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My recent results.
B12 >1000 B1 99 B6 69.6 Folic Acid 19.4 Vitamin D-OH D3 39.4 Vitamin D-OH D2 <1.0 I'm surprised about the Vit. D, since I've been using 5,000 mg tablet size supplement. |
D3 has a short half life. It gets used up pretty quickly.
People also vary in their storage of it, some need more to keep a higher blood level than others. I also tested at 43 when using 5,000 IU daily. |
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That's an excellent way of getting iron into your body without any overload from supplements. Just a suggestion. Melody |
Vitamin B12 and Magnesium Results
Dear Mrs.D,
I got my Vitamin B12 and Magnesium results today: 1. Vitamin B12 - >1999 (211 - 946) High 2. Magnesium - 2.1 (1.6 - 2.6) I remember you also had 1999 result in one of your posts. With this number, how much of Vitb12 can be used as maintenance and how often? It appears that my magnesium number is fine. Should I continue my soaking and lotion? Thank you, always:hug: |
Yes, continue the magnesium.
You can do the B12 now if you have 5mg left, twice a week. Or 1mg daily. I wouldn't stop it, entirely. |
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MrsD: I am worried about ALS. Can vitamin B12 cause this type of muscle issues?
Hi Mrs D,
I have not posted in a long time. Some things have gotten better, but some things have not, and may have gotten worse. I am about 2.5 months into taking vitamin B12. I stopped injections many weeks ago, and now use your favorite brand, Puritan's Pride, methylb12 5000 mcg once a day. I do let it dissolve under my tongue, but I do it on an empty stomach, and take a good amount of water to flush any residual b12 down that may be stuck in my mouth. Is it still early to see improvements? I have seen some here and there, but I notice some other things still going on, mainly related to my muscles. Over the last few weeks or so, I have been having an increase in muscle twitches all over my body, sometimes even in my tongue it will twitch. They don't hurt, but are very annoying and concerning me. Also, there have been muscle atrophy, especially in my biceps and tricepts area, but other places too. I can tell my feet are a little smaller. Also, my forearms and hands are just skin, the muscle, and bones. I have no body fat anywhere. There has been an increase in weakness in my arms I notice. I went to another neurologist as I did not like the first one I saw on May 8 (the one who wanted me to take amytryptaline and rolled his eyes at my complaining of my symptoms in his office). The new one I saw was very nice and kind. He performed a strength test and sensory test. I gave him a long list of my symptoms and he said the list is too long for it to be any one thing. He said he does not think I have a neurological disease, and that I do not have MS and that I do not have ALS. He said he'd tell his own brother this. He said that these issues will get better that it's a pendulum swinging back and that I didn't develop these issues over night. It made me feel good for a couple weeks, till I started feeling my arm muscles get weaker again (they were not as weak when I was in his office that day). My question: could this be related to B12 still? I know that muscles can waste and feel weak, and burn after exertion if you're deficient. But it just seems this is getting worse even though my levels are now high and I'm on treatment. I've read up on adenosylcobalamin (dibencozide) and how it helps promote muscle growth and process protein into muscle, and that if you're deficient in B12 sometimes you need both methyl and adenosyl to repair the damage, that one alone may not be sufficient. I bought some (Country Life 3000mcg) and took one yesterday. I felt it, as I was hot all day, felt a different kind of energy than I felt since my startup reactions on methyl. What do you think? It's hard to not think this is ALS. I have also had moments of difficulty swallowing and breathing. The doc said he thinks I'm just anxious, stressed out, these are causing these symptoms, and that the B12 deficiency matter is a pendulum swinging back to normal. Why, then, would these muscle issues be getting worse? He didn't order EMG, NCV, or MRIs and I took that as a sign that I'm OK, but I really don't know. Could this still be B12? I really hope it is. |
Are you taking other supplements or minerals?
