International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Some questions - please help

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Wickie, Aug 19, 2015.

  1. Wickie

    Wickie

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    Hello,

    I am a middle-aged woman from Germany, suffering from CFS for many years now.

    I have read through this forum for quite a while, but there are still things I do not understand, due to my low cognitive abilities or because English is not my mothertongue, I don’t know. But it is hard to read this stuff in a foreign language with brainfog!

    So I would be very happy, if you could help me with some answers.

    Now the facts. I started the protocol some months ago with some basics (A,C,D, E and potassium). Then I started AB12 and MB12, 100µg absorbed each, three weeks ago.

    On Monday (three days before) I started with 4x100µg Methylfolate and had terrible lightheadedness some minutes after taking it for about 1,5hours. I read through the list of symptoms and found it in group 3, folate deficiency. So I increased the dose to 4x200µg the next day.
    At noon an overwhelming fatigue started which held on the whole day. This morning was ok, so I again took 4x200µg of folate. At noon the overwhelming fatigue came back again.
    I am asking myself, if there is something wrong.
    1. Should I reduce the dose? Or do I have to take something else in addition in order to get rid of the fatigue?
    2. How is Paradoxical Folate Deficiency defined? How can I differentiate it from insufficiency?
    3. What does donut hole mean?
    4. Looking at Freddd’s Symptom List, Version 2 – 01/09/2014, I would like to know, if these symptoms improve by the taking of the particular nutrient or do they accur/worsen?
    Thanks in advance for your help,
    Wickie
     
  2. ahmo

    ahmo Senior Member

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    Since your symptoms started after introducing folate, I'd try decreasing, not increasing it.

    The 2nd link in my signature is to a compilation of Fred's comments. Page 17 talks about paradoxical/ partial block:
    From page 10 of the Guide:
     
  3. Wickie

    Wickie

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    (I am the husband of Wickie and writing this on behalf as due to her severe condition she is not able to read and post in the forum at the moment)

    Dear ahmo,
    Thanks a lot for your answer and suggestion to reduce the amount of folate. Frankly speaking I/we can’t understand the logic behind. Wickie has increased the amount of folate as we thought the symptoms she got are fitting to the symtoms listed as “Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency”. As far as we understand the list, those symptoms appear when starting the protocol and taking not enough folate.

    1.Could you point out why you think she should reduce the amount of folate?
    We read a lot in the forum and studied your guide, however it might be due tour language capability that we don’t understand the issue!

    2.Do other starter of Freddd’s protocol have the same negative reaction and what do they do?

    In addition to that, we still have some difficulty in understanding the meaning of the latest symptoms-list and the meaning of the “donut hole”. Could someone help us and answer the question 3 and 4 of the first post?


    3.What does donut hole mean?
    (there is no similar expression in German….)

    4.Looking at Freddd’s Symptom List, Version 2 – 01/09/2014, I would like to know, if these symptoms improve by the taking of the particular nutrient or do they occur/worsen?
     
  4. ahmo

    ahmo Senior Member

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    4x100 is already a good sized dose. To then double it the next day is a lot. Fred's advice to me was to increase 100-200mcg (100µg) every day or 2.

    Yes, other people have problems. Some can only take crumbs as a dose. For me, increasing folate often, not always, led to histamine issues, speediness. I don't know how to evaluate your fatigue. All my knowledge is, quite frankly, of my personal experience.

    It's not always clear what the symptoms indicate:
    page 17 of my FP compilation:
    There's a whole thread here re donut hole. I'm pretty certain it's a term Fred made up.
    In my quick scan, that list is of things which responded to particular nutrients, which means improved.
     
  5. Wickie

    Wickie

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    Hi ahmo,

    Thanks a lot for the information and your thoughts.

    I am doing quite bad, bedridden most of the time. It is no longer only fatigue, I have the feeling as if I would have leakage current in my brain and I am starting to have panic symptoms. It is a hell of a ride and I have no idea what to do.

    One thing is clear now, it was much too much of folate and I don't know if I would ever take it again.

    I just took 50mg of Niacin in order to get away from this horrible symptoms.

    Do you have any other advise?

    Does anyone else have an advice how to stop the trip?

    Wickie
     
  6. ahmo

    ahmo Senior Member

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    Niacin is good. Panic could also be too much folate. Repeat the niacin if necessary. When I was increasing folate doses, and had these sort of symptoms, instead of niacin, I took 1mg MB12, which also stopped the symptoms. Hoping this trip stops soon.
     
  7. Wickie

    Wickie

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    Hi ahmo,

    I took one more dose of Niacin last night and I was happy that I could fall asleep then. Today I feel like a truck ran me over, flu-like-symptoms, headache, lightheadedness and ringing in the ears. I am very sensible to sounds and light and it is hard to be up.

    I reduced the dose of folate to 4x50µg after the third day and even that has been too much. I wanted to turn my situation to a better, but it seems to be that I damaged my body additionally. That is very frustrating!

    I am asking myself, if I am able to take methyl donors at all without having those bad trips. I am +/+ for COMT V158+H62 and MAO-A and maybe that makes a methylation therapy impossible for me.

    I don't know, if I will have the courage for another try with methylfolate.

    Thanks again for all your help.

    Wickie
     
  8. brenda

    brenda Senior Member

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    @Wickie

    I had a terrible time too when l tried to take methyl b 12 and folate in a b complex like many others here. I had to stop. It has helped me to correct other deficiencies first then start on a very small amount of the methyl b complex. and l mean one eighth of a capsule or smaller and build up very slowly. For correcting other deficiencies l used food sources like wheat and barley grass powder and cutting out all packaged foods rather than using supplements.

