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@ Wide-O:
This actually happened to me during the summer. I had an "nervous system episode" happen to me right around the time the Olympics started (August 2012 then?) and panicked and had my serum B12 level pulled again. I thought for sure I'd be deficient. I had stopped injections and was only doing sublingual B12s 5000 mcg (methylcobalamin) for several weeks. The reading? >2000. |
Vit B
I had a course of 3 injections of VitB from my GP and found immediately after each injection my walking was worse. One injection each week for 3. I wobbled every where but I stuck at it. My energy levels didn't increase nor my walking. Since been diagnosed with neuropathy after a neurologist tested my nerve endings. Unable to have MRI as I have a pacemaker. Have had CT scan of head, neck and spine with nothing adverse.
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What kind of test was done by your neurologist? And what type of neuropathy was given? Thank you.
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I frankly don't understand doctors in general. |
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They have no idea about how B12 works, only if it shows up in the ranges... That is why it is almost criminal that doctors accept those low ranges as "normal"... really it demonstrates the nearsightedness of how medicine can be! sigh! |
I don't know if this has already been added somewhere in the B12 thread, but I found it to be interesting. The last thing we need is less usable B12.
"Microwave ovens convert Vitamin B12 to an inactive form unusable by humans. From a practical standpoint, this means typically around 30-40% of the Vitamin B12 in microwaved foods gets converted during the time it spends being heated or re-heated in a microwave oven. On the flip-side, spinach loses about 77% of its Vitamin B9 when cooked in a normal stove, but retains nearly all of it when cooked in a microwave. In the same way, steamed vegetables, as a rule, tend to retain more of their nutrients in a microwave than when cooked in a traditional oven." Read more at http://www.todayifoundout.com/index....t7zp1RGG3V4.99 The reference: http://pubs.acs.org/doi/abs/10.1021/jf970670x |
Question for MrsD
Mrs D,
After reading Approx half this thread which took several days I have a question. You seem very knowledgeable about this subject so I want your opinion on this. Let me give a short history of my lifestyle to help possibly shed some light on my problems and how to fix them. I am an American working in North China and have been working all over the world for several years. I am 30 year male. Until around 6 months ago my lifestyle included 1-2 packs of cigarettes a day as well as 1-7 beers in the evening on a very regular basis. I did consider my diet good and try to eat the best quality food I can get as well as have always eaten a lot of veggies raw my whole life. I also drink raw milk when I’m in the US because I grew up drinking it on our farm and simply prefer it to the store bought junk. When I started my current contract I went out one night and drank approx 5-6 beers and then came to the room and went to sleep. Next day I was off work so I rested throughout the day and then ate dinner and got ready for sleep. I smoked my last cigarette and lay down and my life has never been the same from that moment until now. My heart rate went up to around 120 bpm and stayed there I became upset and started to panic I sensed I was going to die and I was sure of it. Few hours later in the hospital I was told there was nothing wrong with me to which I said to them they just can’t see what’s wrong but I know there is something wrong. Since then it gradually got worse to where I had palpitations at a lower heart rate throughout the day with the worst symptoms occurring in the evening always. After one month of dealing with it daily and reading all I could to try to figure out what was the issue was. (I even did a 7 day water fast during this time to try and solve the problem and while this did give me some relief it was only a matter of about a week that I was back to dealing with the same problems.) I went back to the US to see a Doctor that used different methods such as muscle testing and so on. When I got there he had a liver panel done on me that revealed my ALT was elevated to 120 with a normal range of 0-40. He also told me that I was showing signs of a parasite problem. He put me on several things from Standard Process Company immediately with the initial effect seeming to cut back my symptoms however I still was depressed and weak and could not relax or eat much of anything. I started to take Barefoot Herbalist Dewormer that I found in an Amish health food store close to my home and have been taking it ever since and believe it is a very good product although I can’t say for sure if its killed any parasites but I figure it can’t hurt to take it. I have always had depression the last several years and liver issues but was not willing to take