High Dosage methylfolate users

[Victronix]

Looks like I'm going to top the list!

Then I was hesitant to start on the rebounder because my balance was so poor. I was tremulous, a nervous wreck, unstable, weak, off-the-charts reactive to noise, smell, heat, the most minimal sorts of stress, my thermostat was totally off w/ over-heating. No more.
Also, brain fog essentially gone, tho I atribute this a lot to detx as well. No pain in arms, I can type all I want. I can Think!

This is wonderful to hear! Those symptoms of being totally on edge in terms of stimuli like noises, and thermostat being off, is very much about raw nerves, it seems to me, as that's what I've gone through myself and have affected with B-12. Good for you!

 

[whodathunkit]

@ahmo: Have fun on your walk, let us know how it goes!

 

[Laurel6123]

I've been lurking-and learning- for several months, but I'll chime in...I've been on 10mg folate, 2 g LCF, 10mg AdB12, and somewhere between 7-12 mg mb12, plus 1 homocystX, and potassium as needed, usually alkaseltzer good, as that kills pregnancy-related heartburn and adds K: two birds, right?

Was recently struggling with severe prenatal depression, added additIonal Mb12 and 100 mgs B2 (aware of absorbtion limitations, just highly limited on what could be found locally). Additional B12 and B2 have lifesavers-went from near-catatonic despair to productive and motivated in the space of about three days.

Guess maybe I'm a bit luckier in that my symptoms have been more psychological as opposed to physical, and have had the awful startup reactions some have fought.

 

[place]

Laurel, your taking it with pregnancy? I hope so, as I plan to do so soon, hopefully = ). What are you all taking? Thanks so much in advance!

 

[Sea]

I've been lurking-and learning- for several months, but I'll chime in...I've been on 10mg folate, 2 g LCF, 10mg AdB12, and somewhere between 7-12 mg mb12, plus 1 homocystX, and potassium as needed, usually alkaseltzer good, as that kills pregnancy-related heartburn and adds K: two birds, right?

Was recently struggling with severe prenatal depression, added additIonal Mb12 and 100 mgs B2 (aware of absorbtion limitations, just highly limited on what could be found locally). Additional B12 and B2 have lifesavers-went from near-catatonic despair to productive and motivated in the space of about three days.

Guess maybe I'm a bit luckier in that my symptoms have been more psychological as opposed to physical, and have had the awful startup reactions some have fought.

Hi Laurel, welcome, do you have a diagosis of ME/CFS or something else? What brought you to supplementing folate etc?

 

[Sea]

I'm currently taking 4mg methylfolate and 3-10mg Methyl B12 daily
as well as
a B Complex daily and 5-10mg Adenosyl B12 twice a week.

I've trialled up to 4 Dr's Best LCF 855mg daily (that's 2g L-Carnitine) and I've tried ALCAR. Neither seems to have any effect at all for me so I'm still wondering what to do with this.

I've been on these doses for several months and am contemplating raising the folate. I get face and scalp acne if I miss a dose or if I take anything with depletes folate (painkillers or antacids)

 

[Laurel6123]

Huh. Turns out I can't quote on an ipad SOOO...

@place - the list of sups I'm taking/have taken would choke a horse; iodine, selenium, a, d, fclo, p5p, mhtf, microcrystalline hydroxyapatite (mineral supp), tmg, berberine, herbals, homeopathics, on and on. I've narrowed it down to what I listed before, plus fclo when I remember it. Due in August, I'll let you know if P comes out with tentacles or something ;-) (highly unlikely, IMO, all joking aside, I think the risk of NOT addressing methylation issues is more damaging than the sups with which to treat it...$0.02)

@Sea - thanks no diagnosis aside from the old standby-"you're fine, it's all in your head, here, have an antidepressant" <eyeroll>.

I had a massive amount of stress about two years ago-between February and June of '12, I lost a job due to a corporate buyout, got a new job, moved 80 miles, had a boyfriend go from Mr Wonderful to threatening to "relieve" me of my son and "have it out" with me in private, restraining order that was denied because 'military guys don't lie' (ha!), got laid off after three months, and moved (again) over 100 miles, and haven't been well since.

