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My story & methylation protocol (+some questions)

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Nana86, Feb 9, 2014.

  1. Nana86

    Nana86

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    Hello everybody,

    I´m a 27 year-old women living in Germany. I have been very sick for the past two years and although I already got a lot better I am still having some issues (I think due to low methylation) and hope I can find some hints here [​IMG]

    This is my story in short:

    In the first year (2012) I was bed-ridden for most of the time, couldn´t hardly eat anything and lost around 30kg during that time.
    After the first year I found a doctor that diagnosed a Mitochondriopathia due to high nitric oxide levels, a strong histadelia, gluten sensivity (IGG4) and lactose intolerance. Before I got sick I didn´t have any food intolerances.
    Then I was treated with CoEnzyme Q10, Vitamin B12 injections and high dose Vitamin C. In addition to that I started eating as best as I could. My ATP-levels improved from lower than 10% of the normal range up to 200%. I felt a lot of improvment but was still very weak with a variety of symptoms.

    Then I consulted another doctor in July 2013. He found out I was deficient in various minerals& vitamins, that my neurotransmitters were mixed up (very low epinephrine and norephinephrine; serotonine and dopamine were okay) and he diagnosed COMT polymorphism (MET/MET). He subscribed to me: SAMe, Methylcobalamine (sublingual), folate, biotin, Vitamin B-complex, Vitamin C, Amino acid-Complex, Potassium, Magnesium, Vitamin D, Selenium. Though I had some problems (most with SAMe) taking everything I got used to it and could improve my health.

    Since my muscles were still very weak and I had a strong fatigue (although much better than before) my doctor got me checked in January 2014 again and found out I am A1298C-heterozygotous and that my folate levels are extremely high. In addition to that my intracellular Vitamin B6 levels are extremely high, too. According to the new results I got: 5-MTHF 500mcg (I am now just taking 1/3 of it, because I want to start slow), zinc,copper, Vitamin A.

    Because of the zinc I got a strong headache, but am still taking it for 2 weeks already. And when I started 5-MTHF 4 days ago a felt I got a bit more energy, but I also feel a high pressure in my brain and can hardly concentrate.

    Now I got several questions but unfornately my doc can´t really help me with this.

    The questions are:

    Is headache due to zinc intake normal in such a health condition as mine?

    Is it also normal to feel pressure in the brain due to 5-MTHF intake?

    What about elevated Vitamin B6 levels? Everytime I get checked on Vitamin B6 my levels are extremely high (although I am just taking around 30mg weekly in my B-complex). Would it make sense to try P5P or are there any contraindications?

    I would be really happy about any hints or experiences [​IMG]

    Yours

    Nana
     
    Critterina likes this.
  2. Critterina

    Critterina Senior Member

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    @Nana86 ,

    I'm certainly not able to understand everything that is going on with you, but if you have a pressure headache, don't take B6 or P5P, because it could be a sign that you have too much already. I would quit your B complex and see if your headaches go away.

    My experience was that I took 100 mg B6 (pyridoxine hydrochloride) daily for several months and was still B6 deficient, as determined by serum amino acid levels. I switched to P5P and cured the deficiency.

    Sometimes you have to be your own detective. If you can just make one change at a time and see the effect, that's the best way, ususally, to know what is doing what to you. Some people quit almost everything, then just add one thing at a time. Of course, there are risks either way.

    Best of health and best of luck!
     
  3. WoolPippi

    WoolPippi Senior Member

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    I say: yes.
    Increasing Zinc intake will release excess Copper from tissues in your body. This Copper will float around, especially in the brain, and cause "Copper dump". (you can search on this term)
    This will give all kinds of symptoms in the brain. I imagine head ache fits in.

    I corrected my low Zinc over the Summer and experienced lots of Copper Dump, it especially messed with my neurotransmitters and I got very edgy, irritated, hormonal and desperate. Which is why I took Zinc in small amounts (7 mg per day). I also ate 85% Lindt chocolate which has Copper in it. (It's ok to take Copper with your Zinc, when you are correcting your Zinc/Copper levels)

    Getting rid of the excess Copper was important and bile and poo are the fastest way. Ill people such as you and me often need some help with bile production. Acidifying the stomach acid works well. I take HCL with each meal. But diluted vinegar is ok too.

    sorry that I only have this personal experience to offer but it chimes in with yours: go low in dose, go slowand help the body to expell waste. Anna.
     
