December 25, 2014 at 11:13 pm #17529
Hello CP, and thanks as always for your detailed reply. Really means a lot to me? You’re certainly an encyclopedia of knowledge, and I thought I had that cornered. Ha!
(I have SO many things bookmarked it’s insane, literally. I know my family thinks I’m nuts.)
Here’s a couple of links btw to fructose and collagen issues:
Anyway, you probably don’t remember me, but you were also kind enough to reply in detail on my thread waaaay back in February on ‘fat intolerance’:
The reason I responded to this topic was because not only have my triglyercides, good and bad cholesterol been showing up w/bad numbers, but my blood pressure went way up again (after coming down in 2012-2013) and my hbA1C is one point away from pre-diabetes or metabolic syndrome. And a week ago or so, I found info saying it’s the fructose part of ‘sugars’ that causes these problems, which then lead to info on fructose malabsorption, which then had me thinking that perhaps that may be why not only can I not increase the fat I need, but also why my digestion (not to mention circulation) is SO poor. Really poorly formed stools, even with betaine HCL and plant-based enzymes.
This, on top of a long-standing ME/CFS diagnosis, “venous insufficiency” in my legs (which I figured out after deciphering a rash on my leg was “stasis dermatitis”, which a doctor finally confirmed, six years after it started).
And I guess the other reason I was/am concerned about fructose, is the fact that my eyes have been giving me problems since May — either dry, or watery, or sore/red/scratchy — and most recently, dramatically increased sensitivity to light. I’ve had ‘night blindness’ to a decent degree for years and years (and should’ve been supplementing with “A” or CLO and zinc, etc, and not just “D” — or eating liver, etc), but this is getting really scary. Anyway, I saw connections to eye problems and pre-diabetes/metabolic syndrome and fructose, so thought that might be a part of the puzzle.
A month ago it was bad, and I couldn’t be on the computer for long, but that was mainly due to dryness/watery/eye “fatigue”, whereas now I have to turn the monitor light waaaaay down, and see spots after looking for maybe a second or two at bright reflections in (for example) the kitchen sink. I would say it was 2-3 weeks ago when I noticed that if I turned on the bathroom light when getting up before dawn do my thing, when I turned it off, I was basically blind for 15-30 seconds until my eyes adjusted.
The other thing that happened about 2 1/2 months ago, is I stopped fish oil, and also riboflavin (which I wasn’t taking much of at all, but was taking probably 3-4 times a week). I stopped the B2 after reading that it could worsen photophobia, but think that was a mistake.
I started a little last night, and then again this morning and with lunch. Also had one 10,000iu vitamin A, and one DHA, and also rubbed a little on my eyelids. And of course this is not even 24 hours yet, but just now did the ‘staring at (or near) a strong reflected light) and it didn’t seem as bad. I definitely could not reply to you this morning, not only because mornings are bad (I think due to no/low glycogen, due to STILL not enough calories), but also, because my eyes were extremely, extremely sensitive this morning.
I would guzzle the CLO or whatever, but then I get that RLS-ish crap in my legs, like I do if I try to increase other fats. BUT — this morning, had almost no fat (except 1% milk) and about an hour into my nap afterwards, my leg started giving me problems. So maybe it’s not the fat, or it’s more than one thing.
But over the last six-eight months, I have at times increased my sugar (even nasty Power-Gel type stuff as it would give me “energy”), and for years have been eating dried fruits (as I was sugar phobic, thanks to the ‘natural health’ hype), and so that is what made me wonder about fructose and/sugars contributing to my overall decline — which is so frustrating, as acutely, they help me stand and walk, although I use a wheelchair or grocery store electric carts 80% of the time.
Anyway, very interesting about the copper connection. I have been reconsidering copper again (after being told I had ‘hidden copper toxicity’ by a hair mineral analysis, despite the copper being low on the test back in 2011). The woman said anyone who has CFS longer than 10 years is copper toxic. She said this was due to a diet of too many vegetables and not enough meat.
I think she’s wrong now, but back then I was taking a copper only supp from time to time, and did seem to note greatly increased anxiety which I thought was connected, but of course not sure. I was able to raise $ to get a SpectraCell test that indeed showed my copper was high and zinc was the only mineral that was low. I did take some zinc from time to time, but always felt it was making my feet icy cold and tingly — but that may have been because I was drinking too much water w/supps. I don’t know. Anyway, just in the last few days I’ve taken a balanced zinc/copper supp, and my anxiety isn’t dramatically worse. It’s not better, but not worse either.
Aren’t you glad you responded?
I hope you and your roommate are doing a LOT better than I am, and had a decent holiday. Thanks again for your reply. :)
(My eyes are suddenly ready to quit. Can’t believe I wrote that much, but I’m sure you’re grateful it’s over for now.)
January 1, 2015 at 6:17 pm #17533
- This reply was modified 8 years, 11 months ago by DannyJ.
Yes, I definitely remember our conversations earlier this year. In fact, it was some of your comments that got me to look more into thiamine, and I’ve read a lot of goodies since then!
But I’m definitely sorry to hear that things are not better for you!
Here are some thoughts. Stasis dermatitis is common in diabetics (well, relatively common), and the tingling sensation you describe in your legs is a documented feature of the poor venous flow. However, I’m not sure how or why fat would be related to this, outside of the possibility that the dietary fat is increasing the absorbed endotoxins from the GI tract (which it does, but usually isn’t a problem), and that this is exacerbating your inflammatory reaction in your legs.
Do you ever eat egg yolks? Or liver? Phospholipids (which make up a considerable portion of the fat in organ meats and yolks) are absorbed a bit different than dietary triglycerides (most dietary fats). Besides the fact the deficiencies in choline can be a big problem (choline is associated with phospholipids in liver and yolks), it might be diagnostic to see if you had lessened or worsened reactions from eating egg yolks instead of other fat for a meal or two. But to be honest, I really don’t have any knowledge on venous problems.
