Vitamin B12, demyelination, remyelination and repair…

    • Anonymous
      January 4, 2007 at 6:32 am

      Hi Everybody,

      I don’t have GBS – my brother does, so I was doing some research to see if there were any nutritional recommendations to help his recovery.

      I came across this article at Life Extension — see excerpt below:

      [QUOTE]Myelin sheath, the “insulation” around nerve cells, is critical for nerve conduction. Degeneration of this protein causes serious neurological diseases. Myelin is created and maintained by methylation reactions that depend on vitamin B12.[/QUOTE]

      It’s a long article covering more than neurological considerations — AND — do keep in mind the LEF sells supplements, but they do seem to support their information with references.

      http://www.lef.org/magazine/mag2000/dec2000_report_b12_2.html

      Here is some supporting info from PubMed:

      [B]Vitamin B12, demyelination, remyelination and repair in multiple sclerosis[/B]
      http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15896807&query_hl=1&itool=pubmed_docsum

      ANYWAY – I did a search on your site here and found some folks that are interested in supplements so I thought I would share what I found.

      Best wishes…
      Jann

      BTW: Is there a reason your forum software doesn’t provide “link” capabilities? Some URL’s can be quite long. ??? — just wondering –???

    • Anonymous
      January 4, 2007 at 7:35 am

      Jann,
      Thanks for sharing your information. Is your brother currently taking B-12 as a supplement? Has his Dr. agreed with this and if so, how much does he take.

      JayDee

    • Anonymous
      January 4, 2007 at 7:38 am

      I am curious as to how many have gotten good results from B-12 shots. My doctor put me through some, but we quit when there was absolutely no change. I am interested in the results of others.

    • Anonymous
      January 4, 2007 at 8:34 am

      Jan,

      They don’t allow hyperlinking anymore because of some issues that happened not so long ago. Usually I take off the h t t p://www. and just post the balance of the URL for cutting and pasting and then all the other garbage doesn’t show up around the link.

      On a side note about your B12 research I don’t use any supplements other then calcium and vitamin d. However when my youngest brother was 2 he almost died from a Neurological illness that took them a long time to diagnose. I think it was called Leighs Disease or something like that, a vitamin B12 deficiency, it left him paralyzed for a short time and caused alot of Neurological issues. Just wanted to add to what you had said.

      Jerimy

    • Anonymous
      January 4, 2007 at 9:30 am

      [QUOTE=janz]
      ANYWAY – I did a search on your site here and found some folks that are interested in supplements so I thought I would share what I found.
      Best wishes…
      Jann
      [/QUOTE]

      Hi Jann,
      Thank you for the links. However, I am more interested in finding the normal foods containing natural B12. Is it possible to avoid supplements by eating B12 naturally? It should be possible to get most vitamins by eating a varied diet, however, if not I would like the supplement. B12 cannot be bought over the counter in Denmark, so I just asked my doctor to test me for B12 deficiency.

    • Anonymous
      January 4, 2007 at 10:33 am

      although supplements may help some gbsers w nerve damage, the main healer by a long margin is time in a restful mode. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 4, 2007 at 12:27 pm

      Hi Everybody,

      [B]RE: Is my brother currently taking B12?[/B]
      No he’s not — he’s newly diagnosed and is still in rehab. I’m going to mention this information I found about B12 to my brother and have him talk to his doctor about supplementing and/or testing for a deficiency. I don’t think supplementing will be a “cure” — but am just wondering if it will help him recover more quickly because of B12’s association with the myelin sheath and also fatigue. — ??? —

      One common note throughout the articles I’ve read is that a B12 deficiency can be caused by low stomach acid (hydrochloric acid). I have read this idea / suggestion in other research that I’ve done (vitiligo) — mostly in “alternative” medicine type publications — that low stomach acid is involved in many autoimmune diseases . Vitiligo is a skin condition — thought to autoimmune — where the skin loses it’s ability to pigment. Having low stomach acid affects the way food / nutrition is digested by the body and poor digestion can lead to “Leaky Gut Syndrome” — which is a whole other topic. ANYWAY… your ability to properly digest nutrition is another ‘thing’ to consider when you approach your health care nutritionally. And that’s true whether or you use supplements or not.

      I think it’s a good idea to check with your doctor before taking supplements — I treat taking my supplements like medicine. You always have to consider toxicity concerns, however, I did find this info on B12 (below) – but somewhere else they may dispute this information — so again… CHECK WITH YOUR DOCTOR.

