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B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. Anteah

    Anteah Senior Member

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    Las Vegas, Nevada
    Titiger, I keep it under my upper lip between the lip and a gum, its a relatively dry area and it stays there for a good 3 hours.
  2. Tara

    Tara

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    Wausau, WI
    Alright folks... So I finally got my methylation pathways panel results back... And, as per usual for me, no sounding alarms with anything. Fantastic news. Ha. Does any of the following shed any light on anything, or am I just out another $325? Thanks.

    MTHFR: Heterozygous A1298C

    AMINO ACIDS IN PLASMA

    Glutathione(oxidised) 0.47

    ref. range: 0.16 - 0 . 5

    Glutathione(reduced) 3.4

    ref. range: 3.8 - 5.5

    Derivates

    S-Adenosylmethionine (RBC) 214

    ref. range: 221 - 256

    S-Adenosylhomosysteine (RBC) 48.1

    ref. range: 38.0 - 49.0

    FOLIC ACID DERIVATES

    5-CH3-THF 10.0

    ref. range: 8.4 - 1 2 . 6

    10-Formyl-THF 2.5

    ref. range: 1.5 - 8 . 2

    5-Formyl-THF 1.20

    ref. range: 1.20 - 1 1 . 7 0

    THF .45

    ref. range: 0.60 - 6,80

    Folic Acid 9.9

    ref. range: 8.9 - 24.6

    Fo l i n i c A c i d( WB) 8.7

    ref. range: 9.0 - 35.5

    Folic Acid, active (RBC) 396

    ref. range: 400 - 1500
    NUCLEOSIDE
    Adenosine 23.6
    ref. range: 16.8 - 21.4
  3. Pegasus

    Pegasus

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    can you have a normal methylation panel like you and still have a methylation problem?
  4. richvank

    richvank Senior Member

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    Hi, Tara.

    I'm glad that you ran this panel. It's true that your results are not extremely abnormal, but they are abnormal, as follows:

    Your reduced glutathione is below its reference range, and your oxidized glutathione is high-normal. You thus do have glutathione depletion, and you are suffering from some oxidative stress. The latter is confirmed by your low RBC folic acid.

    Your SAMe is below its reference range, and your SAH is high-normal. This indicates that you have a partial block in your methylation cycle. This is confirmed by your low THF.

    Your folates are generally low-normal to low. This is consistent with loss of folates from the cells via the methyl trap mechanism and reaction of methylfolate with peroxynitrite.

    Your adenosine is a little above its reference range.

    These results suggest that the GD-MCB hypothesis is applicable to your case, and that the simplified methylation protocol is likely to help you.

    If you would like more details, please see the interpretive guide pasted below.

    Best regards,

    Rich


    March 25, 2012
    Interpretation of Results of the Methylation Pathways Panel
    by
    Richard A. Van Konynenburg, Ph.D.
    Independent Researcher


    Disclaimer: The Methylation Pathways Panel is offered by the European Laboratory of Nutrients in the Netherlands and the Health Diagnostics and Research Institute in New Jersey, USA. I am not affiliated with these laboratories, but have been a user of this panel, and have written these suggestions at the request of Tapan Audhya, Ph.D., Director of Research for the Health Diagnostics lab, for the benefit of physicians who may not be familiar with this panel. My suggestions for the interpretation of results of the panel are based on my study of the biochemistry involved, on my own experience with interpreting panel results as part of the analysis of a fairly large number of cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) over the past four years, and on discussion of some of the issues with Dr. Audhya. I am a researcher, not a licensed physician. Treatment decisions based on the results of applying this panel and its interpretation to individual cases are the responsibility of the treating physician.

    Application: In addition to being useful in analyzing cases of ME/CFS, this panel can also be usefully applied to cases of autism and other disorders that involve abnormalities in glutathione, methylation and the folate metabolism.

    The panel includes measurement of two forms of glutathione (reduced and oxidized), S-adenosylmethionine (SAMe), S-adenosylhomocysteine (
    SAH), adenosine, and seven folate derivatives.

    According to Dr. Audhya (personal communication), the reference ranges shown on the lab reports for each of these metabolites were 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 (reduced): This is a measurement of the concentration of the
    chemically reduced (active) form of glutathione (abbreviated
    GSH) in the blood
    plasma. The reference range is 3.8 to 5.5 micromoles per liter.


    Glutathione plays many important roles in the biochemistry of the body, including serving as the basis of the antioxidant enzyme system, participating in the detoxication system, and supporting the cell-mediated immune response, all of which exhibit deficits in CFS. The level of GSH in the plasma is likely to be more reflective of tissue intracellular glutathione status than the more commonly and more easily measured red blood cell or (essentially equivalent) whole blood glutathione level, which is about three orders of magnitude greater, because red blood cells are normally net producers of glutathione. Also, knowledge of the level of the reduced form, as distinguished from total (reduced plus oxidized) glutathione, which is more commonly measured, is more diagnostic of the status of glutathione function.

    In order to be able to approximate the in vivo level of reduced glutathione when blood samples must be shipped to a lab, it is necessary to include special enzyme inhibitors in the sample vials, and these are included in the test kit supplied by these two laboratories.

    Most people with chronic fatigue syndrome (PWCs), but not all, are found to have values of GSH that are below the reference range*. This means that they are suffering from glutathione depletion. As they undergo treatment to lift the partial methylation cycle block, this value usually rises into the normal range over a period of a few months. I believe that this is very important, because
    glutathione normally participates in the intracellular metabolism of vitamin B12, and if it is low, a functional deficiency of vitamin B12 results, and insufficient methylcobalamin is produced to support methionine synthase in the methylation cycle. In my view, this is the mechanism that causes the onset of ME/
    CFS. This functional deficiency is not detected in a conventional serum B12 test, but will produce elevated methylmalonate in a urine organic acids test. In my opinion, many of the abnormalities and symptoms in ME/CFS can be traced directly to glutathione depletion.

    Anecdotal evidence suggests that PWCs who do not have glutathione depletion do have abnormalities in the function of one or more of the enzymes that make use of glutathione, i.e. the glutathione peroxidases and/or glutathione transferases. This may be due to genetic polymorphisms or DNA adducts on the genes that code for these enzymes, or in the case of some of the glutathione peroxidases, to a low selenium status.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. The reference range is 0.16 to 0.50 micromoles per liter.


    Normally, oxidized glutathione in the cells is recycled back to reduced glutathione by glutathione reductase, an enzyme that requires vitamin B2 and NADPH. If this reaction is overwhelmed by oxidative stress, the cells export excess GSSG to the plasma. In some (but not all) PWCs, GSSG is elevated above the normal
    range, and this represents oxidative stress. It is more common in CFS to see this level in the high-normal range. This value may increase slightly under initial treatment of a partial methylation cycle block.*


    Ratio of Glutatione (reduced) to Glutathione (oxidized): This is not shown explicitly on the panel results, but can be calculated from them. It is a measure of the redox potential in the plasma, and reflects the state of the antioxidant system in the cells. The normal mean value is 14. PWCs often have a value slightly more than half this amount, indicating a state of glutathione depletion and oxidative stress. This ratio has been found to increase during treatment of a partial methylation cycle block, but other types of treatment may be necessary to bring it to normal.*

    S-adenosymethionine (
    RBC): This is a measure of the concentration of S-adenosylmethionine (SAMe) in the red blood cells. The reference range is 221 to 256 micromoles per deciliter.

    SAMe is produced in the methylation cycle and is the main supplier of methyl (CH3) groups for a large number of methylation reactions in the body, including the methylation of DNA and the biosynthesis of creatine, carnitine, phosphatidylcholine, coenzyme Q10, melatonin and epinephrine. This measurement is made in the red blood cells because the level there reflects an average over a longer time and is less vulnerable to fluctuations than is the plasma level of SAMe.

    Most PWCs have values below the reference range, and treatment raises the value.* A low value for SAMe represents a low methylation capacity, and
    in CFS, it usually appears to result from an inhibition or partial block of the enzyme methionine synthase in the methylation cycle. Many of the abnormalities in CFS can be tied to lack of sufficient methylation capacity.

    S-adenosylhomocysteine (RBC): This is a measure of the
    concentration of S-adenosylhomocysteine (SAH) in the red blood cells. The reference range is 38.0 to 49.0 micromoles per deciliter.


    SAH is the product of the many methyltransferase reactions that utilize SAMe as a source of methyl groups. In CFS, its value ranges from below the reference range to above the reference range. Values appear to converge toward the reference range with treatment.

    Sum of
    SAM and SAH: When the sum of SAM and SAH is below about 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathionine beta synthase (CBS)
    enzyme, though this may not be true in every case. For those considering following the Yasko treatment program, this may be useful information.

    Ratio of
    SAM to SAH: A ratio less than about 4.5 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, because they affect the rates of the methyltransferase reactions.


    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. The reference range is 16.8 to 21.4 x 10(-8) molar.


    Adenosine is a product of the reaction that converts SAH to homocysteine. It is also exported to the plasma when mitochondria develop a low energy charge, so that ATP drops down to ADP, AMP, and eventually, adenosine. Adenosine in the plasma is normally broken down to inosine by the enzyme adenosine deaminase.

    In some PWCs adenosine is found to be 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 in these patients, and I suspect that 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.

    5-CH3-THF: This is a measure of the concentration of 5L-methyl
    tetrahydrofolate in the blood plasma. The reference range is 8.4 to 72.6 nanomoles per liter.


    This form of folate is present in natural foods, and 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 important form for the methylation cycle. It is also the only form of folate that normally can enter the brain. Its only known reactions are the methionine synthase reaction and reaction with the oxidant peroxynitrite.

    When there is a partial block in methionine synthase, the other forms of folate continue to be converted to 5L-CH3-THF by the so-called “methyl trap” mechanism. Some of the 5L-CH3-THF is broken down by reaction with peroxynitrite, which results from the condition of oxidative stress that is usually concomitant with glutathione depletion.

    Many PWCs have a low value of 5L-CH3-THF, consistent with a partial block in the methylation cycle. Most methylation treatment protocols include supplementation with 5L-CH3-THF, which is sold over-the-counter as Metafolin, FolaPro, or MethylMate B (trademarks), as well as the newer Quatrefolic (trademark) and in the prescription “medical foods” supplied by PamLab, including Deplin, CerefolinNAC and Metanx. There are some others on the market that include both racemic forms (5L and 5R) of this folate.

    When methylation treatment is used, the level of 5-CH3-THF 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 inavailability of sufficient bioactive B12, rather than inavailability of sufficient folate. A urine organic acids panel will show elevated methylmalonate if there is a functional deficiency of B12. I have seen this combination frequently, and I think it demonstrates that the functional deficiency of B12 is the immediate root cause of most cases of partial methylation cycle block. Usually glutathione is low in these cases, which is consistent with such a functional deficiency. As the activity of the methylation cycle becomes more normal, the demand for 5-CH3-THF will likely increase, so including it in the treatment protocol, even if not initially low, will likely be beneficial.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. The reference range is 1.5 to 8.2 nanomoles per liter.


    This form of folate is involved in reactions to form purines, which form part of RNA and DNA as well as ATP. It is usually on the low side in PWCs, likely as a result of the methyl trap mechanism mentioned above. This deficiency is likely the reason for some elevation of mean corpuscular volume (MCV) and mean corpuscular hemoglobin (MCH) often seen in PWCs. This deficit may also impact replacement of cells lining the gut, as well as white blood cells.

    Rarely, 10-formyl-THF is found to be much higher than the normal reference range. If this is found, the patient should be examined for cancer, since cancer cells upregulate this form of folate in order to make purines more rapidly to support their rapid cell division.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma. The reference range is 1.2 to 11.7 nanomoles per liter.


    This form is not used directly as a substrate in one-carbon transfer reactions, but it can be converted into other forms of folate, and may serve as a buffer form of folate. Most but not all PWCs have a value on the low side. It is one of the
    supplements in some methylation protocols. It can be converted to 5L-CH3-THF in the body by a series of three reactions, one of which requires NADPH, and it may also help to supply other forms of folate to the cells until the methionine synthase reaction comes up to more normal activity.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. The reference range is 0.6 to 6.8 nanomoles per liter.


    This is the fundamental chemically reduced form of folate from which several other reduced folate forms are synthesized, and thus serves as the “hub” of the folate metabolism. THF is also a product of the methionine synthase reaction, and participates in the reaction that converts formiminoglutamate (figlu) into glutamate in the metabolism of histidine. If figlu is found to be elevated in a urine organic acids panel, it usually indicates that THF is low. In PWCs it is lower than the mean normal value of 3.7 nanomoles per liter in most but not all PWCs.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. The reference range is 8.9 to 24.6 nanomoles per liter.


    Folic acid is a synthetic form of folate, not found in nature. It is added to food grains in the U.S. and some other countries in order to lower the incidence of neural tube birth defects, including spina bifida. It is the oxidized form of folate, and therefore has a long shelf life and is the most common commercial folate supplement. It is normally converted into THF by two sequential reactions catalyzed by dihydrofolate reductase (DHFR), using NADPH as the reductant. However, some people are not able to carry out this reaction well for genetic reasons, and PWCs may be depleted in NADPH, so folic acid is not the best supplemental form of folate for these people.

    Low values suggest folic acid deficiency in the current diet. High values, especially in the presence of low values for THF, may be associated with inability to convert folic acid into reduced folate readily, such as because of a genetic polymorphism 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. The reference range is 9.0 to 35.5 nanomoles per liter.


    See comments on 5-formyl-THF above. Whole blood folinic acid usually tracks with the plasma 5-formyl-THF concentration. They are the same substance.

    Folic acid (
    RBC): This is a measure of the concentration of folic acid in the red blood cells. The reference range is 400 to 1500 nanomoles per liter.

    The red blood cells import folic acid when they are initially being formed, but during most of their lifetime, 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 of this parameter. 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 oxidative 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 has been found to raise this value over time in one cohort.

    If anyone finds errors in the above suggestions, I would appreciate being notified at richvank@aol.com.

    * Nathan, N., and Van Konynenburg, R.A., Treatment Study of Methylation Cycle Support in Patients with Chronic Fatigue Syndrome and Fibromyalgia, poster paper, 9th International IACFS/ME Conference, Reno, Nevada, March 12-15, 2009. (http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf)












    Allyson likes this.
  5. sedonagal

    sedonagal

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    At the very bottom of this long paper, I found this interesting section about folic acid use in pregnancy possibly contributing to ASD, ADHD, asthma, diabetes, and childhood obesity.

    http://www.imdtheory.blogspot.com/

    Although there appears to be only a little preliminary evidence implicating folic acid supplementation in pregnancy as a causative agent in the pathogenesis of this disease process [ASD, ADHD], the circumstantial evidence suggests that it may be the principal cause. It is a public health catastrophe requiring immediate action by health authorities and governments. Moreover, it is very possible that the harmful effects of folic acid supplementation in pregnancy are not limited to ASD and ADHD. Over the same time scale as the emerging ASD/ADHD epidemic, there has also been a growing asthma epidemic affecting children more than adults, and there is evidence for maternal folic acid supplementation as a cause (PMID: 19880541) (PMID: 19052032). The GABA(A) receptor has recently been shown to exist in airway epithelial cells and GABA(A) agonists have proved effective in relieving airway constriction (PMID: 19213928) (PMID: 18408071), suggesting that GABA(A) receptor hypofunction may be a cause of asthma, as well as ASD. Folic acid supplementation may also be a contributory cause of the recent increasing incidences of type 1 diabetes and childhood obesity. Antibodies to the GABA synthesising enzyme, glutamic acid decarboxylase(GAD), are seen in type 1 diabetes (PMID: 21749442) and GABA has been shown to exert protective and regenerative effects on islet beta cells, reversing type 1 diabetes in severely diabetic mice (PMID: 21709230). GABA(A) receptor activation causes insulin secretion in pancreatic beta cells, suggesting that the proposed mechanism for the pathogenesis of ASD may also be causing type 1 diabetes (PMID: 20413510) .
  6. Allyson

    Allyson *****

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    Australia, Melbourne
    Frickly b 12 injections give me that feeling when i first have them - i might try having them sub cut now if that gives slower delivery to avoid this; then B 12 improved my quality of sleep drastically for some reaonand -combined with regular creatine - and l-carnitine and magnesium [that i was already taking] I often get a fairly good and some times a great night's sleep - usually corrrelates with the few days or weeks after the b 12 injection it seems to me though creatine also definitely helps my sleep A LOT.
    i don t rea;;y notice much increase in energy from b 12 injections and sublingual b 12 had no effect whatsoever that i could tell.
    Ally
  7. Pegasus

    Pegasus

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    hello everyone,im confused about something,why in the simplified protocol,the b12 is hydroxocobalamin and in fredds protocol is methylcobalamin?
    whats the advantages are in each one? i guess if you use methylcobalamin only,you´re bypassing the b12 to methylb12 thing?
    On the other hand,Yasko seems to mix all forms of b12...
    this methylation business makes my head hurt :ill:
  8. richvank

    richvank Senior Member

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    Hi, Peg.

    Sorry it makes your head hurt.

    Ultimately, to lift the partial methylation block in ME/CFS, your cells need methyl B12. Normally, they make their own from whatever type of B12 comes in with the diet. They also make some adenosyl B12 for their mitochondria to use.

    Dr. Yasko prefers to characterize certain genetic polymorphisms in a person, and base the form of B12 she recommends for them on which ones they have, in particular COMT and VDR Taq polymorphisms.

    I suggested the simplified protocol in an effort to come up with something cheaper and simpler that would help most people who have ME/CFS. As you noted, I recommend trying hydroxo B12 first. The advantage of using hydroxo B12 is that it allows the cells to stay in control of the rate of the methylation cycle, as they normally are. If that doesn't help after a couple of months, I suggest switching to methyl B12. If a person runs the Health Diagnostics methylation pathways panel and the results show that their SAMe or glutathione or both are quite low, then I suggest starting with methyl B12, because SAMe and glutathione are needed by the cells to do the conversion to methyl B12.

    Freddd's own case is somewhat unusual, in my opinion, and he bases his recommendations to a large degree on his own experience. From what he has reported, I think he has a mutation in what is called the CblC complementation group. His cells are not able to convert various forms of B12 to appropriate amounts of methyl B12 and adenosyl B12. Therefore, he has to use large dosages of both, which force some to diffuse into his cells, where they can be used without further intracellular processing. I don't think that most PWMEs have this type of mutation. According to the published literature, it is pretty rare.

    One good thing about Freddd's approach is that it will help people who have a whole variety of B12-related problems, because it bypasses the normal absrorption, transport, and processing of B12 that the body carries out. So his treatment will work in people who have problems in any part of this.

    One downside to Freddd's protocol is that large dosages of methyl B12 and methylfolate taken together can overdrive the methylation cycle and prevent glutathione from coming up. His protocol basically takes control of the methylation cycle rate away from the cells.

    So there are different rationales behind these differing protocols, and pros and cons with each of them. But they all have the capability to help people.

    Best regards,

    Rich
    Lotus97 likes this.
  9. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    I would like to report some good news after 2 months of trial and error.

    In the beginning it was very difficult to find the right start up dosage. First my limbs were like paralysed, then had Parkinson-like tremors for days. As if I could not stand the dibencozide at all. L-Carnitine made my psychotic. It took me two months to figure out what to do.
    My husband and kids did not understand a thing anymore.

    After a few emails with Freddd it became clear I had to start up very slowly with the methyl B12, about 1/10.
    So I did, every three days. When I felt confident, I went to every two days and slowly increasing the dose (1/8, 1/6, ...) together with 400mg folic acid.

    At this moment I take 1/2 = 2500 mcg methyl B12 (Jarrow Formulas) let's say daily, that's half a tablet as well as 1 tablet of methyl B12 (EnzymaticTherapy 1000 mcg) together with 800 mg of folic acid.

    The dibencozide is for a second phase. When I'm at full speed with methyl B12, I will add the dibencozide.

    I discovered recently that L-carnitine is contra-indicated when you take thyroid medication. I did not take anything but it gave me a hint to have a closer look at it. That's the reason why I started taking nascent iodine (6 drops on an empty stomach) and raw thyroid now and it seems to be an excellent choice. I've never felt better in years. My eyes look bright again. Last week I did not take a single nap during daytime for the first time since 2003 (bedridden since 2008).

    My brainfog is not gone yet, too early to expect miracles :) I'm still unable to count or do logical thinking, write a lot of mistakes. A neurologist confirmed damage to my vestibular last week as well. The tingling in my hands are however much better, my feet as well. The pain is slowly fading away in my muscles. I guess I need to add a good vitamine C to rebuild the cartilage in my joints again. Last scan showed major spondyloartritis-like errosion in all my joints except my knees. Tendinitis is confirmed in major muscles because of calcium deposit in tissue instead of bones. I haven't figured out how to reverse that.

    If you want to know how my protocol looks like right now, you can find it:
    http://forums.phoenixrising.me/inde...ic-acids-and-sulphur-metabolites.16084/page-3
  10. Lynn_M

    Lynn_M Senior Member

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    Western Nebraska
    Tara, I'm so glad Rich gave you his interpretation of your results. I was surprised you were so dismissive of your test results indicating anything, because you were out of range or nearly out of range on a number of items. Not what I would think of as a normal methylation panel.

    I hope you feel more confident now that following a methylation protocol will be of benefit to you and you can find your pathway to better health.
  11. Christmas

    Christmas

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    Hi I am in the UK and I have Pernicious Anemia and an underactive thryoid. I have been having Hydroxo injections every week but I am still suffering with no energy - really bad breathlessness and a few nuerological symptoms. I have stopped my injections about three weeks ago - breathlessness is getting worse and slowly i am getting pains and definitely no energy. Would you recommend the Methyl injections or the start up regiume that Fredd recommends. Will I be able to obsorb the tablets i.e. Jarrow B-Right and methylb12 with P.A. I am new to all this world and am really confused. Do not want to get worse and definitely want to feel better.
  12. Christmas

    Christmas

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    HI it is me again. Also my daughter who is only 19 years - has suddenly become so fatigued she cannot stop out of bed for more than a few hours. She was a very energetic teenager last year but now she is tearful, cross and scared all within seconds. She complains about her arm feeling numb or dangling. She gets pains in her ribs and random pains around her body. Her eyes feel strained alot. Any ideas - blood tests resulting in top of the range B12!! I am very vey worried about her. Doctor says blood tests are normal. I am desperate for some help for her - she has had to pack in her job because she is so very tired. She has lost her social life and her boyfriend because she does nothing but sleep. She has lost interest in food as well and eats to live not the other way round. Help me please.....
  13. Crux

    Crux Senior Member

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    USA
    Hi Christmas;

    From what I've learned about Pernicious Anemia, people with this condition often have folate deficiency and iron deficiency along with B12 deficiency. So it's possible that some of the breathlessness may also be from iron deficiency.

    I've also learned that PA does run in families, and your daughter's symptoms do seem to fit. Oftentimes a serum B12 test can be inconclusive of a deficiency. A blood test for antibodies to Intrinsic Factor, and Parietal Cells may help with diagnosis, but sometimes they may be inconclusive. ( It's probably worth a try.)

    Some people with PA, or some type of B12 deficiency find they respond only to injections. Some find they need more frequent injections than others.

    I know that Freddd strongly feels that methylcobalamin is the most effective form of B12, and it is the type that I use; but I also know that many people respond well to hydroxy, even people with PA. Maybe you could trial some methyl-B12 , either as injections, or in addition to your hydroxy injections. ( by trialing sublinguals)

    I think that adding folate may help at least some of the fatigue, as it is supportive of B12 metabolism. If iron and ferritin levels are low, a good supplement may also help with fatigue and breathlessness.

    The amount of folate an individual needs is hard to determine without trying it on oneself. The Pernicious Anaemia Society usually recommends upwards of 5mgs. of folate daily to its members. But that's a very high dosage, and many people need less. ( Some individuals need more too.)

    I suggest starting with a lower dosage, then increasing slowly to avoid side effects. Say, between 400-800 mcg. daily. ( I take methylfolate, because I respond better to it. It really helps fatigue.)
  14. AFCFS

    AFCFS Senior Member

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    NC
    Interesting posts. I have recently - over the last few months - been seeing a pdoc to see if I might be a candidate for TMS (Transcranial Magnetic Stimulation). It is supposed to help the mood element, and there has been been some difference of opinion with doctors I have seen of the "nature of my CFS" - depression, adrenal fatigue, pituitary issues, metabolic issues, etc. Anyway, the TMS pdoc looked at my B-12 level (VIT B12, SERUM - 476 - range 211-946 pg/ml) and said that it was in range but nothing to brag about. He also stated that if doing the TMS that "it would be good to have as many balls rolling in the right direction as possible" and it would not hurt to boost the B12, with that in mind. He advised the Vitamin B-12 Mythylcohalamin 5,000 mcg. He said that he had taken it himself and it got his levels up over 1000. He seemed rather proud of that and that he had found something that actually worked. I had mentioned that another pdoc had told me to use the sub-lingual B-Complex because of the absorption issues. The TMS pdoc said something to the effect that at 5,000 mcg you are negating that and just pushing it into the system. Additionally, he said that the sub-lingual would be fine to maintain what I had, but would not give me the boost needed. So, have been on the Vitamin B-12 Mythylcohalamin 5,000 mcg for about a month now and I also take a squirt of the sub-lingual B Complex in the PM as it has some other Bs in there that are supposed to help out with the L-Tryptophan I take at night and supposedly work better in tandem. In addition, I take an ATP Cofactor in the AM and typically about 3, 100 mg of B-2 throughout the day. Will see what happens. But with the B-12, I figure I am getting about 100,000 % of the RDA as input. I also ran this by my Integrative Internist (an MD) and he was fine with it. I also take a host of other supplements and would not advise anyone to just go it alone - best to have informed medical guidance.
  15. Tammy

    Tammy Senior Member

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    New Mexico
    What tests has she had?
  16. bertiedog

    bertiedog Senior Member

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    I wanted to post about the success I am having with methylB12 but I have not had this success with any of the sublingual MB12 but instead it is with daily injections around 0.20 ml, though I did do double that dose for the 1st month. I am now at the end of my 2nd month of doing this and recently there has been a big improvement in the following areas -

    muscles stronger and far less pain
    have lost the huge painful knots I have had for years in my shoulders and neck that were resistant to every treatment I tried, including osteopathy, painkillers, acupunture and massage
    a real big one for me is that this past week I have been able to drop down 2.5 mg off my steroid regime because of virtual adrenal insufficiency. I am now taking 6mg Prednisolone daily.
    there is no change in my need for thyroid medication
    I have much better physical energy and am walking daily, some days I can walk my dog both morning and afternoon

    I find that I am needing a bit more sleep at night, around 8 hours but that might be because I am doing so much more physically.

    Its pretty certain I have an MTHFR defect because I had a stillborn baby way back in 1975 that had a neural tube defect. What I don't fully understand is why I cannot tolerate the sublinguals. The Jarrow one gives me daily horrible migraines but I don't get these in the same way using the injections.

    I also take 3 Thorne Basic Nutrients daily and lots of other supplements so I also get around 400 mcg active folates and have been taking this since 2007 every day.

    Does anybody have any idea why it might be that I only get a good effect from the injections?

    (This is where I so miss Rich and not sure if Fredd is still around)

    Thanks
    Pam
  17. Crux

    Crux Senior Member

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    USA
    Hi Bertiedog;
    It's great news that you're having so many improvements with MB12 injections! Some people only respond to them.
    Some people do have trouble with the additives in the sublinguals.
    Usually, it's GI trouble from the sweeteners: xylitol, sorbitol, and mannitol. But, from reading some anecdotal reports around the internet, many people have had headaches from using xylitol as a sweetener.
    Some have sensitivities to citric acid and magnesium stearate, but I haven't read of headache being a symptom. (It would still be a good idea to observe these substances anyway.)

    Zylitol has some mild diuretic properties, so it may cause headaches that way. There is a small possibility that it would lower blood sugar. ( It is toxic to dogs, and has been shown to substantially alter their blood sugar.)
    Most people won't have trouble with it, but since you have, it may be a good idea to check for this.

    You may want to see if increasing methylfolate helps with any remaining fatigue. It supports B12 metabolism.
  18. topghetto

    topghetto

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    London
    Hi All,

    I want to start the simplified protocol created by Dr Rich Van K but, I have some questions about the following supplements that I purchased...

    Jarrow's Methyl-B12 5000mcg,
    Solgar's MetaFolin 400mcg,
    Folinic Acid 800mcg (I will cut 1/4 of the tablet so do not worry about that),
    Lecithin Granules,

    Do I also need to purchase the Neurological Health Formula? If possible, I would rather not due to expenses :(

    Farouk.
  19. Rand56

    Rand56 Senior Member

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    Myrtle Beach, SC
    hi Farouk

    You might want to reconsider using Jarrow as your brand on the B-12. Many people feel it is not as effective as it once was. You might want to read another thread in this methylation section titled "Jarrow did it change??"

    Rand
  20. topghetto

    topghetto

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    London
    Hi Rand,

    It's a bit too late for me to reconsider because the jarrow methyl-B12 arrived a couple days ago. If you do not mind, could you please supply a link to the thread you mentioned. It would be much appreciated.

    Farouk

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