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DannyJ,
I am sorry for your issues. I read all your comments within this post, but I am unaware of your history.
Here are some thoughts.
Chronic Fat Deficiency:
One thing I have read (not experienced myself or in those I know) is that long-term fat deficiency (due to caloric or fat restriction and/or malabsorption) can led to de-myelination. What then happens UPON REINTRODUCING FAT IN THE DIET is that the re-myelination can cause tingling and nerve-type pains. This is reportedly not uncommon in recovering anorexics.
http://www.youreatopia.com/faq/specific-recovery-questions/are-fats-saturated-fats-bad.html
http://www.youreatopia.com/blog/2013/5/25/why-is-there-so-much-pain.html#comment20052176
In this second link, carefully read the comments from Gwyneth (bunny avatar), who is the site creator.
I think that if your history involves restriction, then your chronic fatigue MAY be simply a terrible manifestation of the chronic undernourishment. There MAY OR MAY NOT BE other ‘autoimmune’, ‘infectious’, or other issues involved. I would personally recommend not getting too specific with testing and witch hunting until you’ve tried serious refeeding.
http://www.youreatopia.com/blog/2011/9/14/i-need-how-many-calories.html
If you do not have the apatite to eat, enzymes and betaine hcl may help. You may find just EATING helps improve your apatite.
Copper Deficiency, and its relationship to Zinc
Some also find that zinc, which is known to help regulate apatite, helps them eat more as well. But be careful, since nerve pathologies can be induced by copper deficiency. So, I STRONGLY recommend, in light of your symptoms, to supplement copper with zinc.
http://www.ajnr.org/content/27/10/2112.full
http://ajcn.nutrition.org/content/88/3/855S.full
http://www.ncbi.nlm.nih.gov/pubmed/15762288
IF you wanted to test for copper deficiency (which I have a feeling may be involved in the nerve damage effects of anorexia), you would need to know the following:
Most common low copper manifestations in blood:Low neutrophils (neutropenia)
Low blood cerulopslamin
Low blood copper
High blood ferritinI am not necessarily suggesting testing these, but if you had previous blood work over the past handful of years, it may be beneficial to re-analyze these tests.
If your diet has been high in zinc (supplemental and/or high in ruminant muscle meat) and low in copper (low in liver, supplements) then you may have induced a relative copper deficiency with such high zinc. I think the modern interpretation of a ‘paleo’ diet is asking for this. I think something like 15-20 mg zinc and 3-5 mg copper supplemental would be a worthy experiment. One ounce of beef liver is about 3-4 mg copper. So, if you eat a lot of liver, forget the copper supplement. And if you eat a whole bunch of muscle meat, forget the zinc. Oysters typically have a good amount of both.
I hope these thoughts help you some. I have had severely debilitating fibromyalgia and a concomitant ‘chronic fatigue’ (and other things) the past 3 years. I cannot imagine any more suffering. Your years of struggle are as hellish as can be. But let’s see if you can beat this! Please keep us updated on your thoughts/progress/new information/questions.
Thank you for your in depth and thoughtful reply Celticphoenix — many good points, some which I’ve looked into, but perhaps not seriously enough.
Yes, I think in hindsight, my worsening during the last 4 years or so is due not only to a ‘partial methylation block’ supplement protocol (all the rage in the CFS community for the last 6 years or so) which made my anxiety/irritability/and thus cortisol/adrenalin go crazy, worsening the muscle catabolism that showed up on a ‘NutrEval’ test from late 2010, but due to the fat intolerance issue which was kind of coming and going but is worse now — I’m sure that because I can’t eat much fat, that I’m no doubt not getting enough calories — which is probably causing me to break down more muscle for fuel, and reducing my ‘energy’ BIG time. !!!
