• 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"

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
anne... the detox reaction you describe is very familiar to me.. that's what I experience, I feel muggy, kinda nauseous, aching knee joints, calves. I wonder what is going on with the leg sensations? oxidative stress?

Question: did you get overwhelming, runaway detox with the 800mcg x4 a day...or did you feel ok on it, or good, or what?

I can see how it might make yr brain hum....given that L5 methyl is apparently the only form of folate to cross the BBB , but I'd be a little scared of too many toxins being mobilised into the bloodstream...

Interested to hear how you got on.

My bet would be folic acid blocking a whole lot more Metafolin. The nausea, painful aching joints and muscles are both direct effects of folate deficiency that I have had over and over if it was severe enough and/or went on long enough. These feeling associated with an induced folate deficiency, whether paradoxical folate deficiency from folic acid, folinic acid or even conceivably food based folate, or from glutathione and/or NAC caused "detox reaction" which is a misnomer for induced folate deficiency. The test is EASY. Get rid of all folic acid, folinic acid, glutathione and NAC from ones program and take a larger dose of Metafolin. My symptoms of this sort start fading in hours when the Metafolin and mb12 and adb12 are taken. Some of the symptoms in which actual cellular damage is done can take weeks to fully heal.
 

aquariusgirl

Senior Member
Messages
1,732
Hmm. This is kind of the problem....we're not comparing apples and apples.
I get funny brain sensations that I am pretty sure are metals being mobilised when I take modest amount of folapro and folinic and lots of B12....but I haven't chelated.
Anne probably has a lower risk of adverse effects with this protocol because she has already reduced her metal burden.
I couldn't do this kind of methylation support without having some chelators around. It would completely screw me up.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd,

We have many, many millions more livestock - and you wouldn't believe the number of highly studied, cutting edge supplements there are available here for those guys! :)
Yes the lack of choice on the shelves here is because there just isn't the population to support it.
But I can shop at iherb just like anyone else - what a blessing that is! The freight charges add a bit but most of the products seem like good value to me.

That B complex was a lucky find, I was looking for different forms of B1 and that complex came up in a search.
It's good to see one that fits the bill become available at iherb. I've ordered a couple of months worth and I'll see how that goes.

In the few days after I dropped folinic/added folic, and before I started the high dose Folapro, I got quite unwell - I stopped sleeping, anxiety increased etc. My husband is convinced folic acid is more of a problem for me than folinic. Either that or according to him there's some complex masking game going on.

I'm looking forward to giving the 5-mthf a fair go!

:)



Hi aq,

I didn't get any brain hum from upping the 5-mthf, but I do each time I up my MethylB12.
Perhaps the 400mcg per day folic acid I was taking was a significant limiting factor with the 5-mthf? I didn't want to risk taking those doses of single B's without a good complex in place. Now that I've found a suitable B complex, I'll try the high doses again and report back.
So anyway, I didn't feel better on the high dose 5-mthf. And only worse in that my headache frequency increased a bit, and I developed the new muscle stiffness/burning feelings. No nausea here thank goodness. I'm supporting sulfation too - when I started that I did get a lot of nausea, but that's 100% settled.

The leg muscles - yes it's calves mostly. It's like I've just walked up and down the world's steepest street without recovering from having done it the previous day!
I upped potassium but I wonder if I need to take more still. I have a persistant twitchy lower eyelid and I thought this was related to magnesium, but I just discovered that plenty of web sources mention potassium as well.

aq you asked in another post what is too much detox. I'd personally get worried if I developed chronic kidney pain (even a persistantdull ache), or any pains in the liver.
I had a low grade kidney ache for months when I did chelation after amalgam removal. I was closely monitored by a doctor then so it was OK, but if I noticed that happen again I think I'd want to slow down.

HTH, Anne.



OK, I keep meaning to make a note of my improvements somewhere. There are some things that have changed over the past two months.

*My stamina has improved. It feels like I have a new source of energy. It feels like it's at a cellular level - not just a quick boost from something I'm taking. Its subtle but it's there, and it's there all day.
*I haven't had any sinus headaches or infections, or migraines since I started B12&Friends. Thats's the longest I've been free of those particular symptoms in more than a decade.
*I have not had my typical Autumn Crash. First time in years. I'd usually be a month into a 2 - 3 month crash by now.
*Foggy brain is sometimes worse but occasionally better. The better part is excellent :)
*I'm dreaming much more, or at least remembering lots of details. I think that qualifies as an improvement.