the junk the Docs wanted me to take. So I have just lived with it. After coming back to China my symptoms started to come back slowly. I started to read a lot more and found that by eating some things I felt better some types of sea food etc. I concluded I needed some B12 as well as vitamin D. I started taking the cheap B12 that I could get here and ordered some B12 from Garden of Life as well and some methyl B12 strips from Essential Source. After taking the B12 and the vitamin D I feel extremely better than before. Depression is all but disappeared and heart palpitations have only bothered me in the evenings occasionally but are less and less as the days pass. I still look bad though I'm pale and my eyes are sunken. my strength is not back and i have not the mental sharpness i once had. i have been on the B12 and vitamin D for 7 days now. both are Garden of Life brands. My question is this. I am getting ready to go back to my home in the Philippines and want to get some tests done for B12 and vitamin D. What test do I need and what other things should I get tested for as well if any? Also are there any other things I need to consider? I would also like to know if the Garden of Life B12 is a good source? I know I have left some things out but to sum up I can say I had all the classic B12 deficiency symptoms that’s why I tried taking it in the first place. Thank you in advance for the response I have already read about half this thread and it has given me an amazing amount of valuable information. |
Welcome to NeuroTalk:
As far as testing goes, B12, Vit D. I'd also suggest Vitamin B1, thiamine as thiamine gets low when people drink alcohol. The buildup of aldehydes in the metabolism of alcohol can cause the symptoms you describe. Quote:
People of Asian descent can have a genetic mutation that impairs alcohol metabolism. If you are Asian you could have this, and some other races also have this mutation, but not as commonly. So when this mutation is present the reactions to alcohol can be alarming. I'd also get a complete CBC and see if your eosinophils are elevated. This white blood cell elevates, when parasites are present in some people. There are also amebic parasites that can infect the liver. Fish tapeworms can cause low B12. They live in the intestines. I would go to an infectious disease specialist for evaluation of any parasite you may think you have picked up. When you get your testing, stop any supplements you may be taking for about 7 days. Their presence will mask your true status. You can start some thiamine now if you want, 100mg 3 times a day. If your B1 is low this will correct it. B1 thiamine is used in most alcoholic treatment centers when people detox from alcohol. This link explains elevated ALT... http://labtestsonline.org/understand...s/alt/tab/test The most common cause is viral infection. But drugs, alcohol and hepatitis may also elevate it. Your level is not alarming yet. Living in China could be a risk factor for hepatitis however, and you should get that tested for. A, B, and C. |
Thank you all for posting here! Such a wealth of information & insight. I so appreciate it during this difficult period of beginning to understand what is happening to me.
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mrs D, I was wondering if you could help me please.
I have been taking sublingual b12 (cyano) for about a month now, because of tingling in my arms, not being able to stand up straight, weakness and pain in the arms, back pain (I couldn't even wear a bra), and the tingling went away in 3 days, and I gradually got better, so I know my problem is a B12 deficiency (my number was 270 about 6 weeks ago) but during that time I've also had days where I would feel faint, dizzy, and my heart beating really fast - aka symptoms of hypokalemia. I've also had 2 injections of 1ml/1mg of hydro B12 in the past few weeks, but I've since stopped taking all B12 and put a halt on the injections for now because I wasn't sure what was causing the dizziness. Before starting the B12 my arms felt weak, but at least I could think properly. But these new symptoms are scaring me. I've had an MRI of my brain and spine and MS was discounted (no lesions), but do you think I might still have MS even if the brain scan was negative? The symptoms seem to get worse during hot whether, or after I've had a shower (I feel faint). Why would I get these symptoms after starting B12? Am I having a reaction to B12? Could I have low pottasium which is causing the mental issues? Or could my body be adjusting to suddenly having B12 after being deprived for so long? Does taking B12 mess with blood glucose levels? Do you think I could also have pernicious anemia (my ferritin is 10). I also have a thread in the vitamins & supplements section if you want to read it. Thank you so much. |
I got a copy of my bloodwork today. My b12 levels are are 564. I'm in Canada remember. MrsD, you know my story :-)
Set off any alarms of light bulbs? This is back in January, just fyi. |
Good B12 deficiency video!