      [QUOTE][B]What is the health risk of too much vitamin B12?[/B]

      ods.od.nih.gov/factsheets/vitaminb12.asp

      The Institute of Medicine of the National Academies did not establish a UL for this vitamin because vitamin B12 has a very low potential for toxicity. The IOM states that “no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals” [7]. In fact, the IOM recommends that adults older than 50 years get most of their vitamin B12 from vitamin supplements or fortified food because of the high incidence of impaired absorption in this age group of vitamin B12 from foods that come from animals [7]. [/QUOTE]

      [B]Here’s a link discussing B12 food sources:[/B]
      thirdage.com/healthgate/files/10994.html

      [B]Here’s a link discussing B12 injections vs oral administration:[/B]
      diagnose-me.com/treat/T39005.html

      The research I do is kind of “my thing” — I have autoimmune issues, so I’m always looking for nutritional aspects that I think might relate. My kids are grown, but I want them to have the information about nutritional associations in hopes that maybe the autoimmune issues won’t hit them. I tell them that we don’t have control over the genetic aspects, but we have absolute control over –our attitude, diet (nutrition), and exercise.

      ANYWAY — I’ve read in some posts where it can be hard for GBSers to type. I don’t have that problem so if there is an area of interest I will be happy to research and share what I find.

      Best wishes…
      Jann

    • Anonymous
      January 4, 2007 at 4:18 pm

      Jan,

      I have vitiligo as do several members of my extended family going way back. Does it also run in your family? I know it is Autoimmune and was the beginning of my run of Autoimmune illnesses. Let me know if you have found anything interesting, email me jerimyschilz at hotmail dot com. Thanks.

      Jerimy

    • Anonymous
      January 4, 2007 at 6:04 pm

      I went to the Vitamin Shoppe and asked them. They looked it all up in a large encyclopedia type of book.
      They told me you need a B-Complex, Folic Acid and Soy Lecithin as well as Calcium.
      I got all those for Nate but no doctor would write an order for them. The Hospital he was in would not allow him to take them because of that little rule.
      I gave them to him when I was there and he was able to take some sometimes also if he snuck them.
      He had them in a lock box and only he had the key.
      He has been on them steady since he got home though but I feel like he should have been allowed to get all he could early on.

    • Anonymous
      January 4, 2007 at 10:34 pm

      [QUOTE=anniedee3249]I am curious as to how many have gotten good results from B-12 shots. My doctor put me through some, but we quit when there was absolutely no change. I am interested in the results of others.[/QUOTE]

      I was started on them before I was diagnosed with CIDP, and have continued them. They really haven’t done anything to help me improve. My symptoms have very slowly increase over the past few years. So right now I can’t say the the B-12 shoots [weekly] have helped slow things down. In the meantime I plan to continue them. They are not hurting anything so …

      Jim C

    • Anonymous
      January 5, 2007 at 7:19 pm

      Hi Jim ~ you stated that the B12 hasn’t done anything to improve you [I]but[/I] how would you know if the B12 has helped to keep you from getting worse?? In life, there are truly no real double-blind studies ~ there are just to many variables. For me, I can “feel” the difference whether or not I take the B12. Each of us is similar but different, hence some things work for some and not for others. Success in finding what will make a difference for you 🙂

    • Anonymous
      January 5, 2007 at 11:41 pm

      Jann,
      The first time I had GBS my doctor had me inject B12 into my thigh maybe 3 times a week (this was 20 years ago). But the GBS stopped short of my being unable to walk…shuffle yes. I was unable to get the nurse to make me an appt. with him this Fall so I had to go it alone. Now I wonder if it kept it from getting worse like it did this time…..or is it that I am older. When I see how much longer it took me this time to get better, I now believe the B12 helped.
      The Life Extension website is [url]www.LEF.com[/url] or .org Durk and Sandy Pearson wrote the Life Extension books years ago and they were brilliant and ahead of their time.
      B12 does not work as well when used in a pill although I am taking a 100 B-compex capsule four times a day. It is better to take B12 sublingually. Be careful not to take B12 or any single B by itself. You need to have a B complex with all the B’s and then you can take more of a single one. They work synergistically.
      I had a friend in medical school in Philly tell me that I knew more about vitamins than they were teaching him. That was years ago but I bet they are still not teaching it enough. I heard that doctors have to take courses and get certified if they are going to recommend more than a certain percentage of nutitional supplements. I have been lucky to have gone to 2 excellent wholistic doctors. If we had more of them, the US would rate higher among the other countries.