Hi Anne,

I was amazed at suddenly starting dreaming again, the very first night of Metafolin even though my body still had some folate deficiency symptoms and I was still taking folic acid.

It's good not to forget the potassium because that can cause all sorts of problems.

Interestingly, it was NZ where the study with lambs was done. When 6 week old lambs were given a single 5mg injection of mb12, their weight at harvest was 33% greater.

For me folic acid produced the beginning of deficiency symptoms in 3 days. It took a month for the folinic acid to do so and it came on more slowly with less impact, slowly and gently comparatively.

The chronic sinus problems are a known b12 deficiency problem. So is low energy. So are headaches. Have you ever compared all your symptoms to the list of symptoms?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hmm. This is kind of the problem....we're not comparing apples and apples.
I get funny brain sensations that I am pretty sure are metals being mobilised when I take modest amount of folapro and folinic and lots of B12....but I haven't chelated.
Anne probably has a lower risk of adverse effects with this protocol because she has already reduced her metal burden.
I couldn't do this kind of methylation support without having some chelators around. It would completely screw me up.

Hi aquariusgirl,

You would need to get rid of the glutathione, NAC, any other direct precursors, as well as all folic and folinic acid. You may find all sorts of symptoms change and go away. A whole lot of people are clearly having this folic acid/folinic acid problem. Looking at my history it might actually be the root causal factor with the b12 deficiency co-equal or secondary to the folate. Many people are calling these induced folate deficiencies "detox". As I have said, the test is easy. The glutathione/NAC doesn't clear as rapidly as the folic/folinic acid. I had those induced problems, and increasing neurological deterioration, hang on for 6 months with 800 or 1600 mcg a day of Metafolin until, at the suggestion of somebody on one of the forums, suggested I try a much larger dose. I tried 4800mcg and it was like a miracle. The "glutathione detox response" symptoms started going away in hours. Now I am still trying to get back neurologically to where I was before the glutathione. So far 6 weeks on glutathione precursors has been a 2.5 year setback and I may not recover form that damage.
 

anne_likes_red

Senior Member
Messages
1,103
Hi Anne,

I was amazed at suddenly starting dreaming again, the very first night of Metafolin even though my body still had some folate deficiency symptoms and I was still taking folic acid.

It's good not to forget the potassium because that can cause all sorts of problems.

Interestingly, it was NZ where the study with lambs was done. When 6 week old lambs were given a single 5mg injection of mb12, their weight at harvest was 33% greater.

For me folic acid produced the beginning of deficiency symptoms in 3 days. It took a month for the folinic acid to do so and it came on more slowly with less impact, slowly and gently comparatively.

The chronic sinus problems are a known b12 deficiency problem. So is low energy. So are headaches. Have you ever compared all your symptoms to the list of symptoms?

Hi Freddd, yes I've looked at the list of symptoms, and I have quite a few of them.

The sinus problems didn't start untill 14 years or so into my illness - right after I had mononucleosis.
High dose Vit C always took care of the sinus symptoms, but if B12 is going to address the cause that's 1000 x better!

I'm taking no B complex for a few days, while I wait for my iherb order. Figured I may as well get folic and folinic out of my system before testing the high dose methylfolate again.

Anne.
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Hmm. This is kind of the problem....we're not comparing apples and apples.
I get funny brain sensations that I am pretty sure are metals being mobilised when I take modest amount of folapro and folinic and lots of B12....but I haven't chelated.
Anne probably has a lower risk of adverse effects with this protocol because she has already reduced her metal burden.
I couldn't do this kind of methylation support without having some chelators around. It would completely screw me up.

Agree with this. A few days ago I upped mb12 to 10mg and noticed some of the same brainfog/cog symptoms as I had from the IV returning. It's impossible to determine with any certainty yet, but I'm more convinced now that mercury methylation could be part of the picture for some people at these higher doses.

I've reduced mb12 to 7.5mg, also started adding some Folapro and seem okay so far at these levels, but I'm reluctant to go higher right now until either 'acclimating' more to 7.5mg or doing some chelation. Also added some selenium which might be helping. Clearing of sx w/DMSA could confirm Hg methylation hypothesis, but I would expect to get worse b4 better, so it probably still would be hard to say.

edited:

btw, Fred mentioned dreaming - not sure if it's related to adding the folapro or some other factor, but my dreams have been *intense* lately, and extended. Could be from EEG NF training I did a few days ago, not sure - so many factors in play - but just thought I'd mention it.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Agree with this. A few days ago I upped mb12 to 10mg and noticed some of the same brainfog/cog symptoms as I had from the IV returning. It's impossible to determine with any certainty yet, but I'm more convinced now that mercury methylation could be part of the picture for some people at these higher doses.

