Has anyone tried high-dose folinic acid?

[dannybex]

…as mentioned in this thread from last year:


http://forums.phoenixrising.me/inde...l-to-81-of-cfs-patients-plus-biomarker.21745/


Also, has anyone been tested for folate auto-antibodies?

 

[globalpilot]

Yes, I have tested for the auto-antibodies and they were negative. They are very well worth testing for, as if you have them, you need very high doses of active folate.

Did you say in another thread you are taking folinic and it is helping ? I notice in the study you posted they are taking 25mg 3-4 times a day, much higher than the amounts in Rich's protocol. I have only ever taken 800mcg folinic.

 

[dannybex]

Yes @globalpilot , I was taking folinic -- but very sporadically this year -- and have paid the price. I have notes of ordering it nine times from November 2012 to December 2013, and was doing 'better' during that period, although I started to lose some weight around October of 2013 (mostly superficial belly fat).


My next order was late April 2014 -- and then early July -- and that's it. I attributed some extreme irritability to the folinic in late July, when it was probably due to a couple of different supplements that are high in choline, which in hindsight I don't think I tolerate well. And that could be because one needs sufficient b12 (and carnitine) for the enzyme that breaks down acetylcholine -- and I hadn't been taking b12 as well hardly at all this year.


During the last year I've lost a lot more muscle (and I'm extremely thin to begin with), so now I am almost housebound, and have to use a wheelchair to get my mail in the building -- a huge building. They have shuttles to take us to the grocery store, but I haven't been able to do that since about April or May…due to being so weak, losing more muscle. Plus, since about May or so, I developed an increasingly stuffy nose, and either dry or runny, goopy eyes. I've had the dry eyes off and on before (and the chronic sinus issue) but this has been a long, six-seven month ordeal, and just realized that methylation is one of the key ways that histamine is broken down, so will see if it helps. ???


It is indeed interesting that the dose of folinic is so high in that study. Even higher than some with the auto-antibodies are reported using. And no mention of b12 or potassium…


???


p.s. One thing I read the other day was that folinic has a half-life of 6-7 hours. And one person was finding that she needed to take it based on the half-life in order to find benefits. She also said it was her experience that the methylb12 made a difference as well. She started with the methylb12, but it wasn't until she took high doses of folinic, that she got better. Her doses varied over a period of a year, and eventually was able to lower them both, but in her case the had the auto-antibodies, and needed to cut out dairy in order to be able to lower her doses.

 

[dannybex]

Bumping...

 

[Hip]

They used enormous folinic acid dose levels in the study (see page 401, bottom left): they gave the ME/CFS patients 25 mg (= 25,000 mcg) of folinic acid 3 to 4 times daily. So that is a total of 100,000 mcg a day.

Compare this to the folinic acid dose recommended by Rich Van Konynenburg in his simplified methylation protocol, which is just 200 mcg once daily.


This very high dose folinic acid is sold as a drug called leucovorin, which is quite expensive (for example, this online pharmacy sells 30 x 15 mg tablets of leucovorin for $186).

Folinic acid bought as a vitamin supplement costs around $10 for a jar of 120 x 800 mcg tablets. But if you were to use this for your daily dose of 100,000 mcg of folinic acid, you would use up one of these 120 tablet jars every day.

 

[dannybex]

Thanks @Hip -- yes, incredibly high doses. I think I posted that study somewhere on PR a year or two ago.

Those high doses was one of the main reasons I'm wondering if there is anyone on PR that has tried this, or even something 1/10th of that dose. I'm kind of surprised that it seems like almost no one has (including myself!).

Maybe I would if I weren't living alone. Would be nice to have some support and/or help if I had negative reactions.

But again, re-reading the study, even with those monstrous doses, out of 42 patients, "No patient reported side effects from folinic acid."

???

 

[PeterPositive]

But again, re-reading the study, even with those monstrous doses, out of 42 patients, "No patient reported side effects from folinic acid."

Maybe they couldn't because they were knocked unconscious...

 

[Hip]

@dannybex
What is unclear in the study is the degree of improvement that the ME/CFS patients had. Saying that 81% of patients found leucovorin (very high dose folinic acid) beneficial does not tell you anything about how beneficial it was.

If there were great benefits to be had, I think people might be tempted to try some leucovorin.

 

[dannybex]

Maybe they couldn't because they were knocked unconscious...

Yeah, that's (almost seriously) what I'm wondering. I've taken folinic, and it seems to calm me down, definitely helps me sleep -- a very good thing is one has been constantly and extremely wired but tired for years. It doesn't seem to cause the excitation that methylfolate does. But if I took 100 times the dose?

 

[dannybex]

@dannybex
What is unclear in the study is the degree of improvement that the ME/CFS patients had. Saying that 81% of patients found leucovorin (very high dose folinic acid) beneficial does not tell you anything about how beneficial it was.

If there were great benefits to be had, I think people might be tempted to try some leucovorin.