    • Anonymous
      January 6, 2007 at 12:46 pm

      🙂 Well now, this is very enlightening, my doctor only gave me 1 shot every few months, maybe that is why I did not feel a difference.

    • Anonymous
      January 6, 2007 at 2:24 pm

      Hi Everybody,

      I just talked to my brother and mentioned the B12 therapy. He told me that they already have him on B12 therapy. He’s now in a rehab hospital and they give him pills, but at the other hospital they gave him an injection. He was only at that hospital for 5 days so I don’t know if he got more than one B12 injection while there.

      ANYWAY — he was able to walk 14 feet yesterday and was able to “throw” his arm up over his head. I was happy to hear about his progress and especially happy to hear they are including B12 in his therapy.

      The other supplement consideration I have him investigating (ie; ask his doctor) is vitamin D. Vitamin D deficiency has been in the news quite a bit and I’m sure you’ve all heard about a deficiency being implicated in autoimmune diseases.

      When my brother came down with the bronchitis and was going to the doctor I told him to ask his doctor for a 25, hydroxy blood test to measure his current level. Well, with him getting GBS, he’s not sure if the lab ever did the test or not. I’m hoping they did so that we can measure where’s he’s currently at — I’m sure he needs to supplement. Well… this is a whole other discussion this vitamin D stuff — if anybody’s interested, let me know, and I’ll share what I’ve found out.

      Best wishes…
      Jann

    • Anonymous
      January 7, 2007 at 12:49 am

      Jann, I have pernicious anemia and have to have B12 shot every month, dx 1989 with PA and in 2005 with GBS. Am interested in your research. Thanks for sharing it with us.

      Peggy

    • Anonymous
      January 8, 2007 at 6:01 pm

      Jann,
      I made a fairly long post earlier today/Monday under the GBS/Adult forum with this subject line: [U]”Might help nerve regrowth/B-12 Methylcobalamin”[/U]
      Have you heard of it? You might want to ask the doc about this other type of B-12 for your brother. I didn’t even realize there were 3 types and supposedly the B-12 Meth is best for nerve regeneration, etc. I understand it can be given as an injection or a tablet dissolved under the tongue. Read the post when you have a chance. I just started taking the pills a couple days ago & am keeping my fingers crossed. I have not discussed this yet with my Neuro, but I intend to at my next appointment. Good luck.
      Debbie

    • Anonymous
      January 8, 2007 at 8:03 pm

      Hi Debbie,

      I’ll ask my brother if the B12 pills they’re giving him are the “[B]methylcobalamin[/B]” kind. He probably won’t know, but maybe if the doctor stops by he can ask.

      I’m leaving on Wednesday to go see him. It’s a long 16hr drive — hope the weather is OK for driving. I’m just anxious to see him in person. I’m going to print off the Life Extension article so that we have it as a reference.

      Thanks for posting your info — I think all the tips are so helpful.

      Best wishes to YOU!

      Jann

    • Anonymous
      January 16, 2007 at 3:23 am

      Hi Debbie,

      I’ve travelled to see my brother and found out that he is taking an oral tablet of “[B]cyanocobalam[/B]in”. He asked his doctor which kind of B12 he was taking and the doctor said he wasn’t aware of different kinds — ??? — The nurse left him the tablet container and cyanocobalamin was written on it — so that’s the only reason we know what kind it is. He takes 500 mcg daily along with a multi-vitamin.

      I did some searching around and I haven’t been able to find any clinical references for taking one kind over the other. The “Life Extension” [ lef.org ] website does talk about the different kinds and does seem to indicate that methylcobalamin is the preferred type — HOWEVER… they SELL supplements… so I would feel better about their recommendations if I could find a reference that wasn’t also in the supplement business. Don’t-get-me-wrong, I’m a member of “LEF” and buy some of my supplements from them — I just think it’s important to validate their information with clinical studies etc etc.

      I did find this site which I thought had a good explanation too — not sure “who” the website is though — but it was interesting:

      [url]http://www.vitamins-supplements.org/vitamin-B12-cyanocobalamin.php[/url]

      If you find any published studies on using one type over the other, please share the source. I hope to be at the hospital when the doctor comes by so that I can bring this topic up.

