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

[nandixon]

Similar situation here with an iffy autoimmune diagnosis (UCTD) and no true allergies but pseudoallergies to all sorts of things. I don't see any evidence of true autoimmunity in ME/CFS. If anything, it seems like we're stuck with excessive immune tolerance. I recall Cheney commenting how it took him like two decades to see the first case of lupus amongst thousands of ME/CFS patients.

The (possible) success with rituximab could suggest autoimmunity. And this seems to be the current working theory of the Norwegians:

Mella, Fluge and national project coordinator and nurse Kari Sørland think ME is a variant of autoimmune disease, i.e. a disease where the body attacks itself.

- We believe that it is an auto-reactive response, often after an infection, which in one way or another disrupts the body's ability to fine-tune blood flow, says Fluge.

http://forums.phoenixrising.me/inde...amide-and-rituximab-update.36023/#post-568361

 

[Sidereal]

@nandixon, the Fluge/Mella vascular endothelium hypothesis is certainly extremely attractive but I don't see any compelling evidence yet pointing towards autoimmunity in the classic sense of the word. Where is the tissue/organ damage in ME/CFS?

It's great to see these two great physicians / human beings doing work on ME/CFS and I hope they continue to do so but honestly I will be astonished if the rituximab Phase III trial meets its primary endpoint. I suspect it will be end up being useful for a minority of patients. It is already being prescribed off-label by some doctors out there and we haven't exactly had a deluge of success stories here or elsewhere on the internet.

 

[Sidereal]

The (possible) success with rituximab could suggest autoimmunity. And this seems to be the current working theory of the Norwegians:

http://forums.phoenixrising.me/inde...amide-and-rituximab-update.36023/#post-568361

Fluge has patients experiencing lactic acid after holding a book, patients who feel they have ran a marathon after going to the mail box

This is "where it's at", if you ask me.

 

[nandixon]

@nandixon, the Fluge/Mella vascular endothelium hypothesis is certainly extremely attractive but I don't see any compelling evidence yet pointing towards autoimmunity in the classic sense of the word. Where is the tissue/organ damage in ME/CFS?

Just to mention, that in some autoimmune diseases, for example the autoimmune polyglandular syndromes (e.g., APECED), the tissue destruction/damage can occur over many years (decades) before the target organ (thyroid, adrenal, etc.) actually malfunctions.

During the intervening years before that happens, though, the person might experience symptoms indistinguishable from ME/CFS.

This is what may have been the case for @Rebecca2z. See this post here (and that thread):

http://forums.phoenixrising.me/inde...hat-may-have-worked.36240/page-11#post-574370

 

[Sidereal]

Just to mention, that in some autoimmune diseases, for example the autoimmune polyglandular syndromes (e.g., APECED), the tissue destruction/damage can occur over many years (decades) before the target organ (thyroid, adrenal, etc.) actually malfunctions.

During the intervening years before that happens, though, the person might experience symptoms indistinguishable from ME/CFS.

This is what may have been the case for @Rebecca2z. See this post here (and other posts within that thread):
http://forums.phoenixrising.me/inde...hat-may-have-worked.36240/page-11#post-574370

Absolutely. You don't need hormones to be out of range in order to experience the immune-mediated symptoms in the years leading up to gland failure. Lots of people with more mundane problems than Rebecca like autoimmune thyroid disease have symptoms despite their hormones being within normal range. But what about all the people who have had ME/CFS for 30, 40, 50 years with no apparent organ damage/malfunction? What do you think is the target?

 

[adreno]

I hope @awkwardlymodern won't mind me quoting her post from another thread here as it seems pertinent to this Treg discussion. Her experiences with steroids largely mirror mine.

Interesting that even though TGF beta is generally elevated, suppressing it made the patient worse. This would suggest that suppressing Tregs would have a similar negative effect.

Also note that leptin has been found high in ME/CFS, and leptin suppresses Tregs.

I agree that steroids are something to stay away from, if possible.

