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If you have paradoxical folate deficiency please post here

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, May 16, 2011.

  1. Freddd

    Freddd Senior Member

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    I'm trying to get an idea of how widespread the paradoxical folate deficiency is. If you could post the details of what symptoms changed when you went off of folic or folinic acid and on to Metafolin, whether it was folic or folinic acid or both, how long it took, and whatever else you noticed I would appreciate it. Thankyou.
     
  2. ukxmrv

    ukxmrv Senior Member

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    My experience was that I was tested for folate deficiency through a local NHS hospital. My levels were low and I was prescribed folic acid (as a prescription). My weakness, pins/needles/loss of sensation on limbs improved a little but I was left with my main ME symptoms (sore throats, viral, PEM etc).

    Blood test showed that my blood folate levels improved.

    I'll add to this post as I find the other types of folic acid I tried

    XMRV+, MTHFR mutation
     
  3. Lala

    Lala Senior Member

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    I stopped B complex with folic acid and started Metafolin today. So I will post, what happens. However I am afraid I will build deficiency in other B vitamins and somehow can not find any B complex without folic/folinic acid.
     
  4. drex13

    drex13 Senior Member

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    Have you checked out Douglas Labs B-complex... has Metafolin, no folic or folinic acid.
     
  5. L'engle

    L'engle moderate ME

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    I don't know if I have the deficiency, but I imagine it is quite likely. Blood work a year ago placed my folate levels as fine, as well as b-12 levels. I never improved on B vitamins that had folic acid in them. I'm now improving on methyl b12 and metafolin so I think there is a deficiency that was masked by the blood work numbers.
     
  6. Shellbell

    Shellbell Senior Member

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    I stop using anything with folic acid a week and a half ago. Since then, my condition has worsen. However, at the same time, I have had other things going on with my health that would interfere in my immune systems function. So this could be why.

    I ordered both the Douglas Labs and Pure Encapsulations B Complex with folate. I am taking the PE. I like the purity of their products. I will let you know how it goes.
     
  7. Lala

    Lala Senior Member

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    Yes, but I did not find anybody who sends it to Europe...
     
  8. PokerPlayer

    PokerPlayer Guest

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    My dr. had me on 4000mcg folic acid and I turned into a zombie with bad brain fog and horrible attention span. I went off the folic acid a couple months ago and replaced it with 200mcg methylfolate and the brain fog has come down 75% or so!
     
  9. Mary

    Mary Senior Member

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    I had been doing Richvank's simplified methylation protocol for roughly 3-1/2 years off and on. It always made me feel sick (tired, screwed up my digestion, spacey, etc.) but I figured those were detox symptoms so kept at it, though I had to keep stopping because it was so unpleasant.

    And then 6 weeks ago or so I stumbled across Freddd's theory about paradoxical folate deficiency and how the those "detox" symptoms quite likely were actually induced folate deficiency. So I immediately stopped all Rich's supps., and started taking methylfolate and dibencozide and carnitine fumarate and methyl B12 (I'd already been doing methyl B12 shots) but added in lozenges. And within a couple of days my energy started to pick up. I can't remember exactly how long it took but it was quick, I was very surprised. I also stopped NAC and l-glutathione which I had been taking as well. I felt pretty well for several days and then I crashed, so I still am dealing with having to ration my energy rather carefully, even though I feel better and have more energy before crashing. I'm going to try systemic enzymes to see if they can help prevent crashing (post-exertional "malaise" [delayed onset exhaustion]).

    I have had some hiccups on this new protocol, chiefly relating to potassium, which I'm still sorting out. I'm going to do a separate post on this.

    Mary
     
  10. Freddd

    Freddd Senior Member

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    HI Mary,

    Your digestion should straighten out in a few more days typically. Also, the fatigue can be low potassium. The other thing I must caution you about is that even though you may feel tremendously better you have no more actual physical capacity. That is built up the old fashioned way, exercise, but start low and build up very slowly. I did it by walking to start with and went one driveway further, 50-75 feet each way, daily. When I started working my arms, shoulders and so on I started with no weights with 3 reps, built up by 1 rep a day to 50 reps, added 1 pound and dropped back to 3 reps and repeated the cycle. The physical rehab took several years. Now I can do physical work 6 hours a day, hike 2 thousand vertical feet each direction with several miles of distance and so on in a day and still be good for an active evening.
     
  11. Mary

    Mary Senior Member

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    Hi Freddd - First, it's really encouraging to hear about your rehab and what you are physically capable of doing now. That is really amazing and I am really glad for you! I remember what I used to be able to do and hope hope hope I can get back to it, and I don't care if it takes a couple of years to get there.

    My digestion is okay now, the detox or folate deficiency symptoms would always abate rather quickly once I stopped Rich's supplements, although my energy would still not be good. You're right about the potassium -it is helping my energy - I've had to be figuratively hit over the head a couple of times before I finally realized I need to be taking it every day, which I am starting to do as of yesterday. Again, I'm so grateful you blazed this path! I never would have figured it out.

