vitamin YAY!!!!!!!!

Tell us what you are using to treat your MS-- and how you are doing.

vitamin YAY!!!!!!!!

Postby jimmylegs » Wed Apr 19, 2006 7:00 am

ok get this: i was getting slowly better but then my daily b complex pill pushed my folic acid over the top and i started itching like mad.

i dropped the daily b complex to 3x/wk, and kept on with the b12. then i noticed that my last problem to resolve had taken a turn for the worse. my hands felt like dead slabs of meat on the ends of my arms (i could still carry things though, with great care) and my forearm spasticity was nasty.

i decided that b12 was obviously not going to work alone. i took some b complex ingredients other than the folic acid, some for anxiety and others for neuroprotection, and my sensory in my hands changed back to improving **within an hour**.

so i did some reading on b1 to start, and realized that it really needs b12 and the rest of the complex to absorb, and i've been low on b12 for YEARS plus drink way too much coffee and tea, which strip out thiamin too.

yesterday i megadosed b1, b2, b3, b5, b6 and b12 and today i am typing with all my fingers again, without looking at the keys, for the first time in weeks.

yay!
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Postby Shayk » Wed Apr 19, 2006 8:42 am

Yeah for you Jimmylegs.....

Onward and upward....

Sharon
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How much did you end up taking????

Postby notasperfectasyou » Mon Jul 10, 2006 12:28 pm

I think this is important stuff and was wondering how much of each B you've ended up taking and what was needed to get your fingers back? Oh, BTW, I found D3 in softgel form at vitaminshoppe! I'm especially interested to know how much B12. napay
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mega b info for u

Postby jimmylegs » Mon Jul 10, 2006 6:32 pm

hi there, okay here's a big section on B12, a little blurb on the B-complex amounts, and a tiny comment on the D3.

B12

my b12 is a sublingual tab, 1000mcg. you probably know this, but sublingual supplementation goes straight into your bloodstream, not through the GI tract. my b12 is methylcobalamin which is more metabolically active than the usual cyanocobalamin (longer shelf life, cheaper, but your body has to split off the cyanide in order to use the cobalamin). i think it's worth the extra money for the methyl form.

when i did not have any alcohol for a month of 1000mcg b12 each day i got my serum level up to 640. i was happy because i wanted to keep it up above 500. as soon as i introduced the odd beer again it went down into the 300s. so it's very very easy to mess up your absorption.

i said in my earlier post that b vitamins are best absorbed when taken with the rest of the complex. i also found out b12 needs calcium to absorb properly too. but i don't think i knew that when i took the megadose that brought my hands back. it's just something i do now - i take a gram of calcium when i do my b-complex.

i will caution you that i was particularly susceptible to general b-complex deficiency because of my dietary habits. although ms patients can be low in b12, it is important to know why you are in particular. if you too are low it could be an absorption problem as opposed to intake. one way to start figuring this out is if your serum cobalamin (b12) is low, then have the lab check your homocysteine and mma levels. you should also know that alcohol metabolism pulls b12 from tissue into serum and can cause falsely elevated results which would mask deficiency. i don't know how long this effect lasts after alcohol consumption, or if it is dependent on a minimum amount or anything.

also typically your doc won't think you are deficient or at risk for it unless you're down under 200. but there are american medical resources which state that further testing for deficiency should be conducted if serum values are under 400. then you find research on ms that says we aren't deficient because a bunch of ms patients had their levels tested and there were plenty with levels over 300 or something like that. so that research has the line for sufficiency in a curious place, doesn't it!

