• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Keeping Folate and MB12 in balance.

Messages
29
Hi.

After spending months adding pinches of crushed Metafolin and crumbs of MB12 and getting no where with a PFD I decided to try a larger dose. I took 200mc Folate and 1250mc MB12. 18 hours later - GREAT! I wrote in my diary "great feeling. Head clear. Feel normal". I tried this dose 3 times and the same thing happened and then it STOPPED!

Any clues as to why this might happen?

I have been increasing both but cannot get these good days back so I think the balance is out. or there is some other factor.

I have read the threads on 'Balance' and am trying to keep things 1:1 . A week ago went up to 1600 Folate and 1250 MB12. This eased the nerve and muscle pain in scalp by about 50% but has greatly increased fogginess, aswell as feeling constantly spaced and a bit agitated. Looking at the 'low potassium/low folate decision tree I would put these side affects in the folate def. category but they seem to be made worse with folate.

Could this be start-up of healing? or that I havn't got the balance right? Too much Folate? Not enough MB12?

I am also taking 1mg AD-B a day but cannot tolerate L-C-F as it appears to cause more nerve pain. Have managed 3weeks but had to stop.

Am thinking about uping Folate to 3200 but am not sure if I should be increasing the B12 aswell?

Should the balance be between the amount of folate and B12 taken or the amount of B12 absorbed?

Any suggestions would be great.

Linda
 

Adster

Senior Member
Messages
600
Location
Australia
I don't have any answers Linda, but I too am now wondering if the balance of b12 and folate is important, and what happens if the balance goes too far either way.
 

richvank

Senior Member
Messages
2,732
Hi, all.

My views are somewhat different from those of Freddd, but I will share them with you for what they are worth. In my experience, most PWMEs need only approximately an RDA level dosage of the folates, something like 400 to 800 micrograms per day. Methylfolate is the most important, but most people also benefit from some folinic acid.

I prefer starting with hydroxo B12, at a sublingual dosage of 2,000 micrograms per day, as in the Perque B12 Guard lozenges. Some people need to use methyl B12 instead, because their glutathione and/or SAMe is too low to be able to make the conversion from hydroxo to methyl B12, which is the form actually used in the methylation cycle.

In addition to these, there are other vitamins, minerals and amino acids needed by this part of the metabolism. I favor taking a potent multivitamin, multimineral to make sure there is enough of the vitamins and minerals. The amino acids can be supplied by good animal-based protein in the diet, such as meat, dairy products or eggs, depending on what a person tolerates well.

If the gut is not functioning well, the various nutrients may not be absorbed well. In that case, the gut needs attention first, by running a comprehensive stool test and then correcting whatever is found to be amiss.

Best regards,

Rich
 

Anteah

Senior Member
Messages
107
Location
Las Vegas, Nevada
Hi, Rich! Thanks for giving your perspective on the issue.

What multivitamin do you suggest? Is it important for it to be without folic acid?

Also once you know that gut is an issue what course of action is usually beneficial? I have had yeast issues for as long as I can remember and not much has helped but taking garlic and oregano oil with every meal, molybdenum twice a day and taking some potent probiotics at night time, but it is just that a maintenance, and not a cheap one. I would like to actually be able to heal it to where the only thing I am taking is probiotic at night and am not dependent on always having anti-parasitic supps by me when I eat. Any suggestions? (I am saving for a nutrigenomic testing, hoping that it will give me an idea as to what is really up with me).
 
Messages
29
Hi

Rich. Above you say:-


"My views are somewhat different from those of Freddd, but I will share them with you for what they are worth. In my experience, most PWMEs need only approximately an RDA level dosage of the folates, something like 400 to 800 micrograms per day".

But I have had such nerve pain in my scalp and face that decided increase the Methylfolate to see if it made any difference as Freddd had suggested it was a paradoxical/induced folate deficiency.

I decided to increase the methyfolate to see what would happen and its been a big relief as with each increase the pain has reduced considerably. Am now on 2400mg. So I think he must be right with this. I don't like taking so much but this is preferable to the pain.

What I don't understand is if you have a folate deficiency why would it only effect one area???

I didn't have any of this until started the MCBP.

Linda
 
Messages
29
Hi, Rich! Thanks for giving your perspective on the issue.

What multivitamin do you suggest? Is it important for it to be without folic acid?

Also once you know that gut is an issue what course of action is usually beneficial? I have had yeast issues for as long as I can remember and not much has helped but taking garlic and oregano oil with every meal, molybdenum twice a day and taking some potent probiotics at night time, but it is just that a maintenance, and not a cheap one. I would like to actually be able to heal it to where the only thing I am taking is probiotic at night and am not dependent on always having anti-parasitic supps by me when I eat. Any suggestions? (I am saving for a nutrigenomic testing, hoping that it will give me an idea as to what is really up with me).

