Paradoxical Folate Deficiency/Insufficiency and Edema

[Freddd]

The body is said to have a "triage" system for distribution, or maybe utilization of, b12 and folate. Healing can turn on with methylation and ATP startup and yet deficiency symptoms can worsen on other layers. The placement of edema within a layer can be done by the symptoms set it responds with; angular cheilitis, IBS and acne type lesions, and others, depending upon duration and severity of insufficiency.

For me the comings and goings of edema were very mysterious without a framework. It came and went at various times in my life. Five years of watching the comings and goings of paradoxical folate insufficiency it became clear that the first symptom to appear was edema and evidenced by weight gain. It was also the first symptom to clearly reverse upon a sufficient dose of Metafolin.

This was after all other nutrients were in place including the Deadlock Quartet of AdoCbl, MeCbl, L-methylfolate and L-carnitine fumarate; basic vitamins and minerals, fats etc. I ran into trouble when my diuretic started working too well. It turns out I didn't need it at all any more. I was out of folate insufficiency by that time about 3 weeks a month, enough to take the water off. Just these past months after reducing B1, B2 and B3 to what was in a moderately low dose b-complex twice a day I have been consistently out of folate insufficiency for months now. It's a delicate balance all the way around.

Edema appears to be a more sensitive indicator to me than angular cheilitis for folate insufficiency, being obvious 2 days sooner. Reading around the forums here edema is mentioned with some frequency and ascribed to all sorts of causes, who knows how many of them correct or maybe correctable. After decades I had never thought that it was correctable.

Have any others had the end of edema with the end of folate insufficiency or turning on and off with other symptoms?

 

[PeterPositive]

Hi Fredd,
very interesting subject. I am dealing with edema in my knees and feet, have tried many different approaches to solve it but none worked, not even lowering the symptom. What was the sufficient dose of metafolin that worked for you?

I've started with metafolin recently after the 23andMe test reported an MTHFR C677T +/+ mutation. Currently I am on 800mcg without any noticeable side effects (+1g MB12 and other active Bs)

I am not using L-Carnitine fumarate at the moment because my current doctor has never mentioned it and I doubt he knows about the deadlock quartet. Is the specific "fumarate" (w/ fumaric acid) the only proper way to take this supplement? Or any form of L-Carnitine would be equally effective? (e.g. free form)

Thanks
P

 

[cph13]

I too have edema of the feet. I've upped my folate to "now" 4 a day. Desperate I've upped adenocbl b12 to untraveled roads. Mood is horrible. Sleep as well. Months ago mood and sleep were getting better. As I'v posted; I've lost that lovin' feelin'. I've gone down and I've come up. I am using the simple B-comp by NM as U recently suggested Fred. the results of my Amino Acid serum test shows High:
Aspartic Acid, glutamic Acid, glutamine, sarcosine, taurine and ornathine ridiculously elevated, alpha amino buytric
Low:
tryptophan n almost undetectable Arginine. Dr. suggested taking 6grams of arginine and 5-htp. The later has helped the sleep...the arginine???? nada.

I've been to a vascular dr and I am goin' to another who, I hope, will not be knife happy and give me a doppler to make sure all is well. I am taking the deadlock Q. I just ordered the Sigma Tau LCF. I was taking a 1,000 mg dose but not sigma tau as I had in the past. The delicacy of this protocol is mind boggling. I have been fooling with this since late 2011. The end...when will the balance and "the end" come. I can't complain when I think of you though, Freddd. Happy healing xo C
PS-comments always welcome.

 

[skwag]

I'm not sure if edema is a symptom of mine or not. It's certainly not bad, but I do notice varying levels of indentation from socks around my ankles and varying degrees of facial "puffiness" in the mornings. The worst swelling of my ankles would occur after airplane flights ( haven't been on one in years ) so I never thought to think of it as a symptom related to the protocol. Right now, I do have a bigger indention in my ankles ( from socks ) than I would consider absolutely normal. I'll keep my eye out for a pattern now that I know to look there.

 

[Freddd]

I had an extra 85 pounds of water at my worse. I was on diuretics for about 10 years. It was only in the 10th year that all the excess water came off and I became too dry, which started a lot of cavities in my teeth. So it took a number of years of AdoCbl and LCF to heal my heart to the point it could pump strongly enough. Then at that point when I eliminated paradoxical folate insufficiency at least 3 weeks in 4, edema increased and decreased with the folate deficiency symptoms.

