Muireann provided this must see video link in another thread, but there is some interesting research emerging on B-12 and PD...

http://www.youtube.com/watch?v=BvEizypoyO0


Vitamin B12-impaired metabolism produces apoptosis and Parkinson phenotype in rats expressing the transcobalamin-oleosin chimera in substantia nigra.

Just had my levels checked last week, so now I really anticipate results. I almost feel like it is worth it to start a list of all things causing Parkinsonism and testing when applicable. Wonder how many of us would still be in the Idiopathic PD group?

Laura

Conductor71 writes:
Great idea!

In my opinion, too little effort is put into what caused our PD, what is causing our PD to progress, and what we (indidually) respond to.

As we've discussed before, we need individual clinical trials.

John

who created that video? almost nobody is identified who is speaking. do they do it at the end?
i watched a little of that video, a string of anecdotes interspersed with quotes from experts that don't actually say there is a major problem but because it is interspersed with all these first person accounts you think they are in agreement with the video imho is not very convincing evidence. seems like they are talking about B-12 deficiency when maybe they should be talking about not being able to absorb B-12??

are you saying everyone should go out and get b-12 tests?

i can't understand how anyone can have a b-12 deficiency if they eat meat or take a multi-vitamin.

according to this article, the body stores a lot of b-12
"The Need for Supplementation

Deficiency is never the result of any short-term issue. The usual (non-vegetarian) “Western” diet provides 5-7 mcg of B12 per day, which is more than adequate to maintain appropriate levels: the RDA is 2mcg/day (2.6mcg/day in pregnancy). The total body stores are 2-5 milligrams, meaning that deficiency is the result of years of reduced intake – missing a day, a week or a month or more of any B12 consumption would not be expected to result in any clinically meaningful effects in someone with previously normal body stores."

http://www.sciencebasedmedicine.org/...nergy-panacea/

Soccertease,

Your opinion, as expressed here, is anything but humble. If you had watched more than a little of the video, your questions are actually more than adequately addressed.

Muireann

http://b12awareness.org/
this group sponsered that "documentary".
the two principals seem to make a living writing about b-12 deficiency.
http://b12awareness.org/about-us-sal...12-deficiency/

the website is owned by Copyright © 2009 - Sally Pacholok, R.N. All Rights Reserved.
one of the principals, this doesn't appear to be a "grassroots" organization.

when you click on the CONTACT link, you get
Many people ask us to refer them to a “B-12 physician.” We do not have a list of health care providers or physicians regarding this. Bottom line, ALL physicians should know about and be able to test for and treat B-12 deficiency, which we know can be challenging.
- no phone #
http://b12awareness.org/contact/
and they can't recommend one doctor or nurse or healthcare organization for something that they say is so serious?

i have no agenda here, i just like to see both sides of every issue. it was a great "documentary" if you already believed there was a plethora of doctor incompetence. if you knew nothing about b-12 but wanted verifiable info seemed to me like an infomercial designed to tug on your heart strings.

There can be low B12 now commonly because of the overuse of acid blocking drugs which raise the pH of the stomach acid, and
prevent intrinsic factor from working. The B12 has to be broken out of protein sources by the action of acid and enzymes. Since only 2-4mcg a day are provided this way, it is critical for the B12 to not be interfered with.

Then there are the genetic failures to methylate cobalamin to methyl form. (along with folic acid to methylfolate) This is called MTHFR polymorphism, and it appears that the 10% initially thought occurance may be as high as 30% in some populations.
(a specialist physician came on NT a couple of years ago suggesting research pointing in the 30% direction.)

Another spot where failure can occur is at the CSF barrier. There is a gradient from serum to CSF which pumps the B12 into the CSF (cerebrospinal fluid). This may fail. Also if the serum is low, the gradient does not favor methylcobalamin's passage into the brain. Fibromyalgia and MS patients have been tested and found low in B12 in the CSF.

Other drugs will reduce B12 in the body. Metformin for type II diabetes is one, many antivirals, and long term antibiotic treatments like for Lyme, etc.