In terms of the lipid and A1C issues, I have some thoughts. First, for the A1C issues. A1C is just a marker of the amount of glycation on heme. So, the number will go up with high glucose levels, but it will also go up with many forms of anemia. It is important to note that in iron deficiency anemia (or in copper deficiency anemia, or potentially even molybdenum deficiency), the heme in blood cells is degraded more slowly (because our body doesn’t have enough iron to replace it), and this allows the heme to collect glycation sugars to a greater extent. Thus, without knowing fasting glucose and/or insulin, or having a 2-hour OGTT (oral glucose tolerance test), it would be difficult to interpret the A1C. I know most doctors are more than willing to claim a high A1C as indicative of diabetes without further testing, but that’s not accurate. And I’m not saying to go get more tests done, I’m just saying more would be needed for proper interpretation (and perhaps you already have these done).
For lipids, fructose certainly can increase triglycerides, because fasting triglycerides are a marker of how much fat the liver is synthesizing de novo. The more dietary fructose and the less dietary fat, the more de novo fat synthesized. This is not a problem in and of itself, but it certainly does increase choline requirements and it may indicate overall fat deficiency (your liver is making more fat because the body needs it). This is obliviously not easy to solve if fat worsens your symptoms. But the good news is that fructose can provide the substrates for your liver to make fat (whereas glucose doesn’t as much), so if you must consume lower fat, then having higher sugar is better than higher starch, in my opinion. Now, copper is interesting here, since copper deficiency causes an increase in the amount of fat synthesized in the liver, both triglycerides and cholesterol. I don’t know if the amount of extra lipid material is excessive in copper deficiency, or if copper deficiency somehow increase the peripheral need for fat which is why the liver is making it. But either way, increased LDL-c and/or triglycerides, especially when an anemia is present and/or neurological problems exist, may be very indicative of a long-standing copper deficiency.
Thanks for the collagen and fructose links. Fructose does increase, at least in a test tube, glycation to a greater extent than glucose. But alpha lipoic acid has been studied to increase glutathione and decrease oxidative stress, and copper deficiency causes increased oxidative stress. So, again, I think a good chunk of this is just the same ole? fructose causes copper deficiency, which interestingly may be much worse in men than women. Notice how the one study you showed me shows how men are more affected by fructose in terms of collagen crosslinking. Well, check out the last 2 links here that shows males worse off with copper deficiency than females (rats, that is).
What concerns me the most about your symptoms are the neurological ones. Eye sight, for instance, is temperamental and not easily restored if something goes wrong. Sure, diabetes could cause problems relating to eye sight, but so can deficiencies in choline, copper, B12, protein, zinc, A, D, B2, the essential fatty acids (ARA and DHA; both in liver and pastured egg yolks; ARA in conventional yolks, and DHA in fish). There may be a variety of other things that could cause vision problems too, and electrolyte imbalances can create temporary issues. But if you’ve been avoiding fat for some time, than it could be that you are deficient in vitamins A, D, K2, E; ARA, DHA; and choline/phospholipids. Eating at least few yolks per day, plus the extra vitamin A and D would be something good to do right now, I would think, even as you works everything else out. Perhaps experimenting with copper and/or some other things little by little may help you tease out what is going on. That ‘balanced’ zinc/copper supp you mentioned, what is the ratio on that? I think most are too far in favor of zinc. But something like 10-15mg zinc and 3-5mg copper should be ok as a supplement, I would think. I know ratios of 10:1 to 15:1 Zn:Cu are recommended, but I think lower ratios are ideal (perhaps 5:1), especially when phytic acid foods (grains, legumes, seeds, nuts) are not consumed, since phytates inhibit zinc absorption while doing little or nothing to copper.
Also, I would ignore any bashing you read or hear on copper on the internet. It’s misplaced. Copper levels in the blood increase in times of acute or chronic illness, much like zinc and iron decrease. These are all called ?acute phase reactants?, because their levels change in acute (or chronic) inflammatory conditions. C-Reactive Protein is another acute phase reactant, and since it elevates in many instances of illness, it is used as a marker for disease severity. Serum copper could be used the same way, as a marker of illness severity, but that does not mean one with elevated serum copper is ?overloaded? with copper any more than someone with elevated C-reactive protein is overloaded with the letter ?C? because of eating too much alphabet soup. Severe copper deficiency will lower blood neutrophils (neutropenia) and could cause anemias of all types (with low, mid, or high MCV and MCH). There are many ?clues? of copper deficiency in a blood test, but serum copper itself, is not usually one of them. I think supplementing 3-6mg copper per day (in divided doses) and judging your health response is likely the best way to determine copper status, but you can stop at any time if you don’t think it is going well. Copper could theoretically increases the requirement of molybdenum, so supplementing some molybdenum with copper may not be a bad idea (I would suggest something like a 10:1 ratio Cu:Mo; or 3mg Cu with 250 mcg Mo). But go by feel.
In terms of diabetes and glucose control, deficiencies in potassium, thiamine, and magnesium would all causes an inability to process glucose through glycolysis; and diseases with wasting of potassium and magnesium (such as hyperaldosteronism) always causes a worsening of glucose control, while hypoaldosteronism can actually causes life-threatening insulin sensitivity and low glucose. But if you’re eating lots of fruits I don’t think potassium or magnesium would be a problem. It’s the refined sugars and starches that could be problematic from a potassium/magnesium standpoint (and a copper point of view), since they are void of these nutrients, but require them for proper processing. So, again, this is where fruits and tubers should be fine as staples, while refined sugars better in moderation or not at all. In cases where, let ‘s say cane sugar for example, are tolerated better than fruit, I would recommend supplementing alkaline salts of potassium and magnesium (citrate, for example) along with the sugars, and consider supplementing thiamine somewhere in there, too. But this is just me saying don’t induce a further deficiency in something while you are playing around with finding what is already wrong.
All-in-all, it sounds to me like your body is beaten down quite a lot and that you have a long road to recovery ahead of you, even if all goes well from here on out. I wish I could wave a magic wand and cure you. I suspect you have many long-standing deficiencies, and that fixing one may produce some negative effects along with the positive, since fixing one rate-limiting reaction may causes another to be rate limiting to the point of a new set of symptoms. So, if something feels good at first, but then begins to produce undesirable effects, I wouldn’t take it as that thing being bad but that something else is now needed with it. For instance, many supposedly feel weird taking iodine, but then notice that extra chloride, selenium, B2 and B3 seem to make everything swell. And anecdotally, magnesium, potassium, and niacinamide help those with sudden increases in methyl donors.
Those are my thoughts. Let me know your own thoughts, and keep in touch either way.