I think you should be eating a good diet with high potassium foods. This might help. Also you may need magnesium. When you are low in this, you can have muscle twitching and even cramping. Estimates are that about 70% of Americans are low in magnesium. Foods high in magnesium are almonds, beans, yogurt, oatmeal. B12 does not fix everything, you know ...;) |
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I have been eating some almonds here and there, also yogurt. I typcially have some oatmeal for breakfast every day. I have magnesium tablets as a supplement, too, but I don't take them as I don't like the drowsiness they give me. I eat a banana at least once a day, sometimes twice, as I'm scared of the possibility for hypokalemia that can happen with b12 repair. I really don't know how I got like this and into this mess. About a year ago I felt relatively fine, now it's all going down the toilet somehow. And I really should trust the doctor, huh? He's the expert. Sees MS and other conditions in patients all day long all the time. If he have even the slightest suspicion, he'd have ordered tests. What is your opinion on trying the dibencozide? I noticed it increased my appetite a little yesterday - more than just mehtyl does (although the appetite has been slowly coming back, even if it is at a snail's pace). Why does B12 repair take so long and go so slowly? Is it because it involves the nervous system primarily, which is a slow system to heal/repair? Thanks again for your knowledge and advice. I'll increase the yogurt, almonds, oatmeal, and bananas (oh and avocados too! high in potassium) and see if it helps at all. |
You can certainly try the dibencozide. It can't hurt.
You can skip the methylB12 on the days you take the other. V8 vegetable juice is also high in potassium. 800mg in 12oz. Cantaloupe has 1400mg in 1/2 melon! |
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I will do that for a while then, see how I feel - alternate days, 5000mcg methylb12 one day, 3000mcg dibencozide the next day, so on and so forth. These are the two active forms of B12 our body uses/needs. No need for cyano or hydrxo (why do these even exist anymore?). Question about methylfolate. Something I need? Every blood test I've had shows very high folate (probably masked my b12 deficiency for so long that I didn't know I had it). If it's high, do you think I'd need methylfolate at all? I see my dibencozide (from Country life) comes with folic acid (not much I don't think), but I know folic acid is different than methylfolate. I no longer take my multivitamin due to the extra b6 and folic acid it has. This is what I currently take: 3 fish oil pills a day (omega 3s) at 1200mg/each pill 2 vitamin D pills a day (as D3) at 2000 IUs each - total of 4000 IUs a day 5000 mcg methylb12 a day will incorporate the dibencozide everyother day and skip the methylb12 on days I take this. Should be good for now. No more multivitamins, unless I could find a good multi that has no Bs in it... not sure I can find that. Any thoughts on niacinamide as a natural anxiolytic? I've read that Valium was actually modeled after niacin as niacin (as niacinamide) has some natural anxiolytic affects. I also read too much niacinamide can cause liver problems, though, so you have to stay below like 2g or something. Thanks! :) |
I think if you improve magnesium, you will be less tense.
Theanine is far better for anxiety I think overall. It also helps PN. If you search it here you will find some discussions. One has a recommendation from Dr. Blaylock's newsletter. There is another product for anxiety that I believe works well, called PharmaGaba. I use it now also... since we had a family emergency here and it really helped me. I bought mine on Amazon.com and use the capsules. The chewable form is more expensive. The blood test for folate does not separate out active methyl and inactive folic acid. If you are not a methylator, and have the MTHFR mutation, you might need the methylfolate. It wouldn't hurt to try 800mcg a day for a short time to see how you react to it. A non-methylator could have folic acid build up in the blood because of the loss of methylation capability. When taking methylfolate, it is best to avoid all folic acid products. |
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When you say it is best to avoid all folic acid products while taking methylfolate, do you think the small amount of folic acid in the Country Life dibencozide would present a problem? It's 200mcg. I'm not even sure why they put that in there? What does folic acid have to do with dibencozide, or B12 in general in that matter? |
There are papers on the net that postulate that folic acid competes with methylfolate at the blood brain barrier.
That is why avoiding folic acid would give a cleaner result in trying the methylfolate at all. There is folic acid in our food you know...in US many food products are fortified with it. |
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It's a shame that brand I have has folic acid in it. But, whatever. I'll continue to take it. I don't think it can hurt. :) Thanks again for all your advice! |
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With my Vit.B12 result, do you think I should still get MMA or hemocystein (not sure of the spelling) tests? Thank you so much:hug: |
@Idiopathic:
The methylB12 would be working, so you don't need MMA test. If you were taking only Cyano...then an MMA test might reveal something. (Cyano needs to be converted to methylB12 in the body and if it weren't, it would show up in tests anyway.) |
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I have worked hard trying to just take methylfolate in lieu of folic acid which appears in many foods and supplements. I found this B complex which works very well for me: Douglas labs B complex with Metafolin http://www.douglaslabs.com/pdf/pds/200765.pdf I take this once a day along with vitamin C, D3 and and gamma E. It provides a suitable dose of methyfolate along with the B vitamins in good forms. I do take additional B12 than what this product has but it does contain methyl B12 (not B12 cobalamin) which is a bonus. |
Not peripheral neuropathy... but...