 

[skwag]

@Freddd

How severe is the edema that you have been experiencing recently ( with folate insufficiency absent 3 weeks out of 4 )?

 

[Freddd]

With the last episode of folate insufficiency, I gained about 5-6 pounds in 3 days and lost it again in 5 days. So it wasn't severe at all. The problem comes in when I gain 2-3 pounds a day. In the years gone by I also had atrophy of muscles so the muscles were melting away into waterlogged fat. Last year when I dropped 30 pounds very little of it was water. I had already tapered the diuretic and was maintaining in folate sufficiency for the most part. I made a couple of mistakes and ate too much from the garden and had a couple off episodes of folate insufficiency

 

[Phred]

I too have edema of the feet. I've upped my folate to "now" 4 a day. Desperate I've upped adenocbl b12 to untraveled roads. Mood is horrible. Sleep as well. Months ago mood and sleep were getting better. As I'v posted; I've lost that lovin' feelin'.

I just wanted to say to make sure you're getting enough vitamin d. I had stopped taking it in the summer because I was getting enough from the sun. September I went back to school so I wasn't in the sun as much and I was feeling that black hole again. I finally put two and two together and started taking just 2000 IU a day. It was like coming out of a black cave. My sleep improved a little (only a little) too. So if you haven't been doin' the d, give it a whirl.

I had an extra 85 pounds of water at my worse. I was on diuretics for about 10 years. It was only in the 10th year that all the excess water came off and I became too dry, which started a lot of cavities in my teeth.

@Freddd What do you mean by too dry? It's really cold and dry here right now, but my skin seems excessively dry. I'm definitely getting those marks on my skin from socks that someone else mentioned. Also my knee is all kinds of swollen messed up. I just increased my folate by anther 800mcg. I take my folate 4 times a day and I'm dividing that extra pill between the 4 doses. If I take too much at once I get a screaming headache.

 

[Freddd]

@Freddd What do you mean by too dry? It's really cold and dry here right now, but my skin seems excessively dry. I'm definitely getting those marks on my skin from socks that someone else mentioned. Also my knee is all kinds of swollen messed up. I just increased my folate by anther 800mcg. I take my folate 4 times a day and I'm dividing that extra pill between the 4 doses. If I take too much at once I get a screaming headache.

Hi Phred,

I got very thick saliva, such that the dentist mentioned it and I got 7 cavities all at once after having 1 in the past 15 years or so. The dentist suggested a type of autoimmune response and my internist tested for it but had said the pattern of symptoms wasn't right. The test was negative. I went reading deeper and found out that the diuretic could do that with multiple cavities being a tip off. It was also mentioned that while it caused potassium and magnesium to be dumped, it accumulated sodium and through everything off. It did. I started tapering the diuretic and sure enough my saliva liquefied more. My voice came back from all raspy which had happened. I couldn't get a clear voice for nearly a year. This 6 months, 2 very small cavities, a big improvement. I bet they were already started last time. The dentist can see that my saliva was back to normal. I always have the marks from socks. I have a permanent dent in my legs, which can be felt even when the skin is smooth over it, from where my ski boot tops were. It has smoothed out some in the last 25 years since I last skied.

 

[skwag]

@Freddd

The day I introduced myself here, I hadn't had any folate insufficiency symptoms for a couple weeks. Well, I must have jinxed it. The following day or two I think I got just a touch of a cold. Anyway, the angular cheilitis showed up. I upped the Metafolin, and today the angular cheilitis is largely gone. You know what else is gone? The indentation around my ankles from socks. As best I can tell they went away simultaneously. I guess I'll be checking my ankles for a while, looking to see if edema is a leading indicator of folate insufficiency. Interesting observation, Freddd.

 

[cph13]

@Phred,I'm currently taking 50,000 iu of D under the direction of my dr. Nothing, Nada, Eppis...but thanks for the suggestion.
@User U R saying U take 4-5 folate that is x 800mcg RIGHT!
HOW MUCH FOLATE IS EVERYONE ELSE TAKIN' vs mb12 and ab12 PLEASE. TU all very much. xoC[/quote]

 

[cph13]

@skwag I sure wish I had my ankles back...how much folate R U taking vs mb12 and ab12. I sure think I'm running over the edge of the 12's vs. folate. Thank U in advance xoC

 

[skwag]

@cph13

If everything is good I take

5 x 800 mcg = 4mg Metafolin daily
4 x 1mg = 4mg Mb12 ( Enzymatic Therapy ) daily
1/2 x 10mg = 5mg Source Naturals Dibencozide every few days

If I have any folate insufficiency symptoms I'll up the Metafolin to 7x800mcg daily, maybe more.
I've played with the B12's but I don't notice any improvements if I increase them ( I've tried ridiculous amounts ). I might even be able to lower them, but I haven't tried yet. I have tried to lower the metafolin and i definitely run into trouble if I drop to 3 or 4 pills ( x800 mcg) daily. When I do run into folate insufficiency symptoms upping the dosage of Metafolin seems to eliminate symptoms more quickly.

