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Constipation Etc.
@puddleduck I agree re Dr Myhill, her work helped me to some degree but I don't like all of her advice. I hadn't noticed the VA in the multivit. I wouldn't have thought anything of it in the past. Not sure if I took that or not - I likely did. I followed her protocol for a couple of years around 2008. I also don't like that she has iron in the mineral mix she uses. Another thing that mean't nothing to me at the time but now having been diagnosed with haemochromatosis and learning more about that, I disagree with recommending iron without checking peoples iron status first. Still I made some progress with her and there was some helpful stuff mixed in with her advice.
I'm also taking B2 and B3. I do take thiamine once a week but would probably benefit from taking more if I could take it without issues 🙁
I'm pretty sensitive to sunlight. I come out in a rash - polymorphic light eruption. I've been like this since a young child. My vit D status has been poor in the past. Not sure what it is now since it's been a while since I tested. I stopped taking vit D a few years ago when I started reading negative things about it. I avoided the sun as much as possible last year but might try some careful exposure this year. I was thinking of start this late March once the sun is high enough. I'm in the UK so that will involve braving the cold.
I'm quite encouraged by the biotin - just keeping my fingers crossed that it is responsible for the improvement in my nose and that it will do the same for my gut. I've been wondering if biotin deficiency has been a big part in my lack of gut healing. Would be good if that was the case.
Quote from Rachel on February 14, 2020, 7:03 am@puddleduck I agree re Dr Myhill, her work helped me to some degree but I don't like all of her advice. I hadn't noticed the VA in the multivit. I wouldn't have thought anything of it in the past. Not sure if I took that or not - I likely did. I followed her protocol for a couple of years around 2008. I also don't like that she has iron in the mineral mix she uses. Another thing that mean't nothing to me at the time but now having been diagnosed with haemochromatosis and learning more about that, I disagree with recommending iron without checking peoples iron status first. Still I made some progress with her and there was some helpful stuff mixed in with her advice.
I'm also taking B2 and B3. I do take thiamine once a week but would probably benefit from taking more if I could take it without issues
I'm pretty sensitive to sunlight. I come out in a rash - polymorphic light eruption. I've been like this since a young child. My vit D status has been poor in the past. Not sure what it is now since it's been a while since I tested. I stopped taking vit D a few years ago when I started reading negative things about it. I avoided the sun as much as possible last year but might try some careful exposure this year. I was thinking of start this late March once the sun is high enough. I'm in the UK so that will involve braving the cold.
I'm quite encouraged by the biotin - just keeping my fingers crossed that it is responsible for the improvement in my nose and that it will do the same for my gut. I've been wondering if biotin deficiency has been a big part in my lack of gut healing. Would be good if that was the case.
Hi Rachel - I was the same regarding D3 supplementation for many years. I'm wondering how's your sleep. The most interesting thing I got from Dr. Gominak was the idea that it is only in deep-sleep that we accomplish repair, which consumes a lot of B-vitamins. After 22 days on her protocol @15,000 IU of D3, split up as 5,000 IU 3x/d, and a B-50 complex (GNC) twice a day, my sleep has vastly improved. My average is only 6.3 hours so far, but I've had four nights of 8.0-8.5 hours and three of 7.0-7.5 hours, which is really amazing for me. These are solid, uninterrupted hours of sleep. She says that what will happen is a normalization, whereby one falls asleep at 10:00 pm and wakes at 6:00 am. I plan to get a wearable device or app that graphs the sleep-cycles and find out how much of mine is deep-sleep. She talked about resolving gut issues in a couple of her video interviews, so I thought I'd pass on my limited experience.
I have a second D3 test coming up, after which I'll be able to calculate an anticipated lower-dose of D3 for the next stretch of the protocol, on my way to 60-80 ng/ml (from a low of 19 ng/ml). She's pretty big on a particular type of D3-test once one is above 40 ng/ml. The cheaper one that is usually done can be off by as much as 20 ng/ml according to her data. Apparently, everybody is different in how fast they get to their optimal level, and some can actually only handle 1,500 IU per day on the protocol or they feel horrible within a week or two. She's had 7,000 neurology patients and has worked through a lot of this on her own personal situation as well as theirs. Her workbook is pretty simple and straight-forward. I have yet to find a B-complex that only contains 100% of the Daily Value, which is what one tapers off to in the latter part of the protocol, some time prior to no B-supplementation at all, once the microbiome is re-established. Some may or may not require B-12 supplementation for life as one exception to that, determined by an initial blood-test. Apparently there are D3-receptors in the hypothalamus I think it was, that are involved in the switching on-and-off of a form of temporary-paralysis in sections of the body as repair is accomplished when it is still.
