Go Back   NeuroTalk Support Groups > Health Conditions M - Z > Parkinson's Disease

Parkinson's Disease Tulip

B-12 deficiency in PD

Reply
Thread Tools Display Modes
Unread 02-21-2013, 05:09 AM   #21
janetah
Junior Member
 
Join Date: Jul 2008
Location: Sawley, Notts UK
Posts: 27
Default

Muireann,

Yes, gait and balance are pretty much normal now I'd say - for a woman of 58 who doesn't do much physical exercise except for walking. I live on a boat, which I certainly couldn't have contemplated before a couple of years ago.

Soccertese, no I don't have PD as far as I'm aware it's very interesting you ask. Could it be that some symptoms of PD are, rather, related to B12 deficiency? In Japan people are considered deficient with serum B12 levels < 500 pg/ml whereas in the US and UK the lower normal limit is much lower. That leaves an awfully high number of people at risk it seems
http://www.medicalcompassmd.com/b12-...ndards-may-be/
There are papers which show neurological problems in older people may be B12 related
http://www.ncbi.nlm.nih.gov/pubmed/10448529
but I assume that in this research the definition of 'B12 deficient' is based on the US/UK lower limit.

Jan
janetah is offline   Reply With Quote
Unread 02-21-2013, 06:04 AM   #22
janetah
Junior Member
 
Join Date: Jul 2008
Location: Sawley, Notts UK
Posts: 27
Default Rich van K protocol

I thought I'd post this additional info in case it's useful to anyone.

Here is Rich van Konynenburg's protocol - *edit*
I didn't see this protocol until I'd more or less recovered at which point as I mentioned, I also added in T3 because of the hypothyroidism. I was much more bull-at-a-gate and used 5 or 6 x 5000mcg sublingual Jarrow M-B12 lozenges a day (first thing, on an empty stomach) for about a year + 1 Adenosylcobalamin + 1 cod liver oil + 1/4 Metafolin + 1 multivitamin. Rich is cautious about overdriving the methylation cycle - I didn't know about this at the time. I seem to have survived without ill effects - but I don't know this for sure, there may be consequences which will show up later in life. The folks on the WrongDiagnosis thread, Freddd and Kevinmillhill both of whom have recovered from more severe symptoms than I had, advised high doses were necessary to effect healing of neurological (demyelinating) effects of B12 deficiency.

As I started to feel better I gradually scaled back the B12 and now take 1/2 a 5000mcg lozenge a day + 1 Adenosylcobalamin every few days + 1/4 Metafolin per day + 1 cod liver oil per day. I get T3 from a Mexican online store and take 3/4 of 25mg once a day.

Btw my serum B12 level was 330 pg/ml in 1998 - I got the hospital to look back in my records for it. I can't be sure I hadn't taken some kind of B12 supplement before this. My symptoms started in 1984.

*edit*

Last edited by Chemar; 02-21-2013 at 07:09 AM. Reason: sorry but the place you copied from has copyright so no copy/pasting allowed
janetah is offline   Reply With Quote
"Thanks for this!" says:
Muireann (02-21-2013)
Unread 02-21-2013, 07:18 AM   #23
janetah
Junior Member
 
Join Date: Jul 2008
Location: Sawley, Notts UK
Posts: 27
Default oops, here's the link to Rich's protocol

http://forums.phoenixrising.me/index...evision.19050/
janetah is offline   Reply With Quote
Unread 02-21-2013, 08:56 AM   #24
lurkingforacure
Senior Member
 
Join Date: Feb 2008
Posts: 1,312
Default baseline tests

It sure would be interesting to have a newbie have their B12 tested before beginning on sinemet, as I understand those taking levodopa usually have lower/deficient B12...if you are already low in B12 upon dx, and sinemet makes things worse, perhaps that is why we progress? This would have to be done by the correct test, not the test most docs order, as discussed in the "Could it be B12?" book mentioned in another post.

Stress depletes the B vitamins and perhaps it is that chronic assult of cortisol that stress produces, compounded by insufficient B vitamins, that cascade into the demon we know as PD. Not saying it's as simple as that, (or is it? as time goes on, more things happen, but in the beginning, maybe it is as simple as this...), but a few, accurate baselines of B12would be very nice to have in assessing this theory.

Any newbies here want to get tested for B12 and share the results?
lurkingforacure is offline   Reply With Quote
Unread 02-21-2013, 09:25 AM   #25
mrsD
Super Moderator
 
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 28,617
Lightbulb

Most of us at PN here get tested. I, also, believe it is really important given how common low B12 is becoming. In fact now we have NIH recommendations for all persons over 50 to be taking a B12 supplement.