And good points about the copper/zinc issue. I was diagnosed back in late 2011 with a ‘hidden’ copper toxicity. Although I’m a little skeptical of the diagnosis, I did do a ‘zinc tally’ test, where one takes some liquid zinc, and if it has a strong metallic taste, then that suggests zinc sufficiency, but if there is no taste, then that supposedly means one is zinc deficient. My sister tasted it — and got the metallic taste instantly?but it just tasted like water to me.
And I was taking both a zinc/copper supp at times, and also a copper-only supp at times prior to this (probably six months to a year before) and it _seemed_ like when I took the copper only, my anxiety went sky-high. So that’s kind of how I ended up with the copper toxicity specialist. I haven’t done the zinc tally test in over a year, so will try to get that again, but it was pricey. And I do go to my medicaid doc on thursday, so I’ll ask if they can test for copper, ceruoloplasmin and neutropenia. Medicaid docs are pretty worthless, but who knows?may be pleasantly surprised.
Also, I’m going to ask about antibodies to parasites. My last two stool tests came back negative, but those buggers can be in the liver, pancreas, heart, etc., so will see how receptive he is to that.
I have been taking the betaine HCL (8 per meal!) and also digestive enzymes?and still stomach and gut motility is slow. Some say there are enteroviruses in the stomach, and that the vagus nerve can be infected (which influences stomach acid production) so I could ask the doc about that too.
Lastly, about a month back an herbalist friend in the UK suggested I take NADH to help with my poor krebs cycle results (also from 2-3 years ago). (I got so caught up in all the methylation stuff, and didn’t quite understand the importance of the krebs cycle, that I kind of put that aside.) But after reading more from Ben Lynch and others, they say if one is really sick, to fix the krebs stuff first, then proceed to methylation.
So I got the NADH?hadn’t noticed very much of a difference, but was told to add niacin (its precursor) in higher doses. I was perhaps too cautious, as it wasn’t until last night that I got a ‘niacin flush’ — face got all hot, ears were burning (and bright red!), but I felt oddly a little better for a couple hours, and my sinuses cleared up quite a bit (something i haven’t mentioned, but has been no doubt interfering with digestion due to post nasal drip for years, and perhaps spreading the infection to other parts of my gut/body).
So complicated. But have read that niacin is very helpful not only for lowering adrenalin levels, but also for raising good cholesterol, lowering the bad, and lowering elevated triglycerides. Mine were quite high after six months of eating more sugar?but maybe they would’ve been fine had I been taking niacin.
I’m sorry to hear you’re dealing with fibromyalgia and CFS, but good to hear (as odd as it sounds) that it’s “only” been three years. I was doing “okay”, relatively speaking, until about 4-5 years ago. I could walk sometimes a mile every other day, sometimes 2 miles, maybe once a month. But ever since starting the methylation stuff (b12, different types of folates), and also I think I had/have salicylate and possibly other food intolerances/allergiesI went downhill.
I don’t have fibro?at least not officiallly?but have felt like my FEET have it — that’s where I have that acidic like pain, and have found that vitamin E and also krill oil (and anything that helps circulation helps), but like all of us here, I would kill to get off of all these supplements and just be able to eat like everyone else!
A hamburger with all the trimmings, pizza, ravioli, mashed potatoes?!
Thanks again,
Dan
Hey Dan,
I can understand something of your run-around. I’ve been diagnosed with a variety of things by a variety of doctors (traditional allopathic, environmental medicine allopathic, and naturopathic), and I’ve completed various blood and stool tests by each one. It’s no fun!
While often well-intentioned, I also think that 99+% of doctors are absolute imbeciles, and they tend to flail around for ‘the cause’ within the confines of their own myopic world view. It’s hard as a unique case since the medical system cares nothing for the one individual who contracts the oddball pathogen or is exposed to the rare environmental toxin, and society at large couldn’t care less about the one in a million who dies a slow terrible death from the un-diagnosed or improperly diagnosed. The system is set up, at best, to help the masses with the common ailments, and then to do enough random ‘superhero’ work on the side to attract more money and allegiance.
