The Resistant Starch Challenge: Is It The Key We've Been Looking For?

[Sushi]

This is indeed a long and wandering thread.

Now at 84 pages, I presume from this length that resistance starch must have proven helpful and beneficial for at least some aspects of ME/CFS.

Would anyone be able to summarize the actual observed benefits that ME/CFS patients on this forum have noticed from taking resistance starch. What ME/CFS symptoms does it improve? I notice that @Sushi commented earlier it helped reduce PEM.

Or, a separate thread could be started--something like: Resistant Starch--discussion of benefits/adverse effects--only.

Thoughts? Many who are interested in it can't wade through the 84 page discussion...and, it would be too difficult to separate out the "actual observed effects" from the existing thread.

Sushi

 

[Vegas]

Or, a separate thread could be started--something like: Resistant Starch--discussion of benefits/adverse effects--only.

Thoughts? Many who are interested in it can't wade through the 84 page discussion...and, it would be too difficult to separate out the "actual observed effects" from the existing thread.

Sushi

I certainly can't read through all that crap I wrote. Judging from the puzzled reactions I get when I speak about this stuff, I can see why.

Anyway, actual observed effects:

Significantly reduced P.E.M.
Reduced, but variable fatigue
Less mood instability (after quite a bit of volatility)
Greater sense of calmness, although I haven't experienced true anxiety in a very long time
Diminished brain fog
Significant improvement of all food sensitivities
Near resolution of Raynaud's
Improved glycemic stability

The more prominent recent developments relate to the lessening of many of the cytokine symptoms, particularly the achiness and more generalized flu-like feeling. My liver is still processing what I believe to be endotoxins, but the lymphatics are less engaged.

The principal negative effects include:
Lately, lots of nausea.
GI discomfort
Despite significant improvement in fatigue, there are those moments
Some myoclonus symptoms, I absolutely hate this and remember this from the "old days"
Knee pain, crepitus, which I think relates to the rapid increase in uric acid but this resolved pretty quickly when I cut the chitin-glucan way back.

I'll edit this list if I think of other things.

**What i think warrants clarification is that I have vigorously exerted myself on a number of different occasions with very different effects in terms of the severity of P.E.M. symptoms. I firmly believe that the variability principally relates to the circulating endotoxins and their ability to oxidize GSH. So, while there have been marked changes in PEM, there are days where I simply have to be more careful because this antioxidant capacity is depleted.

 

[Hip]

That's very interesting, @Ripley. So you are saying that increased energy and reduced PEM are the main observed benefits of resistant starch in some ME/CFS patients, but equally, other ME/CFS patients find they feel worse on RS.

What has been the general RS dose used by ME/CFS patients on this thread when trying RS? And was it Bob's Red MIll Unmodified Potato Starch they all used?

What about the probiotics? Did all the ME/CFS patients also take probiotics, or did some patients just use resistant starch alone?


@Vegas. Thanks for listing the positive and negative effects you experienced from RS. The near resolution of Raynaud's sounds particularly intriguing and impressive. What dose of RS did you take to achieve these effects (ie, how many heaped teaspoons of RS, and how many times a day)? Did you use Bob's Red MIll Unmodified Potato Starch?

 

[Ripley]

So you are saying that increased energy and reduced PEM are the main observed benefits of resistant starch in some ME/CFS patients, but equally, other ME/CFS patients find they feel worse on RS.

Well, I believe some ME/CFS patients felt worse or at least felt better and then worse. I think it was a minority of the people. @dmholmes is the one who comes to mind. He had a rough time after some initial success if I recall. Would love to hear how he's doing and hope he's ok.

But, I think most have had some level of success here by modulating their flora with prebiotics.

What has been the general RS dose used by ME/CFS patients on this thread when trying RS? And was it Bob's Red MIll Unmodified Potato Starch they all used?

What we've learned over at FTA (freetheanimal.com) from Tatertot, Dr. Grace, and others, is that a variety of fibers need to co-exist in the diet. RS alongside Inulin, FOS, GOS, MOS, etc. And this is because RS2 alone ferments quite rapidly in the caecum (although, interestingly, RS3 from cooked/cooled starchy foods ferment slow and more distally, which is what we want). In other words, it's rapidly fermented. But eating RS2 alongside other fibers helps move the fermentation more distally and helps slows its rate of fermentation down.

