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  • in reply to: Can't digest enough. Digestive Enzymes? #17595

    Another late night. Today was better at first, had corn cereal (w/sugar) and milk, and did ‘okay’ for the first part of the day, esp considering having to deal with a stressful potential plumbing problem discovered in my bathroom around noon. Feet were definitely tinglier, but it was tolerable because the “energy” increase helped balance things out.

    I definitely want to minimize the negative effects as much as possible. Not stress like crazy about them, but minimize them, as this glycation affects microcirculation all over the body, and certainly can’t afford for my eyes to get any worse. Having said that, my eyes (and my sinuses) seemed to be better yesterday, and have been worse during the second (late) half of the day, perhaps because I didn’t take any sugar at the end of my lunch today, like I did yesterday.

    Also, my teeth are in bad shape, have been for more than a decade, but can’t afford to have them fixed — so I’m worried about lots of sugar in that regard. Plus, my frail state makes it almost impossible to have dental work done right now. Wound healing isn’t good at all. I did have them cleaned 4 years ago (already) and just having that done left me feeling like I had MS for the next several days. The pockets were surprisingly better than both the dentist or I expected them to be. Still, need several crowns, multiple small cavities filled, a couple of cracked teeth redone, which would probably total $20,000???

    The salad — I almost never have salad, and like you, I’ve read, and experienced that raw vegetables and fruit often aren’t digested as well. But I guess I had it for the folate and viatmin c/bioflavonoids, and the fact that I DON’T eat and haven’t eaten almost any raw foods for years now (because I thought I was had a salicylate intolerance, and still not sure). But not eating some fresh foods resulted in another problem connected w/both pre-diabetes/insulin resistance, but also insufficient bioflavonoids/vitamin c and a lack of exercise — and that’s venous insufficiency in my legs.

    It manifests as a weird looking tan/rashy looking patch of very dry skin, due to poor circulation or ‘insufficiency’. The factors mentioned above result in ‘leaky valves’, another thing that I wish I could fix now, but probably needs to wait in line.

    I’d be very interested in hearing more details about your prior situation — if you were bedridden or housebound? 120lbs — that’s extremely severe — not sure how you could possibly stand, let alone walk. My feet have become increasingly painful over the last 6 years or so, and thus my ability to stand or walk has decreased as a result. It feels like I’m walking on bone, as I’ve so little muscle (and almost no fat) on the bottoms of my feet, but still have flub around my middle — again, classic beri-beri.

    I’m curious however, if you’re on Facebook (and a member of the FB group?), as it would be easier to ‘chat’ or perhaps exchange email addresses, or skype? I guess, at least personally, I’d feel more comfortable talking about some of these things in less of a public way.


    Thanks again.

    • This reply was modified 9 years, 4 months ago by DannyJ.
    in reply to: Can't digest enough. Digestive Enzymes? #17594

    Thanks so much for your replies J-Lo — they mean a LOT to me, especially knowing you’ve been through a similar situation, at least weight and digestion-wise.

    It looks like I wasn’t responding to your 2nd reply above, but we must’ve been posting at the same time earlier, as your reply wasn’t there when I posted my “p.s.”.

    But it’s late now, so will have to reply in more detail tomorrow. Suffice to say that yes, I do indeed and unfortunately have many, if not most of the symptoms of beriberi, which you probably know translates to “I cannot, I cannot”.

    Hopefully that will change to “I can” in the future. You’ve given me hope.

    p.s. LOL about the salad! :)

    in reply to: Can't digest enough. Digestive Enzymes? #17590

    Also would be interested to know how fatty acids become ‘free’, and how that affects things.

    I just realized too that I when I added a tiny amount of sugar to my breakfast, I actually didn’t experience any tingling or neuropathy, but am having it now, I think as a result(?) of ending my lunch with a small salad w/sesame oil and vinegar.


    in reply to: Can't digest enough. Digestive Enzymes? #17584

    Wow, thanks for that lightning-fast reply J-lo — very much appreciated.

    I haven’t tested for free fatty acids, but when I do have fats, in food, I do best with salmon, but other than that, yup, it’s usually been some sort of pufa-fat, like evening primrose oil, or lately, some small amounts of coconut oil. I also take a tocotrienol supplement.

    I’m TRYING to add real fat — saturated fats like from eggs, but have had a problem with that for years and years now — they tend to give me an awful restless leg situation.

    This started about 10 (gulp) years ago, about five years after being diagnosed with ME/CFS. I went into semi-remission a couple of times, and could go out for breakfast w/friends, but whenever I had anything too fatty (eggs, sausages, hash browns), or something too creamy, say from an indian restaurant, I’d get that severely uncomfortable RLS-stuff.

