is roughly the desired eventual dosage anyways.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/09/14 09:52 PM
I do the fasts mainly for health in general. I don't really find they have any beneficial effect on my levels of inflammation although I'm sure they have some impact.

I'm interested in the effects of "Autophagy" on the brain and the repair mechanisms that get fired up in the body upon not eating for any length of time. 24 hours is the most I do every once in a while and at about 17 - 18 hours into that, I notice sensations going on in my head. I can get a heavy dose of relaxation for an hour or so and I feel like I'm on a natural high. There's some endorphin's or something released for sure because it feels heavenly. I sometimes start laughing actually for no particular reason. Its a buzz. So if it makes me feel good....then it is good.

And now I've started skipping breakfast in the morning to prolong the normal repair mechanisms in the body for longer. No eating = body in cleaning out mode, eating = body in rebuilding mode. I read it takes about 6 hours of no eating before body starts to switch over to repair mechanism.

Not eating breakfast is also handy. I get up, shower, get a coffee in me and head out the door. Hit my work for the morning (another coffee at 10am) when I'm most mentally alert up until 1pm, eat lunch and then take it easy for the afternoon period. It works for me. Its a great time saver not having to make bacon and eggs each morning.

I ate cold Potatoes last night that I let sit for 24 hours in the fridge. No flare. I'm also regular now instead of once every 3 or 4 days as well so this Potato Starch is doing something. I've got hold of some natural SauerKraut as well. And I seemed to have gained a kilo this week which is consistent with bacteria growth I read on freetheanimal.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/09/14 09:53 PM
Also my sleep is much improved! Low carb diets have given me sleep problems and I believe its due to elevated cortisol from low carb.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/09/14 10:36 PM
Got my Reds and Greens powder in the mail today, along with some psyllium husk and a re-up of my probiotics. I'm def a little nervy of all the ingredients, but none of them jump out at me as red flags, so worth a try!

I do the 1 meal a day too for autophagy, I've been having some chocolate in the morning with my PS and probiotics and sometimes some sauerkraut, so who knows where my body falls on the fasted vs nourished state with my current patterns. I do like the freedom of not feeling like I need to eat that frequently.

I've got an old bottle of magnesium citrate lying around. I feel like I sleep alright already, so I'll probably leave it on the shelf for now, but it is one of those supplements everyone seems to recommend!

Good to hear you guys are both doing well on this, hope it means we're onto something.

If anyone's gone through the other videos this one's got some decent stuff The second guy focuses specifically on crohns. A few mentions of autoimmune arthritis throughout it.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/12/14 10:43 AM
I believe I was in a similar situation cortisol-wise. When I was at the lowest of my low carb diet, I seemed to get stressed out over everything, really moody and not a fun guy to be around. Still no flare from the cooked and cooled potato? What kind of potato did you use?

Got my stuff too. I've been a bad test subject though and introduced new foods just before adding the ORAC, inulinFOS and pysllium. I've been flaring pretty good in the morning but it dissipates quickly. I've taken out the sweet potato(dumb move to eat it to begin with), shaved ham(with questionable ingreds.) and coconut butter(so delicious but taking out just cuz it's new) If the flare sticks, I'll know it's the ORAC or inulin.

MollyC put up a really interesting article about Borax and Boron;

I usually take about 6mg of Ionic Boron every 1-2 weeks but am going to add that to my daily supplements and see how i feel. This is the kind I have. Anything I should know about the one I'm taking or does it look pretty good?

Dr. BG and a commenter discuss its anti-fungal and other properties but I can't find the article.

It got my gears turning about anti-fungals/parasitics/microbials again. Does anyone know if it can do damage taking a few cycles of this(or similar)
Even if we don't know definitively what fungi/parasites may be an issue? I've noticed Dragon Slayer mention the usage of most of the herbs in that mixture, just done separately.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/13/14 08:09 PM
Great info on Borax and Boron. I might give that a go as well if I can find some in NZ.

I have eaten more Potato since my first lot with no obvious effects. I tend to eat on the evenings after I do some weights. I fried up some potatoes (that had been previously cooled for 24 hours) in duck fat. Heaven. Slept like a baby. I'm eating some more tonight.

I am however still taking 100mg of dyclofenac each evening. I've decided to give this starch business a month to work its magic before I try to come off those again. But the level of inflammation does not appear to be increased. Even with Dyclofenac, I have previously been unable to control flares.

Yesterday I ate a green banana in a coconut milk smoothie. No issue except for some unbelievably toxic methane production about 7 hours later. Absolute filth and uncomfortable.

I think I made a mistake however. I also had my favorite Sunday afternoon treat yesterday which is a fresh natural green coconut, take the top off it, drink some of that sweet milk then pour in some white rum into the coconut. Afterwards, eat the soft flesh. Lovely, but you can't drink too many.

Coconut milk is a natural laxative and its also full of Potassium are bananas. Might have overdone the Potassium yesterday. I was uncomfortable all night, my sleep was poor, and major clear out. I will try another green banana tomorrow. Tonight it Potato night smile
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/13/14 08:12 PM
Not sure on the Potato type but I'm sure it would be Agria.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/14/14 12:48 PM
I'm looking forward to trying some potatoes for myself. I remember reading Richard Nikolay saying what kind of potatoes he uses but I can't find it again. Not sure if it makes a difference but does anyone else know? I'm gonna wait a bit on the potato though. I just started adding dextrose to my diet so that all of the carbs I consume aren't so fructose heavy. Paleo approach advises against dextrose... but also against fructose over 20 grams per day. Without eating starchy foods, this tends to be difficult. I took two tbs of dextrose today, hopefully it doesn't cost me in the morn.
That coconut rum treat sounds pretty delicious.

I've been full of "toxic methane" for weeks now. It was kinda funny for the first week or so but it's so bad that even I run away from the smell and leave chem trails everywhere I go. I really hope it goes away soon. I keep reading that the addition of primal defense or other sbo's should calm down the gas but not for me. I always take my PS smoothie with all the fixings in the morning. I'll try tomorrow to take it all at night before bed to see if that makes a difference.

Have any of you had a breath test for SIBO? I'm really wondering if I have it or if it is a common theme amongst those of us with AS?

I was fully unaware of the psyllium effect. Out on a long walk, 30 mins from home:( The only place around was an abortion clinic with protesters outside.(not kidding) I busted through the group of them and thanked my lucky stars the bathroom door was unlocked and unpatrolled.

You doing okay with your reds and greens CoopaTroopa? I stopped m ORAC powder for a few days to see if my morning flares go away.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/15/14 12:55 AM
My Bob's Red Mill arrived today. Was quicker to buy it on Amazon because absolutely nobody in NZ seems to have any due to the supplier running out. I notice when I put it into the water it behaves in the same manner as the other Japanese stuff I've been using to date. (which is it sinks)

Last night I had a decent servicing of 24 hour cooled potatoes re fried in duck fat. Again I slept well. When I went to bed I had a higher than normal level of inflammation (this had started to creep up prior to eating Potatoes). This morning I awoke, and inflammation is barely noticeable and remained that way throughout the day.

I slept really well too whereas the previous night I slept bad....thanks to green banana and coconut milk combo. I'm starting to wonder if a good nights sleep is more relevant to my inflammation levels rather than the starch content of Potato.
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 04/15/14 01:19 AM
So we are now n=4. I took my first dose of potato starch this morning (1Tbsp) along with soil-based probiotic and sauerkraut. Now a mildly apprehensive wait...
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/15/14 03:06 AM
Nice copen! Looking forward to hearing how it works out for you.

Short update on me mostly cause there's nothing to really update. (I'm very wary of false patterns emerging so I try and look at things over an extended period). Things seem to be holding fairly steady, no issues with the Reds and Greens powder over here.

