B12 High or Low? Trouble Tolerating? - Pernicious Anaemi...

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B12 High or Low? Trouble Tolerating?

My name is Christine. I'm brand new to all of this. My 19-year old daughter Faith has very serious health issues, including low iron, low folate, and low B12. About three years ago Faith's overall health took a drastic downward turn. She has now been home bound and largely chair-and-bed bound for the past three years, and has been hospitalized twice. She has chronic neurological Lyme disease and co-infections, as well as Hashimoto's disease--and we're not sure what all else. She has severe fatigue, and is extremely sensitive to motion of any sort (which makes her nauseated, etc.).

When Faith has tried to take B12 or folate, she has negative reactions (usually increased nausea and tenseness). Also, she even has trouble taking vitamin C. She didn't used to have trouble taking iron, but now she has negative reactions with that as well.

Why do her B12 numbers show high on a regular blood test (1008 pg/mL, ref range 232-1245, 02/23/18, without supplementation), but when we had cellular testing with the SpectraCell blood test, the results showed as low B12? Is it ever possible for someone with low B12 (in light of the SpectraCell test) to be unable to tolerate sublingual B12 (pure, with no other ingredients)?

Thanks,

A very concerned mother

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was the private test serum B12 or active B12?

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The regular blood test didn't explicitly say (though I'm thinking it's serum). The SpectraCell test (which is the one she tested low on) is at the lymphocytic level--so active.

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what were the units and ranges of the tests - you can tell if a test is serum or active from the ranges. active will have a range in around 25-165

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The serum test was 1008 pg/mL, (ref range 232-1245).

The SpectraCell test result was given as a percentage: Faith's was 17% (ref range >14%).

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impossible to be certain as I've never seen a B12 test result given like that but it may be the ratio of active B12 to total B12 in blood - which is usually around 20% so the result wouldn't indicate anything amiss.

Active B12 is the B12 that is bound to the protein that allows it to pass into your cells.

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This is a question about SpectraCell - and the answer seems fairly balanced - but could explain the apparent discrepancies:

quora.com/How-legitimate-is...

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The nausea symptoms arise from B12 trying to repair the vagus nerve.

The tenseness arises from the brain, also being energized by the B12, but the mind, operating in the brain, not knowing how to react to the stronger signals on the vagus nerve.

I get extremely hungry after each of my B12 injections but it took a while for my mind to figure out that the hunger was an illusion of the repair.

I still get angry, for about 12 hours, after my B12 injections. I’m taking weekly cyano injections. The anger is a sign that the nerves in the brain are being repaired. I know it will come and go.

Have your daughter start a logbook for symptoms, food, drink and medicines. There is a delay in a symptom from its cause because the gut is involved.

Unfortunately, each person gets a different assortment of symptoms that is unique to their nerve damage.

Have your daughter give each symptom a severity score (of her own choosing-1 to 5) and record the score with each of the symptoms. Keeping a log book also gives her some control back and is a way to assess changes in medicines or monitor progress of nerve repair, which can take months and years.

The hardest part is to convince your/her mind that the symptoms that arise after the injection are “good”. They look a lot like the bad ones that arise from the B12 deficiency.

The stronger the symptoms are after the jab means the lower the B12 was before the jab. It’s like an overshoot when she gets B12. It really means she needs more B12.

Lyme disease causes nerve damage and the B12 is helping to repair the nerves.

The hardest “good” symptom to deal with is pain but realizing that it arises from a stronger signal on the nerve getting to the brain is hard for the mind, also trying to function on a damaged brain, to comprehend.

Slow muscle movement exercises can help convince the mind that the pain is not real. Getting started is the hardest but i found that working through the pain causes my brain to recalibrate and the pain disappears. Once I get going, I can pace myself, and go all day with physical work in the garden that uses my muscles. Desk work is harder but once I get started I can usually keep going.

The brain takes about 3 days to recalibrate normally after telling oneself that the symptoms are “good”. This helps one relax and not be so anxious and allows the brain to recalibrate faster.

Stress and worry just make the recalibration of the brain take longer. And the worry about the cause of the pain just makes the pain worse. Gentle physical exercises are a good starting place. These can be done in a wheelchair as well.

This may not be what you or she wants to hear but it is working for me.

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And is a brilliant reply - it's good to be reminded of this!

Oh dear - you must be at your wits end! It's bad enough being ill ourselves but must be so much worse if it's your dear child.

I notice you say she has tried to "take" B12 and folate which suggests to me that she is trying tablets.

If so, try taking them with or after food (most likely tolerated) or on an empty stomach (2 hours after food and one hour before).

You could also try different types - cyanocobalamin/hydroxocobalamin/methylcobalamin/adenosylcobalamin.

Instead of tablets you could try sublingual spray or nasal spray. If trying injections, the first one should be done at a health centre which could care for her if she had a (very unlikely) more severe reaction.

As far as folate is concerned she could try folic acid/methylfolate/folinic acid.

Have you tried using anti sickness treatment with it? Even Sturgeron 15 travel sickness tablets help me if I get the dizzys and nausea from being too low B12 and folate, until I can get my levels back up.

I find Solgar Gentle Iron capsules - iron bisglycinate - are well tolerated and easily used by the body.

It might be worth asking for a method of hormone control to stop her periods so she maintains her blood levels better.

I'm sorry I don't know about the confusing test results - better to go back to the people who did the tests to get them to explain the differences - and possibly ask for other/repeat tests to be done before you try more supplementation.

One more comment - when I was chronically low B12 I couldn't stand anything moving passed me as well as me moving as my brain couldn't process the signals fast enough.

Good luck! x

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Is it possible to actually be allergic to B12 (I've heard it happens but is rare), and would the allergic reaction be similar / different to the other negative side effects that people have to B12 (though not allergic)? Would it be a drastic reaction even for tiny doses?

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