After seeing people having some mixed or underwhelming results with Potato Starch (PS), I recommended people start experimenting with other prebiotic fibers like Larch Arabinogalactan (LAG) and Beta Glucans and other polysaccharides — and ideally some of those found in medicinal mushrooms like Turkey Tail, Reishi or chaga.

However, this is where caution needed to be exercised. The feedback I got on those who tried LAG and medicinal mushrooms is that some found them to be too stimulating to the immune system. So, I believe there has been some merit in going very slowly so as not to cause an overwhelming blowback of endotoxins.

What about the probiotics? Did all the ME/CFS patients also take probiotics, or did some patients just use resistant starch alone?

I could be wrong, but I got the sense that some people were hesitant to try too many probiotics. I can't remember though. I believe Prescript Assist was popular, and AOR-Probiotic 3. Many people seemed to have their own favorites though. Not too many comments about probiotics though, if I recall.

@Vegas. Thanks for listing the positive and negative effects you experienced from RS. The near resolution of Raynaud's sounds particularly intriguing and impressive. What dose of RS did you take to achieve these effects (ie, how many heaped teaspoons of RS, and how many times a day)? Did you use Bob's Red MIll Unmodified Potato Starch?

@Hip. I'd like @Vegas to clarify, but I believe most of his benefits are coming from small amounts of Larch Arabinogalactan (LAG). I know he used some PS as well, but the LAG seemed to be the key if I recall. I think he said

@Gestalt was very adventurous, at one point trying 20g a day of LAG (early in the day) in addition to the 3-4tbsp of PS (taken 5 hrs before sleep). I don't even think I could tolerate that much LAG He had very good results if I recall, but he's had some regression due to an experimental stint with NAG/chitin (which we now know might apparently can feed candida).

So... I think LAG is showing some promise. And truth be told, LAG is actually advertised to help CFS patients (one of the reasons I mentioned it in the first place). The makers of LAG claim that it increases NK cells and enhances the immune response while supporting the lymphatic system, and this was believed to be beneficial for ME/CFS patients. (Here's a little layman's cartoon explaining how LAG works, for those who are interested). The amazing thing is that you don't need that much. But, LAG is a bit complicated in that there are different kinds of LAG with different molecular weights offering different kinds of targets.

I believe @Gestalt recommends a low molecular weight LAG (ResistAid or Thorne's Arabinex... they are the same thing) for dealing with immune issues. The larger molecular weight (FiberAid) LAG is supposedly a better LAG for general gut health. But if I recall, @Vegas is using FiberAid so whatever benefit appears to be found in both kinds of LAGs to some degree.

I do recall @Gestalt saying he's tried a number of LAGs and preferred ResistAid for their quality (smells like fresh pine trees) and for its preservation of antioxidants. ResistAid is manufactured by Lonza, and they are just a supplier. If you want ResistAid, you need to find out which LAG products are supplied by ResistAid in your country. Thorne's Arrabinex is ResistAid, but it is $40 for 100g (a normal dose is 2g if I recall). NaturalDoctor ResistAid is the exact same product (again, it's also just ResistAid by Lonza), but sells for $20/100g and is only available in the US — though they seem to be out of stock at the moment. Lonza is a big Swiss company, from what I understand, so ResistAid products should be available worldwide.

FiberAid sells for under $20 for 250g, but the normal dose is supposed to be 4g I believe (though, I think @Vegas uses much less than that).

 

[ariel]

Thanks for your report Vegas. The lessening of raynauds also caught my eye as it is something I suffer from. Right now it isn't even that cold where I am, but several of my fingers are red and swollen with chilblains.

Ripley I was wondering if you know where Eclectic Institute's Larix sits in the spectrum of immune / gut. I am assuming it is closer to the immune end, but not sure if there is a significant difference between it and the ResistAid/Thorne. ??

It is a bit too early for me to report back as I've only been taking the potato starch off and on for about two weeks.
But I have been running into some general mood issues such as irritation, feeling 'off' and more emotionally unstable. Also my face has been puffy - an indication my lymph is congested. I have only been taking about a teaspoon. I've just taken a break for the last few days and about to take a slightly increased dose later today to see what the reaction will be.
I haven't started any of the recommended probiotics yet, definitely putting in an order with iherb today/tomorrow. Have been waiting to see if the AOR Probiotic 3 will be restocked, but it could be a while so will start on the Garden of Life one in the meantime. Will also order the Jarrows L. Plantarum.