I had some calf-cramps in the first few days, maybe related to interrupted switching, but those are now gone, knock on wood. I've had them in the past but not lately. Her theory is that the hypothalamus itself has to be repaired, so there's a kind of boot-strap situation going on, as far as I understand it. I may do a sleep-study after the 3-month point, and see if any apnea I may have had is gone or mild. I never had that tested, but I've been informed (smile) over the years that I'm one serious snorer.
I've been asking a lot of the young caregivers where my mother-in-law lives how their sleep is and it's almost universal among them to have really lousy sleep. None of them so far are aware of what their D3-levels are. They have gut issues, headaches, weight problems, weak immune systems, and a bunch of other nagging ailments, no doubt some VA-related. Dr. Gominak says this D3-deficiency is a pretty common problem and that lack of deep-sleep can precede much more serious things, by as long as 20 years. That also rings the VA-bell and it is quite interesting, after all of this VA-toxicity research, to consider how intertwined the two might be. I'm hoping to come up with enough evidence in the literature to show something more than correlation, where one directly exacerbates the other, thinking that there could be compound effects.
Wish you well!!
@ puddleduck - howdy, good to see ya!!
Thanks so much, you guys - this is SO fascinating (I haven't been posting much because life is carrying on a breakneck pace...but I have been thinking about everything I manage to read that you guys post!).
Yes, the CFS/constipation/poor sleep/pain/apnea(/and did I mention fatigue???) situation is one that my family member relates to nearly precisely. I am fascinated by the connection between Vitamin D and B vits, and I read that article with fascination (both articles, actually - the one by the doctor who prescribes bringing up D levels, and that other article about the interplay between D and A and immune function). We have tried B vitamins to no avail, and lots of D supps with no effect - but I am curious about the combination WITH our Low A diet. Maybe things could finally begin to help? Currently this family member is in a Back Pain cycle, with the pain even eclipsing the poor sleep.
@hillcountry, I am curious: are you supplementing anything besides the D and B vits? And does Dr. Gominak publish her protocol, or do you have to buy it?
Thanks again for the brainstorming. It helps more than I can say, and hopefully I will have more data points to contribute soon.
--Sarabeth
Quote from Sarabeth on February 14, 2020, 3:03 pmThanks so much, you guys - this is SO fascinating (I haven't been posting much because life is carrying on a breakneck pace...but I have been thinking about everything I manage to read that you guys post!).
Yes, the CFS/constipation/poor sleep/pain/apnea(/and did I mention fatigue???) situation is one that my family member relates to nearly precisely. I am fascinated by the connection between Vitamin D and B vits, and I read that article with fascination (both articles, actually - the one by the doctor who prescribes bringing up D levels, and that other article about the interplay between D and A and immune function). We have tried B vitamins to no avail, and lots of D supps with no effect - but I am curious about the combination WITH our Low A diet. Maybe things could finally begin to help? Currently this family member is in a Back Pain cycle, with the pain even eclipsing the poor sleep.
@hillcountry, I am curious: are you supplementing anything besides the D and B vits? And does Dr. Gominak publish her protocol, or do you have to buy it?
Thanks again for the brainstorming. It helps more than I can say, and hopefully I will have more data points to contribute soon.
--Sarabeth
Hi Sarabeth - yes, I take magnesium glycinate just before sleep, along with the D3 and B-50 evening-dose. Occasionally, once or twice a week I take some Vit E, taurine, glycine, selenium cruciferate, zinc, Lugol's iodine. Less frequently, herbal and mushroom products.
Dr. Gominak's workbook is $25. It's about 100-pages, but a lot of them are redundant check-lists for each month. The B's and D3 are used therapeutically, so there's a lot of detail on them. Ultimately, no B's supplemented and only seasonal use of D3 or as-needed. She covers quite a number of scenarios and questions, especially in that she's wrote it for a wide-audience and with a special focus on mothers and children. The protocol itself could probably be condensed down to 10-pages or less I think, but the side-line advice is really important too. She really holds your hand throughout. It includes baselines and example calculations regarding D3-doses after each of your first three blood-level tests. There's a tricky part of it later on where you change and test-out Pantothenic Acid levels for some purpose, idr, once you've reached the point where you've dropped the B-50 complex, which has relatively huge amounts of the B's, and you're then only supplementing with 100% of Daily Values. I can tell I'll be re-reading a few portions of it over the next year as I make dosage transitions and when other things come up.
