1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

adverse reaction to tiny amts of folapro

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by softanimal, Apr 2, 2012.

  1. softanimal

    softanimal

    Messages:
    7
    Likes:
    0
    hi everyone,

    (i posted this on prohealth too but thought i'd try here as well, since my registration was just approved.)

    i'm new to the board but have been silently reading for awhile. i have chronic lyme and coinfections, as well as a diagnosis of CFS. anyway, let me cut right to my question: i don't have insurance or any disposable income so haven't been able to afford genetic or MTHFR testing. however, my ND put me on one folapro/day (800 mcg) regardless, because i muscle tested well for it. i'm also taking sublingual hydroxyb12 and phosphatidyl serine, along with lots of other supportive herbs and supplements and a few antimicrobials targeted at the chronic infections. anyhow, i started with 1/2 tablet for a few days, began feeling strange so stopped taking the folapro for about a week, started again with 1/3 tablet, then a couple days after that was slammed with intense brain fog, run-over-by-a-truck fatigue, sleepiness, a complete and utter feeling of sickness - i was pretty much unable to move or think. needless to say i stopped the folapro again, didn't take it for a couple weeks. two days ago i restarted at a tiny crumb - i ground up the pill in a mortar and pestle and plucked a crumb from the white mess - and again, after two days i am down for the count with all the same symptoms as before. this time they're slightly less intense, but only slightly, and still debilitating.

    so, my symptoms from even a tiny crumb of folapro include excessive sleepiness, brain fogginess, feeling totally out of it, headache, and just kind-of feeling sick all over, like my body is working something out in an intense way. it's mostly a terrible feeling, but some small seed of it feels productive/healing. however, it isn't compatible with living/working/taking care of myself/being coherent/etc; i live alone and am solely responsible for my care and the care of my two cats, and i need to be able to work part-time.

    this illness nearly killed me in 2005 - i was bedridden and slowly dying for a year - and since then i've been up and down, but never, knock wood, as sick as i was when it first hit so intensely. and i refuse to go back there. i'm definitely still ill, but am somewhat functional, more functional than many folks who've been able to tolerate much, much higher doses of folapro with little to no additional problems. this has me confused. does anyone have any insight as to why a tiny crumb of folapro affects me in such a profound and incapacitating way?

    also, i've been reading that i should avoid folic acid while taking methylfolate. my multi has a small amount of folic acid in it - i take alive multivitamin - does anyone know of a good multi that doesn't contain folic acid?

    sorry for the jumbled post, and thank you in advance for any thoughts!
  2. softanimal

    softanimal

    Messages:
    7
    Likes:
    0
    up for any ideas :)
  3. merylg

    merylg Senior Member

    Messages:
    764
    Likes:
    492
    Sydney, NSW, Australia
    Hi softanimal,
    Just wanted to say I have had a similar experience, in that Methylation protocols did take me from being bedbound to being housebound.
    BUT no matter what doses I tried of Methylfolate (Metafolin) I also felt really ill every morning.
    Same with Methyl B12.
    I had my potassium tested a couple of times, so I don't think it was due to low potassium.

    So either I am allergic, or intolerant and/or my body takes these Methyls and turns them into something toxic.

    Anyway, I have since learned that if one's B2 (Riboflavin) stores are depleted, then doing a Methylation Protocol can be problematic.
    So I am now slowly working on replenishing my stores of B2 (Riboflavin). There are a few threads going on this: B2 I love you...B2 and me...Hair Mineral Analysis.
  4. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    Did you have any testing done at all? The thing is, without proper testing, there is really no way to know what your requirements are.

    The two main explanations I have seen thrown around are: induced hypokalemia (low potassium) and further depletion of glutathione. Either one of these two has the potential to cause malaise. In both cases, this means that methylfolate is working. Some people also talk about starting to detox but I am personally skeptical of that claim.

    Are you taking antibiotics for Lyme? If you don't address this infection, I am afraid the supplements alone aren't going to be able to make you feel much better.

    Instead of taking a large single dose of methylfolate and/or hydroxocobalamin, it would probably be better to start really slow with doses distributed throughout the day. A multivitamin that I like and take that has all the "right stuff" is Thorne Basic Nutrients III. The recommended daily dosage is 6 capsules. However, you can simply start with 1 capsule/day and slowly increase as your body allows. In addition, you probably want to spread the capsules throughout the day to give your body time to slowly process the nutrients.

    If you don't mind my asking, do you live in the US?
  5. xrunner

    xrunner Senior Member

    Messages:
    541
    Likes:
    203
    A couple of ideas.

    1. If you muscle tested ok for Folapro it doesn't mean it can't affect you on some level whatever the dosage. That's why I did not find kinesiology per se very helpful for this kind of issues.
    For eg. Metronidazole ( I use it for Lyme) is an antibiotic for which I usually test OK. However, today when tested in relation to certain organs, i.e. lungs, wasn't ok.
    Also, I usually test ok for Samento (for Lyme again) and I checked it last week because it was making me feel a bit spaced out. In fact it was ok on its own but wasn't ok in relation to Body-Brain balance.

    2. Sometimes, one supplement is fine on its own but when combined with others it can cause a reaction. Again muscle testing for all of the stuff you take may help uncover if there's any cross-reaction issues.

