Do I need B12/ lab results?

[pastet89]

Hi,

in brief, I don't trust doctors, I prefer to ask someone who have experience with B12 Freddd protocol.

My brief background: 10 years illness, 8 of which severest systemic candida ever (yet to find someone so bad), mercury poisoning, and adrenal fatigue (AF is from 2.5 years). Noone ever helped me really, unable to chalete Hg as per Cutlers protocol, unable to treat candida etc...

I have always been taking B complex. One year ago I stopped it and started to take B complex, but without Folate and B12. And I started sublingual methylfolate.

I am struggling with very bad brain tiredness and disfunction. When I do some mental work I get very very easily so tired that I need weeks or months in order to recover so that I can work just one more week. All started from overstudying in University, but went chornic since then. I did the B-vitamin-stuff switch in my program around a month after the first brain tiredness and since then I am not recovered.

Now I did a test with those results:

B12: 306
Homocysteine: 15

So those results are after one year on B complex without B12 and Folate, no B12 and with Methylfolate. I am eating plenty of meat. Only that (due to my unheardly restricted candida diet).

Am I B12 deficient and is that a reason for my brain fatigue? Shall I start Freddd's protocol? I am VERY carefule when it comes to B12 as before I tried to "touch it" and even a single drop of sublingual one was giving me "light-headed" symptoms. Jarrows Methylcolabamin initially was gving me ephoria and power, but later anxiety. So I learned that this is a very delicate stuff and I must be sure what I am doing.

Many thanks in advance!

 

[Eastman]

B12: 306
Homocysteine: 15

Your test results do not suggest an obvious B12 deficiency.​

Do you know your vitamin B1 status? It is possible that B1 has a role in cellular uptake of B12 and folate and a B1 deficiency can mask deficiencies in the latter, based on an observation by Dr Derrick Lonsdale mentioned in the article Are High Folate and Vitamin B12 Linked to Low Thiamine in Autism and Other Disorders?

Many years ago I was confronted by the case of a six-year-old child... I had a blood test performed that showed that he was vitamin B1 deficient. But there was another strange association. Folate, a B vitamin and vitamin B12, also a B vitamin, both had very high concentrations in the blood...

... I treated the child with megadoses of thiamine (vitamin B1) and sent him home. To my great surprise, not only did his health improve drastically, his feverish episodes ceased and the repeat of the blood tests showed that the levels of folate and vitamin B12 had fallen into the normal range.

...I am VERY carefule when it comes to B12 as before I tried to "touch it" and even a single drop of sublingual one was giving me "light-headed" symptoms. Jarrows Methylcolabamin initially was gving me ephoria and power, but later anxiety. So I learned that this is a very delicate stuff and I must be sure what I am doing.

I had that light-headedness as well when I started with B12. Otherwise, your experience reminded me of this thread: Consider this before you go down the MTHFR self-treatment rabbit hole.

 

[Sundancer]

Hi @pastet89 ,

I'm happy with the methylcobalamine. In short, I've been taking Bcomplex, B12 bloodlevel was 900. Nobody thought that B12 could be problem. I just tried it and even though I do have dizziness and heightened muscle-tension. the pro's greatly out weigh the contra's.

But I go ultra slow, I've twice tried to titrate up from 2 to 3 mg but dizziness and sleeping-problems were too much for me. then bought another brand ( which lets easily break the lozenge in two) tried it. Was stronger then what i had so kept it at 2 mg for a while. Now the dizziness has abated and today started with 2,5 mg. See how it goes.

the pro's, brainfog has lessened enormously, cognitive function is better. Wordfinding-problems less, memory better. using the wrong words more or less gone.
restorative sleep, after years, I'm slowly weaning myself off some supplements I needed for sleep
I do have somewhat more energy. Can take the stairs sometimes, take a little walk. Legs seem to be stronger. OI is somewhat less. Halfmoons on nails come back, ridge om nails have lessened considerably. Hair does not fall out anymore.

So for me it is worth the initial setbacks I get. But do not give me a ' normal amount' shot of the stuff, I would get very ill. I've sort of concluded that it awakens my mastcell issues.

Plan is to go further like this, very slow, seeing how much potassium I need. I want to go up to 5 mg and then trying 0,5mg injections.

but every body is different in its needs

 

[pastet89]

Thank you for your answers. So far I decided first to try high dose methylfolate and see if it makes any difference. But I will think about adding methylcolbamaine as well on a later stage.

 

[Mary]

@pastet89 - I don't go by blood results for B12. My B12 is always quite high on blood work, but I have to take a lot to be able to get enough. B12 is not easily utilized by me and many people with ME/CSF, so to get enough, I take two 5,000 mcg doses of liquid methylcobalamin a day, as well as 1600 mcg folate. Though you sound like you're a lot more sensitive than I am to B12.

A word of warning - it is recommended to NOT take folate without B12. Folate alone can mask or hide a B12 deficiency so I would be concerned if you were to start a high dose of methylfolate without any B12.

Also - are you aware of the issues with potassium and folate and B12? Starting to take B12 and/or folate can cause a potassium deficiency rather quickly. The B12 and folate will cause cells to start dividing more rapidly and doing what cells do, which uses a lot of potassium, and thus can cause a functional potassium deficiency. This low potassium often occurs within 2 or 3 days of starting B12 and/or folate. I got an initial boost of energy when starting methylfolate (I was already taking methylcobalamin) but about the 3rd day I was hit with severe fatigue which was due to low potassium. I had to titrate up to 1000 mg of potassium over a couple of days, and the fatigue went away. Freddd wrote several times about potassium issues with methylation.