I did want to point out a couple thoughts on what you said, but I’ll say right off, as you already know, nothing is obvious with health problems.
Nutrient Balance:
As you have experienced with copper and zinc, there is a proper balance that must be achieved in order to function optimally. I suspect it’s a lot like vitamins A, D, and K2 as Masterjohn has discussed at length on this various blogs, that the more you have with copper and zinc, the less the exact ratio matters. But overall a number of things can lead to malabsorption and poor retention of copper and zinc, so we ca end up with lowish levels of both, even if we supplement. This makes the supplementation more tricky and potentially dangerous, since a relative surplus (even if only momentary) can cause ad relative deficiency in the other and it can make sue feel like garbage. I think it is wise of you to just monitor with symptoms your situation and supplement wisely (with humble doses) as needed.
I am not sure what to make of the zinc tally test. I really don’t think zinc status is easily measured, and I wouldn’t put much weight in the test either way. I think symptoms are a better guide. I tested low for zinc and high in cooper on the spectracell comprehensive nutrition panel, and I ‘tested’ low in zinc based on the zinc tally. But then when I did a blood test for neutrophils, cerulopasmin, ferritin, blood copper, and some other things, I was clinically deficient in copper. At this time, whenever I would supplement zinc, I would get a sore throat within a day or two, and it would go away upon stopping the zinc supplementation. Supplementing copper had mild benefits in energy. My point is simply that the test are potentially misleading, so follow your symptoms.
Methylation Protocol and Balance:
I know Ben Lynch has commented about this before, but the factors, folate, B12, B2, niacin (B3), B6, magnesium, choline, and glycine must all be in balance. Too much folate in absolute or relative terms can cause a myriad of problems for someone already prone to issues.
http://mthfr.net/methylfolate-taking-too-much-a-problem/2012/01/08/
I generally think the methylfolate supplementation thing is misguided. Let me expalin. Surely, synthetic folic acid is bad news, and people are starting to come out about how the biologically equivalent folates (including 5mthf) are the only reasonable supplemental folate molecules. The problem is that this perspective is piled on top of the already-well-established assumption that we are all deficient in folate and need to supplement (especially pregnant women). Research showing decreased neural tube defects in children from women supplementing folate is what caused this all, and so our cereals are now all fortified with rather high levels of folic acid. The problem is that, as more recent research points to, other nutrients are as important if not moreso than folate in preventing neural tube defects (for one example, see http://www.ncbi.nlm.nih.gov/pubmed/19593156), and it completely ignores anthropology. If you examine the levels of certain nutrients that our ancestors would have consumed–such as folate which only comes in decent amounts from liver, eggs, leafy greens, beans/peas, and citrus–I find it hard-pressed to think we could have had more than 300-500 mg daily. And within this dietary context, our dietary folate would have been accompanied by lots of b2, b3, b6, b12, choline, and magnesium.
I know I felt wretched when I was supplementing even a balanced b complex with activated everything including folate (swanson’s http://www.swansonvitamins.com/swanson-ultra-high-potency-activated-b-complex-high-bioavailability-60-veg-caps?csi=SW1073&csp=SWU533). I stopped supplementing it and felt better. I then experimented and found I, too, felt better with the supplement if I added a separate niacin supplement.
I think the best approach is just to eat lots of real food, follow cravings, try to avoid fortifications but don’t be too religious about it, and go from there. I eat lots of fruit, potatoes, peas, eggs, and liver. I will crave liver for several days, then not crave it for a couple weeks. I’m not a big fan of eating my own liver, so I put the money down to buy the liver sausages from US Wellness Meats. I’ve done well just following my instincts. Of course, I still have issues, but I’ve read the same from others.
Betaine HCl and Enzymes
The last thing I wanted to mention is your betaine hcl supplementation. I have found, off and on, that betaine hcl really helps me. But I think 8 caps per meal is too high. I know there are protocols out there that recommend this, but I don’t think it is based on anything. The stomach tries to separate our incoming food into 100ml units, or so. Not all of our stomach is acidic, only the deep pits, which should have a pH of 1.5-2.0 or so. One betaince hcl capsule, at least according to a prior post on I think Melissa Mcewen’s blog, puts 100ml of water to a pH of about 1.5.