Cheers, CPJanuary 3, 2015 at 2:54 am #17534
Thanks so much for your reply — again, very much appreciated. I meant to reply yesterday (which I should have as I was doing better) and then today, but eyes are wiped.
I will reply in more detail (but hopefully not too much this time!) in the next couple days, but wanted to just say that I’ve been unable to tolerate eggs (due to the fat content/venous insufficiency thing — I think), but did add about 3/4 of a yolk to my meal tonight. Will see how it goes overnight?
And I did restart the B2, and think that that may be helping a bit, but as you noted, adding a single thing, when other factors probably need attention as well, may cause a “worsening”, and later today, my eyes were either really watery, or sensitive to light, and/or by later in the evening, just worn out.
Will hopefully be in touch soon. Thanks again.January 3, 2015 at 2:58 am #17535
p.s. Speaking of conflicting info on the web, I’d be curious to hear your thoughts about William Walsh and Carl Pfeiffer ‘overmethylation’ and ‘undermethylation’ descriptions. It seems to me that no one could possibly fit into either category, at least as they describe them. Just an example of conflicting info — probably out of date info — but they mention copper, choline, etc., as being really bad for ‘this type’ but good for ‘that type’?
An example of something to ignore perhaps?January 9, 2015 at 3:05 am #17553
Just a brief update for now. Added the 3/4 egg yolk to my evening meal last Friday.
That was a mistake, big time. Saturday was unbelievably bad. Seriously thought I would not make it to the end of the day — just so incredibly crampy, twitchy, and extremely agitated and anxious. Must have some sort of issue with choline or acetylcholine?
Anyway, after about 8 hours of sheer hell, I did a thiamine shot, and for the first time that day I was able to calm down a little.
Will follow up more soon. Thanks again CP for trying to help. :)January 10, 2015 at 11:34 pm #17555
Please forgive my tendency to make typographical errors.
Honestly, your extreme reactions to fat concern me greatly, and I’m not sure how to interpret this.
As I mentioned at some point a while back to you, betaine HCl could definitely hinder fat digestion. Alkaline secretion in the intestine are needed for buffering the acid coming down from the stomach, and fat can only be properly broken apart via lipase enzymes in an alkaline environment. What this means is that if you had been and/or still are consuming many betaine HCl capsules your fat digestion could have become quite poor. Combining this with a low fat intake for some time now, and you could very well have experienced de-myelination from fat deficiency. Upon adding the fat back could give terrible sensations, which is standard for re-myelination.
Further, the acid load of the betaine HCl is worth considering. If you’re not familiar with acid/base balance as it relates to diet, consider reading these:
Basically, a net production of acid in the body which is not buffered by the kidneys at the response of various stress hormones results in massive wasting of potassium, magnesium, and calcium; lowered blood volume (which can produce the same symptoms as hyponatremia, or low sodium); and all the consequences of depleted electrolytes, including insulin resistance, poor digestion, excess histamine release, and muscle and bone loss.
Well, betaine HCl is 23.5% HCl, which means that one capsule of 648 mg betaine HCl (the NOW Foods one, for instance) has 152mg HCl. This represents about 4.3 moles of H+ ions, which is typically put into ‘equivalents’ of H+, so this would be 4.3 ‘meq’ (milli-equivalents). So, if you had taken let’s say 10 per day, then that would be ~43 meq acid, which would put you into a pretty decent acidosis. On our own, the body produces about 30-70 meq acid from normal metabolism. Ideally, your diet would perfectly balance this, so the diet would be negative 50 meq, or 50meq alkaline. It doesn’t have to be exact, but what this means is that an extra 43 meq from betaine HCl plus the body’s ~50 would result in a bout 100 meq acid needing to be buffered. Hypothyroidism (and other problems) prevents the body from properly acidifying the urine, meaning that the urine will be not acidic, but the blood is retaining acid. This is called Renal Tubular Acidosis, since an acidosis is occurring due to the renal system’s inability to excrete acid.
In any case, this could definitely create a potassium deficiency, which can, on its own, create diabetes. Fortunately, supplementing potassium in an alkaline form (such as potassium bicarbonate dissolved in OJ) can cure this fairly quickly. Something like 1/2 tsp K-bicarb with 1-2 cups OJ with each meal. This assumes you stop and/or have already stopped the betaine HCl.
Here are some paper showing/discussing rapid glucose/insulin improvement with potassium:
This may also explain your leg issues. I would add that if you are potassium deplete, you are also likely magnesium deplete. And since potassium supplementation can exacerbate magnesium problems, I would recommend supplementing some Mg-citrate or glycinate with the potassium. Something like 10-20:1 ratio K:Mg, since this is the ratio of the nutrients in most foods high in potassium.
By now, after years of restrictions of various kinds, you are likely deficient in several nutrients that could be causing a myriad of problems.
I urge you to consider ‘re-setting’ your diet to a well-rounded diet, sufficient in all known essential nutrients. Even if restricting fat makes you feel less bad for now, it is causing problems that will manifest sooner-or-later, and may already be causing a great deal of problems. Restricting an essential nutrient is never a good approach, in my opinion. I’ve done it for years myself in well-meaning attempts to help various symptoms, but it has never made anything better long-term and only ever made things worse. Any single deficiency will cause terrible symptoms eventually, and purposeful restriction of anything is likely to cause numerous deficiencies.
So, without knowing for sure which deficiencies are likely to have caused any particular symptom (though in some cases it may be obvious which deficiency is causing which symptom, it certainly isn’t always), I would say to re-focus yourself on a nutrient dense diet, expecting that an acute exacerbation of some things will occur. Then, on top of a well-rounded diet, I would recommend you consider continuing to experiment with various add-ons (‘supplements’), but no more than a couple at a time, and with the provision that you discontinue any that doesn’t seem to help after a couple weeks and that you don’t have a darn good reason for continuing. Symptoms can be caused by relative deficiencies as much as absolute, and increasing anything as the potential to induce a relative deficiency of something else, though some things less likely to do this than others.
