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Hydroxo - depression as a side effect?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by opus88, Nov 22, 2013.

  1. opus88

    opus88

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    Please – I need a quick answer! I am homozygous C677T. (No further testing has yet been done.) I could not take the compounded methylB12/folate injections that worked for my doctor’s other patients. She said I’m the first to not respond well to that, so she was puzzled. We then tried the sublingual Active B12/Folate from ProThera. Again, it made me worse.

    After a few months of doing nothing, my doctor called a couple of days ago to tell me she ordered compounded hydroxo injections, and I have them in my freezer right now. But I have read recently that it can bring on depression – something I already struggle with – if nitric oxide levels are already low. Beacuse I already have terrible fatigue (mental and physical), brain fog, weakness, lethargy, irritability and more, I’m scared to try these new injections! I also saw somewhere that Vit C should be avoided – but the only thing (and very recently discovered) that has helped my chronic fatigue has been Dr. Wilson’s Super Adrenal Stress Formula, which is loaded with Vit C! ( I just can't stop the one thing that seems to be helping.)

    My questions are:
    1) If I react negatively to the hydroxo injection, what is the quick fix? I know niacin helps pull you out of the trouble from methylcobalamin, but what will pull someone out of a depression reaction to the hydroxocobalamin?

    2) Will I counteract the injection by taking the adrenal supplement with high Vit C?
     
  2. Freddd

    Freddd Senior Member

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    Hi Opus88,

    I can tell by your statements and questions that you don't understand what is happening with b12 and or folate. So how about your describing exactly what happened, you know nausea or burning pain or asthma or itching or spasms or moods or whatever happened in exact detail. Then we can work on understanding what occurred.
     
  3. brenda

    brenda Senior Member

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    Hi Opus88

    Many of us on here have bad reactions to methylb12 and have to take hydroxy but need to start at a low dose and build up to avoid mood swings. I would get an oral hydroxy and build up. Freddd and some others had different problems with methylb12 and Freddd even says he had a quick improvement but he won't get his genes tested by 23and me so that we can work out why he reacted as he did.

    @Freddd I would gladly donate $6 to the Get The Damn Test Done Freddd Fund
     
    Last edited: Nov 25, 2013
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  4. opus88

    opus88

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    Thank you both for taking time to reply! When I took the methyl injection and later the sublingual, I had an initial surge of energy and mood, but after just a few days I plummeted. My fatigue, weakness, brain fog and mood worsened to the point of making me housebound, almost bedridden. It was a few months ago, so I don't remember any other specifics.

    Could I use just half of the injection dose of the hydroxo? The problem is that they are already drawn into individual syringes, and the expiration date only allows for about 10 days delay on starting them. It may be my miracle, but since I'm already depressive I fear that this will send me into a downward spiral - something I cannot have especially heading into the holidays.
     
  5. Freddd

    Freddd Senior Member

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    Hi Brenda.

    I've talked to lots and lots of people in all this. Once again, this summer I worked with the half a dozen CFS.FMS suffering folk where I was staying. Fortunately every one of them had a "good" experience even though two of them told me they were going to have a "bad" experience" on MeCbl. Basically there was a semantic misunderstanding that lead to all sorts of misery. I have seen that in numbers beyond easy counting. So please, in describe in detail what you mean my "bad".

    In person I have NEVER seen any of these mysterious problems. What I have seen is lots of donut hole folate insufficiency, low potassium, too much B1, too much b2, too much b3, glutathione, NAC and a bunch of other things. I have also seen plenty of limbic system damage with certain characteristic and responses. to specific nutrients. But you now, after working though as many a dozen different things in the way, most do come around to have a healing response. The problem is recognizing it. You mention mood swings as need to avoid. I had intense mood swings during several 9 month healing periods. The deficiencies cause nerve damage, mood disorders, personality disorders and all sorts of effects of every description. As one heals the symptoms often run through backwards or a mishmash of what was already experienced over years and decades getting worse. I have experienced a whole series of symptoms., neurological and neuropsychological, run through backwards with some precision, but 50 times faster than while getting worse. I mapped these responses out in me and others present personally while recovering. I've mapped the responses of people remotely.

