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

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Ripley, Dec 11, 2013.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I had what I'd call lymph congestion--sort of like the flu, headachy, heavy feeling. I've been doing a lot of detox baths, clay, psyllium....

    It took a couple of weeks (at least--should be keeping a diary!) for the lymph symptoms to resolve. But they pretty much have except for a day here and there.

    Hope you get through this froufox and @anne_likes_red.

    Sushi
    anne_likes_red, froufox and Asklipia like this.
  2. Asklipia

    Asklipia Senior Member

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    @froufox : Yes we had lymphatic problems. My husband's eczema on the calves flares up and I got dozens of pimples on the ways of the lymphatic system in the legs, inside and outside.
    I had the same thing but in the arms and chest when I was doing my exercise to clear the head last year.
    Pimples that take ages to heal and are very itchy.

    From my experience last year with the same pimples and burning in the top half of the body, I would say that it takes about two months to resolve, then no more of this.
    We have done just a month of PS, so it is early times yet.

    What we do to mitigate this : swimming in cold water (@anne_likes_red :)) and vaping turmeric, which is very soothing apart from killing a few bugs in the lymph and in the sinuses (which includes behind the eyes if you move the vapour around).

    Apart from this, I have another observation. @Vegas spoke of PEM. Since we do not have this anymore I did not really consider it. But what is happening is that we both do things FASTER than before. I suppose it is related.

    Be well!
    Asklipia :hug:
    froufox likes this.
  3. Sidereal

    Sidereal Senior Member

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    I can't comment on the PEM aspect since I haven't yet taken enough RS to be able to notice a difference. I am currently mostly housebound where even a 10 minute walk will leave me with PEM so for now I am going to keep staying away from all exertion and well below my activity ceiling. Aggressive rest therapy, pacing, antihistamines and diet have been the only truly effective things for me so far.

    That said, I'd like to chime in on the OI aspect of things after seeing @Sushi 's comments. I am currently in a major crash since the summer of 2012 when I developed severe hyperadrenergic OI/POTS with MCAD, very much as described in this Vanderbilt paper. I have had OI since 2001 but for most of these years it was mild, with spells of moderate. I've had ME longer than that, since mid-1990s, but it didn't become impairing (i.e. I was able to get through the day unless I had to exercise) until I developed OI and became housebound for the first time.

    In 2013, the OI/POTS became very severe leaving me bedridden for many months. When I say severe I mean unable to even sit. Pulse 140-160 when standing. BP low when sitting or supine but when upright the diastolic would rise and the pulse pressure would narrow leaving me with a BP of 120/100. I had polyuria, hypovolemia and frequent spells of hypokalemia. I diagnosed myself and found a neurologist who claims to specialise in this. The advice was to take a beta blocker and exercise my way out of it. Needless to say, I couldn't exercise since I was dying.

    These symptoms are currently nowhere near as bad thanks to diphenhydramine. In the last couple of weeks, I have begun taking a quarter of a teaspoon of RS every 3-4 days (taking no more than one teaspoon in total so far) and even at this minuscule dose it is having a powerful effect. After the first dose my hands were covered in these and a Herx reaction followed with flu-like malaise, burning lymphatic pain and rheumatic pain in knees and elbows. After repeated doses the histamine reaction stopped, but the Herx continues for a day or two after each dose. And yet, there is an improvement in my underlying energy levels and brain fog. I go through spells of a couple of hours here and there where, for the first time in a long time, I can think clearly and I feel energetic and optimistic. I am shocked by this.

    There has been no objective change in my POTS in terms of BP and heart rate from the RS yet (as I said, I've only taken a teaspoon in total so far), but I am subjectively less symptomatic when in the upright position. I feel less dizzy, weak and confused when standing and I can stand for longer. My pulse is still around 120 upright. In addition, I am able to spend my entire days sitting (rather than having to lie down every so often due to OI) since taking RS. I think this is reducing brain hypoperfusion.