For starters, I would suggest a well-rounded diet. Here is one suggestion (only a suggestion), which should have all the essential nutrients:
>= 4 egg yolks
~4 yellow to yellow-green bananas (more ripe reduces the prebiotic effect)
>= 4 cups OJ (with 1/4 tsp salt and 1/4-1/2 tsp potassium bicarbonate per cup)
>= 4 ounces of cheese
oatmeal (as desired)
Liver (>=2 ounces daily average)
One serving of green vegetable (spinach, kale, broccoli, whatever)
Plus whatever else you want
This would not be high fat, but it definitely has more fat than you’ve consumed in a long time. If the fat is causing your problems because of increasing endotoxin absorption, then eating good prebiotic foods (not pro-biotics, but pre-biotics) should help this. Greenish bananas, carrots, leeks are the natural foods high in good prebiotics. Oats and cold potatoes are also good. Supplementing inulin or potato starch is something some find helpful, but I would prefer whole foods to refined fiber supplements. On a personal level, eating 1 greenish banana with each meal was the thing some time ago that made a curative difference in my life-long IBS-d, and studies show that this can reduce endotoxin and ammonia, and their negative health complications.
As for the methylation thing you asked about, here are my thoughts. Most things out there on the internet or in books about health, whether from Mayo Clinic or Johns Hopkins or from ‘alternative’ health blogs and whatnot, are statements without any attempt at citing data to back up the comments. For some things that are easily searchable, I would think that is ok. But the issue I have with mainstream Big Med–where medical statements are entirely unsupported by real data, and often times completely disproved by data–is the same issue I have with most blogs. They are essentially opinion pieces. So, what does the data say on histamine and methylation, well methyl transferase enzymes are certainly involved in histamine degradation, as you can see by looking at the enzyme pathway on figure 2 of this paper:
But it is only one part of an entire pathway. The other cofactors needed for the other enzymes are copper (DAO), B2 (MAO), niacinamide (aldehyde dehydrogenase). Without these, intermediates like aldehydes can build up. Alcohol, for instance, is toxic. However, the degradation of alcohol in the liver is ethanol to aldehyde, then aldehyde to carboxylic acid. The carboxylic acid is easily excreted and is relatively nontoxic. As it is, the aldehyde is far more toxic than ethanol, and so this is what produces most of the effects. Persons with low levels of aldehyde dehydrogenase (AD), whether genetic or due to niacin or thiamine deficiency will have symptoms, most of which look a lot like ‘histamine’ excess problems. Molybdenum is also important for aldehyde metabolism.
So, when someone starts taking methyl donors and has problems, my thought is that something else in the pathway is now the new rate-limiter, and that needs to be fixed, not that someone has ‘methylation excess’. I would think B2, B3, copper, and molybdenum must be supplemented. I would also think potassium potentially, since kick-starting an important pathway may kick-start cell division which requires the intracellular ions, most notably potassium. Anecdotally, potassium has helped some people when they kick start methylation.
Now genetically, various SNPs can effect methylation and the surrounding enzymes, such as CBS (trans-sulfuration) and so on, which could certainly make one person require a higher amount of one nutrient compared to another person. But, I don’t believe methylation could ever be in excess. Methyl donors only come from three places: methionine itself; betaine (through choline or just as betaine); or glycine transferring its methyl group upon catabolism to folate to produce methylfolate. Folate and B12 are just cofactors, and they have nothing to do with methylation excess.
So, methionine, betaine/choline, and glycine are all nutrients that must be looked at. Methionine, it is very clear, has close to zero toxicity within a reasonable range of what could be gotten from food AS LONG AS enough glycine, B6 and B2, molybdenum, and alkaline are present, since glycine and B6 are needed to clear Met out of the methyl cycle through trans-sulfuration. B2 just activates B6. Molybdenum is needed to handle sulfite creation in the catabolism of sulfurous aminos, and since some of met and cys can be catabolized to sulfuric acid, extra bicarb will be needed to buffer this. Betaine and choline have such low toxicity, they are both considered very safe in high doses; my only concern on them would be their effect on the flora. And glycine appears all good and potentially a must-have supplement. So, I don’t buy-in to a true ‘methylation excess’, outside of precipitating a relative deficiency in something else that was already deficient but not noticed. I suppose the term ‘over-methylation’ could be used to describe symptoms upon increasing methylation pathways, which then implies deficiencies in something else. But I’m afraid many out there use ‘over-methylation’ to actually refer to methylation excess. Maybe I have missed something, but as of now I really don’t think that is possible outside of relative deficiencies.
There is more that could be said in terms of methylation, but that it my jist.
Dan, I may have left some things unanswered. I did not mean to do that, but I wanted to make special mention of fat metabolism and glucose control since that is what may be your biggest issue symptomatically.
I urge you to consider potassium bicarb supplementation, discontinuing betaine HCl (using anhydrous Trimethylglycine would be fine and potentially even good since it can partly makeup for deficient choline, but just not with the HCl), and adding egg yolks, liver, and some prebiotics to your diet. I am sorry your leg symptoms are so bad, but continuing to restrict choline and essential fatty acids (arachidonic and DHA, both of which are found in egg yolks and liver) is not going to end well.
Humbly, CPJanuary 11, 2015 at 3:03 am #17556
I have to reply while my eyes are (a litle) better — were terrible for the first 2/3rds of the day, could hardly open them. Ray Peat has mentioned that melatonin is bad for light sensitivity, and while I remember that — and probably stopped melatonin because of that quite a few months back — I did take some 2 nights ago (and slept so much better) and then again last night, but this morning until about 4:30-5pm actually, I could hardly stand to open them.
This also may tie in with the potassium bicarb thing as well, as a poster on the PR forums said she had burning, dry eyes which she thought was due to too much betaine HCL, and the acid/alkaline imbalance you’re talking about — and found that cutting back on the HCL and increasing the pot-bicarb resolved that. I have found that a nasal rinse of potassium chloride/bicarb has helped somewhat at times, but I’m guessing already that the chloride is a problem???
Anyway, thanks SO MUCH for your reply. I suspect you’re correct, as I’ve taken this stuff for 15 years now, in various amounts. But have been able to go down to 3-4 caps per meal, and more importantly, just in the last year, when I was doing “better”, a friend or family member would take me out to lunch, and I had forgotten my enzymes, and you know what? I didn’t seem to have any OBVIOUS motility/gastroparesis/hypochlorydia issues.
Thanks too for all those studies. I breezed through most, due to my eyes, but very interesting and compelling.