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be
This is a good video on the severity of undiagnosed vitamin B12 deficiency. It is long and at first I told myself I won't watch all of this. I did watch it all; it was very good! Jason |
Thank you Jason. I'm going to move it up to the beginning of this post. Some people may find this easier than reading, what we have here.
The video is very good, to a point... does not mention correct way to take oral, does not spend enough time on methylcobalamin, or discuss the MTHFR mutations. But still it is excellent in other ways, to motivate people and doctors on the subject. Thanks for posting it, as it seems very new. It will be interesting if the view jump suddenly after that link appear here. ;) |
I had very low B12 years ago, caused so many problems. I am so thankful an integrative MD found it. My first integrative MD. I hope more reg. doctors learn more soon.
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Would you mind sharing some of your problems from the low B12? Do you remember what your B12 level was once it was found to be low? Are you still healing or would you say you are fully recovered now? Thank you, Jason :) |
I slowly got more and more exhausted, unable to sleep after a while also. Then vertigo all the time. Many problems. I can't remember how low the B12 was but it was very low. Reg. doctors never checked it. Years later, an integrative MD did thank goodness. I got better, but then later, got Dysautonomia so I am four years into that healing with supplements, bio identical hormones and diet. More improvement is needed, but I have improved so much.
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Can I use cyanocobalamin and methylcobalamin together
I have been using puritan's methylcobalamin 5000mcg every day for long time(almost an year). My condition improved a bit in the middle but now going back to the old symptoms. Recently I consulted a doctor and he prescribed two Princi-B-Forte(B1-250mg, B6-250mg and B12-1000mg) tables per day. But the B12 in the tablet is cyanocobalamin. I don't want to discontinue my methylcobalamin intake. Can I use both? will there be any side effects to that.
I could not get tablets only with B1 and B6 in it. Thanks in advance for your suggestions. |
Antiparietal cells antibodies
Hi All,
I posted in this forum before regarding my B12 deficienty and I have been using puritan methylcobalamin 5000mcg for almost an year. In the recent blood test my B12 levels are up (1000) but doctor said "Antiparietal cells antibodies" are found in the test and referred me to gastroenterologist. I am not sure what it is and waiting for the appointment. Doctor says it can lead to cancer if not treated properly. Can anybody give some information on that and how serious it is? Thank you. |
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I'd continue with your methylB12 and be sure to take on an empty stomach. The antibodies you mention attack the cells that make intrinsic factor. Intrinsic factor binds to B12 in food and helps with its absorption. Acid is required to release the B12 from animal proteins, first. Autoimmune disease is sometimes a sign of gluten intolerance. So it might be a good idea to be tested for that as well. Did your doctor mention low acid in your stomach as well? |
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No, doctor didn't mention about low acid. I will ask when I see the doctor next time. |
Buy 1 Get 2 Free Sale at Puritan's Pride
Hi all, FYI -
Puritan's Pride is having their buy 1, get 2 free sale again. I have a good supply of vitamin B12 (plus I prefer a different brand over Puritan's). I may pick up some vitamin D. 5000 IU potency vitamin D3, 3 bottles for $9.99! :D |
Sticky's??
It's been a long time since I've been here and just like in the past, I have such a hard time figuring out how to find Mrs. D's supplement list (said with complete embarassment!). I clicked on the sticky, but ??? Forgive me!
