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puddleduck’s progress (CFS symptoms)

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@sarabeth-matilsky B Vitamin supplements feed pathogens, same with ATP and coq10, basically anything that creates energy will feed pathogens too. Hence why your body downregulates energy/ATP production when it has pathogens. So I think the b vits feed something bad like bad bacteria or fungi and bang you now have acne.

When one’s body has low ATP production due to the body downregulating production to protect itself from present pathogens. It causes a lot of important biochemical pathways to go down/offline and then you end up with issues like inability to metabolise Vit A, Oxalate and other issues.

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JennypuddleduckPJAndrew BViktor2Joe2
Quote from AlexM on May 19, 2023, 10:27 am

@puddleduck Oxalate intolerance is from high yeast, fungi, low ATP and b12 and mineral deficiencies. The idea oxalate is toxic is wrong, it’s just the metabolism for oxalates isn’t working properly. I used to have bad oxalate overload and intolerance. After doing coffee enemas for a few months I can eat high oxalate foods now regularly with no issues, my guess is because the enemas cleared yeast and fungi out of my system.

Here is some detailed info by Dr Amy Yasko on oxalates:

“A number of programs and tests focus on high oxalic acid, also called oxalate. In my program, the issue of high oxalate is integrated into my larger concern about overall biochemical balance. Aside from diet, there are a number of factors that may contribute to high oxalate levels. A determination if the trigger is, for example, high yeast or fungi, a lack of B12, or low ATP, is made through interpretation of testing. The reason for the high oxalate then guides your decisions as to how you address the problem. High oxalate may be due to yeast and fungal infestation. These factors can be investigated with a CSA test and GI Test, among others. Several chapters in this book contain suggestions for what to do when these issues are found.High oxalate can also be caused by low B12. Low B12 makes the Krebs cycle run in a reverse direction, which increases oxalate. Check cobalt levels on a UEE and HMT. Lithium transports B12 into your cells. Be sure that lithium is in balance with these two tests as well. The Krebs cycle is the energy/ATP generating portion of the mitochondria in your cells. Your level of B12 impacts enzymes in the Krebs cycle, and the levels of Krebs intermediates are affected. Adequate levels of B12 increase fumarate reductase, which then aids in processing oxalate and fumarate (Kurumada and Labbe Science Vol 151 page 1228).Conversely, lack of B12 leads to increases in citrate lyase and succinate dehydrogenase (Frenkel et al JBC Vol 251 page 2147). The net effect of these enzymatic changes is to increase oxalate and fumarate levels. While fumarate is generally converted to malate, it may happen that when fumarate levels are high enough, some of it is converted to tartarate. Feedback inhibition by high oxalate in addition to high fumarate may control the flow into malate, such that fumarate and oxalate are converted to tartarate. The pathway that leads to formation of tartarate from oxalate has been defined (Nakamura and Ogata, JBC Vol 248 page528 and Shreeve and Meuter JBC Vol 239 page 729), as has as the path from fumarate to tartarate (Kuni and Hernandez JBC page 201 and Finkle JBC page 349).Conditions of B12 deficiency, coming either as a result of mutations in the methylation cycle, and/or by high level depletion of B12 through endurance training or sports, can lead to increased levels of tartarate, fumarate, and oxalate. High levels of tartarate in the absence of high arabinose, or high levels of fumarate, should lead you to consider supplementing with multiple forms and routes of B12. This includes chewable hydroxyl, adenosyl, and methyl B12. The relative amounts depend on your Nutrigenomics.

If you have high oxalate levels, you should consider increasing your B12 support for an additional reason. Relative B12 deficiency increases the conversion of citrate to oxalate via citrate lyase. Consider Lactoferrin, Vitamin K, Pantothenic Acid, Riboflavin-5-Phosphate, Curcumin, Benfotiamine, and GSH to increase the flow from pyruvate through citrate and onto isocitrate as another way to decrease high oxalate. The use of MitoForce may also support this conversion.

High leucine in the absence of high valine or isoleucine can occur secondary to low phosphate. This can also cause increases in oxalate, so check to determine if leucine is high on a UAA. If so, consider ATP and Riboflavin-5-Phosphate to support phosphate.