We have a B12 thread here that I've gathered much data on
supplementation and biochemistry:
http://neurotalk.psychcentral.com/thread85103.html

Here in the US labs still report lows, below 400pg/ml as "normal" and so many people continue to decline even after testing. It is the FIRST question I bring up to new posters here, because of how common this problem has become. 400 is the new cut off here in US, and in Japan it is even a higher number.
There was even an Mystery Diagnosis program on Discovery devoted to this problem. You could probably find it online now and watch.

Some of the more aggressive integrative doctors are now doing serum transcobalamin testing. But some labs don't offer this yet, and it is more expensive, etc. It is supposed to be more accurate. People in the gray area of possible trouble, can also have MMA and/or homocysteine measured and MMA will be high in low B12 states. MMA will reveal a problem when serum levels may be high (in those with the genetic
MTHFR errors), revealing methylation failures.

former posting concerning B12 and folic acid deficiencies in PD patients who take Levodopa
http://neurotalk.psychcentral.com/sh...mrs+folic+acid

Folic acid, B12 and Levodopa--MrsD is this well known?
(wanted to make this a separate topic. most of the articles have appeared in foreign journals. Our neurologist has never mentioned the need to supplement with B12 and folic acid. Has anyone on this forum been advised to use these with Sinemet? thanks, madelyn)

folic acid and B 12
there are a number of studies noting use of supplements Vitamin B 12 and folic acid in instances of B 12 deficiencies to decrease homocysteine levels that result from use of Levodopa. Levodopa reportedly interferes with folate metabolism and B 12 function.

Parkinsonism Relat Disord. 2008;14(4):321-5. Epub 2007 Dec 4.
Folate and vitamin B12 levels in levodopa-treated Parkinson's disease patients: their relationship to clinical manifestations, mood and cognition.

Abstract
We tested the hypothesis that mood, clinical manifestations and cognitive impairment of levodopa-treated Parkinson's disease (PD) patients are associated with vitamin B12 and folate deficiency...Levodopa-treated PD patients showed significantly lower serum levels of folate and vitamin B12 than neurological controls, while depressed patients had significantly lower serum folate levels as compared to non-depressed. Cognitively impaired PD patients exhibited significantly lower serum vitamin B12 levels as compared to cognitively non-impaired. In conclusion, lower folate levels were associated with depression, while lower vitamin B12 levels were associated with cognitive impairment. The effects of vitamin supplementation merit further attention and investigation.
PMID: 18055246 [PubMed - indexed for MEDLINE]


The influence of levodopa and the COMT inhibitor on serum vitamin B12 and folate levels in Parkinson's disease patients.
...Our findings show that levodopa-treated Parkinson's disease patients have low folate (p < 0.0007) and vitamin B12 levels (p < 0.0003). They also demonstrate that the addition of a COMT-i to levodopa + DDC-i treatment causes lower serum vitamin B12 (p < 0.03) and folate levels (p < 0.005) than levodopa + DDC-i treatment alone. We suggest supplementary treatment with vitamin B12 and folic acid in these situations.
http://www.ncbi.nlm.nih.gov/pubmed/17565222

Neurol Neurosurg Psychiatry 2003;74:549 doi:10.1136/jnnp.74.4.549
Correspondence
Benefit of folic acid supplementation in parkinsonian patients treated with levodopa
T Müller, D Woitalla, W Kuhn
+ Author Affiliations

Department of Neurology, St Josef Hospital, Ruhr University Bochum, Gudrunstrasse 56, 44791 Bochum, Germany
Correspondence to:
 Dr T Müller; 
 thomas.mueller@ruhr-uni-bochum.de
We read with interest the recent excellent review by Reynolds on the role of folic acid and the risks and benefits of its supplementation in the nervous system.1 It emphasises the beneficial importance of folate on the numerous methylation processes in combination with S-adenosylmethionine (SAM), which donates its methyl group to prevent hyperhomocysteinaemia.1 However SAM deficiency, which is associated with, for example, cognitive decline and/or mood disturbances, and increased total homocysteine levels, which support onset of vascular disease, may also caused by drugs, for example, levodopa.2,3 Levodopa is administered with dopa decarboxylase inhibitors (DDI) to prevent its peripheral degradation. This increases conversion of levodopa to 3-O-methyldopa (3-OMD) by the ubiquitious enzyme catechol-O-methyltransferase (COMT) in blood, peripheral tissues and in nigrostriatal neurons.2,3 COMT requires Mg2+ as cofactor and SAM as methyl donor. Thus O-methylation of levodopa to 3-OMD is associated with conversion of SAM to S-adenosylhomocysteine and subsequently homocysteine.