    I don't know what it is about this treatment. I can only offer my INFJ ramblings about feelings on this matter, but like you, @Vegas , one day last week I suddenly felt a glimmer of hope and optimism (normally foreign concepts to me given the wretched and unrelenting nature of this disease) for the first time in years. This is doing something very profound to the gut and therefore everything else in the body and I feel it is addressing the core pathophysiology of this disease. I can't say that about most other ideas that have come and gone over the years. I wouldn't have believed that potato starch could do this had I not tried it myself. I honestly would have dismissed it as total quackery if not for the thoughtful contributions of the people on this thread and reading the literature. I should add that I was a depression researcher before being struck down with this so I was familiar with Maes's ideas on leaky gut and LPS, but somehow I never made the leap that this was relevant to my illness (and a host of other illnesses) until I developed overt GI symptoms late in my illness and, more recently, an autoimmune connective tissue disorder.

    Thanks @Ripley for bringing this to the attention of the ME community. @Vegas , if you had any additional thoughts on the link between gut dysbiosis and OI, I'm sure lots of people here would appreciate hearing them.
    Hanna, snowathlete, Sushi and 4 others like this.
  4. Asklipia

    Asklipia Senior Member

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    I am very sorry you are suffering from all this@Sidereal and I sincerely hope you find a way out of it soon.
    The last of my OI resolved completely last year after doing for a few months a yoga exercise (I am not suggesting you do this...) which eventually "emptied" my head of extra lymph, restoring proper lymph distribution there.
    I could feel the lymph leaving the head area and burning near the jugulars. Coming out in burns between the teeth and under the ears.

    Which made me think that this OI was most probably not primarily due to hypoperfusion as they say, but was a consequence of pressure inside the head in the wrong places, pressure due to stuck lymph.
    I think the PS is doing something to the quality of lymph, and at the same time, or subsequently, to lymph distribution.

    Fixing the lymph distribution in the head resolved all my symptoms.
    I found out ways to redirect the lymph to avoid the head, by Bains Dérivatifs or this exercise. If I do them every day, I am fully cured. But if I stop for a week, I feel the disease creeping back. Until we find the cause of this lymphatic problem, there is no "cure". If RS turns out to be the key, and that what we suffer from is just a gut bacteria imbalance which can be smoothed out with a couple of PS teaspoons, it will be much easier to take care of this body!:) I can afford the trouble of taking a couple of tsp of PS a week, no problem!

    As I write this, I realize the enormity of what I just expressed.
    Am I this incredibly hopeful person? Am I not mad to cherish such hopes?
    Am I allowed to live a fruitful life after all?
    Am I part of a cutting-edge solution to help reduce suffering for humanity?

    I think it is a good idea to allow myself this hope, if only for its placebo effect!

    I might even find time to learn more music!
    Bliss.....:balloons::cool::balloons:
    Be well,
    Asklipia
    froufox, Sasha and Sidereal like this.
  5. Sidereal

    Sidereal Senior Member

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    I'm very glad to hear you found something that works for you, Asklipia, and thanks for the tip. :thumbsup:

    My thoughts exactly. I felt ridiculous writing that essay but I figure if it helps even one person out there, it's worth it.
    Sasha, anne_likes_red and Asklipia like this.
  6. Asklipia

    Asklipia Senior Member

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    I just wanted to add that I believe
    - that Vitamin K2 affects the quality of the lymph
    - that the balance of the B vitamins regulates lymph distribution.
    Which would be why RS has such a tremendous effect on both. It must be encouraging the bacteria that produce those.
    That the B vitamins affect lymph distribution is something I feel in my body and moving lymph around in specific channels is what yoga is all about. For example, B1 makes my lymph flow on the right sympathetic side, B2 makes it flow on the left parasympathetic side.
    All of this I say by experience in my body, I am sure someone here is more qualified to find scientific justifications.
    Lots of good wishes!
  7. froufox

    froufox Senior Member

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    Thank you Anne, Sushi and Asklipia for sharing your experiences, I really appreciate your feedback :) It is really reassuring to know that you've all had lymph issues, though I am sorry that it has been so rough too, esp with you Anne (I'm sorry to hear about the burning!). I am feeling a bit better today thankfully, my brain was so foggy and congested that I wasnt able to write in more detail in my previous post. I do still have some lymphatic congestion/swelling all over my body but it has subsided a bit and the good news is my head is a lot clearer, relatively speaking, and I am definitely feeling stronger physically. Ive just been out to my doctors and the muscles in my legs felt a lot stronger whilst I was walking...my vision is clearer too and I'm more aware of what is going on around me (normally i'm not very "with it" to notice much). So it does feel to me now that it has been doing something significant as you say Anne. Really feel like i stirred up a hornets nest though!