Put on 50 pounds in that same four months, and have been searching answers since. Had a diagnosis of hypopituitarism, which seems to have resolved itself with proper thyroid and b12 supplementation, and ran a 23andme on the spur of the moment for my son and I, and found Freddd and his deadlock quartet, and voila!

(Of course, I'm pretty sure that those four sups are the reason I got pregnant (oops!) but DF and I were pretty tickled about it, so what the heck.) Oi. Life story, sorry.

It's not been all roses, had some pretty bad depression-embarrassingly bad-but it's dissipated for now, hooray for that. I get scalp/neck acne randomly too...hadn't connected it with mthf, but I wonder? Hmm. Re:the heartburn, the alkaseltzer Gold has been awesome-aluminum free, effective, and supplies potassium. It's a little hard to find, but otherwise, a keeper.

Trying to line out the rest of my SNPs and then I can start on my sons, lucky little wart got the best of me and my ex husband, he has a fraction of mine, and it appears nothing mb12 and extra D won't fix.

(Sorry for the novel :-/)

 

[zzz0r]

@whodathunkit Are you taking methylfolate and what dosage ?

 

[skwag]

I'm currently taking 9.6 mg methyfolate, 14 mg Mb12, 3mg Adb12, and 855 mg LCF. I've lowered everything but the folate a little recently and haven't noticed too much difference.

At 4-5 mg Folate, I was going in and out of folate deficiency ( angular chelitis, acne type lesions on scalp...) The horizontal grooves in my thumbnails provide an excellent record of folate deficiency. The deeper groves are all grown out and cut off now, but there are still some barely noticeable ones that have developed even on 9.6 mg folate, Maybe a higher dosage or more frequent dosages are in order ( I currently take 4.8 mg morning and before dinner ).

Hope this helps.

 

[Laurel6123]

What brand is most cost effective for the quantity?

I ordered metabolic maintenance the first go, as I had no idea what I was doing (pre-PR discovery) and I need to reorder soon; what has been you experience?

Ideally, I suppose, 5 mgs would be it, for twice-a-day dosing.

Any suggestions?

 

[place]

Laurel! I was so worried about getting pregn and not being able to stay on stuff. I agree, it's far worse if you don't take it for both of you!

I take solgar Folate 800. Just checked prices Amazon and vitacost 12.50, Iherb- 10.somthing

Also, heartburn, I have been taking care of mine with a pepermint candy. It does the trick for me. The heart burn meds just gave me more heart burn.

 

[lef07003]

Okay everyone I have a question. I may not have a choice here so hopefully no one writes that it will have dire consequences. I am going on TPN (feeding) . three days a week they include a multi vitamin which has folic acid and cyano. But it has a lot of other things I need. (I may not have say on this anywayd and don't know if I should be concerned about things like this at this moment in time give in the current state I am in) I could still get methyl injections if I wanted from my dr but the pharmacy can't do individual vitamins. Should I try to insist on skipping the vitamins? Or can I counteract this with taking methylfolate. I have the mthfr a1298c hetero mutation.

 

[whodathunkit]

@zzz0r: I was going to post last night but 1) didn't want to unseat @ahmo from the high-dose "throne" so quickly , and 2) wanted to check something myself first.

BTW, I do not consider high-dose folate to be a contest. I was joking about the "throne", just to poke ahmo a bit. It's not about who takes the most, it's about what makes you feel better.

Anyway, I currently take 26.4mg (33 800mcg tabs) of methylfolate, in divided doses 3x/day. I take 5ml injectable methylcobalamin in the morning with my first dose and then a few tabs infused in cheek & gum with the other doses later in the day.

I ramped up my doses radically and quickly when I experienced severe paradoxical methylfolate deficiency symptoms a week or two after starting Freddd's regimen. It worked. I immediately started feeling better and have been doing quite well ever since. At one point I was taking 40mg/day, but then ramped down to the current dose. I've been at this dose for several months now. Worth noting is that when I ramped up folate I had to increase potassium intake, as well, because I expereinced some symptoms of potassium deficiency.