Exactly. The study is vague. I've tried to email one of the authors (but damn, that copy of the study is such a poor copy I don't know if I got it right), so will let you know if I hear anything.

 

[PeterPositive]

Yeah, that's (almost seriously) what I'm wondering. I've taken folinic, and it seems to calm me down, definitely helps me sleep -- a very good thing is one has been constantly and extremely wired but tired for years. It doesn't seem to cause the excitation that methylfolate does. But if I took 100 times the dose?

Indeed... I take a tiny bit of folinic (150mcg) from my B complex but for the rest I stick with methylfolate, due to a double MTHFR mutation (c677t). Indeed the latter can cause anxiety at times, while folinic doesn't seem to do that (although I have never taken more than 300mcg, which is not much)

 

[ebethc]

Is it better to take folinic acid if you're sensitive to methyls? I believe that one of my SNPs indicates that I'm sensitive to methyls... I'm also prone to anxiety, so it could be helpful there...

the article was interesting - I have EBV, and believe that I may have some kind of B cell dysfunction because I tested negative to ALL allergies (serum and skin), have no thyroid antibodies but believe my hypoT is caused by hashimotos; and had mono in 2001 but tested negative for the mono test... 2nd question: how do you test to confirm that you're B cell function is dysregulated so you don't product antibodies? (if at all)

 

[Ema]

question: how do you test to confirm that you're B cell function is dysregulated so you don't product antibodies? (if at all)

You would get your IgG level (total and subclasses 1-4) tested.

 

[Critterina]

Is it better to take folinic acid if you're sensitive to methyls? I believe that one of my SNPs indicates that I'm sensitive to methyls... I'm also prone to anxiety, so it could be helpful there...

the article was interesting - I have EBV, and believe that I may have some kind of B cell dysfunction because I tested negative to ALL allergies (serum and skin), have no thyroid antibodies but believe my hypoT is caused by hashimotos; and had mono in 2001 but tested negative for the mono test... 2nd question: how do you test to confirm that you're B cell function is dysregulated so you don't product antibodies? (if at all)

@ebethc ,

Are you +/+ for everything in your signature??? I never got to high dose folinic because a regular dose was so hard on me. I'm not CFS, not EBV, not most everything, but I do have MTHFR A1298C +/-. I had a hard time keeping awake after I took folinic acid. I fell asleep repeatedly on an outdoor tram tour of an air museum. And I'm the type that only naps when I'm really sick. No lasting effects, though.

 

[ebethc]

@ebethc ,

Are you +/+ for everything in your signature??? I never got to high dose folinic because a regular dose was so hard on me. I'm not CFS, not EBV, not most everything, but I do have MTHFR A1298C +/-. I had a hard time keeping awake after I took folinic acid. I fell asleep repeatedly on an outdoor tram tour of an air museum. And I'm the type that only naps when I'm really sick. No lasting effects, though.

I'm +/+ for the stuff on the first line, +/- for the stuff on the second line... so, MTHFR a1298c +/-

I took and few and they made me very mellow... I was tired today anyway. At first I felt relaxed but better, and now I just feel sedated. I haven't been eating right this week (it was my birthday) so it's hard to tell... I might just try it at bedtime, then take a m-folate in the a.m. my brain fog kills me..

 

[Critterina]

I'm +/+ for the stuff on the first line, +/- for the stuff on the second line... so, MTHFR a1298c +/-

I took and few and they made me very mellow... I was tired today anyway. At first I felt relaxed but better, and now I just feel sedated. I haven't been eating right this week (it was my birthday) so it's hard to tell... I might just try it at bedtime, then take a m-folate in the a.m. my brain fog kills me..

Ok, so we are the same on the MTHFR A1298C, and we're the same on the reaction - at least the direction of the reaction. I decided not to continue taking it because, even though there is controversy about the mechanism of some biopterin/glutathione effect, it seemed like it would keep my body from doing something it's not doing well to begin with. But I respect your decision and would like to hear how it works for you after a few days or weeks. I didn't think about taking it at night, but...maybe that was a symptom of brain fog.

 

[ebethc]

... there is controversy about the mechanism of some biopterin/glutathione effect

how does it affect biopterin / glutathione? how does biopterin affect glutathione? thx

 

[sflorence]

Hi all. Has anyone had benefit from folinic acid here?

Ever since the Freddd protocol I have had a weird body depression, some days it is unbearable. I think I have narrowed it down to the methyfolate causing me problems, I am going to try to replace it with folinic acid.

 

[littlebird6180]

Hi all. Has anyone had benefit from folinic acid here?

Ever since the Freddd protocol I have had a weird body depression, some days it is unbearable. I think I have narrowed it down to the methyfolate causing me problems, I am going to try to replace it with folinic acid.

Did you ever try it? I just started it and have only taken one dose of 800mcg and noticed a remarkable surge in my mood and on overall calm feeling. I've been struggling with depression as a result of being chronically ill and my doctor really felt strongly this would help given my health history.

 

[dannybex]

Same here. It helps me sleep big time, and also helps with sensitivity to sound.