Other symptoms of low potassium include cardiac issues (e.g., arrhythmia), muscle spasms or cramps, ANXIETY, and several other things. Look it up. So - your anxiety after starting the methylcobalamin could very well have been due to low potassium. And the solution may have been to keep taking the B12 but also get enough potassium. It's very interesting that the B12 made you feel so good at first and then went downhill, why is typical for low potassium.

I think there's a very good chance your fatigue etc. is due to low B12, despite your "normal" blood work. If you try B12 again, go slow of course, but then if you start to have negative symptoms like anxiety, etc., try drinking low-sodium V8 or low-sodium vegetable juice - it's high in potassium and low in sugar, which is important for me. I'd suggest several glasses and see if you start to feel better after a few hours. I don't think a few bananas would be enough.

You actually might have low potassium right now from the methylfolate alone. Again, I'd try the low-sodium V8 (higher in potassium than regular V8) and see what happens. And again, I don't think it's wise in general to take folate without B12. Just go slow whatever you do and be on the lookout for symptoms of low potassium.

 

[pastet89]

@Mary Thank you. That makes sense.

1) Do you judge B12 levels on Homocysteine levels or entirely on symptoms if you ignore the serum results? In my case judging on symptoms can be almost impossible as I have so many conditions masking each other.

2) Do you take methylcolabamin only or also adenocolabamin?

3) Do you think it's possible for a person eating meat on a daily basis for 8 years to get B12 defficient? (This is what wonders me most).

4) I am eating virtually only salt potassium substitute. In quite large quantities. Do you believe that is sufficient for the potassium supply?

Thanks!

 

[Mary]

1) Do you judge B12 levels on Homocysteine levels or entirely on symptoms if you ignore the serum results? In my case judging on symptoms can be almost impossible as I have so many conditions masking each other.

I've never judged B12 levels on homocysteine levels. My former doctor (who unfortunately died a few years ago) did a hair analysis each year, and my cobalamin levels were always undetectable. He had me do injections 3 x a week (self-administered), and I felt no different. Then I tried sublingual tablets, and felt nothing. Then I tried sublingual liquid and upped my dose and for the first time felt an increase in energy (although my B12 is still undetectable on hair analysis) FWIW, your homocysteine is borderline high - top of the normal range which can be an indication of B12 deficiency.

2) Do you take methylcolabamin only or also adenocolabamin?

I only take methylcobalamin though I used to take adenosylcobalamin. I can't advise whether or not you need it.

3) Do you think it's possible for a person eating meat on a daily basis for 8 years to get B12 defficient? (This is what wonders me most).

Yes, mainly because so many people with ME/CFS have such a high need for B12, much higher than normal healthy people. Again, I have a high serum level, but that's because there's difficulty getting B12 into the cells where it's needed. I think it's similar to potassium in that regard - people with ME/CFS can have normal blood levels of potassium but have low intracellular potassium (see http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422)

4) I am eating virtually only salt potassium substitute. In quite large quantities. Do you believe that is sufficient for the potassium supply?

I don't know. We're all different. Some people here have to take 3000 mg a day of extra potassium. I need 800 to 1000 mg. The daily RDA is 4500 mg (and that's the minimum), and I think people with ME/CFS may well need more because of our problems with low intracellular potassium.

Because of your symptoms, your mental fatigue etc., I think it's very possible you're deficient in B12 and think it's worth exploring further, slowly and carefully. And again I think it might be good to get some low-sodium V8 and drink several glasses and see if that helps as well. You may (or may not) end up needing more potassium, and may have to supplement more than you get in your salt substitute.

Re your mercury and candida - I'm sure you know that they can be connected. I tried Cutler's protocol and did not do well with it. I inadvertently stumbled across glycine, inositol and glutamine, all of which are needed in phase II liver detoxification, and all of which caused me detox symptoms, especially the glycine which I was taking for sleep. I ended up taking very small doses (especially of the glycine) over several months, gradually increasing the doses and gradually my detox symptoms abated. I used to get detox symptoms at the drop of a hat and very rarely do any more. You might want to look into the Quicksilver Mercury Tri Test, which will measure not only your mercury burden but also your ability to excrete mercury/. I had the testing done shortly after my detox symptoms had abated and it showed extremely low levels of mercury together with a good ability to excrete mercury, which I credit to the glycine, glutamine and inositol.
https://www.quicksilverscientific.com/testing/clinical-metals-testing
https://www.diagnose-me.com/treatment/liver-detoxification-phase-II-support.php

You have to go through a practitioner to do the testing and fortunately I came across Allen Bonilla (http://www.allenbonilla.com/mercury-toxicity-test-use/) who worked with me over the phone and by e-mail. He was very kind and knowledgeable and extremely helpful.

 

[pastet89]

Thanks, Mary!

I am from Europe but even tough we don't have V8 juice here I am sure I can't have it. My diet is extremely limited as I have food intolerances to more than 99% of the foods on earth. I can eat about 5-6 things for years and I am yet to find someone so sensitive. For now I will see how I feel with the salt substitute.

Cutler protocol didn't work for me either. Nor does the Quicksilver products. I even got worse than the Cutlers protocol. I also did the Tri Lab Test and it showed almost zero excretion. I am finally working with a practitioners in the UK for a year so far with Voll testing and homotoxicology. I am seeing some progres.

I wish you all the best and a great way to recovery!