Two Caps would put 1 entire liter (1000mL) of water under 2.0 pH. So even a large meal would only require 2 betaine hcl caps to have enough acid. Ideally, one at the beginning and one in the middle-end. The problem with more than this is that it requires more alkaline from the intestines (after the stomach) to neutralize this acid. Potassium Bicarb is the base used, which could result in lost potassium and/or bicarb and/or CO2 from the blood, which will acidify your blood, slow your metabolism, give muscle spasms (such as restless legs), and potentially any number of other things.
This relates to fat intolerance, since fat digestion requires an alkaline environment (and enzymes). The fat doesn’t digest super well until the alkaline intestines. If, however, you take too much acid, and if your digestion is not robust enough to fully counter the acid, your dietary fat will not digest well. This is why people with poor metabolism often (though not always) do well with fruit/sugar, since simple sugars don’t need acid like protein or alkaline like fat and starch. I am not saying this is causing your leg issues, but it may be (or at least contributing to them). Increasing alkaline minerals from fruit and tubers and decreasing betaine hcl dosage somewhat may help balance this.
If you still have poor motility and/or generally bad digestion (many of us here have this), it, again, may just be overall sluggish metabolism which takes time to come up. In recovering anorexics, I’ve read of many who finally broke the sluggish digestion at about the year mark of refeeding, so it can take a while. Digestion is very parasympathetic, so any stressor (low calories, not enough sleep, sucky work, whatever) will really screw your digestion up. Just do what you can in the meantime, but do consider lowering your betaine hcl dosage.
I’d be curious to know how many calories you’ve been getting down the past while. Depending on your work and exercise schedule (and age and size and so on), you likely need 3,000-4,000+. This is very hard for someone without good digestion, but bumping up your cals may also be the way to get better digestion, so do your best. Resting as much as possible (and not working out) will also likely help.
I wish you the best, Dan. Please do continue to keep us all updated on your progress!
Hello again,
I’m in complete agreement w/you re doctors, especially allopathic, but also some naturopaths as well. At least the latter in general are trying to address the cause(s) of conditions, but many of them can get locked into certain dogma or protocols, so one needs to (unfortunately) do a lot of research, get second opinions, etc., which is hard when one is destitute (i.e., on medicaid).
Interesting thoughts about the zinc tally test. I’m not sure if you meant you tested high when you did the zinc tally (instead of low), but again, a good example of needing to have more testing to really get answers?and even then, who knows?
I had the Spectracell test done about 2 years ago (already), and was kind of disappointed/puzzled. Even though I hadn’t taken any vitamin C in years (I thought it was giving me tingling and numbness in my toes, but was probably something that would’ve helped that), the Spectracell test showed my “C” levels were perfectly normal, and my glutathione was high (I suspect it was oxidized glutathione?) and so my “Immunidex” index was at 90 — which they said suggested strong cell-mediated immune function, even though my condition/symptoms suggest the exact opposite. !!!??
Most of the “Bs” were borderline or just above, except for b12 which was high, so at least that seemed to reflect intake.
Interestingly, I just noticed my ‘choline’ came back almost ‘high’, which is also interesting, considering I haven’t been able to tolerate eggs for years?but it might also explain why choline supps make me more anxious, tense.
Anyway, on that test, my zinc was indeed officially low, and copper was high. ???