I'm specifically interested learning how much ALA is TOO much? Per my doc I can take up to 1200 mg's a day but I've been taking double. And, is Rlipoic truly better? Lastly on dosages-how much NAC is too much? Thank you! I'm wondering (and frustrated by) why sometimes my combination of supplements seem to "shut off" the searing pain in my legs, while other times, it does nothing at all? I was just starting to relax a litte after seeing some improvement in my progressive body burning, only to be up all night with worsening pain again? I've been on the supps for about 2 months consistantly. The only thing I stopped was the B12 injections because I was getting severe acne. After doing some reading I learned the sublingual were just as effective so I ditched the needles and stayed on my jarrow 5000mcg (25,000mcg). However, I dropped the injections weeks ago so I'm not sure that has any tie into why I'm exploding with pain. I didn't eat or drink aything I don't typically eat or drink. No extra stress. I'm on 3600 mg's of neurontin too and just starting to see hope of decreasing it for the first time in 4.5 years. Any info would be greatly appreciated! Thank you:) Kate |
There have been people who use quite a long list of supplements.
Some of their posts can only be found using the search function. One was Wing42... and when people mention the stickies, usually that is what they are looking for: http://neurotalk.psychcentral.com/post9580-18.html http://neurotalk.psychcentral.com/post9583-19.html http://neurotalk.psychcentral.com/post9586-20.html Those 3 posts are what worked for him. I tend to have people start off with the most common deficiencies and fix those first, then add in other things according to their symptom development and history. Some people have DNA damage and so supplements for them would cluster on DNA mitochondrial support. (mostly from toxins and drugs) Others have diabetic or alcohol induced PN and ALA (or the new stabilized r-lipoic acid and benfotiamine would help more that that. So therefore there is no one "list" that would be better for everyone, since there are so many types of PN. For explanations of the various common supplements there is my supplement thread. http://neurotalk.psychcentral.com/thread121683.html The subforum above has several posts now discussing the various supplements..this is its link: http://neurotalk.psychcentral.com/forum119.html Yes, R-lipoic is better absorbed, but you need to choose the STABILIZED form, which is also called NaRALA on the label. Doctor's Best makes this. 100mg a day is often enough. The old ALA used in high dose should be taken on an empty stomach...1/2 of it is not active. You can spend alot of money on this type, whereas the STABILIZED type is less expensive by far to use. NAC doses are typically 600mg a day (up to 3 times a day if tolerated). Flares seem to occur for everyone to some extent. The Weather can do it...with extreme lows when storms move in triggering pain. Some people with autoimmune issues have waxing and waning periods when their disease becomes more active, and then later on sleeps. People with inflammatory types of PN can see improvement during flares with aspirin (in AlkaSeltzer form) or other NSAIDs. Fish oil can help this type as well. |
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My skin biopsy is still w/in normal limits but is HALF of the value it was in Dec of 2011. That plus this rapid increase in pain and location, only proves I'm progressing despite the IVIG intervention. The only thing I've stopped is the ridiculous amounts of antibiotics I was taking for the lyme. The neuro wouldnt treat with IVIG unless I stopped abx prescibed by a lyme specialist. Knowing that long term use of abx can also CAUSE neuropathy by decreasing B's and was only making me so, so sick, I had no problem stopping (ive been on a for 14 years icluding years of IV abx). I am beyond frustrated that I CAN'T figure this out!! I was NEVER good at solving mysteries and even used to get my butt kicked in Clue as a kid ;) Help!!! |
Puritan's sale and vitamin D3
Hi again all,
I know I sound like a Puritan's Pride spokesman, but I am not! It's just that they are having such an amazing sale for the Memorial day holiday, and the sale ends today! I got 3 bottles of vitamin D3, 100-counts, 5000 IU for $2.99 TOTAL, with FREE shipping. That's pretty amazing, and vitamin D is another one I was low in, and another one, like B12, that can be hard for people to get enough of... Hope everyone is doing well. ;) Jason |
Thank you for the reminders, Jason! I made an order yesterday.
I like it that they now take PayPal... and that 5,000 IU Vit D is the one we use too! Today May 28th is the last day for free shipping, too. It is a nice way to get your yearly supplements. And BTW, Puritan's Pride and Vitamin World are the same owners. Vitamin World however...is much more expensive. I talked to Puritan's a few months ago and they verified that for me, since I started getting Vitamin World emails thanking me for purchases I wasn't making! Seems they have combined their mailing lists. |
Nubie
I am a nubie here but have been reading a lot of the back posts. I have been taking the cyano B12 for many years because of the tingling in hands and feet and "cloudy" thinking that comes on if I don't take an injection every three weeks. I have kept my levels at about 1040 for years and it works for me. Early in life I was told I would be in a wheel chair later in life. I am 67 now and just fine. I have had DNA testing done and the problem is hereditary in my line. My daughter and son both have the same symptoms and must inject B12 monthly. I live in Manitoba, a province that is supposed to have one of the highest MS levels in the world. I think a lot of the symptoms of mild MS doctors here are finding and treating are really B12 problems. I have one question however. I have always injected into my thigh muscles just because I find it easiest. Do you think this is the best spot? I was originally told to do it in the stomach area but never did.
Dave |
There are now recent studies showing no difference between oral and injectable. If you switch to daily oral, use the active form methylcobalamin on an empty stomach....you won't need injections at all.
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As someone who had injections before and then tried oral, I can confirm what MrsD. says. It's cheaper and less hassle.
If you continue to inject, however, B12 injections are preferably done intramuscular. Best place (as it's the largest muscle area) is the lower back just above the buttocks, but since that is impossible for self injection, the second best choice is the thigh. Of course, this depends on the type of needle you are using: if you are using the short ones (I forgot the technical details) it won't really matter; the needles for IM are a bit longer, but can also potentially damage nerves if you miss the correct spot. I have never ever heard about injecting in the stomach, even in long discussions with medical personnel about the best spot for B12. |
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Obtaining B12 through food instead?
I've been trying to dig through this thread and the forums, so pardon me if this has been addressed and I missed it!
I'm curious about how difficult it is to raise B12 levels through diet rather than supplementation. My B12 levels are sitting around 310 right now. I don't have dairy or bread/cereal, so I'm not really getting much of the fortified stuff. Is it feasible to get levels up to better levels through dietary means rather than supplementation? Duck eggs, fish, and the like. I tend to have unpleasant reactions to medications (and am allergic to nickel which to my understanding nickel and cobalt allergies often go together?), so I've been a bit nervous about trying B12 supplements though I do not know if I would even absorb enough from what I'd be eating. I've been doing a mostly paleo diet for a bit over a year so unfortunately while they suspect possible celiac or gluten issues, the blood test turned up negative so I am waiting to see a gastroenterologist. |
If you have low acid in the stomach or broken
intrinsic factor you may not benefit from dietary B12. You are low for a reason so supplements Are the best way to go. Activated B12- methyl cobalamin is very inexpensive (as low as 6 cents a dose) so not availing yourself of it seems odd to me. |
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Pipbub...I tried foods to increase b12 levels, no good in my situation. I must take subligual methylcobalamin and use the Pure Encapsulations brand because it gives me the least amount of side effects. I am also allergic to metals, cobalt included. Two yrs ago when my b12 level was quite low, I saw my Rheum, endo, allergists, ENT, neuro, surgeon and primary docs on a weekly basis. :eek: All recommended this form of b12 supplement. I haven't taken a medication, not even tylenol, for 25 yrs due to untoward side effcts. Having had many small bowel obstruction surgeries, my ability to absorb b12 is limited, at best. I also have psoriatic arthritis, which clouded finding this b12 malabsorption for many yrs. My symptoms were devastating: surgeries planned, neuropathy in hands and feet, I could nolonger read, walking was diffcult, glucose control concerns showed up, unable to lift my purse, pulsatile tinnitus, heart irregularities, my