You’ll be shocked — but there have been times when I got up to “needing” NINE HCL’s per meal. That hasn’t happened in years though, and was at about 4-5, upon your suggestion from that other thread I think, but within the last few days went up to 6-7 (!!!) and stomach emptied at a more normal rate. But did I pay the price in the process? Probably so.
Interesting about the loss of calcium. I had heard about mag and potassium, but not calcium, and have had issues with that for at least 12 years. Can’t seem to get enough from food (although again, have had times out w/family where it didn’t seem to cause a problem, at least to my recollection — like a little cheese on a sandwich or in salad), but cal/mag or ‘bone’ supps can cause the same sort of cramps, twitching, and possibly the RLS as well.
I do have some TMG, and could try that. Or maybe just try and go without — whatever you think is wisest. I think I probably did mention this above, but I “seem” to have a problem with choline supps or foods, but did feel like this slow downward spiral excelarated (sp) back in Feb or so when I started lecithin, and also when I have taken any sort of choline supp — like krill oil — or — eggs.
I know that eggs and proper fats are EXTREMELY important. When I was taking care of my mom 20+ years ago, I was seeing an ayurvedic practitioner, and reading about it as well. At one point about halfway through (she was sick for 6 years), I thought I would just lose it and have a complete breakdown. I read in the books that, being a ‘vata’, I needed to increase my fats, so I started eating quiche, and full fat milk. And — it worked. I calmed down considerably, and could handle the (often) 24/7 weeks.
But for whatever reason, I can’t seem to do that now. Although I know in the last year I must’ve had SOME egg or some butter when I ate out (gluten-free) at a restuarant a few times, and don’t think I suffered for it, at least not like a week ago.
I’m sure you’re correct, that this lack of fat is affecting the myelin, so that could be a cause of the cramps/twitching etc. Interesting that Peat says more salt will help w/that — it does — but then my eyes, sinuses dry up.
But it also, definitely affects my circulation. Any type of fat, except perhaps from fish. And I think — think — that that’s where the RLS and just this severe (and seriously, I do mean SEVERE) uncomfortable feeling comes about. On those bad days, if I look at my toes, they’re practically white — and have to squeeze them to get any pink color. So different from even 2-3 years ago. Even coconut oil does the same thing. Plus, as I mentioned above, I did not think I’d make it to the end of the day last Friday, because of the severity.
So I’m not sure how to proceed. My sister is coming down on Monday, and the eggs I have were supposed to be used by Dec 15th, so I suppose I could get another half dozen, and start with a 1/2 egg, and see how it goes?
I do have some ox bile — do you think that would help w/the fat/circulation issue?
I do get carrots — probably too many — but can’t stomach bananas (most of my life) and for the last couple years can’t seem to tolerate potatoes, which is a shame, as I know they’re high in potassium. I could try them again, but the last three times I have — the next morning or late that night — severe cramping. I attribute that to solanine blocking acetylcholinesterase, but?what do I know? That’s just from some reports I’ve read that seem to make sense, plus the study that showed low-b12 prevented breakdown of acetycholinesterase. Does that make sense?????
What do you think about the possible thiamine deficiency connection? It can cause all sorts of both heart disease and neurological symptoms, plus metabolic issues, esp when it comes to ‘refeeding’.
Have been tolerating b6 in small amounts as long as I take b2, and also tolerating folinic and some b12. Interestingly, and frustratingly, I had similar symptoms — very obsessive, etc., thought-I-was-gonna-die stuff, back in 2002 — all year long, and should note that I was also having teeth shifting problems then too, but cal/mag didn’t seem to help, but probably wasn’t getting anywhere near enough ‘d’ — BUT — the two things that resolved it, actually three — were methylb12 injections — stopped the obsessing almost overnight, along with nebulized glutathione (had money back then), and after a few months, THIAMINE injections for a month, completely calmed me down and I was okay for about 14 months.
Then I ran out of money, stress went WAY up, and I completely forgot what had helped, as going on disability — applying for it, etc — took over my life.
But that was 12 years ago?and with all the damage or neglect or whatever since then, I doubt these things would fix me like they did back then, but it’s worth noting anyway, especially w/all the white (and other thiamine-depleting foods) I’ve eaten for so long.
THANK YOU CP.
p.s. This will sound STUPID or incredibly gullible/idealistic, but by any chance would you know of anyone out my way (Seattle) that I might be able to lean on if I need objective assistance, let alone assistance?January 11, 2015 at 3:12 am #17557
p.s.p.s. No need to ever apologize for typos or gaffes. I just realized I mentioned “teeth shifting”. I’ve had this off and on ever since I had my amalgams replaced back in 88 (10 years before I crashed w/CFS), but it got worse since about 2006 or so. It’s gotten better too, but now I wonder if it ties in at all with the betaine HCL supplementation.
Of course it would help if I could get the dental work done that I’ve needed since about 2003!!!
Also I DO appreciate your frankness and honesty — this comment is scary, but I appreciate it: “I am sorry your leg symptoms are so bad, but continuing to restrict choline and essential fatty acids (arachidonic and DHA, both of which are found in egg yolks and liver) is not going to end well.”
Deep breath. Hanging by a thread, but not giving up yet, thanks in large part to your trying to help.January 11, 2015 at 6:26 pm #17559
Hi again CP,
Just wanted you to know that I took only 1 (or 2?) betaine HCLs with my breakfast this morning, and had no issues with food staying stuck in my stomach. So thank you — I’m just finishing lunch — with one HCL — so will report more tomorrow.
Maybe my body was trying to tell me “ENOUGH of the BETAINE HCL”, and was trying to reject it by stopping motility/digestion?
Only side effect is the tightened left leg / borderline RLS feeling, but I think that started just before I got up this morning. It did worsen after breakfast, but not to a disturbing level.
One thing — haven’t tried the potassium bicarb yet, at least orally. Does one take that away from meals, and how much would you suggest?
Anyway, thanks again. Wish I had been told this by the dozen+ doctors I’ve seen over the last 15 years!
DanJanuary 14, 2015 at 2:06 am #17560
For the K-bicarb, I would suggest starting at 1/2 tsp dissolved in 1-2 cups juice (something acidic), which will become a carbonated juice, to be drunk with each meal. OJ, apple juice, or whatever will work. Let the bubbles dissipate mostly, which should take a couple minutes after stirring the K-bicarb in. Theoretically, taking enough to bring your total ‘net endogenous acid production’ (NEAP) to zero would be ideal. This would depend on what you eat. But 1/2 tsp K-bicarb 3x daily with meals is a good guideline for most people, I think. You can always adjust from here.