I've reduced mb12 to 7.5mg, also started adding some Folapro and seem okay so far at these levels, but I'm reluctant to go higher right now until either 'acclimating' more to 7.5mg or doing some chelation. Also added some selenium which might be helping. Clearing of sx w/DMSA could confirm Hg methylation hypothesis, but I would expect to get worse b4 better, so it probably still would be hard to say.

edited:

btw, Fred mentioned dreaming - not sure if it's related to adding the folapro or some other factor, but my dreams have been *intense* lately, and extended. Could be from EEG NF training I did a few days ago, not sure - so many factors in play - but just thought I'd mention it.

Hi Mr Kite,

not sure if it's related to adding the folapro or some other factor, but my dreams have been *intense* lately, and extended.


I hadn't had normal dreaming in about 20 years. And before that it always came and went in time with a whole lot of symptoms. I and many others have had restoration of dreaming, often the very first day or shortly thereafter, that Metafolin is taken. Each time I went into folate deficiency with the other symptoms starting up, the dreaming would stop, and then start up again as the specific folate deficiency symptoms go away again. One of the things that fades away over some months with the mb12 and Metafolin is the hypersensitivity to all sorts of things. It's hard to know the exact timing since the absence of something isn't as easy to know as it's onset. There are no trumpets announcing the last time something happens, especially if it gradually fades away. Sometimes one needs to allow time for things to change. I hope you get to experience those changes.

I have taken selenium since it became readily available, perhaps 20+ years, so I can't speak to the experience of mb12 without it.
 
Messages
25
I can't find one without folate here (NZ) Freddd, we just don't have a lot of choices - I checked everywhere last weekend.

But I just found this B Complex on iherb: MethylB12, and Folic Acid as 5-mthf.. (Surely thats mis-labelling and they mean Folate as 5-mthf.) It looks folic acid and folinic acid free to me.

http://www.iherb.com/Advanced-Orthomolecular-Research-Advanced-B-Complex-90-Veggie-Caps/33062?at=0

Otherwise I'm happy to look at ordering all the Bs separately.

Anne.

Hi Anne, just reading thru this thread AGAIN...I've a poor memory!! I'm up to forgetting what i read alsmost 2 days ago, or sometimes seconds ago..
I think I can still reason at times at least until I forget where I'm up to in my train of thought
anyway- I'm also looking for a good multi to replace my Coenzymated B complex from Source naturals (sublingual) which has folic acid in it, but so far sticking to that one..although I've a few old custom made multis around as well (unsure if I included folic acid though at the time)
what I don't like about that multi..I wish it was not so as otherwise that multi is ideal... is the 5-MTHFR.

I suspect this is the racemic form and, if so, will cause problems (according to studies with blood tests). The problems actually occur when you later (a week later in the study) take folic acid!! Its a tad complicated buit I suspect that may be what is happening with people on here IF they have previously taken a folnic acid or a racemic 5-MTHFR..and I'm unsure about folic acid myself.. it depends on what it is, the additive to food is not the same chemical that naturally occurs in food and I'm unsure what is in individual supps or if always the same...
I posted the full explanation on another forum , but somehow it didnt make it thru moderation..even the 2nd attempt so far
I'll try to post it here when I get the energy..or better still put it on my blog and link to it..that way I wont have to spend many hours retyping/formatting it each time :)

Edited: it's here. I appears to fit the effects Freddd is feeling, but of course , that does NOt mean it IS the actual cause, just a possibility. Look at the graphs ofd the 6R after the racemic 5-MTHFR had been used (a week before)., and if it(or folinic racemic) had never been used. That's an unenplainable obvious difference, and enough "proof" to stop me using weither of these supps ever again.
http://tealady-health.blog.co.uk/20...-mthfr-and-folinic-may-be-dangerous-11203372/
Just check I suspect the 5-MTHFR is No longer the same as the 6S-5-MTHFR ONLY but has the 6R form as well (its the 6R form that gets stored in your liver and our bodies dont appear to excrete as well and gets relased on taking folic acid!!! sigh
I threw away my bottle of 5-MTHFR and folinic acid(which does the same) when I read the studies. I had originally researched this back in 2003(but got lost with the methylation so decided to go and learn some VChemistry at uni and bilogy etc, and biochem etc..gave up as I realised I'd never learn enough in my lifetime but perhaps it helps me understand a little), and I suspect before the patent they supp companies actually used the l form.. and now they can't??
The Metafolin recommended has been unavaliable at iherb while I've been looking (past week or so). EDited to add: available now and I've ordered some Solgar brand Metafolin.