    Look into Naet and give it a try if you can as it can help you with all of these issues. Once it uncover an imbalance with a supplement it can treat that so that you're able to take that supplement.
    Personally, I don;t take anything unless I test 100% solid on a physical, emotional and physiological level which are the three Naet levels. I know it may sound nuts, which is what I thought at the beginning, but it does really work for me.

    AS for the multi, Thorne has some multi formula with active folate at different dosages.

    All the best.
  6. anniekim

    anniekim Senior Member

    Messages:
    586
    Likes:
    186
    U.K
    Meryl, do you mind me asking if the methylation protocol made you feel ill, how did it take you from bedbound to housebound?

    Many thanks
  7. softanimal

    softanimal

    Messages:
    7
    Likes:
    0
    thanks for your thoughts so far, everyone.

    nanonug, i've been treating lyme and coinfections in various ways (mostly naturally because i don't tolerate abx well - i tend to get a c diff infection - but i also treated with pharma abx for about a year) on and off for several years. yes, i live in the US.

    merylg, thanks for the info about b2!

    xrunner, the muscle testing my practitioners do takes all that into consideration - it is a comprehensive form of muscle testing called ART. i've found it mostly, and sometimes scarily, accurate. however, just because i test well for something doesn't mean i won't have some sort of awful detox reaction. so i need to find a way around it/find a dose that is tolerable. one of my practitioners suggested dissolving a tiny amt of folapro into a vodka/distilled water concoction, and starting with one drop of that. i might try that and see how it goes.
  8. softanimal

    softanimal

    Messages:
    7
    Likes:
    0
    i've also read that i need to address possible CBS mutations (with RNA drops, yucca, molybdenum, etc) before i can address MTHFR mutations. not sure if that's true, but maybe it's why i can't tolerate any supplemental methylfolate?
  9. merylg

    merylg Senior Member

    Messages:
    764
    Likes:
    492
    Sydney, NSW, Australia
    Hi anniekim,

    I first did the Simplified Methylation Protocol for about 3 months, then changed to doing Freddd's methylation protocol, which involves higher doses of Methylfolate & the addition of Methyl B12.

    I only felt really ill when I woke in the mornings, so I pushed on regardless...firstly thinking it was some kind of "detox" that was "to be expected" & "part of the treatment". Secondly, I came to think it was "low potassium" & experimented with taking potassium supplements, which did not help.

    Then I went through a process of elimination to work out which supplements in the protocol were making me feel ill. I have lots of allergies & intolerances which give me angioedema of my airways ( & sometimes gastric angioedema), so reactions to things are not unusual...(the morning feeling was nausea/malaise, dehydration, metallic taste)

    I eventually worked out that I reacted to Methyl B12 and/or Methylfolate (Metafolin) even at low doses. I seemed to tolerate Hydroxy B12 sub-lingual and Adenosyl B12 (Dibencozide).

    It took months & months to work this out. It's no longer a methylation protocol if you can't take the Methylfolate (Metafolin)!!! So that's when I gave up!

    I still credit the protocols with giving me some level of improvement, but I now think that Methyl B12 & Methylfolate are not for me, that multivitamins (as in the SMP) are not a good thing, that multi Bs (B complexes) are not a good way to get B vitamins, that I took way too much Fish Oil...that taking Zinc as a supplement was bad for me...

    and that correcting a B2 (Riboflavin) deficiency first, is far more important to me...
    CoQ10 is fine, a little B12 in a form I can tolerate, a little Magnesium & some Manganese.
  10. xrunner

    xrunner Senior Member

    Messages:
    541
    Likes:
    203
    I'm sure it is comprehensive. I worked with a practitioner who did something similar and she was great. However, in my case being so impatient, having to wait and build up supplement doses slowly etc. used to drive me crazy. If I need to take something say DMSA, an antibiotic, etc. then I need to be able to do it within a couple of days max. So I needed a tool that could get rid of any reaction quickly.
  11. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    If you ever decide to go back on the antibitoics (which I think would probably be a good idea), you need to protect yourself with saccharomyces boulardii to prevent infections with C. diff. I don't think you'll be able to get rid of Lyme any other way.

    I hope you are taking advantage of every single social net there is out there, then, such as medicaid and/or social security disability.
  12. softanimal

    softanimal

    Messages:
    7
    Likes:
    0
    nanonug, trust me, i know almost everything there is to know about treating the infections themselves. i've been at this a long time. i take large doses of sac b and still get c diff. there are indeed other ways (as i said, i went from dying -not a hyperbole - to living on my own and partially functional, all without pharma abx). i'm in the process of applying for ssdi. also, i'll look into naet - thanks. :)
  13. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    Would you mind sharing what you did? Thanks!
  14. softanimal

    softanimal

    Messages:
    7
    Likes:
    0
    gosh, too many things to name. mostly based on dr klinghardt's work/protocols. also, energy work - long distance and in person - was a huge factor in my healing, maybe the most important.
  15. treefrog

    treefrog

    Messages:
    52
    Likes:
    10
    NJ, USA
    That's interesting about the energy work... I have audio files of the Gateway Experience by the Monroe Institute. I did one the other day & it was really helpful to get into that state of relaxation. I did the full series but it was a while ago. I just tried one again & it was helpful. I sort of forgot about working on things from that point of view.

    When you have been ill a long time, I think the body forgets how to feel well. I know it's kind of "woo-woo" but the Gateway CDs teach you how to astral travel. Sometimes, you really need a vacation from your own body...


    Don't mean to digress...

See more popular forum discussions.

Share This Page