    Now CFS/FMS (and presumably ME) have a very clear characteristic together, they both have low cerebral spinal fluid levels of cobalamin. People who have low CNS levels of cobalamin have neuropsychological, mood and personality disorders of various sorts, often many. They also have pain disorders originating in the brain. When MeCbl and AdoCbl get into the brain (in a very restricted fashion in CFS/FMS) they cause a noticeable response and healing takes months. and months. A new round of healing each time you hit a bingo for a substance that aids the process. Much of the healing experience is unpleasant.

    Simply calling some "bad" doesn't mean it is damaging and doesn't exclude it from being favorable to healing. Neurological healing can be desperately painful or unpleasant in any number of ways.


    So the answers I need are the following. In fact there are answers every one of us likely could benefit from to be found from these questions.

    1. What SNPs point put why it is difficult for US (with CFS/FMS) to gain and retain b12s in the cerebral spinal fluid which contributes to damage ion the first place and difficult healing?
    2. What SNPs point out lack of ability to convert vegetable folates to l--methylfolate
    3. What SNPs point out lack of ability to convert folinic acid to l--methylfolate
    4. What SNPs point out lack of ability to convert folic acid to l--methylfolate
    5. What SNPs point put why most of us who have tested that far find that LCF works tremendously better than ALCAR, or vice versa.
    6. What SNPs point put why HyCbl is 100 to 10,000 times more potent for some people than others making it the operational equivalent to a combination of AdoCbl and MeCbl. (without that HyCbl only slows down dying as it leaves almost all the b12 deficiency symptoms untouched and makes many worse)
    Something that can be done by people right here at this forum to break important new ground. There are probably some hundreds of people here that have their gene tests and also have some degree of paradoxical folate deficiency. So there are at least 3 recognizable levels of paradoxical folate deficiency/insufficiency (discernible by symptoms) as well as a fully functioning folate metabolism that is happy with all forms of folate. So when all those people with the SNPs can correlate them with their symptoms (correlation is not causality, but they can sure give hints sometimes) and need for folates, if the SNPs are useful they ought to be able to do as well as symptoms in pointing out who will have what kinds of reactions to various folates.

    I am willing to work quite hard matching up my symptoms to those of others in the same combinations, i.e. partial methylation block, methyltrap and partial ATP block, each for of body and CNS. These also line up to specific nutrient combinations needed to heal them Then when people take the MeCbl, AdoCbl, l-methylfolate and LCF, the responses are highly predictable. However while the predictable responses to the items deficient occur, what is not predictable is how the people will interpret them, to run from them or to work out the bugs, for them to be "bad side effects" or "great flags of healing". In the majority of cases I have observed in person, those who have the expected responses generally can bring things into balance but it can take a lot of work. As only about half of the pathways are mapped out, the other half are still marked "edge of the world. here there be dragons". In the 50 years of inactive B12 and folic acid research, all those who had healing actually start up with vigor were kicked out of the studies (dangerous side effects, low potassium generally) as the studies did not have provision for adding potassium as needed. It's a shame to see that so little has been learned about how to heal with MeCbl, AdoCbl and L-methylfolate in the last 60 years.

    We collectively here amounted to the 5% that fell outside the 95% medicine (at best) being practiced. Even when expanded to maximum detail, there are plenty of people here who don't respond as predicted where there are still plenty of not understood holes in the models used.


    So far, I have mapped, with lots of help here, symptoms to nutrients, responses to nutrients, responses to symptoms. The only thing not done is mapping SNPs to symptoms, SNPs to actual results (not hypothetical results) with various nutrients and SNPs to healing. So far SNPs only appear to be tied to hypothetical nutrients. Let's see the mapping to some bodies full range of symptoms, then take the mapped nutrients, if different from the hypothetical nutrients and see if the predicted responses happen. I've spent more than 25,000 hours working out a reasonably predictable system. The problem is that most of the researchers of SNPs have grown up on b12 and folate mythology and many of them know so distressingly little about how b12 actually works in practice that they say lots of things that are inherently nonsensical because those things were assumed 50 years ago and NEVER validated. Modern studies on CyCbl and folic acid complain that they are "disappointing" and a "conundrum" because they don't work the way they are "supposed to". There is no predictable system.

    We have enough people here with the SNPs and symptoms. Let's see if collections of SNPs can be connected with paradoxical folate deficiencies in several varieties, anything that miraculously gives HyCbl the power to replace AdoCbl and MeCbl 100% (of course there would have to be people actually healing to demonstrate that). Where do the demonstrable carnitine differences come in. What SNPs are associated with HyCbl not being dependent upon the deadlock quartet for it's conversion to a usable form, if any. Any one of these would be useful. And of course, what is the SNPs that allow the differentiation between the "Parkinson's" direction (brain problems from low AdoCbl/LFC) versus the "MS" direction (low MeCbl/mfolate brain/cord problems) .

    Or pick any set of symptoms and SNPs that reliably predict the symptoms and nutrient responses that are already matched up. I just want to see that there is anything at all to this. All sorts of intellectual murmurings in my brain suggest there ought to be something there however so far I "I don't get no satisfaction" and maybe that's just because "You can't always get what you want".

    If the SNPs at the current level of knowledge are any use it would be good to know what it is. They would have to map to and come out with some of the answers we already know in some of these situations. So far it looks like an occasional hit and a lot of strikeouts. The degree of incorrect answers so far gotten might be far more indicative of something wrong with the hypothesis or how it is applied than as a guide to achieving healing.

    So let's assume I get my 23andme test and according to it, everything I have done to heal is "wrong" according it's results. Is this a genuine intellectual risk you are willingly taking in order to genuinely understand better, a risk that you will see that the current analysis is completely wrong and useless. You see I have no intellectual risk here. My healing is not at risk. If 23andme can be interpreted to get me the last 10% of the way and heal these damages, I can certainly accept that without any fundamental changes to my system, just a few additions However, if 23andme results says I'm doing it all wrong, then it's interpretation is all wrong and it is counter productive and perhaps even has incorrect and damaging advice about HyCbl and folates. There is NOTHING 23andme can come up with that can throw out my own and others healing. If it comes up and gives me the Deadlock Quartet in the relative quantities that are effective for me as the suggested therapies, or something that can get to that, I will be amazed. And as far as I know, the very first one. It's nice knowing the answers in advance. That gives me a top rate BS detector. And so far, applied in retrospect, discussed 3rd person, I have not found any practitioners retrospectively in the last 10 years either who would have gotten it right and healed me. They also all have reasons why what I did shouldn't have worked according to their hypotheses.

    My healing was because I solved the problem, my way, all the way from detection via symptoms to cure. I developed a system. First I did the systems analysis; then I looked for what filled in the black boxes. I hit something like 10 home runs in a row before trying glutathione. Glutathione was the only item that only scored 2 of 3 of my usual criteria for a trial. Everything else scored 3 of 3. Then I got well. I refined the working hypothesis. Each item that was correct was one more confirmation that I was on the right pathway. Even the glutathione that was a personal disaster for me healing wise, helped solve the problem. I tried the glutathione because of so many people's theories and high hopes. I had hoped that at least one of them might be right. I needed an unexpected "home run" to heal all this persistent neurological damage. Nine other people were equally convinced and willing to put their bodies on the line. This really is a life and death matter. When I saw the damage being done I let everybody else know and they were seeing it too, just not yet recognizing it. Ethics required us to cease immediately and set about reversing the damage as quickly as possible. As we had a hypothesis as to why it happened we also had a hypothesis to reverse it but that took several months to develop. And it mostly worked. It probably would have worked better had we known how to reverse it immediately. It's just that 100% of the other people using glutathione got it all wrong. We are not just playing for intellectual points in the air. I've seen people get scared to death over a 1:100,000 chance of a serious vaccine side effect. Here we have something with a perhaps 20% chance of brain damage and people go merrily on their way advising other people to take it. I guess I just don't tell the stories with enough scare factor.

    So Brenda, are you making a real offer of potential intellectual change including that the interpretation used of 23andme could be in essence mostly wrong compared to real world results?. If the understanding of those SNPs is based on the 50 years of study of HyCbl and folic acid it can't help but be wrong and counterproductive. If I can be shown even one set of SNPs in one person that predicts HyCbl to be able to yield the full range of healing expected from AdoCbl and MeCbl by them demonstrating SUCH I will be surprised and will agree that it is not impossible. If I see a whole lot of it, then it isn't improbable. If the suggested items from the test end up correcting partial methylation block, methyltrap and partial ATP, in effect, correcting the underlying problems yielding the symptoms of ME/FMS/CFS, then I would agree that the interpretations are correct enough. So far no joy on that.

    What is it that you would you expect a 23andme test to show for me and what would you expect it mean? Surely you have a hypothesis to put at risk in all this. What is your hypothesis about what the test "should show" for it to verify my demonstrably effective therapy? And if it says something else what does that mean? What changes in belief system or hypothesis or interpretation are needed to include it or explain it away. Convince me that there is some payoff, a change in understanding at risk, even simply a lunch bet at stake.


    he won't get his genes tested by 23and me so that we can work out why he reacted as he did.

    If there is a working system here, knowing in more detail about me and what nutrients worked for which symptoms and how and cofactors than you have ever known about anybody else, it's all there in what I have written.


    so that we can work out why he reacted as he did

    So there is right in front our faces. Work out what my SNP profile HAS TO LOOK LIKE, at least in relevant sections, because I did react as I did. Instead of predicting which item should be used, go from what item is successful and what predicts it to be so in the SNPs. Then we will look at my SNPs.

    If one can't follow the system back and forth, up and down, to and fro, in both directions, there isn't a system. For the folate related genes, mine ought to be either very common or very rare. So come up with a prediction of at least what ought to be present and what ought not be present in various areas. What SNPs predict that AdoCbl/MeCbl are 100 to 10,000 times more effective than HyCbl ("radically" more effective as Wheatly put it).
     
  6. caledonia

    caledonia

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    There are many different reasons for reacting adversely to B12 and/or folate. Some reasons might be because of your SNPs, some are for functional reasons. Or you plain just don't tolerate hydroxycobalamin.

    I actually found out recently that I fall into that category. By my SNPs, I should be taking hydroxy, methyl and adenosyl, with less methyl. I tried hydroxy and had an adverse reaction, which was kind of an icky revved up feeling. I also wasn't getting the benefits from it that I do from methyl. So I discontinued, and was able to use the nicotinic acid to calm things down.

    This is why you should Start Low and Go Slow...

    If @Valentijn or someone wanted to find out what SNPs control conversion of hydroxy to methyl, I would be happy to post what my SNPs are to see if something genetic is going on.

    In theory, you should be able to do self muscle testing to see if a supp is good or bad for you to take before you take it, but for some reason, I have a lot of trouble muscle testing for B12. I think this is because the adverse effects might be something downstream that takes place several days later, instead of right away. Others might have better luck, though, so I wouldn't rule out trying it.
     
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  7. opus88

    opus88

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    Caledonia - Thank you for your response! Am I understanding correctly that, should I have a depression reaction to the hydroxy injection, I can take nicotinic acid as an "antidote" of sorts? How much would I need to take, and does it clear it in a matter of minutes, hours or days?

    I try to muscle test for all of my supplements daily, but evidently my body is so screwed up that I cannot get consistent answers - not just for supplements, but even when checking obvious things (eye color, name, etc.). Oh, how I wish I could be successful with that!
     
  8. Valentijn

    Valentijn Activity Level: 3

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    MTRR (methionine synthase reductase) is basically the gene which converts cobalamin into methylcobalamin. MethylB12 is only used in the methylation cycle (methionine production), hence MTRR is the only gene involved in that transformation.