    Stopping folate allowed my body to return to how it was previous to taking it.
     
  9. ahmo

    ahmo Senior Member

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    Here's a reference to COMT that might be of help. In my signature is a link to blog about FMN form of B2. It made a dramatic difference for me, could address the MAO issues. Glad the niacin worked. Hopefully your body returns to something more normal quickly.
     
  10. mariovitali

    mariovitali Senior Member

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    @Wickie

    Have you had your self tested for Gene SNPs? (e.g from 23andme.com)
     
  11. Wickie

    Wickie

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    Hi Brenda,

    Thanks for sharing your experience!

    I tried one fourth of a pure b complex some weeks ago and felt quite bad. I found it hard to know which of the components is creating that so I decided to take no mixed product. Perhaps it was also the folate, but in the past I also had problems with B6.

    You said, that you started with one eighth. Where are you now and how much time has it taken to get there?

    Do you have any improvements from taking the b complex?

    I tried to correct deficiencies during the last months and I only eat fresh organic food and no convenience food. I also like to eat grasses and rice bran.
     
  12. Wickie

    Wickie

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    Hi ahmo,

    unfortunately my brain is still not working well. I also realized that I changed from hypothyroidism to symptoms of a hyperthyroidism the last days.
    I will get through your Information as soon as I am able to do that.

    I am housebound for years now and any worsening changes my situation to bedridden. Do you think that it is worthwhile to try methylation again with respect to my genetic disposition?
     
  13. Wickie

    Wickie

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    Yes, I did the test from 23andme.com.
     
  14. mariovitali

    mariovitali Senior Member

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    Great. Could you look at the following SNPs and tell us which Homozygous/Heterozygous mutations you have?


    DPAGT1

    rs643788(Risk C)
    rs28934876 (Risk C)


    ER Stress response

    rs13045 (EIF2AK3-PERK) : Risk C
    rs2239815(XBP1) : Risk C
    rs10918270(ATF6) : Risk A
    rs391957 (HSPA5) : Risk C



    GCH1, associated with lower levels of BH4

    rs10483639( Risk C)
    rs3783641(Risk A)
    rs8007267(Risk T)
    rs12147422 -(Risk C)
    rs3783637 - (Risk T)
    rs3783641 - (Risk A)
    rs41298442 - ( Risk T)
    rs4411417 - (Risk = C)
    rs752688 - (Risk = T)
    rs841 - (Risk A)
    rs998259 - (Risk=T)
    rs7147286 - (Risk=A)


    NDUFS7

    rs2332496( Risk A)
    rs11666067 (Risk A)
    rs1142530 (Risk T)
    rs11666067(Risk A)
    rs2074895(Risk A)



    PAH Gene - Phenylalanine levels handling

    rs10860936 (Risk C)
    rs1722387 (Risk C)
    rs1522305 (Risk C)
    rs1522296 (Risk A)
    rs772897 (Risk C)
    rs1522307 (Risk G)
    rs11111419 (Risk T)



    Choline

    rs3733890 (Risk A)
    rs2461823 (Risk C) NAFLD Disease
    rs7643645 (Risk G) NAFLD Disease
    rs7946 (Risk T) (PEMT)
    rs4244593 (Risk G) (associated with PEMT)
    rs2236224 MTHFD1 (Risk A)
    rs2236225 (Risk A) (MTHFD1)


    CHDH (Susceptibility to Choline deficiency)
    rs9001 (Risk G)
     
  15. brenda

    brenda Senior Member

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    I am taking about one quarter but not every day. I do not notice any improvement from that which has taken a few months of going slowly. I get increased inflammation. Choline has helped more.
     
  16. ahmo

    ahmo Senior Member

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    @mariovitali about those snps you've listed...I have them all. where you list risk, does that mean if I have a hetero in those places, including the letter you've listed as risk, that this represents risk for me? Thanks
     
  17. mariovitali

    mariovitali Senior Member

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    If you have the letter which is designated as 'Risk' in any one position then means you have Heterozygous mutation to the specific Gene, if you have the risk Letter in both positions then you have a Homozygous mutation.

    example :

    rs1722387 (Risk C)

    If i have C;C then i have homozygous SNP. If i have either :

    C;T or T;C

    then i have heterozygous SNP.


    If i have

    T;T

    Then this means that there are no SNPs occurring to this gene.


    Since you have SNPs on the genes listed, please consider looking at my original post and try the regimen.
     
    Last edited: Aug 23, 2015
    ahmo likes this.
  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi@Wickie
    I am sorry to hear how bad it is for you at the moment. I have tried methylation and in my experience I found that it was better when I stopped the methylation and did other support supplements first.
    As possible choices to start I would suggest a good multi-mineral formula along with a magnesium.
    And a low dose multi-B formula.
    And vitamin C. But you might want to further research (if you can) your specific symptoms and consider what might be useful.
    That said, there are no guarantees of anything. But I would take a break from trying to figure out the methylation for a while and reassess.
    I just went back and looked at your post. Most people are deficient in magnesium more than they need potassium. These two minerals give similar symptoms.

    Perhaps you can talk about what symptoms are worst for you and that you are trying to treat.
     
  19. Wickie

    Wickie

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    Brenda, if you don't have any improvements and increased inflammation, why are you taking it?
     
  20. Wickie

    Wickie

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    @mariovitali
    I will try to list up the results later today
     
    mariovitali likes this.

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