I hope you get your ankles back too! The swelling on my ankles is not really bad. If it were not for the socks I wouldn't notice it. I'd estimate the dent I saw yesterday was the depth of a quarter ( 25 cents ). Hope this helps.

 

[cph13]

@skwag thanks ever so much. I also take 5 x 1mg MB12 ET daily
4 X 5 mcg Metafolin
20 mg total a week over 3 day than -0- 4 days of Ab12- S. Natural (trying to finish the bottle off)

Dibencozide (anabol Dibencoplex didn't do much either. Much smaller doses like 1/4 of a pill)
I'm wondering if I should switch to hydroxyb-12....???? @Freddd-no yelling at me now. ;-P

Perhaps, I'm just not cut out for this protocol. I've lost all strides. I tend to think the k-ankles are from it. I dunno anymore. Now that I got a shipment I'm going to bang mb-12 maybe pop 3,000mcg x 3 times a day and see what happens. my k-ankles (esp. both outside ankles) looked like they gained 5 lbs each till I go to bed. I wake up lookin' acceptable than pouf I'm swellin'. Thanks for your response. Nite Nite to all xo C

 

[skwag]

@cph13

I reread your first post on this thread and it brought back a memory. I do not react well to large amounts of Adb12. I think I may have been trying 10 mg a day. It really affected my mood. Lack of patience, mental restlessness, and just a general uneasiness. Wish I could describe it better. Anyway, I had to slow down with the AdB12. On the other hand, with the MB12, after the first month, I could take 30mg daily without any more of an effect.

 

[cph13]

@skwag excellant head-up. Thank you. I will take heed and adjust accordingly. Hugs C

 

[PeterPositive]

@cph13

If everything is good I take

5 x 800 mcg = 4mg Metafolin daily
4 x 1mg = 4mg Mb12 ( Enzymatic Therapy ) daily
1/2 x 10mg = 5mg Source Naturals Dibencozide every few days

How long have you been taking ~ 4g of Metafolin? Were you able to start with a high dose?
At the moment I am taking 800mcg and trying to slowly build it up to a higher dose, since I am MHTFR C677T +/+

Is it safe to take a high dose such as 5-7mg/day for long periods of time?

Thanks

 

[skwag]

How long have you been taking ~ 4g of Metafolin? Were you able to start with a high dose?
At the moment I am taking 800mcg and trying to slowly build it up to a higher dose, since I am MHTFR C677T +/+

Is it safe to take a high dose such as 5-7mg/day for long periods of time?

Thanks

I started with 800 mcg and quickly developed symptoms of paradoxical folate deficiency. Within a couple weeks I was taking around 4 mg of Metafolin a day. I've been taking around that much for well over a year, and during that time I've felt healthier than I have in the past 20 years.

Is it safe? Deplin is the prescription form of metafolin which is prescribed in doses of 15mg or 30mg a day. So there have been studies done, and I'm not aware of any dangers taking those high doses. That said, I don't think we have any long term studies. For me, I think it is more unsafe not to take it. My nerves were deteriorating. Numbness was becoming more frequent and more severe. I used to catch every cold that came around and it would put me in bed with respiratory infections for a week 3 or 4 times a year. I got sick once last year, and I wasn't bed bound. So I think my immune system is more or less like that of most people now. We all have to make our own decisions about what we do with our bodies and what we put in them. For me, taking higher doses of Metafolin is a pretty easy one.

 

[PeterPositive]

@skwag: thanks, this is very illuminating.
I am currently having difficulties finding doctors that are up to date with the methylation issues in general and I find that I can learn quite a bit from the experiences of other people.

Do you also have the MTHFR mutation or did you do other types of lab tests before starting methylfolate?

Thanks

 

[skwag]

I've never had any testing done. I'll spare you my rant about doctors. Good luck.