B12 - CCSVI Connection

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: B12 - CCSVI Connection

Postby Anonymoose » Tue Jan 29, 2013 3:15 pm

PN,

Check out Laurie's reply on this page. Do you supplement potassium?
http://forums.phoenixrising.me/index.ph ... ion.11180/
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Re: B12 - CCSVI Connection

Postby PointsNorth » Tue Jan 29, 2013 4:02 pm

moose - I tried potassium as a replacement for magnesium in recent times - don't think it had any affect on B12. I do take bananas in my smoothies, though.
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Re: B12 - CCSVI Connection

Postby Anonymoose » Tue Jan 29, 2013 4:31 pm

Hm. I've read that potassium can cause aldo to increase (stopped eating bananas that day lol) so maybe supplementing with potassium is counterproductive and the increased aldo just makes you wee out the supplement.

I might just go bonkers if you don't try clonidine to see what it does for your levels. 8O No pressure though. It's okay if my son has a raving lunatic for a mother. :lol: (he already does so don't worry about it)
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Re: B12 - CCSVI Connection

Postby PointsNorth » Wed Jan 30, 2013 3:57 pm

Will I need a script for clonidine?

Also, I found in a 2010 post about restenosis - that B12+folate taken before angio reduces chance of restenosis. Perhaps this could become part of pre-venoplasty regimen?? I restenosed exactly 1-week post venoplasty after each try. Maybe B12 before venoplasty?

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic12221.html
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Re: B12 - CCSVI Connection

Postby Anonymoose » Wed Jan 30, 2013 4:56 pm

Yes, you would need a prescription...at least my clonidine is by prescription. My neurologist is pretty "whatever you want" with me so I don't know how another doctor would react to the request. I think it's a legit request to ask that they help you manage your hpa-axis dysregulation given the known harmful effects of excess cortisol and aldosterone. I started on a .1 mg patch which knocked out all muscle tension and buzzing until I cold turkey kicked my atrocious caffeine addiction a couple of days ago. Now a few buzzes are popping up. I think the caffeine was magnifying the effect of the clonidine. So, Friday I'm upping my dose to a .2mg patch with my neurologists approval (and new prescription!). Just mentioning that in case your first dosage doesn't impress you...if you decide to try it.

B12 would work IF your body could use it (adequate potassium levels). Somewhere in the CCSVI forum there is a thread about ACE DD genotype and restenosis. That genotype is associated with an exaggerated aldosterone response and increased risk of restenosis. Clonidine should cut back on your risk of restenosis for multiple reasons.
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Re: B12 - CCSVI Connection

Postby MarkW » Sun Feb 03, 2013 2:45 am

PointsNorth wrote:Howdie Mark,
I've tried/trying loads of methyl/dibencozide supps including a 15g methylcob sublingual. I find that the injectable is far better than the sublingual. I will post my test results re: B12 deficiency (methylmalonic acid/homocysteine) when I get them next week..................My Gastro thinks that just because my serum level is high that there can't be a problem. I try to explain 'functional deficiency' and 'malabsorption' but no one is home. PN

My thought was to try injections and S/L tabs in combination to try to actually get some B12 adsorped. Maybe dig into the co-factors in B12 adsorption.
Best wishes in trying to sort out your B12 problem.
MarkW
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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: B12 - CCSVI Connection

Postby PointsNorth » Sun Feb 03, 2013 2:01 pm

Thanks Mark, can I ask what co-factors you refer to? I just got a test completed that shows mehylmalonic acid being low and I'm curious what my homocysteine level is. Vitamin D and CoQ is very low and I supplement daily??? 6000iu of Vitamin D! Some sort of genetic mutation maybe?

I will post as soon as I can redact.

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Re: B12 - CCSVI Connection

Postby Anonymoose » Sun Feb 03, 2013 2:22 pm

PN,

I don't know if you venture out of CCSVI land so I thought I'd just hand you this link in case you missed it. general-discussion-f1/topic21580.html. Our vitamin d levels are regulated by fbg-23 (and vice versa) which is influenced by aldosterone (surprise! I should change my name to Aldomoose). So, I think you are right. Our cyp450 gene oddities are likely causing our low levels. I can't wait to get my new levels to see what reducing Aldo is doing to them.
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Re: B12 - CCSVI Connection

Postby Cece » Mon Feb 04, 2013 9:05 am

Anonymoose wrote:PN,

I don't know if you venture out of CCSVI land so I thought I'd just hand you this link in case you missed it. general-discussion-f1/topic21580.html. Our vitamin d levels are regulated by fbg-23 (and vice versa) which is influenced by aldosterone (surprise! I should change my name to Aldomoose). So, I think you are right. Our cyp450 gene oddities are likely causing our low levels. I can't wait to get my new levels to see what reducing Aldo is doing to them.