    About exercise - it's a little complicated - I think it's more than building up my muscles and my endurance. I generally can do 3-1/2 hours of moderate activity on a good day, and then have to be inactive the rest of the day in order not to crash. So on a good day, I can take a shower, wash my hair and dry it, and then maybe do the dishes (because I generally don't have the energy in the evening to do them, or may be risking a crash if I do them). Then I have my choice of activities: laundry, grocery shopping - each of those activities would use up the rest of my alloted activity time. Or if I'm really lucky, I can get to the library. So many of my days in the past have been spent either crashed, or sick (almost constantly sick) or detoxing (folate deficiency) where I basically couldn't do anything (no shower, no dishes, etc.) that on a "good" day, I'd have to do the essentials: shower, wash my hair, cat litter box, take out trash, grocery shop (which takes the most energy and uses a whole day's worth) laundry, etc. (of course not all of this on one day, I'd parcel out my activities very carefully)

    So to do some exercise reps or walk down the driveway (on top of my other essential things I have to do) doesn't really work for me. If I didn't have to do anything else, no cleaning or shopping or cat litter box or anything, then I could monitor my steps and count them and see if I can do a little more each day, but as it is, I don't count my steps but I have a pretty good idea of my limits. If I keep feeling good on this protocol, I will try to push my limits a little bit (e.g., do the dishes in the evening), although it takes so little to send me over the edge into a crash. It's crazy.

    Re getting sick: For many years now I have been sick (some sinus/respiratory problem) alsmot constantly. Every time I crashed (3 or 4 times a month) I would get sick, and also often be sick in between crashes. Just recently I have stopped getting sick so much. I think it is primarily due to a colostrum/lactoferrin product by Symbiotic I'm taking. Also the new protocol may be helping. What I'm trying to say is I may have more good days in the future and thus won't be desperate to have enough good hours to get my basic essentials done, so that on a good day I may be able to try some very light exercise, since I won't have to use it for daily living requirements. Or maybe I could even do a little gardening, which I have not had the energy for. My life for the past 13 years has basically been like having a very small bank account and having to spend it first on food and shelter, and generally nothing is left over for anything else.

    Anyways, thanks again so much for your time and knowledge -

    Mary
     
  12. tahoma

    tahoma

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    Freddd:

    What do you recommend to increase potassium? If a supplement, can you recommend one?

    Thx. T
     
  13. Freddd

    Freddd Senior Member

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    Hi Tahoma,

    Somebody mentioned that there is a powdered potassium chloride supplement meant to be mixed into liquid at IHERB. If you search there they probably have 20 potassium supplements. Then there are others like potassium glutamate (NOW) which I take and there is potassium chelate which a friend of mine takes. That one is a capsule so the powder mixes fast when it dissolves. I don't know really. If one kind bothers your stomach or doesn't work try a different brand/variety. Supplements can start working in 15-20 minutes. Food takes hours and doesn't seem to work in the same way especially at relieving quick onset symptoms.
     
  14. Michael

    Michael

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    Hello all,
    I just found and joined the site TODAY, and WOW, there is a big learning curve, and it is of course challenging with my sometimes foggy thinking. I am studying to understand what supplements to purchase from iherb--that will likely give me noticeable relief/benefits. I have FM and CFS, with main symptoms of 24/7pain, constant stiffness, variable moods,unstable body temperature, and sleep irregularities.
     
    ggingues likes this.
  15. kelly138

    kelly138

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    think this is what I am dealing with - need tons more information on this if anyone can help

    what foods are SAFE??
     
  16. helen1

    helen1 Senior Member

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    freddd: "I'm trying to get an idea of how widespread the paradoxical folate deficiency is. If you could post the details of what symptoms changed when you went off of folic or folinic acid and on to Metafolin, whether it was folic or folinic acid or both, how long it took, and whatever else you noticed I would appreciate it. Thank you."

    Hi @Freddd,
    I've been doing your quartet properly for about a month now. I say properly because before that I wasn't taking the carnitine at the right time. But then due to a post of yours I starting taking it 30 mins before breakfast and noticed improved energy the same day, which has continued for a month now, with a few ups and downs. I'm also taking various co-factors.

    My Methylation Test through HDI in Sept. showed low levels of folates of all the kinds tested, so have been taking more Metafolin since Sept. Then I increased it again a month ago after reading another post of yours, and having found months ago that supplementing potassium wasn't making any difference, I decided my symptoms were likely paradoxical folate deficiency.

    What I'm doing now with methylfolate is:
    400 mcg first thing in the morning
    300 mcg with AOR B complex with food
    800 mcg in divided doses during the rest of the day, as symptoms dictate.

    I haven't ingested any folic acid for at least 6 months. I do still eat folate containing vegetables daily. I don't think they're a problem but am not completely sure. I eat organic liver once or twice a month.

    Most days I'm able to get out of the house around 12 pm and function normally:
    *grocery shop,
    *and/or work,
    *and/or exercise (several days a week can walk up to 1.5 hrs or do preCFS 3 sets of weights plus stretching if I don't work that afternoon)
    *until about 5-6 pm; then I'm tired; extra mfolate doesn't usually help much at that point.
    *very little PEM now; the 2-3x in the past month it has occurred have only lasted one day and were due to eating the wrong things at social occasions (a fantastic cheesecake with rum infused whipped cream for example that I still dream about sigh)

    In the past 10 days, have started coffee enemas, which have increased my energy, hours of functioning past 5-6 pm on a few days and feeling of well-being a notch more. That's another topic altogether though so I won't go on about it.

    Thanks for all your work and helping so many. I much appreciate it and any advice you may have.
     
    Last edited: Dec 26, 2013
  17. leela

    leela Slow But Hopeful

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    It's really good news to me to note that many manufacturers are now starting to specify on their ingredients list
    "unbrominated and unenriched flour".

    This goram enriching (brominating goes without saying) must be bothering a lot more people than we had thought.
     

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