 

[nandixon]

Absolutely. You don't need hormones to be out of range in order to experience the immune-mediated symptoms in the years leading up to gland failure. Lots of people with more mundane problems than Rebecca like autoimmune thyroid disease have symptoms despite their hormones being within normal range. But what about all the people who have had ME/CFS for 30, 40, 50 years with no apparent organ damage/malfunction? What do you think is the target?

In @Rebecca2z's case, I believe she had the ME/CFS from age 27 to 55, or 28 years before end results of the ongoing autoimmune process (i.e., anti-cytokine autoantibodies) manifested. So perhaps longer development times might be possible as well.

For other people with ME/CFS, though, the autoantibodies might be to the endothelium (as Fluge/Mella may be tending toward), or perhaps the mitochondria, etc. Maybe there are low levels of antibodies to lots of different targets.

I'm not sure the end result of an autoimmune process would necessarily have to be catastrophic. It might cause major chronic dysfunction instead.

 

[Sidereal]

Interesting that even though TGF beta is generally elevated, suppressing it made the patient worse. This would suggest that suppressing Tregs would have a similar negative effect.

Also note that leptin has been found high in ME/CFS, and leptin suppresses Tregs.

I agree that steroids are something to stay away from, if possible.

It is interesting. I personally don't think leptin is driving symptoms in this disease. The best way to dramatically reduce your leptin levels is to lose a lot of weight. A few years ago I slowly lost 30% of my body weight and lowered my leptin levels as well as other inflammatory markers (CRP went from 6 to basically 0, for instance). Although my bloodwork looked amazing compared to before, my ME/CFS symptoms dramatically worsened and I ended up basically at death's door having previously functioned at a much higher level when I was in an objectively much more inflamed state. Many people end up with "adrenal fatigue" and "depression" following successful weight loss. Dieting forums/blogs contain thousands of anecdotes of this sort.

I worry about people talking about using leptin inhibitors etc. I don't know that removing random parts of the immune system is a good idea when we don't understand the disease mechanism. The recent trial in Norway by Fluge/Mella, for example, where they were using a TNF-a antibody was halted after only 4 people were enrolled due to worsening of symptoms in half of them, if I recall correctly.

If this disease has taught me anything it's that an out of range lab value doesn't mean you should jump in and treat it because you don't know if you're interfering with an adaptive mechanism that, while looking bad on paper, is preventing something even worse from happening. T3, cortisol, vitamin D etc. etc. are often low in this illness but when people try to supplement them they sometimes end up sicker.

 

[Gondwanaland]

If this disease has taught me anything it's that an out of range lab value doesn't mean you should jump in and treat it because you don't know if you're interfering with an adaptive mechanism that, while looking bad on paper, is preventing something even worse from happening. T3, cortisol, vitamin D etc. etc. are often low in this illness but when people try to supplement them they sometimes end up sicker.

Yes, I guess I am becoming hypothyroid because of poor methylation. If I increase my T3 through replacement, I need a well-functioning methylation to go along with it. Trying to fix methylation before thyroid hasn't been a good experience for me.

 

[Gondwanaland]

Have you ever seen thickening skin listed as a symptom of hypothyroid?

Found it (there might be others, this is an old buried bookmark):
http://lowthyroiddiet.com/low-thyroid-symptoms.htm

Dry skin, brittle nails, cracked feet
Since an underactive thyroid gland slows many of the body functions down, the body’s largest organ (the skin) is bound to be affected too.

Secretions from the Sebaceous gland are crucial to keep your skin lubricated – a low thyroid problem can leave it itchy and dry.

Low thyroid function can also result in slower blood circulation, resulting in a shortage of fatty acids and nutrients being delivered to your skin cells. This causes the skin to look lifeless and pale, and may also result in cold hands and feet.

Low thyroid sufferers are more likely to get pimples, blackheads, boils, and other skin imperfections.