    Last edited: Feb 10, 2014
    Wayne likes this.
  4. WoolPippi

    WoolPippi Senior Member

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    We share the same mutation, I am heterozygote for A1298C too. I have not yet figured out if that's really something. I hope that with a heterozygote mutation at least some of the enxymes get made correctly and do their work.

    However, I have another mutation that renders my high blood level tests of folate and B12 useless.
    I offer you this as a thought, that lab levels may not actually say enough about functionality

    I am homozygote for MTR A2756G, so all those enzymes are made wrong.
    it means that although blood levels of B12 levels and folate look normal to doctors, high even!, they cannot be used properly by the cells.
    Only since taking mB12 and Folinic acid can my cells utilize the stuff. I've not been properly tested since I started supplementing but have noticed the symptoms (of detox and more fatigue and brain chatter. Which all go away when I take a day rest of methylation supplements)
    (I was tested for homocysteïne which had fallen through the floor, so low. Since supplementing.)

    Perhaps we share this mutation too. Or there is another reason why your blood levels don't reflect your health.

    btw, don't ever let a doctor say: "now look here, missy, your labwork looks great so you are healthy". That's not how labwork should be read. It can only tell a doctor that your kidneys didn't fall out of your body or something didn't explode.
    Values that are "in range" or not the same as values that are optimal.

    I avoid B6, it makes me feel ill. Don't know why, it may be related. I've heard others do the same, here on the forum, they had a theory.

    Well done on getting so much better already!

    EDIT this post was completely rewritten since it was first posted because fluffbrain here got her mutationnumbers mixed up.
     
    Last edited: Feb 10, 2014
  5. PeterPositive

    PeterPositive Senior Member

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    Hi Nana86,
    just a question. If your latest blood test reported "extremely high" folate levels, why are you getting 5-MTHF? You are adding more folate.

    As far as I can understand MTHFR A1298C, especially heterozygous, shouldn't affect your folate levels so badly.
     
  6. Milford

    Milford

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    High Folate and/or B12 in the blood can be a result of Lithium deficiency. Lithium is needed to get folate and b12 into the cells. Some people with certain SNPs are prone to dumping Lithium into the urine.... I think it is particularly with the MTR/MTRR mutations.
    If you have had a Hair Analysis done, you could check on that to see what your lithium level is.
    I used the Hair test from Doctors Data in the US..... My lithium was extremely low.
    I supplemented with Lithium Orotate , 5mg twice a day and it has made a BIG difference.
    There is a LOT more to methylation than just MTHFR.
    Did you run the 23andme gene test, or did your doctor do individual SNPs ?
     
    Wayne likes this.
  7. PeterPositive

    PeterPositive Senior Member

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    That's interesting in my latest hair test lithium was below optimal.

    I have to say I don't take hair tests very literally. I don't know where they get their optimal ranges and if you change lab you'll notice they often vary pretty significantly.

    Also I have sometimes a hard time understanding exactly the meaning of some values. E.g. I have very high potassium in my hair but my blood levels are just normal (4.1) Since doctors typically don't even want to look at those type of tests I mostly do them to check my levels of mercury and other pollutants.

    Anyways interesting point about lithium levels. Would it make sense to check serum levels?[/quote]
     
  8. Nana86

    Nana86

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    Thanks a lot for your answers! :)
    @Critterina , I have had already quit my B-Complex around 2-3 weeks ago, but it didn´t change anything. I think the headaches are coming from the zinc, but the headaches got a bit better...until I started taking 5-MTHF and stopped normal folate (my doctor told me to do so).

    (@PeterPositive ) Although I just got A1298C heterozygotous and high intracellular and extracellular folate levels 5-MTHF has helped me A LOT so far. I really didn´t expect anything from it, but it helped me with my circulatory problems. For the first time since I got sick (=2 years) that aspect of my sickness is almost gone!! :) But unfortunately I now got headaches because of 5-MTHF and I partly feel pretty dizzy. Is that normal? Btw, in the first week I took around 150mcg and over the past week 250mcg.

    Concerning Vitamin B6 I tried to take the activated form (P5P) for the last 3 days and I just took around less than 5mg, but I got such a strong reaction: dizziness, headache, nausea...but all of it disapeared after around 45 minutes. Could that be a positive thing? Or is that a strong sign to avoid P5P?

    @WoolPippi , I´m hearing the first time of Copper dump. Thanks for that hint...that makes me calm down a bit :)

    @Milford , thanks for your answer :) Unfortunately my folate levels within the cells are also high...but I assume that the body stores it (like Vitamin B6), but cannot use it....
    Because of genetic testing: I just got the MTHFR and COMT testing done (my doctor advised me to do that). Unfortunately I am a bit short of money since I can´t go to work so far...is there anything REALLY important to check? I´m now like 50% healthy and I hope to get that much better that I can go to work and then affort further testing.

    @everybody, I read a lot more about methylation over the past two weeks, but I still have soo many questions ;)
    For methylation I am now taking: 100mg SAMe, sublingual high-dose methylcobalamine, 250mcg 5-MTHFR, a tiny bit of P5P and a lot of cofactors.
    Is there anything important I should add?
    I read RichvK´s protocoll advise and he´s also talking about folinic acid, but I don´t really understand if this is important for me. Does anybody know?

    And is there anything else I can do? (besides eating best as I could and taking probiotics)

    Thanks so much for your answers! :)

    Nana
     
  9. Critterina

    Critterina Senior Member

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    @Nana86 ,
    Sorry I don't have any answers for you. I have an opinion: If B6/P5P and zinc seem to give you headaches, I would stop any level of them, at least for a trial.

    I was recommended Bluebonnet "chelated multi-minerals plus boron" because of suspected low minerals (low hormone levels and some amino acids, I think). Whenever I checked the ratios of the minerals in that formulation, they were exactly what they were supposed to be. My only problem was that my selenium went high after 7 months. I don't know - if you test low for minerals again, when you can do testing, you might consider it.
     
  10. PeterPositive

    PeterPositive Senior Member

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    Interesting, seems to confirm that lab tests don't necessarily "tell the truth" :)

    It seems headache is a popular side effect with methylfolate. For me 5-mthf has been a powerful anxiety booster so I started slowly at 400mcg and in the last week I've upped the dose to 800 without side effects. I would recommend the same approach to you. Start at a comfortable dose and be patient. Stay on that dosage for at least 1-2 weeks and then add an extra bit and see if you can handle it.

    There's however another piece of the puzzle, which is what Freddd describes as paradoxical folate deficiency. You may want to look it up by searching in this forum.
     
  11. Nana86

    Nana86

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    @Critterina , thanks a lot for the tip :) I´ve decided to stop the P5P or at least just take a very small amount every other day, since after taking it my kidneys start to hurt quite a bit. I´ve had that problem last summer when I started the treatment, too. When I added 5-MTHF 2 weeks ago I just felt a little pressure in my kidneys but since adding P5P it got much worse...although it gives me some more energy and let me dream again (my doc told me when the body doesn´t have enough B6 or can´t use it a person is not able to have dreams anymore and that also is a problem of me).
    Hmm...do you know if such kidney problems have been described as a side effect of the methylation protocol before?

    @PeterPositive , I read somewhere that RichvK said that normal folic acid does compete in the body with 5-MTHF and that if somebody is undermethylating the intake of synthetic folic acid could lower 5-MTHF...maybe that´s the reason why it helps me...before I was taking high amounts of folic acid on a daily basis... :( Or maybe I am lacking a cofactor for 5-MTHF?!

    Btw, does anybody of you guys now if it was necessary for me to take folinic acid, too?

    Many thanks for your help! :)

    Nana
     
  12. Critterina

    Critterina Senior Member

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    Sorry, I've never heard of it. But then there's a lot I've never heard of. For me, anything that makes my kidney's ache is something to be avoided - those are super-important sensitive organs that I don't want to mess with.
     
