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puddleduck’s progress (CFS symptoms)
Saw this on a certain doctor's site last night and it reminded me of Jenny's situation. I wonder what causes situations like this.
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I just thought of something amusing, in parallel to your eggsperiment: when I added eggs back into my family's diet in January, my toddler got "pickier." Toddler's digestion is the tippiest of all of us at this point (definitely reacts to dairy and pork), but I hesitate to push him to eat because....well, Our History. I also really want to broader our diet to avoid deficiencies etc. I do not want my kids overdoing sweet things or fruit, and I encourage protein...and then I try to stay calm. 🙂 Anyway, the funny thing I just realized is that the toddler has been doing an eggsperiment too: often will eat 2-4 eggs per day (asks for an "omelette," which is just scrambled eggs with salt cooked in tallow in omelette shape, no cheese), and 2-5 frozen bananas, which is something no one else in the family loves so much...
I'm curious to hear future updates. 🙂
Quote from Armin on May 12, 2023, 5:52 amSaw this on a certain doctor's site last night and it reminded me of Jenny's situation. I wonder what causes situations like this.
The second testimony is heartbreaking. The woman actually divorced her husband to focus on her health? That sounds like a really bad plan, now she's missing the emotional support of her husband. Maybe that was lacking in her marriage? As someone who values marriage, it pains me to hear stories like this. Especially since she says she hasn't gotten better in years, instead of getting better. Something is clearly missing. I bet it's not so much copper, but a lack of choline. At least that's the understanding I'm getting since I started replenishing my own choline stores. Most of the time I'm really lazy, reading novels for hours instead of doing hose work on weekends, not going out much. But as I said in another thread, it feels good. And today I was brave enough to talk to two women, one of whom actually smiled at me. Oh, when was the last time that happened? Are these all small signs that I'm getting healthier? I think so. I hope to have more small successes to report 🙂
@armin I wonder if what Jenny describes here is the problem: https://ggenereux.blog/discussion/topic/thiamine-story/?part=8#postid-22523
@alexm Your response made me laugh, because everyone in the network was telling the individual in question their problem was too much copper! 🤭 To me, it sounds like it could be an oxalate problem (see Jenny's comment linked above).
@christian If you can appreciate the gross-out humor of 14-year-old boys, you'll like "Idiocracy." (I think it's a good movie, whatever that says about my intelligence...haha. 😂) But yeah, I love dystopian films, and it is the one somehow hits home the most (maybe because Aldric Hama is onto something, though perhaps lowered EQ in those raised by television and smart phone apps may be a factor, too).
Congrats on making a lady smile, man! 😊 Getting healthier (which you totally are) feels good, eh? 😁
@sarabeth-matilsky You posts had me in stitches! 🤣 Thanks for that, Sarabeth. 😂 It is adorable your toddler is doing the banana version of the eggsperiment haha! Too cute! (Should be exceeding the RDA of B6, for sure. 🙂)
Ahhh, I'm not sure if I did know you were unschooled too?! I knew from your newsletters you homeschool your kids, but I don't remember if I knew it was a 2nd generation thing. That's so awesome! 😎
Getting banned from a forum for the "crime" of helping your kid feel better is less awesome. I think I kinda get where they were coming from, because I was in a self-righteously disempowered mindset at one point, too. (This was mainly because I had failed so many times in my attempts to recover my health that I felt I needed to practice radical acceptance, which wasn't all bad, I guess.) But yeah, it's hilariously ironic that "radical acceptance" and "anti-ableism" can be turned into a controlling and preachy ideology, which seems to revel in victimization. 😖 I do cringe at some of what I said back when I was in that subculture, lol.
One of my favorite homeschooler forums ever was run by crunchy vegan moms, who believed in "gentle christian mothering" (a.k.a. attachment parenting). I lurked there when I was a teenager, mostly to read theological arguments against the ideology of a sexist religious subculture some of my homeschooled peers' parents were following and promoting at the time... (I was unschooled in Canada's "Bible Belt.")
Biotin Update: It's Oxalate, Bruh!
To get back to a baseline, I waited 9 days (during which I consumed no eggs) for my joint pain to clear up before trying the pure biotin. My digestion was practically perfect that entire time (eating a mostly vegan, legume-heavy, super high-fruit diet), and my brain fog had cleared dramatically. Even my big rash was healing, and the second one had disappeared.
On day 10, I opened a 1,000 μg biotin capsule (brand Now) and took a small portion of it every morning for three days. (Yes, I did continue eating the 5-bananas-a-day, too, haha.)
While my symptoms weren't as dramatic as with the eggs (I hadn't noticed my bottle of Now biotin had expired until the last day; perhaps the biotin lost some potency?), the same bad stuff happened:
- the big rash got puffy and itchy again
- the brain fog was back
- I felt mildly disoriented
- my hands, feet, ankles and elbows ached
- the scar tissue on my finger and my head and teeth weren't as badly affected as last time, but they started hurting on and off
- my lungs were irritated, so I coughed more
- I noticed acne on my jawline, even though I haven't eaten any dairy whatsoever this month
- severe constipation was back like a flash (barely any type 1 or none)
Well whaddaya know?
For the Record: Addressing Other Possible Issues with Eggs
Egg White Allergy - I ate a dozen coconut macaroons over the holidays with no ill effects (interestingly enough, the egg yolk contains most of the biotin). I'm not allergic to eggs.
