Help Needed - Normal B12, low everything else

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27
Hi everyone, I hope you are doing well, or are on the path to it.

I've been struggling a lot and I find a lot of advice to be mixed. I think the difficulty is that each of our deficiencies are a little different from the next, so advice isn't perfect.

Every test I've done shows normal B12 (serum, intracellular). B9 has been historically very high, and I think that was due to poor absorption of folic acid.

This CFS, or whatever it is, is notoriously tricky to figure out. I went downhill last year (started as back issues), but by January/February I was starting to have severe fatigue, low body temperature, and muscle pain, many other issues. Stopped going on walks, briefly bedridden. Since then I tried Freddds protocol but had serious psychological issues. I have had anxiety and depression since childhood and his protocol was very hard on me.

I began working with a dietician and have made improvements, but setbacks as well. We tried putting me on a B Complex but I get severe fatigue, depression, body temperature, dry lips, allergies, joint pain, etc. Currently I'm sort of tolerating 1/8th of a B Complex in addition to a multivitamin, iron, and mk-4.

I took a CMA and it shows a lot of impacted nutrition. Before taking the test I had been on high doses of B9, nothing else. After getting off of B9 I got much worse but am afraid to move dosage fast. I had already been worsening before going off the B9

2023CellScienceSystemsCMA.jpg


I didn't tolerate glutamine very well. We held off on BCAAs due to some amino acid urine concerns, but my doctor doesn't understand what it means if anything. Specialists were denied when trying to see if the high amino acid output was a concern.

Currently Dietician wants me to add in more vitamins/minerals before increasing Folate. The concern is that adding Folate might put more pressure on a piece of the methylation process that I'm not supplementing at all, or only at a low dose (biotin, BCAAs). The other thought is to just add each B vitamin 1 by 1 in higher doses and see what causes good and bad reactions.

Freddd has pointed out that not enough Folate or cofactor can lead to my deficiency symptoms. But it is hard to know if it is better to add more cofactors first, or add B9 first.

Any thoughts?
 

JES

Senior Member
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1,372
You'll find that a lot of people in this section have posted about intolerance to B vitamins in general. It seems to be a part of the disease that we are intolerant to drugs/supplements in general. I react very poorly to vitamins B12 and C especially, which is a bit ironic as most consider those very benign to supplement with, but the same rules don't apply for healthy people and those whose bodies are already not functioning anywhere close to normal.

What I suggest you do is try out B vitamins individually to figure out which is causing the problem in the B complex. If you are lucky, they are not all causing problems. B1/B2/B12 and folate are typically the ones I find people here react worse to and B3 (niacin) is the more calming and better tolerated one. Since you have mainly B1 a bit low in your charts, I would try that one first. Biotin or B7 is also low. People have not found it as essential as some other B vitamins, but I reckon one person here had success megadosing biotin.

Otherwise your values look fairly good. Mine were quite a bit worse although all labs are different.
 
Messages
27
You'll find that a lot of people in this section have posted about intolerance to B vitamins in general. It seems to be a part of the disease that we are intolerant to drugs/supplements in general.
It's really unsettling that the "safe" water soluble vitamins cause so many issues.

What I suggest you do is try out B vitamins individually to figure out which is causing the problem in the B complex. If you are lucky, they are not all causing problems.
Thank you for your advice. My dietician was talking about trying one at a time too. Since this has been such a mess I was curious on what those in the trenches (this forum) thought. Vitamin C, Biotin, B1, and Pantothene were the first they mentioned trying. Benefit of vitamin C is that it can also be used to create carnitine (with cofactors).

Biotin because I had heard success like you mentioned. I also read some had success starting BCAAs after working on fixing Biotin levels. Haven't seen research to support that though.

Oherwise your values look fairly good. Mine were quite a bit worse although all labs are different.
My heart goes out to you! I hope your in a better place now vs when you took the test.
 
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27
Do they give you actual values of any other these things? LIke compared to RDA or AI values?
I'm not sure what you mean. The values are based on the cells metabolic rate change when the nutrient is given. So a higher percent means the cell reacted more strongly, indicating it needs it.

100% means the metabolic activity did not change from the baseline. So you likely have enough of more than enough.

I don't believe you get actual values based on anything. Just how it reacts metabolically to the nutrients. Even if it isn't perfect, it seems a lot better than blood serum testing.

