Why does any B vitamins cause a huge flair in fibro pain?

Discussion in 'Fibromyalgia Main Forum' started by place, Feb 21, 2011.

  1. place

    place New Member

    Does anyone know why this is happening???

    I am trying to get pregnant and my doc put me on folgard. My pain has been really bad with no cause, then I realized it was the B vitamin as I have had this happen a couple of years ago.
  2. lgp

    lgp Well-Known Member

    I have tried to renew my vitamin regimen several times in the past few years. Every time I do, within days my pain level is HUGE. The B/B12 vitamins that I had tried to take at another time also increased my pain level dramatically. I am currently taking nothing, and feeling just fine. Maybe one of these days I will be able to pinpoint exactly which vitamins to stay away from and which ones I can tolerate, but it is very confusing and I am not willing to tolerate weeks of pain 'to get over that hurdle' that some others have suggested.

    I do remember taking a prescription multi-vitamin whe I was pregnant that came in a turquoise bottle that made me feel just great. I continued to take them post-pregnancy, but after awhile my doctor would not allow it any longer. I often wonder what set these vitamins apart from regular multi-vitamins.

    Try asking your doctor if you can take a combination of seperate supplements for the most critical vitamins needed. Perhaps that may help.

    Good luck--Laura
  3. richvank

    richvank New Member

    Hi, place.

    I'm very interested to hear that Folgard caused a flair in your fibro pain.

    Folgard contains vitamins B6, B12 and folic acid in their common commercial forms, which must be converted by the body before they are in their active forms.

    Active forms of B12 and folate are the essence of the methylation cycle treatments for chronic fatigue syndrome, which are helping a lot of people and are growing in usage, particularly since there is reason to believe that they will help to put the retroviruses into latency. I don't know whether these treatments are effective in "pure" fibromyalgia, though.

    Do you also have CFS, or do you have fibro alone?

    If you also have CFS, Folgard may be stimulating your methylation cycle, which is partially blocked. In CFS, this usually causes detox or die-off symptoms at first, as the body's detoxication and immune systems apparently come back into more normal operation.
    Over time, these symptoms drop down, and improvements are reported by over two-thirds of those with CFS who try this type of treatment.

    Best regards,

  4. gapsych

    gapsych New Member

    I know that folate is important to take during pregnancy.

    Would the risks outweigh the benefits if you are pregnant. Don't know how a herx would effect a developing fetus.

    Sign me curious.

  5. richvank

    richvank New Member

    Hi, gap.

    I think that's a very good question, and I don't believe there is any data from which to come up with an answer. I have been the only male member of a CFS pregnancy group for quite a few years, and I have always been reluctant to suggest treatment for CFS during pregnancy or nursing, because there are no data on this, and neither I nor anyone else wants to experiment with the health of a new baby at stake. After the women in the group had given birth and were no longer nursing, two of them started the methylation protocol, and both reported benefit from it.

    Nowadays, given the relative success of the methylation treatment, I might suggest that a woman who wants to become pregnant consider holding off on the pregnancy and trying the treatment first. Of course, this should be considered together with the woman's husband and physician, and I understand the "biological time-clock" consideration in doing this.

    Best regards,

  6. place

    place New Member

    Thanks for all your feedback! I feel like it is not normal.

    Rich I have Fibro, but I have a lot of fatigue. I can hold a desk job after taking a lot of medication. I used to run marathons =(

    I'm not sure if it is a reaction or herxing. I was also on a blood thinner lovenox. I stopped that and then I stopped the folgard, the pain stopped within 12 hours off the folgard. I tried b vit before and had the same issue.

    I take a preg vit which has extra b in it. What are symtoms of overdose of B?

    If it is herxing, how long does it typically last?

    Rich, the Meth treatment works for CFS, not Fibro?
  7. richvank

    richvank New Member

    Hi, place.

    A normal, healthy person does not experience symptoms from overdose of most of the B vitamins. Vitamin B6 has been reported to cause symptoms of neuropathy, which is reversible if the B6 is stopped, but the dosage involved were more than 1 gram (1,000 milligrams) per day.

    I think that if your symptoms resulted from taking the Folgard, it is likely that you have a partial methylation cycle block. If you would like to find out for sure, you could ask your physician or chiropracter to order the Health Diagnostics and Research Institute methylation pathways panel. Contact info for this is pasted below, together with information for interpreting the results of the panel.

    I don't use the term "herxing" in connection with the methylation treatment, because I think the symptoms people have experienced on it are associated more with mobilization of stored toxins than they are with a Herxheimer reaction, though I think some people have experienced die-off of pathogens on it as well. If my hypothesis is correct, both the detoxication system and the immune system return to more normal operation when the partial block in the methylation cycle is lifted, and they then go to work on the backlog of toxins and pathogens that have accumulated while the person has been ill, and they have been dysfunctional.

    On the methylation treatment, the experience in our clinical study is quoted from our postger paper at the 2009 IACFS/ME conference here:

    "Various patients reported some early exacerbation of symptoms, which in most cases was followed by a greater improvement in symptoms. Three of the patients found it necessary to decrease their dosage frequency to every second or third day for several days, until they could tolerate the full daily dosage schedule.

    "Sixteen of 30 patients (53%) reported an initial worsening of symptoms, beginning in most of these cases within 3 or 4 days, but in some cases beginning at up to 2 weeks. Most of the symptoms were mild, and none of the patients discontinued usage of the supplements during the first 3 months. The most common side effects were gastrointestinal (pain, cramps, constipation, or diarrhea), reported by 6 out of 30 patients or 20%; increase in pain, reported by 4 out of 30 or 13%; and increase in fatigue, reported by 3 out of 30 or 10%. Other symptoms, reported by one patient each, were a decrease in appetite, poor sleep, weak legs, flu-like symptoms, and an increase in anxiety and depression.

    "For those who experienced improvement, the time to self-reported improvement on the protocol was an average of 5.6 weeks, with a range from immediate improvement (which was rare) to as long as 8 weeks before improvement was experienced."

    I don't know if the methylation treatment will work on "pure" fibromyalgia or not. I know it works on people who have both CFS and fibro, because we observed that in our clinical study. The hypothesis on which this treatment is based applies to CFS. I don't have a hypothesis to explain "pure" fibro. I wish I did. Because I don't have a hypothesis to support use of this treatment in "pure" fibro, I have not encouraged people with "pure" fibro to try it. I believe that the basis for its use in CFS is solid, and that's why I encourage people with CFS to try it, with the cooperation of their physicians.

    Since you experience a lot of fatigue, you may have CFS as well. If you run the methylation pathways panel, you will be able to find out. I regard this panel as the best diagnostic for CFS that is currently available.

    I hope this helps.

    Best regards,


    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinician’s letterhead.

    Available from:

    Health Diagnostics and Research Institute
    540 Bordentown Avenue, Suite 4930
    South Amboy, NJ 08879
    Phone: (732) 721-1234
    Fax: (732) 525-3288

    Lab Director: Elizabeth Valentine, M.D.

    Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone.

    Interpretation of the Health Diagnostics and Research Institute
    Methylation Pathways Panel

    Rich Van Konynenburg, Ph.D.

    Several people have asked for help in interpreting the results of
    their Health Diagnostics and Research Institute methylation pathway panels. Here are my suggestions for doing so. They are based on my study of the
    biochemistry involved, on my own experience with interpreting more
    than 120 of these panel results to date, and on discussion of some of
    the issues with Tapan Audhya, Ph.D., at the Health Diagnostics and Research Institute.

    The panel consists of measurement of two forms of glutathione
    (reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
    adenosylhomocysteine (SAH), and seven folic acid derivatives or

    According to Dr. Audhya, the reference ranges for each of these
    metabolites was derived from measurements on at least 120 healthy
    male and female volunteer medical students from ages 20 to 40, non-
    smoking, and with no known chronic diseases. The reference ranges
    extend to plus and minus two standard deviations from the mean of
    these measurements.

    Glutathione: This is a measurement of the concentration of the
    reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. From what I've seen, most people with chronic fatigue
    syndrome (PWCs) have values below the reference range. This means
    that they are suffering from glutathione depletion. As they undergo
    the simplified treatment approach to lift the methylation cycle
    block, this value usually rises into the normal range over a period
    of months. I believe that this is very important, because if
    glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
    that build up in the absence of sufficient glutathione to take them
    out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
    convert to methylcobalamin, which is what the methylation cycle needs
    in order to function normally. Also, many of the abnormalities and
    symptoms in CFS can be traced to glutathione depletion.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. In many (but not all) PWCs, it is elevated above the normal
    range, and this represents oxidative stress.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. Adenosine is a product of the reaction that converts
    SAH to homocysteine. In some PWCs it is high, in some it is low, and
    in some it is in the reference range. I don't yet understand what
    controls the adenosine level, and I suspect there is more than one
    factor involved. In most PWCs who started with abnormal values, the
    adenosine level appears to be moving into the reference range with
    methylation cycle treatment, but more data are needed.

    S-adenosymethionine (RBC) (SAM): This is a measure of the
    concentration of SAM in the red blood cells. Most PWCs have values
    below the reference range, and treatment raises the value. S-
    adenosylmethionine is the main supplier of methyl groups in the body,
    and many biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    in CFS, it appears to result from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS can be tied to lack of
    sufficient methyation capacity.

    S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
    concentration of SAH in the red blood cells. In CFS, its value
    ranges from below the reference range, to within the reference range,
    to above the reference range. Values appear to be converging toward
    the reference range with treatment. SAH is the product of reactions
    in which SAM donates methyl groups to other molecules.

    Sum of SAM and SAH: When the sum of SAM and SAH is below 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathione beta synthase (CBS)
    enzyme, though this may not be true in every case.

    Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity.

    5-CH3-THF: This is a measure of the concentration of 5-methyl
    tetrahydrofolate in the blood plasma. It is normally the most
    abundant form of folate in the blood plasma. It is the form that
    serves as a reactant for the enzyme methionine synthase, and is thus
    the most important form for the methylation cycle. Many PWCs have a
    low value, consistent with a partial block in the methylation cycle.
    The simplified treatment approach includes FolaPro, which is
    commercially produced 5-CH3-THF, so that when this treatment is used,
    this value rises in nearly every PWC. If the concentration of 5-CH3-
    THF is within the reference range, but either SAM or the ratio of SAM
    to SAH is below the reference values, it suggests that there is a
    partial methylation cycle block and that it is caused by
    unavailability of sufficient bioactive B12, rather than
    unavailability of sufficient folate. I have seen this frequently,
    and I think it demonstrates that the “hijacking” of B12 is the root
    cause of most cases of partial methylation cycle block. Usually
    glutathione is low in these cases, which is consistent with lack of
    protection for B12, as well as with toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
    This form of folate is involved in reactions to form purines, which
    form part of RNA and DNA as well as ATP.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma.
    Most but not all PWCs have a value on the low side. This form is not used
    directly as a substrate in one-carbon transfer reactions, but it can
    be converted into other forms of folate. It is one of the
    supplements in the simplified treatment approach, which helps to
    build up various other forms of folate.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. In PWCs it is lower than the mean normal value of 3.7
    nanomoles per liter in most but not all PWCs. This is the
    fundamental chemically reduced form of folate from which several
    other reduced folate forms are made. The supplement folic acid is
    converted into THF by two sequential reactions catalyzed by
    dihydrofolate reductase (DHFR). THF is also a product of the
    reaction of the methionine synthase enzyme, and it is a reactant in
    the reaction that converts formiminoglutamate (figlu) into
    glutamate. If figlu is high in the Genova Diagnostics Metabolic
    Analysis Profile, it indicates that THF is low.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. Low values suggest folic acid deficiency in the
    current diet. High values are sometimes associated with inability to
    convert folic acid into other forms of folate, such as because of
    polymorphisms in the DHFR enzyme. They may also be due to high
    supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic
    acid in the whole blood. See comments on 5-formyl-THF above. It
    usually tracks with the plasma 5-formyl-THF concentration.

    Folic acid (RBC): This is a measure of the concentration of folic
    acid in the red blood cells. The red blood cells import folic acid
    when they are initially being formed, but during most of their
    approximately four-month life, they do not normally import, export, or use
    it. They simply serve as reservoirs for it, giving it up when they
    are broken down. Many PWCs have low values. This can be
    caused by a low folic acid status in the diet over the previous few
    months, since the population of RBCs at any time has ages ranging
    from zero to about four months. However, in CFS it can also be
    caused by damage to the cell membranes, which allows folic acid to
    leak out of the cells. Dr. Audhya reports that treatment with omega-
    3 fatty acids can raise this value over time.

  8. Heald

    Heald New Member

    Wow, I am experincing the same thing with B vitamin, magnesium and fish oil!!! What in the world??? Also, if I eat shrimp I experience the same thing.