 

[adreno]

I think @Ripley has done a pretty good job of summing up the experiences here. It seems to me that this thread has evolved into a more general discussion of prebiotics, as some of the compounds used (LAG for example) isn't technically a resistant starch. Perhaps a new thread could be started about the experiences of prebiotics in ME/CFS.

 

[Sasha]

Just wondering: with these prebiotics and probiotics, is the idea to replicate what would have been in the diet in, say, paleo times or are people using these things medicinally (i.e. in unnaturally high doses)?

 

[Sidereal]

Apologies in advance for the long self-indulgent post ahead.

I've been trialling two prebiotics (RS and GOS) and three probiotics (AOR 3, Prescript Assist and Align) for the last three months. I've written about my initial experiences on this thread previously. My level of functioning was 2 last winter, 3 in the spring. These days I would rate myself at a 4.

Observed benefits:
- Reduction in PEM. When I overexert myself, I no longer have a severe crash with amplification of symptoms in the days/weeks after. I moved house recently and had surprisingly little PEM.

Doing anything physical would have been unthinkable even as recently as February. General rapid fatiguability/muscle weakness on exertion still remain, however, suggesting that they are, at least in my case, underpinned by different pathophysiological mechanisms than PEM and that the concept of "fatigue" is not very useful in trying to unpack what's going on in ME/CFS.

- Major decreases in hypersensitivities. I never had any classic IgE-mediated allergies but I was having constant mast cell activation issues to virtually all foods, supplements, fragrances. I couldn't take any medications apart from antihistamines. The gut protocol has been hugely helpful in that regard. I am able to tolerate foods, supplements and even meds that I previously could not. My quality of life as a result is greatly improved despite still being objectively disabled due to "fatigue" and POTS.

- Significant reduction in brain fog, feeling less "poisoned". Working memory and processing speed remain a major problem.

- Reduced anxiety, obvious effect from the first RS dose.

- Better temperature regulation. During the worst of my (latest) crash in late 2012, I was running at 94-95 degrees F for several months. I thought this would ultimately kill me but it was dismissed as unimportant by medical personnel.

- Very mild improvement in POTS. Less subjective symptoms when upright but still tachy. Disappointing lack of progress on that front so far. Am currently trialling another treatment for this.

Side effects:

- Transient increase in generalised inflammation (i.e., irritability, mood swings, joint pain, sciatica, flu-like achiness/malaise) after each dose. I take very small and infrequent doses of everything due to aforementioned hypersensitivities and to keep symptoms of immunostimulation / herx at a tolerable level.

- Transient worsening of IC after dosing. Foamy urine also.
- Emergence of lymphatic pain which I never really experienced before despite it being a prominent symptom in the Fukuda criteria. In fact, a few times over the last few months of doing this I've developed what seemed like a UTI or sinus infection, sometimes accompanied by a mild temperature, though I suspect this was just my immune system starting to notice existing infections rather than new infections. I had to take NSAIDs at times to deal with this but I stayed away from abx.

- Mild weight gain and increase in hunger and hypoglycaemic symptoms. Very unpleasant.

- Scary myoclonus in the first few weeks but this resolved with phospholipid supplementation.

- I should also mention that RS significantly worsened my IBS-C but the AOR 3 and Prescript Assist cleared this life-long problem within a day.

I attribute, perhaps wrongly, many of my symptom shifts over the last few months to a Th2 ---> Th1 shift. It's hard to explain to people who do not have ME, but even though I feel more inflamed and rubbish in a classic flu-like sense, I feel far less truly ill and fragile overall than I have in a long time.

The way I feel now is similar to how I felt during the early stages of my illness when I was still quite functional compared to how things were in 2012-2013 with total energy crash, being bedridden, unable to cope with even the most minimal stress like eating or having a visitor.

So, to summarise, I am shocked by how effective these treatments have been and also by how terrible the side effects have been at times. I am soon going to begin trialling FiberAid LAG and inulin FOS and report back.