High oxalate may also be due to excess glycine secondary to SHMT + or excess iron. Glycine can be checked on a UAA, and iron levels are on a UEE and HMT. As discussed in the UAA chapter, high glycine can be addressed with supports for SHMT.

If threonine is high on a UAA test, this may be an indication of high oxalic acid.

High levels of oxalates may increase ACE activity. The use of anxiety support and progesterone may be helpful. (Umekawa et al J. Am Soc Nephrol Vol 15, 2004).

High levels of citrate or high levels of the intermediates that precede acetyl CoA on the MAP diagram, i.e., pyruvate, lactate, etc., may be an indirect indication of high oxalate, as the cycle is not incorporating at 11:00 (oxalate) well enough to be moving around to 1:00 (citrate) properly.

Also, a build up at 1:00 (citrate) may be causing a backup in the cycle, which may be an indirect indication of high oxalate. Consider MitoForce or Lactoferrin, Vitamin K, Riboflavin-5-Phosphate, Pantothenic Acid, and Benfotiamine to get the portion of the cycle from 11:00 to 1:00 moving.

Those who are ACAT + may also have problems converting nutrients from food into the Krebs energy cycle, and the use of ACAT/BHMT capsules may be a help in this regard.

Research articles illustrate a relationship between B12 and ATP which seems to present a catch 22. ATP, the fuel generated by your body to drive its biochemical reactions, is created by your Krebs energy cycle. The Krebs cycle needs B12 in order to function optimally. If your Krebs cycle is not functioning optimally, ATP production is reduced. Yet, ATP is needed to transport B12 into your cells. However, lithium also plays a role in B12 transport, so lithium levels should be checked and supported as needed. MitoForce or ATP, NADH, Vitamin E succinate, and Malic Acid also play a role in B12 transport and may be supplemented as needed.

High levels of sulfur in your system can have a negative impact on the regeneration of ATP and NADH. This may be a particular issue for those who are SUOX + – or CBS ++. MitoForce or ATP, NADH, Vitamin E succinate, and Malic Acid help to regenerate these important intermediates also.

The supplements suggested for consideration to reduce high oxalate depend upon its cause. If low B12 is the issue, consider a source of low dose lithium, such as All in One and/or BeCalm Spray, in addition to B12 itself.”

Hmm. It’s definitely possible, but I don’t have symptoms of candida overgrowth otherwise and was already consuming lots of “candida fuel,” which didn’t trigger anything like this reaction prior to the eggsperiment... The only way to know for sure is testing, of course.

I have done many anti-candida diets and anti-candia-herbs and anti-candida probiotics in my life so far...When I was bipolar, I took lithium and progesterone (and thyroid hormone), too. I wish I never took the hormones (there are side effects to this day lol). The lithium was fine, but not something I’d be comfortable taking long-term or now that I’m in remission.

So I’ve kinda “been there, done that,” insofar as Dr. Amy’s recommendations.

And I’ve never had a B12 deficiency, ever. Oxalates aren’t something I usually react to noticeably, either.

But I appreciate your taking the time to grab me the information from Dr. Amy, and for sharing your thoughts with me. 🙂  You got me thinking in a better direction, and your perspective here on the forums is valuable. Thank you.

Biotin Reaction Update

I’m not going to rule out the microbiome factor, whether or not candida is the exact issue there or not. It is common for CFS/ME patients to have dysbiosis of some sort. That’s just something kinda overwhelming for me to try and guess on my own, and so I’ll have to decide if the expense of testing and working with a professional is worth it since my funds are limited.

Even though what you were saying about the B12 and oxalate connection makes sense for many, in my case it doesn’t seem to apply seeing as I was consuming more B12 than usual by adding eggs to my daily beef meal. Same deal for the carnivores who—despite a high B12 intake—sometimes report getting oxalate dumping for years (ironically while mocking other extreme dieters for mistaking nutrient deficiencies for prolonged “detox”), which seems like a bad sign to me.