Ok, that's interesting.
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Re: B12 - CCSVI Connection

Postby MarkW » Mon Feb 04, 2013 1:41 pm

PointsNorth wrote:Thanks Mark, can I ask what co-factors you refer to? I just got a test completed that shows mehylmalonic acid being low and I'm curious what my homocysteine level is. Vitamin D and CoQ is very low and I supplement daily??? 6000iu of Vitamin D! Some sort of genetic mutation maybe?
PN

Hello PN,
I know little about B12 so am guessing that co-factors are crucial and worth digging into. I like to think I know a bit about Vit D3 and MS but beyond the fact that high D3 (above 125mmol/L) in blood is good I am not sure. OK we know Zn, Ca, Mg and Se are relevant but the detail is unknown.
Best wishes for your digging into B12 and your tests.
MarkW
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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: B12 - CCSVI Connection

Postby PointsNorth » Thu Feb 07, 2013 10:49 am

Cece wrote:
Anonymoose wrote:PN,

I don't know if you venture out of CCSVI land so I thought I'd just hand you this link in case you missed it. general-discussion-f1/topic21580.html. Our vitamin d levels are regulated by fbg-23 (and vice versa) which is influenced by aldosterone (surprise! I should change my name to Aldomoose). So, I think you are right. Our cyp450 gene oddities are likely causing our low levels. I can't wait to get my new levels to see what reducing Aldo is doing to them.

Ok, that's interesting.


I think I shall be tested for the MTHFR gene mutation.

http://mthfrmd.com/?p=31

http://www.ncbi.nlm.nih.gov/pubmed/21190091
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Re: B12 - CCSVI Connection

Postby PointsNorth » Tue Feb 12, 2013 12:42 pm

I wonder if supplementing (high dose) with active B6/9/12 + metafolin pre/post venoplasty could help prevent re-stenosis? I would think that doses much higher than those listed below could be used. Metanx has been mentioned here 6+ years ago.


Metanx® tablets are indicated for the distinct nutritional requirements of patients with endothelial dysfunction21-23 who present with loss of protective sensation13 and neuropathic pain24-26associated with diabetic neuropathy.

The usual adult dosage of Metanx® is one tablet twice daily and it is OK to take both tablets at the same time.
L-methylfolate Calcium (as Metafolin®)3mg
Pyridoxal 5′-phosphate35mg
Methylcobalamin2mg
http://www.metanx.com/helpful-resources ... ick-facts/

Study indicates Metanx increases intraepidermal nerve fiber density.
http://diabetes.diabetesjournals.org/co ... 1524.short

Another Study shows 73% of patients show increased ENFD, 82% of patients - reduced pareesthsia
http://www.ncbi.nlm.nih.gov/pubmed/21769070
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Re: B12 - CCSVI Connection

Postby Anonymoose » Sun Feb 17, 2013 8:14 am

Anonymoose wrote:Hm. I've read that potassium can cause aldo to increase (stopped eating bananas that day lol) so maybe supplementing with potassium is counterproductive and the increased aldo just makes you wee out the supplement.

For us, this makes no sense in theory or in practice. I've been consuming far more potassium than usual the past few days and I've not noticed any of the symptoms I associate with aldosterone returning (the minor neck tweak was a fluke). I guess potassium would only trigger aldosterone release if it were enough to upset the na/k balance...that homeostasis thing.

We're supposed to consume 4700mg of potassium a day. Wow. It's really hard to do. I've not managed to pull it off yet. Too much food to eat! I have noticed a radical increaase in energy and some sensory issues have completely abated at times but they come and go at a much reduced level of intensity.

So, keep eating those bananas...maybe eat even more. :)

I know this didn't seem to help with your b12 issues but couldn't leave that erroneous thought uncorrected.

Did you get your MTHFR tested? (Am I the only one who sees MTHFR as shorthand for something else...kind of rude...something your (that's a general "your") dad might be called??)
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Re: B12 - CCSVI Connection

Postby PointsNorth » Wed Mar 06, 2013 6:15 pm

I just ordered my "MTHFR" test and I see that it has shipped.

I've recently read that 30% of PwMS are B12 deficient. I'm also seeing articles about lower rates of re-stenosis associated with B12 supplementation. A cheap/easy measure. I wonder what Dr. S thinks?

Decreased Rate of Coronary Restenosis after Lowering of Plasma Homocysteine Levels — NEJM
http://www.nejm.org/doi/full/10.1056/NEJMoa011364

Vitamin B12: Evidence - MayoClinic.com (mixed results)
http://www.mayoclinic.com/health/vitami ... N=evidence

Homocysteine Lowering and Restenosis After Coronary Angioplasty - General Medicine
http://general-medicine.jwatch.org/cgi/ ... 001/1204/1
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Re: B12 - CCSVI Connection

Postby jimmylegs » Thu Mar 07, 2013 4:49 am

hi pn, only if you don't mind.. could you post (or pm) your daily regimen, plus any levels/dates from testing over the past while, that you might have handy?
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