B-COMPLEX

when i got motivated to do that extra boost i had been reading the 1970s klenner protocol for ms.

so that day that i took the extra b complex vitamins, besides the b12 it was 300 mg b1 (thiamine), and 100 mg each of the others - b2 (riboflavin), b5, and b6. I believe i took 200 or 300mg of b3 (niacin with the flush, not non-flushing niacinamide... you want the niacin flush, i believe, to drive blood and nutrients into places they don't normally go in such volumes. it takes different amounts to get a good flush depending on how full your stomach is and what size you are. i have a b-complex that contains a gram of niacin, that certainly does the trick!!! i prefer to get by with less and don't take that high niacin complex now).

i just had to do the b-complex megadose the once, and there i was typing again the next day. if i keep up my vitamins, i keep my function. if i slack off for a few days, things get worse. i slacked this last week and yesterday going up the stairs i felt a hint of awkwardness in my legs. will take the bs today for sure!

D3

hey that's great that you found softgels! are they 1000s? do you take four per day? do you have a serum value for your vitamin d? (u probably already know this but fyi if you ask your doc for a lab req it has to say 25hydroxycholecalciferol not 1,25dihydroxycholecalciferol.)
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Thank You!

Postby notasperfectasyou » Mon Jul 10, 2006 6:56 pm

Thank you Jimmy!

The D3's I got are made by Carlson and they are 2000 IU. 120 Softgels in the bottle. It was very cheap like about 5 bucks. On the side of the bottle under supplement facts it says that they are D3 (cholecalciferol).

I got them at Vitamin Shoppe. I also found sublingual B12 (methylcobalamin). Cherry Flavor! Vitamin Shoppe was impressive today.

Quick clarifying question, on the B12 - 1mg per day? The 1994 Japanese study had them taking 60mg a day for 6 months. Not that we're going to start taking that much, but how did you arrive at the dosage you're taking? Are there other studies with lower dosages? napay
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great news napay

Postby jimmylegs » Mon Jul 10, 2006 7:10 pm

wow 2000s d3 that's great! i'm taking mine as liquid right now, it's diluted in olive oil, kinda icky! lol. i love how cheap d3 is too, great find.

also, great find on your sublingual methylcobalamin. my first find had a gross artificial sweetener in it and i felt sick every time i took it but i have an unsweetened one now, much better.

i believe i arrived at my 1000mcg b12 per day from the klenner protocol. it's enough to get your levels over 500 if you are careful and do not have absorption issues. i think the 60 deal would be pretty unnecessarily expensive. they may have noted better improvement with smaller amounts if they had combined the b12 with the rest of the complex and with calcium. i wonder if they tracked homocysteine at all while megadosing the cobalamin...
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Jimmylegs: Vitamin B-12 Expert!!!

Postby notasperfectasyou » Fri Apr 04, 2008 12:43 pm

Jimmylegs,

So my vitamin store is temporarily out of Methylcobalamin today. This got me wondering and I thought this little thread needed a bump. You are the TIMS B-12 expert and I'm hoping you'll share any updates you may have on this topic.

I also want to add a fine little study I found, which might already be here, but I couldn't find it.

Attenuation of Experimental Autoimmune Encephalomyelitis
and Nonimmune Demyelination by IFN-b plus Vitamin B12:
Treatment to Modify Notch-1/Sonic Hedgehog Balance


I've never seen the word "Hedgehog" in a medial journal before. Ken
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Postby jimmylegs » Fri Apr 04, 2008 3:23 pm

hi napay :) well as a matter of fact i do have a very minor update. you can also try hydroxycobalamin instead of methyl- if you want to switch things up! also more biologically available compared to the cyano form.
sorry i have not been scouring the literature for new publications on b12 and ms!

haha, i love hedgehog. especially the sonic kind!
http://en.wikipedia.org/wiki/Sonic_hedgehog

i also like the web site of the journal where you found your article ;)
"www.jimmunol.org"

also, a reference of interest from your posted article:
Mastronardi, F. G., L. A. daCruz, H. Wang, J. Boggs, and M. A. Moscarello.
2003. The amount of sonic hedgehog in multiple sclerosis white matter is decreased and cleavage to the signaling peptide is deficient. Mult. Scler. 9:362.

hey, you don't see cleavage in a medical journal that often either, in my limited xp...

and if that's just not enough hedgehog,
<shortened url>
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Postby jimmylegs » Tue Apr 08, 2008 10:50 am

i went to pubmed for the latest published research on ms and b12:

Fortschr Neurol Psychiatr. 2007 Sep;75(9):515-27. [Review of the role of hyperhomocysteinemia and B-vitamin deficiency in neurological and psychiatric disorders--current evidence and preliminary recommendations][Article in German]


Herrmann W, Lorenzl S, Obeid R.
Institut für Klinische Chemie und Laboratoriumsmedizin, Universitätsklinikum des Saarlandes, Kirrberger Strasse, Gebaude 57, 66421 Homburg. prof.wolfgang.herrmann@uni-klinikum-saarland.de

Elevated concentration of total homocysteine (Hcy) in plasma (> 12 micromol/l) is a risk factor for several diseases of the central nervous system. Epidemiological studies have shown a dose-dependent relationship between concentrations of Hcy and the risk for neurodegenerative diseases. Hcy is a marker for B-vitamin deficiency (folate, B12, B6). Hyperhomocysteinemia (HHcy) causes hypomethylation which is an important mechanism that links Hcy to dementia. Supplementation with vitamins B aims at reducing the risk of neurodegenerative diseases. Current evidence suggests that Hcy-lowering treatment has a positive effect for the secondary and primary prevention of stroke. HHcy is very common in patients with Parkinson disease particularly those who receive L-dopa treatment. Furthermore, a positive association has been reported between HHcy and multiple sclerosis. Moreover, HHcy and vitamin B deficiency are reported to have a causal role in depression, and epilepsy. In addition several anti-epileptic drugs cause secondary HHcy. Therefore, sufficient intakes of the vitamins are recommended for patients who have already developed neuropsychiatric diseases. Vitamin B deficiency should be suspected in children with development disorders, failure to thrive and unexplained neurological manifestations. Elderly people are also an important at-risk group where vitamin B deficiency and HHcy have been linked to neurodegenerative diseases. Treatment with folate, B12, and B6 can improve cerebral function. Preventive vitamin B supplementation and sufficient intake seem very important for secondary and primary prevention of neuropsychiatric disorders, especially in subjects with a low intake or status of the vitamins.


murine blah

Mult Scler. 2007 Jun;13(5):596-609. Epub 2007 Feb 9.
Synergy between paclitaxel plus an exogenous methyl donor in the suppression of murine demyelinating diseases.Mastronardi FG, Tsui H, Winer S, Wood DD, Selvanantham T, Galligan C, Fish EN, Dosch HM, Moscarello MA.
Department of Structural Biology and Biochemistry, The Hospital for Sick Children, University Health Network, Toronto, Ontario, Canada. fabrizio@sickkids.ca

Progressive demyelination in multiple sclerosis (MS) reflects the negative balance between myelin damage and repair due to physical and molecular barriers, such as astrocytic glial scars, between oligodendrocytes and target neurons. In this paper, we show that combination therapy with paclitaxel (Taxol) plus the universal methyl-donor, vitamin B12CN (B12CN), dramatically limits progressive demyelination, and enhances remyelination in several independent, immune and nonimmune, in vivo and in vitro model systems. Combination therapy significantly reduced clinical signs of EAE in SJL mice, as well as the spontaneously demyelinating ND4 transgenic mouse. Astrocytosis was normalised in parallel to ultrastructural and biochemical evidence of remyelination. The combination therapy suppressed T cell expansion, reduced IFN-gamma, while enhancing IFN-beta and STAT-1 expression, STAT-1 phosphorylation and methylation of STAT-1 and MBP in the brain. Paclitaxel/B12CN has nearly identical effects to the previously described combination of IFN-beta/ B12CN, whose clinical usefulness is transient because of IFN-neutralising antibodies, not observed (or expected) with the present drug combination. This report provides a mechanistic foundation for the development of a new therapeutic strategy in humans with MS.