... numb patch of skin on my left leg. It's on the side of my thigh. I don't know quite how long it's been numb. I'd say at least 4 months, maybe longer. I don't know if it's spreading or not, either.
Question is - can this be from low B12? I've had a host of unusual neuropsychiatric stuff going on with me. The neurologist I saw (the most recent, and the one I liked better of the two I saw) didn't say anything of it, but I did give him a LONG, as he put it "laundry list that could not be any one thing." He was also well aware of my B12 issue and knows how my levels are back up. Also said doesn't think I have a neurological disease. So, it must be B12? Can a deficiency in this vitamin cause numb patches of skin? Will it get better over time, or could it be a permanent patch of "dead nerves"? I realize we aren't doctors. Just wondering if anyone would know or had something similar. I'm thinking it's from the B12... Thank you! :) |
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I do worry about folate sometimes, not as much as I worried about B12 though. My folate always tests high, but as Mrs D says, this doesn't say if the folate in my blood is building up because it's not being utilized properly or what % is methylated folate or folic acid, unable to be methylated. I remember posting a while back about how my homocysteine is low. MrsD remarked that that's a good sign that I'm properly methylating these vitamins. Regarding B supplements in general, I can't really take a B complex. At least not at this point in my life. Coming off antidepressants has left my nervous system in an uproar, and Bs can be super stimulating in general. I had a hard enough time getting on B12 due to the high energy and swinging in the beginning. Also I am concerned about my recent B6 test which was high. As a result I'm not taking any multivitamin, which is a shame because I do like the "insurance" of multivitamins. I wish I could find one that doesn't contain the Bs! That way I could individually take the Bs I want to take and need to take (even though it would be a pain and possibly a lot of pills). This is all I take now: Fish oil pills (3 @ 1200 mg/ea)/ day (for the Omega 3) Vitamin D3 (2 @ 2000 IU/ea)/day (for vitamin D deficiency - yikes!) Vitamin B12 (every other day alternate between 5000mcg methyl and 3000mcg adenosyl/dibencozide w/200mg folic acid) - sublinguals on empty stomach under the tongue then wash down with water. Sometimes I take 1000mg of biotin (B7) every few days or so, as an extra kick for hair/nails and energy I've considered looking into niacinamide (b3) but am gonna leave that on the back burner for now. I know my thiamine (B1) level is "good" (first, not-so-friendly neurologist tested that and I got a phone confirmation that it's in range). Don't know my B2, niacin (B3), B5. B6 was high. B7 (don't know/doesn't matter), Folate is always high, B12 "high" (last tested 1844! - am happy with this, though, thanks to advice of MrsD and others I read on here). These Bs seem hard to regulate! :) |
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I have a recent story about a numb patchy area on my right thigh. I was working on a new raised vegetable garden this Spring and did a lot of heavy lifting, digging, etc. I built it into a hill to get better drainage than my old spot. After 3 days of hard work I was finished. Right about that time I noticed a moderately numb patch of skin on my right thigh. Went to the chiro and he adjusted my sore back. Now about 6 weeks later it is about 30% better. I 'm virtually certain the cause is a compressed nerve. Seems like I have had more compression issues since being diagnosed with PN. Quite often I wake up in the morning with numb fingers due to lying in a certain position for too long. I stand up and it goes away literally in seconds. Patchy numbness is scary, but in my case I know the reason was too much stress on my back lifting stone and dirt. Nerve compression might be something to think about in your case. |
Hello to all again
I am writing this from the hospital room where I have sat with my husband 24/7 since 05/27/2012, except for a brief 11 day discharge. I became aware that something was wrong with him on 04/22/2012, which was initially diagnosed as Vitamin B12 deficiency.