Of course if the 5-MTHFR is the l (L) form (or 6S- form ONLY as in the patented Metafolin) then this is great stuff. It needs to be checked though...
Sorry for the typos, hope you can make out the post..I'm very tired


edited to add direct link to graph (main point)
http://onlinelibrary.wiley.com/doi/10.1038/sj.bjp.0705446/pdf pp 4, graph on RHS
the bottom line(sits on zero all the way is IFF they had never taken the racemic 5-MTHFR before (same applies to folinic in my understanding, but hey I could be wrong)
so that's my concern and why I threw out my bottles of 5-MTHFR and folinic acid.
 
Messages
25
That leg pain maye low thiamin in shins especially.. or a really "heavy" feeling in lower legs like they are sinking or pain in shin bones? only mention as B12 depletes thiamin..and some peoples mulits here are only using thismin nitrate..(and that doesnt work for many as nitrate depletes the thiamin..dumb combo if ever I sawy one!). Just a though IF you can't find any othert answer. The good combo of injection in Oz used to be B12, B6 and B1 ..many folkrecovered from MS symptoms in the 1950's with that one and a doctor who used it, I've read. Benfothiamin is good. Thiamin hydrochloride about 100mcg daily... or you can if really necessary also get ampoules for injections. Unsure if its what is happening with you though as you get very tired on low B1, and its the shin bones usually..and then weight loss (or failure to gain), then loss of musclesin lower limbs first I think?.. the tinglinglike B12.. I never know for sure, but I havefigured oput I do a lot better with B12 if I take B1 first (I really cant do it otherwise)
 

anne_likes_red

Senior Member
Messages
1,103
Hi tealady, I've only just read your message :)
I'm doing well on that B complex, but I'll investigate the other forum (WD) and check out your other posts.
Best,
Anne.
 

anne_likes_red

Senior Member
Messages
1,103
Hi Freddd,

I'm not sure which thread it's best to post an update in.

I experimented again with higher dose 5mthf (400mcg per 4 hours for 2 days). This time my high dose trial was 2 weeks away from any supplemented folinic acid and 6 days away from any supplement containing folic acid.
The effect was the same as before - no change over taking a much smaller dose per day.

I had what I think was a significant negative reaction (severe anxiety, panic, and insomnia) when I dropped all folinic acid and replaced it with extra folic acid so that I could continue taking a B Complex while waiting for my AOR (non folic and folinic version) to arrive.
I took out the B Complex containing folic acid, and everything else containing folic acid. Then I started reacting more to the methylB12. I had to drop right back to 250mcg and work up to 1000mcg and that's where I am now, along with the 2000mcg hydroxyB12 drops per Rich's protocol. There was no change on starting the AOR B Complex, but my sleep remained disrupted with only 4 - 5 hours of broken sleep every night.

Then I re-introduced a small amount of folinic acid (in acti-folate) 3 days ago and I started sleeping a solid 7 - 8 hours at night again. I take nothing else to help me sleep and the small amount of folinic was the only change.

6 weeks ago when I added folinic in on top of folic and 5mthf my sleep improved significantly too. I couldn't put it down to the folinic acid then because I started a couple of other things around the same time.

I think for me avoiding folic acid is best, but folinic acid - at least the small amount I'm taking - appears to be benefical.

Hope that makes sense!

Anne.
 
Messages
25

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
I have only read the first page of this thread and thought it might be easier to ask some questions instead of trying to search for it, im lazy i guess.

Anyway, supplements of folic acid as well as supps that increase glutathione(nac, lipoic acid??) can cause a folate type defiency?? SO am i best to avoid all doses of folic acid as alot of multiple compound supplements have 400-800mcg of folic acid? or are small doses of folic acid in these mutvit formula's ok? And metafolin from solgar would be a better choice for folate?

Could this be why i dont get much out of methylation type protocols, had some help with hydroxy b12 injection and now use methylb12 jarrows sublingual tabs.

cheers!!!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have only read the first page of this thread and thought it might be easier to ask some questions instead of trying to search for it, im lazy i guess.

Anyway, supplements of folic acid as well as supps that increase glutathione(nac, lipoic acid??) can cause a folate type defiency?? SO am i best to avoid all doses of folic acid as alot of multiple compound supplements have 400-800mcg of folic acid? or are small doses of folic acid in these mutvit formula's ok? And metafolin from solgar would be a better choice for folate?