Re the betaine HCL: When it was first prescribed years ago, I was told to start with 1-2 caps, and then increase by one cap until I felt a warmth in my stomach, and then back off by one cap. At one point years ago, it took NINE caps to feel any warmth. I’ve been varying it from 6-8 caps, depending on the meal size, and also if I’m taking cal/mag or not. I get what you’re saying, but it’s my understanding that the bicarbonate won’t be released unless the stomach acid levels are high?but maybe I’ve misread that. I have found that taking some sodium bicarb a couple hours after a meal will sometimes help move things along. Maybe that’s because it helps with bile release as well? I don’t know. :)
Re methylation and folic acid — again interesting comments! I did have the methylation panel done about four years ago that showed I was not converting folic acid into the active metabolites well at all, but now in hindsight, I wonder if this is happening — the methylation ‘block’ — for a reason? Maybe the need was for more niacin, etc., — for more krebs cycle stuff? Again, not sure. I did see a quote from Paul Cheney where he basically said the same thing. In the past I haven’t thought too highly of him, as it seems like he needs to be ‘the one with the answers’, not to mention his astronomic fees and low ‘success’ rate, but (gulp!), perhaps he’s correct?
Calories? Because of this fat “intolerance”, and poor digestion/motility/lack of appetite, I’m guessing I probably get about 1600-1800 calories a day, if that. I’m TRYING to increase that, as I know you’re right — I should be getting at least 2500 calories, but it’s so hard. I did gain about 20 lbs a year or so ago as mentioned above, by eating foods with more (whole) sugar — got up to 182lbs (for 6’2″) in six months or so — was totally shocked — but it ended up just around my middle, all fat, and my blood pressure and triglycerides went up way too high. Triglyceride level was 275, after being normal for years?good cholesterol was low.
And just last Thursday, had my appt with the medicaid doc’s RN, and my BP (which had gone down with fish oil, vitamin E, and magnesium) is back up again. Sigh??. :)
So?again, wondering if this all comes back to a long standing niacin deficiency, and also a vitamin C deficiency. I have the scurvy-ish corkscrew hairs on parts of my legs, and the many symptoms of B3 deficiency that Hoffer describes.
Plus?just read last night that one of the causes of achlorhydria can be due to pellegra.
???
Thanks again so much for your thoughtful replies. :)
Dan
p.s. Maybe I should start a new thread on triglycerides…
Forgot to add a couple of links:
Achlorhydria associated with pellegra (niacin deficiency):
http://en.wikipedia.org/wiki/Achlorhydria#Causes
Paul Jaminet’s 25lb weight loss due to scurvy:
http://perfecthealthdiet.com/category/nutrients/vitamin-c/
It doesn’t say how many calories he was consuming, but I’m guessing it was more than 1800! :)
Hey again Dan,
I just saw your message. I wanted to give a word or two about a couple things you said that sparked my attention this moment, but I’ll also keep in touch later about some other things that I want to mull over and see if I have anything else to write with further preparation.
Triglycerides and HDL-C:
Trigs are typically quite elevated in fat deficient patients (and HDL cholesterol, or HDL-c, rather low). Even in Kitavans, the healthy Polynesians who consume 20% of their calories as fat and 70% as carbs–the majority of those glucose/starch–triglycerides average about 150 mg/dL and HDL-c about 40 mg/dL. These numbers are kind of high and low, respectively. Eating fat of any kind would lower trigs and increase hdl-c (up to a point).
Fructose more so than glucose/starch increases trigs. My point here is that highish trigs and lowish HDL-c MAY only mean that your diet is highish in sugar and lowish in fat, and MAY NOT indicate any real pathology. Of course, many pathologies can also cause this, the most common of which, in my estimate, is hypothyroidsm (such as under eating), which is known to contribute to high trigs.
http://www.ncbi.nlm.nih.gov/pubmed/4341014
Fat Maldigestion
One of the first things that pops into most doctors heads when fat maldigestion comes up is the gallbladder. I don’t like how allopathic docs approach this, but IF you have a clogged bile duct, for instance, you would have pains with meals that could include any number of other weird symptoms (potentially even nerve related issues), and you would be unable to absorb most the fat and fat soluble vitamins you eat. This would lead to MANY deficiencies before long.