Chris Masterjohn’s recent article offers an explanation for this (you’ve probably seen it):

https://chrismasterjohnphd.substack.com/p/can-b12-and-folate-help-detoxify

So, it appears my limiting factor triggered on the eggsperiment was something else...And I’ve gotta think part of it is that I simply don’t tolerate dietary retinol (Masterjohn thinks maybe I have a genetic defect limiting aldehyde dehydrogenese enzymes). Could also be that the eggs impaired my iron absorption, gave me way too much choline for my genetic needs (I could try a choline supplement to test that idea), and/or temporarily interfered with B12..somehow?

Strangely enough, after a month on a mostly vegan diet (to give my microbiome a break after all those eggs), I tried dosing biotin again. And nothing happened. If anything, my remaining “oxalate dumping” rash improved a little.

I will be repeating the biotin supplement pulse again next week to see if that holds for me.

Anyway, my idea right now: I’m a classic over-methylator (never have responded well to anti-histamines or methylated vitamins), and my current high-folate, high-B6, higher glycine and arginine diet is supporting those weaknesses.

https://butternutrition.com/signs-of-overmethylation/

Anyway, I no longer feel avoiding oxalate is the answer (though like, I am going to continue to avoid spinach and sweet potatoes and carrots because “ew!” and also “why?” 😝 )

Thanks again for your thoughts, Alex! 😎☀️ 

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Hi @puddleduck 😊. I take it your plant based diet is going well?

In regards to carnivores and nutritional deficiencies, I actually got B12 deficient (and iron deficient, as in all 3 samples not just HB) on keto, eating almost exclusively animal products. How about that? 😂👏. 

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Ah @liz, it’s good to hear from you! 😊 I hope you are well recovered from the car accident, and that your kidneys are on the mend. I feel badly you’re dealing with a blockage. Sending prayers your way. 💛

Well isn’t that something... 😯 I guess I shouldn’t make assumptions then, about who has what deficiencies based upon their diet. You must’ve been baffled! And how frustrating, too, when going to all that effort to eat an extra nutrient-dense diet... Remarkable how little we collectively know about nutrition and how our individual needs affect things.

I’ve learned since my last entry that the B12 in eggs might not be all that absorbable (for some reason, according to Chris Masterjohn), so maybe my B12 intake wasn’t higher on the eggsperiment after all... 😂 The things we don’t know...

Yeah, being plant based is going pretty well—feeling “chill” overall. But the only thing I’ve done consistently so far (still trying to learn stuff through badly designed short-term self-experiments 😆) is eat 1/2 cup freshly ground flaxseed every day for plant-based omega 3s. That amount seems to be awesome for my hormones, which makes me think I’d developed a bit of an omega 3 deficiency. Wish I hadn’t neglected to remember to take a bit of flaxseed daily for a year or so there... 🙃 Important nutrient, that! Especially since I tended to avoid fish because it would cause a mild but clear “retinol reaction.”

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LizJoe2

No recovery yet, but not losing hope. And thank you so much for your prayers. Never undereatimate the Power og prayers 🙏  I am Waiting for and MR scan and a big endo surgery (my 3rd). I am beginning to think it's psychosomatic because literally nothing has helped, not even hardcore hormone treatment so the doctors are baffled as well. When I ate Grant diet and was really strict about it, all grew back within a year after surgery which was so unexpected since I truly believed low A diet was the solution I had been waiting for.. I have began working with my trauma and I feel it is helping, so time will tell...

Yeah how little we know, every dogmatic diet out there believe theirs is the best and most nutrient dense 😂. I was also D deficient at one point which shocked me because I got more than enough D from my diet and from the sun summertime, until I learned A is an antagonist of D. Then it made sense...

We had a diet show on TV a few years back called the perfect diet, where 4 families were to follow 4 different diets under guidelines of an expert: LCHF, vegan, 5:2 fasting and recommended guidelines. They were followed up with blood samples and weight and other markers.  Common denolinator for all groups were they all ate way more veggies than before, except for LCHF who focused on butter. 3 groups improved most markers except LCHF whose cholesterol went to shit. But what surprised me was that B12 in all 4 groups went down... Go figure.