      Best wishes…
      Jann

    • Anonymous
      January 16, 2007 at 9:07 am

      I don’t know if my case is related or not but i wanted to share. my recent dx of CIDP. The moment my new neuro said those words to me he started me on weekly injections of b12 for a month and now i am on monthly injections. i really didn’t ask any questions at the time, i guess i didn’t feel b12 couldn’t hurt me and i had other questions at the top of my list, but at my next visit i will ask.

    • Anonymous
      January 17, 2007 at 12:12 am

      Jann,
      Here are a couple of articles I found you might want to read through when you have time. One is a clinical study pertaining to B12Meth & diabetic neuropathy. The other is from a site called Health101.org and it does cite references. Even though they’re not specifically talking about B12 and GBS, I thought they were still worth the read and do address nerve/neuropathic pain. I’m taking 3000mcg/day in sublingual tablets along with a multi-vitamin. I have not discussed this yet with my doctor, but I have an appointment in a couple weeks and I’ll ask him about it then, but you know how funny doctors can be about supplements. From all that I’ve read I don’t think I’m doing myself any harm, but I will talk to him about it. For the nerve pain in my feet, I also take 75mgs Amitriptyline at night. It does seem to help, but can take a couple of weeks to kick in. Hope your brother is doing better.
      Regards,
      Debbie in Miami

      [COLOR=green]1. [/COLOR][URL=”http://www.health101.org/art_methylcobalamin.htm”][COLOR=green]http://www.health101.org/art_methylcobalamin.htm[/COLOR][/URL]
      [COLOR=green]2. http://[/COLOR%5D%5BURL=”http://www.laurieulrich.com/jasper/methylcobalaminarticle.htm”%5D%5BCOLOR=green%5Dwww.laurieulrich.com/jasper/methylcobalaminarticle.htm%5B/COLOR%5D%5B/URL%5D
      [COLOR=black]If you read the 2nd article, then you’re probably wondering, what is homocysteine? You can find the answer here:[/COLOR]
      [COLOR=green]3. [/COLOR][URL=”http://www.americanheart.org/presenter.jhtml?identifier=535″%5D%5BCOLOR=green%5Dwww.americanheart.org/presenter.jhtml?identifier=535%5B/COLOR%5D%5B/URL%5D

    • Anonymous
      January 17, 2007 at 9:31 am

      Hi Debbie,

      Thanks for the response.

      I’ll be anxious to hear what your doctor says about your supplementing with the sublingual form of B12 – methylcobalamin. And I agree with you — I do not think you are hurting yourself. For our purposes, I think the real question is: [B][COLOR=”Red”]What is the most effective version of B12 for the purposes of remyelination ie: the repair of the myelin sheath[/COLOR][/B].

      Good luck with your doctor visit — be sure to print and take with you any supporting documents that support your health decisions. I have found that is the best way to educate / train my doctors. Most doctors are really appreciative because they often just do not have the time to keep up with everything. I always approach / preface my “presentation” with … “Dr. so-in-so… I found this information and wonder if you have a perspective / opinion… or experience to share… etc” Some doctors can have huge egos and don’t want to be “told” anything… but as I’ve said most are appreciative.

      Best wishes…
      Jann

    • Anonymous
      January 17, 2007 at 11:53 am

      Thank you for sharing your research on vitamin B-12. My friend has GBS and I have been asking her Dr. and more recently her healer about it. You have uncovered another layer of the [U]type of B-12[/U] and I am so excited to share the info with them. The healer has her on a fantastic multi-vitamin and supplement product in which 96% of the product is properly absorbed by the body… some products are very popular but minimally absorbed. Amazing that advertising can be so blinding. Anyway, thanks for the specific information and reference to further info. It is so beneficial to have people with various interests and beliefs share the info. I am crazy busy in taking care of ailing parents, a thyroid affected boyfriend and a GBS afflicted friend. I appreciate your time and information in posting this great stuff!!

    • Anonymous
      January 17, 2007 at 1:04 pm

      I’m 19 months out from GBS onset–six weeks in IC followed by six weeks of acute rehab. I’m under treatment by both a “conventional” GP, and an alternative medicine practitioner who advised taking a B-complex supplement to accelerate healing. I’m told I’m doing exceptionally well, although the slowness can be frustrating. Like anyone else I want my full physical capacities back. It’s hard to tell if the B supplement is helping, but I doubt it can hurt. I think it helped with my energy level too, as that really improved last July. I have days that I almost feel like I’ve got normal energy again.