• 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.

Folic acid and folinic acid can block metafolin inducing deficiency called "ddtox"

dannybex

Senior Member
Messages
3,561
Location
Seattle
Think I need to back down a bit...

I don't need more than maybe 10mg B12 (all forms) sublingual to get the effect that gets me out of bed and up and around, and took a long time to work up to that, literally had to start with 250mcg B12.

I've been taking a quarter of a 5,000mcg Jarrow b-12 for a few days, and today was HELLISH, -- just extreeeemely TENSE from about 11am till 9pm -- and that was with 1.5mgs clonazepam taken in 2 parts, starting at 2pm -- so I think I'm going to have to follow your lead and go down to 250mcg for awhile.

If you started at 250mcg, how long was it before you upped the dose? And then did you increase it every week or so, or...?


Mag Chloride is essential for me with the B6 in particular, and I do have sulfation problems, very serious dysfunction of Liver phase III, measured in a provoked liver clearance detox profile. I think mag chloride and B6 may be essential for some non-responders on B12 protocols. But I would start with the mag chloride first, quarter tablets if you are concerned you might react negatively. Get some magnesium in you before re-starting up the B6 part of the methylation process.

I also had paradoxical reactions to 1/4 tabs of 1000mcg mB12 the first few doses. I had never reacted to cyano B12 that I took in the past, so it must be the methyl form. However, with mag chloride as mentioned above that went away. But I still have to manage my dose based on symptoms, gradually increasing dose and reducing when I get too much detox reaction.


Hmmm...so perhaps you answered my earlier question: You took 250mcg for the first few doses...then added the mag chloride and the negative reactions went away?

I've been taking 1/2 mag chloride tabs 3x a day -- not very much elemental mag -- but at least it doesn't give me the you know whats. I also took my first b6 (in p5p form) this afternoon, but was very tensed up before that, so don't think my bad day was a result of the b6.

With dinner I had more mag, with my first ester C. Still not sure how "C" fits into methylation, but I'm sure I'll learn. :)

Thanks everyone. Not sure how I'd get by without your help and your inspiring experiences w/improvement.
 

Adster

Senior Member
Messages
600
Location
Australia
Dan, Zytec antihistamines can help with that tension, and don't have many side effects. I got it a lot before I started chelation as I've mentioned in the past.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Dan, Zytec antihistamines can help with that tension, and don't have many side effects. I got it a lot before I started chelation as I've mentioned in the past.

Thanks Adster -- I'm glad it works for you, but antihistamines increase my tension big time -- I think because they tend to constrict blood vessels and reduce circulation (???). They make give my legs almost instant "RLS". :(

I used to be able to take them 20 or so years ago, but just cannot tolerate 'em at all.

But I appreciate your reply.
 

kurt

Senior Member
Messages
1,186
Location
USA
I've been taking a quarter of a 5,000mcg Jarrow b-12 for a few days, and today was HELLISH, -- just extreeeemely TENSE from about 11am till 9pm -- and that was with 1.5mgs clonazepam taken in 2 parts, starting at 2pm -- so I think I'm going to have to follow your lead and go down to 250mcg for awhile.
If you started at 250mcg, how long was it before you upped the dose? And then did you increase it every week or so, or...?
Hmmm...so perhaps you answered my earlier question: You took 250mcg for the first few doses...then added the mag chloride and the negative reactions went away?
I've been taking 1/2 mag chloride tabs 3x a day -- not very much elemental mag -- but at least it doesn't give me the you know whats. I also took my first b6 (in p5p form) this afternoon, but was very tensed up before that, so don't think my bad day was a result of the b6.
With dinner I had more mag, with my first ester C. Still not sure how "C" fits into methylation, but I'm sure I'll learn. :)
Thanks everyone. Not sure how I'd get by without your help and your inspiring experiences w/improvement.