Lancet Neurol. 2006 Nov;5(11):949-60.
Vitamin B12, folic acid, and the nervous system.Reynolds E.
Institute of Epileptology, King's College, Denmark Hill Campus, Cutcombe Road, London, SE5 6PJ, UK. reynolds@buckles.u-net.com

There are many reasons for reviewing the neurology of vitamin-B12 and folic-acid deficiencies together, including the intimate relation between the metabolism of the two vitamins, their morphologically indistinguishable megaloblastic anaemias, and their overlapping neuropsychiatric syndromes and neuropathology, including their related inborn errors of metabolism. Folates and vitamin B12 have fundamental roles in CNS function at all ages, especially the methionine-synthase mediated conversion of homocysteine to methionine, which is essential for nucleotide synthesis and genomic and non-genomic methylation. Folic acid and vitamin B12 may have roles in the prevention of disorders of CNS development, mood disorders, and dementias, including Alzheimer's disease and vascular dementia in elderly people.


Metab Brain Dis. 2006 Sep;21(2-3):121-37. Epub 2006 May 26.
Iron and the folate-vitamin B12-methylation pathway in multiple sclerosis.van Rensburg SJ, Kotze MJ, Hon D, Haug P, Kuyler J, Hendricks M, Botha J, Potocnik FC, Matsha T, Erasmus RT.
Chemical Pathology, National Health Laboratory Service and the University of Stellenbosch, Tygerberg Hospital, PO Box 19113, 7505 Tygerberg, South Africa. sjvr@sun.ac.za

Some subjects with multiple sclerosis (MS) present with low blood iron parameters. Anecdotal reports and a single patient study suggest that iron supplementation may be beneficial in these subjects. Myelin is regenerated continually, but prerequisites for this process are iron and a functional folate-vitamin B12-methylation pathway. The aim of this study was to determine iron status, folate and homocysteine in MS subjects, and to evaluate the effect on MS symptoms if deficiencies were addressed. Results: In relapsing-remitting MS subjects, serum iron concentration correlated significantly with age at diagnosis (r=0.49; p=0.008). In Caucasian female MS subjects, serum iron and ferritin concentrations were significantly lower than in matched controls. In a 6-month pilot study, 12 subjects taking a regimen of nutritional supplements designed to promote myelin regeneration, improved significantly neurologically as measured by the Kurzke EDSS (Total Score means 3.50 to 2.45, 29.9%; p=0.021). These were significantly improved (p=0.002) compared to 6 control group patients taking multivitamins (Kurzke Score increased by 13.9% from 4.83 to 5.50). Both groups had significantly reduced homocysteine concentrations at 6 months, suggesting that methylation is necessary but not sufficient for myelin regeneration.


J Neurol Sci. 2005 Jun 15;233(1-2):93-7. Links
Vitamin B12, demyelination, remyelination and repair in multiple sclerosis.Miller A, Korem M, Almog R, Galboiz Y.
Division of Neuroimmunology and Multiple Sclerosis Center, Carmel Medical Center, Haifa 34362, Israel. millera@tx.technion.ac.il

Multiple Sclerosis (MS) and vitamin B12 deficiency share common inflammatory and neurodegenerative pathophysiological characteristics. Due to similarities in the clinical presentations and MRI findings, the differential diagnosis between vitamin B12 deficiency and MS may be difficult. Additionally, low or decreased levels of vitamin B12 have been demonstrated in MS patients. Moreover, recent studies suggest that vitamin B12, in addition to its known role as a co-factor in myelin formation, has important immunomodulatory and neurotrophic effects. These observations raise the questions of possible causal relationship between the two disorders, and suggest further studies of the need to close monitoring of vitamin B12 levels as well as the potential requirement for supplementation of vitamin B12 alone or in combination with the immunotherapies for MS patients.


there that list goes back one further than my dx date so should have us caught up :)
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