I am So glad flax works for you. I really wish I could take flax, but it makes me bleed, also lignan free oil is a trigger (and I have a mirena), so my endo cannot handle it. I do eat a handfull of walnuts and sunflower seeds daily. I believe they have helped, it seems one of my ruined former blu nails is starting to heal and it has been whacked since 2008. I am excited about that... 😊

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@liz I am reading Norman Doidge’s “The Brain’s Way of Healing” right now (having read his earlier book “The Brain That Changes Itself” some years ago), about how neuroplasticity can be used to heal certain health conditions. Not sure how or if it applies to everyone dealing with chronic illness, but I do wonder about the brain body connection, too...and yeah, working on trauma is helpful, imo. 👍 

I still very much believe too much vitamin A throws everything out of whack, though I’m trying not to get overly dogmatic about it or any other ideas I am reading about right now...I currently think one of the mistakes I have made so far was assuming all dietary fats are “neutral” or even “beneficial” calories, instead of trying to understand the nuances better. Your posts about saturated fats got me interested in digging deeper into that, so thank you!

Doing a quick search through PubMed for “endometriosis” and “omega 3” did result in some interesting studies, this one especially:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3769312/ 

And this review was interesting, too:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10058497/

Dietary saturated fats, especially Palmitic Acid, seemed to present a problem for women with endometriosis... I’ve been noticing similar connections in other inflammatory disease states I’ve read about so far, with Aracadonic Acid (particularly when higher than EPA) and Palmitic Acid being especially pro-inflammatory...so I am now wondering if the AA and PA were part of the problem I had with the eggs, too! 😅 

Apparently many women with endometriosis report bleeding after taking flaxseed... And yet cod liver oil is a disaster...But at least there are walnuts!

There are no simple answers here. 😤 As evidenced by everyone on that TV show you saw having lowered B12! That’s just the kind of perfect irony I ought to expect by now...

I would like to understand better the effect omega 6 and omega 3 have on conversion of beta carotene into other forms of vitamin A. If the scientists know...So much is unknown, it seems.

We’re getting there, though! Learning and healing bit by bit.

It is super exciting to hear about your nail! Don’t fingers and toes usually take forever to repair? It is a good sign. 😊

I hope the MR scan and your 3rd surgery go well...But it’s too bad it feels like nothing is making a difference in that area. It’s a confusing puzzle, because it seems like the oxalate dumping and fiber help you feel better, but how do you know when the endometriosis will respond, if it does? Or if it will temporarily flare up in response to “detox?” I guess Karen Hurd says it’s supposed to just go away on her protocol? I wish there was something obvious being missed that would help.

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DonaldJoe2

In my case it is quite simple: when it stops growing back, endo is improving. My case apprently is so severe, it was discussed at an international Endo convention. Of all the things I could be famous for... 🙄

Macrophages should be cleaning up the endo, but they don't. There is a fairly recent study on it, theorizing Endo as a faulty immune system. I have literally vacumed pubmed on endo studies. I don't care anymore, which is truly liberating in itself, it is what it is. I am convinced in my case It's psychosomatic so no matter what I do, it will have no effect, until I deal with my trauma..

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puddleduckJoe2

That makes total sense, @liz. I’m sorry for going on about nutrition study stuff...

When you first wrote about how much tissue you had removed last time, I was shocked by the severity. I’m sorry it has grown back again badly enough for more surgery. That isn’t your fault, of course I’m sure you know this... I dunno why, but sometimes feeling blame is easier than feeling grief, at least for me.

It’s such an exhausting and painful experience, to deal with trauma, but so worthwhile. I hope you have the time and space and emotional safety and support to “go there” for a while, and that you find what you seek.

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LizJoe2

You said something there Puddleduck. Blame instead og grief. Oh how many of us take on blame and carry an unreasonable burden, instead of allowing oneself to grief? A very important key to letting go...

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Since I’m approaching the 5-year mark of participation as a voluntary “test subject” for Grant’s hypothesis (I stopped eating liver in August 2018 after reading Matt Stone’s “Vitamin or Villain” article, and dramatically lowered my vitamin A intake in December 2018), I had been conflicted about whether or not to continue...

a) Should I persist as I have been for another 5 years?

b) Should I try to resume a more “normal” omnivorous diet (with dairy and eggs)?    Tried it, felt like sh*t.

c) Should I change up what I’m doing to see what I can learn about the detox process? 👈 ✔️

It can be enormously stressful to base major decisions off of “good guesses,” because what it boils down to is how little we really know about all of this so far...