I think more likely, your fat digestion issues are just hypothyroidism, which is a known cause of bile excretion problems and the resultant fat maldigestion.
http://www.ncbi.nlm.nih.gov/pubmed/12660641
http://www.ncbi.nlm.nih.gov/pubmed/21086683
Supplementing lipase enzymes and/or the ox bile, as you say you’ve tried should theoretically help if you have a bile duct problem. The note you gave in a previous post about fish oil not seeming to cause the same symptoms as butter or olive oil or anything else is consistent with the fact that more bile is needed to help emulsify fat that is more saturated. Thus, for someone with bile issues, butter will give the most pain/symptoms, followed by olive oil, then (last) high PUFA fish oil or flax oil. I am NOT recommending you guzzle high PUFA oil like flax or fish oil, but am I simply mentioning this for diagnostic purposes. And yes, as a previous post of yours eluded to, various things (parasites, whatever) can theoretically live in the stagnant bile salts within the clogged duct.
You could set up an appointment with a GI allopathic doc (‘gastroenterologist’) and have them do an ultrasound of your liver and gallbladder which, I think, should verify whether or not the duct is clogged. The trouble with this is, that IF it is clogged, they may recommend removing the gallbladder which I WOULD NOT suggest doing. I am frankly unsure what the best course of action is regarding duct problems. Many people like to give input on this, but I am not sure what would be best. Nonetheless, I suppose at least the diagnosis could help narrow the search and focus the plan of action.
Calories
You’re a tall man, Dan. At 6’2″, some would say a recovery effort should involve much more than 2500 kcals. As in 3500+. Even if your bedridden.
http://www.youreatopia.com/blog/2011/9/14/i-need-how-many-calories.html
I know this is very hard to do without an ability to digest fat, but do your best. Easy to digest foods, like dried fruit, honey, rice syrup, whatever. Solving the fat digestion problem should help this part out tremendously.
I am NOT saying that the only hurdle to your perfect health is eating more. I think many people on here have come to believe that our inner anorexia is the cause of all our problems, and I don’t think that is always true. I DO believe, however, that you have many symptoms characteristic of hypothyroidsm/low metabolism AND that you have history of eating/absorbing far too little for the average person of your size. I do NOT think these things are purely coincidental. This does not prove one way or another what the initial CAUSE of your issues are, but I think it’s safe to say that many of us have found ourselves at a point where we are undernourished, and until that singular problem is fixed, nothing else will improve.
One thing I ran into a while back, and can’t locate off the wing right now, is a study showing that the retention of vitamins and minerals during prolonged under eating is poor, and that under eating can cause many micronutrient deficiencies. MANY of these deficiencies were reversed by adding calorie sources with ZERO additional vitamins (such as corn starch and/or cane sugar). The point here is that our body needs calories to help utilize vitamins/minerals, the same as it needs vitamins and minerals to help process calories. But under eating too long can cause deficiencies in things like niacin, zinc, or whatever. Would supplementing these nutrients help? Absolutely! But doing so would also jeopardize the balance they have with other nutrients which may also be low. How this shows up on Spectracell’s test is anybody’s guess.
In sum, I think it would be wise to solve for once and for all the underlying cause of your fat maldigestion. Is one or more bile duct(s) clogged? Can a clog be jarred free? Perhaps thyroid supplementation (t3 or desiccated thyroid) will help re-establish bile flow? Perhaps you know of other strategies to investigate in the event that a clog is diagnosed? And in the meantime, keep eating something. Consider supplementing whatever you think may help, but consider broader supplements over singular items (such as a b complex over straight niacin).
And, as always, keep in touch.
Dan,
I must have been writing the last note as you were writing yours!