memory was gone, extreme pain, vision problems. I didn't have the usual depression associated with lack of b12 so b12 was overlooked. Had I not read up on it, I wouldn't be alive. You're concerned about side effects of taking the b12. My docs wouldn't give me the injections due to my extreme allergies. My initial dose of sublingual methylcobalamin, 2000mcg, resulted in a cough and sinus drainage. As expected, it was extreme, but I lived...:) Taking a med to fend off the cough and sinus attack wasn't an option for me. But, because the level 10 pain I'd lived with for many yrs was cut to a level 5, I continued dosing each day. After a wk of coughing, I called my primary, who suggested I cut back the dose, which I did to 1000mcg... still the cough. I then revisited the allergist, ent, neuro, etc... New side effects started after a few wks, node swelling, vivid and bad dreams, hormonal issues..more doctors, orders to stop taking the b12 for 2 wks then to take 20 mcg and work up to a dose that gives me relief. During the 2 wks, all side effects disappeared. Pain and neuropthy reappeared. :( After 2 yrs, I take very small doses, 150mcg-250mcg, a couple times per day. When the cough gets too disruptive, I skip a day. It's a miserable day, though. My advice to you is to try the liquid drops of methylcobalamin and start at a low dose schedule. Depending upon your side effects, seek out foods that supply other nutrients to help b12 do it's job. Study b12 deficiency, understand it's importance. I am still studying. Hope this helps. You're probably not going to find anyone else that has a sensitivity to cobalt but if you do, please let me know. Oh..explaination to my metal allergy was determined to be from injesting cobalt blue paint for yrs. Oh, yes, I did. :eek: I'm an artist, and back in my young and stupid yrs, I was instructed to wet my paintbrush by sticking it in my mouth. enjoy the day... deb |
Hello all,
I'm new to this site and I have been very pleased with all the information I have read about Vitamin Deficiency, especially concerning Vitamin B. I was recently diagnosed with Vitamin D deficiency and lab work showed low Vitamin B (285). I am getting the homocysteine and methylomaic acid tests done this weekend, hopefully this will be the start of some answers concerning my nerve damage. My Dr gave me 5 injections of Vitamin B prior to requesting I get the homocysteine and methylomaic acid tests so I hope that does't mess with the results. I'm going this weekend so three weeks will have passed since my last shot. I'm also wondering if some of the symptoms I've been experincing are due to the shots, first week I had upset stomach, loss of appetite and I have constant burning sensation in my arms and sometimes legs. I didn't notice this until after the 5 shots. I also wake up feeling like I lifted weights the night before :eek: ...achey joints and muscles. Since I have to continue with monthly shots I hope the side effects subside after awhile. |
One should avoid injections for up to 7 days before any testing.
Post when you get the results of your MMA and homocysteine tests. I would assume you are getting cyano form in those injections? If you are not methylating well, (if you have the MTHFR mutations) the B12 in the serum will not be activated to methyl form in order to work. Make sure also you are using D3 (OTC) and not the D2 that is given on RX still by doctors. The D2 form does not work much at all it has been discovered recently. Here is the D thread on our Vitamin forum: http://neurotalk.psychcentral.com/thread92116.html The links and newest information are on that thread for you to study. |
Well the nurse left me a message today and said my MMA and homocysteine tests came back normal but did not say what the numbers were. They are putting me on b12 injections for 6 months (CYANO FORM) then she said a pill form after that. They are also referring me to the big University Neurology department to get more tests done. I can feel my anxiety coming back, I just want to be normal again.
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Look into this. Just might help. Take care, Melody |
I'm not sure what could be causing my low levels and I even told them about my ulcer and h-pylori. I hope the fact that my Dr gave me 5 injections before the MMA and homocysteine tests did not change the results who knows. My foot is getting worse and it's beginning to get painful, I'm scared to death it's something serious beyond vitamin defiency especially since my opposite wrist is damaged too. Ughhh this is so stressful.
Can I take Methyl B-12 while doing the injections as well?? I am defiantly going to start, I'm willing to try anything. I'm also going to go to the lab afterwork today and get a print out of my results. |
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