 

[maddietod]

I worked up to 4T potato starch pretty quickly a few months ago, also rotating Prescript Assist, Probiotic-3, and Primal Defense Ultra.

My notes show that I immediately got significantly more energy and excellent mood, which continued for 2 weeks until I got very sick overnight. This virus lasted for 6 weeks, tried to get into my lungs and sinuses, and ended up lodging in somewhere in my ear canals; I've had 2 different kinds of vertigo for over 3 months. I also had to take antibiotics, so that set my whole experiment back.

After a month on 4T of RS I found I was clearing my throat literally all day long, and stopped the starch in case this was an allergic reaction (I have trouble with nightshades). I continued with the probiotics and a somewhat higher than normal amount of fiber in my diet (e.g. I take flax and chia for my omega-3s). I did try plantain starch, but any quantity made me nauseous.

I've recently been taking 2T potato starch, and haven't noticed any changes, good or bad. However, something profound has shifted in this 3-month period. I can now eat potatoes and tomatoes without getting arthritis the next day, and occasional wheat doesn't bother me at all.

I had trialled the RS originally to see if it would improve sleep. It didn't, not at all. But sleep has improved in the last few weeks, from 5 wakings to 2-3, and I'm tempted to attribute it to changes in my gut microbiome. The shift happened after stopping the 4T dose, and before starting the 2T dose, while continuing probiotics and somewhat increased fiber.

Also, I had tried LDN last fall, and had no response at 0.5, but got angry when I tried to increase it. 5 days ago I started again at 0.25 and decided to stay at this dose and see what happens. Immediately and every day since, I've got more energy, more periods of mental clarity, increased sociability, and motivation to do things.

 

[Hip]

After seeing people having some mixed or underwhelming results with Potato Starch (PS), I recommended people start experimenting with other prebiotic fibers like Larch Arabinogalactan (LAG) and Beta Glucans and other polysaccharides — and ideally some of those found in medicinal mushrooms like Turkey Tail, Reishi or chaga.

Thanks @Ripley for that comprehensive summary of the results people have been getting in this thread with prebiotics. The larch arabinogalactan story is very interesting. And thanks for your summary @Sidereal.

I do remember getting some good results with larch tree arabinogalactan when I tried it a few years ago. At that time I found all prebiotics reduced the severity of my generalized anxiety disorder (GAD is a common comorbidity of ME/CFS), and reduced brain fog (write up here). Since then, I have regularly taken a prebiotic (usually inulin 10 grams once daily). However, I remember that larch arabinogalactan had an especially good effect. But I never reordered it after my first jar finished.

So I think I will try larch arabinogalactan again, as the good results people are getting with it in this thread are certainly encouraging. It will be interesting to see larch arabinogalactan reduces my PEM and brain fog, as it has done with other people here. And it will be interesting to see if larch arabinogalactan has any additional benefits over and above the 10 grams of inulin that I am taking.

Swanson FiberAid Larch Arabinogalactan seems to be available at a good price (£11.50 for 250 grams) in the UK: see here and here.

By the way, has as anyone experimented with both once and twice daily dosing, and noticed any difference? Is it better to dose twice daily with prebiotics, or is one big daily dose fine?

 

[Ripley]

Ripley I was wondering if you know where Eclectic Institute's Larix sits in the spectrum of immune / gut. I am assuming it is closer to the immune end, but not sure if there is a significant difference between it and the ResistAid/Thorne. ??

Well... according to this..

Larix™ contains the long branched polysaccharide arabinogalactan (molecular weights of 50,000 to 100,000 composed of galactose and arabinose units in a 6:1 ratio) with a trace of uronic acid, from the Western Larch (Larix occidentalis) tree.

And so... according to this paper, it would be purportedly be lower on the immune scale. It's weird, because Larix claims to be an immune enhancer (maybe they are overselling it). You'll also notice that the dose is 1-3 Tablespoons, which is a lot of LAG (implying low potency for desired results). The lower molecular weight LAGs (ResistAid or ImmunEnhancer), claim to offer more potent immune-enhancing qualities and their recommended dose is only a half-teaspoon!

However, I believe @Vegas has had success with FiberAid, which is higher in its molecular weight than ResistAid. My guess is all these products are on a sliding scale based on their molecular weights (i.e. "polydisparity") and their individual quality controls.