I think experimenting with some supplementation is warranted, but I’d be careful about the high dose vitamin C, since it inhibits both zinc and copper absorption. I know Paul Jaminet thinks the approach is low risk, but the devastation of low copper is great. I can’t find some studies I found on this in my computer right now, but some vitamin C supplementers (1,000-2,000 mg daily for a couple years) have induced paralysis due to copper deficiency. Since it would be hard to tell exactly which nutrients you are or are not low in right now (and are likely low in nearly all of them), taking anything that would compete strongly with something else is potentially dangerous.
But do what you think is best! We’re all different snowflakes, as they say, and surely high dose vitamin C has helped many people!
Hello again,
For some odd reason, notification of your last 2 posts went to my spam folder, so apologies for the late reply.
But thanks again for them — I agree w/and appreciate your points. So many possibilities, so many options, NOT ENOUGH knowledgeable docs/naturopaths/etc. :)
I was prescribed Nathryoid (similar to amour I believe) last summer, but have been bad about taking it. I’m going to make an effort to doing so on a regular basis, as you’re correct, that could be playing a big part. I definitely do have low body temps — have had them for years, well, ever since I got ME/CFS, but have always wanted to get to the cause of my hypothyroid-ish issues, instead of taking something for it. But?here I am taking ox bile, and adrenal extract, so why not thyroid? :) Anyway, I started with one tiny pill, and was up to two’then they sort of got lost in the shuffle. I didn’t notice any difference, but no doubt I wasn’t up to the proper dose yet.
You said:
“One thing I ran into a while back, and can’t locate off the wing right now, is a study showing that the retention of vitamins and minerals during prolonged under eating is poor, and that under eating can cause many micronutrient deficiencies. MANY of these deficiencies were reversed by adding calorie sources with ZERO additional vitamins (such as corn starch and/or cane sugar).”
I’d be really curious to see the study/research link to this if you can find it, but please, no huge hurry, and if you can’t find it, I’ll totally understand.
I did find an interesting study quite awhile back that I just realized the other day backs up what Matt has been saying:
http://www.sciencedirect.com/science/article/pii/002604958390063X
“With progressive weight loss, hypothermia recurred and was unresponsive to thiamine therapy. Fortuitously, the patient’s intake of sucrose was abruptly increased, and her body temperature normalized within seven days.”
Interesting?perhaps it fits with what you said as well.
And yes, I’ve been taking thiamine for quite awhile, which has no doubt helped with some aspects of neuropathy, etc., but just like with niacin, it obviously isn’t and can’t be the entire answer.
Thanks again. :)
Hope YOU’RE doing okay?
Hello Dan!
The article you attached reminded me of another article I found a while back about thiamin.
http://www.ncbi.nlm.nih.gov/pubmed/23379830
I’m not generally fond of the idea of ‘pharmacological doses’ of natural substances, just on principle. But the idea is interesting to me. I haven’t ever tried it.
The other thing to consider would be the different forms of B1 in supplements. Thiamin HCl is typical, but that must be phosphorylated to Thiamin ‘pyroposphate’ (TPP) aka ‘diphosphate’ (TDP). Benfotiamine is a synthetic somewhat lipid-soluble version of thiamin, but I don’t like the idea of synthetic/non-natural fat soluble things. Ascorbyl Palmitate, for instance, is known to give people spider veins and burst vessels after some years of use. My understanding is that TPP must be enzymatically dephosphorylated with digestion to even absorb it, before being reabsorbed and then re-phosphorylated in the liver. If this is true, Thiamin HCL would be better than TPP as far as an effective vitamin. In foods, there would be a mix of Thiamin, monophosphate, diphosphate, triphosphate, and whatever else.
I’d be interested in knowing how much thiamin you take and in what form.
My history is a strange one where both I and my roommate came down with weird health issues together, slowly over the course of a few years. Then, we found mycotoxins present in our blood through Real Time Labs, which made us suspect environmental mold toxicity. But moving out and trying to deplete molds with binding agents and sauna therapy didn’t help whatsoever as far as we can tell. Starting to eat more did, though we’re still in poor shape. We both not only lived together but followed similar diets. I suspect mold, years of low carbing, and educational/work stresses may have combined to screw us.