    Your thoughts?
  9. elliespad

    elliespad Member

    Another thought. I am allergic to yeasts. MOST B Vitamins come from a yeast source. I have to get mine from Yeast Free sources. This goes for my oral one and injections of B-12. I ITCH like CRAZY and feel sick if i take them from yeast source. Don't know if any allergies manifest as pain, but thought I would mention it.
  10. place

    place New Member

    I love this board, thanks so much for the help!

    I think I would like to explore the methylation treatment but I do have mold and yeast allergies..

    Elliespad what/where do you get your yeast free B? It would be a good experiment to try for 8 weeks.
  11. elliespad

    elliespad Member

    cant type. tendonitis but,,,

    Cardiovascular Research
    Co-Enzyme B Complex Yeast Free
  12. place

    place New Member

    Thanks for replying elliespad! Sorry about the tendonitis. I am going to order it.
  13. Chelz

    Chelz New Member

    Same thing happened to me. I decided to try a B12 supplement in capsule form from a very reputable company. The dosage was 500 micrograms or milligrams.

    After taking the B Vitamin for about 4 days, I started to flare up, it caused me more abdominal pain, and I just wasn't feeling well. So much for all the hype that B12 is so good for you. I also have fibro with fatigue as well.

    I stopped the vitamin, and symptoms went away for the most part. Very interesting. I have to be careful with everything, even supplements that are supposed to be good for us. Hugs, Chelz.
  14. slowdreamer

    slowdreamer New Member

    I now avoid all these except an occasional B12 injection(Hydroxycobalamin)
    B6 above abou10 mg makes me very agitated.
    i eat whole gluten free grains and wheatgerm as a substitute.
    Best wishes
  15. place

    place New Member

    I have ordered B vit without Yeast. I will let you know how it goes... I am surprised how many other people have this issue.

    I was watching Doctor's show, I never do but I was between channels.... Anyway, they said that chapped lips were a sign of low B. Once I stopped the folgard, I got really chapped lips...

    Just something to think about..
  16. rosemarie

    rosemarie Member

    The only new pain I have is in my bones, they hurt to the touch, such as my ribs, sternum,sholder blade, and places in my back where I have some DDD going on. Every once in a while the bone pain gets really bad but I have not connected it to my taking B-12. i have been on b-12 and other B-vitimans and have not had the responce that others have discribed here. I have other pain issues thatn fibro, arthritis, DDD Speinal stenosis, CMP, need both knee's replaced but due to lack of money that won't be happening any time soon.
    I did find this post interesting as I had not heard of vitiman B-12 doing this before.
    Thanks for the new info.
  17. place

    place New Member

    Have been on my non-yeast B and pain is back.

    For those of you who have Taken B and had pain, how long did you take it?

    I am going to try to keep taking it to see if there is a Pain period I need to get through to get to a better stage.

  18. rosemarie

    rosemarie Member

    I have been on b12 for months and only in the past month or so have I noticed that my rib cage hurts to the touch almost like when you get chostocondritis , but it does not go away. I have pain in new places like my hips, inside of knee's and I have a pain full lump in my right forearm could all this be caused by the Vitiman B 12? It does help me to relax and I am taking a sublingual dose. I have not heard that B 12 or that any B vitimans case more pain.
    I am wondering if it is the reason I have been in more pain lately in bones and joints. I dont' know the reason. I hate this new pain and want it to stop.
    Thanks for the info.
  19. Mikie

    Mikie Moderator

    I wouldn't expect him/her to understand the methylation protocol. Perhaps taking in some info on it would help educate the doc. Recently, folate has been considered important for pregnant women to take.

    Rich, thanks for your info. As always, you really define the discussion to help us understand.

    BTW, I have had flares/purges from taking the MP supps. They differ a bit from Herxing for me but encompass some of the same reactions.

    Love, Mikie
  20. place

    place New Member

    I have had to decrease my time on B. Twice I forgot not to take it the night before my Acupuncture and it was pain, pain and more pain every time a new pin would go in.

    I have to say though last night I got a new piece of the puzzle last night.

    For two days (last B pill taken 5 days ago) my lips were so chapped. every 15 min with chapstick and downing the water like 20 8oz glasses. But nothing would stop the burning. So I took a B pill and within an hour it went away!

    I always need chapstick, in fact many of my family members make fun of me and get me 20 sticks for my b-day or Xmass.

    Weird.... I know but just thought I would share my bodies need for B, today I don't have as much pain as I have in the past after taking the B

    I might do a chart on this with chapped lips, pain level and day the B is taken. I am also going to look up other B symptoms.

    As always I will keep you posted!

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