 

[whodathunkit]

It is interesting. I personally don't think leptin is driving symptoms in this disease. The best way to dramatically reduce your leptin levels is to lose a lot of weight. A few years ago I slowly lost 30% of my body weight and lowered my leptin levels as well as other inflammatory markers (CRP went from 6 to basically 0, for instance). Although my bloodwork looked amazing compared to before, my ME/CFS symptoms dramatically worsened and I ended up basically at death's door having previously functioned at a much higher level when I was in an objectively much more inflamed state. Many people end up with "adrenal fatigue" and "depression" following successful weight loss. Dieting forums/blogs contain thousands of anecdotes of this sort.

Side, care to hazard any guesses as to what's driving this "paradoxical" phenomenon? Past couple of days I have been wondering if my worsening mood is correlated to my recent weight loss. I've also been wondering if it's affecting my adrenal function (again) because I'm starting to get that old familiar crappy feeling I get when my adrenals are doing poorly. And then here you post. LOL

 

[jepps]

Side, care to hazard any guesses as to what's driving this "paradoxical" phenomenon? Past couple of days I have been wondering if my worsening mood is correlated to my recent weight loss. I've also been wondering if it's affecting my adrenal function (again) because I'm starting to get that old familiar crappy feeling I get when my adrenals are doing poorly. And then here you post. LOL

@whodathunkit, do you eat enough carbs?

 

[whodathunkit]

@jepps,that's the thing. I *have* been eating carbs. I haven't been low carb in a very, very long time. I've been eating more starch lately a la the PHD, and that may not be good for me, at least not now.

But I also know that no starch is not good for me, either. After a couple weeks to a month of no starch I get to the point where I want to drive through the front door of a McDonald's, jump over the counter, push all the employees out of the way, and stuff every french fry in the bin into my mouth. Although McDonald's fries are not anywhere near as good as they used to be when I was young and they didn't have all the additives and were fried in beef tallow. Mmmmmm.

The intermittent fasting might also have something to do with this.

BUT...this is a phenomenon (the losing weight and mood/functioning/adrenals going down the toilet) I have encountered in my life many times before. I just didn't realize how common it may be until Side's post.

But this time I'm not going to let it sidetrack me, and in fact am formulating a plan to tweak some things and see how I do.

 

[jepps]

BUT...this is a phenomenon (the losing weight and mood/functioning/adrenals going down the toilet) I have encountered in my life many times before. I just didn't realize how common it may be until Side's post.

But this time I'm not going to let it sidetrack me, and in fact am formulating a plan to tweak some things and see how I do.

Could you imagine, that hormonal turbulences are part of process? It´s hard to differenciate, if symptoms are part of the "healing process" or not.
Do you take anything, you did not take before? If not, can cou imagine, that chronic infections come up? They can easily disturb the hormone system.

 

[whodathunkit]

@jepps..."hormonal turbulence" is probably a HUGE part of it. I love that expression, BTW. I will use it from now on, because it is such a fabulous way to put it.

Most definitely, in the rhythm of my life this is usually not one of the good weeks of the month. Even all other things being optimal, this week I usually have some problems.

Part of it could also be the PleoMuc eyedrops, which I stopped a few days ago. I've been planning to post about that in the Sanum thread but just haven't gotten around to it yet. I don't really know what to make of it, except maybe between the eyedrops and the enzymes I've been taking there's been some sort of die-off.

But the other thing is, the phenomenon @Sidereal was talking about due to weight loss is also something that may be coming into play. It's happened me in the past. I'm just exploring all options.

The one thing I'm sure of is that something is not quite right, even taking into account the fact that nothing is ever quite right. It's more "not right" than normal. So I'm going to tweak, tweak, tweak, and see WTH I can do about it (if anything).

 

[melamine]

The one thing I'm sure of is that something is not quite right, even taking into account the fact that nothing is ever quite right. It's more "not right" than normal.

This is something I was thinking of posting about yesterday - the "not right" that's not my normal not right. I was experiencing a strange mental effect that I feel certain had something to do with the RS and other fibers that I had started using a couple days before + the relative mix and kinds of probiotics I'm using at this time + whatever bugs were left over, good, bad, and out of balance, following a course of Clindamycin and previous courses of amoxicillin.