I've been what I consider to be stable ever since. A few ups and downs and I've experimented with this and that but no more crashes or paradoxical deficiency symptoms. I also no longer need much extra potassium at all, even though I'm still taking a big dose of folate. Some days I don't get any potassium other than what I eat in food, and I'm fine. Other days I fee like I can use a small dose of powder in juice, so I do that. It's like everything stabilized.

I'm still taking such a big dose of folate even though I'm stable because I'm working on some other health problems besides methylation that large doses of folate might help. So far the folate seems to be helping these other health problems (nothing else ever has), so I'm going to keep at it for another 6 months. I'll be glad when I can ramp down my dosage, however, because this dose of folate is *expensive*.

Yesterday I added some SAM-e to my regimen (took it in the morning), because now I'm used to feeling good I'm wondering if I can tweak things a bit and feel a bit better still.

Interestingly, I developed minor IBS symptoms yesterday afternoon. I took a few extra tabs of folate and a probiotic pill and it seemed to resolve. I'm fine right now. This is why I was waiting to post in this thread...to see if an extra bit of folate helped resolve the little IBS symptoms I seemed to develop from the SAM-e.

I remember Freddd said certain B vitamins could drive an "insatiable" need for folate, so I'm wondering now what role the "easy" methy donors like SAM-e play in driving the need for folate.

People frequently blame larger doses of methylfolate for problems, when maybe the folate isn't the problem at all. It's other stuff.

It's a puzzle, for sure. I'm going to experiment a bit more to see if anything comes to light to make sense.

 

[zzz0r]

Mthfr a1298c has not a major impact. However cyanocobalamin is totally useless and folic acid MUST be avoided at any cost. At least in my opinion

 

[lef07003]

Do you think it will be okay if it's just a short time period

 

[zzz0r]

As long as you feel alright

 

[whodathunkit]

@lef07003: @zzz0r is right. Folic acid can actually block the methylfolate from working. I can't remember if it blocks receptors that methylfolate uses, or exactly how the blocking works, but suffice it to say that it does.

Folic acid can also give you a false high serum level of folate, which can mislead medical practitioners to think you're getting all the folate you need, when in reality it's just circulating in your bloodstream and not getting into your cells where it's needed.

Also, I have personally found cyanocobalamin to be of zero use. It's said that cyano can also block the action of methylcobalamin.

However, if it's only for a short time you'll probably be okay and the benefits of the feeding probably outweigh any harm done by the folic acid and cyano. I think for a short time you needn't worry, and after your done with the feeding then try to stay away from folic acid and cyano after you get over this crisis (whatever it is).

 

[Laurel6123]

Should I try to insist on skipping the vitamins? Or can I counteract this with taking methylfolate. I have the mthfr a1298c hetero mutation.

I am also hetero a1298c, and I can tolerate small amounts of folic acid and cyanocobalamin. That may be because I am taking such a large dose of folate and other B12's, but I freely admit to not having a clue what the he!!! I was doing when I started, and by the grace of God, haven't had any problems with tolerance/etc that I am aware of.

If you can skip the vitamins, I would absolutely do so. But. As I understand it, folic acid is not as crucial with 1298 as it is with 677, so if you cannot I wouldn't lose sleep.

(I wouldn't be surprised of you cannot because most TPN is prepackaged and premixed and less than optimally nutritious).

Now, keep in mind, that is stated without knowing your other SNPs, so there may be a game changer in there that I am unfamiliar with.

 

[Laurel6123]

Also, heartburn, I have been taking care of mine with a pepermint candy. It does the trick for me. The heart burn meds just gave me more heart burn.

I have a fairly severe hiatal hernia and get heartburn to the point of vomiting even while sitting upright. Regular chiropractic adjustments keep it controlled, but when it's bad it is awful.

Have you considered that perhaps you have low stomach acid and actually need more? Pre-preggo a bit of apple cider vinegar with a little honey would fix any heartburn I had. Something to try, maybe-low stomach acid can wreak all sorts of malabsorptive havoc.

 

[place]

Laurel- it may be the SAM-e but, I am just so thankful you decided to post! I have been working on getting my stomach and digestive track up and going this past month. I am allergic to apples, i think its the mold in the apples, but have also heard of lemon juice doing well for that too. I will try the apple cyder vinegar first. then lemon.