We suffer from fibromyalgia, ‘chronic fatigue’ plus a battery of various ‘autoimmune’ problems. Some of my official diagnoses include undifferentiated spondyloarthropathy, Crohn’s, mixed connective tissue disorder, and rosacea, in addition to more general things like hypothyroidism. I’m sure if I went to a psychiatrist, which I never will, I’d get a slew of additional diagnoses.
I couldn’t help just know looking up (for probably the thousandth time) thiamin on Pauling’s database (something new sets in every time).
http://lpi.oregonstate.edu/infocenter/vitamins/thiamin/
There is mention of ‘Anti-thiamin factors’ that include various foods but also molds.
I’d be interested in knowing if you’ve ever played around with your dosing of various things and what the results were.
Peace, CP
Hi CP,
Again?just found this in my junk folder. Sheesh?not sure why that’s happening, but again many apologies.
It’s too late for me to reply tonight (as we lose an hour of “sleep”) but will try to reply in the next couple of days?probably/hopefully by Monday night. Definitely have a lot of info on thiamine and all those anti-thiamine factors, plus a cool video that links mold/algae to thiamine deficiency in sharks who were dying, basically becoming paralyzed (I think it was sharks?maybe other fish too). But they gave them high-dose thiamine, and all recovered.
Will ‘talk’ soon. :)
Hey DannyJ,
Nothing profound here, just a thought.
I wanted to mention something quick about betaine. This is not related to the HCl portion, but just the betaine. Tri-methyl-glycine (betaine) is a very strong methyl donor and taking many betaine caps could result in over-methylation especially within the context of low other b vitamins. B1, B2, B3, B6, pantothenate, and biotin, and whatever else.
It may be worthwhile experimenting going off betaine HCl and trying some apple cider vinegar caps (ACV), instead.
Something like:
http://www.iherb.com/Now-Foods-Apple-Cider-Vinegar-High-Potency-450-mg-180-Capsules/358
ACV is not as acidic as betaine HCl, but it has a decent amount of acid, and many people do well with it. But it also doesn’t have so much methylation potential! So I figured it worth an experiment.
My gawd?can’t believe another week has flown by?again my apologies.
(I guess I’ve got to add 180degreehealth to my ‘contacts’ in my email program, as I didn’t get either of your replies after my brief one.)
Starting from the last reply: I’ve read conflicting info re the betaine in betaine HCL being the same as tri-methyl-glycine — some say yes, others say no. But I have wondered about that’so I appreciate your bringing up the point again.
I can’t tolerate much vinegar lately, but have been using some potassium chloride (as I’m definitely not getting enough potassium in my diet). I know this is the ‘eat everything’ site, and Matt has described potassium as the ‘anti-salt’, but the RDA is pretty high’so I wonder if I’m getting enough. I’d be curious if you’ve added up your potassium intake?
Anyway, the chloride in that seems to help somewhat with increasing acid levels, so I’ve tried to cut back on the betaine HCL. Then I’m hoping the niacin will also help increase stomach acid?but as mentioned above, it could be due to other things like thiamine, zinc, etc., etc.. :)
Here’s the link to the story about alligators (not sharks, sorry) and how blue-green algae took over, and how thiamine saved their lives:
And yes, there are so many anti-thiamine factors, or ‘thiaminase’ compounds, many of them common, that inactivate thiamine. Sulfites, phenols, acetylaldehyde, many herbs, spices, arsenic, etc.. I’ve been taking some benfotiamine, but also have found a sublingual ‘active’ form of thiamine that seems to make a difference (made by Source Naturals).
I’m sorry to hear of your various health issues. Regarding mold, did you go to the point of discarding your belongings, and starting from scratch? I’m not recommending that, but some have said one needs to do that to ‘get clear’ and detox, but it seems to me that that just makes them a lot more sensitive to future exposures.
I better shut up for now, but thanks again so much for your input and for your patience as well.
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