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Lessons from ME/CFS: Finding Meaning in the Suffering
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Folinic Acid problems and more

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by kelly138, Dec 7, 2013.

  1. kelly138

    kelly138

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    MTHFS ++

    can't tolerate folinic acid or at least couldn't a trial this fall - felt toxic - more brain fog on it - stopped it and 3 days later started to clear -

    the ND I was seeing told me to take more stuff with folinic acid in it a few weeks ago - obviously I didn't - they don't get the damage they are trying to cause

    I can use some help with all the detox that is going on - it gets overwhelming in the evenings and I obviously can't turn to the ND I was seeing.
  2. helen1

    helen1 Senior Member

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    What are you taking and how much?
  3. kelly138

    kelly138

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    no folates (no MFolate either) - 2000 HB12 as one perque - 200 mg SAMe, some magnesium and few other things - - I am taking TMG - I just dropped a lot of supplements a few days ago too and feel better but not sure it will last - I shake inside lots some days

    I just don't have an exact list right now of what I am taking but do plan to generate one just haven't updated it since I dropped things
  4. Sea

    Sea Senior Member

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  5. kelly138

    kelly138

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    I am aware of that thread - decided to post here over that thread when I posted - I can post there too but the last post there was over a year ago. That is why I started this thread with the fact that I am MTHFS ++
  6. helen1

    helen1 Senior Member

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    So you're taking hydB12, SAMe and TMG. It looks like you're trying to get methylation going. Is that right?

    If so, you'll most likely need to add the other elements as per Rich and/or freddd to get methylation going, plus probably more co-factors such as B vitamins and coq10, since your detox symptoms may be caused by methylation startup even from your minimal methyl donor list.

    This would require all cofactors to be in place to support this increase in metabolic processes including detoxing.
  7. kelly138

    kelly138

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    I think methylation is happening at this stage. I really don't know but I can see big differences in mental clarity over time which then went down the drain when I had trialed folinic acid.

    I can not tolerate B6 (either as B6 or as P5P). I can tolerate COQ10 and will continue it as well as PS / sunflower lecithin and royal jelly. Just I don't have an up to date list of what I am taking.
  8. kelly138

    kelly138

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    I can see as I did things to enhance glutathione that I set off big increases in nasty tastes and smells and liver flares - I am not sure I can tolerate an excess amount of sulfur but seem to have reached a balance on that at this stage just avoiding eating a lot of cabbages and onions. The SAMe is one thing that set off this increase in detox and I am only taking 200 mg right now because more sets off more symptoms.

    Part of my problems is that I am feeling the impact of thinking I had someone in real life to help me and finding out that isn't true at all.
  9. caledonia

    caledonia

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    Even if you have a naturopath/doctor helping you, you are still the only one who knows how you feel and react to things. You're in charge, not them.

    I always took things way slower than my naturopath wanted me to, and even though they weren't always happy with it, it was a good thing I did that. We are so sensitive, it's easy to make yourself worse.

    I suggest reading the Start Low and Go Slow document in my signature links.
  10. kelly138

    kelly138

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    I do start low and go slow anyhow.

    I am aware than only I can really determine if something is really right for me.

    What irks me is the attitude I got from this person who had seemed to be willing to help and now isn't. They weren't willing to even consider anything besides ancient Yasko stuff. I know I am better off without them but still....

    And I can't believe that after I had told them I was folinic acid intolerant they still were trying to tell me to take it - they wanted me to fit their mold and were not willing to treat me as a unique person.

    What happened to the idea that we are all individuals with individual needs that need to be addressed and we are not put into pigeon holes and treated like others in those pigeon holes like the alleged mental health professionals treat us.
  11. Freddd

    Freddd Senior Member

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    Hi Kelly,

    It could be that you are like me and get paradoxical folate deficiency from folinic acid and folic acid. Folinic acid appears to be able to block 10-20x as much methylfolate in some people. HyCbl can also increase that as it competes for methyl groups, not much but then you may not have much.
  12. kelly138

    kelly138

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    HB12 can help or hurt? I am confused.
  13. Freddd

    Freddd Senior Member

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    Hi Kelly,

    HB12 can help or hurt? I am confused

    You and the whole world. In 1948 they discovered B12 and misidentified it as CyCbl because of a lab mistake. In 1959 the real AdoCbl and MeCbl were positively identified as the real b12s actually used in the human body. Almost all the research continued on CyCbl. In 1971 a famous letter was written to the Lancet (British Journal) telling some dangers of CyCbl and that the UK would be better off switching to HyCbl. About the same time France and Japan start having a tiny amount of research on MeCbl. In 1998 MeCbl became available commercially and AdoCbl shortly thereafter. Then Metafolin came along.

    So if you want to know how much of other vitamins to take, the answers is based on CyCbl, HyCbl and folic acid. What do tests mean? Well, when the norming population is fed foods with folic acid and CyCbl and vitamins containing the same, whatever conditions that are created by those inactive vitamers have become normal.

    The problem with CyCbl and HyCbl is that if one collects all the b12 deficiency symptoms from different countries that use different "official b12", and all the symptoms MeCbl and AdoCbl obviously heal one comes up with a list 300 or 400 symptoms long with all the physical symptoms and a whole lot of neurological symptoms that are almost entirely missing from the CyCbl/HyCbl symptoms list. Further even on the things like enlarged red cells (High MCV) don't respond well to CyCbl/HyCbl. HyCbl has a very limited range of action compared to MeCbl/AdoCbl. It helps perhaps 10% of the symptoms several percent as well. People with pernicious anemia are the living dead. The HyCbl keep them from dying but it sure doesn't restore them to health. One HyCbl injection each 3 months or 1 CyCbl injection each month is about the worst possible B12 therapy that works at all. It is based on keeping the serum cobalamin level no lower than 300pg/ml.

    The majority of people in the USA have as much CyCbl and folic acid in their food supply as their bodies can use. These people are sicker than ever. They are the explosion of neurological disease including FMS/CFS/ME that we see going on right now. If these things even prevented these diseases we wouldn't be seeing them. They certainly don't cure them.

    The danger of HyCbl is that while some symptoms of b12 deficiency will improve, others will worsen. The system most afflicted is the CNS. So "... if I only had a (working) brain" becomes our working theme song. The longer HyCbl is taken the larger the reaction when taking MeCbl. HyCbl never does build up active b12s to the point of generalized healing and instead worsen most of the symptoms over time while improving a few.
  14. yukito

    yukito

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    You don't tolerate folinic acid,but what about methylfolate?
    As I don't have access to all these tests,I let melt some folinic acid or methylfolate ON THE TONGUE,not under.
    BOTH HAVE SIMILAR EFFECT ON ME,at least in little amounts (200µg) .Don't know with bigger amounts and in the long run.As I am back to studies I can't allow myself to perform long trials and to crash,despite it would be instructive.
    What I have concluded is that I can ingest some foods containig folinic acid ,whitout fear of that blocking methylfolate.
    Despite I have no paradoxical folate deficiency,folates are sometimes harmful.But if I avoid too long foods containing folate it can also become harmful.
    You could perform the same test,it's quick, free and reliable, at least for me who does that since a few months with all the vitamins, minerals and foods.
    Good luck.

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