Matt Stone said it well in a comment thread on his blog:

“As for not knowing, I assure you that those who are sure about nutrition are definitely wrong. That’s the only thing to be sure about when it comes to nutrition.”

I cannot answer the following questions with certainty:

  1. Do I suspect vitamin A is a poison? Yes, it did poison me, after all.
  2. Or do I believe retinoic acid is necessary for the body to function properly, and therefore vitamin A deficiency is a dangerous state in need of remedy? No, but I am often wrong.
  3. What about choline deficiency? There is a suboptimal intake, but how do we know what is optimal for us and in which contexts? Some with genetic methylation challenges seem to need more than the average person.
  4. How does oxalate toxicity relate to chronic hypervitaminosis A? Detoxification of both requires abundant nutrition.
  5. Are cold-pressed, plant-based omega 6 and omega 3 oils beneficial or harmful? What about added saturated and monounsaturated fats? Or added oils in general? Oh boy...

All I have to go on is my gut feeling and logic based upon limited and highly suspect data, which I call: “a good guess.”

Even answers to the following personal questions, though I might have preferred guesses, remain unknown:

  • Do I have cholestasis? I doubt it, but since it can be asymptomatic how would anyone know?
  • Is my liver still saturated with vitamin A? Ehh, after all this time? Sigh...maybe some.
  • Are my ovaries “golden” from accumulated carotenoids? Well, I did have excessively heavy periods during the eggsperiment.
  • What about my brain? Mostly not “inflammation sensation city” anymore, thankfully, but my CFS/POTS is still triggered if I “push it” too far. Some could still be stored there.

What I Think I Know

I can at least conclude that I don’t believe my remaining symptoms are due to a vitamin A deficiency! So there’s that. Gonna have to continue with this low-vitamin-A thing a while longer...

And while I don’t have the financial resources to purchase genetic testing right now, I suspect I am an over-methylator based upon my poor reaction to eggs, lack of response to anti-histamines, and intolerance for methylated multi-B vitamin supplements.

As I have already shared in previous posts, my health has improved greatly since lowering my vitamin A intake. Over the past year, especially, I have noticed happy childhood memories and neglected elements of my personality returning to me...

I feel all of us arrive on this planet with seeds of potential when we are born, which grow and blossom into our unique combination of virtues and gifts as we are nurtured...and learn...and develop into our own unique garden self. But when I became poisoned as a teenager, it was as if there were parts of the garden so badly damaged, I couldn’t go there. So stinging nettle overtook the paths...it was too overwhelming and painful to venture down them.

But now that the poison is clearing, I’m able to explore and care for the entire garden again, and somehow I have the tools to pick the nettle safely and brew tea from it.

This physical process of lowering the poison in my body has given me the freedom to begin to regain empowerment in other areas of my life, and it feels good.

🏃‍♀️ The Importance of Movement 💃🏼 

It has only been a year since I have been physically capable of exercise on a regular basis again! (After 16 years, which was half my life at the time, it has been a remarkable change.) Almost every day I go on a walk outside, and in summertime I make sure to sunbathe at the beach as often as possible. 

In the book on neuroplasticity I mentioned to Liz above, Norman Doidge talks about how important movement is to the brain’s ability to learn and grow in general. I believe my increased ability to engage in movement may have been the reason for the increase in memories returning to me over this past year. 😊

📺 🚫 Going Screen Free

Inspired by Jenny’s dedication to increasing her calm, I’m planning to take a complete screen break for the entire month of August and to spend ZERO time researching nutrition. So if you message me, I’ll be sure to get back to you in sometime in Autumn. 😎

🛑 TRIGGER WARNING = If you have a history involving a restrictive eating disorder, you might want to avoid the rest of this update. I really don’t want to negatively influence anyone who struggles with restriction. I absolutely believe Andrew B is right about extra choline from eggs or elsewhere being essential for some of us us, and that it is important everyone meets their individual need for it.