Anteah

I too had a candida overgrowth and went through a lot of anti-fungals and found Threelac really he.

Linda
 

richvank

Senior Member
Messages
2,732
Hi, Rich! Thanks for giving your perspective on the issue.

What multivitamin do you suggest? Is it important for it to be without folic acid?

Also once you know that gut is an issue what course of action is usually beneficial? I have had yeast issues for as long as I can remember and not much has helped but taking garlic and oregano oil with every meal, molybdenum twice a day and taking some potent probiotics at night time, but it is just that a maintenance, and not a cheap one. I would like to actually be able to heal it to where the only thing I am taking is probiotic at night and am not dependent on always having anti-parasitic supps by me when I eat. Any suggestions? (I am saving for a nutrigenomic testing, hoping that it will give me an idea as to what is really up with me).

Hi, Anteah.

I have been considering recommending the Thorne Basic Nutrients, which comes in several variants, depending whether a person needs iron or some other things. These variants do not contain folic acid, but do contain methylfolate and folinic acid. I think it's best to avoid folic acid.

Gut issues vary a lot from one person to another. Some have H. pylori, some have various parasites (which can be protozoa or helminths, aka worms), and most have dysbiotic populations of bacteria, which can lead to leaky gut. There are also people who have celiac disease (gluten sensitivity) or sensitivities or allergies to other foods. So I can't make a general statement. I think stool testing is required to find out what is going on in a particular case. If you know you have gut issues, I would suggest that it would be better to spend your money on stool testing rather than nutrigenomic testing. Stool testing will tell you what is going on in your gut that needs to be treated, and you will know specifically what treatment is likely to help. Nutrigenomic testing only tells you tendencies. Some stool tests require a doctor's order, while others can be obtained without a doctor's order. One of the best that can be obtained without a doctor's order is the Metametrix GI Effects Complete Profile, which can be ordered from YourWaytoWellness.com or from www.directlabs.com. The first source may be less expensive.

I hope this helps.

Rich
 

richvank

Senior Member
Messages
2,732
Hi

Rich. Above you say:-


"My views are somewhat different from those of Freddd, but I will share them with you for what they are worth. In my experience, most PWMEs need only approximately an RDA level dosage of the folates, something like 400 to 800 micrograms per day".

But I have had such nerve pain in my scalp and face that decided increase the Methylfolate to see if it made any difference as Freddd had suggested it was a paradoxical/induced folate deficiency.

I decided to increase the methyfolate to see what would happen and its been a big relief as with each increase the pain has reduced considerably. Am now on 2400mg. So I think he must be right with this. I don't like taking so much but this is preferable to the pain.

What I don't understand is if you have a folate deficiency why would it only effect one area???

I didn't have any of this until started the MCBP.

Linda

Hi, Linda.

I'm glad you found a way to get relief from the pain. I don't know why the high-dose methylfolate is helping with this nerve pain. Perhaps it is supporting repair of the myelin on the nerves. This requires methylation.

High-dose methylfolate can be expected to stimulate the methionine synthase reaction, speeding up the methlation cycle. It can also be expected to inhibit the glycine N-methyltransferase reaction, which normally limits the ratio of SAMe to SAH. Thus, it can be expected to significantly raise the methylation capacity, and as I wrote, this may be supporting myelin repair on the nerves.

I do suspect, however, that this will also lower the production of glutathione, and that could be expected to produce excitotoxicity symptoms (anxiety, insomnia, nervousness, a "wired" feeling).

It's difficult for me to say what is going on in your case without some biochemical lab test data.

As you know, Freddd's views on treatment are different from mine in several respects. I think that Freddd himself has some genetic variations that are not common within the MECFS community, but perhaps you share some of them.
This is also difficult to say without genetic testing.

The best general advice I can give, based on experience with others, is what I wrote in my earlier post, above. Your case may be different from those, but without more data from testing, I don't know what else to suggest.

Best regards,

Rich
 
Messages
29
Rich,

Thankyou for taking the time to reply.

I am finding that I feel quite agitated, depressed and my sleep is suffering now and feel I need to perhaps cut back on the Metafolin.

I think you are right about healing the Myelin sheath as this is where all the pain was for the first 12months of ME and it felt as if the nerves in my scalp were burning and had 'things' crawling along them. This gradually improved and has only come back since trying the MCBP.


I would like to get some tests done but live in the UK. You did give me the link to a Lab. carring out testing here but I was unsure of the test to have carried out?

Can you advise please?

Linda