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

[Sasha]

Have a look at the ORAC powder you're using. I felt great on the one I was using for about a day or two and then on day three was slammed with immense FM pain and other symptoms. Turns out it was full of various digestive enzymes and Lactobacillus acidophilus, both of which are contraindicated in ME/CFS in my opinion.

I was using Amazing Grass (stopped it recently while trying to cut out things that might be giving me migraines). Actually, now that I reread the label, it's probably the same one that you tried:

http://www.amazinggrass.com/store/green-superfood-berry.html

and yet I did well on it for three months (until the coconut disaster).

Of course, VSL3 is chocka with l. acidophilus and I improved while on that for three months (until this reflux thing).

Very hard to know what's good and what's bad, if things take a long time to go to the bad (and even then, there's no telling which of several things could have been the culprit - might even have been the calcium carbonate tabs).

I must say that even though my OI has improved again, I don't feel the increase in stamina that I did pre-coconut. I wonder if that could be the acidophilus.

What's the issue? Lactic acid?

 

[Sidereal]

and yet I did well on it for three months (until the coconut disaster).

Of course, VSL3 is chocka with l. acidophilus and I improved while on that for three months (until this reflux thing).

Very hard to know what's good and what's bad, if things take a long time to go to the bad (and even then, there's no telling which of several things could have been the culprit - might even have been the calcium carbonate tabs).

I must say that even though my OI has improved again, I don't feel the increase in stamina that I did pre-coconut. I wonder if that could be the acidophilus.

What's the issue? Lactic acid?

I was using the Amazing Grass vanilla chai one.

I wonder why the reaction to coconut. Couldn't handle the lipids in it perhaps? I had a big crash from red palm oil after initial improvement.

Stuff like this is why I'm against radical dietary changes. You introduce a food which seems innocuous but not something your body was used to and bam. The worried well can tinker with paleo diets etc. We need to be super careful about what we eat.

You may never figure out exactly what led to your reflux but in situations like this I find it useful to stop everything and let everything settle down. Then you can start re-introducing stuff one by one starting from whatever seems safest.

VSL3 - lactic acid nightmare supplement.

 

[ariel]

I know, I know, you all think I'm crazy... Ah well... that's ok!
Maybe coffee enemas are pretty much in the same category as homeopathy... some people just think you're nuts for going there.

All I know is that I too was skeptical and then I started doing them at the start of last year because I'd finally figured out that my liver was super not coping. Basically I'd kept reading about them for years and had constantly dismissed it, and I finally decided that only way to know for sure was to simply give it a try.
Like everything I do I had to start off small, and did one with 1 teaspoon of coffee. I felt so good afterwards that it had to be doing something beneficial.
Those who endorse them claim that it helps promote the production of glutathione. And those who promote them also claim that it doesn't disrupt gut flora.

Jepps - maybe it is different with liver cleanses. They are far more intensive and not something I would recommend trying. Maybe they do disrupt gut bacteria.

Personally I don't entirely see how a coffee enema could disrupt gut bacteria that much as the liquid is a fairly small amount and would only sit in the lower colon.
I've never done a colonic, and that totally doesn't seem right (weirdly... coming from me... yes, I know, I know!)

All I can say folks is that I totally couldn't have gone through this without doing them. The inflammation was far too great. If I'd been able to tolerate a greater amount of any of the fibres, then yes, just taking small amounts of probiotics and prebiotics as Jepps is suggesting, and building on that, would have been doable. But my gut, and entire system, was too far gone for that.

The CE provided a degree of relief that is pretty hard to describe. And for me, if it meant that some of the gut bacteria in the lower colon got slightly diminished in the process I didn't entirely care.
For what it's worth, they basically got me through the worst part, and now I can tolerate any of them without wanting to fall into a hole and die. -- bit melodramatic, but kinda true!

 

[ariel]

And for what it's worth, I too gave up on reading Grace Liu's blog a little while ago.
The posts were making no real sense to me and it seemed like she was just fear mongering and linking to studies that weren't really backing up her claims.
I certainly don't think that taking PS is going to kill you, though I do think that it probably isn't such a good idea to just stick to PS.

All just my 2 cents, and just how I've been attempting to manage all this!

 

[Sasha]

I wonder why the reaction to coconut. Couldn't handle the lipids in it perhaps? I had a big crash from red palm oil after initial improvement.