@hillcountry re sleep. I'm pretty good with sleep. When my CFS first became severe sleep used to be a big problem. Getting off to sleep could take hours. The last few years, maybe as many as 5 years it's been good the majority of the time.
Curiously the solution for me was not a medical or alternative medical solution. I really struggle with racing thoughts and get stuck in loops of stressful thoughts. The breakthrough for me was getting an ipod and listening to audio books as I fall asleep. It has to be books I know well and that don't have a suspenseful theme. I listen to Harry Potter a lot. Anyway I pop my ipod on sleep mode and often am asleep within 20 mins. I sometimes wake up to go to the toilet in the night (more so when my gut is inflammed) but apart from that I'm usually asleep by 10pm and wake up around 6am. Sometimes I wake earlier but it's pretty good.
I shall see how things go this summer and if I can manage any sun exposure. It's useful having others experiences on vit D. If I decide to experiment with vit D I shall be looking up that protocol you mention. I'm glad you are getting some benefit on it. Getting good sleep makes such a difference.
@Rachel - used to use HoloSync to knock myself out. I just ran across a thread from December and was going to post the following over there but it makes more sense to put it here. It hit me like a ton of bricks.
Damn, just when ya think ya got a tiger by the tail, ……
Reading the @Dan post from December has me ready to drop the B-supplements and just go with getting my D3-level up. I wasn’t really aware of the extent of those toxicity risks. That was a great job of making the connections to VA-toxicity, really amazing piece of work. Thanks! I’m glad I was rummaging through past posts.
And then there’s the complexity of dosing B’s. Thanks for the additional comments: bludicka, Tim, JAJ, others.
I guess it may take longer to repair things that are queued-up from lack of deep-sleep, if there aren't sufficient quantities of the B's, but that’s OK, since there's no sense in risking the frying-pan to the fire thing and I’m not in any hurry about all of this.
The flip-side of seeing how B-complex formulas are weighted to the mega-dose end of the spectrum, is the almost impossibility of finding only RDA/DV-level products. It makes me wonder if we’re being sort of “allowed” to poison ourselves; or is this is just some crazy, market-driven misunderstanding? How many of these supplements are coming out of the big pharma factories, and how are the mega-doses even allowed by the Feds in the first place?
It’s funny/ironic to think that not only are the supplement aisles right next to the pharmacy in many stores, but that it's likely all those years of bug-a-boo about the Codex Alimentarius conspiracy to take our vitamins away from us was just a marketing-scheme. Pretty soon they’ll be selling prescription-pads to elementary-school graduates and there won't be any need for GP-doctors. Daytime ads on television will tell us all we need to know, with the magazine racks full of confirmation.
@hillcountry I get that B6 should be taken with extreme caution because it is one of the 2 so called nutrients that are considered neuro toxic, but you also think low doses of the other Bs are very risky? Orion is only taking 1mg of thiamin. I'm taking a bit more than that but much less than in a supplement. I've been taking low doses of all the Bs except for B6 by breaking open capsules and making my own blend of B1, B2, B3, B5, B9 and B12 and taking a tiny drop of biotin (1/15th of a dose). That last one I might start just taking once a week since it might have too much still. It seems like I don't have headaches as much so I'll continue with the low doses. It is the only thing that I know of right now to do. Enemas and activated charcoal were helping alot for about a month and then mostly stopped. Enemas will sometimes elliminate a headache but not always. I do think B1 deficiency is a problem for me. I've been reading a thread on phoenixrising about thiamin. Someone wrote in that thread that ultraviolet light destroys B1 and after a vacation to Florida this past summer I've been mostly plagued by all day headaches, insomnia and fatigue. I have a long history with the latter 2 but headaches are somewhat new for me starting shortly before reading about hypervitaminosis A and going on the low A diet. Since then, the headaches have felt different so maybe different things are causing them (vA toxicity sometimes and sometimes B1 deficiency and sometimes both?) One of the causes of B1 deficieny is said to be pharmaceuticals which to me are just toxins. I think bludicka wrote that mercury can deplete B1 too (I had lots of mercury fillings as a child). Could follow that too much of the retinoids and caretenoids could cause a deficiency also? On that phoenixrising thread, one of the posters who is in their 60s had been taking a complex from Japan of B1, B6 and B12 with some other non B nutrients in it too and reported that they were feeling much better. Even issues going back to childhood were improving. Things got really bad for that poster after a stint in the Gulf War (lots of toxin exposure I surmise along with lots of stress, maybe a bad diet, etc...), I won't be trying B6 though in my homemade blend for the foreseeable future though. About 7 to 10 years ago I had tried even minute doses of P-5-P by breaking open capsules but still had worsened insomnia. In order to raise my food intake of B1 I have been eating macadamia nuts for the last couple of months. Besides the Bs I paint Iodine tincture on my skin every other day or so, eat brazil nuts daily for the selenium (my store just started restocking them) and take a molydenum supplement once every few days. These minerals recommended by Orion/RnB protocol to activate the Bs. Magnesium is also supposed to be very important for the B vitamins and I use magnesium oil on my skin most days. I really hope this will help! I might try D3 if this fails. Because D3 is a fat soluable hormone, it seems much less safe to supplement that low doses of the Bs but admit I really don't know for sure.