I wanted to thank everyone for their input along our journey, especially MrsD. I was able to diagnose my husband on June 3, 2012, which was confirmed on June 21st, 2012 by the Mayo Clinic with Auto Immune anti-voltqage gated potassium channel antibody limbic encephalitis. My husband is getting better, again thank you for everything, and being there for me. Sincerely, Julia |
Some things have gotten better, some I think are getting worse?
It's been about 3.5 months that I've been on B12 treatment. I had my first shot on March 8, was to then wait a month for the next shot (this was before I learned about proper B12 treatment when you're discovered to be low), couldn't make it (got really sick, weak, couldn't breathe or think! near psychosis episodes!!!) and got the next shot on April 3. Then, couldn't make it but a few days after THAT shot and got my next one April 6! Then convinced that doctor needed every-other-day shots with methylcobalamin. Did that for a couple weeks but then learned about this forum, the "swinging" of B12 ups and downs in the beginning, especially with shots, and using oral (sublingual) B12 at high doses, etc. I've been on 5000mcg Puritan's Pride every-other-day. On the "other day" I take 3000mcg dibencozide from Country Life. This way I'm getting both active forms of B12 into my body. I take them first thing in the morning on an empty stomach, and let them dissolve under the tongue for a little while (the Puritan's take a LONG TIME to dissolve) before swallowing with water. I don't eat for at least an hour after taking them.
Some things have gotten better, but I notice A LOT of things have not, and may be getting worse, if they are at all attributed to B12 deficiency. Now, let me say that I think I have been deficient for years looking back on all this. I had apathy and extreme lethargy and fatigue kick in sometime in 2007 and 2008! In 2009 it seemed to get worse. Now, I was on inhumane doses of antidepressants at the time, so I thought everything I was going through was attributed to psych drug use. I never knew that I had something else going on. It didn't make itself ultimately apparent until this year, when I got my test results and became VERY VERY sick (confusion, near psychosis moments, dizziness, breathlessness, bleeding gums, absolutely no appetite, trouble sleeping, etc too many symptoms to list!). My question is, is it normal to be having more and perhaps new symptoms of B12 deficiency this far out after treatment? My last check of the level was May 8, and it was 1,844. The symptoms I'm still having trouble with and that scare me the most with regard to this deficiency are muscle and just allover mass "wasting." I voice this concern to everyone I know (my arms are a lot skinnier than they have ever been in my entire life). My friends tell me that it's "all in my head" but I know better! My feet have also shrunk in shoe size a little bit! Shoes don't fit as tightly as before anymore. I voiced these concerns to my doctors, who say everything is normal, and that have I lost weight? I lost a great deal of weight in 2011 and early 2012, but I have since been gaining significant weight back on. (When this whole B12 ordeal began back in late February, when I got tested, I was getting down to the 130s in weight. I am now about 155-160! I am a 5'10" tall man.) How can I be gaining weight yet losing mass in my arms and feet? It's so strange. The only thing I can attribute it to is B12 deficiency, should nothing "else" be going on (and doctors really don't think anything else is going on - no disease processes). I also have a lot of nerve/muscle twitches. A LOT. And they are all over my body. I was so scared by them that I thought I had ALS, but I haven't had any "clinical weakness" and I saw another neurologist who said I couldn't possibly have that (he actually thinks I have NO neurological disease whatsoever - no MS, nothing). He said that it took a long time to get as sick as I am, it will take a long time to get better (he was well aware of the deficiency in B12 and that the numbers are back up, well above the "chart normal ranges" (which I realize are antiquated)). But really? How long? Mrs D, I know you specifically have spoken of a friend on the board named Rose, and that she suffered a long time with B12 deficiency symptoms. (I've seen her website many times during this for support.) If you don't mind my asking, do you know what kinds of symptoms she suffered? Did she, too, have muscle twitches and muscle "wasting" (I hate to say wasting or atrophy because my doctors have confirmed I don't have clinical "atrophy" as if this were a muscular disease, but I do notice nearly everything on me is a bit "shrunken" if that makes any sense! :))? She saw a slow, long recovery. Will I be permanently "damaged" by B12 deficiency? My mind and body are not what they used to be, and this is frightening to me. I worry that I will be this way forever sometimes. Things that have come back/gotten better are my appetite (it's not great but it's getting better, the dibencozide really helped kick this back into gear), I'm not as dizzy as I used to be but I still have dizzy spells, my vision is a lot clearer, not as many days with spots in my vision, some of the nerve pains have gone away, a lot of upper back pain that I think may be related to this has gotten better, although I still have bad days, my memory is a little bit better, but still have some foggy days. My hair has grown back a bit!!! :) Now, granted, I'm still in the thick of antidepressant withdrawal, and ALL THESE things could be related to that, too. If you can shed any light on to what to look forward to or what those who had very, very bad B12 deficiency experiences felt, it would help me so much. Especially about the allover "wasting" -- people say I "look fine" but really I know what I used to look like and this is not me. My arms and wrists feel weaker and sometimes I get numbness and tingling in the hands! This is new! But doctors have tested me and say I am fine. I just don't get it then. |
Well, I am leaving this morning for vacation.