I found a thing on t'internet that said that three different things could have been the issue - sulphites was one, I think. I've never found the post again.

Stuff like this is why I'm against radical dietary changes. You introduce a food which seems innocuous but not something your body was used to and bam. The worried well can tinker with paleo diets etc. We need to be super careful about what we eat.

Good point - it just didn't seem radical, to eat some coconut meat every day but i guess it was. In fact, my unhappy tummy should maybe have told me it was but again, it's this issue of how do you know if a change is good or bad?

VSL3 - lactic acid nightmare supplement.

So it produces loads of lactic acid in the muscles?

VSL3 is supposed to be clinically proven to repopulate the gut with this stuff so by now, it's in there. Bad thing? Or just bad thing to keep supplementing?

 

[Sidereal]

All I can say folks is that I totally couldn't have gone through this without doing them. The inflammation was far too great. If I'd been able to tolerate a greater amount of any of the fibres, then yes, just taking small amounts of probiotics and prebiotics as Jepps is suggesting, and building on that, would have been doable. But my gut, and entire system, was too far gone for that.

The CE provided a degree of relief that is pretty hard to describe. And for me, if it meant that some of the gut bacteria in the lower colon got slightly diminished in the process I didn't entirely care.
For what it's worth, they basically got me through the worst part, and now I can tolerate any of them without wanting to fall into a hole and die. -- bit melodramatic, but kinda true!

I totally understand what you're saying. When you started all this, what was your activity level like on the PR 0-10 scale?

As I said before, my body is a basket case, hardly functioning at all, hypersensitive and reactive to everything. I tend not to post much about my experiences with various things I've tried because it would cause disbelief or anxiety in those who have a milder form of illness. The stuff severe ME patients endure on a daily basis would have normal people running to the ER.

When I started this, I was mostly bedridden and couldn't take even 1/4 tsp of RS or other things without massive symptoms including histamine-mediated reactions. Yes, pushing through allergies, liver pain, kidney pain, other nasty symptoms was something I had to do initially to get anywhere but I don't post about it publicly because I don't for one second wish to encourage anyone else to push through damage. The most common outcome when ME patients push through anything is that they just end up sicker than they started, sometimes permanently so.

That said, I think an honest discussion is preferable to hypocrisy. It's all well and good to talk about moderation and going low & slow but the harsh reality of the situation is that some people with ME will get negative symptoms even from one mg of these substances and for some there is no prebiotic - none - that doesn't produce inflammation. How such people are ever supposed to modify their gut without damage/suffering is beyond me.

 

[Sidereal]

So it produces loads of lactic acid in the muscles?

It does for some of us judging by the many horror stories of LAB supplementation.

VSL3 is supposed to be clinically proven to repopulate the gut with this stuff so by now, it's in there. Bad thing? Or just bad thing to keep supplementing?

Sometimes things that are "clinically proven" in a non-ME/CFS population are poison to us. Just something to keep in mind.

 

[jepps]

For what it's worth, they basically got me through the worst part, and now I can tolerate any of them without wanting to fall into a hole and die. -- bit melodramatic, but kinda true!

@ariel that´s the point. The right treatment in the right time. Best wishes furthermore! jepps

 

[ahmo]

What's the point of building up your gut flora, and then flushing it all out with enemas?

For my part, I was in the process of getting rid of the current gut flora. Now I'm in the process of rebuilding it. I also used protyolytic enzymes during this period, and my body now seems to be far better able to detox on its own.

 

[Gondwanaland]

@Sasha, for what it's worth, I avoid calcium supplements like the plague. That calcium often doesn't go to your bones but ends up in arteries / soft tissue. Dairy gives me phlegm and brain fog and other problems but after years of avoidance I recently developed a sudden massive dairy craving which I interpreted as calcium deficiency. I've started drinking milk again and the craving disappeared.

Have you ever tried chia seeds (pre-soaked to get the mucilage) or maca for their calcium content?
In 2013 my husband was taking several antibiotics with no results. Then I realized it was the milk causing him severe coughing with phlegm. Today he tolerates dairy well - but we prefer A2 casein which has proline instead of histamine.