Sticking with 3-3.5 tbsp of PS for now. I've been doing pretty high doses of the probiotics, so had to reorder those guys, the PS is cheap as hell, but the rest of these supplements add up. Haven't added in the psyllium as I figure I've got enough confounding variables to look at already. Though it would be nice to have some different sources of RS as who knows what microbes like what.
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 04/16/14 05:58 AM
Two days, two 1 Tbsp doses of potato starch and no increase in pain (from my baseline 1-2/10 so long as I remain starch free and low sugar). No tummy grumbles or increased gas...
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/16/14 01:18 PM
Four for four. Us AS'ers are tolerant of unmodified potato starch! Nice to have you on board Copen.
My gas and smell of gas significantly decreased after I spread out my doses. I did one in the morn with smoothie, one in the afternoon with lunch but when I added the 3rd Tbs with dinner I noticed an instant uptick in gas and definitely smell. Maybe I need to keep it at 2 Tbs for a bit?
I like your idea of feeding our microbes different sources of RS. Nikolay adds three different kinds. It's impossible for me to argue with his logic.

I read this in Dr.BG's write up in reference to what is absent in those with autism.
"Prevotella is also one of the top 3 genera observed to line our GI tract from mouth to anus. Its primary role in the large intestines is digestion of human-indigestible plant polysaccharides from cellulose, xylan, glycan, resistant starch, pectin, plants, shoots/roots/tubers, fruits, legumes/lentils, seeds/nuts, and whole grains."
I'm intolerant to most of the items listed above. Anybody know where we can find that specific strain? Aside from termite guts?

I phoned my Doctor's office to get a requisition form for this test;
No call back yesterday but I think it's about time I bite the bullet and find out what's actually going on in my gut. Once I get it done, I'll be more than happy to share my test results with whomever wants to have a peek. Might be a while though. Anybody else had one? The scdlifestyle clinicians claim to be able to detect SIBO through the same test. I assume if they can interpret the data somehow, then so can I/we. Finances are running thin and I'll be hoping it's worth it.
I have a cooked and cooled baked potato in the fridge. I'm gonna try it tonight or tmrw. Bought a lil bit of parboil rice and some black beans. Those will be next but only after I learn how to prepare them properly.
Have you tried another green banana Dlee?
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/16/14 01:24 PM
I think I've skipped past these instructions a dozen times somehow;
I clicked on the picture to the right of the list of RS foods. I wonder if I'll be more tolerant to some and less to others? Any experiences with these foods after soaking them?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/16/14 08:20 PM
Yes I did try another green banana. One last night (I was greedy, I had Potato with my dinner and green banana in my pre bedtime supper along with 4 tablespoons of PS throughout the day - 2 with lunch, 2 pre dinner) and one green banana the night before as well.

Since the fowl gas that went on all night Sunday, and total clearout Monday morning, I have not had a repeat of that. Gas is still there but I'd say 85% less of it.

I don't know....maybe I had some bacteria in my gut that attached to that first banana and got taken into the large intestine and cleared out, or maybe it was just a potent mix of natural coconut water and green banana. I think it was probably that because I've had the same experience drinking too much coconut water before. Possibly too much Potassium I'm guessing.

My inflammation does not seem to be affected by eating Potato's and Green Bananas. However I caution I could be masking it with my usual dose of Dyclofenac (100mg once per day). After a month of RS, I'm going to take Dyclofenac away again.

I am increasing weight. I dont' think it is fat though. 4 weeks ago I was 86kgs. I'm now 90 kgs. I suspect a combination of gut bacteria growth, and being able to do new exercises thanks to buying some equipment (chin-ups) in combination with post workout starch (potatoes) is providing muscle growth benefits.

As far as regular BM goes.....there is less fecal matter and it is far more regular (usually once per day) and its easy. First time in 2 years I have not to worry about shitting bricks or forcing one out after 3 - 5 days of nothing. Its just a huge relief mentally and literally and that alone is a huge benefit that RS has fixed.

I wonder if less fecal matter is just because its moving rather than being compacted up and therefore more regular, or whether more bacteria = more digestion of what you eat so less wastage. Maybe a bit of both.

Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/16/14 10:25 PM
Two articles of potential interest (and I think they sort of go hand in hand):

Will be interested to hear about the GI Effects results. I haven't had that done, but I did have a CDSA 2.0 done last August. You can see the results (and Dr's comments on it)

Good to hear about the improvement on the TMI front dlee, seems to be a common result of adding RS in.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/18/14 07:54 AM
I was and now am the same as you regarding BM's. I tried almost everything to get regular. Whenever i hit the three day mark, I'd usually be my deepest into a flare. Like you said, it could have been mental, could've been something else but that's one obstacle I'm incredibly happy to overcome! Really hoping it stays that way.
As you're on Dyclofenac, I've been on enbrel. It's hard for me to know exactly what's going on while on it. I said before though, I'm confident it's not working for me and have decided to stop. It's been about 2 and 1/2 weeks since my last injection. This is usually when I get a huge up tick in pain. I've been sleeping well, still have a bit of pain on waking but this is usually the point where self-destruction sets in and I gorge on tons of fructose heavy fruits, dried fruits, eating too close to bedtime and extended periods of time in awkward positions on the couch. Not this time. If I end up flaring heavily, I'll get on humira instead as it's the sensible thing to do with my iritis attacks anyways.
I had quarter of a cooked and cooled potato(baking potato) after my hockey game last night. Quarter again this morn with breakfast. So far so good. I've gotten up to about 3-4 tbs of pstarch per day. Spacing it out helped a lot with gassiness. I've also added about 3 tbs of dextrose powder with no ill effects.

Coopa, you beat Richard Nikolay to the punch on the hazda hunter gatherer article!
Thanks so much for posting your test results! It's really interesting to look at and gave me a little preview of what to expect. Called the Dr's office again. He didn't call back. I'm gonna walk in there on Tuesday for one final attempt at getting a requisition letter from him. When he says no, I'll have to pay a naturopathic dr to order it for me. I'm scared to ask and can't find a good enough google answer but does anyone know roughly how much it costs?