Quote from romaine on February 15, 2020, 2:55 pm@hillcountry I get that B6 should be taken with extreme caution because it is one of the 2 so called nutrients that are considered neuro toxic, but you also think low doses of the other Bs are very risky? Orion is only taking 1mg of thiamin. I'm taking a bit more than that but much less than in a supplement. I've been taking low doses of all the Bs except for B6 by breaking open capsules and making my own blend of B1, B2, B3, B5, B9 and B12 and taking a tiny drop of biotin (1/15th of a dose). That last one I might start just taking once a week since it might have too much still. It seems like I don't have headaches as much so I'll continue with the low doses. It is the only thing that I know of right now to do. Enemas and activated charcoal were helping alot for about a month and then mostly stopped. Enemas will sometimes elliminate a headache but not always. I do think B1 deficiency is a problem for me. I've been reading a thread on phoenixrising about thiamin. Someone wrote in that thread that ultraviolet light destroys B1 and after a vacation to Florida this past summer I've been mostly plagued by all day headaches, insomnia and fatigue. I have a long history with the latter 2 but headaches are somewhat new for me starting shortly before reading about hypervitaminosis A and going on the low A diet. Since then, the headaches have felt different so maybe different things are causing them (vA toxicity sometimes and sometimes B1 deficiency and sometimes both?) One of the causes of B1 deficieny is said to be pharmaceuticals which to me are just toxins. I think bludicka wrote that mercury can deplete B1 too (I had lots of mercury fillings as a child). Could follow that too much of the retinoids and caretenoids could cause a deficiency also? On that phoenixrising thread, one of the posters who is in their 60s had been taking a complex from Japan of B1, B6 and B12 with some other non B nutrients in it too and reported that they were feeling much better. Even issues going back to childhood were improving. Things got really bad for that poster after a stint in the Gulf War (lots of toxin exposure I surmise along with lots of stress, maybe a bad diet, etc...), I won't be trying B6 though in my homemade blend for the foreseeable future though. About 7 to 10 years ago I had tried even minute doses of P-5-P by breaking open capsules but still had worsened insomnia. In order to raise my food intake of B1 I have been eating macadamia nuts for the last couple of months. Besides the Bs I paint Iodine tincture on my skin every other day or so, eat brazil nuts daily for the selenium (my store just started restocking them) and take a molydenum supplement once every few days. These minerals recommended by Orion/RnB protocol to activate the Bs. Magnesium is also supposed to be very important for the B vitamins and I use magnesium oil on my skin most days. I really hope this will help! I might try D3 if this fails. Because D3 is a fat soluable hormone, it seems much less safe to supplement that low doses of the Bs but admit I really don't know for sure.
@romaine - I'm in self-experimental mode on the B's, so I wouldn't worry about anything I wrote, especially if you're doing low-dose supplementation and finding good results. I was more thinking about the B-50 GNC-brand part of the Dr. Gominak protocol where Thiamine, Riboflavin, Niacin, Pyradoxine Hydrochloride, and Pantothenic Acid are all at 50 milligrams and taken twice daily. It could be that her patients are in bad enough shape that they need that kind of excess therapeutic kick, due to disturbed microbiomes among other things, but just the B6-toxicity angle is troubling enough, at the large-dose in her protocol. I may go with a low-dose B-complex I found that is plant-based, just to be on the safe side of having enough B's to accomplish increased repair, now that I'm getting more deep-sleep. I get overwhelmed sometimes on the details of trying to ensure sufficient nutrients as they pertain to retinoid-detox and my body doesn't give me very clear signals most of the time and I went through much of my life with zero supplements, so all those things play into how and whether I experiment. I am glad that she was convincing about the D3 though, as that has had a noticeable impact in the last month. I'm really curious if getting to optimal on D3 has any positive correlation to my serum retinol number. I'm hoping to drop it by 20 ng/ml this year but maybe it can go down faster than that. I'll be testing it again in 3 months to get a relative snapshot. It would be interesting to know if among the posters on the blog, those with higher D3-levels have a faster detox, or one that is easier or more consistent. The B-vitamin side of the equation is sounding like it's tied to a D3-deficient microbiome. I just re-read Grant's post on Cholesterol and Statins and it's so amazing what he's been able to do on just the simple diet. It gives me a lot of encouragement, in that I tend to overthink things, although that has its own positive results occasionally. Dr. Gominak talks a lot about headaches in her videos. Do you know your D3-level?