We have been posting, first rose, and now I have taken up the subject since 2009 when rose decided to take a break from the internet. The use of acid blocking drugs daily for long periods, is a main factor today, compared to a decade ago when we first brought this subject to BT, and now at NT here.

Other drugs will deplete B12 too. But they are not as common as the acid blocking ones which are now OTC in US.

About 30% of people as they age lose acid in the stomach and that is a factor as well. Vegans are at risk.

Those of us taking B12 at PN forum here try to keep our test results at 1000 or more. The US labs commonly only go up to 2000, as that is the ceiling for their calibration for the machines.

Low B12 levels are so common. It is in most peoples' best interests PD or not, who have neurological symptoms to get this evaluated and fixed. It is pennies a day for methylcobalamin oral. Our MG forum members use methylB12, TBI forum, PN, and MS, here.

It is critically important to take oral B12 on an empty stomach, as only a small amount of each dose is absorbed passively in the intestine. This can be ruined by the presence of fiber and food which will act like a sponge and remove the likelihood of absorption. I've been pushing this for many years, because of studies showing other microgram drugs are impaired by food as well. (levothyroxine and digoxin for example). But you will still find supplement makers printing "take with food or a meal" on B12 supplements. Disregard that, as it is basically in error.

This is my B12 informational thread which I started in 2009.
http://neurotalk.psychcentral.com/thread85103.html
It has had over 90,000+ views since then.

There are many new voices appearing on the net about this subject. This is very good, because that means more people may find help for discouraging chronic medical symptoms.

My first B12 test was 849. After testing out Puritan's new methylB12 it was 1999 after 3 months.

Keep in mind that many other countries report the results of B12 testing in different units. In US it is pg/ml, others are pmol/L. There is a conversion factor for this:
http://www.unc.edu/~rowlett/units/sc...ical_data.html

400pg/ml and below are now considered "low" in US. This link explains it for doctors, but it is understandable for all of us:
http://www.aafp.org/afp/2003/0301/p979.html
As you can see this link is from 3-2003... and yet today doctors are ignoring levels of 200 and calling them "normal". So it is really up to YOU to get your test results to see where you are.
Discontinue any vitamins for 7 days before having the tests run.
This will give a more accurate picture of where your level is.


Quote:
Originally Posted by lurkingforacure View Post
It sure would be interesting to have a newbie have their B12 tested before beginning on sinemet, as I understand those taking levodopa usually have lower/deficient B12...if you are already low in B12 upon dx, and sinemet makes things worse, perhaps that is why we progress? This would have to be done by the correct test, not the test most docs order, as discussed in the "Could it be B12?" book mentioned in another post.

Stress depletes the B vitamins and perhaps it is that chronic assult of cortisol that stress produces, compounded by insufficient B vitamins, that cascade into the demon we know as PD. Not saying it's as simple as that, (or is it? as time goes on, more things happen, but in the beginning, maybe it is as simple as this...), but a few, accurate baselines of B12would be very nice to have in assessing this theory.

Any newbies here want to get tested for B12 and share the results?
__________________
aka mrsdoubtfyre
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

.
MEOW...you're not the real Santa!
************************************
Please use the search function to find more information here in our forums. Your keyword must be at least 4 letters long. This is the handy link:


.


************************************
Here is a link to our guidelines that explains how to post links and information properly here due to copyright laws:


.
mrsD is offline   Reply With Quote
Unread 02-21-2013, 09:31 AM   #26
soccertese
Magnate
 
Join Date: Nov 2007
Posts: 2,078
Default

Quote:
Originally Posted by lurkingforacure View Post
It sure would be interesting to have a newbie have their B12 tested before beginning on sinemet, as I understand those taking levodopa usually have lower/deficient B12...if you are already low in B12 upon dx, and sinemet makes things worse, perhaps that is why we progress? This would have to be done by the correct test, not the test most docs order, as discussed in the "Could it be B12?" book mentioned in another post.

Stress depletes the B vitamins and perhaps it is that chronic assult of cortisol that stress produces, compounded by insufficient B vitamins, that cascade into the demon we know as PD. Not saying it's as simple as that, (or is it? as time goes on, more things happen, but in the beginning, maybe it is as simple as this...), but a few, accurate baselines of B12would be very nice to have in assessing this theory.

Any newbies here want to get tested for B12 and share the results?
don't you think there would be an epidemic of pd if B-12 absorption problems were a cause and especially in poorer countries and/or even where there are a lot of vegetarians?
soccertese is offline   Reply With Quote
Unread 02-21-2013, 09:43 AM   #27
janetah
Junior Member
 
Join Date: Jul 2008
Location: Sawley, Notts UK
Posts: 27
Default tests for B12

One test mentioned in 'Could it be B12?' is the uMMA (urinary methylmalonic acid) test
http://www.b12.com/history.htm
the other is homocysteine.