I was having a hard time categorizing it beyond uncomfortable, or putting it into words other than it felt strangely not like any phase of "my normal", like essential connections were missing, things out of place and out of balance.
There was a sensation of chronically leaking sub-consciousness that's continuing to a lesser degree today, and a persisting estranged, distracted feeling. My nervous system was overly activated and affecting my muscle stability to some degree, and my brain was more "retarded."

It was the neurotransmitter-type brain symptoms that were not my "normal" bad, although not totally alien to me either. I didn't stop or especially change any of my routine because of this, which varies somewhat from day to day anyway.

 

[Sidereal]

@whodathunkit, it's not a paradox, sadly, when you consider that overweight is a disease where the body, for reasons currently unknown, defends an elevated fat mass setpoint and responds to reduction in caloric intake (i.e. semi-starvation) the same way as a lean person responds: with a reduction in energy expenditure, rise in hunger and stress hormones and an increase in foot salience/reward at the neurological level fuelling the drive to replenish the lost fat stores. These effects are mediated by crashing leptin and thyroid hormone levels and rise in cortisol + catecholamines. Maintaining a weight reduced state of more than -10% of the starting weight, give or take, is essentially impossible according to the published research unless you are willing to live in a state of permanent metabolic starvation/conservation, stressed and depressed:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3673773/

Anyone who is sane caves in and dives face down into pizza and potato chips and regains the weight promptly, normalising their endocrine status. The ones who successfully maintain long-term, you can observe how obsessional and chronically dysphoric they are. Bariatric surgery patients can't regain weight comfortably due to GI tract surgical mutilation so these victims of the weight loss industry tend to fare the worst with high levels of mental illness and suicide due to starvation and nutritional deprivation and the resulting neuroendocrine derangements. This knowledge is suppressed and has not trickled down to the average doctor in clinical practice because of the economic impact of the obesity epidemic so the government / AMA party line is that everyone should lose weight and how great and healthy that is when the reality is the opposite. Truth is, ~5% weight loss brings about maximal benefits in terms of resolving hypertension, type 2 DM and dyslipidemia. Anything beyond that is actually damaging.

It stands to reason that altering the microbiome could help matters, I don't know. I haven't dialled in on the right combo yet for that to happen. Naltrexone certainly helps but not everyone responds the same way. RS made me gain weight.

 

[whodathunkit]

@melamine: yep. That's kind of what I've been feeling.

And complicating it all is the fact that the new "not right" might actually be a transition stage to something being better. Disrupting the new not right could for some of us be counter-productive. LOL

 

[melamine]

And complicating it all is the fact that the new "not right" might actually be a transition stage to something being better. Disrupting the new not right could for some of us be counter-productive. LOL

At the very least I was uncertain what it meant, so I just continued more or less, tolerated the discomfort, regretted having sounded like an especially boorish idiot on the phone yesterday (one out of two times, not bad), and although my "normal" exhaustion symptoms remain, the worst and strangest one has mostly resolved by itself today.

 

[jepps]

@melamine: yep. That's kind of what I've been feeling.

And complicating it all is the fact that the new "not right" might actually be a transition stage to something being better. Disrupting the new not right could for some of us be counter-productive. LOL

@melamine @whodathunkit these hormonal symptoms, that you describe, are the symptoms, that I have at times. I wrote, that I do bioenergetic testing. Each time, when I have better times, and after a while of doing better I realize this kind of brain symptoms, then the testing shows old infections, mostly in combination with heavy metals, that the better immunity mobilizes. Healing process is an up and down, things get better, and immunity takes better competence to confront with old loads.

Both heavy metals and chronic infections, which get acute, influence the HPA-axis for several weeks. The worst thing in such phases is taking supplements: "did I take this supplement or did I not????

This could be a possibility, in this case you should consider taking something for treating infections, and taking binders for the toxins.