Dan, that was a BIG dose to start with if you are a hyper-sensitive type, no way I could have tolerated that much at first, yet now 9 months later I take 10mg daily of B12. I don't recall exactly how long I took working up, I believe just a few weeks at the lowest 250mcg dose (1/4 of a 1000mcg tablet), then I went up to 500mcg for about a week, then up to 1000 for several more weeks, before starting quarters of the 5000mcg tablets. I suspect some very fundamental deficiency had to be addressed at the lower doses, it was like a detox function got turned back on after years of not working. On 'sick' days I learned to ramp-down, particularly when viral activity flared (actually that was probably the immune response starting-up). I believe I took about 4 months to get to my current dosage, which I spread out through the day. I still don't generally take more than 2500mcg at one time. The past few months I have not changed the B12 dosage, as I have been working on other parts of the CFS. Some of the other treatments I have used in the past now seem to work far better, but this is a new situation, and I have to start slowly with them again as well.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I've been taking a quarter of a 5,000mcg Jarrow b-12 for a few days, and today was HELLISH, -- just extreeeemely TENSE from about 11am till 9pm -- and that was with 1.5mgs clonazepam taken in 2 parts, starting at 2pm -- so I think I'm going to have to follow your lead and go down to 250mcg for awhile.

If you started at 250mcg, how long was it before you upped the dose? And then did you increase it every week or so, or...?


Hmmm...so perhaps you answered my earlier question: You took 250mcg for the first few doses...then added the mag chloride and the negative reactions went away?

I've been taking 1/2 mag chloride tabs 3x a day -- not very much elemental mag -- but at least it doesn't give me the you know whats. I also took my first b6 (in p5p form) this afternoon, but was very tensed up before that, so don't think my bad day was a result of the b6.

With dinner I had more mag, with my first ester C. Still not sure how "C" fits into methylation, but I'm sure I'll learn. :)

Thanks everyone. Not sure how I'd get by without your help and your inspiring experiences w/improvement.


Hi Danny,

http://en.wikipedia.org/wiki/Vitamin_C
Collagen, carnitine, and tyrosine synthesis, and microsomal metabolism

Ascorbic acid performs numerous physiological functions in the human body. These functions include the synthesis of collagen, carnitine, and neurotransmitters; the synthesis and catabolism of tyrosine; and the metabolism of microsome.[12] During biosynthesis ascorbate acts as a reducing agent, donating electrons and preventing oxidation to keep iron and copper atoms in their reduced states.
Vitamin C acts as an electron donor for eight different enzymes:[77]



Ascorbic acid is well known for its antioxidant activity, acting as a reducing agent to reverse oxidation in liquids. When there are more free radicals (reactive oxygen species, ROS) in the human body than antioxidants, the condition is called oxidative stress,[89] and has an impact on cardiovascular disease, hypertension, chronic inflammatory diseases, diabetes[90][91][92][93] as well as on critically ill patients and individuals with severe burns.[89] Individuals experiencing oxidative stress have ascorbate blood levels lower than 45 mol/L, compared to healthy individual who range between 61.4-80 mol/L.[94]


So it is needed for carnitine to aid the Krebs cycle and for collagen formation and a lot of other things.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Dan, that was a BIG dose to start with if you are a hyper-sensitive type, no way I could have tolerated that much at first, yet now 9 months later I take 10mg daily of B12. I don't recall exactly how long I took working up, I believe just a few weeks at the lowest 250mcg dose (1/4 of a 1000mcg tablet), then I went up to 500mcg for about a week, then up to 1000 for several more weeks, before starting quarters of the 5000mcg tablets. I suspect some very fundamental deficiency had to be addressed at the lower doses, it was like a detox function got turned back on after years of not working. On 'sick' days I learned to ramp-down, particularly when viral activity flared (actually that was probably the immune response starting-up). I believe I took about 4 months to get to my current dosage, which I spread out through the day. I still don't generally take more than 2500mcg at one time. The past few months I have not changed the B12 dosage, as I have been working on other parts of the CFS. Some of the other treatments I have used in the past now seem to work far better, but this is a new situation, and I have to start slowly with them again as well.
Hi Kurt,
Some of the other treatments I have used in the past now seem to work far better,


This is something I noticed too, that most everything else worked noticeably better after adding the methylb12. To me this suggested that the most limiting factor, mb12, was being taken care of and now lack of other things were limiting the healing.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I don't know about the B, thought it was the other way, that some B vitamins require magnesium. Anyway, methylation requires magnesium. And some chronic infections (such as Lyme-related), deplete magnesium, spirochetes use magnesium rather than iron like most other bugs. So we may be losing magnesium chronically and need regular supplements just due to a wierd infection load.

I was told by a integrated med doctor years ago that many forms of magnesium require choline to get in cells. Some people take choline citrate along with magnesium. But most people have adequate choline. However, magnesium chloride seems to absorb well on its own, and also seems to help the digestion (probably the chloride ions support digestive HCl production).