A 2012 interview with Sally Pacholok suggests serum B12 may still be important to have tested since it's the range at issue, not the test itself:
"Serum homocsyteine and urine methymalonic acid are a little more specific these last two tests will be positive in people who have serum B12 under 450, but are still not 100% accurate. Sometimes a test is not 100%. We need to raise the range of serum B12."
http://realfoodforager.com/the-meat-...lok-r-n-b-s-n/

and all before starting any B12 supplementation.
janetah is offline   Reply With Quote
"Thanks for this!" says:
Muireann (02-21-2013)
Unread 02-21-2013, 09:48 AM   #28
Bob Dawson
Senior Member
 
Join Date: Dec 2008
Posts: 1,132
Default

Quote:
Originally Posted by soccertese View Post
don't you think there would be an epidemic of pd if B-12 absorption problems were a cause and especially in poorer countries and/or even where there are a lot of vegetarians?
There is an epidemic of PD.
But in poorer countries, where life expectancy is 10 or 15 years shorter, fewer people develop "old age" diseases.
Bob Dawson is offline   Reply With Quote
"Thanks for this!" says:
lindylanka (02-21-2013), Muireann (02-21-2013)
Unread 02-21-2013, 10:04 AM   #29
soccertese
Magnate
 
Join Date: Nov 2007
Posts: 2,078
Default

Quote:
Originally Posted by Bob Dawson View Post
There is an epidemic of PD.
But in poorer countries, where life expectancy is 10 or 15 years shorter, fewer people develop "old age" diseases.
bob,
but if B-12 was a factor, don't you think you would see a significantly higher incidence in poorer countries and among vegetarians? there are still a lot of old HINDUS in india and a lot of elderly vegetarians around the world, heck, vegetarians live longer don't they on average and are healthier? there are small religious groups around the world that are vegetarian by choice.

i'm in the minority here but i sincerely doubt poor b-12 absorption/insufficient b-12 is a contributive factor in pd. wouldn't you see clusters in families, they all eat the same usually and have 50% of the same genes?
soccertese is offline   Reply With Quote
Unread 02-21-2013, 10:04 AM   #30
mrsD
Super Moderator
 
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 28,617
Lightbulb

Keep in mind that you can be low in B12 totally independently of
your PD. Right now about 40% of people in US are low. (this was reported on Dr. Oz's show). And that figure is well above PD statistics. In fact there are more people with PN (peripheral neuropathy) than PD and MS combined.

The actions of B12 in the brain are just being discovered. One very important one, is the synthesis of melatonin from serotonin, which requires methylcobalamin as a cofactor. So if you are low in B12 you may not sleep well at all. That is only one factor however.

In the US thinking and understanding low B12 really started in earnest in 1999, with Dr. Christopher Snow's article:
http://archinte.jamanetwork.com/arti...ticleid=485067
This is the medical article that brought rose to BT (and NT) over a decade ago.

And yes, India now is a leading location for B12 papers. You can see that easily by searching the net and PubMed. Low B12 is very common there. People can die early when low.

In Japan in the 70's, an epidemic of low B12 happened due to a drug called Vioform. Because of the thousands and thousands of people who died, were blinded, and/or ended up in wheelchairs because of using Vioform for diarrhea. This drug is now called clioquinol, and was taken of the oral market in US before doing so much damage. You can see a list of NeuroTalk posts I've made about this here: http://treato.com/Vitamin+B-12,Clioquinol/?a=s
Hence Japan has since then used very high cut off's for B12 testing normals, higher than US.
__________________
aka mrsdoubtfyre
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

.
MEOW...you're not the real Santa!
************************************
Please use the search function to find more information here in our forums. Your keyword must be at least 4 letters long. This is the handy link:


.


************************************
Here is a link to our guidelines that explains how to post links and information properly here due to copyright laws:


.
mrsD is offline   Reply With Quote
"Thanks for this!" says:
Muireann (02-21-2013), Onward (02-22-2013)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
B12 Deficiency KittyKatty Vitamins, Nutrients, Herbs and Supplements 8 08-28-2011 05:33 PM
B12 deficiency and MS related? californiafriend Vitamins, Nutrients, Herbs and Supplements 4 05-06-2011 02:56 PM
Vitamin D Deficiency AnnieB3 Myasthenia Gravis 13 10-30-2010 10:25 AM
Vit D deficiency NaeNae Vitamins, Nutrients, Herbs and Supplements 6 04-22-2008 07:05 PM
Vit B12 deficiency. Megan Peripheral Neuropathy 9 11-17-2007 05:11 PM


All times are GMT -5. The time now is 11:03 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.


All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy
NeuroTalk Archives