    I was managing to do some lymph work but only on some days as I was really exhausted & inflamed at times. Its funny you mention the Bains Derivatif Asklipia...i havent done that for ages, but several months back I started splashing my underarms with cold water when I get washed and i noticed that it gets the lymph moving a little, i guess in a similar way to BD, as it makes me cough up mucus. Also been doing epsom salt baths, a bit of juicing and enemas, I didnt have the wherewithal to do a lot though and i think it was just a case of waiting for things to settle down. Ive been quite constipated too, despite the mag baths, extra fibre, and a colon cleanser! So that didnt help matters.

    Anne I remember trying larch arabinogalactan a few yrs back and feeling worse on it (maybe for the same reason?) so i stopped taking it, but I will be interested to hear how you get on with it and if you feel it helps.

    I have just been to my GPs and he wants to do some blood tests just to check things out, as I was concerned about the lymph swelling/congestion...its not something I have ever experienced in all the time Ive had ME. I very rarely go to see my GP and we get used to our usual pattern of symptoms dont we but ive been ruffled by this latest "adventure" o_O
  8. Asklipia

    Asklipia Senior Member

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    :thumbsup:

    Take it easy Frou! If this is going to work, it can only be very slowly. :hug:
    Take care.
    froufox likes this.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    After reading others' experiences I'm seeing that I have (so far!) gotten off lightly with reactions like lymph congestion etc. This might be because I've been taking some fairly aggressive treatment for a few years which should have reduced LPS and pathogens--so maybe I have a lower toxic load and less dysbiosis to deal with now.

    It seems like I have gone through the same reactions as others but "more mildly." With all the connections between the gut and the immune system and the neurotransmitters system, I could guess, in a very layman's way :cool:, why RS could be helping. It could also be a significant factor for PEM because RS is supposed to help convert lactic acid to butyrate--and we are notoriously high in lactic acid and low in butyrate. Lactic acid build-up likely contributes to PEM.

    So, for all most of us, this seems to be another potent "low and slow" approach with a lot of potential for healing an area that is likely the source of many of our symptoms.

    Since I am now doing well now with 1 teaspoon a day, I am wondering if increasing the dose would give further benefits, though, if so, it might mean another unpleasant round of reactions.

    Thoughts from the more scientific types on this thread?

    Sushi
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    All makes sense to me. Although I don't have in-depth knowledge about the butyric acid connection (no time to read the longer posts) I know of no reason to doubt it.

    I too favour the slow and more-natural approach to treatment. It gives the body time to adjust gradually rather than giving it nasty shocks!
  11. froufox

    froufox Senior Member

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    I guess we are all different, and this can depend on so many different factors like severity of illness, length of time being ill, ability to care for ourselves etc. I was severely ill in the past, having lost tons of weight at one point and after that I was sensitive to everything. Ive also done a LOT of aggressive treatments over the years but I was unable to tolerate most of them eg GcMAF made my inflammation worse, whereas I remember you improved on GcMAF Sushi? My sCD14 was high, although not as high as others.

    The only thing that helped me significantly the last few yrs was taking antibiotics...they got me up and being able to study part time, which I could never have even contemplated before then.. I was still doing okish until Christmas, then relapsed around late Jan/Feb, I'm assuming due to a few factors... my vit D had dropped over winter (live in the UK!) whereas I had just got it up to within a decent range at the end of last summer. I'd stopped taking antibiotics so maybe the infections (lyme etc) started to rear their ugly heads again. I had also gone off my diet over Xmas and drank more alcohol than I should have (I was able to tolerate though, but it clearly would have compromised my liver & gut function). It was a few weeks after that I started the resistant starch....so maybe not surprising that i have done poorly with it.

