• 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.

Edema and Digestive Difficulty

Hi there,
I recently got in the donut hole with insufficient folate. I have doubled my folate, and I have new symptoms (doubling folate did stop some pain I was having). Edema seems worse, and digestion seems stalled. Does this mean I need to continue with more folate? My body feels a little overwhelmed...maybe due to increased healing or just trying to adapt?
Currently I am taking all vitamins in FP
I take 3-4000 methylB12 enzymedica
I am now taking 800 mcg of Solgar methylfolate 3 times a day
Also, what does one take for edema?


Moderator Resource
Southern California
@Nikki7 - helen1 is right - see http://www.progressivehealth.com/potassium-fluid-retention.htm

When I started following freddd's protocol, my potassium levels tanked after about 3 or 4 days, quite badly. Fortunately I had read several things Freddd wrote about potassium so was able to figure out what was going on, and I urge you to do the same.

One important thing is to titrate up gradually - don't take a whole lot all at once, that can be harmful. I took about 200 mg. maybe 3 times a day at first and worked up to 1000 mg. a day, and continue to take this some 5-1/2 years later, as well as drinking low-sodium V8 which is high in potassium. If I had not known about the low potassium issue, I would have had to stop taking methylfolate.

Also when you say your body "feels a little overwhelmed", again, that could be low potassium. My chief symptom with low potassium was severe fatigue (different than PEM).
@Mary and @helen1
You guys were right...my potassium got very low I think. I've taken pills and downed coconut water. My body was in folate deficiency, so I upped it as you do to get out of donut hole deficiency---I upped it by half. Today has been rough! I think I'm okay now, but may rest for a day or so! It's a struggle to get out of the deficiency when this hits! Thank you both!
I've recently had to up my folate due to being in donut hole deficiency...I was having excruciating nerve pain. Adding 50% extra folate made me feel much better (took away nerve pain) but threw me into crazy bad potassium deficiency. I feel caught in the middle. When I took a short break today from supplements at lunch due to my low potassium, my tongue got swollen (felt like lack of b12 kind of swollen response). I think my condition is pretty severe...spine pain and have lost a lot of feeling...your protocol is helping with some feeling returning. I wonder if I'm taking enough supps to heal or going in a circle since I keep having to cut back on what I feel I really need. Any advice? I'm concerned that with spinal pain/loss of feeling I should be at a higher dose. Anything else I can do? Thanks so much!
3-4000mcg mb12 Spread out
4-600mcg mfolate 3x a day
All vitamins per your protocol


Senior Member
Salt Lake City
It usually took me a day to level out the potassium deficiencies with most of the correction done the first day and maybe adding what is need the next day . Mine is up to 2600mg so far and varies slightly from day to day. If it is low the next day I increase by 300mg until I can hold steady. Sometimes I can go several weeks without gut paralysis which is usually my first indicator of low potassium, spasms come later that day if I don't take an extra 300mg. I am on a prescription (Reglan, works great) for restarting my gut if needed. It has a black box warning and I dislike using it too often. I use less than a months worth a year, as little as possible. If used steadily it can cause permanent side effects, tardive dyskinesia.

I found that at 7.5mg or so that symptoms started disappearing and at 15 only 2 or 3 intermittent folate deficiency symptoms came up and at 30mg/day they are all gone and stay gone. Also at the higher folate doses my kidney problems are going away, no edema, mainly dealing with the liver damage from the antibiotic (Augmentin) which utterly clobbered me. One thing to remember, about mfolate doses; the Deplin to Quatrefolic (6S isomer) is 1:1.5 meaning 20mg of Deplin equals 30mg of 6S. They also have different absorbtion and body distribution from each other. I just recently started a trial with the 6S from MethylPro and will do a review soon. It is different is certain ways but I honestly can't say if that is better or only different. Also the dose taken at one time may effect tissue penetration with higher doses at one time having a different profile form more smaller doses.

I am presently doing high dose MeCbl (3x10mg injected) because I have trouble getting it into my brain, 45mg of 6S in 3x15mg doses (equivalent to 3x10mg of Deplin) dose wise and 2600mg of potassium. I have no folate deficiency symptoms variations from day to day. I'm on the edge of enough potassium. Don't forget B1, B2 and B3 can increase both needed doses of potassium and mfolate and increase symptoms instead of decreasing them.

I found that increasing the methylfolate by 50% a day was effective for a fast titration to zero folate symptoms. Then if they come back again another such dose. However, if each single dose wasn't reducing the symptoms within a couple of hours, each dose needed increasing by 50% until each dose has an effect. Then one can work on merging the effect into a continual lessening until all folate symptoms are gone and stay gone. Progress was fast after 7.5mg daily dose. Increasing the folate can cause an increase in potassium too but it is not linear. Each doubling of folate might cause only a few hundred mgs of additional potassium.

In reading up across the internet, those taking it to 30mg are having outstanding results. And I don't know if it is that some of us just have bad absorption or, like me low cellular folate for genetic reasons.
Last edited by a moderator: