Home Forums General Discussion Methylfolate side effects

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  • #308693
    Trudi
    Participant

    New information when treating MTHFR:
    http://mthfr.net/methylfolate-side-effects/2012/03/01/

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #374802
    mary77
    Participant

    Trudi,
    Thank you for posting the information on methylfolate side effects. The past few days I had SEVERE joint and muscle pain…much worse than I “normally” have day to day. I had taken methylfolate for 3 days in a row, something new to my system. I am convinced that I was reacting in a negative way to the supplementation. This is a good reminder that what is good for one might not be for another. We are all different in our needs and reactions.

    I am feeling much better today without the methylfolate. Just want to caution others that might be thinking of taking methylfolate. The article you linked to is full of good information.

    Mary

    #374803
    Trudi
    Participant

    Hi Mary–
    Don’t know if you read the embedded article: http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/. A lot of good reasons why we may be having problems. This one stuck out:

    3. Superoxide Dismutase (SOD). If glutathione and electrolytes don

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #374804
    Spiffy
    Moderator

    Mary77, because you reacted so strongly probably gives weight to the fact that your body desperately needs the methylfolate. Your body was so excited to get this help that it tried to get a lot of stuff started and got clogged. Look up Dr. Ben Lynch. He is the MTHFR guru and shares the same mutations I do. His wife had suffered for years as a younger woman with ra, but is now off meds by changing her lifestyle and also addressing her mutation. Do not give up on it, but perhaps start a lot more slowly.

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #374805
    mary77
    Participant

    Thanks, Trudi and Spiffy…

    I intend to continue with methylfolate, but at a much reduced dosage!! Will also look into the electrolytes Dr. Lynch recommends. Glutathione and SOD seem quite important, also. Dr.Lynch states that treating this methylation problem is complicated…but then I guess those of us on this forum understand the meaning of “complicated”!
    Mary

    #374806
    Linda L
    Participant

    I started to take B Complex capsules not long time ago. So far I have taken it maybe 5 times. I remember when I took it first time I was feeling so well. Two days ago after I took it I had a terrible rash all over my body which started in the evening and lasted all night till 4 am. That rash exceeded everything I knew about it. Also my muscles and joints were very painful and hot. The same day I took other supplements like iron, probiotics, collagen, but my main suspects were iron and B Complex. Yesterday and today I didn’t take anyone and I feel better. Tomorrow I am going to take iron but without B complex.
    And now I have found this topic on our forum and bingo.
    B complex I am taking is by Thorne and includes: L-5 Methyltetrahydrofolate 400mcg /is it same as Methylfolate?/, Methylocobalamin B12 400 mcg and other B vitamins. What is strange it includes also B3 in the form of Niacin 10 mg and Niacinamide 130 mg and on the website Trudi has sent the advise they are giving is to take B3 in case of side effects from Metylfolate. If this product is an offender what to do? My iron is very, very low and folic acid is required in order to absorb it.
    Yes, you are all right. It is so difficult!
    Linda L.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #374807
    Linda L
    Participant

    Can people with heterozygous gene take a regular B-Complex supplement?
    Linda L.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

    #374808
    Maz
    Keymaster

    @Linda L wrote:

    Can people with heterozygous gene take a regular B-Complex supplement?
    Linda L.

    I do, but my doctor urged me to ensure the B-Complex did not contain any methylated forms of folate due to risk of overdosing as I also use methylfolate drops with methylcobalamin for the gene mutation.

    #374809
    Linda L
    Participant

    Thank you Maz. I will look for a good quality B-Complex.
    Linda L.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, supplements,
    vitamins and minerals.
    MTHFR heterozygous

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