 

[ariel]

@Sidereal To give some context, when I got very ill in 2008 I could barely walk and just lifting my arms to wash my hair was at times an impossibility. Talking exhausted me, and there were times when I had to get to bed immediately as I know that if I didn't I would just fall over. It is difficult to even think of that time.
When I started the starches I was much better than that. But my life is still very reduced. I am only now starting to naturally feel like going for a walk. I have never had an desire to do something like that til now. The thought of 'going for a walk' was not at all something I welcomed. Though now I am starting to feel the urge once a week/fortnight to go for a small walk in the park nearby.

Pushing the starches was an impossibility. It was only the CEs which got me through it all. It flushed everything out of my system much more quickly. Otherwise I would have had to take 1/4 teaspoon once a week or something and felt awful the whole time. There was no way I was going to do that.

 

[Sasha]

Have you ever tried chia seeds (pre-soaked to get the mucilage) or maca for their calcium content?
In 2013 my husband was taking several antibiotics with no results. Then I realized it was the milk causing him severe coughing with phlegm. Today he tolerates dairy well - but we prefer A2 casein which has proline instead of histamine.

No, I haven't come across those. I've ordered some calcium citrate (which doesn't affect stomach acid).

 

[alicec]

People might be interested in the big changes that have been going on with me.

Over the past several weeks I have been noticing worsening brain fog, sleep disturbance and muscle tension. When the latter became unbearable the penny finally dropped that this might be the result of too much acetylcholine. I stopped the choline bitartrate which until then had been helpful in balancing out my somewhat overactive sympathetic nervous system and the worst of the symptoms settled down, especially sleep disturbance and muscle tension.

But it seems a more widespread process of metabolic change is in train. Brain fog worsened again and I had to stop acetyl carnitine, then methylfolate, methyl and adenosyl B12. Finally I have decided to stop all supplements while I work things out. I always hoped that the gut program would enable me to abandon or reduce the supplements that have helped to get around the various metabolic derangements that characterise this disease but I never imagined it would happen this quickly.

Essentially over the past 4 months I have made only dietary changes, with tiny amounts of aloe vera and psyllium added in the last 2 months (I did try other prebiotics and probiotics like B. infantis early on but couldn't tolerate the side effects). Before the supplement crisis blew up I tried increasing the prebiotics and a few doses of B. infantis and did seem to be more tolerant, but didn't pursue this while I was trying to work out the other problem.

This seemed like a good juncture to see what changes had happened in the gut so I have ordered another uBiome test. As soon as I receive it and do the test I'll return to more experimentation with pre and probiotics, and in the meantime will try to work out which supplements might now be helpful rather than problematic.

Will keep you posted when I have some results.

With best wishes
Alice

 

[Gondwanaland]

People might be interested in the big changes that have been going on with me.

I am really intrigued by the "healing wave" that is benefiting so many members here, including myself.

I have had a strong mood shift on March 6 when I took inositol. It turns out I had some bad side effects that I am not sure that can be blamed on inositol yet and haven't been taking it anymore (took it for 7 days).

After this shift, I noticed I needed to titrate down my SSRI in order to tolerate an increased dose of T3. And today will be the big day that I am going to try to quit the SSRI for good. Also the increased T3 is now being absorbed well.

At the same time (on March 7), I started a regimen with sauerkraut, prebiotics and probiotics and to my astonishment I am not getting inflammation from psyllium anymore I am taking it daily since March 22 and yesterday I increased it from a drop to a smidgen I always pre-soak the psyllium to get the mucilage out of the husks and drink it all, otherwise I get constipation from it.

On March 15 I started a new homeopathy (after Hahnemann's) and on that very day started feeling like myself for the 1st time in YEARS with a sharp, interested and focused mind and a playful mood

On March 22 I started taking Maca (I had tried it before and, like psyllium, reacted badly to it) and in the 1st day taking it I turned music on, pumped up the volume and ENJOYED it - ahhh the 1st day reaction... does any one else have that 1st strong, positive impact that never comes back again? Well, I haven't enjoyed listening to music in like 3 years or more, except in my 1-week MB12 honeymoon one year ago, but I didn't want to listen to music again during this past week

Now for bowel movements... I am still very bloated (I have been eating yogurt for some months now and always get bloated from it) and don't have BM's daily, but at least they are more frequent than before

Other than that, I have been having really interesting dreams for several months now, since my magnesium replenishment back in September, even with all ups and downs i had in this period.