http://jnnp.bmj.com/content/74/4/549.1.full

I found out from a discussion thread on 23andme that my test data results indicated that I was "compound heterozygous" for the MTHFR mutation. I hoped this might explain some health issues & possibly treatment might help. But it quickly became obvious that the science is apparently not yet there to truly determine adequate levels of B12 or folate, nor how to treat if there actually is a deficiency. Just a lot of theories & opinions, some of dubious origin & validity. I got my B12, folate, & homocysteine levels tested & results showed more than adequate levels, but then the self-proclaimed experts claimed that didn't really mean anything. And it turns out that "treatment" with methylcobalamin & methyfolate can actually cause problems. Nearly impossible to find an MD who will recognize & treat. May be something to it, but scientific proof just not there yet, and it's not a condition supported by 23andMe research reports due to inadequate evidence. I gave up trying to figure out exactly what I should do, as nobody really seemed to know.

Do you know your blood level testing results?

People who do not methylate will have high MMA, and high homocysteine.

If you were in the outdated "normals" below 400 and above 180, you are actually LOW by the standards today.

Here is a medical site that is readable by laypersons:
http://www.aafp.org/afp/2003/0301/p979.html

The United States is behind many other countries in this regard. Many doctors have not updated their CME on this topic.

There is a concern now developing and that is in the literature about folate vs folic acid. Folic acid is inactive and is thought to compete at the BBB for the passage of natural methylated folate there for movement into the brain. In the US many foods are now fortified with folic acid...but for non methylators, this is useless.

I would like to ask you to expand on the statement:
Both methylfolate and methylcobalamin are available OTC in the US now. Many of us at the PN forum keep our B12 testing levels at or above 1000. There is no upper limit of safety set by the FDA or any other agency on B12. But it is important that folic acid not be taken without first fixing B12 if low. That is the only warning I am aware of at this time.

And @ olsen: The reference I use for drug induced nutrient depletions, by Pellon and LaValle, 2001 2nd ed. does not list
B12 or folate for levodopa. Only SAMe and potassium are mentioned. So if you are finding information on this process, it must be "newer" than 2001. The whole subject is quite complex, and one would expect new information to supercede the previously published data.

Hi, I am one of those with PD and Pernicious Anaemia. Both emerged after I started to feel unwell, but the PA came quite recently. It is B12 deficiency caused by lack of cells that produce intrinsic factor. At this point in time I do not know what is worse PD or PA. The latter certainly makes me incredibly tired, and the injections I get are not frequent enough. For those in the UK the PErnicious Anaemia Society has plenty of good information, as does B12.org. There is currently a petition going through the Scottish parliament to improve things for people with PA, but there is nothing like it south of the border.

I saw my neurologist a couple of weeks ago and he seemed completely ignorant about B12 issues, even though the damage it can do in the long term is neurological.

I have lots of issues relating to PA, and know that I am not getting the treatment that could improve things. When the injections do work not only do I feel a lot better, but from the ongoing tiredness and other symptoms that do not fluctuate like PD I am able to see my Parkinson symptoms much more clearly and observe those fluctuations easily. From this I am able to tell what PA is actually doing - and I can unequivocally say under treatment of PA can cause a lot of problems. It is yet another condition that health care workers seem to have little awareness of, in fact it is treated as though it is the equivalent of needing more vitamin C. It is not like that at all........

I'm going to watch the video and read over this stuff again and visit the link that MrsD posted, and maybe I will come back and respond again.

In the meantime if you do try and get tested for B12 make sure you are off any iron and folate supplements as they can make your bloods look more normal and give an incorrect reading.

Thank you, all the people who have posted on this.

Lindy