Thank you adreno
I´m happy, that you find this interesting, it is from Dr. Grace:
The Resistant Starch Challenge: Is It The Key We've Been Looking For?
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Thank you adreno
I´m happy, that you find this interesting, it is from Dr. Grace:
Gondwanaland
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"A lot of cabbage" can induce hypothyrodism and be counter-productive.
Yeah, as usual this sounds like doctors flailing around telling patients to do random things that make no sense. Also, I don't see why they think a single fecal transplant would reverse a complex metabolic and immune derangement in an ME/CFS gut. This isn't c diff. Surely multiple treatments with possibly lifelong maintenance therapy would be required, along with a prebiotic regime to consolidate the gains. Still, I think it is fascinating that even a single procedure can produce such obvious benefits. Just goes to show you the importance of these bacteria.
adreno
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I have been taking quite a few of the fibers mentioned in this thread for a while now, including inulin, GOS, LAG, NAG, psyllium, acacia and aloe vera mannan. Can't say it's helping anything, though. I seem better able to tolerate the fibers (I especially had problems with inulin and GOS in the beginning), but that's about it.
Some days ago I tried a probiotic which included bifido and some lactobacillus rhamnosus (1 billion). This sent me into a lactate induced crash that lasted for days.
I have been wondering about prebiotics and lactate. It seems a core pathology of ME not to be able to clear lactate. If the prebiotics feed lactobacilli, consequently raising lactate, are we then making things worse for ourselves? I guess what I'm saying is I'm not as optimistic as I used to be, about prebiotics.
Some days ago I tried a probiotic which included bifido and some lactobacillus rhamnosus (1 billion). This sent me into a lactate induced crash that lasted for days.
I have been wondering about prebiotics and lactate. It seems a core pathology of ME not to be able to clear lactate. If the prebiotics feed lactobacilli, consequently raising lactate, are we then making things worse for ourselves? I guess what I'm saying is I'm not as optimistic as I used to be, about prebiotics.
Sorry to hear about your crash, adreno. I've had some improvement in my orthostatic intolerance, first with the PS and lately with the PS plus VSL3 (a lacto/bacillo probiotic). I haven't had any downside except that I get cracking migraines if I try to have too high a dose of probiotics (happened when I tried Prescript Assist too).
I'm an acute-viral-onset ICC/CCC (and now IOM) ME/SEID. I haven't noticed any worsening of muscle soreness or recovery time.
Maybe this is a subsets issue?
This is why we need research like Dr Lipkin's!
I hope, you feel well again, adreno
You could do a stool test for managing lacto overgrowth. I take high dosage of probiotics (lactos, bifidos, soil bacteria, saccharomyces) along with the fibres+RS, and my stool test (I do one every 2 months) does not show to much lactos and bacteries species (they are in the norm since taking RS+fibres, before they were in the minor range), but no bifidos at all, maybe they are all needed für detoxifying candida+metals.
But I think, Dr. Grace has a protocol with only RS3 and fibres. Maybe can also strenghten your gut with fibres+RS alone, and in further time you will have good luck with fermented foods or fibres.
I hope, you feel well again, adreno
You could do a stool test for managing lacto overgrowth. I take high dosage of probiotics (lactos, bifidos, soil bacteria, saccharomyces) along with the fibres+RS, and my stool test (I do one every 2 months) does not show to much lactos and bacteries species (they are in the norm since taking RS+fibres, before they were in the minor range), but no bifidos at all, maybe they are all needed für detoxifying candida+metals.
But I think, Dr. Grace has a protocol with only RS3 and fibres. Maybe can also strenghten your gut with fibres+RS alone, and in further time you will have good luck with fermented foods or fibres.
What's your level of functioning like, @jepps? Bedridden? Housebound? Able to work?
adreno
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I have done a metametrix stool test. It didn't show high lactobacilli (less than average, actually) and no opportunistic bacteria were found. I think it is a mitochrondrial/energy deficit problem, that causes the lactate buildup, not a gut problem per se.
Hope you feel better soon, @adreno.