I would also say that persons with adrenal insufficiency problems, which may be a big part of CFS, have a hard time expelling potassium and tend toward high potassium in the blood, even if tissue levels are low. Increasing blood potassium normally results in increased aldosterone secretion from the adrenals, which then increases potassium excretion, increases potassium uptake into tissues, and decreases sodium excretion. Thus, if one has healthy adrenals, increasing dietary potassium may actually lower sodium needs to a point. However, if one’s adrenals are not up to par and/or if ‘aldosterone resistance’ is present, then the increased blood potassium will lead to a natiuresis (a wasting of sodium into the urine), which will lower blood volume, drop blood pressure, and make you feel terrible. Independent of aldosterone, alkaline (from the bicarb) helps increase potassium uptake into cells, so K-bicarb is much less likely to cause this problem than K-chloride would. However, it should be guarded against when first supplementing with the K-bicarb. So, I recommend eating and/or drinking plenty of salt throughout the day to ensure the potassium isn’t lowering blood sodium. You can do this any way you want, including adding salt to your juice mix, or drinking salted water or whatever. But 20-40 grams of salt daily is not unreasonable for Addison’s or hypoaldosteronism patients.
As I said before, magnesium may also be needed. So, in sum, I recommend 1/2 tsp K-bicarb dissolved in at least 1 cup juice with each meal, along with ample salt and some magnesium. Ultimately experimentation is needed to sort out the ideal ratios and so on. Using sodium bicarbonate (baking soda) is a way of adding extra alkaline without the potassium, and perhaps one day you decide to do a combo of potassium and sodium bicarbonates, and other experiments. But for starters, I would recommend keeping it at potassium bicarb and sodium chloride since that is how the minerals come in foods and nature most often.
Many of your symptoms–dry, sensitive eyes; poor peripheral circulation; potential diabetes–sound like they could be Sjogren’s like issues and ‘mixed connective tissue disorder’. From some of the things I’ve read, the symptoms of Sjogren’s–which is said to be an autoimmune issue of secretory and excretory glands–are manifestations of acidosis, which is induced due to kidney damage. I would think fixing the acidosis with bicarbonate supplements could solve the eye, skin, and circulation problems. It will be interesting to see if you notice any benefit. Of course we both will be hoping for good improvement in your symptoms.
For digestion, you mentioned ox bile. Sure, try whatever. Some studies indicate taurine can glycine can both help increase bile acids, which can assist with fat digestion. But I would not assume that this will make you ‘handle’ fat better. In fact it may make you feel worse after eating fat, depending on why it is you feel worse after eating fat. If it is the absorption of endotoxin from the intestinal lumen, then any emulsifier (phospholipids from egg yolks, ox bile, or your own bile) will likely increase endotoxin influx and make your symptoms worse. But there are other possible causes of your problems, so giving ox bile a try is not a bad idea. And remember, fat needs alkaline to help digest (lipase enzymes from pancreatic excretions require an alkaline environment), so metabolic acidosis and/or too much betaine HCl with meals may severely hinder fat digestion, independent of emulsifying agents. Keep that in mind.
For your eyes and sleep, perhaps you would find a blue-light filter on your computer helpful? I know I have benefited from a blue light filter on my computer. I use F.Lux, but there are also others. I put the ‘color temperature’ usually to 2700 on bright sunny days when I have the windows open, and 1900 otherwise. Melatonin synthesis is also inhibited with blue and green light peaks, so yellowish-orangeish-redish lights before bed are likely best. A healthy person may not be bothered, but I have found it helps. It’s free and something to consider.
As for people in the Seattle area: I grew up in the Seattle area, myself. Though I don’t have any recommendations for doctors or persons to get in touch with, I would say to anyone and everyone that many (though not all) churches offer a number of supportive programs to those with disabilities and financial troubles. Catholic churches vary considerably in their help based on the assigned priest and the parishioners; Mormon churches, especially wealthy ones in upper-middle-class venues may be the best bet for getting support. Some may take offense to me saying this, but our society does not have great out-reach programs for those who, through no fault of their own, fall through the cracks, especially those with serious physical disability. The goal should always be to get back on one’s feet, and I think you can get there. But even if all goes well, it won’t happen overnight. And just surviving in the meantime, as you well know, can be near impossible. Many Mormon and Catholic churches often have support programs for persons who are not even attending or registered parishioners. Many other groups force attendance in order to get any help, which, while I understand, is less helpful for most.
Hopefully you will notice benefit soon from alkaline potassium, and perhaps soon you’ll be able to tolerate egg yolks in your diet. I am less concerned with absolute levels of fat in your diet than I am with choline-rich fats (yolks, liver) and the EFAs ARA and DHA (again, yolks and liver). While it’s not cheap, desiccated liver is a convenient option for people on the run or who can’t stand liver taste but want the health benefits of liver. It’s very low total fat but high in the phospholipids, so it may (or may not) be something you could tolerate better.
I wish you well. Stay strong. Keep in touch. I’ll be here if you have any questions for me, but I’m afraid I don’t have the answers. But perhaps you can pick up a thing here or there from me and from others and from your own experimentation and ultimately find some good answers. But I enjoy our dialogue so don’t be a stranger.
Peace, CPJanuary 21, 2015 at 7:50 am #17576DutchieParticipant
Is there a way to contact you?(I looked if there was a PM function,but there isn’t)
I don’t have a lot of time now to write up everything here and in a clear structured manner,but in trying to solve my issues I also came on the path of Fructose malabsorption,liver function,guthealth,mineral/vitamin deficiencies etc.,PCOS-like symptoms.
I’d love to hear if you migth have some experiences/suggestions on my issues.January 26, 2015 at 12:09 am #17593
I am sorry to hear about your issues. And I’d be happy to answer any questions you have, or to try to help explain things to you the best way I can so that you can hopefully solve all your problems. However, as a matter of principle, I won’t be giving out personal or contact information on the forums, since these forums are open source to all and forever. I would like to keep my personal privacy, and the only way I know how to do that is to use a pen name and to not give out personal information. I hope you can respect my position on this.