It's probably best to experiment with different brands of LAG and see what works for you. But, don't automatically buy the cheapest one. The molecular weights are all different (each purportedly promoting different effects), the doses are different (skewing the cost effectiveness of seemingly cheaper products), and the potency is different. So, the best approach may be to experiment.

EDIT: That first link probably gave me the wrong molecular weights. I don't have the bottle in front of me, but some say Larix contains MWs of 16,000 to 100,000. If that's true (and I don't know one way or the other), it would have a broad range of MWs. Those numbers probably make more sense.

Furthermore, it seems that the paper describing the effects of the different molecular weights conflicts with this paper, which says that the higher molecular weights stimulate natural killer (NK) cells better.

 

[Ripley]

This is pretty cool actually. In Lonza's ResistAid™ brochure, it says:

Interestingly, several immune “enhancer” herbs contain arabinogalactan, such as Echinacea purpurea, Baptisia tinctoria or Thuja occidentalis and researchers speculate that this is one of the main immune-activating principles in these herbs 9,10.11

@Gemma 's speculation on Echinacea may be worth looking into. It really is a fascinating herb. The small amounts of prebiotics in these herbs have something special in them that are stimulating different immune reactions.

It's staggering when you think about how little LAG it takes to provoke such a response. And since AG is in Echinacea, it's probably worth looking at more closely. It does sound like it has a nice combination of components in one package.

ECHINACEA
This rediscovered American herb has shown efficacy as an important natural immune-system stimulator

Components of the Active Fractions

Analysis of the three most commonly used species of Echinacea has revealed many pharmacologically active compounds present in variable levels in roots and leaves and between species.1

Caffeic acid derivatives: Echinacoside is found in the roots of E. angustifolia and E. pallida but not E. purpurea. Other derivatives include cichoric and chlorogenic acids and cynarin. These constituents may play roles in stimulating phagocytosis.

Polysaccharides: Inulin and other high molecular weight polysaccharides such as heteroxylan, arabinogalactan, and fucogalactoxyloglucans stimulate macrophages and they possess anti-inflammatory activity.

Alkylamides: Echinacein and several isobutylamides are responsible for the local anesthetic effect and some of the anti-inflammatory activity of echinacea.

Essential oil components: These include humulene, echinolone, vanillin, germacrene and borneol. Several have insecticidal activities [LINK]

I highlighted the aspects that show that @Gemma really wasn't off the mark in terms of the context of this thread.

EDIT: Looks like researchers have been investigating it. Likely not a panacea, but might be helpful in conjunction with other fibers.

 

[dmholmes]

Well, I believe some ME/CFS patients felt worse or at least felt better and then worse. I think it was a minority of the people. @dmholmes is the one who comes to mind. He had a rough time after some initial success if I recall. Would love to hear how he's doing and hope he's ok.

Indeed, definitely had worse fatigue while taking PS. Still not sure if it contributed to the return of IBS-C.

A lot of ups and downs going on. Nice periods of complete remission but then relapse. I'm not too keen on trying PS at the moment, but I might try some LAG again soon. My gut is still not happy .

 

[ariel]

Thanks so much for looking into this Ripley. I really appreciate it. And thank you for starting this thread in the first place.

I will start with the Larix as it is easiest right now because of iherb.
ResistAid would be good too, though I can't seem to find it easily. I remember there was some on Amazon, but it has disappeared. Oh well.
I will also try some echinacea, it has been a while.

Well, it has probably been said quite a few times, but gosh I can't believe the effect a little bit of potato starch has on me!
I tried two teaspoons yesterday and eeeerkkkk felt terrible. Anxious, overstimulated, irritated. Horrible!
Learnt my lesson and will reduce.
(Thank goodness for coffee enemas!)

 

[adreno]

@ariel

Resistaid is available on iHerb as Thorne Arabinex.

 

[ariel]

Oh yes, sorry I did see that, but was trying to find the version that is half that price.
Thank you!

 

[adreno]

Oh yes, sorry I did see that, but was trying to find the version that is half that price.
Thank you!