Loss of muscle mass with pain in feet/legs could be hereditary PN... called CMT. Charcot Marie Tooth. We have a post on the Subforum here you can look at. But you could have just lost some water swelling in the feet as well. I would get testing for heavy metals. B12 does mobilize mercury from the body, and it is a long shot that this may be an issue for you? Rose had combined degeneration of the spinal cord. You can Google that term, and read further. She was in a wheelchair by the time her doctor found her very low levels. She used to post here and if you use the members list feature here you can bring up some her earlier posts. I do recall her saying that healing for her was full of ups and downs, however. |
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Mrs. D. What about Epsom Salt soaks before bedtime. That would get magnesium into his body and maybe help with the twitches. It's worth a try. It absolutely can't hurt. Julleri: Try a half cup of epsom salts dissolved in a basin (the size that you can soak your feet in). Soak for 20 minutes. Take your feet out and dry them and then go to bed (if you are ready for sleep I mean). Let us know if this helps with the twitches. The magnesium in the epsom salts are supposed to help with muscle spasms, twitches, etc. etc. I do this all the time. Melody |
Thank you MrsD. I hope you enjoy your vacation.
I really don't think I have the Charcot Marie Tooth. I looked it up and I have basically no symptoms of that at all. My biggest fear are my shrinking mass on my arms with all the muscle twitching. I worry it's flail arm ALS or something. I'm a bit of a hypochondriac. That's why I was asking if this B12 treatment can cause strange things like this, even so far into treatment. Twitching, muscle wasting. I just don't know. Doctors don't seem to know or think anything is wrong. Scares me to death, though. |
Hi all
Hi,
I am new to this forum. Thank you very much for the valuable information you are all sharing through this forum. I am a female, 41 years old, underwent nephrectomy 5 years back. Recently my husband was diagnosed with Vitamin B12 deficiency (<150 pg/ml) after suffering from various health issues for the last 4 years. As I am also having similar symptoms I asked our doctor to get my blood tested and the result is 166 pg/ml. Our doctor says it is not a big issue :mad: No need use to any medication :confused: Through this forum I came to know that how ignorant the doctors are in case of Vitamin B12. I have taken my first shot of B12(cyanocobalamin b12). We already ordered Puritan's Pride Methylcobalamin Vitamin B-12 5000 mcg after reading this forum. We are very cautious on our diet and we are not vegetarians. We take mostly fish or chicken.I don't know why we (both me and my husband) are low on Vitamin B12. I need information on using Methylcobalamin for people under went nephrectomy or any kidney related issues. My other kidney is working fine. I am having severe back pain, fatigue , most of the time feel severe dizziness. Thank you once again. Hope to receive some advice on the usage of Methylcobalamin. |
Welcome to NeuroTalk:
if you have normal kidney function tests, your use of methylB12 should be fine. Most of that oral B12 is not even absorbed. People become low if they have autoimmune issues affecting the parietal cells of the stomach. Acid blocking drugs and metformin are also culprits in reducing absorption of B12 from food. Loss of parietal cells occurs genetically also in people who inherit pernicious anemia. About 30 % of people over 50 may develop low acid in the stomach with aging, and when this happens, B12 cannot be absorbed from food like before. The name for this is achlorhydria. Many people with only one functioning kidney can have normal functions. You can ask your doctor about your clearance rates. This would also affect many drugs you may use for various reasons. I'll be back from vacation in about a week or so. We are still in the Northwoods. Quote:
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I think I learn something from you each and every day. And I now have many people taking Methyl B-12. They went to their doctor, had a blood test and found out that they were INDEED B-12 deficient.
You help a lot of people Mrs. D. Especially this one. Take care Melody |
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Well said. Same here. :) I am grateful. :) :) |
Thanks
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My recent (last month) checkup shows my single kidney is functioning normally. I am not sure about 'clearance rates' you mentioned, I think it is about Creatinine level. Sorry we are software professionals no idea about medical terms. Slowly learing through this forum. Let me post a few results of my blood test here. Uric Acid 4.5mg/dL (2.5 - 6.2)(Figures in brackets are the ranges) Kidney Profile -------------- Sodium 135 mmol/L (136-405) Potassium 4.3 mmol/L (3.3 - 5.1) Chloride 98 mmol/L (95-110) Urea 24 mg/dL (15-49) Serum Creatinine ----------------- Creatinine 0.79mg/dL (0.50-1.20) Urine test results are all negative. Currently I am using a single tablet of Telma (Telmisartan 40mg) every day. My BP is always around 100/70. Doctor says it is good use that tablet, but I always doubt that. I understand, people in this forum are not doctors but sharing our opinions and experiences help us a lot. I wish I should have seen this forum 4 years back. My husband went through a lot. He visited our home country several times only for medical checkups. In our contry of residence medication is expensive and mostly the insurance is covered for inpatients only. The Methylcobalamin tablets are not delivered yet. Waiting for them. |
Is methycobal similar to methylcobalamin?
Hi,
Can somebody please clarify whether methycobal is similar to methylcobalamin? It seems it is going to take long time to deliver methylcobalamin from puritan and we failed to convince the doctor for more shots. Currently I am getting 1ml (1000 mcg) per week. When I checked in the pharmacy for Vitamin B12 tablets in Singapore they only have cyanocobalamin tablets and methycobal tablets. Both are not sublingual. The methycobal tablets are expensive. 10 tablets costs around USD 5. The pharmacist says methycobal 500 mcg can be taken one tablet 3 times a day. Please share information on this. thank you. |
From what I see online methycobal is an abbreviation that might be used for methylcobalamin.
That seems pretty expensive where you are. I'd contact iherb.com and see if they ship to where you are located. They do to lots of countries in fact. When you use orally, make sure it is on an empty stomach for best absorption. Since your serum creatinine is normal, I'd not worry about your dosing. The high levels do have a function, however. It is not to show toxicity, but to alert doctors to hidden disease states which sometimes show high blood levels in testing. Kidney failure and some leukemias, and intestinal inflammations from bacteria may show high B12 levels as a sign. The B12 itself is not doing harm, but in people NOT taking supplements may be a signal to do further testing on the patient. Doctors get used to "flagged" results meaning danger...only in this case it is a referred danger and not a toxic one. |
Thanks
Thanks mrsD for the information.
Yeah methycobol seems to be the brand name for Mecobalamin. I found the following info *edit* (can not add links, please copy and paste the text to view)from the manufacturers. As seen from their website Iherb** ships to Singapore if we order online. As I mentioned, I already ordered from puritan 15days ago, they say they still need 10 more days to deliver here :( |
Hereditary vitamin B12 deficiency
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It appears to be a rare finding, but all information pertaining to B12 is important for us. Many people end up on the net because of some rare issue, that doctors are missing in their diagnostic work ups. I wonder what the treatment mentioned is...? Maybe just higher doses of the supplement? I think the genetic information coming out on the human genome will show other genetic errors with other nutrients. The MTHFR mutations are other examples. I recall Dr. Bruce Ames PhD stating in a paper on PubMed from years ago that he believes there are genetic errors involving many B vitamins in people, resulting in illness. |
I too was wondering how you treat this. It seems that you never really see any follow up on these articles. At least we are now aware of these types of problems.
BTW....welcome back from vacation. |
To MrsD (and anyone else interested)...
... Puritan's Pride is having another buy 1 get 2 free sale...
Sale lasts through September 25. ;) |
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Melody |
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