But I am patient and more than happy to communicate with you whenever you are able to write. An added benefit of doing it this way is that any golden nugget we discover together on the forums will be readable by future readers for whom the information may be a saving grace. Though I know this may make things more difficult for you in some ways, I would like to think we can make this work, if you’re up for it.
I’ll think about these things you listed and respond back soon with my thoughts.
Sincerely, CPFebruary 7, 2015 at 5:39 pm #17609
I have not looked into PCOS extensively in the past, so please take these thoughts with great criticism.
Let me start by commenting on some stuff you may have already read or are likely to read about with some searching around. Then I’ll end with some general opinions on the approach I would take. But know that ultimately your own tinkering is likely going to be needed in order to find the cure, and most out on the web are very comfortable telling others how to do things, even when their own health sucks. (I suppose I am not that much different in that sense, since I am still fighting my own battles. So, again, take these things carefully.)
Recent trials have appeared to find fairly decent success in PCOS by supplementing inositol.
The question would be, how is inositol, which is not universally considered an essential nutrient, helping hormones and/or metabolic function in PCOS women? Well, I have some thoughts. The first possibility is the obvious, and that is that inositol actually is essential in the diet, and that for whatever reason some women have a much harder time biosynthesizing a certain minimum than others and/or have increased dietary requirements for other reasons. But considering the shear quantity being used by some women and in trials, which I find to be higher than what one could get from a reasonable diet, I think the pharmacological amount is likely partly making up for something else. And that that something else is what we should be restoring.
Inositol is known to be important as a ‘second messenger’ which just means it is an essential part of certain hormonal cascades, including insulin. An inositol deficiency could therefore mean, in theory, less efficient insulin signalling and a resultant ‘resistance’. Since PCOS women are commonly insulin resistant, inositol deficiency seems to make a nice and tidy explanation. However, not all PCOS women are insulin resistant, and even massive doses of inositol does not fully cure the PCOS or insulin resistance so I have a hard time accepting that this mechanism should be considered universally applicable.
Inositol is also important as a component in phospholipids, much like choline, though not nearly as important in scale. Choline deficiency is a huge factor in fatty liver and liver dysfunction, and in animal studies going way back, both inositol and choline can alleviate the fatty liver. What is interesting is that they appear to do this via separate mechanisms. Choline is needed to help the liver escort fat and cholesterol to peripheral tissues. And inositol appears to downregulate lipogenesis in the liver, thereby lowering the need for choline (less fat is needed to escort out of the liver).
While we’re on the subject, I would like to say that both taurine and glycine (amino acids) relieve some burden on choline by moving cholesterol into the bile-synthesis pathway, as opposed to the systemic circulation pathway. Taurine and glycine have both been shown to be highly protective in high fat diets in rats and mice in alleviating metabolic stress in the liver, and in human trials in appearing to help many serum markers that have become common to track (triglycerides, LDL-c, HDL-c, fasting glucose, etc.). Glycine and taurine have both improved insulin resistance in humans, as has choline supplementation. The liver is known to be a key intermediate of the metabolism of many nutrients, so it would not be surprising to me to find out that a major systemic illness was actually liver injury as its root.
Several other dietary factors connect to this. Fructose, for instance, can be malabsorbed and can fuel bad flora growth with the resultant endotoxemia which places big time stress on the liver. Presumably, this would drain liver stores of several nutrients, including choline, glutathione, glycine, and some B vitamins like thiamine and whatever else. But eating enough glucose or starch with the fructose would alleviate this problem, since fructose is well absorbed provided one eats as much or more glucose as fructose (which was the point of this entire fructose thread initially). However, if fructose is absorbed fine, even then it will place a small drain on choline levels in the liver, since a good portion of fructose is turned into triglycerides in the liver, which then need to be exported systemically via phosphatidylcholine. This is not me saying ‘fructose is bad’, but just that fructose requires extra choline when compared with glucose. Glucose likely requires extra thiamine, since glucose is metabolized through pathways (glycolysis and pentose phosphate shunt) that rely extensively on thiamine, so we’re even. But what this means is that fructose is going to be problematic for individuals who are already low in choline. Dietary fat, too, needs choline for its processing. So, really the best diet for SPARING choline would be a starch and protein diet. But sparing choline is only so helpful. Eating choline is how one is going to make up for a deficiency, and choline is in egg yolks and organ meats. So, adding 6 egg yolks to the daily routine should help this whole thing, and lowering fat and fructose is likely not needed provided enough yolks are eaten.
Now, estrogen helps increase choline synthesis, and so men are typically the ones with insufficient choline status. It would seem possible in this case that perhaps the low estrogen, high androgen disturbance seen in PCOS is causing the inability to synthesize as much choline as is ideal, which then results in the systemic effects. Meaning that PCOS occurs first as low estrogen, which then eventually results in low choline, which then results in insulin resistance and high cortisol, which then has its own terrible effects. In this model, eating lots of egg yolks and avoiding empty sugars and fats could save one from the systemic nightmare that effects the worse-off of PCOS women, but it wouldn’t ‘cure’ the initial problem in the first place. On the other hand, it may. Even healthy women who have genetic downregulations in PEMT will be poor choline synthesizers, which could make one choline deficient independent of bad hormones to start. Then, the choline deficiency could cause the liver dysfunction and the insulin resistance and adipose dysfunction, ultimately leading to low SHBG and high androgens? Honestly, I don’t know. But I thought it might be helpful to think outloud here.
What I would recommend for everyone is to eat a well-balanced diet, high in all the known essential nutrients, while continuing to poke and prod the details of any chronic illness. Some individual may have one chronic deficiency, and another person could have a different one, but restricting the diet in any way will ultimately lead to numerous additional deficiencies which isn’t helping anything. I think a lot of people on the 180degree threads have made a go at consuming high quantities of relative junk food in an attempt to cure their problems, and I think this is a bad approach. I think eating high quantities of nutritious foods is good, but tubers, fruits, cheese, egg yolks, organ meats, shellfish, and salts beat cookies and crackers and coco-puffs any day.