This one is the ImmunEnhancer version (similar to resistaid I believe) and half the price of Thorne:
http://www.amazon.com/Food-Science-..._sbs_bt_1?ie=UTF8&refRID=1T4RS1NQSAY25EE1WCH5

 

[maddietod]

I've been trying to compare prices of products available in the US. It's difficult because some products specify a dose, but most say 1-3 tablespoons, or 6-18 grams, or some such.

The least expensive seems to be the Bricker ResistAid, at $.70 for 2 tablets a day. [Vitamin Shoppe]
Food Science costs about $1.00 a day [Amazon]
Larix $1.15-$3.50. [Vitacost]]
Thorne $1.80-$5.40 [Amazon]
I couldn't find dose information about Natural Doctor, which is not available in the US.
EDIT, add Source Naturals Larch, $0.42 a day [Amazon]

I am not saying these are comparable products in their physiological action. I'm a bit overwhelmed and confused about that. But since I unfortunately bought Larix some months ago (haven't tried it yet), before discovering that it's an expensive and high molecular weight option, I wanted to share this information.

Please check my math before buying any of these based on my information.

 

[jstefl]

I have been taking the Bobs Red Mill PS for more than 6 months now, and I am still not quite sure what to think. In some ways, I am feeling better, but the improvements seem to have slowed down or stopped as of late.

The improvements include a much more tolerant stomach, healthier teeth, slightly less headache pain, less PEM, and maybe a tiny bit more energy. The energy part is difficult to quantify, as it is now summer, and I generally have more energy in the summer.

After several months, I have stopped emitting the foul smelling gas. I can take large quantities of the PS, and pretty much nothing happens. This seems to pretty much mirror my experience with all the different things that I have tried. I feel better at first, but the improvements soon stop.

Since I hit bottom back in 2006, I have made many incremental improvements. In 2006, my BP had dropped to 80/50 and my pulse had slowed to 50. I had lost a lot of weight and slept most of the day. I have tried almost every supplement and treatment that I have heard about since then. Valcyte, LDN, methylation, Valtrex, endless supplements, PS, diet changes, and exercise. Each seems to have made small improvements, and then stopped working.

Since I started the PS, I have tried the larch arabinogalactin, fish oil, EGCg, resveratrol, and the PHD diet.

I am able to tolerate foods that I wasn't able to eat before, and haven't used a Zantac for quite some time now, so that is an improvement.

The LAG is very difficult for me to tolerate. Even small amounts give me a two day headache, so I am taking very tiny doses in an attempt to work my way up. My experience is that if I have difficulty with something, I probably need it. I feel that the LAG is the next step for me. I will stick with it, and attempt to increase my dosage slowly.

The PHD diet does seem to be helping. I am not as diligent with it as I should be, but life keeps getting in my way. I have found that taking breaks from the PS and the probiotics is very helpful. It does seem that I have gone about as far as the PS will take me, and that I need to look into other types of resistant starch.

To summarize, the PS seems to be a step in the right direction, but I have a long way to go.

John

 

[Ripley]

I've been trying to compare prices of products available in the US. It's difficult because some products specify a dose, but most say 1-3 tablespoons, or 6-18 grams, or some such.

The least expensive seems to be the Bricker ResistAid, at $.70 for 2 tablets a day. [Vitamin Shoppe]
Food Science costs about $1.00 a day [Amazon]
Larix $1.15-$3.50. [Vitacost]]
Thorne $1.80-$5.40 [Amazon]
I couldn't find dose information about Natural Doctor, which is not available in the US.

I am not saying these are comparable products in their physiological action. I'm a bit overwhelmed and confused about that. But since I unfortunately bought Larix some months ago (haven't tried it yet), before discovering that it's an expensive and high molecular weight option, I wanted to share this information.

Please check my math before buying any of these based on my information.

Yes... so the larger the dose, the less potent its immune-enhancing benefits are claimed to be. But keep in mind that even the highest molecular weight LAG will still pack a punch. And, truthfully, you might find even the less potent LAGs to be more than powerful enough. I believe @Vegas only takes half the normal dose of FiberAid™ and just only once every two or three days, if I recall — and remarked that it was quite potent. That's fairly astounding when you think about how small that is. In that case, the jar should last a very long time.

So, personally, I wouldn't toss your Larix. It still might be worth trying a pinch of it. Seriously, you don't need much.