    I used to take butyric acid...im sure it must have helped in some ways but i stopped taking it a few yrs ago. The last 2 stool analyses that i had done, the only issue that showed up with one of them was low sIgA, all the short chain fatty acids etc were fine, but that was before taking abx.

    I hope you continue to improve Sushi, personally I would exercise caution! :nervous::D
    Last edited: Mar 26, 2014
  12. madietodd

    madietodd Senior Member

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    I'm on antibiotics for 10 days for a sinus infection that took over really fast. I'm taking enough probiotics to avoid diarrhea, but nothing special since it's all getting killed off anyway. I'm thinking of it as a placeholder.

    Does anyone have experience repopulating the gut? I have the 3 probiotics recommended on this thread, and the vitacost one I'm using atm. I'm taking the RS, but I don't directly supplement with fiber.
  13. froufox

    froufox Senior Member

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    what about kefir on top of the probiotics that you have Madietodd?
    madietodd likes this.
  14. madietodd

    madietodd Senior Member

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    Yes, thanks - I am alternating kefir and yogurt, taking them with the potato starch.
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  15. Vegas

    Vegas Senior Member

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    Thanks for sharing your experiences. I am very happy that some positive changes are seemingly taking place. Pay attention to your "water" balance, perhaps more concentrated urine, or more or less frequency. I don't anticipate problems, I'm simply suggesting you may notice this re-balancing.

    Sounds like you are going to have a bumpy ride, but I think it will be worth it. The joint pain does seem to be common, but I don't think will represent a long-term problem. I remember some of these same aches in the knees and elbows from back in the day when I had FM, nearly 20 years ago. It wasn't really joint pain, just trigger points that happened to be located at the elbows and knees. In recent times, this only surfaced after starting fermented foods, but this now seems to be going away.

    Must be nice to have better perfusion, it has to be impossible to function that way. I think having a optimal cardiovascular fitness and circulation may have spared me from many of these symptoms. It seems strange after having not exercised to any significant degree in 5 years, but my lungs and heart still feel pretty strong. Interestingly, my blood pressure has dropped since starting the resistant starch, and is considerably lower than it was when I was extremely cardiovascularly fit, as is my pulse. My dependence on catecholamines is clearly declining.

    Depression researcher? That is interesting to me, we will have to chat about this. I pretty convincingly found that I could induce depressive symptoms of two distinct varieties. The first type which I think was mediated by LPS, which interferes with tryptophan metabolism, symptomatically seems to range from moodiness and agitation to a very flat affect with general anhedonia and profound apathy at the extreme end of this continuum. The other, more severe variety of depression was induced by folinic acid, which I think actually interfered with de novo thymidine synthesis and the high energy phosphate pool. I don't think this would manifest itself as severely unless amino acid metabolism wasn't also inhibited. That was some real nasty stuff and was much more in the line what it must feel like to be tortured. I honestly can't describe it, it was so horrible.

    I don't have time to write about OI tonight, so I will have to do this after I get back from business travel. Your story about the neurologist is so typical, though. I recently had a "disagreement" with an M.D. who is supposed to be "world class" dysautonomia expert. He obviously didn't want to hear about any unconventional ideas, which he said "were wrong on many levels." He did have to bite his tongue when I pointed out that the patient had three separate indicators of anemia, which he had never specifically evaluated with the appropriate tests. He said he would "think about doing those tests." Imagine that, a patient with dysautonomia with B12 and folate deficiencies, and GIT pathology. In the meantime, they keep re-fitting this poor lady with a port-o-cath not even telling her that they are eventually going to run out of veins to place this.

    Best wishes to you for more improvement.
    Last edited: Mar 25, 2014
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  16. Vegas

    Vegas Senior Member

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    I don't know if you are speaking to me, but I'm not shy about offering an opinion, which happens to be one of my personality flaws.

    Regarding your comment about RS help participate in the lactate butyrate conversion, I think the more important thing that is happening is not the direct bacterial conversion of lactate to butyrate, but the provision of RS, which nurtures organisms that don't utilize lactate. The power of RS lies in the selectivity of substrate accessibility, at least I think this is part of it.

