Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Supplement intolerance?

Discussion in 'Hypersensitivity and Intolerance' started by douglasmich, Mar 24, 2016.

  1. Gondwanaland

    Gondwanaland Senior Member

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    I think @ahmo knows something about it
    This could be thyroid stimulation / low B2
     
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  2. ahmo

    ahmo Senior Member

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    @Kathevans I had DC in both hands, over about 25 years, plus a small plantar nodule. I'd had needle procedures on both hands, very helpful. Within 2 weeks of eliminating gluten and dairy, the remaining holdings in both hands melted. It would be a rare person who would now see or feel my hands and notice anything odd, except for the deformed finger I acted too slowly save.
     
    Last edited: Apr 5, 2016
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  3. Crux

    Crux Senior Member

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  4. JaimeS

    JaimeS Senior Member

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    Yeah, I've heard it called this as well. :)

    We are all trying our best in a sea of information, some of it useful, some of it useless, drying to sort the gold from the dross. I, for one, appreciate any and all efforts to do so!

    -J
     
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  5. JaimeS

    JaimeS Senior Member

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    Me too! I was trying a combo of raw honey, coconut oil, and... something... (ME brain!) for deeper sleep and I had that symptom. I thought it might be the raw honey and a bit of an immune challenge... but when it settled back down, I slept really deeply.

    This is low FMN? Do we have evidence of it? Why would low FMN produce this response to coconut oil? @Gondwanaland -- why would coconut oil have thyroid effects?

    -J
     
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  6. Kathevans

    Kathevans Senior Member

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    Thanks @ahmo I knew you'd had issues with Dupytrens; as it happens I also have a plantar nodule. Hmmmm. But I've been religiously off gluten for over 7 years now, unless gluten-free oatmeal is a problem (and I've never thought it was so). As to dairy, I've been mostly off it, but added it back in a couple of months ago, along with coconut water, to raise my potassium levels.

    Just out of curiosity, had you begun your FMN therapy prior to the 'release' of your fascia? Or only the removal of gluten and dairy?

    As it is, speaking of supplement intolerance, I've developed quite a case of indigestion over the past couple of weeks. Who knows what it is: the B2? the dairy? stress levels? the higher carbs I've been eating--allowing myself a piece of fruit each day, usually with the yogurt.

    Oh my.

    Actually, I thought at the time that it had to do with just this. Good thought! Or with a challenge to whatever dysbiosis has existed in my stomach since I took zantac for 8 years just before I got sick... Unfortunately for me, once that cat was out of the bag, my heart didn't settle right back down. I had to really resist doctors' desire to ablate my heart...sizzle...! :nervous:

    Fortunately I'm pretty stubborn. And willing to put up with a lot of discomfort, inconvenience and all those, l let's face it, kind of heroic qualities we never thought we'd have to muster.
     
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  7. Gondwanaland

    Gondwanaland Senior Member

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    Honey is usually high in Boron, so it is dopaminergic. At the same time, it improves calcium metabolism, so this might be why you slept better afterwards.
    As a thermogenic food, coconut oil speeds up the metabolism (I don't know the mechanism of thermogenic foods - methyl donors?), so faster metabolism relies on thyroid for more energy and it is directly geared with B2-FMN-FAD which activates B12 etc etc...
    GF oatmeal = wheat inside my body :ill: (triggers autoimmunity)
    I need dairy (no milk) for calcium and lysine
    It could be a higher need for B1 and B3 for generating stomach acid, and/or low thyroid (note that too high a dose of B1 and/or B3 can crash the thyroid, B2 as well if low Selenium)
    It has probably impaired your B12 and iron absorption (and pretty much all minerals for that matter - I was on omeprazole/pantoprazole for years as well - dropped gluten and never had a heartburn again).
     
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  8. Kathevans

    Kathevans Senior Member

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    Wow! That was fast and smart @Gondwanaland ! So maybe the oatmeal is a problem for the Dupytrens. It isn't the reason for my indigestion, though, as I've eaten it for years without a problem till now. I do eat sauerkraut and have a bit of fresh lemon juice in water with my meals and that's been a great boon.

    And the one thing that seems to be ok is my thyroid! All thyroid tests exactly mid-range, though eating 3 Brazil nuts/day (selenium ok in very recent SpectraCell Nutrient Test). B1 and B3 also well into the 'normal' range. B2 a little lower, but all this makes me wonder what any of these tests mean. Do we need to supply some of our snps with more of their cofactors to help us get around them, so to speak?

    In the end I have to say I'm looking at your approach, which seems to be fewer supps, more natural food... How much folate and thiamine are you taking now and do they help with your inflammation?

    The two Bs that tested a bit low for me are Pantothenate and Biotin, both in the 'borderline' area.
     