Edit: This is what I remember from memory. You can read about it in more detail on Cell Science Systems website.
 
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linusbert

Senior Member
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1,399
I react very poorly to vitamins B12 and C especially, which is a bit ironic as most consider those very benign to supplement with, b
i tolerated sodium ascorbate pretty good, then i didnt anymore. i started vitamin D and that increased my tolerance for vitamin C again. now i take it again daily. also vitamin D increased tolerance for magnesium which i didnt tolerate anymore at the same time as C.
so there could be a nutritional deficiency puzzle if some things dont work out (anymore).
i think my problem was a calcium deficiency which was aggravated by magnesium and C - both are tightly involved in calcium metabolism.

b12 on the other hand not so much. i seam to tolerate it somewhat if its in a b-komplex until dosage of like 300ug.
b6 i also only tolerate in b complex , not solo.
 
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Wishful

Senior Member
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There's also the problem of "normal". We're all different, and some of us may have "healthy" levels that happen to be lower or higher than average for humans, and trying to push it to someone else's optimum levels may be counterproductive.
 
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27
So in the past week I've had two occurrences of muscle tightness that seems to turn into minor strain. First time I woke up and my heel/for was sore, by late morning I had to limp. It got better after a few days. Now last night I felt tightness/soreness in my left calf, this morning it is much worse and I have to limp again.

I am very overwhelmed, I'm very young and this is a lot for me to understand. I'm thinking of completely stopping the b complex (Thorne Basic B, only taking 1/7th daily). I almost feel like it might be causing more issues and exacerbating nutrients or deficiencies that I'm not currently acknowledging. Dietician is unfamiliar with all of this.

Right now I'm on PureGenomics Multivitamin (difficulty to tolerate at first but I think it helped a lot), 1/7th Thorne Basic B, 27mg iron, 2-3mg mk-4.

I can't help but wonder about the Isoleucine and Biotin. I recall a thread saying BCAAs need Biotin but I don't know why that would be. I have both coming.

I also don't understand how to manage Folate. Dietician wants to go slow and get more potential cofactors first.

Feeling very confused, there are no clear answers. Dietician hasn't had someone before with as low Isoleucine as myself, nor someone that had issues tolerating glutamine.

Hope everyone else is finding success.
 

Wishful

Senior Member
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6,034
Location
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but I think it helped a lot
Does that mean you're not sure that it helped a lot, but absolutely sure that it helped slightly less than a lot, or that your symptoms are reduced, but you aren't sure that it was the supplements, or that you really want it to be helping but aren't really sure that it is doing anything? It really is hard to know what effects a treatment has, since it's hard to measure anything about our symptoms, and also hard to avoid other factors changing.

My method is to test treatments at least three times, with appropriate time in between, and trying to hold other variables constant, to have some statistical evidence that the effect is real.

If the benefit is very small (if not just wishful thinking), then I pose the question: is the benefit worth buying another bottle/package? For fisetin, I answered yes, but of course, it stopped working before the second bottle was finished.
 

GreenEdge

Senior Member
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672
Location
Brisbane, Australia
Don't waste your money on vitamin supplements. Best to get our nutrients from meat and eggs in the form humans evolved to receive. Humans are the result of 2 million years of evolution. Remember that, accept it and learn to work with nature. Don't keep throwing curve balls at it.

For example flavored and sweetened drinks when our genetic programming only knows water and blood. Sweetened drinks raise our blood sugar so quickly our bodies can't release insulin fast enough to minimize the damage:
The sugar in your bloodstream attaches to proteins and produces harmful free radicals called advanced glycation end products (AGEs). As AGEs accumulate (the more sugar you eat, the more they develop), they damage the proteins around them.
Causing us to age more quickly.
 

JES

Senior Member
Messages
1,372
Don't waste your money on vitamin supplements. Best to get our nutrients from meat and eggs in the form humans evolved to receive. Humans are the result of 2 million years of evolution. Remember that, accept it and learn to work with nature. Don't keep throwing curve balls at it.
The point of evolution and natural selection is to maximize passing your genes forward. What happens after reproductive age is irrelevant, so if you want to stay healthy beyond let's say your 40's or 50's, there is a bit more to explore than just eating meat and eggs.
 