    The primary metabolic pathway for bacterial butyrate synthesis is via the acetate Co-A transferase pathway. This uses acetate, NOT LACTATE. It also uses acyl-co-a. You won't remember this, nor will you likely care, but that enzyme I said, which works in the body to neutralize LPS is AOAH, acyloxyacyl hydroxylase, lots of "acyls" in there. Anyway, some species can utilize lactate very efficiently, and these will gain traction in an ecosystem where there is excess lactate. I'm seeing this pretty consistently, there are organisms that are filling roles based upon the nutrients available, including some things that are especially toxic to humans. You may not want these organisms, but they may be providing some benefits. I am also seeing an abudance of methylglyoxal utilizing species, which fits in perfectly with what I think is happening with the pyruvate/lactate metabolism and glycolysis. Sorry, I'm thinking out loud again

    Getting back to lactate utilizing butyrate synthesizers. @snowathlete, for example, has a very high number of one such species that utilizes lactate to produce butyrate (An Anaerostipes organism). The kinds of butyrate synthesizers we want CAN'T UTILIZE LACTATE, like Roseburia Intestinalis, the bacterium that flourishes on RS and Faecalibacterium prausnitzii, the organism deficient in Crohn's Disease, and dependent on certain Bifidobacterial and other commensal strains. The combination of acetate producing Bifidobacterial strains and butyrate and propionate synthesizing organisms that use acetate instead of lactate is what we want, I think.

    Come to speak of it, you know another category of organisms that is good at utilizing lactate, sulfate reducing bacteria. They are obviously very opportunistic, and the hydrogen sulfide they produce may actually help avert more dire consequences by mitigating the inflammatory response which ensues after cell wall lysis and endotoxin exposure to the host.

    Your question about increasing the dosage: based upon your response thus far, I would say you are probably going to be o.k. increasing the amount you are taking. I'm not seeing that you are having any of the more severe symptoms that would necessitate a more conservative approach.
    Sidereal, Gestalt, froufox and 2 others like this.
  17. snowathlete

    snowathlete

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    What I'm wondering at the moment is whether it's possible to ever get such species back once they've been wiped out either through the pathology of illness or antibiotics or whatever...
    My Faecalibacterium prausnitzii is very low and perhaps is now gone entirely following ten months of abx. I can probably fix the bifidobacteria through supplementing and I can take RS and other prebiotics to support them and other friendly bacteria, but is making the environment correct enough to get Faecalibacterium to come back, or will no amount of RS be enough? Does zero on a test really mean zero - as in, gone entirely and for good - or is there some small colony alive hanging on in your intestines somewhere that can then be nurtured back to healthy numbers?
    merylg likes this.
  18. thomas_3000

    thomas_3000

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    Jeez louise, I stopped checking this thread for a few days and a torrent of highly interesting and informative posts comes along. Wow.

    I have gone through ups and downs the last few weeks, but right now I'm reaching empyrean heights with regards to my IBS and (what I suppose to now be also some form of ME/CFS). If all continues to be sunshine I'll write about what I did in the future. I still have some brain fog, but my digestion is really good now. Sleep is better, I think (but the oft usage of Tetrahydrocannabinol could be a confounding factor). I have some other nagging issues that I want to focus on for the coming months (dandruff, sinusitis, some iffy skin on my cheek, and some red spots on my triceps that I've had since puberty). I'm hoping these issues will clear up in the next few months now that *knock on wood* my digestion seems to be back to O.G.-level.

    The photosensitivity and P.E.M. were unknown to me, but I definitively have had those. I always wondered why exercise would leave me so physically and emotionally drained. However, the P.E.M. seems largely gone now. I did some really heavy weightlifting today (deadlifts) and I feel pretty fine now. In the past, I wouldn't have been able to get out of bed for the rest of the day.
  19. finalgates

    finalgates

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    very interesting question.
    snowathlete likes this.
  20. adreno

    adreno 3% neanderthal

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    The flora in the intestines differ from the flora in fecal matter, so it's possible you still have some bacteria left. I would give it a try.
    snowathlete likes this.

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