  9. ahmo

    ahmo Senior Member

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    I only added FMN years later. And yes, @Gondwanaland = :nerd:!

    Before detox and FMN, I was not tolerating coconut oil. I put it down to sulfites used to treat dried coconut, but that might be inaccurate. I'm now using it again, no problems.

    Here's a list/article re gluten cross-reactive. Read and weep; I certainly did when I first saw it.:aghhh: And of course, there might be different factors for each of us.

    http://www.thepaleomom.com/2013/03/...re-eating-gluten-even-after-giving-it-up.html

    http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods
     
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  10. Gondwanaland

    Gondwanaland Senior Member

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    I do not take folate. I took Mfolate for less than a week in 2014 and it caused me metabolic acidosis, it took me months to recover until I found out what exactly hit me. I actually never needed it, since my blood levels have always been optimal (upper third of range). I might have lacked co-factors (esp. choline) but now I get them in food.
    I only take Thiamine occasionally for constipation. One needs very good iron levels in order to take Thiamine long-term. It is not my case.

    My current favorite anti-inflammatory is roast chicken wings with skin (Glycine + B3 + Choline) and dried herbs (esp Thyme high in Iron and Chromium). I should probably be making broth, will do, winter is coming. EDITED TO ADD + 15 min sunbathing daily
    Right now I am tending to my 3x +/+ SNPs in the Transferrin gene, boy do I need IRON :eek:! Iron is the only supplement I am taking right now. After loading it up I plan to take some B1 and Biotin.

    I found out that egg yolks contain phosvitin, which binds iron making it unavailable to the body, and I am sensitive to it.

    Plus I have been eating high oxalates, but am careful to eat my oxalates at breakfast with dairy and lemon juice, then at lunch no oxalates and no dairy, just meat, vegetables, greens and more lemon juice and my iron supp. Sweet potatoes at dinner (thin slices) are high Ox but also high Mn and B6, which lower histamines and make me sleep well.

    I have been drinking lemon juice 1-2x daily for almost a year and it seems to support a higher oxalate diet. However, I think that the cause to oxalate sensitivity is anemia - since oxalates bind not only calcium but also iron, it gets a positive feedback (the more iron it binds, the more intolerant to oxalates you get) also causing a malfunctioning of the B compl vits.

    Nowadays I see vitamin deficiencies as a consequence of hyperinsulinemia which causes inflammation and depletes vits and minerals. Minding the carbs is very important.

    I took a number of supplemnts that were really helpful (and a larger number that made me worse), without which I would never have made it with diet alone (e.g. Mg, silica, glutamine, B12, Boron, Mn, Ca). Interestingly I could only tolerate them short term, and was unable to repeat experiences. Never felt great benefits from B vits in isolation (b12 worked for only a couple of days).
    It apparently needs well functioning methyl donors (e.g. choline). I have just recently reintroduced it (~2 weeks) and loving it again after 2 years off of it. I have been loading choline + B2 (in eggs) for one year.
    Interestingly I tolerate well (but not continuously) some foods from those lists. I think that glutamine, B6 and Mn help a lot with that. The main problem in common with those foods is in lectins which cause leaky gut. Add banana to that list for me :rolleyes:
     
    Last edited: Apr 5, 2016
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  11. Kathevans

    Kathevans Senior Member

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    Oh my. Well, that explains a lot for me. When I did an adrenal saliva test a little over a year ago, it showed a 'mild intolerance or reactivity to gliadin Ab, SIgA. Borderline was 13-15, I was 18. It said that patients on a gluten-free diet who have not been exposed to gluten for 3 months or more should have a negative SIgA response to gliadin.

    So there you are. Proof at the very least that I'm reacting to something or somethings on those lists. I'm weeping a little bit here... :cry: So long, so conscientious, and to no avail. Or maybe some. Maybe I'd be worse.

    But there you are ahmo, with your excellent results for getting it right. I'll have to run the experiment and see how it goes. (Unfortunately, I just ate some organic non GMO popcorn after dinner.... this isn't going to be easy!)

    @Gondwanaland I recall you, too have oxalate issues. I hadn't known the lemon juice helped out in that arena, but glad to know that. Lemon juice and olive oil are my go-to salad dressing.

    As to your low reliance on supps, I'm a little jealous. Though I have to say that as I've increased the B2, I've found that I tolerate/need little or no folate myself and it's possible I can also lower my MeB12. I'm just testing the ground as I move forward--and with each step hope I don't sink!

    I'm coming from a place of high reliance on B-Complex and it may be that my body is used to them. I'm taking far less now than I was a little over a year ago. Maybe I'm slowly weaning myself. I can wish! :rolleyes:

    Meanwhile, I'm going to study your post!
     