I saw you asking about salt on a recent post of yours, so allow me to share some thoughts. Low blood volume is one of the major stressors on the body. The body has, as I see it, basically only two things it views as a stress: low oxygen perfusion through the brain (which could be caused by low blood volume and/or low oxygen transport via anemia and/or low CO2 since CO2 is needed for oxygen delivery to tissues) and low glucose availability for the brain. Low blood volume is a huge stressor, and low blood volume can be causes both by low sodium and also acidosis. Salt can therefore be very helpful to keep blood volume up. However, there is a caveat, and that is that acidosis produces a volume contraction. The blood has only two major anions, chloride and bicarbonate. Chloride represents the acid and bicarb the alkaline or base in the blood. When one eats lots of NaCl, a mild acidosis can result because of displaced bicarbonate. What this means practically, is that having a little NaCl can increase blood volume, but having a lot (what ‘a lot’ means depends on the person) can decrease blood volume a little. But adding some bicarbonates to the chlorides, such as a mix of NaCl and Na-bicarb can eliminate this effect. In foods, the alkaline is typically citrate and malate and from potassium. One could make their own potassium citrate by dissolving potassium bicarb in OJ, or potassium malate by dissolving potassium bicarb with apple juice or sparkling apple cider. But a balance is important. If someone used potatoes or bananas as their staple, then I would not see any reason to use sodium or potassium bicarbonate, but I would think just lots of NaCl would be good. But if someone was eaten a lot of ‘acidic-forming’ foods (grains and animal products), then adding lots of alkaline potassium PLUS NaCl would be a good approach. (As a quick aside, I would never recommend potassium chloride. Transcellular flux of intracellular ions K and Mg into cells occurs in alkaline conditions, so Na-bicarb could cause low blood K; however, acidic conditions can increase serum K and Mg, so K-Cl can dangerously elevate serum K levels. I think K-bicarb and Na-Cl are the best ways to add each, far safer than K-Cl and Na-bicarb.)
So, how about those raw vegans? In healthy people, potassium can help the kidneys retain sodium. Here’s how: increased serum potassium stimulates aldosterone secretion by the adrenals. Aldosterone is the primary ‘mineral corticoid’ in the body, which means that aldosterone is the major ‘stress’ hormone responsible for increasing blood volume. It does this via increasing sodium retention, increasing potassium excretion, and increasing acid excretion as ammonium from breaking apart amino acids. What this means is that simply having a lot of potassium could help the body retain sodium, provided that one’s adrenals are capabale of pumping fairly high amounts of aldosterone. However, in any kind of adrenal insufficiency state such as Addisons’, the adrenals are not able to pump out aldosterone in high amounts for whatever reason. I have also seen cases of thiamine deficiency causing this in rats; and aldosterone acts via stimulating methylation in the kidneys, so theoretically a deficiency of betaine and choline and methionine could cause a sort of ‘alodteronse -resistance’ in the kidneys, which could manifest as a ‘adrenal fatigue’ type thing.
Choline can be used as a methyl donor in the body to remethylate homocysteine back to methionine. Choline is turned into betaine (aka trimethylglycine, or sometimes TMG). So, a choline deficiency (which may be a piece of PCOS) would likely also manifest as a methyl donor deficiency, which could create a sort of aldosterone resistance, which could mean an inability to properly excrete acid and retain sodium, which would further increase stress hormones. Acidosis, as I have posted some about in previous posts within this thread, can have very negative effects on cortisol and other ‘stress’ hormones, which could lead to weight gain, acne, hirtuism, and whatever other terrible symptoms are common in PCOS women (and frankly many women within our society on a ‘subclinical’ level).
So, how do we approach this? Eating more choline, taurine, glycine, inositol; supplementing with enough NaCl and eating alkaline tubers and fruits as the staples; and otherwise eating a well rounded, nutrient-dense diet is, without knowing, what I would recommend.
I view a healthy diet as one that does two things:
1) provides all the essential nutrients for the body in the right ratios and amounts
2) produces a robust, healthy flora, which through mechanisms only beginning to be worked out, can mean everything for certain diseases.
Honestly, the second one is the easy one: eat foods high in resistant starch and other prebiotics, such as cooked-then-cooled potatoes and greenish bananas. Resistant starch fuels the good bugs, which produce butyrate, which itself feeds colon cells and modulates the immune system and increases Treg (regulatory T cells). For all those sports fans out there, low dose naltrexone appears to exert its anti-autoimmune effect by increasing Tregs, so butyrate is the natural way of doing this. In fact, SIBO (overgrowth of bacteria in the upper portion of the intestines) may be quickly cured by resistant starch (RS), since bacteria jump on the large RS granules but take hours to digest it. By the time they are done digesting it, the granule has long-since passed the small (upper) intestines, and is safely in the cecum (upper colon). In this way, RS effectively ‘sweeps’ the bugs down, which is presumably nice. A diet high in quickly fermenting sugars (sucrose and fructose) and small starch molecules may do the opposite by allowing the bugs to effectively climb the intestinal ladder. As long as RS is a considerable part of the diet, I don’t think sugar will give one any issues. I wish there were more clinical trials in this stuff, but there are poresently a lot of n=1 anecdotes. You can read more how to incorporate resistant starch into one’s diet by reading some of the posts at ‘Free The Animal’ and following especially ‘Tatertot’ aka Tim Steele. But long-story short, don’t eat junk food and use tubers and bananas as your staples. Don’t underestimate the power of gut health.
The first thing (getting all the essential nutrients in right ratio, etc.) is less easy, since there is far from any agreement about precisely what nutrients are essential. I have a lot of my own opinions on this, but let me just say that ratios can matter as much or more than absolute amounts, so be careful with the zinc and iron, since they can knock out copper and manganese. But following a diet with tubers and bananas, plus organ meats, yolks, yogurt/cheese, and so on to round things out, will be a good base. I personally think egg yolks are highly underrated, and I think they offer many nutrients (like choline and essential fatty acids) that will balance a tuber/fruit diet very nicely. If you need more caloric density (and may do well with extra caloric density), then try to do so with foods that are less known to cause issues to flora: so cane sugar/honey/ maple syrup not corn syrup; butter/cheese/egg yolks not vege oils. But I still think most should get their carbs from whole foods (tubers, fruit) and their fats from whole foods (yolks, cheese, organ meats, yogurt). On top of this, you can experiment around with specific supplements, but at least you’ll know you’ve got the majority of things going good with your diet.
Let me know you thoughts on all of this. This was not intended to be a full account of everything, but hopefully I have said or linked to something that you may find helpful.
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