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  13. PeterPositive

    PeterPositive Senior Member

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    Yes, the same is also said by other methylation doctors. In general folic acid should be avoided and substituted with a more "active" form of folate such as folinic acid or methyl-folate although the former might not work well for people with an MTHFR defect. So it seems that 5-MTHF is the best option.
     
    Nana86 likes this.
  14. Nana86

    Nana86

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    Thanks again for your answers :) I am now on 500mcg of 5-MTHF (took me around 3 weeks to get here) and I think it´s helping me a lot (although there are also some negative side effects...). In his Simplified Methylation Protocoll RichvanK states that 200mcg of 5-MTHF should be taken. Does that mean I should generally stick to a 200mcg-dose or get higher if I can?!

    And could anybody recommend a good brand for buying folinic acid?
     
  15. ahmo

    ahmo Senior Member

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    Hi Nana. I tried folinic several times, it was never helpful for me. Rich's SMP did not work for me. But Freddd's Protocol has returned me to the land of the living.
    You do not need both folinic and MTHF. I'm now on 9.6mg MTHF. It's taken me many months to reach this level, along w/ 9 mg MB12, 7.5 mg AdB12. I've increased the MTHF by 100-200mcg every day or 2, according to my symptoms. Fortunately, my symptoms are obvious and few; acne, pimples on neck. Here's a good FAQ page from phoenixrising member howirecovered:http://howirecovered.com/active-b12-therapy-faq/
     
    Nana86 likes this.
  16. Nana86

    Nana86

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    @ahmo, thanks for the link and the info :) I am also having some issues with bad skin. What really has improved it was taking selenium, zinc and Vitamin A. Have you already tried that ones?
    Unfortunately I got some red, dry, round, itchy patches on my arms and in my face...they first got a lot better, but since taking 5-MTHF it got SO much worse (although most of the pimples are still gone...) :(
    I also got a histadelia and I am wondering if there was any connection...do you/ or anybody else know about that?!
     
  17. ahmo

    ahmo Senior Member

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    Yes, I'm taking those things. I no longer have skin issues, except for these warning signs. Search out one of Freddd's list of symptoms. These cover both "over" and "under" methylation. Sorry I can't find a link for you in this moment.

    Histadelia: It took me a long time to come to terms with this. I started w/ the info on roosclues.blogspot, which documents the search for underlying histamine issues and how to treat them. Very user-friendly site. lowhistaminechef.com is the site I now most frequently go to. Certainly there's a connection. Now that I'm not eating histaminic foods, and using anti-histamine supps (rutin, royal jelly, quercetin), my reactions are under control. For the first time in a decade I'm not a few breaths away from the next skin outbreak.

    The itchy patches you mention...it's possible the extra folate is pushing some detox. I've found in my current practice of coffee enemas, that I need to take antihistamine supps straight away to prevent feeling toxic (spacey, irritable). This points to histamines being released. On the other hand, Freddd cautions against assuming our responses are "detox" when we increase folate. Sorry, don't have the time to give you any references just now. ahmo
     
  18. Milford

    Milford

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    [/quote]
    I agree on the hair test thing......some things! like sodium, potassium
    [/quote]
    I agree re the Hair tests, the interpretation of them seems to be very complicated. I wouldnt pay too much attention to things like Sodium and Potassium. But, from what I have read, Lithium on a Hair Test does seem to give a fairy accurate measure of blood levels during the previous 3 months or so. My level on the Hair test was off the bottom level . A serum Lithium was Zero.

    BUT.... although Yasko says serum is an OK test for Lithium, the labs who run this test say that the range of normal is the theraputic range for people who are on Lithium carbonate therapy for Bipolar Disorder. They are taking doses that are way above what people are supplementing with with Lithium Carbonate.

    I repeated my Hair test recently. The Lithium is now up above the 50th centile. A serum test was still zero. I am just about to do a Whole Blood Elements with Doctors Data, which includes Lithium at Physiological levels. Then I will see how the three tests marry up.
     
  19. Milford

    Milford

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