Why not make your own? Compounding can't be that difficult. Just buy the powders, measure and mix, put in capsules, etc.


Hi Kurt,

Why not make your own? Compounding can't be that difficult. Just buy the powders, measure and mix, put in capsules, etc



You have a point. The toughest part is putting it in the capsules.
 

anne_likes_red

Senior Member
Messages
1,103
Dan

Dan,

Just a little bit more on Mg and B6. Might be helpful??

According to my Pangborn and Baker (Autism Research Institute) book a study by Tapan Audhya showed that in normal children blood concentration of B6 (he measured b6 and P5P parameters) peaked 2 hours after supplementation but in autistics concentration peaked 5 - 15 hours later. They generally recommend B6 and anything containing B6 be taken with breakfast. I'm not sure if this is because of the delay, but I decided it might be and I've adjusted my timings a bit.

I don't know about you but I'm finding it hard to work out how much of the co-factors to aim for.
In the Magnesium section of the ARI book Pangborn mentions studies by Rosemary Waring and says
Based on Waring's studies with human cells, for whatever amount of pyridoxine is taken, at least 10% of that amount of magnesium (as elemental magnesium by weight) should also be taken to enhance the sulfation chemistry.

Mg and the "you know whats"...Pangborn suggests you may be able to tolerate more if you avoid gluten, which you probably are anyway. :Retro smile:

And Vit C helps at the glutathione end of things. I've always found Vit C beneficial when any kind of detox or immune challenge kicks in.

Hope you're not having another horrible day! I've had one or two, but a handful of charcoal caps a couple of nights in a row seems to have helped enough for me to have enjoyed a relatively active weekend. (It was severe headaches in my case, not anxiety - although a wired feeling is there at some level too.)

Best,
Anne.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Hi Kurt,

Why not make your own? Compounding can't be that difficult. Just buy the powders, measure and mix, put in capsules, etc



You have a point. The toughest part is putting it in the capsules.

I've used this before....

Amazon.com - The Capsule Machine

51c90wBfIjL._SL500_AA300_.jpg
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
What about labs that make custom vitamins like Custom Capsule or Vitaganic?

The price is a tad bit high, but of more concern to me is quality. How do you determine the quality of their ingredients?

Freddd, if you go the "roll-your-own" direction, could you be so kind as to share with us how you go about doing it and what sources you see as being effective?

I wonder if a group buy is worth investigating...
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Dan, that was a BIG dose to start with if you are a hyper-sensitive type, no way I could have tolerated that much at first, yet now 9 months later I take 10mg daily of B12. I don't recall exactly how long I took working up, I believe just a few weeks at the lowest 250mcg dose (1/4 of a 1000mcg tablet), then I went up to 500mcg for about a week, then up to 1000 for several more weeks, before starting quarters of the 5000mcg tablets. I suspect some very fundamental deficiency had to be addressed at the lower doses, it was like a detox function got turned back on after years of not working.

Thanks so much Kurt -- again, very reassuring. These 'hellish' nightmare-type days make one think they're going crazy.

I think too that due to the PST-sulfation issue, that I still cannot tolerate high, or even moderate salicylate foods, which I had been increasing lately -- desperate for something with FLAVOR. :0

And perhaps due to the mercury 'dump' (?) from last fall, it's worsened liver/gallbladder issues, esp proper bile formation (bile is essential to get merc out of the liver). I can't seem to tolerate much dietary fat -- and had been increasing that microscopically -- but got that RLS-ish thing in my legs, which as some of you know, isn't exactly RELAXING. So...back to bland for now, and will stop the b12 for a couple days, then start over at 250mcgs.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Thanks Freddd -- for the info connection vitamin c and carnitine. I've been taking l-carnitine off and on for years, but not much C. I was aware of the collagen connection, but was afraid too much C would lower my copper, which I think is low. Need to get a good blood test for that, but have to raise the $$, as the medicaid doc will not authorize it.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Dan,

Just a little bit more on Mg and B6. Might be helpful??

According to my Pangborn and Baker (Autism Research Institute) book a study by Tapan Audhya showed that in normal children blood concentration of B6 (he measured b6 and P5P parameters) peaked 2 hours after supplementation but in autistics concentration peaked 5 - 15 hours later. They generally recommend B6 and anything containing B6 be taken with breakfast. I'm not sure if this is because of the delay, but I decided it might be and I've adjusted my timings a bit.