    MethylB12 supplementation isn't needed specifically, so long as there are already sufficient methyl groups available. Hence even though I have MTRR A66G +/+, and need to produce 3-4x as much MTRR to do the same job, I don't need the extra methyl groups (possibly) due to having the slow versions of other genes which use methyl groups.

    At any rate, I get no additional benefit from large doses of methylB12 (I get a small dose in a B-complex), and I do tend to feel worse when taking large doses of it. I do, however, need to make sure I have sufficient B12 available, especially since greater amounts (should) speed up MTRR so that I can (hopefully) make enough of it to compensate for my version of it being so inefficient. Someone doing this might or might not need the additional methyl groups - I don't, but some people probably do. And some might not tolerate the extra methyl groups to varying degrees.
     
    Last edited: Nov 26, 2013
  9. bertiedog

    bertiedog Senior Member

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    I am one of those who cannot tolerate hardly any extra methyl supplements whether it be MB12 or methylfolate apart from 250 mcg methylfolate and 250 mcg calcium folinate but I do eat a large green salad every day and also have things like broccoli and cauliflower virtually ever day in addition to lots of peanuts daily so that might be another reason why I don't need anymore methyl groups because I am getting a lot of folate daily from my food.

    For me the adverse symptoms are overstimulation of my nervous system where I get very angry, short tempered, moody and also the most severe migraines that are so severe one could feel like ending it all. Also I cannot sleep when like this. It has happened every time I have tried to take more methyl supplements since I first started in 2007. I think I now have found the answer.

    According to Amy Yasko folate can convert to glutamate which should be in balance to GABA which is a calming neurotransmitter. Excess glutamate can cause all of these symptoms. I don't know about depression as a symptom but it wouldn't surprise me if it was a problem but I would have to go through my notes.

    Ben Lynch who has seen hundreds of patients regarding methylation also warns of this and describes it as overmethylation and it is a very bad thing. He even goes so far as to say not to take supplements every day. If you start to feel better he recommends you don't take supplements for methylation for a few days to see how you feel. If you start feeling bad then you take the supplements again. What I like about Ben's approach is that he says he is still learning and I think Amy Yasko is similar as was of course the much missed Rich.

    For me I have done well with a transdermal spray which says Cynacobalamin but I am not happy to be using this long term so have ordered some hydroxyB12 and AdnB12 which should be here any day.

    So I would say listen to your body and it will tell you what is good for you but always go slow and low. For me I have at last accepted that I just don't need anymore methyl groups and if I were to have my genetics tested I might well find the answer as to why this is.

    Good luck.

    Pam
     
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  10. opus88

    opus88

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    Thank you, Pam! I will be interested to know how the new stuff works for you. I have been trying to follow Dr. Ben, but my brain fog is so horrible that I just can't learn or remember simple stuff, much less this extremely complicated stuff. It's so incredibly frustrating - I used to be smart and organized and driven, but now I can't even complete a task. I've already lost one job because of it, and I'm afraid I'm going to lose my current one for the same reason. I've become severely ADD and incredibly impatient and so very easily overwhelmed. It really stinks.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    What dose of hydrox is in the syringes? I wouldn't personally want to inject half a syringe and inject the other half later (due to possible contamination), but if you are careful, you can transfer half the contents to a new syringe.

    Sushi
     
  12. Adster

    Adster Senior Member

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    I've reused b12 syringes up to 3 times when doing subcutaneous injections with no problems. I cleaned the area first with hydrogen peroxide. Still, I don't think it is recommended.

    Could you use it sublingually?
     
  13. caledonia

    caledonia

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    Since it depends on the electromagnetic field generated by your nervous system, you need to be hydrated, and also have enough electrolytes. So basically that means drink a glass of water and take some magnesium, sodium, potassium etc. or whatever you might need. It's very common for us to be low in electrolytes due to weak adrenals.

    I do a homemade electrolyte drink with magnesium glycinate powder, vitamin C with ribose and salt dissolved in a cup of water, four times a day. Ben Lynch has a similar recipe called MTHFRade.
     
  14. caledonia

    caledonia

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    I'm MTRR +/-. This is a fairly common SNP. So if this is the case, it means there are many more of us who could potentially have problems with hydroxycobalamin than you would think. I'm surprised that Yasko has not picked up on this...

    I don't need large amounts of methyl groups so far, but I do need some - 50mcg or less of B12 and folate are plenty for right now.
     
  15. caledonia

    caledonia

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    Hi opus88, since I'm not the originator of this thread, to get my attention put an @ in front of my username like this @caledonia.

    Anyway, yes, try 50-100mg of slow release (non flush) nicotinic acid. NOW is a good brand. Note that this is much less than a whole pill. It's 1/5 to 1/6 of one 500mg pill. It works the best for me taking it every four hours. Ben Lynch has also mentioned taking it every half hour or hour. It may take several days to get methylation to stop cranking, it just depends. I've done everyone from one dose to about a week and a half of doses.

    But in general, you should feel some relief right away, like in 15-20 minutes.
     
  16. Lynn_M

    Lynn_M Senior Member

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    Opus88,

    Regarding your Vitamin C question. I've read on another forum, and maybe also at MTHFR.net, that you shouldn't take B12 within 30-45 minutes of taking Vitamin C, because the Vit C will inactivate the B12, but I can't remember why the Vit C will inactivate the B12. I imagine this applies only to oral or sublingual B12, not injections.

    Other than that time limitation, I know of no reason to not take Vit C if taking Vit B12.
     
  17. brenda

    brenda Senior Member

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    @Freddd

    I can barely read your post, it is way beyond me to plough through all of that. I was half joking anyway. The test would have been for our benefit not yours. Your protocol has proven dangerous for some of us because of the release of heavy metals. I get the same symptoms that I get when I eat cilantro.

    I have to wonder whether you really understand just how sick some of us are.
     
    Last edited: Nov 28, 2013
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  18. Freddd

    Freddd Senior Member

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    Hi Brenda,

    I do understand how sick you and many others here are. I used to be like that too. I started my escape almost 11 years ago, but am still rooting for everybody. So, because you are working on a different theory, you think that nothing works the same? I went through every theory in the book and many that weren't back in the 80s and 90s. They didn't work for me. They didn't work for anybody I ever came across.

    The people that kept depending upon them are generally still sick if they are alive. I know personally one person besides myself that had FMS and is recovered. He believes that the Mormon priesthood blessing he received healed him. He is better and returned to work. I can't disagree. That makes it the second most effective method I have seen, with proven success like that. Unfortunately, nobody else I am aware of has been able to duplicate his results. If you like it can be arranged for the missionaries to come visit.

    I had to go against about every theory, mainstream and alternative, because as it turned out all of them had at their basis, the same wrong understandings. Paradoxical folate deficiency/insufficiency happens considerably to people for all sorts of reasons including some of the other vitamins they may take. It can happen with a large assortment different circumstances because it has more than one cause. A person doesn't have to believe it since they can try. I, like many here, have a very screwed up folate metabolism.

    Your protocol has proven dangerous for some of us because of the release of heavy metals

    That is certainly a nice neat package to wrap yourself in. Explains everything. A nice coat of armor to keep out any ideas. Recognizing the symptoms of low potassium or low folate can happen no matter what else is working or not working. A person can have deficiencies of many varieties whether they have something else or not. We are not dealing with an EXCLUSIVE OR here. That is part of the extreme complications of this whole business. It isn't simple and hundreds of things are going wrong at once.
     
    Last edited by a moderator: Nov 28, 2013
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  19. opus88

    opus88

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    @caledonia - Thank you for the @ tip! And for the information. Nicotinic acid is just niacin, right? So the niacin works as an antidote for negative reactions from either methyl or hydroxo versions, even though the reactions may be different? That makes it easier, as I already have niacin here.
     
  20. opus88

    opus88

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    @Lynn_M - Thank you for clarifying the Vit C and time frame. That makes sense and it's helpful to know.
     

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