    Last edited: Apr 5, 2016
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  12. Gondwanaland

    Gondwanaland Senior Member

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    I just had to cope without them, they hate me :devil: I have dozens of supp jars from which I took only a fraction of a single capsule. :bang-head:
    I tried to stop eating eggs for a while and it was a disaster. But now I have successfully reduced from 2 to 1 daily. Since I don't eat liver I think I will have to keep it for enough choline daily, despite the adverse effect on my iron bioavailbility.
    You will have to be a bit more strict with your diet. No it isn't easy :rolleyes: :hug:
    My advice is to focus on finding your sweet spot for macronutrient balance, without insulin spikes and without low glycemia either (easier said than done).
     
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  13. ahmo

    ahmo Senior Member

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    @Kathevans After I'd eliminated everything on those lists, I was still having some persistent symptoms. Then I heard one of the thyroid experts refer to cornstarch in T3 medication. I quit the one I'd been using, switched to compounded capsules, and the symptoms stopped. Your test results are very unfortunate, but maybe you'll be able to shift things now.:hug:
     
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  14. Kathevans

    Kathevans Senior Member

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    @ahmo Very helpful, those lists. I do recall years ago a naturopath I went to did blood tests for a list of over a hundred foods. I believe it measured IgA, and in any case, let you know how reactive you were to each particular food. I'll have to see if I can dig that out. Though of course everything may well have changed at this point.

    I will do an elimination diet and then see if I can figure out what's what. Cornstarch, of course, I use that to thicken sauces. Or at least I did! Who cares if the sauce is thick?

    At least we have the symptoms to lead us forward...
     
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  15. Kathevans

    Kathevans Senior Member

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    @ahmo do you know if sweet potatoes are considered 'potato' on the list of gluten cross-reactivity foods? I have managed to stop all of them for one day in a row...! But if I don't have to give up the occasional sweet potato, that would be splendid.
     
  16. ahmo

    ahmo Senior Member

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    Sweet potatoes seem to be a different thing. I'm about to eat one tonight. :)
     
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  17. JaimeS

    JaimeS Senior Member

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    Hello past me and anyone else searching this thread for information!

    That was probably the honey -- I've since learned that spikes in blood sugar cause spikes in BP in everyone, and in an ME/CFS patient's delicate little ANS, it can be dramatic.

    -J
     
  18. Gondwanaland

    Gondwanaland Senior Member

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    Are you aware of its connection with gout/uric acid deposition in joints?
    I have recently had a bad reaction to honey and it was due to the purines in it (joint pain). Additionally, uric acid and fructose share the same transporter and some SNPs make some people more prone to problems with it (e.g. diabetes, gout etc).

    Kath, the problem with coconut oil is the salicylates, they stirr up urates. We then need alkalizing substances to escort them out (potassium, citrate). Salicylate sensitivity it helped by B5 (I think because it helps with lipid/phenols breakdown).
     
  19. Kathevans

    Kathevans Senior Member

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    I hadn't been, no. I re-did the NutrEval Test recently, but it doesn't seem to deal with issues of uric acid. I've been trying for months to pull back on supps and work on some of the cofactors like molybdenum, and selenium and copper, and find that now I am low or borderline in most B vitamins--B3, B6, B1, B2, B9 and B12. The odd thing is I was taking 50+mg/day of the B2 and 1 squirt of day of the B12 oils when these two came in as 'High Need'. This was disturbing, I have to say. folate was in that same 'high need' column.

    In any case, I've been titrating up the folic acid again, not trusting to all the folate I get in my diet and the Dupytrens seems to react specifically to folate dosing. If I try to pull back, my hands ache, if I increase, I feel nary a twinge. But this time around the folate is making me extremely tired--quite likely the high need that I've developed. Or at least I hope. It would be nice if the exhaustion I feel would lessen as I refill those particular tanks.

    It just seems if it isn't one thing, it's another.

    And as to salicylates, I don't think I have a problem with them. Though at this point I don't use that much coconut oil--maybe a teaspoon a day or so. Red wine used to bother me; I'd get a stuffy nose. Though this wasn't the only reaction. It went straight to my head. But now that seems to have abated. Also interestingly, though I'm now taking higher levels of B2--100+mg (I get another 20mg in my B-Minus Multi; and was taking 1 Source Naturals Sublingual B2 as FMN till it went out of stock at most places recently), my potassium levels remain about the same 2-3 270mg doses/day. So, somewhere near 1,000mg/day. I know right away if I need potassium as my heart beats irregularly and the K+ resolves it in a minute. Interestingly, the B-Minus has a relatively high dose of B5, I believe, Pantothenic Acid, right? at 150mg per tablet.
     
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  20. Gondwanaland

    Gondwanaland Senior Member

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    I suppose that if you were to have any issues the B5 got you covered.
     
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