You still okay Copen?
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 04/18/14 10:32 PM
Hi, yes, doing ok. Went up to 2Tbsp potato starch this morning, now crossing my fingers. Pain remains around 1-2/10. Sleep has improved - and dreaming a WHOLE lot more. A bit hot at night (though maybe that's our extended southern hemisphere Indian summer). My weight has also gone up; have been a stable 50kg (yup I'm a girl) for many months, now suddenly 51-52kg. BMs have gone from every second day to daily. CoatTails, I'll be interested to hear how you go over the next little while as the enbrel leaves your system, and you, Dlee, when you stop the diclofenac. How are your pain levels Coopatroopa?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/19/14 04:49 PM
Mine are consistent with my pre-PS levels. I'm pretty bad at the 1-10 scale, as I'm super sensitive to false patterns and not being objective. I'm pretty confident saying they're the same (which joints are effected and how much fluctuates, but that's consistent with no PS/probiotics). I am on 15mg of Meloxicam every day too, so that certainly helps things.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/20/14 01:48 AM
I wanted to feel like a real person yesterday and give some soaked/sprouted, boiled then cooled black beans a go yesterday. I made a big vat of lamb stew and added 2-3tbs of beans to my lunch and dinner bowls. There was also 1/3 potato split into the two same stew meals as well.
I must've been 'vividly' dreaming that I was at an ACDC concert because I woke up rocked! Hard!. Felt like Chuck Norris karate chopped my spine. Not only is he impossibly powerful, he's also alien-laser precise! From a constant 0-2 on the pain scale to a 5-7 this morning. I'm just thankful that it was only his one-inch chop and not a full wind up. My pain scale doesn't go that high.
If you plan to add beans or similar, I caution those with AS to add in very slowly. 1 tsp or tbs per day? And don't confuse things by mixing in cooked and cooled potatoes. Chuck is ninja silently lurking.
What meds are you on, if u don't mind my asking, Copen?
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/20/14 02:10 AM
Damn, sorry to hear that CT, was that the only difference you can think of? Still on the same dosage of Enbrel? Has the flare died down?
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/20/14 12:57 PM
Ya, really frustrating. I should've had my enbrel injection about 1 week ago. It's not working, so I've axed it. Herxheimer? I think the potato didn't help the situation but I'm very confident it was the beans. I did everything else right. Full AIP, very low stress/de-stressing, one hour walk in nature, really healthy foods, mindful of fructose consumption(under 15g's), no awkward positions on the couch or elsewhere for long periods, massage from the Wifey. I did everything right knowing that my experiment depended on it.
I woke up after only 5 hrs sleep at about a 5-7 pain scale. I had a reall long, hot shower and put some zostrix hp(capsaisin as per dr ayers' rec) on and felt COMPLETELY drained of all energy. I passed out for 9 more hours and woke up at about a 3. It stayed at about a 2-3 for most of the day but I feel a lot better today.
Thank the PS gods that I had a BM immediately after waking yesterday. That used to crush me before when I would flare and not be able to go for 3 days without doing an enema. I really don't like doing enemas but used to find it necessary and helpful. Sorry for talking about my BM's all the time but I used to really struggle with that and from reading 1000's of posts here, I've noticed that a lot of others do too. If one is tolerant of PS, it really seems to be the answer.
Thanks for your concern Coopa, means a lot.
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 04/20/14 10:58 PM
Ouch, a painful but perhaps useful experiment CoatTails. My medication: I stopped methotrexate two and a half months ago when I started no-starch diet. Should be out of my system by now. I also reduced sulfasalazine from 2000mg to 1000mg at the same time. Planning to take another cut in a few weeks. Have avoided NSAIDs like the plague for about 8 mths.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/21/14 12:15 PM
I agree completely. Painful but useful. It'll be a while before I'm brave enough to try black beans again.
I was for fortunate that NSAIDs were completely useless for me. They were the first drugs offered and if they had've provided relief, I would have been all over them. I hopped right over to enbrel and got back my life back almost instantly. It's always interested me to see so many people with the same/similar condition on different meds.
I assume NSD is helping if you've reduced meds and also plan to cut further?
Do you follow any kind of dietary/lifestyle system aside from NSD?

Dlee and Coopa, do you guys supplement with anything or eat coconut oil etc. during your fasting periods?
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 04/21/14 09:48 PM
Yep, NSD has made a huge difference along with figuring out a few other intolerances (avocado - dammit, cauliflower, egg whites). I pretty much follow paleo autoimmune protocol; no dairy (ok, a little butter occasionally), nuts/seeds (except macadamias), alcohol (sigh), nightshades. Greatly reduced caffeine, very little sugar (max one piece fruit per day). Egg yolks only. Lots of meat (fortunately cows and sheep are all grass-fed in New Zealand), fish, green vegies. Lots of coconut. Only supplement (other than PS) is Vitamin C. I did a few fasts, including a three-day water fast, and although I became virtually pain-free (temporarily) they completely wiped me out and I struggled to regain the lost weight. Won't do any more and fortunately Sarah Ballentyne (the Paleo Approach) warns off them saying they tend to increase cortisol levels. I'm an ex-triathlete so still swim in a squad 3x week and cycle once or twice. And walk. Do sit-ups/press ups when I'm feeling frisky. Try to get to bed early and wake early-ish. That's pretty much my regime.
By the way, a little sore today. Not sure if it is the increase to 2tbsp PS a day or something else. I'll back off for a day or so then re-introduce.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/22/14 01:37 PM
We're living a very similar lifestyle Copen. Sounds like it's treating you well, seeing as you're able to be as active as you are. That's awesome! I've avoided the water fasts as I don't have much weight to lose either. I put myself into ketosis for a short while and was very low carb before and after for a while. My Wife said it was the worst stint of our marriage. Adding carbs helped and I noticed even more help after I started taking this stuff;
If I don't have time to visit the farm where I grab my grass-fed meats, I always fall back on frozen New Zealand grass-fed lamb from the supermarket. I use a bit of home made ghee from time to time but not often.
No rush on the PS. I'm taking a two or three day break. Gas subsided completely almost right away.
I found this article about the potential benefits of switching sources of RS and adding various probiotics etc. We're up to date on most of the other info but at the very bottom "Supper Booster recipe - Mix it up:" there is some really good info, in my opinion.

Dr. GBG and Tim Steele have agreed to go over my MDX 2200 when it's complete. I fully meant it when I told them they are super heroes.

Side note. I used to always(10 years) have cold and often clammy hands and feet. Since I began taking RS, it's completely better 90% of the time!
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/23/14 05:51 AM
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.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/24/14 10:14 PM
CoatTails, FYI - I got some Borax yesterday and mixed up a concentrate and have started on that too.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/24/14 11:33 PM
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.
Posted By: coopatroopa Re: CURING AUTOIMMUNE DISEASE - 04/25/14 03:49 AM
This paper is pretty great:

"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:

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?
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/25/14 01:32 PM
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.

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
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?
Posted By: crv Re: CURING AUTOIMMUNE DISEASE - 04/25/14 07:01 PM
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.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/26/14 10:25 AM
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.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 04/29/14 01:31 PM
You notice anything from the borax concentrate? How does it taste?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/29/14 08:44 PM
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.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 04/29/14 08:52 PM
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.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/01/14 12:26 PM
I'm going to start hopping on the green banana and cocnut milk smoothie routine.

Trying to determine triggers is so annoying isn't it? Just when we think we had a great day or two, we go and do the same things for another two days and end up with different levels of pain. Or like u said, something as simple as over eating can do us in. Or was it the workout;) ? Or was it the position of my seat in the car and the fact that I sat in it for too long on the way back from the gym bcuz I had to pick up my Wife? It's a constant learning curve but well worth paying attention to.
I agree, I'm completely sold on the RS in general. I just picked up a few fifferent prebiotics based on the gastalreality write up. Glucomannan – from konjac root, Mannan-oligosaccharides (MOS), Larch Arabinogalactan and pectins. They're unproven and under studied but I'm willing to give them a go. Nice and cheap too.

I forgot until you mentioned it but when I frst started taking the boron supplement, I woke up two nights in a row from a SERIOUS splitting headache. They only lasted about 5 mins each time but I remember questioning at the time wether it was that or something else?

Crappy deal about your Dad. Sorry to hear that but glad to hear he's getting a bit of help from your recs. My Mom has hodgekins lymphoma. She's beaten it once and has been an absolute soldier throughout. I REALLY hope your Dad is able to regain his health!

You seem to be the bravest of the bunch here, Dlee. If you run into a kind of cooked and cooled starchy/RS food that definitely doesn't bother you, I'd love to know what it is. I'm feelig in control of my symptoms at the moment and might start venturing out again into the big bad world of starchy foods. I'm thinking a big batch of cooked carrot and broccoli mash. Yep, I'm pretty rebellious, livin' life on the edge wink
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 05/01/14 08:50 PM
Hey Guys
It sounds like things are going well for you on the whole. Really pleased for you all. I'm down to pain levels of 0-1 out of 10 (feel a bit nervy writing that, don't want to jinx things) and potato starch at 2tbsp a day. Can't quite believe it. I've somehow missed the talk about borax - what's the deal with that?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/04/14 03:58 AM
Yeah I intend on giving soil based probiotics a go in near future as well. I've been eating some natural sauerkraut (proper stuff although not home made) so hopefully that has been adding some bacteria. I'm half tempted to go put my hands in the garden soil and give them a good lick afterwards smile

I've increased my Borax intake recently and should be getting about 24 mg a day now of Boron. I haven't taken an NSAID for 3 days, pain increased a little after first 24 hours, then it ended up subsiding so haven't felt the need for another yet. Pain levels good at around 1. Even with eating green banana last night. Mind you, yesterday I ended up on an unintended 20 hour fast as I had a call-out to problem at work and missed lunch (I don't eat breakfasts) so maybe that has something to do with it. Managed to maintain stable energy all through it though. Didn't really get overly hungry either.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/04/14 04:02 AM
Borax Conspiracy -

Basically Borax contains an essential mineral called Boron which we could be deficient in. Its cheap and easy to try so thought I'd give that a go as well.