I've taken most of the fibres mentioned on this thread over the past year. My initial enthusiasm has been tempered considerably as I've come to realise how the conditions in the gut, in my case at least, seem largely impervious to any attempts to change. I'm still not sold on the idea that dysbiosis is the cause rather than a consequence of chronic illness. It could be that an acquired infection such as a persistent enteroviral infection wreaks havoc and causes oxidative stress and autonomic dysfunction which in turn result in SIBO, the destruction of beneficial anaerobes in the gut, and problems with motility, setting up a vicious cycle. Irrespective of the chicken vs. egg dilemma, though, there is no chronic illness without dysbiosis so working on the gut seems of critical importance.
I've had improvements in orthostatic intolerance, brain fog, circadian dysfunction, ability to tolerate/metabolise various foods/supplements/meds, but mostly it's been an improvement in general wellbeing and a better quality of life within the same energy envelope I started off with. I feel better than I did 12 months ago but I still can't produce energy or do anything.
Most prebiotics did nothing or made things worse. I no longer read any blogs on this topic because it seems to me that all the suggested protocols out there are tolerable only for people who are in reasonably good shape to clear lactate. For people with ME/CFS I think most of the suggested supplements are contraindicated. Often you hear people refer to worsening dysbiosis as herx or detox.
On the other hand, some prebiotics - more experimental stuff that's not usually talked about on blogs etc. like XOS and various marine algae - had immediate dramatic effects but the improvements in energy production were accompanied by aggressive immune stimulation. I've had to discontinue every effective prebiotic eventually due to severe joint pain and scary herpes virus reactivations. When I take effective fibres, my immune system wakes up but seems to be spinning its wheels. It starts trying to go after infections again but can't ever seem to win so I get stuck in a perpetual state of viral misery.
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I am able to work, I am self employed, and I can graduate working time. I had symptoms of ME, and working on methylation improved my brain and energy, but increased my signs of fibromyalgia. Since I address the gut, the symptoms improve very very very slowly, but they improve.
I got more and more ill after using antibiotics after stopping breastfeeding the third child (10 years ago, CFS began after a viral infect 5 years ago). I assume, the antibiotics, a stressfull life with children+self employed and pregnancies triggered candida and reactivated persisting infections.
After addressing methylation, 3 weeks afterwards, I had a phase, where I could do sports and hiking with the family, I thought, now I am healthy. This phase lasted 6 weeks, then lyme was mobilized, and everything was as before (no walks any longer). Since this time I´m detoxing infections and toxins. I often asked me, what was the reason for this positive reaction: I assume it was B12 deficiency, and my body was soaking with B12, and functioned. Then the infections began, and since then methylation is needed for detoxing, not for functioning. This short phase 1 1/2 years ago, as I thought to be healthy, told me, that, if the viruses and fungi are in a balance, we are healthy. We must work on the gut, as long as our gut takes.
Best regards, jepps
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I wish you good luck.
Could you find a dosage, which increases the immune system, so that you are a little inflamed, but not to much inflamed?
Maybe you could accompany your therapy with homoepathie? The activated viruses are sometimes severe, maybe you could find a therapeuth or a treatment, who supports you and dampens the immune response.
Sadly, I could not find a dose that gives me energy but a tolerable immune response. For RS, psyllium etc. there is a clear dose-response relationship and if I stay at a reasonable low dose I get very little if any inflammation these days (took a long time to get there but I did). But for these sulfated polysaccharides it was a priming process of sorts. I did really well for the first couple of days or so and then on day three I got slammed with massive symptoms including incipient shingles. I stopped everything and waited for everything to settle down. I restarted many times on tiny doses, I mean so small you couldn't possibly take any less, and now within minutes of taking this stuff I get the same symptoms flooding back.
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I do not know anything, you all know much more than I. The only feedback I have is from the monitor, which shows, what is going on. Since RS+fibres It shows chronic viruses, which get acute, and stooltest shows excreting candida and mold. Sometimes I also have immune responses, they last for a few weeks, then they go away, it correlates, as you write, with the upcoming viruses. But 1 year is not long enough to awaite stopping inflammation, as long as we have mold, candida and viruses and other toxins, we will have immune responses. Maybe we deal better with the viruses, when fungi overgrowth is dealed.
whodathunkit
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I seem to have turned another little corner in the last few days.