    So I backed off, although from time to time had refried beans and semi-normal amounts of other fats at a Mexican buffet close to my former apt, and did okay, but at home, I’d get all paranoid — wanting to sleep of course and not be up all night with RLS — and avoid fats.

    I’m waaaaay down on my weight (6’2″, 160lbs if that), so much so that I’m using a wheelchair 80+ percent of the time, and having dry/goopy/watery/just plain FRIED eyesight as well (and sinus issues), but have lost a ton of muscle (and I was very skinny to begin with).

    Doc prescribed thiamine injections back in June, which helped, but I couldn’t afford to continue. Thiamine deficiency makes a lot of sense as I’ve eaten way too much white rice (and brown rice) for years as I tested gluten intolerant. But rice has arsenic, and white rice has no thiamine, so that’s probably a huge problem. Also, too much veggies, not enough meat probably, although have tried the gelatin from Great Lakes. (I’d be interested in what form of gelatin you take?)

    Got another thiamine refill 3 weeks ago, but am spacing it out as they’re so expensive. I read a study that said that only 4.5 mgs of oral thiamine is absorbed even in normal subjects, no matter how high the dose. So many things interfere w/thiamine.

    There is a sublingual that I’ve tried and should get more.

    Anyway, thanks so much. Any suggestions are VERY much appreciated.

    in reply to: Can't digest enough. Digestive Enzymes? #17581

    Hoping you will see this j-lo and Will?

    With all that sugar, I’m wondering if either have you have had your hba1c levels tested, or triglycerides, HDL, LDL cholesterol?

    I’ve tried in the last 2 years or so to increase sugar — and did — but then all my so-called pre-diabetic/metabolic syndrome numbers got a lot worse, and my blood pressure went up. I also get the tingly feet thing as well.

    I don’t get nearly enough calories though due to the same issues you had (slow gastric emptying, “acid”-reflux, etc), but wondering if that would make a difference?

    Again, hope you see this.


    • This reply was modified 9 years, 4 months ago by DannyJ.
    in reply to: Fructose Malabsorption #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!


    in reply to: Fructose Malabsorption #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.

    in reply to: Fructose Malabsorption #17556

    Hey CP,

    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.


    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?

    in reply to: Fructose Malabsorption #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. :)

    in reply to: Fructose Malabsorption #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?

    in reply to: Fructose Malabsorption #17534

    Hey CP,

    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.

    in reply to: Fructose Malabsorption #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:

    And tryptophan:

    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.)


    • This reply was modified 9 years, 5 months ago by DannyJ.
    in reply to: Fructose Malabsorption #17522

    “In any case, specific to fructose, provided it is absorbed, it’s all good.”

    Okay, late to the game here, but from what I’ve read lately, fructose is what causes metabolic syndrome/pre-diabetes (not glucose), plus all sorts of inflammation, and issues with collage breakdown, not to mention it binds to tryptophan, which then can cause anxiety/depression issues.

    CelticPhoenix — if you find this thread again — I’d love to hear your thoughts on this.

    in reply to: Just another binging newbie.. #16682

    Napster said:

    “This is the danger of long-term VLCing and hypolcaloric diets. What you see are the exact same phenomenon among people who starve themselves. Immune defenses break down because there isn’t enough glucose to mount mucosal immunity. That’s why you end up with dry eyes, dry mouth, dry colon and constipation.”

    This makes sense to me, but I’ve also read that too much sugar increases the risk of dry eyes.

    Here’s the link — hoping you and other might be able to comment. My eyes are so dry lately?also sinuses, and have been battling a sinus infection for the last 6+ months.

    :Research published by Lane, Hart and Josephson reported the depression of tear-film break-up time (TBUT) to be less than 10 seconds when the ratio of sucrose intake/food-folic-acid intake > 6×10-2 teaspoons/microgram. Simplified, this means that ingesting six teaspoons of table sugar per day requires 1,000 micrograms of folic acid to prevent the TBUT from dropping below ten seconds.”

    Thanks in advance.

    in reply to: High triglycerides and BP from increased sugar… #16053

    Thanks for your reply.

    Yes, I’m trying to cut back a little on the sugar?but hopefully won’t lose weight, as I’m extremely thin (except around my middle) and need to gain. But also don’t want to develop diabetes or pre-diabetes!

    Interesting about the fatty liver. That does seem to make sense?I’m not sure what to do about it, although I guess some have tried ‘liver cleanses’ or ‘coffee enemas’ (!!!).

    Good luck, and thanks again.

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