So far I can't say I've noticed any negative effects except for possibly a bit of pain in the first 24 hours. But that could have been caused by other things as well.

Boron is a good fungicide that people also use to treat Candida.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/06/14 11:54 PM
Just a quick update. It must've been nearly a month since I started taking Potato starch. I've been off my NSAID's about 5 days or possibly more now. Inflammation rises a little overnight but generally disappears over the course of the morning. Its not unbearable at its worst.

I'm typically eating a 200 gram Potato with dinner every 2nd night, and now rice every other night and green banana maybe 3 times per week on any given day. And 4 tablespoons per day of raw unmodified potato starch.

I increased my dose of Borax 3 or 4 days ago to give me about 30 grams of Boron per day (taken throughout the day). Interesting....I slept badly every night of higher dose and gas from Potato starch dropped off. I'm suspecting this dose acts like an antibiotic (Borax/Boron is anti fungal/microbial) and kills of gut bacteria. I took none yesterday and back to a good nights sleep (and more gas). So appears to be a relationship at this early stage. I'm back on low dose now.

I'm going to try a real high dose of Borax soon as others have done. I'm guessing I will kill a lot of bacteria (good and bad) and wipe a lot out, but I'm going to reintroduce them with pro bio-tics both natural and pharmaceutical. The aim being to wipe out bad bacteria, and reintroduce good bacteria quickly which will hopefully establish a healthier gut biomass. All just theory and experimentation though.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/08/14 04:55 AM
Potatoes or rice almost every night of the week!? I'd say your efforts have been worth it!
I've been having a few issues with my lower back and eye just recently. I didn't want to be too bothered by it all so I avoided this site and researching to think about it as little as possible.
I added way too many things at once. Banana starch, few diffrent prebiotics and a bunch of different probiotics.

Hard to pinpoint what caused my issues but I gave all of the pstarch etc. a rest for roughly a week. I'm back on the pstarch(3tbs) and am only adding tiny amounts of bsatrch. This article is what got me back on the train

I thought the same about Borax and it's anti-fungal properties along-side pro/pre biotics and stopped for a bit. Even though I'm really starting to think that I should get in there with the anti-fungals and natural kleb killers BEFORE I go blowing my $ on expensive probiotics that won't stick.
I'm pretty sure it was CRV that posted this elsewhere but they mention k.Phneum specifically where it says,
"Harmful Bacteria Protocol"

Any opinions on the biofase listed in the same article?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/11/14 10:41 PM
I've never really heard of Biofase but if I need to later I might look into it. I don't believe I have a Candida problem.

On Friday last week I did a high dose of Borax. About 60 mg for the day. Didn't really notice anything on the day, but the following day after lunch I suffered bad headaches for the rest of the day and was sensitive to light as a result. Haven't had that in a long long time. So I went back to a light dose (6mg per day) Borax over the weekend.

Yesterday I did a carb load day experiment. 200 grams Potatoes with lunch, a green banana smoothie in the afternoon and a big Apple, and another 200 grams of Potatoes with dinner (200 grams is quite a big serve on my plate), and my usual 4 tablespoons of Potato Starch. Its not affecting me. I've managed to stay off Dyclofenac for over a 9 or 10 days as well so nothing is getting masked. I'm not as pain free as I would be if I were to take Dyclofenac.....but its also not affecting anything I do physically. Most of my problems come from sitting for long periods (pain) and I can fix it by getting up and moving. I seem to not be affected by Rice, green bananas or potatoes. I wonder if this is due to Potato Starch since I have only tried these things since taking PS.

My moods have changed. A calmness had descended upon me over everything I do. No anxiety over anything.

I'm eating starchy carbs every night of the week and sometimes for lunch too! Who would have thought. I have less fear about which foods might be affecting me (normally eat 25 - 40 grams of dark chocolate per night which I used to have a question mark over) with the exception that I won't eat processed foods/drink, and I won't touch fruit juices either. I'm continue to eat mostly meats, eggs, fats, veges (broccoli, cauliflower mostly), no dairy and now add in a bit of starchy carbs. Am less concerned about how dark chocolate might affect me (usually eat 25 grams at night) after dinner.

All far I'm miles away from where I was just 5 weeks ago before I started on PS. I've had some weird dreams too (like last night). I wake up and start doing things (like last night I checked my alarm clock), and then realise I'm not awake....I'm still asleep. Its difficult to know if I'm awake or asleep at this point. My body is asleep but my mind is fully conscious. Other times I wake up from dreams, only to wake up again from another dream. A multi layered dream state if you will.

I can't wait to see what is going to happen when I get hold of some soil based probiotics. So far the only probiotics I've taken is a local natural fermented Sauerkraut.

Anyhow, the benefits are far outweighing any negatives.

I also found this link yesterday which explains things in more plan English and has some good info on volumes of RS in foods.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/11/14 10:44 PM
I should also point out that on the Saturday I had the headaches, I did a spit test to measure my PH which came back a lower than normal and under the desired range. I took some Soda Bicarbonate in water and measured again the same time next day (Sunday) and was back to normal again. Not sure if Borax made me go acidic, or it could have also just been a lack of veges the previous couple of days (more salads instead).

I'm going to take another high dose of Borax today so will see tomorrow.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/12/14 06:02 AM
That's wicked Dlee!!! I'm really excited for you! That sound you just heard was everybody on clicking the "buy now" button for bob's red mill PS.
Now let me ride your Coat Tails wink
Did you generally take all 4 tbs at one time or spread out? empty stomach?with food? Did you have bad reactions to potatoes before you got on PS?
I looked back at your intermittent fasting comment and figured that you might be on, roughly, an 8 hr eating window?
Were you simply following instructions from the borax article or did you venture off and do something different?
My gut is really messed up I think. I keep getting gassy pressure in the same area of my stomach(about 4cm under the rib cage and 3cm to the right of my belly button) I still have really stinky gas but have decided to be ignorantly optimistic and stick with it in the hopes that there's something in that spot that needs fixing. I'll give it a moth and a half more of the ps and pro-b's. If no difference is felt, I'll consider a biofilm disrupting/SIBO protocol and then get back on it.

I asked about the biofase as I believe that most auto immune sufferers have sibo.(interphase plus is cheaper an widely recommended) I also think that a good majority of those with sibo have biofilms. Actually, I'm confused as to wether or not there is a difference between the two as the treatment looks the same.

I'm considering ordering some interphase, N acetylcysteine(or Kirkman Biofilm Defense bcuz it doesn't contain egg whites), lactoferrin, Serrapeptase, Nattokinase and lauracidin. Herbals etc. after if needed. Or simply take Rifraximin being described as a narrow spectrum antibiotic if that fails. Has anybody attacked biofilms/sibo in a similar manner before? These articles AGAIN make me wonder if I'm simply feeding the bad bacteria my expensive probiotics. Does anyone see any harm in trying a 1 and a half month protocol of the products listed above?

I still haven't been feeling great recently but am re-energized by your write ups, Copen and Dlee. Keep it going and don't mess it up like I did by adding a bunch of new spices, dark chocolate(which I know crushes me) various forms of RS, pro and prebiotics at the same time. I'm still effected 4 days later but have vowed to be 100% thorough in my future introduction processes because of it.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/12/14 10:35 PM
Normally I have been taking PS twice per day 2 tablespoons at a time usually in the evening. 2 around 4 hours before bed and 2 just before bed. But just this week I have switched to 4 tablespoons once per day 4-5 hours before bed. (I take it before dinner on empty'ish stomach) and soon after followed by main evening meal. The idea is I'm timing it to be in large intestines sometime around the time I go to bed which can take around 5-6 hours I believe. But from what I read it doesn't seem to matter when you take it as the effects last a long time.