Could this be why i dont get much out of methylation type protocols, had some help with hydroxy b12 injection and now use methylb12 jarrows sublingual tabs.

cheers!!!

Hi Heapsreal,

anyway, supplements of folic acid as well as supps that increase glutathione(nac, lipoic acid??) can cause a folate type defiency?? SO am i best to avoid all doses of folic acid as alot of multiple compound supplements have 400-800mcg of folic acid? or are small doses of folic acid in these mutvit formula's ok? And metafolin from solgar would be a better choice for folate?

I have found that for me and at least some other people that 400mcg of foilic acid can block 4800mcg of Metafolin or thereabouts. Small doses in multivitamins and even in foods appear to cause some people to have paradoxical folate deficiency. I would expect the range and sensitivity to folic/folinic acids and their problems to vary considerably. Metafolin appears to work for everybody. Metafolin is a form of stable methylfolate patented by Merck who licenses it to Solgar and other makers who adhere to their high standards and whom they can make enough to supply. Getting the methylation cycle makes glutathione. The items I am suggesting avoiding are the direct precursors like NAC and L-glutamine which can generate unnatural levels of glutathione. NAC especially, since it by itself can cause the same problems. These items cause the same folate deficiency symptoms for entirely different reasons.

Could this be why i dont get much out of methylation type protocols, had some help with hydroxy b12 injection and now use methylb12 jarrows sublingual tabs.

NAC, glutathione and some other things, can prevent Metafolin, methylb12, adb12, hycbl etc all from working. A 5 star Methylb12 normally has a lot more activity than hydroxcbl. Adb12 is more active in its own way than hycbl.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd,

I'm not sure which thread it's best to post an update in.

I experimented again with higher dose 5mthf (400mcg per 4 hours for 2 days). This time my high dose trial was 2 weeks away from any supplemented folinic acid and 6 days away from any supplement containing folic acid.
The effect was the same as before - no change over taking a much smaller dose per day.

I had what I think was a significant negative reaction (severe anxiety, panic, and insomnia) when I dropped all folinic acid and replaced it with extra folic acid so that I could continue taking a B Complex while waiting for my AOR (non folic and folinic version) to arrive.
I took out the B Complex containing folic acid, and everything else containing folic acid. Then I started reacting more to the methylB12. I had to drop right back to 250mcg and work up to 1000mcg and that's where I am now, along with the 2000mcg hydroxyB12 drops per Rich's protocol. There was no change on starting the AOR B Complex, but my sleep remained disrupted with only 4 - 5 hours of broken sleep every night.

Then I re-introduced a small amount of folinic acid (in acti-folate) 3 days ago and I started sleeping a solid 7 - 8 hours at night again. I take nothing else to help me sleep and the small amount of folinic was the only change.

6 weeks ago when I added folinic in on top of folic and 5mthf my sleep improved significantly too. I couldn't put it down to the folinic acid then because I started a couple of other things around the same time.

I think for me avoiding folic acid is best, but folinic acid - at least the small amount I'm taking - appears to be benefical.

Hope that makes sense!

Anne.

Hi Anne,

It makes a lot of sense. I would expect to see a whole range of responses to folic and/or folinic acids. It's possible that folinic acid might benefit up to it's limit of conversion and then block after that by reason of competition. I would love to have the information on 10,000 people to map out the response types and ranges.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
The Latest on Paradoxical Folate deficiency - single 3.4mg dose of folic acid

In my testing of Source Naturals Dibencozide, after 2 months on SN dibencozide, I had to try a 51mg challenge dose of Country Life Dibencozide which includes 3400mcg of folic acid which may be absorbed by mucosal contact and when swallowed. This is the ONLY folic acid or folinic acid I have had in a month or more. I do continue to eat veggies and am able to use enough Metafolin to compete with veggie food source folate and not have any noticeable active symptoms. Within 12 hours of this 3.4mg dose of folic acid, even with a preloading dose of 2400mcg of Metafolin and another 1600mcg while the 51mg dibencozide dose was in progress as part of a daily dose of over 11,000mcg, the sting was back in the angular cheilosis which worsened for 2 days before subsiding. So, a single dose can cause the paradoxical folate deficiency for a couple of days disrupting cell reproduction if the dose is large enough.

I am not ready yet to rate the Source Naturals Dibencozide but so far it appears more or less equivalent in every important way to the Country Life. I have two more tests to do at 1 month intervals so I will have a final report and rating by mid September.