I don't know about you but I'm finding it hard to work out how much of the co-factors to aim for.
In the Magnesium section of the ARI book Pangborn mentions studies by Rosemary Waring and says

Mg and the "you know whats"...Pangborn suggests you may be able to tolerate more if you avoid gluten, which you probably are anyway. :Retro smile:

And Vit C helps at the glutathione end of things. I've always found Vit C beneficial when any kind of detox or immune challenge kicks in.

Hope you're not having another horrible day! I've had one or two, but a handful of charcoal caps a couple of nights in a row seems to have helped enough for me to have enjoyed a relatively active weekend. (It was severe headaches in my case, not anxiety - although a wired feeling is there at some level too.)

Best,
Anne.

Thank you Anne -- so cool you have the actual book for referencing! And very interesting and helpful info -- I really appreciate your taking the time to post it.

Today hasn't been quite as bad, thank you. I took some SAMe in the AM, then again before lunch -- that always seems to help when things get 'dark' and also helps with that uncomfortable wired and also the RLS-ish feeling. But now it's worse again, perhaps due to the olive oil I dribbled on my lunch -- just a tiny bit -- but later found out it's HIGH in sals.

Deeeeeeep breath. :)
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
What about labs that make custom vitamins like Custom Capsule or Vitaganic?

The price is a tad bit high, but of more concern to me is quality. How do you determine the quality of their ingredients?

Freddd, if you go the "roll-your-own" direction, could you be so kind as to share with us how you go about doing it and what sources you see as being effective?

I wonder if a group buy is worth investigating...

Hi JPY,

I'm investigating putting together a set of "private label" supplements. That gets around the price issue of small volume. That brings up 100,000 capsules (very small order), 1000 jars of 100. Basically 150 people or so willing to buy a years supply at a time would do the trick, anything we want in the exact mix and forms, from many familiar companies and familiar formulas. After all costs are said and done it won't be too different from the discounted prices most of us have been receiving.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Hi JPY,

I'm investigating putting together a set of "private label" supplements. That gets around the price issue of small volume. That brings up 100,000 capsules (very small order), 1000 jars of 100. Basically 150 people or so willing to buy a years supply at a time would do the trick, anything we want in the exact mix and forms, from many familiar companies and familiar formulas. After all costs are said and done it won't be too different from the discounted prices most of us have been receiving.

LOL, I kinda saw this coming. Great idea. If you're going to get involved in large quantity capsule filling, you might want to check the Capsule Connection website. In addition to the device I posted earlier, they also manufacture devices that fill 300 or so capsules at once. They're little pricier, of course, but if you intend on doing a large volume, it may be worth it in the long run. You can probably amortize the cost over a year or so without having to jack up the price of the supplements too much.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
LOL, I kinda saw this coming. Great idea. If you're going to get involved in large quantity capsule filling, you might want to check the Capsule Connection website. In addition to the device I posted earlier, they also manufacture devices that fill 300 or so capsules at once. They're little pricier, of course, but if you intend on doing a large volume, it may be worth it in the long run. You can probably amortize the cost over a year or so without having to jack up the price of the supplements too much.

I was going to have a private label items produced by established companies who do such who can probably produce 100,000 caps in an hour quite automatically and fully packaged etc.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
I was going to have a private label items produced by established companies who do such who can probably produce 100,000 caps in an hour quite automatically and fully packaged etc.

Probably a more prudent approach.
 

kurt

Senior Member
Messages
1,186
Location
USA
Hi JPY,

I'm investigating putting together a set of "private label" supplements. That gets around the price issue of small volume. That brings up 100,000 capsules (very small order), 1000 jars of 100. Basically 150 people or so willing to buy a years supply at a time would do the trick, anything we want in the exact mix and forms, from many familiar companies and familiar formulas. After all costs are said and done it won't be too different from the discounted prices most of us have been receiving.

That may make sense eventually if enough people can benefit from the mix. However, I would try-out on a smaller scale initially. Perfect the combination, ratios, etc.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
That may make sense eventually if enough people can benefit from the mix. However, I would try-out on a smaller scale initially. Perfect the combination, ratios, etc.

I was thinking the same thing.