No I was too scared to try Potatoes beforehand....or any other starch. I didn't want to go back to the chronic pain I used to have. I went to many lengths to remove all starch from my diet by measuring everything with Iodine and reading all labels. My diet was made up of foods I knew to be safe and I didn't deviate. The NSD worked for me to get get my pain and inflammation under control quite quickly so I stuck with it for the next 2 years. I remember at one point along the elimination of foods journey that I was having problems with the starch in cooked Zucchinis so figured I was fairly sensitive to starch content. Then I eliminated dairy along the journey as well with good results.

I only recently (start of this year) added in the fasting regime off which I follow now mainly because it suits me and I find it easy to do. I have always been a fan of fasting. I only eat between 1pm and 9/10pm ish. The rest of the time its water and black coffee only. Basically to extend out the fasting period from sleep and induce a longer period of autophagy each day which requires prolonged periods of no calorie intake. I try to eat as much calories in the 8 hour window as I normally would, but the reality is I find this difficult. I eat big satisfying meals as a result (2 main meals..lunch and dinner) and use a lot of added fats in the form of olive oil on salads (4 tablespoon at a time usually) or big tablespoons dollops of coconut oil spread over veges with dinner. I have been known to skull back a shot glass of olive oil too if I feel my calorie intake has been too low.

An hour before bed I eat a decent serving of coconut cream (high in fat) with big handful of blueberries, raisens, coconut flakes, and maybe some egg white protein powder added for taste and a few nuts. I don't go to bed hungry. It is a big bowl of food.

Daily supplements are Omega 3 salmon fish oil (looking for of 2 g EPA and 1.5 g DHA - usually 7 -10 caps), 500 mg magensium, 1000mg, vit C (taken at night before bed well away from any coffee intake which flushes it out).

My regime is consistent each and every day. Exercise is 3 times per week for 30 - 45 mins at a time (heavy low rep weights for strength training as per website) NOT bust a gut with high rep "feel the burn" type training. I'm looking for short intense periods of heavy lifting for each exercise with 5 mins in between to recover and go again.....not long 5 set repetitions of exercises to muscle failure with 30 - 60 seconds pause between each which I end up hating.

e.g. Monday - Squats - 2 x 6-8 reps with 5 mins rest in between each set followed by 2 x 6-8 reps of military shoulder press followed by 2 sets of pull ups (as many as I can do)

Wednesday - 2 x 6-8 of bench press, 2 sets of pull ups, 2 x 6-8 of overhead tricep extensions

Friday - 2 x 5 -7 of deadlifts followed by 2 sets of chin ups (as many as I can do)

My goal is to increase strength... not a cardio burn. I tend to go for a 30 minute walk on Saturday or Sunday if the weather is nice and I feel like it. (good for joint mobility I find).

30 - 45 mins 3 x per week works for me and keeps my motivation.

I think that's the key elements of everything I'm doing at the moment anyhow. Except now I'm experimenting with 1/8 teaspoon of borax in 1 litre of water per day which is giving me headaches so maybe I do have some internal fungus issues to sort out.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/13/14 01:04 PM
A very well thought out and executed regimen!

You've inspired me to go get a gym pass. Exercise performance is a solid way of gauging where you're at physically. And I've maxed out my progressive at home bodyweight routine. Very similar to yours. Push ups, squats, chins/pulls 2-3 x's/week. I need weights though.

I'm going to make a few tweaks to my routine based on your write up.

I started the 8 hour eating window fast two days ago. I find myself a bit more wound up and stressed. Is that pretty typical?

I got two separate, wake me out of deep sleep, lightning bolts to the brain headaches when I was taking boron. Don't know if that's the reason. I've had tinea versicolor a few times in the past(years apart from each other) which I think is a fungal infection. It would make sense if it were still lingering in m system some where. It's about time I got a test that can determine which critters I'm battling. I need to order the tests myself. Anybody know if these would tell me most that I need to know in that department? eg. potential parasites, fungal infections, general gut bacteria etc? I've read that the gi effects 2200 is the Rolls Royce of stool tests but you need a doctor to order it.

this place lets you order them as a patient but I'm not certain which ones to get. I was thinking about these two.

Insight or opinions on those?

Thanks for the thorough run down on your day to day. Much appreciated. Now I'm off to get a gym pass...tomorrow wink
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/14/14 08:32 AM
Slight correct. On Wednesday I do 2 sets of DIPS not pull ups.

Wound up and stressed....I was typically I realise now prior to taking PS and adding carbs back in. It affected my sleep terribly as a result. From what I read, that was possibly a symptom of a prolonged very low carb diet and boosted cortisol hormone as a result. Cortisol is naturally at its peak in the mornings (30 minutes after waking typically) as part of the waking process. Add in a coffee (which I do) and you will be ready to rock. I use this period to my advantage by waking up and getting on with whatever needs doing to midday.

If you still feel the same way at night or your sleep is bad, I would try Potato Starch 4-5 hours before bed, and if good with that try starchy carbs like Potatoes/rice (in small amounts to start) every 2nd day or so (preferably after your workout where they have the most use).

I don't really feel stressed these days even in the mornings. Black Coffee on an empty stomach could be doing that. I like that feeling, and I also find after a while that you get used to that caffeine. Its a big energy boost to me, but everyone is different.

Borax - I pushed on with the high dose regardless and pushed through the headaches and gut aches. Today I feel relaxed and have that washed out feeling like what you get after recovering from a bout of a stomach bug. The borax is doing something...I'm presuming that its attacked some fungus, which in turn has produced some toxins in defence, which gave me headaches, tiredness, sensitivity to light, lack of hunger and a general horrible feeling ...almost nausea but not quite....and now I've got through it and maybe killed something (fungus maybe) in the process. The aches and pains I normally get at night, weren't so bad last night and stayed away today as well. Lets see how it is after a week of 5 days of borax and 2 days off.

I haven't had any lab tests done so don't have a clue what I may or may not be battling.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/14/14 08:34 AM
Just correction above.....Black coffee on an empty stomach could be making you feel stressed and over amped that is. It boost cortisol as well. I only have coffee when I wake and at 10am most days.
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 05/15/14 06:12 AM
Thanks for the info on your workouts Dlee. How have you gone (in the past and recently) with maintaining or gaining muscle mass? I lost a fair whack of muscle when I did that three day water fast about six months ago and haven't been able to put it back on.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/15/14 08:33 AM
I'm 6'3 and have been around 83 kgs for the last 2 years since starting NSD (dropped a heap of weight quickly). I tend to bottom out at 82/83 kgs and don't go any lower than that. That's 83kgs of lean body and no muscle ......people say I look like a lollipop with a big skinny head and a skinny body (like an alien). So I want to add some lean muscle.

I've been doing weights for many years.....but just the a useless regime really and didn't put proper effort into it or have the right gear. And no real gains as a result.

I've been doing this regime only fully for the last 5 weeks since getting a weight cage for home (I hate going to a gym I'd rather have the gear at home). I'm up to 87 kgs. When I took PS for the first 2-3 weeks I rocketed up to 90kg but that's typical apparently and it comes back down which has proven to be the case. I seem to have settled for now around 87kgs so gained 3-4 kgs somewhere....its not fat. There are changes taking place and I'm starting to like what I see. You don't need to add much muscle to make a difference when you are already lean. Abs are starting to come out from those squats and dead lifts.

I've got a few tricks to try yet all in good time. Creatine and a pre workout BCCA amino acid boost. But 1 thing at a time first. Borax, Potato starch and starchy post workout carbs is the main focus for now. I'm expecting by the end of this year to be around 90-92 kgs.....these things don't happen fast unless you popping steroids smile
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/16/14 03:29 AM
Stress is correcting itself more and more every day:)

Morning pain has been through the roof the last few days! Diet has been great so I'm not sure what's going on? Felt major pressure in my stomach for a while but when it disappeared, the pain increased 100 fold. I'm again being positive in thinking that it was something that needed to get outta there and increased my pain when the waste entered my system. But probably due to the fact that I'm off my meds entirely and my immune system is getting out of being suppressed.