Sulfur Sensitivity - I've eaten cabbage, onions, and garlic almost every day since going low-vitamin A. I'm not sensitive to sulfur. (However, increasing it may have enhanced the oxalate-clearing effect of the biotin, since I hear there's a hypothesis sulfur may push oxalate out of the cell?)
Retinol or Lutein Toxicity - I'd like to find out for sure if this is still a factor for me or not before proceeding with any more eggsperimentations.
As we discussed in one of @lil-chick's threads on feeding laying hens, commercial eggs may contain questionable additives: https://ggenereux.blog/discussion/topic/goat-milk-sheep-milk-pondering/?part=3#postid-8019
I was eating the cheapest eggs from the grocery store, which mightn't have been the best option.
Twelve days without eggs, and I'm feeling way better than I was on them... I'm not closing the door to the possibility I can figure out how to make eggs work for me, but I am going to continue to pause them for now.
The Next Experiments: Am I Really Still Sensitive to Retinol and/or Carotenoids? And How to Deal with Oxalate Dumping?
Now that I know oxalate is a significant factor for me, I want to question some of my prior conclusions.
Even though I am open to the possibility of vitamin A being a plant toxin and nothing more, I cannot help but feel somewhat warry about potential deficiency. Considering Grant is still doing fine, it seems unlikely any of us could've achieved a genuine deficiency at this point.
Still, with the fertility issues some women in the network are seeing, I have to ask the question... What if vitamin A is like iron? Too much will literally kill you, we know that. But what if we do need a certain amount of it?
Anyway, over the next few months I am going to try a few more experiments on myself in an attempt to answer the following questions:
1. How do I manage oxalate dumping while consuming biotin? Can I figure out how to alleviate the constipation? (I'm thinking I'll repeat the biotin supplement experiment, but take potassium chloride, magnesium citrate, and calcium citrate, consume more apple cider vinegar and citrus fruits, increase thiamine intake, and do some sulfate and baking soda soaks; basically all the stuff Elliot Overton suggests here: https://youtu.be/SB5YwYjK-q4)
2. Am I still sensitive to retinol? (I'm thinking I'll go on a major cheese or butter binge for three days...will have to research which is lowest in biotin. Liver is out because it is super, duper high in biotin. Also, no. Gross.)
3. Am I still sensitive to carotenoids? (I'm thinking I'll eat a bunch of acorn squash for three days, or whatever fruit or vegetable is highest in pro-vitamin A, while still being fairly low in oxalate and biotin, if that's even possible...lol. I'll look into it)
I have other, even more complicated questions, too...goshdarnit! But I'm going to start with these three.
Even though it's a bit discouraging to realize I still have oxalate issues after nearly 5 years doing this, it is super helpful to know for sure I'm dealing with that specifically, and to have biotin as a dumping-trigger-tool. 😁 Maybe this means more answers will be found! 🤞🙏 I wanna stay open to looking for them, and not get stuck in a dogmatic mindset (even about the oxalate thing).
I have many more thoughts but SO many strawberries in my garden to pick, so really quick...such fascinating experiments, @puddleduck! Just yesterday, one of my kids asked, "Why can't we drink more milk? Let's find some raw milk to get!" Well, I said, we can get some once we move, but it's really high in Vitamin A and so it would probably be good to go super easy on it. "But then why do you give it to the baby?" my child persisted. What do you mean? I asked. None of us drink milk! "But the baby nurses," my child pointed out. Well...but this is cows' milk, I reminded my child, but also thought, I'm sure human milk is high in vitamin A to, to an extent....
The reasons I have thought that this might be the case is that perhaps the vitamin A helps maintain a Baby's immune response/connection with Mama: vitamin A keeps that stomach lining loose and much more permeable than an adult's, allowing for the immune modulation that comes with Mama's milk...? I dunno...I wonder how that works with a toddler nursing, since ideally the gut lining becomes a lot MORE impermeable with age, yet extended breastfeeding seems important... And maybe there are other biological uses for vitamin A?
A few thoughts, back to strawberries...
@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.”
@puddleduck I just read your post properly now, do you know Biotin feeds Candida and causes it to grow rapidly, because of this having Candida or Fungal issues also causes a biotin deficiency at the same time. So my guess is you likely have Candida or fungal issues which is why the biotin makes you feel bad, then candida/fungal issues will cause oxalate intolerance and then also Vitamin A intolerance because Candida produces lots of acetylaldehyde which burdens ALDH and ADH. So either there is too much strain on ALDH & ADH to metabolise Vit A from Candida, or the enzymes are inhibited because of the candida.
The biotin feeding Candida info is stuff I’ve heard many times in the CFS community.
That is interesting, @alexm, about the connection between B12 and oxalates (although, gosh, those are a LOT of supplements to consider - I cannot imagine getting better if I ever have to juggle so many ever again!!)...I personally can't figure out the oxalate thing, nor whether anyone in my family is really sensitive to them, or how to test (although @puddleduck, you seem to be getting close to having a manual!) for them.
When I tried supplementing B12 last fall (my levels are still low even after four years VA detox), I noticed really good results: my hair started growing longer, my varicose veins improved, and a couple other things were markedly good. BUT, within 24 hours beginning supplements, I broke out in painful cystic acne. After three months, I had to abandon the experiment due to Personal Vanity. Within days of ceasing B12 (I had even reduced to like 1/4 of a pill each morning), the acne was gone. Oxalates? Other B vitamin deficiencies?? ????????
Sure wish a B Complex would be The Answer. Would be so easy!!!
Anyway, just thinking aloud...