Unintentionally contributing to someone else’s anxiety by sharing my observations and perspective is the last thing I’d want. Please do your own research and follow your own intuition, not me. Everyone has different goals, levels of wellness, and genetic weaknesses to contend with, and mine might differ from yours, so...Reader beware! ⚠️  

💀 🥚 Eggsperiment Epilogue: Mindset Shift

I wasn’t eager to repeat the 8-egg-biotin-burst, or to eat eggs again, so I mostly didn’t.

Over a month ago now, I had 2 eggs in homemade gluten-free pasta with some raw milk parmesan cheese and olive oil. This combination triggered a night sweat (I quit taking inositol in May 2023; as a result I have a clear biological “alarm system” 😆) and that horrid CFS inflammatory “burning” sensation in my head for around 24 hours after consumption, even though my total intake of vitamin A that day was maybe around 50% to 60% of the RDA for women (which is 700 mcg).

I also got super irritable, cried more than normal, and was generally kinda anxious...

It took a little under a week for all that emotional upheaval to go back to normal. When I felt good again, I remembered just how awful I had felt during the eggsperiment. With mental health issues, hindsight from a place of stability always brings clarity, and those three months were rough. As I have stated elsewhere on the forum, my CFS/POTS flared up in a big way, too, hampering my ability to exercise during that time. And I had bad anxiety, which I don’t normally.

Even so, it was a valuable learning experience, which led to a major mindset-shift. Ever since I started lowering my vitamin A intake, I’ve felt someday I’ll get to the point where I’ll recover from chronic hypervitaminosis A and be able to return to a fairly “normal,” albeit vitamin-A-restricted diet (at around 500 mcg of Retinol Activity Equivalents).

Now? I believe “vitamin A” is a poison, which possibly has value as a hormetic, but has clear toxic effects at high doses. It follows, then, that animal-based retinoic acid and retinyl esters are the most immediately poisonous, as the mechanisms limiting conversion of carotenoids into those animal-forms should—when working correctly under ideal circumstances—prevent the body from being overwhelmed by an excess. I know many have formed the opposite conclusion, which is an equally valid possibility. The context of the diet as a whole matters a great deal, and excess consumption of carrot juices devoid of fiber clearly present as much of a concern as organ meats do. I also feel excess dietary fats and oils may dysregulate the gut microbiome, interfering with the protective mechanisms designed to prevent excess absorption and conversion.

Vitamin A is too poisonous and too slowly detoxed for me to want to return to the typical western diet, which is harming so many. In Canada we have a 40% lifetime cancer risk irrespective of family history, and tragically I have lost many family members too young to that cruel disease... 

I’d like to develop some way of eating low-vitamin A that is more nutrient-dense for long-term maintenance.

New Goal: A Sustainable, Low-Vitamin A Diet (for Me)

Here’s another excerpt from Matt Stone’s comment thread musings:

  1. A low A diet seems woefully deficient in a lot of nutrients, especially my version. I get like 80+% of my calories from white sugar, white flour, oils, and white rice. Chicken and potatoes can only go so far in making up for that deficit. I think more care in crafting a truly nutritionally sustainable long-term low-A diet is probably needed. My calcium intake, for one, has been pathetic.
  2. Being low in Vitamin A probably opens up the body to become a huge mineral sponge for the first time in ages. One way to look at it is that, with low vitamin A levels, you probably don’t need as many minerals because your body can make more efficient use of them (have you seen Grant’s recent blood tests after 5 years vitamin-A free? His vitamin D levels are off the charts!). But another way to look at it could be that it’s an opportune time to remineralize. I spent my first year on a low-A diet with the former mentality, but that calcium experiment kind of has me curious about the latter.

When I read this, it summarized my feelings about my own approach when I started out on my “junk-food” version of Grant’s diet, and where I want to go in the future.

It’s clear I wasn’t getting enough calcium, thiamine, vitamin C, vitamin K1, or omega 3 the first few years of on my low-vitamin A diet, so I am now emphasizing those nutrients and focusing on optimizing my current diet with an open-minded results-oriented approach. Whatever improves my digestion, appetite, sleep, energy levels, metabolism (body heat), hormonal/menstrual health, metal focus, and mood stays. Whatever worsens those things goes.

Towards that goal, I have experimented a bit...

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