I have a tub of creatine monhydrate that I'm waiting to dive into. Like you, I want to know where I stand before I add that back in again. Aside from addng pstarch and pro-b's, I didn't do anything extra but somehow gained 4-5 kilos of muscle in the last 2-3 months. I'm 6 feet and was 150 but now am 162. I seem to be stable at this point. When I add creatine though, I anticipate gaining a further 10 lbs as I did before I wanted to stop using it. Target is 170.
This interview is pretty convincing regarding the efficacy of creatine. In short, creatine is a great supplement for anybody that does any form of exercise.

This place has tons of quick and easy reads for exercises and supplement recs. I always get sucked in to the "top ten" type lists.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/16/14 04:28 AM
Every time I tried to get off my meds in the past I eventually suffer a slow insidious creep in inflammation until it evetually got too much (sometimes 48 hours, sometimes 4 days, sometimes 1 week). When I was fed up I had no hesitation getting right back on my meds (Dyclofenac). There's just no need to suffer I figure. But I was always annoyed that I had to got back on meds that in all reality are most likely preventing a full recovery.

I've been off my meds for 2 weeks now and feel pretty good. Possibly its PS, possibly its Borax.....maybe both.....Today is the last day of my 5 days of 1/8 teaspoon per day of Borax and then 2 days break from it. A mixed week really......absolute terrible headaches on Tuesday and slight nausea....washed out feeling of recovering from something on Wednesday, slight headache and mild nausea feeling yesterday......and back to normal today. Meanwhile, inflammation is at low levels generally and settling down at nights. Be interested to see what next week is like when I start up again with Borax on Monday.

Hope you can get your inflammation under control. Maybe go back on your meds for a few days.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/17/14 10:32 PM
Couldn't sleep or do anything at all within the first 3-4 hours of waking. Told myself I'd take enbrel if it didn't go away after about 5-6 days. Pride is more malleable than spinal fusion. Took a shot of enbrel yesterday and was able to sleep for 8 hrs. Felt pressure and light sensitivity in my left eye again so I took a couple drops of prednislone to get on top of that straight away.
Frustrating to say the least. Over 6 weeks with no meds until yesterday. Can't find any reason to think that biologics are hurting me but I know after my recent pain that they definitely weren't permenantly fixing anything. I wonder what did me in? My stress levels are really low. I didn't have the guts to figure out wether or not it was "die off" symptoms or herxing and bear through it. Right after my pressure filled stinky gas belly went away, the pain swooped in hard. Apart from pstarch, the only starch I ate was 1 cooked carrot spaced out over 2 days in four bowls of soup.
I'm routing for you Dlee. Based on the foods you can tolerate and the work you've done in the last couple years, you're gut looks to be in decent shape.

I've ordered LDN and am hoping that it'll get my iritis under control and give me the possibility to stay geographically mobile. 50-100$ per month as opposed to 1500-1600$ for enbrel. That only really matters if it works though, I suppose.

I'm interested to know what your reactions will be on Monday too. Hopefully your discomfort lessens with time and will be a possible sign of fewer internal fungal issues.
Posted By: MollyC1i Re: CURING AUTOIMMUNE DISEASE - 05/18/14 08:25 AM
CoatTails, remember that there is no cure for AS. LDN is a terrific drug that certainly helps with inflammation, with iritis/uveitis and with gut problems but a magic want it aint, though a very useful and efficacious drug it is - that is for many but does not work on all. (AS an aside, LDN can be given to cats and dogs ! Discussion on the LDN forum treats of animals as well.)

Give LDN time to work. For some it takes a couple of months or more for others, like myself, it worked from the get-go, especially on my gut problems.

Look forward to your updates - take care -
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/19/14 06:48 AM
Molly, but I could sooo use a magic wand right about now. I'm hoping that I'm one of those that it does work for. If it can help even in the slightest with my uveitis, I'll be a very happy guy. You know you're in a bad state when you're praying it's pink eye;)
I'll give it some time and see how I feel.
Thanks for putting me on to that info.

Enbrel is definitely working for me, just not as well as it used to. I'm treating my eye with a few drops of pred per day on top. I'm very lucky to have those options.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/20/14 09:12 PM
Rather annoyingly I have had a flare up on the weekend. I thought it was going away on Monday after starting on Borax again, but then when I did some squat exercises in the early evening I enraged it almost instantly and since then its not been the greatest. I knew I was in trouble from the 1st squat as it didn't appear some muscles were working properly and I felt weakened. Last 2 nights I've been waking up 10 times a night never comfortable and when I turn it hurts. As a result I don't sleep very deep. Everything feels wound up tight.

I'm thinking of taking a dyclofenac at lunch today before my exercises tonight and knock it back a bit. Its hard work putting my socks and shoes on at the moment. Tonight I'm planning on doing my exercises and then eat quite a lot of fried Potato with my roast chicken afterwards! I'm not so sure this isn't just a normal flare up after being off dyclofenac for nearly 3 weeks. I used to get variations in flares when totally starch free as well.

However, I did drink a beer on the weekend (which I don't normally but it was offered already open and I didn't want to disappoint) and I did eat a fair amount of basmati brown rice (I normally eat white basmati). And then I did also eat a small desert my wife had made (using almond flour) for guests which contained baking powder. Ha...bit of a silly weekend perhaps.

Anyhow, I find once inflammation gets to a certain level I need a pill or 3 over the next few days to get it under control again.

Onto Borax....I've resumed my 1/8 teaspoon per day and no headaches or nausea this week. I might just ease back on the borax and get back to a more normal dose next week (around 12mg boron per day I think). It doesn't seem to help reduce flares.

Time to order some soil based probiotics.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/21/14 09:59 PM
Took a dyclofenac with lunch yesterday, within 3 hours my inflammation had dropped massively and I had a good intense session of weights later that early evening. Then finished off with a nice meal of Chicken breast, Potatoes, sweet Potato and Brocolli and bacon salad. Slept well and feel great. I also had Potato Starch with lunch thinking I would try to time it 3-4 hours pre workout. Seemed to have done something. I felt great and was able to lift heavier.
Posted By: copen Re: CURING AUTOIMMUNE DISEASE - 05/22/14 08:31 AM
Ooh CoatTails, I'm really sorry you're feeling so poorly. Sounds miserable. Are you still taking the potato starch or giving it a break?
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/24/14 12:02 PM
Enbrel was enough to loosen Chuck Norris' lasso from around my spine and the eye drops worked almost instantly. Not to worry but appreciate your sympathy. I gave the pstarch a week break or so but then came back hard and heavy. 4 tbs/day mixing in little bits of banana and plantain flour and 3 of each of the three different kinds of probiotics. I'll do that for ten days and then space them out afterwards.(as per R.Nikoley's recs.) Belly pressure went away along with the gas not too long after. I feel getting back on it hasn't made a difference as far as my iritis is concerned.

The old sock and shoe game, hey Dlee? I have one pair of shoes that are unrealistically tough to get on. Putting them on recently made me realize the state I was in. Frustrating for myself in that the pain levels(albeit briefly) were some of the worst I've ever had.. I'm finally gaining weight, my complexion is better, digestion and bm's are perfect, my body composition is almost exactly where I want it to be. I think that's why I was so shocked that after everything I'd done and progress I've seen elsewhere, that it didn't seem to make a lick of a difference when it came to managing my AS symptoms.

I'm currently on a hunt for starchy foods that don't bother me, if there are any? White potatoes cooked and cooled cause way more pain than sweet potatoes but yams induce the least so far. Maybe they all do but the biologics just make me feel less pain? Does anyone else notice a better tolerance to certain kinds of starchy foods vs. other ones? You've been eating quite a few potaoes, Dlee. Is there an amount threshold that you've noticed at all?

