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DS16 is compound heterozygous MTHFR. LLMD has him supplementing with sublingual compounded methyl B12 daily (been supplementing for 2.5 yrs).

 

He also takes 2 Thorne Methyl-Guard Plus capsules QD.

 

His serum B12 level is >1999 (normal range is 211-946).

 

I still don't understand the whole methylation issue - we just follow doctor's orders and supplement.

 

I have 2 questions:

 

1) Could the serum B12 be elevated from too much supplementation?

 

2) Is the level high because he does not absorb it?

 

Thanks in advance for any insight you may have.

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I am no expert on this, despite my many postings. It's a topic I'm passionate about but passion does not equal expertise. So this is only my understanding...

when you test too high in B12, I think it means you have unmethylated/unused B12 hanging around. Meaning you either have too much B12 or not enough B9 (in the form of methylfoate). Think of it as trying to make purple. You need equal amounts of methylfolate + methylB12 to make the shade of purple you're after. Instead, your purple is leaning heavily toward the reddish side. You probably need to take in less red (b12) and more methylfolate (blue) to get balance.

 

So personally, if it were me experimenting with my own child, I'd keep the sublingual methylB12 but stop the methylguard, which has both methylfolate and methylB12. In place of the methylguard, I'd give just straight methylfolate. I use Holistic Health's Methylmate B liquid drops because it helps me tweak doses very easily. But once you settle on a dosage, you can use something different - tho it's hard to find things that don't also contain some form of B12.

 

This would accomplish two things at once - first, you could adjust the dose of methylfolate upward to team up with that excess B12, thus adding more blue to your puddle of excess red, making more purple. Also, by eliminating the methylguard, you'd be putting less B12 (red) into the system. These two steps "should" help sop up your puddle of excess red at some point. However, after a time when the puddle was gone, you might need to readjust dosages of both methylfolate and methylB12 and find a new equilibrium.

 

Other options would include switching from methylB12 to hyroxyB12 (Perque makes a hydroxy sublingual). This would cause the body to use up a methyl donor to convert the hydroxy into the methyl form and could possibly reduce the amount of unmethylated B12 hanging around. But my science is weak here and someone more knowledgeable might say I was mistaken about this. Do some research - don't take my word.

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I think it is better if you test the blood cell utilization of B-12. There are two tests we did.... SpectraCell Vitamin/Mineral test (looks at inner white blood cell utilization) and the amnio acid testing by Dr.s Data. There is a big difference between what is being circulated in the blood and how the cells are utilizing the vitamin/minerals. We tested our DD's zinc both ways (serum and Spectracell) and found her to be severely zinc deficient in her serum and only borderline on SpectraCell. We are monitor zinc, copper, methylfolate, calcium, glutatione, etc. via Spectracell. We've done this testing once a year but because vitamin/minerals are so interdependent we are switching to once every six months. Its easy to become copper and calcium deficient if supplementing with Zinc/Copper. You should be supplementing at a 1 to 8 ratio of copper/zinc.

 

I think everything LLM mentions is important to try.... definitely address the methylation as best you can. However, I would still follow those supplement choices with regular Spectracell and Amnio Acid testing..... Sometimes due to LEAKY GUT these vitamin/minerals do not get absorb properly via the intestinal track and they go straight into the blood stream hence high level of serum levels.

 

I also recently learned from our DDs neurologist that if your body is low on Amnio Acid it can not produce IgGs. Hence, immune deficiencies. DD is immune deficient. You can also understand how your son absorbs stuff via comprehensive stool and amnio acid testing.

 

These test will definitely help you to regulate what is being utilized by the body.

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This is a very good question. Don't know the answer. DS is also compound heterozygous. About two years ago, I took him to an integrative doc and did testing. He was started on methylB12 injections. After a year of injections and going to see a doc who has started treating PANS, we found his B12 sky high. She stopped the B12 and he now uses a cream, Neurobiologix Neuroimmune Support w/ B12 in it and his levels have started dropping but they are still above range. He's made a lot of improvement but there are many factors contributing. His new doc says too much B12 can make you angry and irritable.

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We had one doc tell us high B12 levels on testing can be unreliable.

Also, the doc in the book, "Could it be B12?" (by Jeffrey J Stuart and Sally M. Pacholok) says that patients with intestinal bacterial overgrowth often have falsely elevated serum B12 levels. Of course there are other factors, but this would be a big one with most of our kids. He also states repeatedly that the lower limit for this test is far too low.

 

 

Pg. 218 "At this time, because the lower limit for the serum B12 test is too low, we recommend two options for clinicians: 1) clinical exam and use of the serum B12 (treating symptomatic patients in the gray zone - B12 <450pg/ml); or 2) clinical exam and use of both the serum B12 and urinary MMA (Methylmalonic Acid) for patients who present with symptoms consistent with B12 deficiency. If either test is abnormal (or the serum B12 is in the gray zone), treatment needs to be initiated."

 

 

They also believe normal serum B12 levels should be greater than 550 pg/ml. "Elevated levels of MMA indicate B12 deficiency." (They prefer the urinary MMA over the serum...)

 

The urinary MMA is on the Organic Acids Test (OATS). We had ours done through The Great Plains Laboratory.

 

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I can only give you my personal opinion based on my experience with my children. I'm not sure what mutations your kids have. Lithium is necessary to transport B12 into the cells. Those with MTR, MTRR and SHMT mutations tend to be low in lithium. My children were so low in lithium that their levels were undetectable. You can give over the counter lithium orotate supplementation (not the same as prescription lithium) to replace lithium levels just as you replace B12. This helps transports B12 into the cell. If there is no lithium, it doesn't matter if you have B12 or not, it will not be transported into the cell. In my opinion, the benefits of Lithium supplementation is under estimated because people get confused and think you are giving prescription Lithium. Prescription lithium is given in doses of 900mg - 1800mg. Lithium orotate supplement is around 5mg.

 

Also, when you are depleted of lithium it causes behavior problems. I can't tell you the wonderful progress that my daughter has made since adding this one supplement. You must start slowly and gently work up to a full capsule. It's always best to do urine and hair samples to determine if there is a need for supplementation first. I must admit that I tested two of my kids and then the rest of us just started on it. I feel so much better too.

 

That's my 2cents.

 

Dedee

Edited by dedee
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