 

[Gondwanaland]

A commonly experienced side effect of RS and other prebiotics is joint pain and reduced joint mobility. I have had some modestly good results recently from Boswellia serrata though I'm still trying to figure out the optimal dose.

http://www.ncbi.nlm.nih.gov/pubmed/19091760

With what specific symptoms has B. serrata helping you? Do you think it also benefits the gut?

 

[whodathunkit]

@Gondwanaland: music (well, sound in general) is A LOT of stimulation for the brain that is not used to it or that is in a fragile state. I got new hearing aids about a month ago and have been hearing a lot of stuff that I'm not used to (my old aids had been gradually failing for at least a year, phasing out more and more sound as time went on), and it's kind of fried my brain not in a good way. But I'm acclimating.

Point being, listening to a bunch of loud music when you're not used to it can put you off for a while. I'm kind of going through that myself. I'm taking a "hearing aid" day today, in fact, since I'm sick again. I'm taking a break from wearing them for a solid 16 hours. Maybe I'll wear them for six hours today instead. And only in the house where I don't have to hear a bunch of engine/traffic noise and crap like that.

I'm interested in some of the healing stuff that seems to be going on around here, too. I have been experiencing a lot of changes lately and not sure what to make of it. Some irregularity of bowels, etc. Today I seem to have crashed with another bad cold, a la the ones since I started @Freddd's protocol. Historically my colds have been "yin" colds, non-productive/dry with lots of stuffiness. But since I started with Freddd my colds have all been yang, with lots of stuff coming out of my head. Phlegm, nasal drip, etc. Thankfully, it doesn't really seem to be in my lungs, just all in my sinuses.

I've added some more methylfolate back into my regimen to see if that helps. Also still going along with the gut stuff, although I've reduced my intake of everything. We'll see, I guess.

All in all I'm still better than I was when I hit PR, and always try to keep that in mind when improvement is not a straight upward trajectory.

 

[Sidereal]

With what specific symptoms has B. serrata helping you? Do you think it also benefits the gut?

As I said, joint pain and stiffness. I would imagine it has a prebiotic effect like all the other herbs. I don't take it all the time, only when joint symptoms hit me. A pretty high dose is required.

 

[jepps]

Thankfully, it doesn't really seem to be in my lungs, just all in my sinuses.

@whodathunkit could this be an activation of sinuses? After 9 months of methylation treatment my chronic sinuses, that I had as child, but by and by didn´t react anymore, get in an active condition. Then I had sinusitis (and also tonsilitis) for a few months. Since this time I can feel my tonsils again, when my immune system reacts to a stimulus. Another effect was, that my lifelong enlarged tonsills reduced to a normal size.
As sinus infections are related to staphylococcus, maybe you could treat it?

 

[whodathunkit]

@jepps, thanks for the suggestion, but it doesn't seem to be an infection...that is, it's not green or any of the bacterial infection indicators I know of.

I do think this is very much related to the gut stuff I've been doing, not necessarily methylation. I'm taking the methylfolate, however, because when I started with Freddd I experienced a lot of GI symptoms. Gut and GI tract is definitely a "weak area" for me. I'm hoping the extra methylfolate will help heal whatever's going on down there as a result of my gut protocol (hope it will help me pass through another level of healing, as Freddd might put it). I don't think it can hurt and since I already have it on hand it's worth a shot.

Generally speaking I've had good results with just letting my symptoms take their natural course when I get sick like this so I'm going to ride it out for a week and see where I am. I'm hoping it will be like it has in the past, where I emerge from the symptoms a little bit better than I was before. If not, I'll reevaluate.

Sure am tired of getting sick every couple few months, though. I took a long weekend from work and it looks like I'm not going to get anything I wanted to do done. My body has basically screwed me out of every vacation, even the very short ones, that I've tried to take in the last 10 or so years. Betting most people here can relate to that.

 

[jepps]

@jepps
I'm hoping it will be like it has in the past, where I emerge from the symptoms a little bit better than I was before. If not, I'll reevaluate.

Maybe you have a little more histamine symptoms than normal because of this ongoing process. Maybe a little more Vitamine C helps? Sinusitis could be a histamine symptome, decreased mood also.