There's 220 hits on a PubMed search of "D3 and Hypothalamus" and this 2019 abstract ends with a bang:
https://www.ncbi.nlm.nih.gov/pubmed/31769259
"Conversely, vitamin D deficient mice display reduced explorative behavior, enhanced anxiety, aberrant grooming, submissive social behavior, social neglect and maternal cannibalism. 1,25(OH)2D3 is generated in human brain, and acts on diverse structures including prefrontal cortex, hippocampus, cingulate gyrus, thalamus, hypothalamus, and substantia nigra. In neurons 1,25(OH)2D3 suppresses oxidative stress, inhibits inflammation, provides neuroprotection, down-regulates a variety of inflammatory mediators and up-regulates a wide variety of neurotrophins. Diseases postulated to be favorably modified by 1,25(OH)2D3 include multiple sclerosis, Parkinson´s disease, Alzheimer´s disease, depression, bipolar disorder and schizophrenia. Clearly, substantial additional experimentation is required to fully understand the neuro-psycho-pathophysiological role of 1,25(OH)2D3 and to exploit 1,25(OH)2D3 or related agonists in the treatment of neuro-psychiatric disorders."
@hillcountry I don't know my D3 levels. What I know about D3 supplements is mostly from Dr. Smiths articles on his facebook page over the last 6 years+. When I was a client of his, he recommended D3 through the sun or a lamp. If one can't get outside enough, Smith recommends getting a lamp, such as those for reptiles, and to take nutrients you might be deficient in like magnesium to make vitamin D yourself . I looked into a lamp set up but was too expensive for me at the time. He is against supplemental hormones of any kind except for maybe melatonin because of how powerful they are. To paraphrase him"Give the body what it needs then get out of the way". Then there is the money tied to D supplements and bad research (https://www.nytimes.com/2018/08/18/business/vitamin-d-michael-holick.html). So anyway, it isn't that I don't think D3 isn't important, just concerned about supplementation. All that said, Smith has been way wrong about things before and this might be one that he is also missing the boat on. And maybe for people who are not deficient in magnesium or vitamin k (and others?), D3 supplementation is safe and effective, or also for someone like me that has uncommon problems with sunlight (ultraviolet rays destroying B1 creating deficiency) D3 supplements might be the safer option than sun exposure.
I wish you and everyone else here the best in finding what works for them and if I take some supplemental D3 I'll let you know how it goes.
@sarabeth-matilsky Sounds like your family member is having a rough go! Pain makes it all worse, too. ☹️ I’m making a list of nutrients that might help CFS (and other diseases that affect the brain) in this thread here: https://ggenereux.blog/discussion/topic/repairing-white-matter-of-the-brain/ I haven’t tried everything on the list yet, but I will let you know if anything makes a big difference.
@romaine Good point about the iron! That’s such an individual thing (we are the perfect example of that, as I’m the opposite of you).
Ah, I’m sorry you have such an extreme sunlight sensitivity. I wonder what caused that from such a young age (were you VA toxic way back then, or is it related to something else). But yeah, what you’ve said about sunlight damaging thiamin makes me wonder the same thing about Vitamin D supplements vs sunlight now! 😝 Yes, please do let us know how it goes if you try it. I’ll do the same.
Also keeping my fingers crossed that biotin is the missing piece for you. 🤞
@hillcountry Hey! Good to see you, as well. 😁 I’m glad to hear Dr. Gominak’s protocol has improved your sleep! That’s got to make a big difference. If I have a period of sleeping poorly, my health regresses dramatically. One thing I have noticed starting the thiamin, is that I am dreaming every single night (that’s REM/deep sleep, eh). I’m looking forward to listening to some of Dr. Gominak’s videos today. Hope your improved sleep trend continues!