I was pumped up to see a pic of you squatting 6 plates on each side at the 2014 AS Olympics wink but that link is broken. Where were the games held this year?
If you re-post it, now anything less than 6 plates will be a HUGE disappointment. And unacceptable smile
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/25/14 12:05 AM
I'm not sure on thresholds yet. There could well be a threshold I'm thinking but like everything, hard to know for sure. I have been eating larger and larger amounts of Potato's on my workout evenings. Inflammation has gone up a bit but early days to know for sure. I'm not so sure about rice so taking a break from that and will re-introduce it a bit later again. Its easy to start eating large amounts of carbs again if you don't watch yourself and I still want my diet to be predominantly low carb. I caught myself eating them just about every night (which I wanted to for an experiment on tolerance) but would be easy to continue on with that if you let yourself.

I think now I just eat them for post exercise glycogen replenishment....and because they taste so damned good and good to add some variety back in. I'm not eating them for the RS really. I get the RS from Pstarch mostly.

Yeah I'm about to order some probiotics myself. Just waiting for more funds to come in.

no no that wasn't a pic of me squatting huge amounts of weights. I'm not there yet. Maybe after a year. That was a pic of what I ate that night which was a nice chicken breast, brocolli and bacon salad and a decent serve of fried potato and roasted sweet potato smile
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/25/14 12:09 AM
Have you noticed deeper sleep and more vivid dreams CoatTails? Especially with those probiotics?
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 05/27/14 01:20 PM
I've been on eating a small yam or small sweet potato every day now as well. I take my sweet time on those bites. Fried, roasted? Way more classy than my shoving a weeks supply of potatoes in the oven. I find myself low carb regardless of what I do. It's tough to eat 100- 200 carb grams from berries every day. I've been trying to add about 4-5 scoops dextrose daily to make up for the lack of carbs but it's just too sweet. Really good though with coconut flakes, egg yolks, cocnut flour, lots of ccnt oil, vanilla and raisins. I just mash it all together and pop them in some strangely shaped ice cube trays. Freeze them. Eat them cold. I'm so deprived that those are actually really delicious for me!

I don't have the intense dreams like before but I do get a deep sleep. Still waking from pain but maybe not moving AT ALL for 7 hours is partially the culprit. I don't feel that the probiotics change anything sleep-wise. I've been doing them(with 4tbs RS) at hour 15 of my 16 hour fast. No issues at all. I exercised yesterday, didn't fast and took the mix 30 mins before my breakfast. I got really gassy but no discomfort this time around. Timing and/or food intake makes a big difference for me.

Are you able to order prescript assist etc. in New Zealand? They won't ship it to Canada but I can drive over to The States in less than an hour.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 05/27/14 11:55 PM
Yeah I can get Prescript Assist in NZ, and the other one just not the AOR Probiotic 3. But I can always order them on Amazon as well I just hate the waiting for it to arrive.

I'm watching my carb intake a little at the moment due to a rise in inflammation requiring daily dose of NSAID. I'm wondering if that has more to do with the cold temperature drop as winter arrives and also like you, I have a job where I sit 8 hours a day which never helps. So back to eating maybe 150-200 grams of Potato 3 times a week for now after exercise. I continue with PS @ 4 tablespoons daily.

Recently I have started taking 2 of the 4 tablespoons of PS about 3-4 hours before exercise. It seems to give me a huge boost during exercise although still working on that theory.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 06/02/14 01:36 PM
1 yam hasn't been bothering me but 3 small yams(1lb) are too much.
Pstarch hasn't been causing any pain.
I'm pretty sure the banana flour was a big factor in my mystery pain levels too.(and possibly uveitis?) I eliminated all potential factors and got rid of the pain(added enbrel tho) Added back the banana flour and the pain came back.

I'm done with my 10 day onslaught of pro-b's. From now I'll just do 1 pill of one of the three types per day. If they haven't "stuck" by now I doubt they ever will without changing something beforehand. I'll switch up the amount/times etc. of pstarch from here on too.

I'm not gonna give up on this angle for a while yet but aside from the initial uncomfortable gas and bm regularity, I haven't noticed many differences, better or worse. I'm a firm believer in the fact that it takes a LONG time to even slightly recover and try to keep that in mind to keep me from being discouraged.

Has anyone else noticed any positive effects in relation to your spondyloarthropathy from pstarch/ pro-b?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/02/14 08:41 PM
I have taken taken any probiotics yet other than buying a local fresh Sauerkraut. I haven't as yet noticed any improvement in levels of inflammation. Seems wander around a little as per how it always has but never really bad unless I'm off my NSAID's (at the moment I'm on them).

However, I have noticed massive improvements in other areas like sleep quality, mood regulation, bowel motions, and energy levels when doing lifting exercises. Just a better overall sense of well being.

And it has helped me to expand the foods I eat. Last nights dinner was a whopping 550 grams of boiled Potatos, roast chicken and gravy. Followed up by homemade dark chocolate coconut milk icecream, and a couple of coconut flour chocolate chip cookies with it. Pig heaven! I wanted to really spike my insulin. Cookies and cream....I'm doing this every workout night now. As many boiled Potatos as I can eat and cookies and cream. Then in between, back to high fat, low carb and intermittent fasting.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/02/14 08:45 PM
I've given up frying potatos in fat. I found that to be the cause of really bad gas and I'm not sure now about mixing carbs and fats too much. Frying potatos in fat makes them hyper desirable. Just sticking to boiled with gravy poured all over them typically. (Gravy made with Potato Starch for thickener now).
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 06/03/14 04:36 AM
Seeing as your starting sbo's soon. This has some interesting info on probiotic combos for better efficacy. Their methods are pretty complex but I'm going to start making do with what I've got.

I read on freetheanimal about Lactobacillus reuteri. Found this article;

I know we don't have NEC but the whole thing feels familiar.

Pig heaven is right! You seem to be tolerating them really well so why not enjoy it. A lot of the improvements you listed are described in the PHD book as benefits of adding "safe starches."

I'm freshly medicated and eating starchy foods as well. 1 cup of rice per day for the last two days and wonder if damage is still being done unknowingly. When I did eat 3 yams in a day, I definitely felt it. And that was fresh after a shot of enbrel. You have an opinion on the possible numbed damage being done, one way or another?

Did you buy your coconut milk ice cream or make it yourself?
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/04/14 12:36 AM
Thanks for those links. Maybe I should read the PHD book. Glad to hear you are eating some starches and doing ok. My take on damage is that it's done by inflammation. I could be wrong...but that's what it believe. Control the inflammation and control the damage. Ultimately I'm hoping eating resistant starch and eventually adding in more beneficial bacteria produces TREG cells to keep the T cells in check.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/04/14 12:38 AM
And lack of movement for damage too. I find you have to control the be able to keep yourself moving. I'm at my worst when I'm inactive.
Posted By: MollyC1i Re: CURING AUTOIMMUNE DISEASE - 06/04/14 03:59 AM
Yes. Keep as active as you can - crucial. Move it or loose it, as they say ! And, inflammation is the agent of damage. Hence the use of the antiinflammatories, IF you can stomach em (I can't). The LDN keeps the inflammation in check for me, and I use pain meds for any breakthrough pain : Paracetamol / codeine. But oinly rarely need to touch em. LDN and care re diet keeps problems in reasonable control. Neck, lower spine, SIs and peripheral neuropathy are the worst areas. Could be worse <smile>.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/04/14 09:56 PM
Oh yeah, Icecream....i make my own. Real easy. The recipe I use is.