About two weeks ago I started "bolus dosing" the potato starch (like 10 tbsp/day in two divided doses). I was not "regular" in my alimentary pattern and figured I might need to "fill up" my distal colon in a hurry. Don't know if I mentioned it already in this thread but my biggest problems with bowel habits came after a longish flirtation with high colonics about 20 years ago. Things changed for the worse after that. They changed more a few years later after an intense bout with Atkins to lose weight, but the high colonics was the starting point. Of course my more or less steady diet of junk food through all these other things I've done, plus all the other crap I put in my body have had a huge effect, too. But since I started with the resistant starch and really going after gut health I've been thinking about a lot of things I've done, with others' observations about their own actions/patterns as a reference point, and realize that the 10-day juice fast and subsequent sessions of high colonics for a couple of years was when things really started to go wrong with my bowel habits and digestion (and thus probably every thing else). For the past 10 years or so I'd had an idea that it was the juice fast that set me wrong, but now I realize it was most likely the colonics.
Anyway, about turning the corner...after bolus dosing the potato starch for couple weeks I've cut way back in the last few days. Still using a couple of tbsp of that per day, but also added in banana flour, arabinex, glucommannan, beta glucan, chitosan, little bit of psyllium powder (about 2 tsp/day) and extra inulin and FOS (which I was also doing with the potato starch). Really, really pleased with the results last night and this morning.
If that's helpful to anyone. I'm not a fan of psyllium in general but a little bit in this mash-up seems to work well.
About two weeks ago I started "bolus dosing" the potato starch (like 10 tbsp/day in two divided doses). I was not "regular" in my alimentary pattern and figured I might need to "fill up" my distal colon in a hurry. Don't know if I mentioned it already in this thread but my biggest problems with bowel habits came after a longish flirtation with high colonics about 20 years ago. Things changed for the worse after that. They changed more a few years later after an intense bout with Atkins to lose weight, but the high colonics was the starting point. Of course my more or less steady diet of junk food through all these other things I've done, plus all the other crap I put in my body have had a huge effect, too. But since I started with the resistant starch and really going after gut health I've been thinking about a lot of things I've done, with others' observations about their own actions/patterns as a reference point, and realize that the 10-day juice fast and subsequent sessions of high colonics for a couple of years was when things really started to go wrong with my bowel habits and digestion (and thus probably every thing else). For the past 10 years or so I'd had an idea that it was the juice fast that set me wrong, but now I realize it was most likely the colonics.
Anyway, about turning the corner...after bolus dosing the potato starch for couple weeks I've cut way back in the last few days. Still using a couple of tbsp of that per day, but also added in banana flour, arabinex, glucommannan, beta glucan, chitosan, little bit of psyllium powder (about 2 tsp/day) and extra inulin and FOS (which I was also doing with the potato starch). Really, really pleased with the results last night and this morning.
If that's helpful to anyone. I'm not a fan of psyllium in general but a little bit in this mash-up seems to work well.
whodathunkit
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Then there's this article about a woman with C. Diff getting fat after getting implanted with feces from her obese daughter:
http://www.iflscience.com/health-an...obese-after-fecal-transplant-overweight-donor
So I guess we need to look at feces donors the way we look at sperm and egg donors: only the smart, healthy, good-looking ones need apply.
http://www.iflscience.com/health-an...obese-after-fecal-transplant-overweight-donor
So I guess we need to look at feces donors the way we look at sperm and egg donors: only the smart, healthy, good-looking ones need apply.
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@Sidereal What if you took antivirals at the same time? Sorry if this is overly simplistic as a question, I'm not good at sciency-logic sometimes.....what if taking antivirals (even non-Rx ones if they work) could maybe allow a person to use prebiotics to slowly build their gut microbiome back up?
Or, wildly optomistically, what if the immune system wake-up from prebiotics actually allows antivirals to work better? I do not have any basis for that idea though.
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Thanks for the suggestion! Yes, I took acyclovir, otherwise I'd be sunk. Trouble is, it gives me vertigo and GI pain. Nothing's ever easy with this damned disease, is it?
Gondwanaland
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@Sidereal take a deep look into L-lysine.
Thanks, I am taking it daily.