Wishful

Senior Member
Messages
6,034
Location
Alberta
For example flavored and sweetened drinks when our genetic programming only knows water and blood.
I think our ancestors, human or otherwise, consumed sweet fruit when it was available. Honey too. Probably nectar from some flowers. Some probably chewed on sugarcane well before bottled soda was invented. So no, our genetic programming includes simple sugars. Oh, and starches break down into simple sugars starting in the mouth (enzymes in saliva), so that counts too.
 
Messages
27
Does that mean you're not sure that it helped a lot, but absolutely sure that it helped slightly less than a lot, or that your symptoms are reduced, but you aren't sure that it was the supplements, or that you really want it to be helping but aren't really sure that it is doing anything? It really is hard to know what effects a treatment has, since it's hard to measure anything about our symptoms, and also hard to avoid other factors changing.

My method is to test treatments at least three times, with appropriate time in between, and trying to hold other variables constant, to have some statistical evidence that the effect is real.

If the benefit is very small (if not just wishful thinking), then I pose the question: is the benefit worth buying another bottle/package? For fisetin, I answered yes, but of course, it stopped working before the second bottle was finished.
Well I took it and over the next two months energy improved. Started being able to do chores.

When I first took the multivitamin my potassium need went to. But I got COVID and afterwards my body doesn't ask for more potassium. However sometimes I would get massive fatigue and low body temperature.

B Complex in anything but a tiny dose causes lots of issues. Frequent low body temperature, insatiable potassium, nausea, allergies, chapped lips, sensitive tongue and mouth, dizziness, massive anxiety, depression, etc. Currently I'm on about 1/7th (tried going up and things got bad again). I thought about upping the Folate, but I have concerns that will hurt more than help if I'm missing cofactors (carnitine, amino acid, whatever else I might be missing).

I'm starting to get off the b complex and instead add one vitamin at a time. I plan to keep the multivitamin since it did much more good than bad when I started it.
 
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GreenEdge

Senior Member
Messages
672
Location
Brisbane, Australia
I think our ancestors, human or otherwise...
Homo erectus (Latin: “upright man”), ancestor of modern humans (Homo sapiens) emerged about 1.9 million years ago. What homo erectus evolved from is irrelevant.

I think our ancestors, human or otherwise, consumed sweet fruit when it was available. Honey too. Probably nectar from some flowers. Some probably chewed on sugarcane well before bottled soda was invented. So no, our genetic programming includes simple sugars. Oh, and starches break down into simple sugars starting in the mouth (enzymes in saliva), so that counts too.
You may be correct, but nectar, whole fruits (fiber) and chewing on sugarcane are slow delivery mechanisms. It's the speed of consumption* that causes dangerously high levels of blood sugar and when repeated often leads to insulin resistance and type 2 diabetes.

* Our bodies are equipped to consuming sugars in small amounts at a time. There wasn't food processing to extract and concentrate the sugars to make a drink.

Honey will cause Hyperglycaemia (high blood sugar) feeling or being sick. abdominal (tummy) pain. rapid, deep breathing. signs of dehydration, such as a headache, dry skin and a weak, rapid heartbeat. Our ancestors (not acclimatized to high blood sugar) would have experienced that for sure.

All digestible carbohydrates (both simple and complex) break down into glucose (aka blood sugar). Carbohydrates are non-essential, our liver can produce all the glucose we require.

The Development of Agriculture - National Geographic Society
Agricultural communities developed approximately 10,000 years ago when humans began to domesticate plants and animals.
10,000 years is only 0.5% of 1.9 million years.
It's safe to assume that we didn't have table sugar and domesticated fruits before then.
History of Sugar - Making Sense of Sugar
It is widely believed that cane sugar was first used by man in Polynesia from where it spread to India. In 510 BC the Emporer Darius of Persia invaded India where he found “the reed which gives honey without bees”. The secret of cane sugar was kept a closely guarded secret whilst the finished product was exported.
17 Common Fruits And Vegetables As You Know Them vs Their Undomesticated Forms
Not too often does one see fruits and veggies in the wild, and if you did you might not recognize them. Undomesticated fruits and vegetables look a whole lot different - and, in some cases, are nowhere near as sweet as delicious domesticated fruits. Nowadays, grapes taste like cotton candy and apples take forever to brown. Sorry to break it to you, but that comes from genetic modification and selective breeding. Most wild fruits do not look or taste like that. Period. So, what did fruits look like before domestication?
 
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