1 x can of coconut milk (50% stuff not the full fat cream).
4 x eggs (yolks and white separated)
125 grams of dark chocolate
1 x tablespoon of sugar (just sugar to your preference really)
1 x teaspoon Vanilla essence
3 x tablespoons of Vodka (not for taste, but to help stop it from overfreezing to rock hard)

Melt the chocolate.
Tip it into a bowl with the coconut milk
Add in the egg yolks, vanilla and vodka.
Give it all a good beating with electric beater until mixed
In another bowl, whip up the egg whites with your sugar until stiff frothy mixture. Fold it into your chocolate coconut milk mix until nicely mixed.

Then at that point I put it in a cheap icecream maker and let it churn for 20 - 30 mins.

If you don't have an icecream maker, just pour it directly into whatever you are going to keep it in, and put in the freezer.

When I want to eat it, I take it out of the freezer about 30 -50 mins before I want to eat it. It freezes quite hard and needs softening.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 06/04/14 11:17 PM
PHD is my favorite health related book. It touches on auto immunity and cancer. Two birds, one book.
When you say 'adding in more beneficial bacteria' do you mean the pro-b's?
I'm glad I'm handling starchy foods, too! 1 cup of rice and 1 small yam yesterday(body weight exercise day)

That article you posted, Molly, explains the faster speed of ankylosis from inflammation really well.

Wether or not we induce calcification faster by eating trigger foods that no longer present symptoms is a question that will be answered in the years to come, I guess.

I couldn't agree more about inactivity being a big factor in AS inflammation. I want a recliner for that reason. It's impossible to find a position I can be in for too long with my current couch. Exercise has to fit in the Goldilocks zone for myself.

LDN, two birds, one drug. Started last night. I don't think it had any effect but I was happy to have slept like a log after reading that one of the only side effects is sleeplessness. My dream is to retire in Thailand and farm out my days in the sun on a tropical island where my Wife is from.(on a very low budget) Our family has tons of land and all the seafood I can eat. I don't foresee that being a possibility whilst having to pay 1600$ per month for bio's. I could cut down the intervals and eventually they have to come down in price but still. My hope is that LDN along with diet/exercise/OTC pain killers will be enough. The LDN package came from Thailand. I'm sure I can find it myself over there.

Remember those kids in elementary who when you simply whispered in their direction they would start sneezing, get watery eyes, a runny nose, develop a rash and get a nose bleed? I kind of feel like one of those kids when I saw your recipe for coconut ice cream. That sounds super delicious and would be a relatively healthy treat for 99% of the population but I have MAJOR problems with chocolate and egg whites. I might just eliminate all ingredients except coconut milk and vodka wink but only smirnoff red label, gluten free wink and hope that I don't have/develop corn issues ;(
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/05/14 02:27 AM
Yes by beneficial gut bacteria I mean pro-b's. I'm even contemplating eating some mud. In fact the other week, I took some muddy beet skins that my wife had peeled and put them in a glass of potato starch and water. Hoping any bugs in the mud on the skins would attach to the starch (which I read they would do fast) and then downed that was err gritty.

Last night was carb night for me too. 450 grams of Potato and this time I added 150 grams of white long grain rice too. Then followed up with 2 coconut biscuits again, big bowl of my icecream, and green banana and blueberries. I hate carb night smile

I'm still amazed I can eat this stuff now. I'm eating increasing amounts of those starchy carbs and going overboard because 1. I want the calories for my build muscle experiment and I can't get them by eating clean and intermittent fasting all the just too filling, and 2. I want to see they knock me over.

Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 06/09/14 03:14 AM
Muddy beat and potato starch juice... yum! Just to one up you I've been collecting ancient well-circulated coins and suck on them like tic tacs smile Is it odd that my breath still stinks?

New RS info over at drbg and FTA.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/09/14 07:59 AM
Yuck old coins! That a step too far for me! Yeah read those articles. I've added flax seed back in and tomorrow night I'm making my old favourite....chilli con carne and I'm putting the red kidney bean IN.
Posted By: CoatTails Re: CURING AUTOIMMUNE DISEASE - 06/12/14 01:17 PM
How'd the red kidney beans go down?

I'm a pretty useless RS for AS tester at the moment. I'm on enbrel and LDN. I'm encouraged by your tolerance levels. I wonder if it was your strict NSD or a combination of a lot of things?

This study kind of answers my prior question about our meds masking triggers and potentially exacerbating the permeability of an already leaky gut.

Seeing as our meds(biologx and nsaids) do nothing to alter gut flora, I don't see why the klebs wouldn't continue to stealthily run rampant, creating further leaks and in turn intolerances, inflammation and a domino effect of auto immune issues. Avoiding inflammation is still WAY better than not but interesting to know.
The opposite effect of Lactobacillus brevis is good to know of too.

All of that being said, I'm still eating 1/3 lb of cooked and cooked and cooled yams and or sweet potatoes. Tried to cook taro but failed miserably. I throw a half cup-1 cup of rice in the mix every once in a while on exercise days but don't go past where I thought I could go pre medicine.

Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/12/14 08:56 PM
The red kidney beans went down very nicely. I enjoyed them a lot. I made that on Tuesday night, had some leftovers which I ate with rice yesterday (Thursday) for lunch. I ate a decent cup and a half of white rice with it as well both times.

Inflammation has been pretty good this week. I must warn however, I'm still taking my 100 mg of dyclofenac once per day. I do think it has increased inflammation a little bit.

My thoughts are...I will keep taking the dyclofenac for now as often as I need, get some of these foods in me that should feed gut bacteria and in turn strengthen the immune. I'm interested in what Art Ayers articles say about the immune producing TREG (T regulator cells) from the intestines which are cells that basically regulate the killer T cells not to attack the body. So based on that, I'm eating these "clean" and natural starch sources to feed the gut bacteria in the hope of producing a healthier immune full of TREG cells. Yes I think there is more inflammation as a result but its its not astronomical like it was in the past.

I have to give that a decent amount of time I feel to see how that works for me. 6 months at least I would think.

In the meantime, I'm having a good time eating those clean starches. Alternating high starch nights (where I eat around 550 grams of Potato or sweet potatoes) with my main meal (that's a LOT, half my plate at least) or half the amount of potatos, and add in some rice instead, and now adding in some kidney beans into Chilli dish. Then typically eat a green banana (or ripe one for that matter if I don't have a green one) with desert.

On my high starch nights I'm pigging out on my coconut cream chocolate ice cream as well for desert and add in a couple of coconut flour choc chip biscuits as well. I'm using the carbs to boost my total calories past 3500 on workout days. Try eating 3500 calories in just meat, eggs, fat and vege. I've tried.....its too hard and doesn't make you feel good whereas I can eat Potatos until I'm ready to burst, and then be ready to eat again in 90 minutes. They digest fast. It stokes up my metabolism which is great on workout nights. Slowly gaining weight. Gone from 84 kgs to 91kgs now over the last 2 months. I'm gaining weight at around .5 to 1 kg per week or 2. Its not fat.

Most of all....I feel great and my strength is increasing each week on the weights.
Posted By: dlee Re: CURING AUTOIMMUNE DISEASE - 06/12/14 09:01 PM
Oh yeah, this week I have also added in small amounts of full fat natural Yoghurt back into my diet with seemingly no bad effects.

And yesterday I've also switched from Egg White protein powder (eat enough eggs anyhow) to natural unflavored, Whey protein powder. I ate my first lot last night and no problems this morning. I want to switch to Whey because it has a lot of amino acids in it and has Glutamine in it which I read has beneficial effects in a study somewhere for leaky gut. Might have been in this forum actually in one of the recent studies posted up.
Posted By: Jesse_nutrition Re: CURING AUTOIMMUNE DISEASE - 02/22/16 05:01 AM
Just be cautious when incorporating fermented foods. I recently wrote a post stating the correlation between autoimmune disorders and dysbiosis or bacterial overgrowth. Eating fermented foods can actually release gasses in the small intestine which favour the proliferation of unwanted gut bacteria. Ideally, you should work towards reducing candidiasis and restoring a good healthy microbial balance in the gut. Once this has been accomplished it's essential to reintroduce fermented foods and probiotics.